By Max Merget

That one moment, that one event that will change who you are started when I was three but never came to mind until I was 17 years old. My name is Max and I have been a brain cancer patient since I was a toddler. People always ask, “How did you know you had a brain tumor and what was it like?” The answer is simple if you have seen it first-hand. 

My family and some friends were enjoying a weekend in Canada at our cottage. I was only a little boy when my right leg started to drag on the ground. My right arm and hand clenched up, making it look as if I was some dinosaur with a short and useless arm. My speech patterns started to get distorted, making it hard for my parents to understand me. That is when you know you are having brain issues. 

My Mom scheduled an appointment with our family doctor that Monday. My pediatrician knew something was wrong and recommended we get to the University of Michigan’s Mott Children’s Hospital for further testing. Doctors there ran tests and an MRI of my brain, which exposed a massive cancerous brain tumor. The doctors were shocked when they looked at my images. They were confused to see my minor imperfections considering that my cancer took up two thirds of my head. Surgery was performed the next day. All of this was just the beginning play in the cards that I was dealt. 

My cancer came back at age four and again at seven. Throughout my life, I’ve had brain surgery three times, radiation therapy twice, and chemotherapy once. I do not have much memory from the early years of my life. I’ve had so many horrific experiences in my first 10 years of life that my brain decided to block them out. My only memories of my childhood comes from pictures, home videos, and the stories my parents tell me every once and a while. The memories come across with two perspectives. I look to first understand what happened to me. I can’t help myself to then understand my parents’ decisions and sacrifices they had to make.

It was the beginning of my senior year of high school and life was treating me well. I was doing well in school and got accepted to Grand Valley State University. My 10-year mile marker for being cancer free was coming up that year. I was told after 10 years of being cancer free, the chances of the cancer returning were slim. Every year, I would go in for MRI brain scans and for checkups. I always felt that the MRIs were pointless as I was feeling great, ready to conquer the world. I had cancer when I was a child and now I am in remission, was my thought. But then I was called in for an off-schedule MRI. Apparently, there was some scar tissue that my neurosurgeon saw and just to make sure, they wanted another scan. You go in for the scan and then you come back the next day and meet with the doctors to review the scans. The day to review the scans was my 10-year mile marker anniversary.

I will never forget this day. My appointment was at 11 am. My parents and I knew something was up, but I was staying optimistic. The car ride to Mott Hospital was quiet with some unanswered questions that would be answered soon enough. It was if I was driving only to get bad news. If my cancer came back, would I have to have brain surgery for a fourth time? How far would my treatment set me back? Sitting in the waiting room was never so painful and I was very eager for the nurse to call my name. Finally, she did, and I hopped out of my seat. My neurosurgeon has spina bifida and uses a Segway. It is a little hard for her to get around and we are usually in the office before she arrives, except for this appointment. I was the first to walk in with my mom and dad following. The meeting room was small with a sanitary smell. I was being quiet while my parents made small talk with my neurosurgeon and my oncologist. I was standing in the back by an open chair waiting for the news. My neurosurgeon spun around in her own chair and looked right at me. With a very powerful and determined voice she said, “Max, It’s back. Your brain cancer is back.”

I dropped my jaw and fell into the chair as if my legs fell out from under me. Thoughts rushed through my mind quickly without any resolve. Having the idea that I’d never have to go through this again and all the time I had put into functioning normally had just been an illusion. I learned that my cancer is very rare and that it can come back whenever it wants to. When I was three, I was one out of thirteen people in the country to be diagnosed. Also, my cancer is normally found in the spine. For some reason, mine is located in the frontal lobe of my brain. This was the first time that I actually knew what I had to undertake. Throughout the years, my parents never brought up this topic. It was difficult to handle my emotions and to keep my composure. As I was sitting in the back thinking about my life and how it was going to change, my neurosurgeon was going through my different options of removing the cancer. I had three options to choose from: surgery, radiation, and chemotherapy. Ultimately I was going to side with whatever my neurosurgeon thought. She has been with me since I was three and I trust every decision she makes. 

For 10 years of my life, I had the privilege to walk out of that hospital with a smile on my face. Now I was leaving with more questions than I had coming in. Words cannot explain the feeling of having an alien-like substance just eating away at your brain. The car ride home was extremely silent. All of the memories and emotions of my childhood came rushing through my parents’ minds. I could see from the back seat a single tear run down my mom’s face. Seeing that one tear only emphasized the hardship that I was yet again going to live through. Once I got back home, I went upstairs to my room and slammed the door in anger that my cancer was out of my hands to control. I had to accept my situation and get back to living my life. I took a shower, then regrouped so I could continue my day. I even went to work washing dishes at a pizza place. Going back to your normal life is the best mental treatment.

After a long seven-hour shift, I walked out to my car to leave when I noticed a lot of notifications on my phone. The word got out through my parents telling their friends about my news. I was trending on Twitter and everyone in my world had contacted me via Facebook, email, text, and calls. Then it came to me, maxyourbrian.org. I stated my own foundation for cancer research. I would have fundraiser events to educate the public about what cancer patients have to go through and the importance of funding the research done at Michigan Medicine. The funds supported the research time in the labs and paid for equipment. I raised $43,000 to fund my neurosurgeon’s research. 

My cancer will never succeed in bringing me down, but it will always be a part of my life. Once someone asked me, “what would life be like without cancer?” I had to think about it for a minute and I simply replied, “I don’t know who I’d be without cancer, but I love who I am with it.”

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About the Author

We are not here to live, but to thrive. Max Merget finds himself to be very fortunate to have been able to bounce back and survive brain cancer for the fifth reoccurrence. The MYB team will help raise awareness and money so that brain cancer patients can have a healthier life

By Andrea Gilats

It was August, a month past my seventy-fifth birthday and time for my annual mammogram. Though I have had annual mammograms for twenty-five years, I always fear them because I feel intensely anxious while awaiting the results. During the day or two following the procedure, I keep an ear tuned to my phone in case the dreaded call comes, and after that, I continue to feel on edge until the all-clear email arrives. Twice in the past two decades I have been sent for ultrasound examinations of my right breast, but both were in response to something my doctors felt, rather than something seen on a mammogram. Neither exam showed an irregularity, but each helped me feel luckier than I felt before I was tested. I cannot help but compare the sensation to the high one feels when an excruciating toothache, perhaps caused by an infected wisdom tooth, is relieved by a good dentist.

 Seventy-five marks the age at which some health experts suggest that women who are at average risk of breast cancer may no longer benefit from mammograms. I turned to Google, that indiscriminate portal of sources, and learned that the American Cancer Society says that mammogram screenings “should continue as long as a woman is in good health and is expected to live at least ten more years.” On the other hand, the United States Preventative Services Task Force, which offers health care providers, governmental entities, and members of the public guidance on whether or not to undergo a variety of procedures and tests, says that because of insufficient evidence, it cannot determine the balance of benefits and harms associated with mammography in women seventy-five and older. In other words, they would have no ill effect on health no matter how much longer the affected women lived.

 I did not have a mammogram during the inaugural year of the coronavirus pandemic, but in 2021, after being vaccinated against covid 19, I decided, albeit halfheartedly, to have one. All might have been well except that my discomfort with mammograms was not the only diagnostic decision I faced as I aged. Several years ago, my primary care doctor asked me if I would like a free CT (computerized tomography) scan of my lungs because I am a former smoker. The idea was to “catch something” in its asymptomatic early stages. Rather than being strictly diagnostic, it was precautionary. Rather than being preventive, it was—how best to characterize this?— informational, like a baseline mammogram.

 It took me no time to answer in the negative. I did not want to know if I had a lung tumor then, and I do not want to know now unless absolutely necessary. What if I had had that scan and been diagnosed with an untreatable cancer? How would it have felt to live with that diagnosis knowing that I was helpless against it, as my late husband did? My remaining time on Earth would have been a death watch, whether for a few months or a few years. Living with such knowledge is also a death knell to optimism: it crushes well-being and kills the spirit even as the body continues to function. As it turns out, in old age, ignorance can sometimes be bliss.

 Before I quit smoking, I was so afraid of having a chest x-ray or CT scan of my lungs that when I did need to visit a doctor, I scrupulously hid the fact that I smoked, including lying on questionnaires. This meant that for the first sixty-one years of my life, I never underwent an x- ray or scan of my lungs. That run ended in 2006 when what turned out to be an emphysema exacerbation landed me in the emergency room of United Hospital, St. Paul, Minnesota’s largest. There I suffered through a botched CT scan, which was followed by a successful PET (positron emission tomography) scan that revealed emphysema, but no tumors. I have not had an x-ray or scan of my lungs since, and never will again unless I am convinced that there is a compelling reason why an image of my lungs would be of consequential benefit to me.

 Truth be told, I was so afraid of invasive examinations and uncomfortable tests that I did not have regular physical exams until I was almost fifty years old. My doctor-free life came to an end one morning in the spring of 1995, when I awakened feeling so dizzy that I could not sit up. Never before and never since has my head whirled so violently for so long without letting up. In an amazing coincidence of true love, my husband awoke the same morning with his left ankle so swollen that he could not step into his work boots. Though each step burned, he could still walk, so he took charge. After feeding me some Advil, he called my insurance provider’s clinic, told them my tale of dizzy woe, and made an appointment for me at two o’clock that afternoon. After that, he called his healthcare clinic, which was then known simply as the “industrial clinic.” Come right away, he was told, so he got dressed and off he went in his moccasins.

 When he returned an hour and a half later, I was still in bed, unable to move my head. Thankfully, he had received a steroid injection to calm the swelling caused by a “mild sprain,” and he was already feeling better. He gave me more Advil, took me to the bathroom, held my head as I emptied my bowels, steadied me as I brushed my teeth, and delivered me back into bed, where I rested for another hour or so. When it was time to leave for my doctor’s appointment, he dressed me, bundled me into my jacket, walked me to the car, and secured my seat belt around me.

 At the clinic, a female doctor with an eastern European accent listened to my heart and took my blood pressure: 210 over 110. Heaven help me! With a dangerous bang, I had arrived in middle age. Luckily, by the time I entered the doctor’s office, my headache was subsiding somewhat, which allowed me to open my awareness to the enormous fish I would now have to fry. There and then, I was given medication to reduce my blood pressure, along with two prescriptions for hypertension medications that I would take for the rest of my life. I had avoided the common symptoms of hypertension for months, even years, by attributing my frequent headaches, heart palpitations, and relentless anxiety to work-related stress. Now, all of a sudden, I knew that stress alone could not account for the turmoil inside my body.

 Within two weeks, I was free of all these discomforts, but out of that scare had come new obligations. Just in time for my fiftieth birthday, I now had a duty to see my female doctor every three months in order to monitor my blood pressure, thereby averting a stroke, and, at her insistent recommendation, to undergo the gynecological examinations that would help me avoid a cornucopia of women’s cancers as I aged. In one afternoon, I became educated. I am neither ashamed nor proud of my ignorance; I offer my lesson here because it is one of the most salient truths about my health journey into old age: that it is a voyage that begins sooner and lasts longer than I could have imagined.

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About the Author

Andrea Gilats, Ph.D., is a writer, educator, and former yoga teacher who is the author of two books published by the University of Minnesota Press, Radical Endurance: Growing Old in an Age of Longevity (2024), and After Effects: A Memoir of Complicated Grief (2022), which won an Honorable Mention from the Forward Indies 2023 Book Awards. She is also the author of Restoring Flexibility: A Yoga-Based Practice to Increase Mobility at Any Age, published by Ulysses Press. Learn more about her at andreagilats.com.

Starting in January 2024, Health Story Collaborative had the privilege of working with The Boston Home, a long-term care community for adults with advanced Multiple Sclerosis and other progressive neurological disorders, to facilitate multiple Healing Story Sessions for their community.  Several brave residents have taken on the challenge of narrating and sharing their stories with their fellow residents, caregivers and staff at The Boston Home.  We are honored that they have agreed to share their written stories here for others to engage with and find connection and compassion.

By Beth Fornier

In 2015, when I was 26 years old, I moved out of my childhood home in Somerset, Massachusetts with my then boyfriend, Rob, and took a job as a guidance counselor. My mom encouraged me to live at home a little longer, but, at the time, I really wanted to have an apartment. Rob and I had looked at places together, and found one that we agreed was great. I felt excited.  

Looking back, it wasn’t a good idea. I still called my mom every day. I had followed in my mom’s footsteps by becoming an educator. One day, I called my mom after an especially hard day at work. She said, “Hi, what’s up?” And, I said, “thank you.” She said, “For what?” I thanked her for giving me a good childhood, an education, and making sure that I had everything that I needed. I had the kind of childhood where we stay outside playing with friends in the neighborhood until the streetlights came on. I always had plenty of food and clothes, and even a $5 weekly allowance. Just normal and happy. In my work, I realized that not everyone had the kind of childhood that I had. 

I loved my work and was proud of it. I had roughly 240 students and met with each of them two or three times a year, or more, depending on their needs. I was super organized, color coding all my files for my new students: freshmen, sophomores, juniors, and seniors. I made sure that they all had all of the credits they needed to graduate, and that they were doing well at home. If they were not, sometimes I needed to call the Department of Children and Families. I also taught guidance lessons for each grade, which I loved doing. I was a good orator and I did my best to make sure that the students understood the material. Many students came to see me, even if they were not my students.  

I had been warned about one student named Brenna, and was told that she would never talk to me, that she didn’t talk to any faculty or staff. In our first meeting, we were just sizing each other up. I remember her having a small smirk on her face and mischief in her eyes. I could practically hear the gears turning in her head: “How can I make this woman’s life miserable this year?” I just smiled back and introduced myself. And here the game started.  

I met with her regularly to establish a rapport.  She was always tardy and would come in late with a Dunkin Donuts cup. Before long, she started to call me Beth. I would roll my eyes and say, “Miss Fournier.” She would say, “Okay, Beth.” One day, her Mom said to me, I don’t know what you do when you talk to my daughter, but she wants to be a guidance counselor now because of you. I was so happy and surprised. I couldn’t believe it! I miss her a lot. I don’t know if she ever became a guidance counselor, because my career was cut short soon after, but I am getting ahead of myself.  

My boyfriend Rob and I had been dating since 2009. We met at a camp where we were both counselors. We were married on April 18, 2015.  

Rob and I went to Ireland for our honeymoon.  We had a fabulous time and it gave us a chance to relax and unwind after the work involved with planning our wedding. We stayed at a renovated castle that had been turned into a hotel. It was very cool, just outside of Dublin.  We took several bus trips, including to Northern Ireland to see the Giants’ Causeway. It’s an amazing place with all of these hexagonal stones that were formed by lava, and there is a legend that it was built by two giants. It was really strange, but also the most beautiful place that I’ve ever been. We also saw the King’s Road from Game of Thrones which has these big rows of twisted and bent trees. It felt so magical to be there. I was in awe, like I had been transported back in time. 

One of the highlights of the trip was the many discussions we had about the future. We both wanted to have children but not right away as we wanted to travel.  We talked about trips we wanted to take and even names for our future children. We were excited to start our life together.  It was sunny and mild all week. When Rob got a cold, I attributed it to his tendency to touch all kinds of buttons in public—elevator buttons, and crosswalk buttons, which he didn’t even have to touch. I kept telling him to wash his hands or use Purell after button pushing, but he wouldn’t.  Then one day I got the same cold. I developed a cough that didn’t respond to over-the-counter medication.  Rob started to feel much better, but I did not.   

When we returned home, I still had the lingering cough, but I wasn’t that concerned. I called my doctor, and she prescribed a low dose of Prednisone.  One night I had a new symptom: a pain in my neck. The next morning it had spread to my back.  I thought I must have pulled a muscle moving boxes to our new apartment. I was getting ready for work, so I set out my clothes for the day. I figured a hot shower would help, but it didn’t. Then I tried to take a Prednisone pill and I couldn’t swallow it. At that point, I panicked and ran to Rob to tell him. As I spoke, my arms went numb. I thought it would pass, so I told Rob I was going to work.  He said, “No, you’re going to the hospital.” He was very supportive, and he did not want me to drive myself.  

I still didn’t think it was a big deal. I thought that when I got to the hospital, they would tell me what was wrong, give me some kind of treatment and I could get back to work.  In the ER, I described my symptoms: My body felt really strange; everything seemed to hurt.  I felt like I was going to pass out and felt extremely hot.  My symptoms and anxiety level continued to increase.  Eventually, after a lot of tests one of the doctors said, “I’m sorry. I think I know what this is. It’s called Guillain-Barré Syndrome, or GBS.”  I felt as if I had pitched forward into darkness. By three o’clock that afternoon, I couldn’t breathe on my own, and I was placed on a ventilator. At that point, I think it was worse for Rob and my family seeing what was happening than it was for me. I sort of blacked out. I was 26 years old and fighting for my life. 

I was then put in a medically induced coma for 7 weeks as they tried to stabilize me.  The next thing I remember I was at Spaulding Cambridge and was hearing my mother’s voice reading my favorite Harry Potter book to me but I was unable to move or speak. At one point, I woke up, still heavily medicated, and looked at her.  I shook my head. My mother said, “Do you want me to stop reading?”  and I nodded my head, “yes.” That was the first time I was able to communicate.  

I was still unable to speak due to the ventilator. This was a very hard time for me. Communication was difficult but I always felt my mom’s presence and this was a gift to me. I couldn’t talk with the trach, but finally they said we could try leak speech. Leak speech is what they called it when they deflated the tracheotomy balloon enough that I could talk through the “leak.” I was so freaking relieved! Just to be able to talk for short periods! I never realized before this how frustrating it is not to be understood. 

After many weeks, I was finally able to lift my head on my own.  Everyone was in tears.  I felt overwhelmed by the emotional reaction.  My mom never left my side. Sometime in July our wedding proofs came in. Rob said we had to pick out the pictures for our wedding album.  I tried, but they looked too blurry even with my glasses. I told Rob and my mom to describe each picture, and we would decide whether to include it in the album. One picture was of me and my best friend, Emma. I wore a big Disney princess dress with a sweetheart neckline, the kind I never thought I would wear. Instead of a veil, I wore a pretty headband that matched my dress perfectly. Emma was one of my maids of honor, along with my sister.  

Since I had arrived at Spaulding Cambridge, I had been having hallucinations. One night, I called Rob because I thought the nurses had left me in the parking lot of the CVS near our house. Another time, I was upset because I thought the nurses were putting my pillows into a pool that was in my room. Finally, one night I couldn’t see, just total darkness. Finally, they sent me to Mass General where they performed an MRI which showed that my central nervous system was under attack.  Mom said that the MRI images showed that my brain and spinal cord were lit up like a Christmas tree. It seemed that my optic nerve was impacted the most. They sent me to Mass Eye and Ear where a doctor told me I was blind. I couldn’t understand what he was saying…He said it so matter of fact, like he was telling me I had a cavity, but it meant my whole life would change. I kept thinking, “How can all this be happening to me? I am only 26 years old!” Asking “Why me?” was useless, as the doctors really had no answers.  They ended up calling it “GBS Plus Plus,” which made no sense to me at all. Plus what? Eventually, the doctors told me that they think what I really had was ADEM, Acute disseminated encephalomyelitis. Unfortunately, this diagnosis came too late to do anything to reverse the condition. 

Due to the acquired brain injury from the second attach, I couldn’t remember how to spell things, and I couldn’t count to ten. I could only count to about three and couldn’t think what came after that. It made me frustrated so I stopped trying. I would just tell them, “I’m sorry, I can’t do it.”  I couldn’t tell you the date I was born. But I can tell you that my best friend, Emma, was an integral part of my healing. Emma came to every hospital that I was in. 

After about a month, they transferred me to Spaulding Charlestown, where I stayed for 6 weeks. They don’t let you stay very long. There was a big meeting with all of my therapists, Rob, and my parents. They determined that they couldn’t do anything further for me, so they took out my trach and my feeding tube and sent me home. I said, “But I can’t walk yet!” I didn’t really understand that I was permanently paralyzed because when they had first told me about it, I was still medicated and couldn’t take it in, even though they thought I understood. No one answered me. I felt the room go silent.  

Rob was adamant about keeping me home and taking care of me. So, he found an apartment building with an elevator and we moved in. I felt very lucky to have him. One time, we were listening to our favorite band, Matt & Kim, and I wanted to dance. He unbuckled me from the chair and lifted me up. He put me on his feet and held me and we danced.  

Rob hired PCAs to take care of me when he was at work, and we got along with them really well. We would hang out, laugh, play games. I felt happy. I thought, OK, we can do this. One year after our marriage, we celebrated our anniversary by having our baker recreate the top tier of our wedding cake.  

At one point, Rob asked me if it would be OK if he enrolled in an improv class. He was asking because of the cost. I said, sure, that was fine. I wanted him to have a life outside of taking care of me. I didn’t know that he had asked his mom to hang out with me every Saturday, which she did. I think he had a taste of freedom.  He also asked my mom to stay with me every Sunday. She said no, because she felt like he needed to spend one day with his wife. He was really angry at her. I had no idea. 

Rob did not want to hire a PCA for the nighttime, even though I kept begging him to. I didn’t like to wake him up if I needed something at night because I knew he had to work in the morning. If I did wake him up to ask him for water, he would give me the water, but he would keep saying, “Are you done yet? Are you done yet?” So, I felt like I had to stop drinking and was not getting enough water at all. One time, at the hospital, they said they could not do my Rituximab infusion because I was so dehydrated. They had to give me a ton of fluids. Rob was angry with the nurse. He kept yelling at the nurse, saying, “I can take care of her.” They were getting ready to call security on him. I felt nervous, like, “Who is this angry guy?” I didn’t know what was going to happen. At one point, after that, Rob asked me, “Do you think I’m doing OK?” I said, “Of course!” But, that was a bold faced lie. 

That’s when everything seemed to change. One day my friend Amy asked me if everything was Ok between me and Rob. I said, “Yes, why?” She said, “because he is not wearing his wedding ring.” When I confronted him, he said, “Who told you?” I was so angry— like he thought I would never find out just because I was blind. But, I did, because I have good friends. I was really pissed off. I asked him to set up an appointment for counseling. He said he would but he never did.  One day, out of the blue, he said, “I’m thinking about leaving you.” I was so shocked. I felt like I had been punched in the gut and had the wind knocked out of me. I felt my heart sink like when you look down from the top of a roller coaster. I asked him why, but he just repeated that he was thinking about leaving me. He couldn’t give me an honest answer. I found out through my lawyer that Rob had filed for divorce without my knowledge.  

I kept losing things. I lost my job. I had lost my sight. I lost my ability to move. I lost my husband. I thought I did everything right to have a good future, but I felt like a failure. I had the whole picture of our lives in my head—good jobs, a house, a dog, kids. I wanted Rob to be a good man and stay with me, but he wouldn’t, and I realized I couldn’t force him to. 

At this point, my mom was already making arrangements to bring me home, because she knew he was going to leave me. She and my dad had a ramp and an accessible bathroom added to their house. The study on the first floor was the only place that would work for my bedroom so they set that up for me. 

I was there for four years. For months, I was so depressed I wanted to die. I didn’t want to be in a wheelchair the rest of my life. I cursed God and the doctors for saving me. Then Covid happened. One of my PCA’s was infected and spread it to my whole family. I spent 42 days in the hospital. I was terrified and didn’t want to die. Gradually, I recovered, but I had no place to go. I could not stay in the hospital any longer; they needed my bed. I couldn’t go home, since my family was sick, too. My dad, who also spent time in the hospital, had long Covid. I went to one nursing home for a week and then came to The Boston Home (TBH), where I was greeted by Kristy Ford.  

I was super scared. I had no idea how I got here. I thought that I would be going home once my parents got well. I didn’t understand that this wasn’t temporary. I was really angry and grieving, sobbing and crying. I felt completely lost. I didn’t know who was feeding me, touching me, or anything. It was a terrifying experience. I couldn’t believe I was in a nursing home at age 32. I had a meeting with Christine Reilly, the CEO, because I was having a difficult transition. She told me that if I wanted to stay, I needed to make some changes.  That’s when I learned how to recognize the staff by the sound of their voices. I was always good at names and faces, but without sight I had to figure out what to do. I had to rally real fast. Once I learned the flow here, I began to attach names to the voices of the residents, too, which helped me to make friends faster. 

It was Kristy who invited me to Writing Group, where I started to write prose and poetry. It was a therapeutic experience. I finally had several poems published this year by Origami Poems Project. I was over the moon! Then I started painting. I entered my first TBH Art Show in September, 2022, where I sold my first painting. I had heard about The Art Show the previous year, and knew I wanted to be part of it, but when I first asked about joining the watercolor class, they weren’t sure how to make it happen. Then a student from Lesley University, named Madeline, who was doing an internship at The Boston Home started helping me paint one-on-one. When her internship finished, I began painting with Maddy Hoy, who had joined the activities staff. Because I was not always blind, I can envision the scenes and colors in my mind’s eye, and then Maddy mixes the paint colors I describe—like Luna Moth Green or Indigo Blue. I still dream in color. Together with Maddy, we determined that my left arm is better for painting, even though I was right handed. Maddy will help me to position my hand by telling me if I need to move my brush closer to the canvas or to the left or right. The first painting I sold was called Sunrise Sunset. I was ecstatic and ready to keep painting. I have sold several paintings since. I dictate my poems. The first one I wrote was called Floating Head. I wanted to describe how it felt to not feel half my body. I felt like a ghost. I wanted to get that message across. Now Christine Reilly uses Floating Head in her staff trainings!  

I would never be a published writer or an accomplished artist if I had not been here. The creative arts at TBH saved my life and helped me to blossom. I realized that being in a wheelchair is not that bad because I can still achieve more, and I am surrounded by people in the same situation, who understand. It is not lost on me that the book my mom read to me when I was in a coma was Harry Potter, “the boy who lived.” I may not be a wizard like him, but I am Beth Fournier, the girl who lived.  

By Anne Betschart

I was born in October 1961, joining my two sisters Kathy and Susan. The only unusual event of my birth was that a few hours after my arrival, my cousin Teddy was born in the same maternity ward. My parents had just purchased a new home in the town of Natick. We were the American dream. Happily married couple, children, home in the suburbs…success!

In the months that followed, Mom and Dad noticed I wasn’t hitting the normal milestones of infancy. Sitting, rolling, and crawling were proving to be very difficult for me. After evaluation and testing, I was diagnosed with cerebral palsy. My case appeared to be hemiplegia, affecting only my left side. As an adult, I would explain my disability as follows:

Cerebral Palsy is an injury, not a disease. It is caused by a lack of oxygen to the brain, often during your own birth. Like a stroke, the amount of damage varies. Since my diagnosis came well into my first year, the cause remains unknown.

My case is reasonably mild--a weak left side with poor motor skills. 

Cognition, speech, and right-sided motor skills are considered normal. As a girl, the outward signs of my disability were a significant limp and a left foot that turned inward. I wore an uncomfortable brace in an attempt to correct it. Even as a child, this shoe-obsessed girl recognized the cruelty of not having cute shoes! Every evening, Dad would help stretch out my spastic leg and foot muscles. It was a practice I both loved and hated. Loved because I had private time with Dad, hated because he had to work hard to get those stiff muscles to loosen up. 

So, there we were. Dad sitting in his comfy chair, smoking a Viceroy cigarette, me sitting on the floor with my leg extended, getting the 1960s version of home physical therapy. Dad was my hero. A pillar of strength who was so devoted to his wife and children. The best version of a girl dad that ever existed! During this time, my parents welcomed 4 more daughters to our family. 18 months after my birth, Kristin was born. A year after that, twins Maureen and Jean. A few years later, Colleen rounded out our house of little women.

The twins were born with Down Syndrome and in very poor health. They had severe cardiac issues and were too ill to live at home. We lost Jean at age 1. Maureen passed away at age 4. 

My parents had to experience crushing grief while also raising five daughters, one with a significant disability. I was too young to understand, but it must have felt unbearable for them

We resume life as a family of 7. 

Daily, my sisters and I would get up, eat breakfast, and join our friends and neighbors on the walk to Brown School. I enjoyed school until the name-calling started in first grade, beginning with “Peg Leg” and later turning to “Gimp,” muttered to me as kids passed me in the hallways. I pretended I didn’t hear. Day after day, year after year, these painful comments eroded my self-esteem and confidence. I tried to talk with my parents about it, but they would tell me that I was fine and could be just like everyone else. “Just ignore it” was their advice. My concerns were unheard, so I stopped trying to express them. My insecurities grew and festered and are still part of my personality today. 

My parents had the best of intentions. They always included me, but things had to be modified.

 I remember a cold winter day when we went to Uncle Paul’s home on the lake. The whole family bundled up for a day of skating. I was told that I could join everyone on the ice, but skates would not be allowed. “Put your boots on and watch.” I felt so left out. My sisters looked so free and beautiful, gliding around the ice. It triggered a thought that I carry to this day. I will never be graceful. Things will never feel carefree and easy. It crushed me.

In 5th grade, students could select an instrument with hopes of joining the concert band. I was excited. Big sister Kathy could sing, and Susan excelled on her flute. What would my talent be? My parents had the difficult task of telling me that my options were few because of the limited use of my left hand. Dad had a great idea. As a child, he was stricken with polio. After a lengthy hospital stay, he needed to improve his lung strength. He used a trumpet to achieve that goal. He kept the instrument and realized it would be a successful option for me. My left arm was strong enough to hold the trumpet and the fingers on my stronger right side could easily press the three valves. 

So, I took my hand-me-down trumpet and had enough lessons to become a band member. Eager 5th-grade musicians joining our 6th-grade peers was a thrill. I saw all the girls sitting together with their shiny new flutes and clarinets. I was tucked into the 2nd row of trumpets, the only girl with boys sitting in front of, beside and behind me. The same boys who teased me in the classroom now had their victim surrounded on all sides. I wanted to quit, but we had a rule in our house. We had to honor our commitments. So, I played in the band for the remainder of the year, but stopped after that, never playing an instrument again. 

A few years later I was not able to take the required typing class. Lack of fine motor skills prevented it. 

My frustration with school continued. In high school, I realized a clever trick. I would use my disability to convince my gym teacher that physical education was hard. I was rewarded with a free period! Yes, I manipulated, but it saved me the embarrassment of everyone seeing the clumsy uncoordinated girl who would never be good at sports.

Mom and Dad recognized that I was emotionally lost. They told me that they felt like a smaller school might give me a fresh start. Entering my junior year, I relocated to a small catholic school one town over.  I made a few friends. They would pick me up and we would loaf around with little purpose or motivation. We would disregard curfew, sneak cigarettes and booze. This circle of friends provided something I desperately craved. Acceptance. I didn’t have to compete with my smart, graceful talented sisters. I didn’t have to be an onlooker of the cool kids in school who dismissed me as Gimp. 

Fortunately, I survived those tumultuous years. My teenage troubles never escalated to real danger, just enough to infuriate and frustrate my parents.

In 1979, I graduated from high school and was accepted to Framingham State College, but only lasted one semester. School was so traumatic for me. I wanted to leave that behind and join the adult world. My next step was to become a bank teller. It was a respectable job, and I was good at it.

Within a few years I was married and expecting our first child. My childhood home of little women morphed into the home of My Three Sons. Raising the boys was my purpose. My reason for living. Their well-being was my one and only concern. These active children kept me busy and focused. I rarely thought about my cerebral palsy. When they were young, I ran a home daycare. As they grew, I took a job as an administrative assistant at our local high school. My children attended this school. I feared that my bully names might resurface. Would my boys be known as Gimps kids? To my relief and delight, the name that stuck was “Mama Betzz”. My name was now a term of endearment!

My active boys kept our family busy for 20 years. Unknown to the kids, trouble was brewing in my marriage. Neither of us had the desire to fight for it. With two kids in college and one in high school, Doug and I agreed to separate. I would spend my free time working out and “walking off” my divorce. My body and psyche felt strong and renewed.  

Time passed and in my late 40’s I started to experience groin pain. Forty-nine years of walking with a limp had wreaked havoc on my left hip joint. I needed a hip replacement. On a warm April day in 2013, new titanium hardware replaced my overworked bones. After 6 weeks of recovery and physical therapy, I returned to work healthy and refreshed. This renewal would be short-lived. 

While sitting at work one day, I noticed that my right leg felt numb and when I walked, I needed the bookshelves to support me. A few days later, I reported for my duty as site manager for a varsity soccer game. For years, I would grab my folding chair and binder and oversee high school athletics. This girl who could never participate in sports was tasked with overseeing our young athletes as they competed in theirs. Still numb, I struggled getting on and off the field. After several weeks of this, alarm bells were ringing in my head. 

Over the next two years, I would fall three times at work. The numbness was constant. It was also becoming difficult for me to lift my leg into my car. I contacted the surgeon who did my hip replacement. He quickly scheduled an appointment and x-rays. He told me that my surgery and follow-up exams indicated no signs of complications. He referred me to a neurologist. This would trigger a merry-go-round of doctors and diagnoses. Here’s a sample:

Neurologist #1:

The MRI indicates that you have lesions, but they look old. Most likely related to your CP. I believe you are suffering from a pinched nerve. Probably the result of a different walking gait after the hip replacement. I’m sending you for physical therapy and to a physiatrist (a physiatrist? This is the first time I’ve heard this term).

Physiatrist:

No, it doesn’t look like a pinched nerve. It’s obvious to me that you have cerebral palsy on your right side. She’s not particularly interested when I say that these are new symptoms. In my 50+ years on Earth, no one has ever suspected CP on my right side. She prescribes baclofen and 6 more weeks of physical therapy. She also advises me to put a one-inch lift on my left shoe to compensate for leg length discrepancy. I disagree with her assessment but adhere to her advice. 

The year is now 2014. My three sons are grown men. Michael is living in Rhode Island engaged to be married. Tommy lives in Florida and Christopher lives in South Carolina. In July, they meet to celebrate Michael’s bachelor party. They express serious concern when seeing first-hand how I am struggling. When they return in September for the wedding, their concern elevates to alarm.  I am supposed to walk myself down the aisle as part of the wedding party, but during the rehearsal, as I begin the march, it becomes clear to everyone that I am unable to do so with no walls or cane to rely on. An immediate change is made. For stability, I have to forgo the cute new sandals I purchased for the occasion and wear my dirty sneakers instead. I plead with the photographer to make sure my feet are not visible in pictures, and I am grateful that I chose to wear a full-length dress to hide them. My two sons, the best men, walk on either side of me. They offer their arms to me, and I hang on for dear life. I am so very sad but try to hide it because this is the happiest day of Michael's life. 

As the mother of the groom, I was looking forward to sharing a dance with Michael. He had asked me to select the song. I chose “My Wish” by Rascal Flatts. He escorts me to the dance floor. We begin, simply swaying to the beat as he holds me up. It is a tender moment tainted by the stark realization that something is seriously wrong. Fear and devastation wash over me. Both Tommy and Chris decide to move back to Massachusetts, recognizing that I need care. This decision brings all three of my children close to home. They become an integral part of my support system.

As the year winds down, my right leg continues to feel numb and that sensation spreads to my abdomen. Walking is getting more difficult. I rely on a quad cane for support. After work, I struggle to get to my car. Once there, I need to hoist my right leg into the vehicle. The spasticity fights me. I tie a scarf around my thigh to use as a hoist. One day, on the road, I realize I can’t safely move my right leg from the gas pedal to the brake. Driving is no longer safe. I have no diagnosis and an uncertain future. I am terrified. As a single woman, my job is essential for my finances. I request a leave of absence and am pleased to learn that I have amassed enough sick time to afford several paid months off. On New Year’s Day 2015, I woke up with a high fever and flu-like symptoms. I try to stand and move. It’s an impossible feat. Home alone and terrified, I reach out to a neighbor. She comes over and waits with me for an ambulance.

An MRI reveals new lesions. Finally, years after my first symptom, I have a diagnosis. I have multiple sclerosis. 

MS appears to have attacked my right leg only. It feels like a cruel twist of fate that I have dual disabilities on opposite sides of my body. The symptoms compete for my attention. I struggle with strong spasms. The ones on my left CP side cause my muscles to recoil. The ones on my right MS side cause my leg to straighten and stiffen to the point of pain. I grow more and more dependent on a wheelchair.  Remember that left hand that couldn’t play an instrument or type? It also lacks the strength needed to propel me in the manual chair. Eventually, my doctor convinced me to get a power wheelchair. It breaks my heart but provides much-needed independence. I get by.

The pandemic shifted the balance. It became impossible to find help, and I was isolated, unable to care for myself. My family was very worried.  My neurologist suggested that I look into admission at The Boston Home. This idea overwhelmed me. I could not imagine leaving behind the familiarity of my chosen hometown. Needing the care of a skilled nursing facility left me feeling defeated. Next came a hard-to-hear, tough love conversation with my son. He told me that my loved ones were very worried about me and did not think I should live on my own. This was difficult to hear, but I appreciated his honesty. Begrudgingly, I applied, expecting to be placed on a lengthy waitlist. To my surprise, there was an immediate opening. On a warm August day in 2022, I became a Boston Home resident.  

Now this girl from the suburbs is learning to be a city girl. I have friends here who encourage me to hop on the “T” and explore the wonderful culture around us. I have a dual disability and dual emotions. I allow myself to feel sorrow for what has been a lifetime of challenges. I don’t know if it will ever feel completely comfortable living in a skilled nursing facility. I dream of a time when I can return to independence. If that day never comes, I will find joy in new experiences. I celebrate my incredible support system. My Mom and sisters are constant cheerleaders. A few of them join me for lunch once a month after my infusion. My boys visit me often. A tremendous joy has been watching them all become Dads. My family has grown to include 3 loving daughters-in-law and 4 grandchildren.  Life is good!

By Kristine Schiebel

At 23, I felt rebellious. Living in Albany, working in a corporate job, it was dark and gloomy. My college friends had told me about Provincetown, so, in May 1997, I decided to quit my job and look for summer employment in this beautiful beach resort. The summer job I found working at a B & B turned into a year-round property manager position at a small cottage colony. I became a Massachusetts resident. 

I built a life for myself there. I fell in love, made friends, and found community in this small, friendly town. I loved Cape Cod and the ocean. It seemed life could not get any better.

 In October of 2002, when I was 29 years old, I was out with friends celebrating the end of the very hectic tourism season. We were dancing at the Atlantic House, the oldest bar in Provincetown when I suddenly had a dizzy spell and fell. I attributed it to maybe having had a couple of cocktails. It was unusual, but at that age, I was still partying, maybe too much. 

The following weekend, my sister invited me to Killington, VT for the weekend to celebrate her birthday. My parents were going to be there. My family had always been close-knit. Driving up, I noticed that I was feeling some vertigo, not to mention that my right hand and right arm were tingling. With the excitement of seeing family, I hoped it would pass, attributing it to the elevation of Killington. But by the end of the weekend, I knew this wasn’t true. I had to hold on to a railing just to walk down a few stairs. I didn’t tell my family what I was experiencing, because I did not want to burden them. My mother, especially, had always been doting and tended to over-worry. 

On arriving home, I immediately made an appointment with my GP. He ordered an MRI at Cape Cod Hospital. He said that it was definitely related to my central nervous system and brain, which made me very fearful that I had a brain tumor. My right eye was painful and flickering as well, and my vision was diminished. Then, I developed numbness in my right arm, followed by weakness in my legs and more vertigo. It was fear that crippled most. I was too scared to ask questions. I wanted to stay in denial. I was so young then. I didn’t have the strength to respond to what was happening. I felt like a child, helpless, wanting to hide in a corner.

After waiting a whole weekend, my doctor finally told me the results of the MRI: probable MS. My first thought—for two seconds—was tiny relief that I did not have a brain tumor, but seconds later, I broke down, because this was life-altering news. Upon receiving the diagnosis, I told my partner, Carrie, that she did not have to go through this. I felt guilty, and that it was unfair to her. We were both so young. She deserved to live her life. I would understand if she left. She said, “Absolutely not. I am here for you.” I felt the power of unconditional love—it was immense. So, we put forth our strength. We were ready to fight. 

At that time, Carrie and I were caretakers of a ten-cottage colony unit. I quickly retired from such a rigorous and physical job. Carrie was by my side throughout the first year of my treatment. She drove me weekly to Beth Israel Hospital in Boston for the first month of my IV treatment. Luckily, we found help on the Cape and received home VNA services. I quickly realized how lucky I was to have a loving partner and family support. Friends came over often. We had potluck dinners. I knew I had a long road ahead, but I felt confident surrounded by friendship and love. 

By the following spring, my second consecutive flare-up of MS led to bilateral optic neuritis, present in only 5-8% of MS patients. It rendered me legally blind with one eye at 400/20 and the other at 200/20. This prompted my doctor to recommend Cytoxan, a chemotherapy drug used for patients with aggressive MS. This would kill those nasty white blood cells that were aggressively attacking the protective myelin around the nerves in my brain! It worked. I had won the first war. I lost some hair, which was not good, and some weight, which was good. I felt empowered.

By July, I had another MRI and the results were good. Many lesions had gone down, if not receded completely, and amazingly I regained some of my vision. Wow! I think I saved some serious brain damage. I remember calling my mother to tell her the good news, and I could hear a faint cry in her voice, which surprised me. I suppose I had taken her love for granted. My mom and I became closer. She would call me a lot, and check up on me. She would say, “Carrie is your rock. I am happy that you have someone.” That moved me. She would ask how I was eating and suggest foods. She would tell me about the latest research she and Dad had read about in the New York Times. It emphasized her love for me.

Here I was, with my body back and knowing that time was precious. As I have learned, this disease is progressive. I would never take anything for granted, or anyone. I could stand up straight, and walk, and I was running. Running down the beach, taking in all of that sea air. I was going to make it.

Inspired by this recovery, I took control and researched what to eat to nourish my body and feel good. I became neurotic about food, eating plenty of fruit and fish, which are plentiful in Provincetown. I ran half an hour every day and went to the gym six days a week. I learned how beneficial it is to maintain strength and endurance, and a nice body. I could no longer drive, so my bicycle became my transportation until I could no longer use my legs. I learned about other healing techniques and practices, including yoga, and I would practice on a daily basis. I overdid it with yoga mats everywhere in the apartment, which drove Carrie crazy.

In 2004, we moved to a more convenient and quieter apartment in town. At that time, there were not many options for treatment, so I was on an interferon drug. Once a week, Carrie would stab me with my IV injection of Avonex. The only side effects turned out to be a headache and fatigue. Whatever—just like waking up with a hangover and the next day I would feel fine. Then, I found out that it only has a 33% efficacy. It turned out that it also elevated my liver enzymes. My GP in town said, “Are you still partying a lot? Your liver enzymes are through the roof!” That comment made me angry. She knew I was sick, and working so hard to fight this disease. I had never partied enough to elevate my liver enzymes. My neurologist started me on Copaxone instead of the interferon, but this drug also had low efficacy. 

So, I decided to take matters into my own hands, knowing that I would have this disease my whole life. I found out that acupuncture is helpful. I eliminated dairy and gluten from my diet, exercised, and prayed. Yes, I became spiritual. I guess you could call that the gift of desperation—God. Talk about something that brings you to your knees! Having been raised Catholic, I returned to my faith. I knew it had been there for me before, and would be there for me now. I feel like my beautiful life was synchronistic—coming to Massachusetts, moving to Provincetown, and meeting my first love. If that had not happened, I would not be in Massachusetts with the best healthcare and insurance for people with disabilities. I really don’t think that I would be here without spirituality. You have to believe in something bigger than yourself. 

By the end of summer 2004, I made the decision to go back to work, as I was denied disability the first time. Yes, I know 30 is too young to apply for SSDI, but the optic neuritis had left me legally blind. My eyes had healed to 20/60 with transient blurriness. Carrie got me a job at her magazine doing secretarial work. The job increased my confidence but did nothing for our relationship. Still, I was proud that I had completed a whole season at the town’s local magazine, using my voice and my personality.

It had been clear by the early part of 2005 that Carrie and I were approaching the end of our chapter. After 8 years together, we decided to end our relationship as amicably as possible. I rented a room in a friend’s house. 

In November 2006, I was invited to a potluck by a friend from work. I was introduced to Heather, the daughter of the host. She asked who brought the sushi. I said I did because I didn’t have time to do anything, and we laughed. I felt strong, showing no signs of MS. A social, healthy 33-year-old. 

In the back of my mind, I would ask myself why I was still partying. I should be grateful to be stable. Kristine, WTF! I should stop drinking, and eat better. Who was I fooling? I was strong but taking it for granted—like a college kid partying it up every night.

But what saved me was that Heather was very much invested in my MS. I told her on our first date on December 15, 2006. She responded that she had a similar neurological episode happen to her. We bonded over it. She fortunately did not have MS and did not care at all about my disclosure. How lucky was I? 

Heather was instrumental in getting me to a better place because with love anything is possible. I stopped drinking. She was my biggest cheerleader and supportive of my new health regimen, no partying and staying healthy. We had lots of fun together. From the time that I met Heather, I had been on 3-4 different medications, during which I was deteriorating physically. She was always there to catch me, literally, to hold me up and stay strong, keep fighting. She took me to every appointment, and when she couldn’t, her mother, Ellie, did. I inherited a mother-in-law. She came with the package. I became very close to Ellie, and she joined my MS care team. Just knowing that you are not alone is everything. I continued to fight my MS with a new treatment called Rituxan. 

Fast forward: On my 40th birthday, I went to a neurology appointment, accompanied by Heather and my sister Kara. We were planning to go for a celebratory lunch afterward. Unfortunately, after testing my strength, and seeing me walk, my neurologist declared me to have secondary progressive MS. Reality set in at that point. Happy birthday to me. 

Luckily, I had the comfort of Kara and Heather and the security that they would be there for me. So, I focused on having something to look forward to. Heather surprised me with a trip to Sedona, Arizona, which was amazing and beautiful. With the lack of humidity there, I was able to walk 20 yards, which was new for me at that time. Something small to celebrate, even though I knew it would not last. Forcing me to stay in the moment and enjoy it.

By summertime, I was officially using a walker and a mobility scooter, accepting the state of my disease, knowing I had support and love. I still wanted to be part of life. I wasn’t ready to throw in the towel and isolate myself in a prison of disability and disease. I worked during the summer as a hostess at a restaurant. I always loved working with people. I felt empowered and strong. This was my town. 

I knew I was pushing myself, especially in the summer heat. Heather would drive by the restaurant and throw me an ice pack. So sweet. It helped and I got through it. It made me stronger. Every day, I would say, “Not today, MS. You’re not going to get me today.”

Six months later, I had a second Rituxan infusion. Heather could not accompany me, but her mother did. I felt comforted and loved. Heather called me that night to see how the appointment went. I noticed that she did not sound good—weak, tired, and slurred speech. I did not have a good feeling at all. I thought, there had been so much focus on me. I need to tell Heather to take care of herself. 

The next morning, I woke up panicked, and a little dizzy. I thought it was because of the infusion. A few minutes later, I got a call from Heather’s phone number. My chest sank because it was not Heather. It was a friend of her mother’s. The voice said, “Kristine, are you sitting down?” Nervous laughter-of course I was sitting down! She proceeded to tell me that Heather had passed away. 

I was frozen, paralyzed with my mouth open, trying to say, “What?” and then hanging up. My friend took me to Heather’s mother right away. That’s when I finally lost it, crying uncontrollably. Apparently, it was a brain aneurysm that occurred overnight. Ellie was never able to give me the full details. We did stay in touch and had weekly lunches, for a while. In the meantime, while trying to grieve, I had to figure out my life so I could at least get by for the next few months. I sought out help to stabilize my mental health and at least keep me living at home. During this time, a friend of mine had lost her job and housing, so I said that she could live with me, thinking it would be a win/win as she could help me with my daily care. I had no time to make decisions. I was just determined to stay in my home, so I made my friend Mary my caregiver and we signed up for the adult foster program. It was soon clear that I had made the wrong decision. She was controlling, verbally abusive, physically threatened me on one occasion, and kept me from seeing my friends. When my sister Kara came to visit, she opened my eyes to the reality that I had to get out of this unhealthy situation. 

I thought to myself, I still have my voice and my mind. I am not going to let this woman ruin what is left of my life. With the help of my therapist and Kara, I found the courage to stand up for myself. My breaking point came one day when Mary was being unnecessarily rude and ruthless. I said: “You need me more than I need you!” and told her I could not live like that. It jolted me into action. I was surfing online for options other than the geriatric nursing homes, where Mary had occasionally threatened to drop me off. I typed “MS long-term care” and found The Boston Home. My social worker confirmed that it was a great place and said she would recommend me. I was scared of leaving my home of twenty years and the few people that I still had in town, but I also felt hopeful.

I had been in a very dark place. Losing the love of my life and my disease quickly deteriorating had left me isolated. I no longer had Heather, but I remembered her telling me: “You don’t have to live imprisoned in that little apartment.”  Her love carried forth as I made the decision to make some changes. I gave it over to God, and thought, if there is a space available, then it is meant to be.

Upon receiving the news that I was accepted to The Boston Home, I had a mix of excitement and fear. After being so dependent on one person and living in a small town, this would be where the strength and courage that I had bound up in me would need to come out. Miraculously, within 8 months, Lucille welcomed me with such love and compassion. Just another reminder to never throw in the towel when you think you are at the end of your rope. This would be my new home, where I could feel myself on my own wheels or whatever. When I first moved here, you should have seen me. I would zip down the halls to feel the wind in my hair.

I made some friends, laughed and commiserated. There is always room for growth in every situation. It was refreshing to be around folks who had been through a similar journey/nightmare rollercoaster of MS. Everything about MS and the possibility of healing and recovery had taken over my life for the past 20 years. Now, I could just relax in my own space and with my own people, even if we did say “F. it!” sometimes. Unity would be our strength— a renewal of strength just like after my remitting from my first MS attack.

Being disabled, my biggest fear was losing my power because I felt like my power was in my body. But, I realized that as long as I had my mind and my voice, I could regain the power I thought I had lost. I learned to hold on to my power and use my voice. “Always remember that your present situation is not your final destination. The best is yet to come.” Never give up. Stay strong. Have faith.

By Margaret Marie

I was born to teenage parents in Brookline back in 1956.  My mother dropped out of high school, my father joined the Marines for two years, then got a job as a police officer.  Soon after, another baby was on the way.  Neither of my parents were prepared for parenting, adult responsibilities, or marriage. 

My little sister Brenda was always at my side until I went to kindergarten.  I was called “Peggy” back then, and kids teased me, calling me “Eggy.” When I walked home from school, neighborhood boys threatened to kill me if I walked by their house.  I didn’t tell my parents.  I figured they would tell me to go and fight them.  I’d never fought anyone and didn’t want to.  Instead, I walked home singing at the top of my lungs, hoping I would be discovered, and whisked off to Hollywood.  My defiant, booming singing continued until I discovered the library.  There I found refuge from the neighborhood tyrants and befriended the children’s section of books arranged from A to Z with stories and adventures that were a welcome antidote to peril.  Oh, how I loved reading stories that took me to wonderful places again and again.  

Throughout elementary school, I remember my parents always arguing.  My father drank, some, then a lot.  When he got in from work at midnight, he brought his work buddies home, and they’d drink and play cards till early morning.  My mother looked wicked mad and sometimes scared.  Brenda and I would hide in our bedroom, trying to block our ears.  He had a dark side, which gave me the creeps. That he had a weapon locked up in the house wasn’t lost on any of us.  My mom, Brenda, and I were silent about the impacts my father had on us. By twelve, I believed it was up to me to manage my father and protect Brenda.  It took me ten years to be able to speak of this to anyone.  

Suffice it to say that my teenage years were crummy.  My mother and I didn’t get along much.  I couldn’t wait to go to college, though I knew I was on my own to make this happen.  It was a long time before I felt any compassion for my mother’s circumstances or my own.    

When I left for college, I majored in philosophy & read voraciously.  I was very shy and quiet.   I lived by the “two ears, one mouth equation” and am temperamentally a better listener than speaker.  I was fortunate to find my first people - my kin - through friendships with Owen, Steven, and Michele.  We shared a house on the ocean in Winthrop after graduation.  

I soon began working in community mental health when they were emptying state psychiatric hospitals. In my first job, I was the weekend live-in counselor at a group home in Newton.  After a year, weary of weekend work, I got a job as a group home director in Dorchester (just 2.5 miles from The Boston Home). Nancy hired me, but wasn’t my boss, and we became fast friends.  I felt I was on the threshold of a new beginning.  It was a time when people in the mental health field were encouraged to go into therapy.  Like many coworkers I respected, I went into both individual and group treatments.  This wasn’t an easy journey, as I had a lot of issues to unpack.  For several years, I navigated the emotional and physical tsunami of therapies, finding that underneath this stormy edge, lurked waves of terror and sadness. I continued to learn much through reading, work, and eventual social work school.  Slowly the payoffs came, and I felt an emerging maturity and self-knowledge.  How great - to trust myself more.  

After graduate school, I enrolled in a yearlong learning program with seasonal weekend retreats led by a remarkable Buddhist woman.  It was so enriching!  Through meditation, readings, journaling, my personal spiritual inquiry was taking flight.  I felt nascent stirrings of me as wiser as I stretched my personal comfort zone.  I felt stronger all around.  Before, I felt like I was a product of my past experiences, and never imagined I could have internal peace and quiet.  This was a major breakthrough, as I confidently began to embrace my own choices for how I would respond to life’s ups and downs.  

In the meanwhile, Nancy and I had lived together in Cambridge as friends when we were both at Bay Cove. We got involved in relationships with other women, and I moved to Vermont and later Jamaica Plain (JP) with my partner.  These relationships both soured over time.  I settled in a studio apartment in Somerville, and Nancy and I became involved.   Soon, we moved to JP to be closer to public transportation and Simmons School for Social Work.  Eventually, we adopted our first dog, Sam, and life was good overall.  I loved heading to the beach on days off and bicycling along the Emerald Necklace weekend mornings.  We treasured spending time with friends over dinner and enriching conversation.   After Christmas, we’d head to P’town for a week, shake away the leftover holiday season detritus, and spend much desired time together.  Bundled up in winter gear, we’d go for long evening walks, en route to and from Napi’s or Ciro & Sal’s for a luscious dinner, after reading the day away.    We both were in good health and had work we were committed to.  Life was good. 

Fast forward…… 

I was 40 when I was diagnosed with MS. I had foot drop, trouble walking, and fatigue. When I saw my first neurologist and described the symptoms, he performed a basic exam: walking toe to heel; holding up each limb as he pushed against them; having my eyes follow his fingers; reaching my arms out far and touching my nose.  I felt awkward, self-conscious, clumsy.  His staff scheduled me for an MRI and evoked potential testing.  At my 2nd appointment, I learned that I had Primary Progressive MS.  While I'd heard of MS - I didn't know much of anything about it.  I was fortunate to have this doctor, as he was earnest to learn of my interests.  There were limited treatment options at the time. He was very honest that the research on the available medication options thus far couldn't demonstrate efficacy, but we did try them out, one by one. They didn't bring me any benefit. We met twice yearly to check in and traded books of Japanese literature.  I appreciated his respectful kindness.  

Over the next six years, my ability to walk deteriorated and I needed to rely on a cane, then a walker, and eventually a scooter.  Each change was an adjustment, but I appreciated that they were necessary for me to retain my independence and safety.  I applied to the Mass Rehabilitation Commission for support to enable me to continue working.  They paid for an outdoor lift to be installed in our backyard, so I could get in and out of our house safely. The Greater New England MS Society generously helped me with a grant that paid for our small bathroom to be made into an accessible wet room. Their assistance was invaluable.  

It was tougher to deal with the fatigue and weakness, as they seemed to come on quickly. I had always loved spending time outdoors in the sun, but it became treacherous in short order. I had been working as a social worker at Beverly Hospital on their adult inpatient psychiatric service for two years when I realized I could no longer work full time. I changed to part-time, worked out a job share, but eventually had to leave altogether when I could no longer drive. 

I think that my attitude about having MS has been informed by all the work I did in therapy, building a spiritual practice, the chosen family I built over time, and how I learned to live intentionally.  I was committed to focusing on living each day fully and actively and choosing to keep company with positivity and possibility. I was determined to not have MS define who I am and was open to allowing a bit of denial to help me along.  Also, I had worked with adults with Serious Mental Illness for 24 years as a Crisis Clinician, in several psychiatric inpatient units, and at Bridgewater State Hospital.  I knew that many people live with extensive suffering.  My experiences were not of this magnitude by any measure.  I remain humbled by what I learned about despair and courage from these adults and their families.  Collectively, these lessons have served me well in my journey with chronic illness and disability.     

Perhaps most importantly, back then and now, Nancy is “my person” and I am hers.  We have had and continue to share great love.  And, in our early 40s, we decided to expand our family!   Yes, we were pleased to join forces with the Department of Children & Families (DCF) to welcome and adopt a child.  

Nancy and I were both 46, when our daughter, Dorothy, then seven, moved in.  We were so happy to welcome her to our home!  She brought us joy, all the worries new parents have, and such richness.  Until she learned to rollerblade and ride a two-wheeler, she loved riding down the street on the back of my electric wheelchair.   She also loved waking me up in the middle of the night by knocking on my head.  It’s hard to be a scared little girl in a new home, on the heels of several foster homes.  I was so glad she was knocking on my head for support and to be one of her two newly devoted moms.   

I had many medical concerns and crises over the years, but I considered them to be mere “blips:” something occurred that was like a sucker punch - I was knocked down, wiped out, often requiring intensive care - but I bounced back, ready to move forward with living.  I did get seriously ill in 2004 and it was a colossal blip.  June 5th was to be our wedding day and in the darkness of 2 a.m., Nancy awoke to find me feverish and unable to communicate.  The ambulance took us to the Faulkner ED and later a lumbar puncture revealed I had meningitis. Nancy and her sister Terry made calls to friends and family, as I transitioned from acute to critical status. Nancy later described that they were called into a triage room, with a large team of doctors working on me, asking if I would want a priest and/or resuscitation if my heart stopped.   I have no memory of this, or that our friend Chris, the designated officiant of the day, joined us later that day and performed an abbreviated bedside service.  Reportedly, I muttered yes and we were married, while the medical team enjoyed the top tier of our wedding cake lovingly baked by Nancy’s nieces.  Following a week on a medical unit being treated for meningitis and a raging cellulitis infection, I was transferred to a rehab unit at a neighborhood nursing home. I had declined significantly and we needed to set up more supports at home.  Two years later, I moved into The Boston Home. 

I wanted to come to The Boston Home (TBH) before I became a burden to my family. When Nancy and I took a tour of TBH, I smiled throughout the entire visit. There was so much space, the building and grounds were beautiful, and it was a place where people we met seemed to be thriving.  I loved the variety of activities and how family members were always welcome.  It seemed like a place that could offer me more assistance, resources, and a community.  Nancy held back tears throughout the tour, saddened to imagine life in our home without me. She saw only loss - I saw opportunities.   

It seems unbelievable to me that I have lived at TBH for 18 years now.  I was so blessed to have Donna Corbett as my first roommate here, and every day I think of her friendship with a smile.  I have grown to love this community wholeheartedly and have been able to live with much richness and joy here.  The residents and staff together make this place unique, and my family and I are grateful that Dorothy has grown up loving to come here and enjoy the many best friends she has made over the years.  At TBH, I learned to cherish watercolor, to love karaoke, and have shared sacred times in abundance here - with family and friends.  How fortunate I am to have witnessed the bravery and dedication of the team throughout the pandemic years and was so pleased to reunite with beloved friends here when isolation restrictions eased.  

In October 2022, I had aspiration pneumonia and spent two days in the Emergency Department at MGH and because there were no beds, was transferred to the ED at MGH Brigham where they had no beds.  After I had another aspiration in the Brigham ED, I was in acute respiratory failure on 40 liters of Oxygen. They had a vent at the ready.  I learned from Nancy that I got great care from one of the ICU doctors and head of Pulmonology, until a bed became available.  I recall excruciating pain when they worked to get an ABG (arterial blood gas) but remember nothing else throughout my stay at either hospital.   Nancy, my medical providers, and our family were pretty worried.  Since I didn’t remember any of this, I stubbornly wanted to ignore their concerns – as if they were inadmissible hearsay.  I had bounced back. 

This most recent winter was the first time I ever felt completely overwhelmed and afraid when I became ill.  While I have had a wealth of MS related challenges, at 67 years old my ways of coping with its exigencies were no longer available to me.  I was having episodes of confusion and disorientation, and my brain wasn’t functioning well.  Then in April, I got sick fast and it cascaded into acute sepsis and delirium.  I was in the Carney ED and had to be transferred to MGH for a surgical stent placement due to a belligerent kidney stone.  After three days at MGH, I was sent home, arriving here with my Oxygen Saturation level at 50.   Back to Carney’s ED, diagnosed with a pulmonary embolism and acute respiratory failure.  I was sent to the ICU for a week.  Nursing staff repositioned me there, and pain exploded, as my upper arm fractured in two.  (Advanced MS + functional quadriplegia = severe osteoporosis) - AKA “shit happens.”   While I learned later that Nancy was with me throughout these days, all I remember is nightmares and fear reminiscent of Dante’s circles of hell.  Eventually I came out of this precarious state and will forever be grateful for the kindness and expertise of Carney’s ED and ICU teams.  

I may not get the chemistry of the respiratory system in chaos but have come to believe others when they say that hypoxia and CO2 narcosis can result in disorientation, paranoia, delirium, confusion, and nausea. 

My mind defies me as my once comfy room has been altered; there are spies all about; I am unsafe.  Later, I am sequestered on the ground floor with 20 other TBH residents.  There is darkness and risk;  Nancy + Dorothy are on their way.  I can't trust anyone.  I am surrounded by familiar people; but I am isolated.  I feel kin to the elder Inuit women who in times of scarcity were pushed out to treacherous Artic waters to die on their solo ice floe.     

I have had multiple surgeries—for breast cancers, tumors, a volleyball of a fibroid, a tear in my spinal cord, etc. and survived them well.  I have had multiple admissions to ICUs at Carney and MGH. I've had an abundance of medical specialists, pic lines, transfusions, medications and chemo.  I’m well known to the Infectious Disease team at MGH. The Carney ED saved me from death five times. MGH and Brigham and Women's have similarly brought such life-saving expertise. The TBH staff have heroically cared for me through innumerable times of critical need.  We stopped counting a long time ago.  My family and friends describe me like a cat with 29 lives, instead of nine.          

I am weary of the ways in which our complex health care system is cumbersome, inefficient, and ineffective.  When I received care for sepsis and pneumonia in a local hospital’s ED, ICU, and medical unit earlier this September, I had a different doctor every day and night.  They didn’t seem to share much communication with each other, and some didn’t communicate directly with me.  It took three days for them to get me the correct meds for spasms and neuropathy pain.  I was in a new mattress with reportedly “great technology” that used warm heat and a loud fan to keep the mattress particles in continual motion.  It increased my body temperature, I was sweaty, uncomfortable, and too weak to move my one hand that still has a bit of functioning.  The heat triggered painful spasms in my left leg.  They wouldn’t turn it off when I asked them to, given concerns of further skin breakdown.   

I wanted to give up then.  I felt so disrespected, dehumanized, and demoralized.  I don’t think many people can imagine what it is like to be alone and unable to move any part of one’s body – not even to move one finger one inch to reach an accessible call light.  I called Nancy sobbing. She returned to the hospital, reminded the staff I had the right to refuse the high-tech mattress treatment that was making me worse, acknowledged our awareness of the risks, and unplugged the mattress.  She then brought cool facecloths to my head, face, neck, arms, and hands, settled into a chair at the side of my bed for the night, played old favorite songs on YouTube, and we sang and shared stories through the night.  I chose “Don’t Rain on My Parade” to become my new theme song.  In the morning, realizing it was a tough song to sing, I switched to “Oh What a Beautiful Morning” to sing aloud and restore me to my calmer self.  I hereby elect to return to past lessons to live each day I have more fully and positively.   

Here is my commitment list for myself going forward: 

1. I’ve decided to pay attention to the helpers and loved ones I trust, including myself.   

2. Recognizing how helpful it is, I will use my BiPAP machine as faithfully as I can. 

3. I’ve begun listening to Pema Chodron’s most recent book, How We Live is How We Die.   

4. I’m exploring finding a Spiritual Mentor. 

5. I am relishing listening to great music every single day. 

6. I look forward to meeting our family’s new puppy next week.  Her name is Daisy Mari.  We already love her.  We look forward to sharing her with all who shimmer in the presence of a dog’s sweet love and spirit. 

7. I will do my best to keep my heart open, spread kindness, and continue to count my blessings each day.    

By Val Walker

Photo Credit: Kellymlacy

No matter how busily my mind is chattering away, when I spot a blue heron flying over me, I’m suddenly quiet with wonder. I stop and behold the grace of the bird’s wide wings gliding into the wind and my day begins anew—as a beholder of wonder. My love of herons sparks my sense of awe, openness, and reverence, qualities that I’ve kept private and sacred in watery sanctuaries where herons thrive.

Two years ago, I started a book about my awe-inspiring encounters with blue herons and how these majestic birds had helped me heal from trauma and loss. But recently, gazing through my window at maple trees sparkling in a burst of sunshine after a rain shower, I had an epiphany—a moment of awe in its own right. I realized it was my sense of wonder that had kept me going strong all these years, not just those beautiful herons. It was my willingness to be amazed by the beauty of nature, of music, of real-life heroes, of many wondrous things that gave me the will to survive and move forward.

 And here, precisely, is the thought that struck me: It is our ability to be wowed—not only the thing that wows us—that we can claim as a source of strength.

Neuroscience has shown us that experiences of wonder are essential to our healing and resilience. Only recently did I realize how much my lifelong capacity for wonder had been so vital to my well-being—indeed, to my survival. No one I’d known had ever validated my experiences of awe and wonder as a sign of strength, wisdom, or even maturity. When I finally recognized how essential my ability to be wowed and amazed had been to my recovery as a survivor of trauma and loss, I was eager to encourage fellow survivors to reclaim their sense of wonder.

With this discovery about the power of awe and wonder, I delved further into neuroscience research as well as poetry to explore this mysterious aspect of ourselves that allows us to open to entirely new experiences. As Dacher Keltner, author of Awe: The New Science of Everyday Wonder and How It Can Transform Your Life, describes it, “Awe is the feeling of being in the presence of something vast that transcends your current understanding of the world.”

Exciting bestselling books on awe and wonder have shown how this uplifting topic has given readers a break from the cynicism and pessimism around us, but some stubborn old myths about awe still prevail. Some of these misconceptions can mislead us into high expectations of our moments of awe and wonder that may cause us to miss the smaller, more nuanced surprises.

I would like to share two particular myths alongside two realizations about awe that have opened my eyes and made me more humble—in a good way.

Myth 1

To gain the benefits of awe and wonder, you need to have a big, powerful, profound experience. For example, you once had a powerful moment of awe at age 23 when you saw a spectacular Aurora Borealis in Alaska. But since then, you have never had that same level of awe later (in real life.) You compare your awe experiences and believe “nothing compares” or “it will never happen like that again.”

Reality

Seeking to replicate the same breathtaking awe experience might be causing you to miss out on other moments of awe. Small, brief, and frequent experiences of awe and wonder, over time, offer many benefits to our well-being. We can cultivate opportunities for awe and wonder where we welcome and appreciate the more nuanced moments that still take our breath away.

Neuroscience shows how it is the frequency of awe moments that matter, no matter how small or brief. Studies reveal how smaller daily doses of awe and wonder can provide, over time, the greatest benefits to our well-being. Taking an “awe walk” in the early morning on a regular basis can give us an opportunity to open to awe-inspiring encounters.

Myth 2

You need to be in a calm, clear state of mind to have an experience of awe.

Many of us believe that if we are upset, ruminating, worried, or overthinking, then we will not be able to have a moment of awe and wonder.

Reality

Sudden, unexpected moments often do happen to people who are struggling through grief and trauma. Surprising experiences of awe quickly switch our focus outward and out of the grip of our self-referential thinking. Ethan Kross, a psychologist at the University of Michigan states in a BBC article, “When you are in the presence of something vast and indescribable, you feel smaller, and so does your negative chatter.”

Just imagine -- something astonishing captures your attention while you are ruminating or doomscrolling through social media: Your cat jumps into your room, or a chickadee sings at your window, and you stop whatever you’re fretting about, snapping out of your thoughts. Somehow, a whole day’s worth of worry stops, as if you were “saved by the bell” with a moment of awe. Even in a matter of seconds, you’re suddenly grateful that there is a wide, wondrous world outside of you to behold.

Creating More Awe in Our Lives

Creating the time and space for cultivating awe and wonder can become a spiritual practice, or at least a daily ritual of mindful living. For survivors of trauma and loss, we might turn to awe-inspiring poets, artists, and musicians who shared their moments of awe with the world.

 If there is one survivor of trauma and loss who transformed her life through awe and wonder, I would choose the poet Mary Oliver as my shining example. Her wonder-filled poems have been a lifeline for me and thousands of survivors of trauma and grief. She boldly welcomes awe with a wide, open heart as she marvels at the natural world around her.

Mary Oliver proclaims in her poem, “The Ponds”:

 “Still, what I want in my life is to be willing to be dazzled.”

 I believe we can find strength through awe and wonder by being open and “willing to be dazzled” every day.

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About the Author

Val Walker is a contributing blogger for Psychology Today and the author of 400 Friends and No One to Call, released in 2020 with Central Recovery Press. Her first book, The Art of Comforting (Penguin/Random House, 2010), won the Nautilus Book award and was recommended by the Boston Public Health Commission as a guide for families impacted by the Boston Marathon Bombing. Val received her MS in rehabilitation counseling from Virginia Commonwealth University and is a rehabilitation consultant, speaker, and educator. Her articles and Q&As have appeared in AARP, Caregiver Space, Babyboomer.com, Caregiver Solutions, Time, Good Housekeeping, Coping with Cancer, Boston Globe Magazine, Belief Net, Marie Claire, and Sweety High. Keep up with Val at www.ValWalkerAuthor.com

You can also learn more about the Healing Through Wonder project through their YouTube channel, The Sun Will Rise Foundation, and Support After a Death by Overdose (SADOD) project.

By Michael Robin

This story is a sequel to Robin’s previous story: “Healing my Broken Story: Rising from the Ashes”

I meet with Dr. Sharif on February 14, 2024.  On this day, he tells me that I am in the very early stages of Parkinson’s Disease.  Because I’ve never smoked cigarettes and haven’t had a drink for years, I’m told it’s unlikely that I will experience the worst of Parkinson’s symptoms for at least ten years, if not longer.

The first minute of our conversation grabs my attention.  The moment I hear the word “Parkinson’s,” I immediately think of my beloved PJ.  We met on April 10, 2019, and we have a mutual commitment that whatever the circumstances, one will care for the other until death do us part.  Being loved by PJ means everything to me, and I feel especially grateful for her in the moment of my diagnosis.  I know that I will never be left alone as long as I live.  We are two imperfect people who are perfect for each other.  My sorrows soften knowing that I will not die alone and unloved.  I have no doubt that PJ will do whatever is necessary to ease my burdens, as I will for her.

Two weeks after my diagnosis, I receive a note from Victor Klimoski, a poet and dear friend. Victor writes, “I am sorry to hear about the diagnosis but not surprised at your reaction to it.  Like your encounter with suicide, you look beyond the crisis presented to the light that can be found.  I know that capacity is fueled by your deep inner journey but that it also draws fire from PJ’s love.  Lucky, blessed, you.” 

On Being Disabled

As Victor notes, Parkinson’s is not my first encounter with illness.  On November 27, 2013, I survived my first and only suicide attempt I was 63 years old, unemployed, without savings or resources, in a long-term loveless marriage.  At age 74, I now have Parkinson’s Disease and am officially mentally and physically disabled.  My status is certified by my disabled parking placard.  As I dwell in the bittersweet world of growing older, I reject the idea that having Mild Cognitive Impairment with Parkinson’s Disease, Benign Positional Vertigo (BPV), Post Traumatic Stress Disorder (PTSD), and Attention Deficit Disorder (ADD) makes me any less intelligent, compassionate, or worthy of being taken seriously. 

While getting older, I rely on the accumulated wisdom of experience to guide me on my road home.  Ours is a culture that often devalues the contributions of older people like myself, who have much to offer in terms of care, compassion, mentorship, and friendship.  Living with physical and cognitive disabilities – weakening muscles, lack of stamina, increasing fatigue - does not mean I am no longer productive, dignified, and worthy.  That I am diagnosed with Mild Cognitive Impairment does not mean that I am significantly cognitively impaired, nor does it mean I am imminently dying.

Given my age and all that I’ve been through does not mean that I should expect to function in the exact same ways I’ve always functioned.  It does mean modifying my habitual ways of doing things.  I walk slower and need more sleep.  My memory and focus are not what they used to be.  To maintain my balance, I walk with a cane.  While I am more accepting of the constraints of age, I am more appreciative of what the eminent philosopher, Joseph Campbell called the “rapture of being alive.”

With PJ’s help, I am learning to accept that my mind and body work differently than they once did.  Parkinson’s has shifted the way I see, think, feel, and move.  I have lapses in memory, recall, and attention.  I get headaches and lose focus.  I have an unsteady gait and difficulty with balance and coordination.  And yet, I feel strongly that these “impairments” are not markers of my competence, intelligence, or moral worth.  In some ways, I feel my self-understanding and social awareness has deepened since the onset of Parkinson’s symptoms.

On Writing

For the last ten years, I’ve been writing my spiritual memoir titled, From Despair to Gratitude: Healing My Broken Story.  I have been studying the literature of narrative psychology for many years.  This began early in my career as a clinical social worker. I feel called to write about what it means to live my last years as a disabled person, along with living in the aftermath of a suicide attempt. 

While living with mild cognitive impairment, I am proud to say, I have not yet lost the distinctive quality of my words.  My publisher tells me I have a unique and rare ability to write from a phenomenological, lived experience perspective of what it’s like to live through suicidal despair and chronic illness.  Although I will continue to have problems with dysfluency and syntax, I will never disavow my words.  I may stutter or drop words, but I do so without shame and regret.  I will forever be revising my writing and my story.

I am trying to complete an enigmatic story about how I survived a serious suicide attempt and its aftermath, by giving a soulful account of my life.  Sometimes, I externalize my story by asking, “What is my story trying to tell me?”  The paradox of writing is that the story itself never stands still.  Like a river, it is always on the move, endlessly transforming itself.  A story that stagnates in still waters is a story that loses its vitality.  My story, like my embodied self, needs to be nurtured by a cool mist and flowing waters. 

As a writer, I hope my readers will be attentive to the explicit and implicit questions I raise.  In the beginning, I focused on the external causes of my distress, but as my journey progresses, I become more reflective about my inner life, and how all of my experiences affect my emotional and spiritual well-being.  The desire to know myself, to understand what happened, how to heal, and how to live a life worth living, has been the fuel that drives me to write.

After ten years, I have been able to process a lot of what happened by remembering it, telling stories about it, probing it, and revising what I write.  On this journey, I imagine myself floating on a moving river, never staying in the same place for very long.  As I move through awakenings to new beginnings, I emerge as a person with a renewed sense of self.  Jewish people call this process tzimtzum, the transition from divine emptiness to the womb of becoming.  It’s in these liminal periods that new dimensions of myself emerge.

As I come to the limits of the possible, I appreciate what I have accomplished.  I live with disabilities that have an uncertain course.  I’ve lost the ability to walk fast and my pace is far less steady.  The cane I carry is a ubiquitous symbol of my disability but it does allow me to live a more balanced life.  The deference I’m shown when trying to open a door is heartwarming.  When I walk into a room, I feel a frisson of awareness, that my presence is noted.  Yet, I cannot say that my physical strength and intellectual acumen are not waning.  I can no longer walk without the support of my cane.  In time, I likely will need to transfer to a walker, and maybe later, a wheelchair.  As my bones ache, I tire easily.  It is hard to get through a day without an afternoon nap.

To have Parkinson’s does not mean I have no future. Despite some of these challenges, I want to live at least another decade before I pass from this earth. I am inspired by the example of Michael J. Fox, who has lived a very productive life since first being diagnosed with Parkinson’s more than thirty years ago.  I know that my remaining years will be full of meaning and purpose if I continue to transform memories of loss to memories of meaning.

Loss often involves a release of attachment for how things used to be.  There are only a few people who remain in my life from before my suicide attempt.  Losing my job on June 11, 2013 was the proximate catalyst that transformed my life.  Since then, I have been forever changing myself.  Now, after ten years of writing and reflection, immersed in PJ’s love, Richard’s therapeutic support, and the friendship of writing companions, Victor, Sam, and Kiely, I know who I am.  This is my story, how my attempting, surviving, and writing about a suicide attempt has been a catalyst for spiritual change that has helped me embrace my disabled self.  In the coming months and years, I will continue to share my story.  Above all else, I am grateful to be alive.

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About the Author

Michael Robin is a clinical social worker with more than forty years of experience. This excerpt comes from Robin’s forthcoming memoir From Despair to Gratitude: Healing my Broken Story, to be published by Wise Ink, Minneapolis, in 2025.

Robin would like to acknowledge Kelsey Biddle's and Benjamin Zide's support and encouragement in the development of this story. He was a participant in their research study, “A video-based narrative intervention for adults with early cognitive impairment and their care partners”, sponsored by Brigham and Women's Hospital in Boston.

If any readers would like to offer Robin thoughtful comments, he can be reached at mrrobin@comcast.net.

Photo Credit: Cynthia Magana

When we’re captivated by something greater than ourselves in a shared moment of wonder, we see each other in a whole new light. And later, when we relive these wondrous moments through storytelling—days, months, years later—we rediscover each other in a new light.

I recently listened to a friend’s awe-inspiring encounter of being in the path of totality for the solar eclipse in April this year. She had traveled from Boston to Ohio to reach her perfect viewing spot and fortunately, the weather was ideal for the full spectacle. Weeks later, she shared those powerful moments that had taken her breath away with me and a friend—and our breath was taken away just listening to her story. We got chills right along with her as she held us in suspenseful detail, allowing us to be in that moment of awe with her. We felt something greater than ourselves had unified all three of us in this profound moment of amazement.

Indeed, millions of Americans felt a collective sense of awe during the eclipse: “Oh, wow —I’ve never seen anything like this!” Their awe generated deep emotions, tears of gratitude, chills of excitement, reverence, a sense of oneness with others, an affirmation of life. For such a brief and fleeting event, the eclipse had an enormous impact.

In the same spirit, I’ve enjoyed watching stories of people viewing the Aurora Borealis in May of this year as Americans gazed at these stunning lights for the first time. And on a completely different awe-inspiring topic, it’s heartening to hear the stories from awestruck fans of Taylor Swift about being in a live audience of 60,000 (even though I’m not a Swiftie). And I’ve been captivated by the (comeback) performances of gymnast Simone Biles after her brave advocacy for the mental health challenges of athletes.  And just last night, I’m still wowed by that amazing half-court shot by Boston Celtics player Payton Pritchard at the buzzer.

The awe-inspiring vibes are contagious through stories that relive the moment--from eclipse viewers, Aurora Borealis enthusiasts, ecstatic Swifties, or astonished sports fans.

Quite simply, in these cynical and pessimistic times, I’m awestruck when I see other people awestruck. Even vicariously, enjoying these moments of awe and wonder gives me a boost of faith in humanity. Certainly, humans are wired for collective experiences of awe and wonder, and we seem to be hungry for these experiences.

Neuroscience Validates Sharing Our Experiences of Awe

Neuroscience has shown us how these powerful moments of awe allow us to see ourselves in a whole new light. Awe is considered to be a self-transcending emotion—a state of mind that stretches our awareness beyond our habitual patterns of thinking. Essentially awe grabs our attention away from our self-referential thoughts and pulls us out of our self-absorption. Psychologist and author Dacher Keltner has called our sense of self within this expanded, vast perspective our “small self,” an awareness of being a small part of a much wider world beyond our own lives. This vast, all-inclusive sense of oneness helps us feel humility and compassion for others around us. (Keltner’s bestseller, Awe: The New Science of Everyday Wonder and How It Can Transform Your Life is a friendly introduction to the topic.)

In a BBC article, “Awe: the ‘little earthquake’ that could free your mind,”  University of Michigan psychologist Ethan Kross describes awe as “the wonder we feel when we encounter something powerful that we can’t easily explain.” Awe and wonder leave us speechless and stunned for a moment, a pause—an instant change that resets our thought patterns. Kross adds, “When you are in the presence of something vast and indescribable, you feel smaller, and so does your negative chatter.” Kross has conducted studies with PTSD survivors including military veterans and youth from underserved communities. One study where participants joined in a rafting trip in Utah demonstrated how their feelings of awe predicted better outcomes in their well-being months later. In short, when we experience awe, we turn our attention outwards instead of inwards. We are better able to attune to one another in the moment.

It appears this attuning to one another, shifting our attention outward, also happens when we share our stories of awe and wonder.  Social psychologist Michelle Shiota, a researcher at Arizona State University, describes getting out of our “predictive coding” about what is supposed to happen next when we open to an awe experience, even when we hear the story from the experiencer. Awe allows us to break out of our expectations, assumptions, and biases about what we think is supposed to happen as the experience unfolds. “The mind dials back its ‘predictive coding’ to just look around and gather information.” So, awe literally puts reality right in front of us. Our minds practically gasp when we’re overcome with awe—we “get it” on some level even if we cannot explain it.

So, when we are experiencing moments of awe with others in storytelling, we welcome these powerful, inexplicable experiences that snap us out of our habitual mindsets and expectations. When we share our stories of awe, we are allowing our listeners to “dial back” their own “predictive coding” and just be there with our experience as if we are all feeling it for the first time.

The Healing through Wonder Project

I’ve not only been excited about neuroscience research on awe and wonder but I’ve been inspired to gather storytellers to share their life-changing experiences. I’ve created a YouTube channel called Healing Through Wonder where my co-host, Robyn Houston-Bean, founder of The Sun Will Rise Foundation, and I interview guests who tell their stories of healing from transformative encounters with awe and wonder. We invite guests who are facing grief after the loss of a loved one due to substance use, as well as guests who’ve survived trauma and addiction, to share their awe-inspiring experiences. Many of our guests have attributed these transformative moments of awe to being a turning point in their healing—their lives have never been the same since that shift in their awareness.

Robyn Houston-Bean, co-host, Founder of the Sun Will Rise Foundation (top left). Val Walker, co-host (top right). Tavyn Thuringer, Special Projects Assistant at SADOD (Support After a Death from Overdose), bottom left. Mary Peckham, peer grief support facilitator at Matthew’s Candle, bottom right.

With our Healing Through Wonder channel, Robyn and I have created a friendly platform to claim and celebrate our healing encounters with awe, such as breathtaking moments with wildlife, with dreams, music, spiritual revelations, and more. We believe everyone has a “wonder story” and we’ve witnessed how sharing our story inspires listeners to explore and welcome future experiences of wonder. Indeed, healing moments of awe and wonder are contagiously uplifting as well as meaningful. We get goosebumps and feel a sense of oneness and closeness with each other when we share a moment that took our breath away. 

If any readers of the Health Story Collaborative are interested in being a storytelling guest on our Healing Through Wonder channel, please feel free to contact Val Walker through her website.

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About the Author

Val Walker is a contributing blogger for Psychology Today and the author of 400 Friends and No One to Call, released in 2020 with Central Recovery Press. Her first book, The Art of Comforting (Penguin/Random House, 2010), won the Nautilus Book award and was recommended by the Boston Public Health Commission as a guide for families impacted by the Boston Marathon Bombing. Val received her MS in rehabilitation counseling from Virginia Commonwealth University and is a rehabilitation consultant, speaker, and educator. Her articles and Q&As have appeared in AARP, Caregiver Space, Babyboomer.com, Caregiver Solutions, Time, Good Housekeeping, Coping with Cancer, Boston Globe Magazine, Belief Net, Marie Claire, and Sweety High. Keep up with Val at www.ValWalkerAuthor.com

You can also learn more about the Healing Through Wonder project through their YouTube channel, The Sun Will Rise Foundation, and Support After a Death by Overdose (SADOD) project.

On April 13th, 2024 Health Story Collaborative had the honor of facilitating a Healing Story Session at SCIboston's annual fundraising gala, with two amazing members of their community, Dianne Viktus and Matthew Klos.  Listen to their stories as they share the trauma, pain and challenges they have faced on their journey with a spinal cord injury, and also the hope and healing that carries them forward.

By Dianne

You are allowing me to share my voice in your head - that is a sacred responsibility. There is intimacy in living in someone else’s mind and sharing that moment and I want to acknowledge that. I also want to acknowledge that there are many different pieces to my story, and this is just one small part of that.

As someone who suffers from grief, loss, trauma, anxiety and depression, I find a lot of meaning in sharing my story. Just by receiving it, you are giving me meaning.

~ 

When I was about seven years old, I remember jumping in the back of my parents 1992 Plymouth voyager - you know, those ones with the wooden paneling on the side. I was eager and excited that it was finally my turn again to make the three-hour road trip to my grandparents’ house for the weekend. My grandparents were so important to me and my two older sisters. We cycled through visiting them.

My papa taught me how to fish in the pond behind their house. I always insisted he throw back the pregnant fish. He insisted he did, as if he could really tell (eye roll).

My grandma used to tell me I was going to be a doctor. Since I was seven years old, she was grooming me. We would play doctor together with her old stethoscope from her nursing days and her old leg cast from when she broke her femur - me and grandma ended up having that in common, as I broke my femur a year ago. 

She never stopped telling me how great of a provider I would be one day. Years later, they moved down the street from us so I got to stop by whenever I would pass their house on my runs around the block or on my drive home from high school. When saying goodbye, her five foot two inch, frail but mighty warm body would squeeze me as tight as it could around my boney hips and call me doctor. I'd roll my eyes, look down and smile, “you know grandma, I don't know if that's what I’m meant to be,” I'd say, before telling her I loved her and giving her a big kiss. 

My grandma died when I was a freshman at Brown. It was spring, we were in the middle of my lacrosse season. Balancing school and lacrosse was hard. I was still deciding on what major I was going to declare so I filled my course load with chemistry, calculus and neuroscience that year just in case I needed to go pre-med.  Grandma was always on my mind.

Fast forward five years. I had graduated from Brown and attended graduate school to become a Physician’s Assistant. I think Grandma would have been proud.  I was working as a surgical PA and living 25 minutes from my parents - never did I ever want to live that close to my parents but it low key was the best.

And the work. It was exciting and meaningful. I didn't mind being – as my colleagues would say – “verbally assaulted by our arrogant attending surgeons in the OR and overworked for being new by working all the weekend and overnight shifts despite what our contract said.” It was worth it to me. Call me crazy. I loved the thrill of the unknown emergencies that would arise, and the calmness those shifts required of me. And I loved operating. Plus, it provided me with a comfortable lifestyle, living within my means, saving for retirement, dating, living with my best friend from high school, dreaming about the future while loving and appreciating the present moment. I was no longer stressed with schoolwork 24/7. And I got to see my family almost every weekend. I made it, I thought. I was in my late 20s and living the life of my dreams.

A typical day for me?

My alarm goes off for 4:45am, I snooze it. 4:47am, snooze, 4:50…crap! I shoot up from bed, my workout class starts at 5:00. quickly I throw on the workout clothes I’d laid out the night before. Sneakers on, water bottle full, sweat towel and keys in hand and I’m off. I sprint down to my car. I pull a U-turn and I speed down the road one mile to my gym. I'm 2 minutes late. Trust me, nothing has changed there, except now it is maybe 20, 30 minutes late everywhere I go. They already started the warm-up run. I throw my belongings down and jet to catch up with everyone as they jog around the building in the crisp morning air. I'm half asleep but I don't want to be anywhere else. The intensity of this gym sets the tone for my day. Lights are out, music is blasting, and 25 athletes are pushing their bodies to the limit. There are free weights, cardio, yelling, teamwork - everything that gets my blood pumping and endorphins released. 

Just like that and it's over, all too fast. 

I'm back in my apartment. I hop in the shower. I only have 20 minutes before I need to be at work. I'm rushing to the max. But I live for this. I make it to work, change into my scrubs and sneakers and I'm at the table for change of shift and sign out - where my overnight colleagues give us report on what happened during their shifts and updates on all current patients on our census.

 It was March of 2020. It had been four years since I did a semester abroad in Greece and traveled all throughout Europe. It was time to travel internationally again. So, me and a couple of friends packed up and we were going to Brazil. We made it as far as Florida when the world shut down. When we began having to realistically consider if we would be stuck in Brazil if we went, we knew we weren’t going. 

Back in Syracuse, New York, I returned to work, - there is no work-from-home for hospital workers, so, back to my typical days…

On my days off, I’d sleep in and spend the afternoons hiking, going on long runs, roller blading, boating on the lake and watching sunsets. May I remind you though, it's July 2020. Everything was shut down. There wasn’t really anything else to do but to enjoy nature and appreciate what was right in front of me. I had to lean into that side of me, I needed an outlet - I was still healing from a breakup - which was really the least of my worries. I wasn’t able to hug or kiss my dying uncle or my newborn nephew due to the steady surge of covid-19 cases. Watching the sunsets helped. There’s really something about sunsets isn't there? Might it be that sunsets are a reminder that no matter what happened in your day, it can end beautifully?And then, just like that, an opportunity to reset. 

The sunset on Sunday, July 19, 2020, did, just like that, end beautifully. But the reset took a bit longer.

I had been working a four-day stretch of 12-hour shifts. After work I took a long shower, longer than usual actually, and I’m so glad I enjoyed it because little did I know that it would be the last time I would ever be able to shower myself. 

I sunk into the couch, pajamas on and hair still wet, as I looked out the window and saw the beautiful sunset. I couldn’t help but want to get a better view and enjoy the warm summer heat. I grabbed a blanket and climbed the ladder up to the roof like I had done plenty of times before. I lay up there watching the sun escape beneath the horizon, and then, as it darkened, admiring the stars take over the sky. The quiet peacefulness of the dark night cleared my mind. I remember reflecting on how free I felt - as if the world were at my fingertips. I felt so alive and powerful, recalling how I had been able to contribute to saving someone's life earlier that night. I have the best job in the world, I thought. I truly found my calling. This is what I’m meant to be doing. 

When it was time to descend the 12-foot ladder in the darkness, I lost my footing and slipped. As I was falling, I specifically remember expecting to land on my two feet. I'm an athlete after all. 

Instead, all of a sudden, I was on my back on the hard cement ground at the base of the ladder looking up at the same starry sky that had just provided me with such peace. I felt immediate pain in my right shoulder and thought, “that’s gonna hurt like a bitch in the morning.” Nothing else hurt though and I quickly learned why. 

I went to flex my abs and put my arm out to crunch my upper body forward, but nothing happened. I brought my chin to my chest and saw my legs were not where my mind thought they were. My knees were bent, and my legs were crumbled next to me. I went to move them, and again, nothing happened.

 In that moment, I knew that I was paralyzed. 

And then an eerie silence took over....the calm before the storm if you will.

I fell on top of my phone, so Siri wasn’t registering to call 911. I didn't know how long I had to prepare myself for the chaos and uncertainty that was to come before someone found me and took me to the hospital.

I didn't know how long I had to reminisce about my 27 years of life. To think about how relatively privileged my life had been up until this point. Did I take advantage of it? Am I getting punished? Would I have done anything differently? I had just settled into my job after years of schooling. Was it all for nothing? Will I ever operate again? I was so embarrassed and in disbelief with what just happened. Can I rewind? To my surprise, even with all these racing thoughts, I remained relatively calm. I knew I could do more damage if I panicked. All I could do was take a deep breath and wait for everything to change. 

As I was about to enter the OR to go into surgery to decompress my spinal cord and repair my broken neck, I finally broke down crying for the first time. I was on the phone with my parents, terrified of what the outcome would be - my surgical knowledge knew there were huge risks. When I woke up from surgery and saw my mom sitting next to me, all I could do was smile because I was so happy to be awake and alive. But then, seeing my mom’s horrified face, reality hit. I felt so bad for causing my family pain. I knew they were so scared, and I apologized endlessly as each one visited me, one at a time - covid rules. I blamed myself for what had happened – four years later and I'm still working on forgiving myself.

As the days passed and complications arose, I became so angry. Why aren’t my nerves waking up? Why can’t I wiggle my toes? Why can’t I move my fingers? Just give me my goddamn fingers… anger turned into fury. 

Unable to move the majority of my body while lying awake but with a breathing tube down my throat, I had panic attacks almost every night. 

The tube eventually came out but because my diaphragm was affected by my injured spinal cord, I had to relearn how to breathe entirely. This was complicated by a punctured lung, pneumonia, and a mucous plug. I was so frustrated that I wasn’t progressing. Twelve days after my fall, it was my birthday, and I was begging my attending for a tracheotomy as I felt like I was drowning in my own saliva. 

The outpouring of community support I received through cards, flowers and gifts kept me from entering a depression in the hospital. There was this one card that I had taped to my wall, across from my bed and right under the tv - I am brave, I am strong, I am loved. I would recite that to myself dozens of times per day. I am brave, I am strong, I am loved. I had so much gratitude in my heart and was hopeful that if I put in the work, I would make a full recovery - because that's what life had taught me up until this point.  I was never the smartest or most athletic, but I knew how to work hard. 

This eager and hardworking spirit, though, led me to try to move my new body before I was ready. I was alone in my room most of the time - visitors were still very much restricted - but I had no time to waste. PT and OT sessions were so short, I felt like it was up to me to practice swinging my legs to the side of the bed. How was I ever going to walk in six months if I can't even do that yet, I thought. Well, this resulted in many falls off the bed which of course left me feeling disappointed as I lay stuck and helpless on the ground. Once, I couldn't reach the call bell, so I just had to wait until my nurse came into the room and frantically called a rapid response. I quickly had about ten sets of eyes looking down at me. I felt like a heavy piece of furniture that they had to brainstorm how to lift. I later earned myself a new piece of hospital jewelry and this one said “fall risk.” I feel like they should have known considering how I got to the hospital in the first place. 

When I left the hospital and entered the next stage of my recovery, rehab at Boston’s Spaulding Rehabilitation center, I became overwhelmed as I learned just how many changes I would have to make in my everyday life once I got back into the world. “Recovery” was so much more than just going to physical therapy. Bowel and bladder management, chronic pain, low blood pressure, medications, pressure sores, UTIs, short-term disability, long-term disability, SSI vs SSDI, wheelchair fittings, adaptive tools, and equipment. I felt so alone, constantly trying to explain to people what I needed when I didn’t even know myself. Realizing that I would likely be in a chair the rest of my life made me question if I wanted to live this life at all. That was terrifying.

 I've always been an optimistic person, so these kinds of thoughts were so foreign to me. the American philosopher Cornel West says that “there's a fine line between optimism and hope. Optimism is a naive mindset,” he says, and “hope is real.” 

With time, I got the daily help and equipment I needed, and I settled down into a routine. My personal care needs and daily tasks became a little easier. I eventually accepted that I would never get my old life back, and I discovered that I don’t have to walk to be happy - don’t get it twisted, I WANT TO WALK and my will to walk will never cease, but acceptance helped me develop a sense of real hope for the future. Not optimism, hope. Hope for a cure. Hope that if I keep my body strong and healthy, once there is a cure, I will be ready. Hope, in the meantime, for happiness and independence. 

BUT, even with all that awesome progress and hope, grief persisted. Why? Because grief never really goes away. 

Grieving is physically exhausting. For me, I'm constantly feeling sleep deprived but then feeling guilty for sleeping too much because then I feel lazy and unproductive. So, then I go on autopilot, but on autopilot you can only go as fast as the speed limit and in this body the speed limit is negative two mph. 

This injury, on the surface, is a physical injury, and because of this, rehabbing the physical body is the priority. But grief is powerful and is not just in the mind. If we do not tend to our grief it will reemerge in our body and limit our recovery. We’ll stay frozen and dissociate. Then, it will show up in our lives as depression, stagnancy, disconnection from our emotions and relationships.

I’m a big believer in the phrase, “you can’t heal the pain you refuse to feel.” 

Feel the pain. Feel the grief and all the emotions that come with it.

You will emerge. When the worst possible thing you can imagine happens, you have to celebrate that you made it through, that you survived. It’s wrong to say you find a silver lining, but you manage to continue on. Day after day. One foot in front of the other, figuratively speaking of course - maybe I should say one rotation after another.  You make it your life’s work to survive this thing. I wouldn’t say it gets easier with time. Time definitely does not shrink grief. Your grief will stay the same, but your world will grow around it. 

I still struggle with my trauma and my grief from losing the life I built. 

Just last month I was on the couch in my apartment. It's Sunday and I'm forcing myself to relax and do nothing - which often makes me feel guilty “I don't deserve to relax or have fun anymore,” my brain usually tells me. And this time it feels like I'm being punished for it. My insulin pump is malfunctioning. I was diagnosed with type 1 diabetes, before my injury, when I was 18 years old. Technology has come such a long way and if it weren't for technology, I doubt I would be living on my own. But technology fails us sometimes. And on those days, I fear for my life. The thing with malfunctioning insulin pumps, once you troubleshoot the problem, it usually takes a few hours to truly know if it is resolved or not. Well, a couple of cycles of that and I've spent all day troubleshooting. This means my blood sugar has been hanging out at 400 or above for more than 12 hours. My body begins to feel weak, my brain foggy and I'm dying of thirst - but I've already finished the two water bottles I've brought to the couch. It begins to get dark, and this is when I start panicking. I'm brought back to the feelings of being stuck on the ground and the embarrassment that I need help. But I can't get in touch with anyone and that only makes the panic worse. If only I could get up and walk to turn on the lights, walk to get more water, and most importantly walk to get more insulin. If only my fingers worked properly maybe my troubleshooting efforts wouldn't have failed. Now I'm hyperventilating and I have flashbacks of the panic attacks I had in the hospital. It's a complete ambush. Instead of trying to suppress it though, I let it out. I'm balling until someone is by my side. I need a hug.  

You see, grief never goes away. But my world around me has truly flourished. Every day brings new stressors and challenges, and every challenge is an opportunity to learn and to grow. To make myself a better person. Not every challenge is a grief ambush, thank heavens. 

When you first get injured, they tell you your recovery will be between six months and two years. I laugh at that now. I dedicated two full years to just recovery. My sole focus was to get as much functional return as possible while pushing the limits of independence. I was going to therapy every day. I was trying every adaptive sport and treating it as a cross training opportunity. I was talking to as many experts in the field and as many people living with spinal cord injuries as possible. I was listening to as many SCI podcasts as I could. I was researching and involved in countless research studies. And I was having surgery after surgery so I could at least use my hands to my advantage. I didn’t stop doing any of that after two years, but my priorities shifted. I wanted to get back to work. I wanted to provide for myself, contribute to society and have a purpose again.

I’ve been open about my mental health from the very beginning which really helped me understand that I have perspective and empathy and patience that I never had before. My career as a surgical PA was dedicated to fixing the physical body but now more than ever, I know there’s power in healing the mind. Which led me to accept a position as a psychiatric PA. 

That has also brought its own challenges but I'm learning that this injury is a constant eb and flow of adapting. 

I still sometimes can't help but look at others my age and think how easy their life is compared to mine, how good and normal they have it. But then I look at mine and hell, some days I get more accomplished in one day now than I did before my injury.

Next week I'm being flown out to DC and then LA for a new job I took in the adaptive sports industry. You see, the disabled community is never a community you aspire to be in, but once you are in it, you realize how badass your peers are and you want to be involved with them as much as you can. I do. They are a community that lift me up like no other. I feel seen and heard. I never feel like a burden. So, when Heidi and Jess asked Stefan and I to start a support group for people our age, it was an easy yes. 

I miss my old life so much. I miss my relationship with my old friends, my relationship with my family. I miss being a naive optimist. But I think some of that comes with the territory of growing up. I was going to miss those things whether I got hurt or not. 

On May 28, students from the Harvard Medical School advanced elective, "Harnessing the Healing Power of Stories: Narrative Theory and Narrative Practice," taught by Dr. Annie Brewster and Dr. Jonathan Adler, hosted an evening of transformative story sharing.  Watch a recording of this event to hear about the lived experiences of three individuals navigating health, wellness and life. Their stories transcend illness as a celebration of hope, human resiliency, and dignity.

By James Kraus

I’ve been blessed with excellent, energetic health. As a kid, my parents named me “the explosion on legs.” Although lacking competitive tenacity, I participated in many sports and outdoorsy activities. Most recently, working out regularly, yoga, dance classes, and most enduring of all, bicycling. 

I rarely get colds, don’t think I’ve had the flu or Covid. Friends and medical professionals were surprised I’ve never been on medications or hospitalized. I still have my tonsils. I don’t have any allergies. I brag I’ve never thrown up.

At sixty-two, my work was physical: handy man/construction work, large gallery deinstallation/installation, moving/transporting fine art and furniture. I’d often bicycle nearly an hour to jobs with a 30-40lb backpack of tools. Mid-March 2023, I passed a full physical with flying colors. March-April, 2023, I worked 8-12 hours seven-days a week. After which, I was beat. I relaxed and slept like crazy, but never recovered. 

Friday, May 5, 2023, while riding my bike to Boston College for my weekly radio show, I couldn’t catch my breath on slight inclines and coasting downhill. Near BC, I confronted the Beacon Street hill paralleling the Boston Marathon landmark, Heartbreak Hill. I couldn’t go on. I managed to walk my bike up the hill and star the show just in time. My voice was faint, raspy. I told listeners about my adventure. Folks posted their concerns. I aired appreciation and terror. 

During the show, I scheduled a doctor’s appointment that afternoon. Pedaling to his office, my breathing was worse. A nurse said my vitals were perfect. A young nurse practitioner ordered an EKG - also perfect.

I said I feared cancer. This situation was like nothing I’d experienced. Cancer I knew. Both my parents succumbed to the disease. The NP listed a slew of other possibilities:  heart, lungs, thyroid, but ended saying, “When we get older, our organs don’t function like they used to. This could just be a case of getting old.”

I fired off bewildered indignation. How could I go from extreme physical activity and two-weeks later this may be my life. He replied, “It very well could be.”

Monday morning, a nurse called. Severe anemia.

Over the next ten-days, my condition worsened. My third floor apartment was near impossible to reach without breaks. I slept far too much. I became spindly, shaky. White-outs were common. A morning call to my doctor brought orders, “Get a ride to an ER, soon.” At Beth Israel by noon, I was admitted immediately. 

Stuck, poked, hooked to sensors and an IV drip, the doctor probed a gloved finger and held it to my face - a dark residue indicated digested blood in my stool. I said it’s cancer. She said she suspected internal bleeding from an ulceration or esophageal tear. Easily fixed. At my age, a common diagnosis. Again, the age thing!

Around midnight, I was transported to the GI unit. Being a life-long loner, a truly single man, the beeping equipment, bright lights, smells, yelling, my roomie’s 24/7 blaring TV, constant required interruptions and tests were overwhelming. 

Sustained only on that delightful, salty, citrus colon evacuating beverage I needed to drink every 15 minutes. I got no sleep. 

In the morning, I met the wonderful Dr. “Bird” who introduced himself with an adorable lie,

“I’m looking for Mr. Kraus?”

“That’s me, doc.”

“You sure? I’m looking for a 62 year old anemic man. I’d say you look 45 and in good health.”

 “That’s so not true but I’ll take it.”

 Dr. “Bird” echoed the ER diagnosis; a bleeding ulcer or tear.  Again, I said I suspected cancer. He, like my nurses, implored me not to get ahead of myself. “You’re in excellent health and spirit. It’s likely minor. You’ll be home in a few days.”

Two-and-a-half days passed. My bowels never ran clear. Likely a GI tract lined with dried blood. Regardless, a colonoscopy and endoscopy were performed. 

Later that day, Dr. Bird returned. 

“Ya’ look a little dower doc. What’s up?”

“You were right. You have cancer.”

“No? Really?”

“The endoscopy found an extremely large, oozing, bleeding esophageal mass.”

Instantly, time ground to a crawl. Although in a fog, every sense and detail felt ultra-vivid.  I couldn’t fix on any point. Cross-legged on my bed, I rubbed my thighs, rocked back and forth, blurting out a barrage of a lifetime’s questionable, suspect, indulgent behaviors. Dr. “Bird” tenderly suggested avoiding such questions. “No one knows how or why you got cancer.” A CT scan would answer what extent and stage.

Dr. “Bird” left me with sage words, “I know it’s shocking but excellent health masked your illness and excellent health will help you fight this. Also, James, it’s now your time. This is the time for absolute honesty. Stay positive. It’s as powerful as medicine.”

Once alone, I cried intensely fueled by fear, guilt, shame and regret. Projections of my parent’s treatments and (perhaps my own) ugly demises played in my mind. I lamented and rued what was, what may have been and what may never be again.

I halted my three-hour pity party choosing to earnestly meditate. I hadn’t done it in days. Deep breaths summoned the universe’s guidance. The answer. What about those twelve steps that brought nearly 10.5 years of sobriety? Could they help navigate this new disease that indisputably wants me dead? 

Step 1: I have cancer. That won’t change. I must manage this new life, treatments, appointments, emotions, who I tell, their reactions. Although powerless over cancer, I had true power in my choices for coping and care.

Step 2: I must trust in life’s generous forces, a power beyond me, to let go of self-will, keep sane, serene, and believe I’m cared for.

Step 3: I turned my will and life over to g_d’s care. I vowed not to play Google doctor. Trust the process. Like “Southie” AA old-timers say, “Yuh right whaya’ otta’ to be, kid.”

Step 4: I must release and resolve resentments against cancer, doctors, the medical field that missed this, fate and, hardest of all, myself for allowing this to happen. Chastising myself or other’s faults helps no one. Grab a feather not a bat.

Step 11: Through prayer and meditation,  improve our conscious contact with God.

I recalled in 1981 my father gave me a book while grappling with late-stage Leukemia. Rabbi Harold Kushner’s When Bad Things Happen to Good People.

In 1939, my young father and grandfather fled Nazi occupied Prague. All family that stayed perished. A highly respected genius engineer but a troubled and depressed atheist, my father was regularly lauded as a good honest man. Why did g_d give him cancer while evil people thrive? For that matter, why me?

I found a YouTube video of Kushner speaking in 1984. He said g_d doesn’t play games or push buttons, selecting who’s stricken by illness. G_d does’t test people or give them “only what they can handle.” Nature’s laws don’t recognize good or bad. A rock fell from a mountain and hit me. It doesn’t wait to fall and strike the deserving. This is “unquestionable biology.” NOT g_d’s plan or punishment.

Kushner assured g_d isn’t a genie, slot machine or ATM granting wishes, dispensing jackpot miracles. He declared, “Don’t pray for miracles. They won’t come. But pray for strength and faith and watch miracles happen.”

Step 12: It’s said in AA, application of the first eleven steps brings a spiritual awakening. After walking my diagnosis through the steps, I believe I had another spiritual awakening. I had tools, coping skills. Even a committed loner like me isn’t in this alone. I vowed to strive for positivity. Ask for help. Express sincere interest in those along side me. Hear their stories. If asked, share my story. Stay upbeat. Laugh often. Continue being humorous, trusting, pray, meditate - believe.

I had a plan: Don’t default into self-pity or obsesses over myself and situation. Accept the staggering vulnerability, my neediness and the challenge of admitting my condition to others. My fear of being seen as a vicim, sick and dying.

For two days, I felt upbeat, buoyant.  Dr. “Bird” arrived with my CT scan results. I anticipated good news. 

I couldn’t have been more wrong. Stage IV esophageal cancer. Highly metastatic in my liver, affecting several lymph nodes and innumerable tiny nodules on my lungs. I was gone. Unmoored. A million miles from shore. Lost at sea.

Tears rained down. I asked Dr. “Bird” to see the scan, situated backward on a chair - shins on the seat, arms propped on the back, rocking in a weird genuflection. I peered at the computer monitor. We took a frightening, ugly voyage through my gut.

For two days, leading to my release, nothing distracted me from looming death as palpable, pervasive and deeply rooted as my cancer.

A friend drove me home, and stayed while I ate yummy fish tacos. It eased my re-entry disorientation. Once alone, my home of nearly 40 year was bittersweet relief, familiar yet alien. I weirdly missed the hospital and nurses - my doting angels. 

Days later, I answered an indelible call from a devoutly spiritual friend, Stella. I shared my diagnosis. To my surprise she revealed her husband had bladder cancer and was responding well to two-years of treatment. “James! You in the light and spirit. I’m gonna pray hard but I don’t think the universe is done with you. Uh, uh. You’ve gotta lot more to give to this world.”

June 8th, my home drive friend overcame unease, we met my oncologist, Dr. B. We totally clicked. A practicing, spiritual Jew, our belief in prayer, faith, and humor synced. I adored our witty meandering banter that seamlessly switched to professional communication about the “mass” (“It’s gross, right? I don’t like it.”), relating details (“It’s incurable. Remission is miracle status. But, I’ve seen miracles happen.”), the chemo and immunotherapy potions and unfathomable regimen. (Every two-weeks. Two hour in-clinic immunotherapy, then forty-six hour home chemotherapy infusions - until July.)

I requested my prognosis, “I’m not sure I want to say. I could have five doctors here, with different opinions.” My mother exceeded her three month prognosis by fifteen years so I pressed for the number. “Three years. The last year will be hell.” She urged, recoveries are unique as fingerprints, a positive mindset and gathering prayers are good as medicine. “When you’re back on the bike, you send me a picture.” The encouragement and support from her, my friends, the steps, my plan, I felt ready for treatment

But, June 15th, I woke with awful calf pain. I was shaky. Scrambling eggs was exhausting. I was a back at the ER. This time for 2.5 days. CT scans and ultrasounds exposed extensive leg and pulmonary thromboses - just like dear old mom.

On Riesman’s oncology wing, I “vacationed” for five weeks. Doctors talked about removing half my liver, part of my stomach and the mass I insisted be called “Bleedy”, to their dismay. But I was too unstable. Bleedy kept bleeding. There were so many conversations about tests, transfusions, and prognostications. I was sick of talking about me. The boredom!

I greeted other patients, and, if willing, roommates and I shared our journeys. Often harrowing, prophetic tales. I often circumambulated the oncology wing, spying glimpses of a potential dark future. Families gathered in final moments. I implored nurses to sit, tell stories about their lives, dreams, show recommendations, new puppies, loves, a new engagement ring. I heard nurses jockeyed for me to be their patient -“ the happiest cancer patient ever.” When asked how I could be so positive, I replied, “The 12 steps of AA! Everyone should do them.”

Despite trying to stay positive and make connection, I didn’t comprehend I was in danger.

Due to a Covid outbreak, I was moved into the solarium. I reveled in the quiet, two walls of windows, an expansive view of transport helicopters. legendary soaring hawks and sunsets.

Two weeks later, I fainted returning from the hallway bathroom. I was incontinent on waking up. I hid my face under a pillow and alerted my nurse about fainting. As she pulled back the sheets for cleanup, she gasped. I’d released mainly blood. A rush of staff attended to me. I was clinically unstable, near dead. I recently reviewed my medical records to discover I was on death watch that entire hospitalization.

Five more transfusions later, I was told radiation would begin. Immuno and chemotherapy treatments started immediately after my fifth and final radiation round. I was knackered and moaned to nurse Francie, “I’m so lazy. All I can do is lay here and sleep.”

She implanted my rally cry, “Ya not lazy! Ya fightin’ can-suh.”  

Slowly, ”Bleedy” stopped. I started to feel “good” and was released. Visiting nurses checked my condition and disconnected me from chemo. Friends helped me shop and treated me to meals. My radio show listeners reacted with moral and/or financial support. 

The anemia lessened. My stairs weren’t such a problem. Three weeks later I was carrying my bike outside and upstairs, riding to and from treatments while still on the chemo drip. I’d shock friends and neighbors, “Wanna know a secret?” I’d reveal my fanny pack and protruding IV tube. “I’m gettin’ chemo right now!” 

Mid-April 2024, chemotherapy stopped. I still get immunotherapy, but only every three weeks, likely for life. Dr. B beams I’m doing amazingly well. “As close to a miracle with out being one.”

 I am blessed. Maybe lucky. Nine-months of treatment, have been hard but not as bad as I feared. I still haven’t thrown up, only negligible hair loss, and have experienced only a few debilitating side-effects my compatriots deal with.

If in the wilderness, have a guide. I actively sought support groups which lead to “BD” of Boston Medical Center. I’m in his Men’s and GI cancer groups. We do qigong/tai chi, meditation, spiritual healing, writing, crafts, museum tours, and holiday parties. They are understanding, sharing sherpas.

In meditation, I was at war with cancer - an enemy invader, I wanted gone. That shifted after reading Gabor Maté’s view of illness “markers” and the bodies alarm. “BD” recommended cancer “thriver” Denis DeSimone. Now, I see cancer is part of me. Hating cancer is hating a part of me. If I can love cancer, I’ve come all the way, teaching me valuable lessons. Most days, my buddy and me get along. 

Another blessing, my new PCP. He’s older than me with a zillion credentials. After a full physical and records review, he said, “First off, you’re in excellent health and have a great attitude.”

“Despite…”

“Yes, despite. You’re not old. Medically, eighty is old. Although we know things can change quickly, I see you have many good years ahead of you.” I declared, it’s not a death sentence, it’s a life sentence. 

Meeting with Dr. B recently, I attributed my near miraculous recovery to her and the hemo/onclogy staff. She said, like always, “No! It’s all you. You’re so amazing - just incredible.

 I paused, “Ya know, It’s beyond just us. There are so many spokes supporting the wheels of my recovery.”

During a four-day Thanksgiving hospital stay due to treatment related colitis, Reisman 11 nurses came by,  they hated my return but loved seeing me. I told my main nurse, “It’s been a dark ride. But I see a lot of beauty. Cancer is sad and beautiful.”

---

About the Author

A decades long freelance illustrator and a 35-year radio host at Boston college's WZBC 90.3 FM,  James received a diagnosis of Stage IV metastatic esophageal cancer on Memorial Day weekend 2023. He faces his condition with humor, grace, courage, spirituality and a heck of a lot of humor and storytelling, to remarkable results. Want to hear the radio show (hold your ears!)?:  www.mixcloud.com/kotjames

Asking for help is difficult, but it’s the key to a better life.

By Chris Anselmo

Author’s Note: Please share this piece with anyone who might benefit from reading it. If there’s anything I’ve learned, it’s that we all struggle to ask for help.

---

The paramedic relayed my condition to the medical team waiting inside the ER lobby.

“This is Chris Anselmo. 27 years old. Has a disease called limb-girdle muscular dystrophy. His symptoms are chest pain and shortness of breath. He thinks he might be having a heart attack.”

I drew in air through my oxygen mask, but the crushing pressure on my chest kept my lungs from fully expanding. 

Doctors and nurses wheeled me into an empty room off the main corridor. A flurry of blue arms sprung into action. One nurse removed my sweat-soaked t-shirt. Another placed EKG electrodes on my bare chest. A third drew blood from my right arm.

“We’ll be right back,” said one of the nurses in a thick Boston accent. “Press the button if you need us. We’ll know the results soon. You’re gonna be okay, hon.” 

I didn’t believe her, but then again, I had never been rushed to the hospital in the middle of the night before.

I tried another deep breath. Another struggle.

Alone in my thoughts, all I could do now was wait. I closed my eyes and replayed the past hour in excruciating detail:

• Waking up at 3 am gasping for air, drenched in sweat even though my air conditioner was running at full blast.

• Dialing 911 and talking to the dispatcher, my hands shaking violently as I gripped the phone.

• Digging dirty clothes out of the hamper, a wardrobe born of convenience and desperation.

• Knocking over my forearm crutches in a futile attempt to grab both handles with one hand. 

• Riding in the ambulance through the pitch-black streets of Cambridge, Massachusetts wondering if this was the end, and if so, who would call my parents.

A knock on the door broke me out of my trance. The ER doctor — a short middle-aged man in a white lab coat — walked in, followed by the nurse with the Boston accent. The doctor held a clipboard with a printout of my results.

“Good news. You didn’t have a heart attack. This was definitely a panic attack.” 

Thank God. The pressure on my chest lifted, and for the first time in an hour, I drew in a deep breath. Sweet, crisp air filled every inch of my lungs.

“I’m so glad it’s not….wait, a panic attack?” I sat up. “But I’ve had those before. This felt much more intense. Much worse.”

The doctor looked up from his clipboard. “Panic attacks can vary. Some are severe enough, like tonight, to land you in the ER. Have you been stressed more than usual recently?”

“Yes.”

“Any particular reason?”

I hesitated. In the past, when someone asked about my emotional state, I always answered in two words: “I’m fine.” 

But this time, that wouldn’t be enough. He needed more. 

“It’s…” My voice trailed off. I knew what I was feeling, but didn’t know how to put it into words. Damn, why was this so hard? Exasperated, I pointed to the crutches leaning on the chair next to my bed. 

The doctor nodded. “Understandable. But a panic attack this bad is usually the result of accumulated stress and anxiety over a long period. Do you talk to anyone about your struggles?”

“Not really.”

“Okay, well we’re going to have to change that. Talk to a therapist, or a close family member or friend, or a trusted mentor. You need to get help, because this can happen again.”

I leaned my head back against the pillow. Although I was glad I wasn’t about to die, I felt humiliated.

How did I let it get to this point? Why couldn’t I let people know I was having a hard time?

---

The doctor was right. My ER trip was a long time coming, the result of years of saying “I’m fine,” when in reality, I was anything but fine.

Growing up, when I experienced stress or sadness, my default was to hide it from the world. When my parents asked how I was doing, rather than say I was overwhelmed by classwork, or that I didn’t have a lot of friends, I shrugged.

“I’m fine.” 

To this day, I’m not sure when or how this response became my answer to emotional inquiries. My parents and older sister, Jen, always showered me with love, so it wasn’t a matter of fearing rejection. Perhaps it was simply due to my introverted nature, or being a teenager who didn’t yet understand the full spectrum of emotions inherent to the human condition.

Instead of confronting my negative emotions head-on, it was easier to ignore them or change the topic.

And, for a long time, this approach worked. 

From childhood through college, I was able to bottle up my struggles without long-term repercussions. Sure, I’d have periodic bouts of depression or weeks when I was stressed out by a looming exam, but I always navigated through rough patches without needing to talk to anyone. I just figured this is how life works.

But self-sufficiency only lasted so long.

When I first noticed muscle weakness six weeks after graduating college in 2008 — the onset of a rare disease called limb-girdle muscular dystrophy type 2B — I did what I had always done whenever I encountered adversity: I told no one.

Eventually, I had to let my family and friends know that I was getting weaker. (My parents knew about the disease from when I was diagnosed after a car accident in 2004; but at the time, we were told symptoms would manifest later in life.) The disease was becoming impossible to conceal; it turns out that struggling to climb stairs sets off alarm bells in peoples’ minds.

Everyone was concerned by my physical decline and wanted to help in any way possible. My parents offered to make the trip from Connecticut to Boston every two weeks to help me grocery shop and cook meals. My roommates volunteered to do my laundry so I wouldn’t have to trek up and down three flights of stairs. Jen, who lived in North Carolina, invited me to visit her any time I needed to escape Boston.

My family and friends made my life much easier, chipping in whenever I needed assistance. I am forever grateful for how they stepped up to the plate in those early days. But they were only aware of the physical symptoms. My emotional turmoil was a different story.

They didn’t know it was eating me up inside that I could no longer shoot a basketball.

They didn’t know about the piercing stares I received anytime I got on an elevator to go up one floor. 

They didn’t know about the corrosive envy I felt as I watched my friends achieve all the life milestones I wanted for myself — falling in love, having kids, buying homes in the suburbs.

They didn’t know about the self-loathing for who I had become, how instead of facing my challenges head-on, I withered under the pressure.

They didn’t know about the panic attacks that occurred any time I contemplated the future.

They didn’t know any of it — and yet, I wanted them to know.

I wanted to offload my burden onto someone who cared. But years of shrugging and deflecting had come back to haunt me. I lacked the experience to lay bare my emotions and let people know what was going on.

“What’s wrong, Chris?” my mom asked when my parents came to visit three weeks before my trip to the ER. “You’ve been so quiet. Is everything okay?”

“I’m fine.”

My mom could tell I was lying. “Did something happen? Did you fall? Are you in pain?”

I wanted this to be the moment. I was ready to tell my parents that I was struggling. I knew they wanted to help.

The words were inches from spilling out.

I’m overwhelmed.

This disease has taken over my life.

I hate how I’m handling it.

I hate that I’ve equated my self-worth to how strong I am.

I’m envious of my friends advancing in their lives and careers.

I’m tired of seeing people enjoying themselves.

I resent everyone’s success.

I’m mad at the world.

I’m scared of the future.

“I’m fine. Just tired, that’s all.”

If only I had known the relief waiting for me on the other side.

---

I was released from the hospital at daybreak, my path forward as clear as the orange sunrise sneaking up behind the Boston skyline.

I needed to change.

I had to find a way to push through the discomfort, to open up and ask for help, whether to a therapist, friends, or my parents. To someone, anyone.

“I’m fine” wasn’t going to cut it anymore.

When I returned to my apartment, I collapsed on my bed, still donning the dirty t-shirt and sweatpants dug out from the hamper three hours prior. 

Although exhausted, my mind raced. I had to find the root cause of why my mind and body melted down so suddenly. So severely.

In retrospect, my previous panic attacks were warning signs, internal pleas to reverse course and seek help before I tumbled into the abyss. Warnings that I ignored.

The disease shared some of the blame, but, deep down, I knew it was just fanning the flames of an existing fire. Years of suppressing my feelings and avoiding uncomfortable conversations pre-dated my muscle weakness.

Over the next few days, I sought out the source of my hesitation. If I could better understand why I struggled to open up, then I might feel more comfortable reaching out to someone.

What choice did I have? One trip to the hospital was enough.

After days of soul-searching, my self-examination identified three barriers that kept me from asking for help: pride, fear, and shame:

Pride - I took pride in being self-sufficient. Before my disease, I thrived as a young adult. I did well in school, had many close friends, and loved living in Boston. Then the symptoms started, and it made clear just how much I could accomplish on my own. By needing help, I felt like a failure.

Fear - I didn’t want my family to worry about my health more than they already did. I was also afraid that, by sharing my struggles, people would think less of me.

Shame - I was ashamed….of everything. I was ashamed I was so insecure. I was ashamed that I attached my self-worth to what people thought of me and what I looked like. I was ashamed that I didn’t handle my challenges better. I was ashamed that I didn’t open up sooner.

These were sobering conclusions, but they were necessary to shine a light on the darkness within me. 

Once I surfaced these barriers, I sought to dismantle them:

Pride - I was only a failure if I didn’t ask for help. Suppressing my struggles to the point of a panic attack was ludicrous. By asking for help, I’d be exercising my independence. I’d be admitting that I didn’t have all the answers, which was a level of maturity and self-awareness that most people never reach.

Fear - What if something worse happened to me because I didn’t open up? How would my family feel then? That would be much scarier. As for rejection: would they really think less of me? Of course not. I had many people in my corner rooting for me.

Shame - My value and worth came from God, not from what people thought of me or whether I could climb a staircase. My insecurities were understandable — no one likes being stared at — but my disability didn’t make me inferior. There was also no shame in making mistakes; no one handles adversity perfectly. And everyone struggles to ask for help.

I knew that these barriers were paper tigers, but for transformative change to happen, I would need more time.

---

In September, my parents came to visit a few days before my 27th birthday. When I opened my apartment door, they were taken aback by my condition. My hair was unkempt. I had bags under my eyes. I hadn’t shaved in days. Instead of being in a celebratory mood, my mom could see, once again, that something wasn’t right.

“What’s wrong?” she asked as she settled into my leather desk chair.

I looked over at my dad, who was standing in the kitchen pulling groceries out of plastic bags. They both looked at me with concern, deciphering my body language, waiting for a response.

Habit implored me to resist. I’m fine. But I knew, deep down, that this was my chance. This was the moment I had been working so hard to overcome.

I took a gulp of water on my nightstand. Before I had a chance to stop myself, the words finally, mercifully, tumbled out:

“I’m struggling.”

“How so?” My mom was concerned but composed. I would later learn she was relieved I finally expressed what they had known for months.

I took a deep breath.

“Just….the weight of everything that’s happened the last few years. The weakness. The falls. Carly passing away. I’m about to turn 27, and I don’t feel like I have much to show for it. No girlfriend. My job has stagnated. I keep thinking about the future, all the uncertainty. I’m not sure how I’m going to deal with it.”

An uneasy silence lingered in the air. Finally, my mom spoke.

“You’re going to face this with us, with Jen, with your friends. You don’t have to face this alone. You know that, right?”

“Yes.”

“How long have you felt this way?” my dad chimed in from the kitchen.

I sat down on my bed and sighed. A wave of relief rushed over me.

“A long time. A really long time.”

And with that, the weight of the world lifted.

---

In the weeks after my parents’ visit, whenever we talked, they made it a point to ask me detailed questions. Even if they couldn’t solve every issue I faced, they at least knew what the issues were now. They vowed to help me in any way possible. But most importantly, they validated my feelings.

I didn’t realize how much I needed the validation until I received it. For so long, I thought my struggles were unique, that they were the byproduct of errant thought processes, deep-seated insecurities, and dumb mistakes.

Hearing that I wasn’t crazy made all the difference.

Opening up to my parents provided a blueprint I could use with other relationships in my life.

Whenever a friend or coworker asked how I was doing, instead of saying “I’m fine,” I let them know about my fear of getting new adaptive equipment or that I was concerned about an upcoming strength test at the hospital.

When I talked to my boss, I didn’t shy away from the fact that it was getting harder to commute to and from work every day. She suggested I work from home more often.

When I grabbed drinks with my former roommates before Thanksgiving — the ones I hadn’t told about my disease for two years — I knew I had to be more open. By hiding my symptoms from them for so long, I caused unnecessary drama when I had to break our lease because I could no longer climb stairs.

“I should have told you sooner, you know?” I said in a contemplative moment, beer aiding in my courage. “I made things so much harder than they needed to be.”

I don’t blame myself anymore for how I handled the early years of my disease. So much was changing, so quickly. Although I wish I had built an infrastructure of support and love from the get-go, once I realized that everyone wanted to help me, once I realized that my struggles and challenges weren’t unique, I was able to course correct.

But it wasn’t all smooth sailing. It was one thing to tell people I needed help; it was another to take them up on it.

Soon, life would give me the chance to see how much progress I had made.

In early January, I slipped and fell in the middle of an intersection near my apartment in Cambridge. Good Samaritans helped me to my feet, but the incident left me bloody and shaken up. Another few seconds and I would have been flattened by oncoming traffic.

I thought about holding it in, hiding the event from those closest to me. Instead, when I called my parents that night to discuss their upcoming trip, I told them what happened, details I would have left out in the past.

“I’m glad you told us,” my dad said. “Perhaps the treads on your sneakers have worn out. Do you need us to go shoe shopping when we come up?”

I turned my sneakers over. The tread was smooth on the right heel, where I slipped. I was so consumed by the incident that I hadn’t thought of why it happened. 

“You’re right. It was the shoes.”

Sometimes, the most effective help is walking alongside someone’s hurt and brainstorming solutions. My dad was always a problem-solver; it felt good to let him do what he did best.

---

 The more I shared my struggles, the faster I climbed out of the abyss.

The tough moments continued, but by talking to people, by letting them know that life was a grind, a funny thing happened: my panic attacks disappeared. 

I still hit walls. I still had bouts of depression. I still had moments when I wasn’t able to verbalize my feelings. But instead of clamming up, I resolved to tell people. Even if I didn’t feel comfortable sharing every last concern and fear, telling them something was better than nothing.

Every incremental ask for help strengthened my relationships. I felt closer to my family now that I knew we were in this fight together. I also grew closer to my Boston friends, who ran errands, bought me food, and texted me periodically to check in.

My support system grew, brick by brick, to the point where, in early February, I felt comfortable enough with my progress to take arguably the biggest risk of my life: leaving my job in the fall to get my MBA.

Business school would be the ultimate test. There was no way I could get through a 2-year, full-time MBA program without relying on multiple people — family, friends, and classmates — for support. It would take a village to help with the logistics of getting to and from campus, going to social events, navigating group projects and classwork, and interviewing for jobs.

In my not-asking-for-help days, this goal felt unattainable. But now? With the right support, I at least had a chance.

I applied and got into several schools in the Boston area, ultimately deciding on Boston College. 

But it wasn’t a done deal.

The night before I had to let BC know my decision, I barely slept. I couldn’t figure out if this was an achievable goal, or if I was leading myself headlong into disaster. 

Could I really do this? Would my mind and body hold up?

I went into work — deadline day — unsure what decision I’d make. Now that I had to choose, I felt the consequential weight of the moment. Either way, my life would never be the same. 

The web portal was open on my browser for several hours. Not only was it two years of my life I would be signing over, it was also a hefty non-refundable deposit. I didn’t want to say yes, only to reverse my decision a week later.

At lunch, a few of my coworkers gathered around my desk. The deadline was only three hours away.

“Well? What did you decide?”

I felt the familiar urge to recoil, to run away from a challenge beyond my strength. But I knew that if I was willing to rely on others for support — including my friends standing next to me — I would be just fine.

I looked up from the screen and smiled.

“I’m going.”

---

About the Author

Chris Anselmo is a Connecticut resident living with an adult-onset neuromuscular disease called limb-girdle muscular dystrophy type 2B. In his newsletter, Hello, Adversity, Chris shares resilience strategies and resources that have helped him on his rare disease journey.

By Glenis Redmond

I got the gift of gab from my Dad. My fourth-grade teacher, Mrs. Kathrine Priest, wrote on my report card in the English section: oral work is excellent; Glenis enjoys talking, acting, and singing before the other children. I hope she develops this talent. I was that kid, the animated kinesthetic one acting out any story or scene with dance, humor, and timing. I was always the student called upon to read stories and poems out loud. Once, my teacher asked me to read “I Wandered as Lonely as a Cloud” by William Wordsworth, and my classmates met me with wild applause. I felt not only heard but seen. In retrospect, Mrs. Priest was very strict and stern, yet she was one of the only teachers who saw the storyteller in me. Wherever she is now, I hope she can see that I developed my talent by becoming a poet and a teaching artist.

Who knew while running around the world professionally telling stories for twenty-seven years that I would end up here––fighting for my life in my 55th year? Maybe I should have known something was wrong when I had developed a dull throb at the base of my back and that my knee hurt so bad that I had a noticeable limp. I was hobbling around the office at the Peace Center, where I was the Poet-in-Residence. I took no real note of my gait until a co-worker asked, “What happened to you?” I brushed her off with a clipped response, “Oh, it’s just my Fibromyalgia acting up. I thought it was just that. I have been dealing with Fibromyalgia since 1992, which meant I was accustomed to muscle pain and flu-like symptoms. I had learned to push through.

However, on this day, my co-worker just shook her head and raised one eyebrow, and this non-verbal communication of concern was enough for me to schedule an appointment with my nurse practitioner. She advised me that we should do a complete physical with blood work. I told her that I was leaving for a poetry residency in New Brunswick, New Jersey, for the State Theatre in a few days and would be gone for three weeks. She said, “Let’s do it when you return. The physical will be six months early, but do not worry; your insurance will pay.” I agreed. I was dubious that the physical or the blood work would reveal anything because my last physical was routine with no red flags. I thought this was just the slippery life of Fibromyalgia, and all I  needed to do was rest and take muscle relaxers to gain my footing again.

So off, I went on my 21-day poetry community residency in New Jersey, which consisted of at least three to four engagements daily. The events included poetry readings or workshops, which could occur at a school, a corporation, a conference, a prison, a halfway house, a detention home, or a church.

As a former counselor, poet, and teaching artist, I aim to create safe spaces for participants. In each setting, my goal is not necessarily to make people poets but to make them aware of the poetry in their lives. It is challenging but gratifying work.

At one school, the principal apologized; he told me he was glad I was there, but these students would not want to learn poetry and were gang members. By the end of our time together, I got buy-in; these young people shared heartbreaking stories through their poetry. They moved me so much that I wrote a poem called “Bruised.” The poem ends like this: I know this detour we took/ down old roads is a place we had to go,/ places where we have been loved so hard it hurts,/so hard we are still bruised./ We bear our scars,/ then we pick up our pens/and write.

The red X on my map that said I AM HERE was not so much a geographical locator but defined my identity, how I saw myself, and how others saw me——a Mama, a Gaga, a Black woman poet, and a fierce literary citizen. I stand firmly in poetry and my outreach of it. I also embrace the unconventional artist road life that I live. However, my May calendar that year was packed as always, but it felt more taxing. During the residency, I was dragging and exhausted. I knew something was off at my core. I pushed and pushed through. When I returned home, the terrain of my life swiftly became unrecognizable.

I had my blood work done before I returned to the doctor for my physical. I saw the red flags on MyChart populate. Eventually, I noticed that I had a Monoclonal M-spike. I copied and pasted that phrase into Google. Instead of fifteen possibilities of how I would meet my demise, there was only one option: Multiple Myeloma. In the privacy of my own home, I learned that this meant blood cancer. I did not cry; I went numb. I did not tell my Mother or my twin daughters Amber and Celeste immediately. I kept this knowledge to myself until the official diagnosis. I dreaded telling them and I hoped the blood test was wrong. However, when my nurse practitioner entered the room at my appointment, she had tears in her eyes. I told her that I already knew. I felt immense shame and failure. Who was I without caring for my family and friends and traveling the world giving poetry away? I had lost my footing. This was quite a turn; the caretaker had to be cared for.

I began doing the cancer dance of weekly blood draws, chemotherapy, and steroids to get ready for a Stem Cell Transplant. This process all transpired during the six months before the pandemic. I had already been homebound before the rest of the world shut down. I had been saying that I needed to slow down for five years. Be careful of what you ask for; you might just get it. Stage III Multiple Myeloma told me to sit down––to have several seats. Being still is the most challenging work for a doer. This is when I discovered my screened-in patio. Who knew? I had a new relationship with it and the cast of characters that inhabited my backyard, Pine.

What Emily Dickinson Said About Hope

Called it a winged thing  perched on the soul

From my backyard, I agree.

Through the most challenging year of my life

my feathered friends came through.

The red streaks of the Cardinals

dot the pine-like Christmas tree ornaments.

The next day mourning doves

wake the day with their sorrow-filled calls.

Our state bird, the Carolina Wren, claims

not only South Carolina but also my sanctuary;

my heart belongs to the hummingbirds with their

incandescent darting. Surely, good omens are to follow.

Then, the brilliant blur of Eastern Bluebirds.

Between the leaves, my eyes can never take in enough

of this tarot reading of wings.

I hold on as they lift off into the cerulean skies.

People say that I’ve gone to the birds,

I disagree. I believe. I’ve lived here all along.

I spent most of my time at home with my grandson, Julian. He and his Mama, my daughter Amber, live with me. Julian was five years old when I was going through the most arduous stages of cancer. He and Amber both were my lifeline. Yet, I hated him seeing his Gaga sick, bald, and frail, but we are a multi-generational household. We both suffered. He had spectrum and sensory issues. I was dealing with not focusing too much on dying. While Amber was working, I taught him board games: checkers, Chutes and Ladders, Battleship, and Trouble. We had great fun, but we were the ones who were troubled. As I got stronger, we began frequenting the South Carolina State Parks. I knew we needed to be out in nature. We loved the adventure so much that we wanted to visit all forty-seven state parks to earn the Ultimate Outsider classification granted by the South Carolina State Parks. We have been to twenty-two. We had to do something to shift our outlooks. If I were to die during this cancer ordeal, I wanted Julian to have a treasure chest of memories that we had built. I eventually published a poetry book about our excursions, The Song of Everything: A Poet’s Exploration of the South Carolina State Parks. This is an excerpt of a poem titled “Dear Grandson”:

 “Julian, I want you to know

every wonder belongs to you,

though some will say to you otherwise.

Go anyhow: Your passage

has already been paid.

Be an Ultimate Outsider

wherever you go.

It’s up to you to forge on.

Remember, it’s the destination and the journey.

Remember our rain prayers.

Remember, even when I have turned

to nothing but air and am carried

away by a strong Gale.

Know I will be there with you

out in the green and gold meadows

in the gloaming.

My hand will be in yours.

I will be singing as everything sings to you.

Grandson, listen with your whole self

and with your whole self

sing back.”

I wanted to live. I knew there was a good possibility that I could die, but I wanted to live for myself, especially for Julian and eventually for my newest grandchild, Paisley. [I now have another granddaughter, Quinn.]

For six months, I was readying for the Stem Cell Transplant. At first, I did not look cancer-ish, with no hair loss and no weight loss. Many people told me that I looked good and didn’t look sick. I was grateful for this small mercy, But often, I wanted to reply to that comment with, “Multiple Myeloma is an inside job.” When I finally reached the point that I was ready for a Stem Cell Transplant, I slid the most. I was having an autologous transplant. In other words, I was my own donor. This harvesting was not event-free, though I told it would be. My blood pressure went dangerously low. I eventually pulled through, and the next week, I was admitted to the hospital for my twenty-one-day stay. During this process, I had fear. I felt terror. I felt rage. I felt sorrow. I felt grief and loss, but I did not speak of it.

The first day in the hospital, they gave me my cells back. Then, the next day, they gave me high-dose chemotherapy. This is when the fight began. I was in the wilderness. I did not know who I was, let alone where I was–– wild-eyed and weathered between pneumonia, vomiting, and constant diarrhea. I hung on with teeth and claw. During my stem cell transplant, my Mother would come and sit by my bed and not say much but stare at me as if she was lending me some strength to live. I was delirious, going in and out of a morphine haze. My daughter Celeste (one of my chief medical advocates) said I was conversing with people not in the room. I made it through this part of the woods. When I was released from the hospital after the Stem Cell Transplant, I was bald, bloated, and looking very much like my own grandfather. This is when I looked cancer-ish. I received gawks when I went out in public. There was no denying I had cancer.

Though I had survived the worst and had achieved remission, I still had to return to the hospital for weekly infusions––yet all I wanted to do was go home to cocoon and heal in the comforts of my home. My hope was deflated. It was an uphill climb. I had pain from multiple sources. I had bone pain from Multiple Myeloma from lytic lesions on my skull, clavicle, and femur. I had muscle pain from Fibromyalgia. I had nerve pain from neuropathy in my feet and hands. In other words, it was and still is pain on top of pain on top of pain. I never went back to a 9 to 5 position because I am physically and psychically beat up.

I lost so much, and I began to take stock of my losses: My livelihood. My gait. My energy. My ability to dance. I am a dancer. Think old school: Prince or Cameo. I could not walk around my neighborhood daily because it was too high impact, and it hurt. I couldn’t wear my beloved Fluevogs shoes. I have a collection. Don’t ask how many. My favorite is the metallic orange Bebop boots. Think Alice in Wonderland meets Parliament and the Funkadelics. I remember taking on virtual keynotes and poetry workshops too soon; I was very winded. People wanted the old me, and I wanted the old me, but she was not there. I needed to give myself more space to get stronger and healthier and learn who I was in this now.

I am still reckoning with what I can and cannot do. I am fully aware of my limitations and the life expectancy of Multiple Myeloma patients diagnosed at Stage 3. Don’t google the statistics. It is sobering, but I rest when I need to rest. I use Trazodone to battle my cancer insomnia. I get up to write poetry, to garden, and to spend time with my mother, children, and grandchildren. One of my greatest lifelines is talking weekly or sometimes more to my brother Will on FaceTime. He lives in New Zealand. Later, when I was out of the woods he told me, “Glenis I really thought you were gonna die.” I appreciated him showing up. We joked a lot. We tried to right the world.  I am thankful for my family and my community, which cares for and about me. However, some days, I still feel lost in the wilderness of cancer. Somedays, I feel broken and withered, but I do my best to make meaning and strive to find purpose. I remind myself now is all there is. I remember to breathe in fully. Remember to enjoy all the growing things around me, including me. Know that there is rugged terrain in the wilderness, but there is also beauty. Remind myself that I am here to claim my space and in my Glenis-way––Bloom Anyhow!

My Favorite Season: Love

I felt the Tacoma Fall chilled air

as I walked alongside Renee

buttoned in my favorite coat,

the one with a faux fur collar

and magnetic clasps as buttons.

I struggled to match her long stride

but we twinned with our plaited hair,

when we entered her hush-filled home

she did not warn me of her mama

lying on the couch taking a nap,

on her way somewhere

from which she would not return.

Every one of her bones pronounced,

but I was not afraid; I felt the room

hum around me like it did in chapel

when the rays of light shone on me

through stained-glass windows

when she extended her skinny branch

of an arm and circled me with her voice

clear as the dome of sky outside

“Glenis, come here. Don’t you know I love you?”

Me, a scruff of a muffin little girl

what did I know of love?

But her words made a solid landing.

I think it was about the place she was going.

I think it was about those three words.

Every Autumn, I think of Mrs. Langley

when the leaves turn golden, rust, and ruby

and begin their dancing descent,

I can feel her brightness upon me

especially now on my cancer journey.

I remember the gift she gave me

and now I too, never hesitate to say

to anyone in need, I love you.

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About the Author

Glenis Redmond is the First Poet Laureate of Greenville, South Carolina. She is a 2023 Poet Laureate Fellow selected by the American Academy of Poets. Glenis has published six books of poetry. Her latest books are The Listening Skin (Four Way Books), Praise Songs for Dave the Potter, Art by Jonathan Green, and Poetry by Glenis Redmond (University of Georgia Press). Glenis received the highest arts award in South Carolina, the Governor’s Award, and was inducted into the South Carolina Academy of Authors in 2022. The Listening Skin was shortlisted for the Open Pen America and Julie Suk awards. Glenis has performed nationally and internationally from Hawaii to Haiti. She has toured in England: London, Liverpool and Luton. She speaks for the U.S. Department of State's Bureau of Educational and Cultural Affairs (ECA) US. She presented in Muscat, Oman, in 2016 and virtually for students in Guatemala and El Salvador for Juneteenth in 2023. Glenis is a veteran and a former Captain in the Army Reserves. She is a medical advocate. Glenis is a mother of twin daughters, Amber and Celeste. She is a Grandmother (Gaga) to Julian, Paisley, and Quinn. Glenis believes poetry is the mouth that speaks when all other mouths are silent.

Photo Credit: Eli Warren

Photo: Pexels, Andrew Patrick

Little did I realize, as a survivor of trauma and loss, how much my lifelong capacity for wonder had been so vital to my recovery. I’d never recognized my ability to be amazed and wowed as a true strength, and no one I’d known had ever validated these qualities as a sign of strength, wisdom, or even maturity. If anything, being awestruck or wondrous was something akin to being gullible, naïve, or childlike. Yet profoundly healing encounters with awe and wonder are common experiences for survivors of trauma and loss. Indeed, a powerful moment of awe with a great blue heron saved my life decades ago.

Recently neuroscience has shown us the healing power of wonder, though previously underexplored and underappreciated. Now researchers echo what ecologist Rachel Carson believed was essential for human survival: “Those who contemplate the beauty of the earth find reserves of strength that will endure as long as life lasts.” In the same spirit, I’ve launched a storytelling project and a YouTube channel called Healing Through Wonder, dedicated to the resilience-building gifts of awe and wonder for those living with grief and trauma.

Healing Through Wonder explores the power of moments that take our breath away and open our minds. In a post-pandemic, cynical world where many of us have lost faith in humanity or lost time doomscrolling through social media, it’s heartening to know that neuroscience research supports our awe-inspiring experiences despite the pessimism around us. Studies published by the Greater Good Science Center and the American Psychological Association show how our sense of wonder helps heal loneliness, trauma, and grief by giving us meaning, purpose, and a wider, more open perspective. In the past few years, exciting bestselling books such as Dacher Keltner’s Awe: The New Science of Everyday Wonder and How It Can Transform Your Life have been released on the neuroscience of wonder with evidence that even one moment of awe can transform our lives.

Indeed, one moment of awe did truly change my life—or saved my life. My story centers around a profound encounter with a blue heron at the age of twenty-four.

In 1979, as a homeless survivor of domestic violence, still running from my former partner, and in suicidal despair, I was ready to end it all at a campground alone by a river. I had a full bottle of valium in my hands, and beside me, another bottle of cheap red wine to wash it down. Out of the wide, twilight sky a majestic heron circled overhead and landed remarkably close to me—about ten feet away. In the dim, rising glow of the moon, the heron’s piercing eyes stared into mine, and I froze in amazement, entranced, causing me to stop swallowing the pills. This moment of sheer awe saved my life, as I realized there was just too much beauty and magic in the world to give up.

Naturally, after such a spiritual awakening, I followed herons to their wetland sanctuaries for years. Wandering and watching them quietly in their providence, I marveled at their stillness standing in shallow waters, or their determination to build nests with their mates, their elegance dancing in pairs as courtship, fishing, preening, and flying. I learned lessons about dignity, balance, grace, patience, the art of timing, and much more.

Robyn Houston-Bean, Founder of the Sun Will Rise Foundation, Co-host of the Healing Through Wonder project.

After four decades of wondrous encounters with herons and studying the neuroscience of wonder, I’ve joined with a colleague, Robyn Houston-Bean, the founder of the Sun Will Rise Foundation, to co-host storytelling sessions for our Healing Through Wonder project. Robyn has also found profound healing in experiences of awe and wonder and tells her story of a surprising encounter with a dragonfly after the death of her son, Nick. She describes a moment that took her breath away as the dragonfly stayed with her at her son’s graveside as she grieved, resting on her arm, her hand, hovering around her, following her. In her amazement and attunement to the dragonfly, she welcomed a sense of connection with her son and a sense of oneness with everything around her, opening to a warm, reassuring sense of peace. She now believes, as strongly as I do, that people struggling with grief, trauma, or addiction can be encouraged to claim their sense of awe and wonder in their healing—in nature, as well as in music and the arts, in spiritual rituals, in adventures and quests to other lands, in marveling at human acts of courage and ingenuity.  

Through the Sun Will Rise Foundation, Robyn facilitates groups for those who are grieving the death of a loved one due to substance use and she has heard many healing stories of wonder from group participants.

Thanks to Robyn and other storytelling guests from The Sun Will Rise Foundation as well as storytellers from SADOD (Support After a Death by Overdose), our Healing Through Wonder channel includes firsthand accounts of wondrous encounters and uncanny synchronicities. Reflecting on these unexpected, life-changing moments, we examine the healing effects of what captivated and transformed us.

On YouTube: Robyn Houston-Bean, Val Walker, and storytelling guests Carol Bowers and Tanya Lord

Stories of wonder, awe, enchantment, and reverence that had been secretly tucked away for decades are generously shared on our Healing Through Wonder channel. Our stories show how our wellbeing thrives on our willingness to open ourselves to encounters of awe and wonder, no matter how brief or fleeting or odd. There’s a whole, wide, dazzling world to amaze us beyond the din our overthinking minds, ruminations, or nagging inner chatter. Our willingness to look up and be amazed can turn a bad day around, or give us pause in a good way, or even change our whole outlook on life.

As our project develops and as Robyn and I learn more about the healing power of awe and wonder, I’ll be blogging here about the exciting science of awe as well as sharing experiences that have sparked our recovery from trauma and loss.

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About the Author

Val Walker is a contributing blogger for Psychology Today and the author of 400 Friends and No One to Call, released in 2020 with Central Recovery Press. Her first book, The Art of Comforting (Penguin/Random House, 2010), won the Nautilus Book award and was recommended by the Boston Public Health Commission as a guide for families impacted by the Boston Marathon Bombing. Val received her MS in rehabilitation counseling from Virginia Commonwealth University and is a rehabilitation consultant, speaker, and educator. Her articles and Q&As have appeared in AARP, Caregiver Space, Babyboomer.com, Caregiver Solutions, Time, Good Housekeeping, Coping with Cancer, Boston Globe Magazine, Belief Net, Marie Claire, and Sweety High. Keep up with Val at www.ValWalkerAuthor.com

You can also learn more about the Healing Through Wonder project through their YouTube channel, The Sun Will Rise Foundation, and Support After a Death by Overdose (SADOD) project.

On March 3, 2024, we held our second annual event, “Reclaiming Our Mental Health Stories”, during which we shed light on the experiences of individuals navigating their mental health journeys, which are often stigmatized, dismissed, and underdiagnosed. Experience the power of storytelling as you listen to Marina, Nathalie, and John, three courageous storytellers who shared the challenges and insights they’ve encountered on their journeys with mental health.

On February 4 2023, we held our inaugural annual event, “Making the Invisible Visible”, during which we shed light on the experiences of individuals navigating “invisible” chronic illnesses which are poorly understood, challenging to diagnose, and often dismissed by the healthcare establishment. Experience the power of storytelling as you listen to Katy Morly and Lili Fox-Lim, two courageous storytellers, who shared the challenges and insights they’ve encountered on their journeys with chronic lyme disease and myaligic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

When I was 15 years old, I told my pediatrician that I ate very specific foods at very specific times of the day, and when my eating didn’t go exactly to plan, I made myself throw up. She nodded and then left the room. When she came back, she handed me some papers, the same way that my teachers handed out worksheets in class. Each paper was titled with a different word that I didn’t recognize.

“You have anorexia and bulimia,” she said.

I remembered how, in middle school, I bought one of those celebrity gossip magazines at the grocery store. The cover featured Demi Lovato, and it talked about how she used to starve herself all day, then eat everything in her cupboard at night, and then make herself throw it all up. I read the words “binging and purging.” I remember feeling so sad for her, but thinking it would never happen to me because things that happen to celebrities didn’t happen to normal people.

So I said to my pediatrician, “No I don’t, because I only do it sometimes.”

I left the doctor’s office with my new handouts and a lollipop for my troubles.

There was a time when what, when, and why I ate never crossed my mind. But when I was 12, I remember coming home from school with a new fact I’d learned.

“Did you know that when you eat bread, it all just breaks down into sugar in your stomach?” I said this to my mom, a gastroenterologist. She giggled, enviously, at my simplified outlook on the world.

These were the years when I begged my babysitter to take me to Cold Stone every day after lacrosse practice. She’d say, “Only if you eat the whole thing.” I would order cotton candy ice cream with fudge, caramel, and gobs of cookie dough. I scraped my cup clean every time, and then I’d make a toasted plain bagel with Nutella at home. When dinner was served shortly thereafter, I’d use my fork to scrape my grilled chicken and broccoli onto my dad’s plate. My stomach had no room left, stuffed with foods that I had learned all break down to sugar in the end.

My father is a facial plastic surgeon, an expert in making people more attractive. And my mother, the gastroenterologist, knows exactly what to eat to be “healthy.” But my parents never tried to fix my 12-year-old diet. When I gave my dinner to my dad each night, I’d call him my garbage disposal, and he’d return a gaze that said, Again? but his judgement ended there. I believe they were concerned about my food waste more than anything.

I sustained my Cold-Stone-and-Nutella-bagels diet until I grew breasts in eighth grade. Puberty is terrifying for adolescents. Adults avoid change like a sickness, scared of a new routine and way of being. But in puberty, adolescents have no choice. My shirts that used to drape off my body began to hug my chest, and training bras simply didn’t do the trick anymore. I bought bras that were a size too small, to hide them. The worst part was that I was navigating the change alone, as most of my friends still had boards for chests.

During puberty, I learned another fact: breasts are made mostly of fat. So, if I was growing breasts, it must have meant that I was getting fat. I told myself this as I entered high school. At 14 years old, I could look 18 with some makeup and a low-cut shirt. Instagram taught me to look and act older than my age, which meant to have breasts, but not too large, and to have a thin waist, but not too thin. After a beach vacation, I posted an edited picture of me in a bikini. Smooth the face, pinch the waist, and enhance the muscles. Fruit and spinach replaced bread and pasta. I convinced myself that I was lactose intolerant so that no one would ask me if I wanted ice cream or “cheese-on-that?”

My body caught the attention of a boy. He and I were in the same math class. We would FaceTime to do our math homework together, which turned into me doing his math homework for him. I liked him for his charm and the validation that he gave me: if I didn’t like my body, at least a boy did. And so, the more attention he gave my body, the more I paid attention to my body, and then he liked my body more, so I liked him more.

At the same time, I was flying all over the country for lacrosse camps and tournaments. I played anywhere between 2-8 hours of lacrosse each day. I complained, but I secretly loved how much I got to exercise. I used it as an excuse to eat pasta and bread again. I fueled and refueled my body based off how many hours I exercised.

But, lacrosse went on pause in August, so I stopped eating. In 14 days, I lost 15 pounds. One day, I woke up and decided to be lactose intolerant again. I allowed myself to eat celery sticks, hummus, salad, and one egg at a time. I took daily pictures of my waist to document my progress. My waist was never quite thin enough, though; it wouldn’t be until I disappeared completely.

During this time, my family visited Jackson Hole, Wyoming. While hiking the Tetons, I bought a sandwich with mayonnaise so that it would spoil in the sun, and I would have nothing to eat. I made my family turn around because I was nearly passing out hiking. Feeling guilty about my lack of exercise, I ran four miles when we got back to the hotel.

Later that night, my mom came into my hotel room. She lowered herself slowly onto my bed, as if the bed was as delicate as the subject matter at hand.

“Dad and I think you look too thin,” she said.

“I’m just sick of eating pasta and carbs all the time,” I lied. “And I’m not playing lacrosse, so I’m just not as hungry and I just don’t look as strong.”

I don’t remember the rest of our conversation because the only thing that mattered was that someone called me “thin.”

There are a few memories from August 2016 that I will never forget. One night, my mom found me with my head in the toilet. We had pizza for dinner, and I was trying to get rid of it. It was the first substantial meal I had eaten in two weeks, and when we locked eyes, our eyes were glossy with understanding.

The next morning, my mom asked her friend, an athletic trainer, to come talk to me. I didn’t know the word at 15 years old, but this was an intervention. I’m sure he told me all about what, when, why I need to eat, but everything went in one ear and out the other. I ate a piece of cold pizza in front of them to show them I understood.

When they made me start eating again, I started running four miles each day. My foot began hurting, but I didn’t stop. I was seeing the boy from my math class in a few weeks, and I couldn’t lose all the progress I had made.

At the end of August, a group of our friends met up at the beach. I was so excited for the boy to see the progress I had made on my body.

That night, he had sex with me when I said I didn’t want to have sex with him.

“Please,” he whined.

“Okay,” I complied.

It hurt and I felt suffocated. I felt like a grown woman and a total whore, and I thought that they may be one in the same.

At 15 years old, I struggled to comprehend what had happened to me. I spoke few words for a week. I wouldn’t let anyone get within an arm’s length. Each night, I’d jolt awake, suffocating, hysterical, throwing pillows, punching air, pulling my hair. I’d been cracked in two.

I first spoke about the beach incident with my therapist, then my mom. It seemed like everyone knew something I didn’t, like I had spinach in my teeth and no one would tell me.

I kept running. He didn’t love me, which made me want to eat everything, which meant I had to keep running. I ran so much that I broke my foot, and when my foot healed, I made new eating rules. I wasn’t allowed to eat carbs after 6PM, unless it was the night before a lacrosse game.

The rest of high school came and went like the ocean’s tide. I was pummeled at times, pulled into a riptide, overthinking every meal. These times often ended in my eating everything else before I ate what I wanted in the first place. But other times, the water was calm. Eating felt simple; I ate what I wanted until I wanted to stop.

During my senior year, I strung along enough calm eating days to convince myself that I had overcome my eating disorders. I had been accepted to Brown where I would play college lacrosse, so food became “fuel” for my sport. I wrote my college essay about conquering anorexia and bulimia, and then I gave a speech about it to my entire school. I was the girl who handled adversity, who lived to tell the tale.

And then, I relapsed. When the pandemic hit during my first year of college, I was pulled right back into that riptide, trying to equalize my calories to my exercise. That year, I made myself throw up after binging at Christmas dinner. I peered at myself in the mirror afterwards. Through a blurry gaze, I asked myself, Who are you?

I am an anorexic and bulimic girl in recovery. I’ve realized that you don’t get over these diseases like the annual flu. They’re dormant at times, and they resurface at inconvenient times. Playing college lacrosse helps because anorexia isn’t an option: I have to eat to have energy. But—sometimes—my body looks bulkier here, and squishier there, and I restrict my eating accordingly.

The looming question lately is What happens once lacrosse is over? 14 years of using my body to serve a sport all comes to an end this May. I’m entering uncharted territory. Perhaps I’ll become the lost 15-year-old again with self-inflicted lactose intolerance. Perhaps I’ll revert even younger, back to my blissfully ignorant Cold-Stone-and-Nutella-bagels diet. Or perhaps, I’ll stay in this space where I look in the mirror and finally say, “Okay.”

About the Author

Nathalie is currently a senior at Brown University. She is majoring in English Nonfiction Writing and plays for the Brown Women’s Lacrosse team. Nathalie has a history with anorexia and bulimia, beginning in high school, and she continues to navigate challenges with disordered eating as a college athlete.