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.