When she was a teenager, Kristie began competitive weightlifting. The sport proved to cultivate a culture of restricting and binging, and she soon developed an eating disorder. Over the years, she cycled through various behaviors, including compulsively exercising, restricting, binging, and purging.

Kristie – like so many of us – was told her disorder was chronic, that “recovery” meant maintaining her eating disorder, not overcoming it. But she wasn’t willing to settle for this prognosis. So she sought out treatment options in the Northern Hemisphere, found Monte Nido, and embarked upon her path towards recovered.

Kristie speaks candidly about the challenges of recovery: there is no clear way it is supposed to look; sometimes it is necessary to follow a meal plan, but the goal is to move towards intuitive eating; she had to acquire basic life skills that the eating disorder prevented her from learning previously; her eating disordered mentality also manifested in finances and relationships; and the differences in motivation to start recovery versus to continue in recovery.

Now two years into committed recovery, Kristie serves as a mentor for those earlier on in the journey through a global eating disorder recovery peer support program called MentorConnect. She describes the unique recovery team that she had to create herself, as professional eating disorder recovery resources are greatly lacking in the Southern Hemisphere.

Kristie expresses her perspectives that hope is the “first and crucial” element in recovery, and how important it is to revolt against cultural messages that encourage body-hatred. Her story and her dedication call us all to join her in manifesting a body-positive, hope-filled society.

Born in England to New Zealand parents, Kristie grew up in Australia, but has been living in New Zealand for five years now where she currently works for Outward Bound.

Megan, a 23-year-old New Jersey native currently residing in California and pursuing a master’s degree in global public health, arrived at Monte Nido Vista on June 5, 2014. This interview took place in June 2015 during the week of her one-year anniversary.

Once consumed with restriction and compulsive over-exercising, Megan admits that currently she struggles with orthorexia, a condition where one obsesses about eating “healthy” foods. But she has moved past her former life of dissatisfaction with herself, by stepping out of life and into treatment, where she did major self-assessment. She found her “Soul Self” – also referred to as “Healthy Self” at Monte Nido.

Megan speaks about the imperative of connecting with people, especially those who are in recovery or have recovered. She reflects on the impact both her eating disorder and her recovery have had on her family. And finally, she shares the tools, motivations, and goals that help her stick with recovery.

Anna left her home in Burlington, Vermont to begin treatment at Monte Nido Vista on April 28, 2014. More than one year into recovery at the time of the interview, 25-year-old Anna is living in Denver, Colorado and pursuing a nursing degree.

Anna is admirably candid about the challenges of recovery. Six years into her eating disorder – which involved cycles of purging, binging, over-exercising, and restricting – it became clear that she needed more intensive support than just an outpatient team in order to break the patterns. The four months Anna spent in residential treatment and then a transitional living house in California were transformative, but life back in the real world proved surprisingly difficult.

Anna admits her eating disorder still tempts her and occasionally catches her off guard with unexpected triggers. In addition to support from her boyfriend Thomas, her parents, and the recovered therapist she works with, Anna possesses an impressive self-awareness and “Healthy Self” mentality that she honed in treatment. She discusses how she challenges cultural misnomers about what “healthy” means, and the benefits of life in recovery: deeper intimacy and presence in relationships, a burgeoning sense of spirituality, and growing motivation to heal in order to help others. Though it has been rocky at times, Anna is proud of and committed to her recovery.

Listen to more stories in the Eating Disorder Recovery series here.

What makes up the world, for me, is language. While the natural sciences contend that the world is made of matter—atoms, molecules, cells, genes, tissue, organs—I believe that language accounts for what happens between people. We don’t just pass down genes. We inherit the words we speak. We don’t just care for our own bodies. We care for our own stories.

I arrived at Boston College certain that I would study English and love it, but after a year of introductory English classes, I felt entirely uninspired. What was the matter? When it came to the stories, what mattered?

During sophomore year, something happened in my own story. I stumbled across a news article about a new interdisciplinary Medical Humanities minor. Medical humanities is a field devoted to the humanistic and cultural study of medicine, caregiving, illness, disability, and representations of the body; it values the interconnectedness and complexity of these issues, looking at them from different perspectives in order to better understand them. These topics have always been present in my life: my sister works in a lab, my twin is studying medical imaging, my mother is an EMG technician, my parents cared for aging and ill relatives and friends.

Could medical humanities synthesize my love for literature and my interest in caregiving and healthcare?

Sophomore fall, I attended a symposium at Boston College on Genetics, Narrative, and Identity. Contributors to The Story Within, a collection of essays on genetic diseases and the complex life-stories and decisions surrounding them, captivated me with their candor, strength, and insight. The day culminated in a writing workshop and keynote address given by Rita Charon, M.D., Ph.D., who founded the field of narrative medicine. She made clear to me what it means to be present for another person, in sickness or in health.

I decided to enroll in an introductory medical humanities course. In the texts we studied and the conversations in which we engaged, the complexity and high stakes of the issues—genetic testing, public health, representing disability and disease—marveled me.

The most compelling text to me was Elaine Scarry’s The Body in Pain. She writes: “Whatever pain achieves, it achieves in part through its unsharability, and it ensures this unsharability through its resistance to language.” 1 Pain is that which cannot be put into words, cannot be represented; so specific, so individual, it falls outside of any system of communication. At the same time, pain is perhaps the most difficult thing for a listener to believe. If pain really did destroy language, dissolve the relationship between two people, what did this mean for me and my world of words?

But, more importantly, pain calls us to bridge the gap between individuals. Pain calls us to create something, to listen with empathy, to trust, to acknowledge the other, to bear witness. In sickness and in health, in pain and in pleasure, our words and our stories are what humanize us and connect us.

A friend of mine recently shared with me that she has been dealing with diabetes since she was two years old. She is one of the most driven, most involved students I know. I felt so fortunate and honored to hear her story and her insight. Her story and the conversations that followed strengthened our friendship.

In college, the stories of chronic illness or disability are so often untold and unheard. Built environments and institutional policies, sometimes established without consideration for those who have chronic illnesses or disabilities, can intensify these potentially isolating experiences. Laurie Edwards, a writing instructor at Northeastern University and a person with chronic illnesses herself, writes on the state of colleges for students with chronic illnesses or disabilities, shedding light onto the ways in which colleges fail these students.2 Students, faculty, and administrators should acknowledge these students and their individual needs. Making accommodations for these students and respecting their stories for these students will ensure that higher education remains accessible to all people—sick or well, disabled or able-bodied.

On a college campus, it is easy to assume that everyone is healthy, with crowds at the gyms and a vibrant and energetic student population. At the same time, illness is easily normalized. What college student hasn’t been exhausted? Who hasn’t caught a cold in a residence hall? We must heed narrative medicine’s call to honor the stories of health and illness in each individual, to acknowledge its specificity, and to listen with care and empathy. With this kind of attitude, we can perhaps see that the campus of the healthy and the campus of the ill are not different places: they’re the same.

Over the coming months, I will facilitate the sharing of stories about college students living with chronic illnesses or disability. Stay tuned for future features from me on these issues.

Christopher Kabacinski is a rising senior at Boston College, where he is studying English and Medical Humanities. He is a founder and the editor-in-chief of The Medical Humanities Journal of Boston College, a student-run journal featuring undergraduate work on issues such as medicine, health, illness, disability, bioethics, and representations of the body. Currently, Chris is working as intern at Health Story Collaborative. He is developing a project about college students with chronic illness or disability. If you or someone you know might be interested in sharing his or her story of health, illness, or disability, please contact Chris at healthstorycollaborative@gmail.com.

Resources:

1. Scarry, Elaine. The Body in Pain. Oxford University Press: New York, NY, 1985. Print. 4.

2. Edwards, Laurie. “When It Comes To Chronic Illness, College Campuses Have A Lot To Learn.” WBUR, Cognoscenti: Boston, MA. 5 March 2014. Web. Accessed 16 June 2015.

Health Story Collaborative hosts cool events where patients of all kinds get to tell their stories. I spoke at one event, and afterward, I walked on air and could feel a change in the vibration of my body.

Following my magnificent experience, I was honored to host one of these discussions in my home for a woman named Liz who was diagnosed with ovarian cancer. I didn’t know Liz – she was recommended by Health Story Collaborative – but she and her friends had wonderful energy and sharing her story in that way was as powerful for her as mine was for me.

Though Liz and I had much in common (similar in age, children of the same age, attitudes toward life, cancer diagnosis….), we didn’t stay in touch. Life gets busy, we all have our routines, you have to prioritize your limited energy during treatments, and we each have plenty of friends we already don’t get to see as often as we would like.

This week, I actively wondered about Liz and how she was doing. I didn’t even remember her last name to try and find her email address in my list of contacts, and contacting Health Story Collaborative to find her felt like adding another thing on my list of things to do, so I didn’t follow through. Liz’s well-being remained an unanswered question.

In the meantime, here is how my chemo holiday has progressing.

First and foremost – I love not doing chemo! I love being free from tubes, I love not carrying vomit bags with me everywhere, and I love having a clearer mind. I love having more than two weeks each month when I can do things that one needs and wants to do in life (grocery shop, hair and dentist appointments, kids’ school events, etc.).

Occasionally, I think about my CT scan results. The doctors saw some fluid near the anastomosis (surgical connection of two parts of my intestines that aren’t normally connected). The fluid can be simply nothing or it could mean that the Avastin (which has been working so well for me) may be doing damage to the stitching there. If there is damage, it is inoperable, and a tear in that area would likely be fatal. And not instantly fatal – it would more likely involve a long hospital stay and decline. For the record, that is not my preferred way to die. So if that were the case, that would mean no more Avastin.

I generally don’t look ahead; I mostly assume we will handle whatever comes up when it arises. But when I think about this particular potential conversation with my doctor, I do remind myself that if Avastin is no longer an option, I am lucky to have other options when it comes to chemo drugs. There is another drug, Erbitux, that many friends have taken and one friend is currently taking with successful results. The most notable side effect is a major skin reaction. It looks like you have acne or a red rash all over your body, which is usually uncomfortable. Given how sensitive my skin is on a good day (for example, I have to watch what kind of Band-Aid I use, or which tape they use on my skin at the hospital), I fear that my skin will be especially sensitive to this drug. Besides that, it is unsightly. I kind of like not “looking” like a cancer patient.

Mostly, I try to stay focused on the present. Admittedly, that is easier to do when I am feeling well. The snow is gone and while it has been chilly, the sun is starting to shine, so that helps.

However, I’ve also had many days filled with pain that make it hard to move or even stand, and nights where the pain keeps me from sleeping. Strung back-to-back for over a week, these days feel endless and discouraging.

I realized that I rely on living my life from miracle to miracle and I wasn’t noticing anything miraculous popping up, so that was bringing me down as well.

During that time, I did what I could. I booked more acupuncture. Tom Tam loaned me this device to wear to help with my pain. (I was skeptical, but it truly helped enough to get me up and moving.) I scheduled regular bodywork appointments with a local guru. I resumed calls with my energy worker. I did a reiki session that enabled me to sleep. I read funny novels and watched comedy clips on YouTube. I reframed any negative thoughts that made their way into my psyche.

Absentmindedly deleting junk emails this week, I noticed one about a new drug approved by the FDA, ramucirumab (brand name Cyramza®) targeted for stage 4 cancer patients. It works similarly to Erbitux but with different side effects. Ah, a potential option if I need it. Thank you God. I felt myself exhale.

Then, I went into Dana-Farber for a port flush. (They need to periodically access the port in my chest and flush it with saline to keep it clear and useful.)

I signed in and the woman behind the counter gave me the plastic bracelet with my name, birthdate, and medical ID number. I hate that bracelet and all that it stands for. The port flush went well and, immediately afterwards, I walked through the waiting room, straight to the trash can, and pulled the plastic bracelet off my wrist.

As I held it over the trash can, a woman stopped and said to me, “You might not….”

Immediately defensive thoughts went flying through my mind, such as, Don’t tell me that I might not want to throw this away. Don’t tell me that I might need this for discounted parking. I just want to be rid of this thing…

Thankfully, she couldn’t hear my thoughts, so she continued on, uninterrupted (as far as she knew), “…remember me. I did a talk at your house….”

OH MY GOSH. It was LIZ! I just LOVE it when questions are answered. I didn’t know where to start reconnecting with her – there were so many places to begin!

Well, we were both alive, which seems to be everyone’s first question about cancer patients. She looked good and energetic and still had the cynical edge that made me laugh.

She was back on chemo and today was a treatment day. We talked about parenting through treatments and taking care of ourselves and living with one foot on the path of “I will heal” and the other on the path of “What if I don’t.” We talked about Kripalu. We talked about Tong Ren and Tom Tam and, in that crowded waiting room, I lifted my shirt to show her the device he developed that helps me with pain. (You should know that lifting my shirt also exposes my colostomy bag, but that paled against my excitement of seeing her and sharing something that might help. Besides, in that room, people are dealing with issues larger than the horror of glimpsing someone else’s colostomy bag.)

Running into Liz at that place and time was like a Divine Intervention. She told me that she really needed to see me at that moment, and I couldn’t explain how lifted I was to see her. It helped to restore my faith in the connectedness and purpose of the universe. Her presence helped me to feel like God was listening to my questions and would provide the answers if I can just be patient.

We exchanged email addresses again and while I am not sure how we will stay in touch, I know that our hearts are connected enough to bring us together and inspire each other as we move forward.

Thank you for always being there to inspire and support me. I appreciate your prayers as much if not even more during this break, as it can be scary and painful but also, bearable, with your friendship and support.

Blessings and love and miracles,
Mari

In the two years since the Boston Marathon bombings of 2013, we have seen many amazing examples of human resiliency. We have seen the people of Boston rise up and bond together over this shared trauma, with Boston Strong our motto. And we have seen families and individuals move forward with courage in the face of loss. Powerful news media images of amputees learning to walk on their new prostheses are emblazoned in our minds.

Quieter, less visible personal transformations have also occurred in many who were not physically injured by the bombs. Jennifer, a 42 years old woman who has suffered from depression for years and who was volunteering at the Boston Marathon Finish Line in 2013, describes the events of that day as “a turning point” in her life.

In Jennifer’s words, “Since the marathon, everyday is a gift.” She realizes how lucky she is to have walked away that day without any injuries, alive. Moreover, the events of that day, which for Jennifer included helping a runner reunite with his family in the aftermath of the explosions, changed her life goals. She now feels it is her responsibility to do something to help others and is committed to finding concrete ways to do so.

In what Jennifer describes as “an amazing coincidence”, she was signed up to participate in a Relaxation Response program at the Henry-Benson Institute of Mind-Body Medicine at Massachusetts General Hospital the week following the marathon bombings. Primed by her marathon experience, she devoured what the course had to offer. The teachings not only deepened her sense of self-acceptance and gave her skills to manage her own depression, but also strengthened her resolve to help others, and she ultimately went on to become a peer counselor for subsequent groups.

The central message she came away with is that while we cannot necessarily control what happens to us in life, we can control the meaning we make out of our experiences. She is determined to make the events of April 15, 2013 mean something, and to translate this meaning into action. As far as her depression is concerned, she has come around to recognizing “some of the good things about depression”, namely her appreciation for the small things in life, and her increased sense of empathy for others. “It’s like any other illness”, she says. “It doesn’t have to limit you. It’s all about making it mean something.”

I have so much to be thankful for. I should NOT feel so horrible. But, I did feel horrible. Lost. Lonely. Exhausted. Often. I was a sophomore in college. 18 years old.

I had spent several nights crying, not knowing how to get rid of the dull ache I felt inside of me. Now I was on my way to an intake session at the University Counseling Center, at the suggestion of my best friend. I had tried my best to hide my sadness, but having struggled herself, she saw right through me. I skipped my history class to make this appointment, trading time in a class I enjoyed for an hour that was one of the scariest of my young life. I sat in the corner of a slightly dim room with a box of Kleenex in one hand, sobbing and spilling out my inner emotions to a woman I had never met. After 45 minutes of listening, she suggested regular counseling. An appointment was made for the next day.

I was so terrified that I almost called it off, but I knew I had to be brave, so I showed up the next day and weekly thereafter. It seemed to be helping, but then, after the third week of counseling, one of my closest friends seemed to turn on me without explaining why. He just shut me out. Suddenly. I was mad, confused, and hurt, not sure if I wanted to go on. I cried so much in therapy that afternoon—all I felt was despair. I could only imagine that he stopped being my friend because I was so messed up. Too much of a burden.

I was still the nerdy bookworm I had been in high school, but being at the university had opened my mind to new ideas, people, music, art, and lifestyles. It was exciting but at times overwhelming. I was a perfectionist, not satisfied with any grade lower than an A. As an Honors Program student, I was constantly surrounded by overachievers like me. By the time I entered counseling, I had pushed myself harder academically and emotionally than ever, so hard that I bottomed out. Nothing I did felt good enough. Slowly, over months, my counselor helped me to see and appreciate who I was becoming. Things would be OK, I thought.

Things were OK, at least for the rest of my undergrad years, but anxiety and depression were never too far away. I went on to grad school, still never feeling good enough. As the first in my family to graduate from college and pursue an advanced degree, I constantly compared myself to fellow students who went to better schools and came from families with more wealth and status. I was afraid I would be “found out” as the fraud I assumed I was. Every night, as I tried to go to sleep, my mind would swirl with thoughts of all the things I could have done differently, better, often reliving mistakes made years earlier. I often wished that I would fall asleep and never wake up.

There was also a lot of good happening in my life during graduate school. I fell in love and got married. I had a job that I enjoyed. But still, even when things were going well, I knew that eventually, depression would find me. It felt inevitable.

I was in my late 20s when I first discussed my depression with my primary care physician, and she suggested I try an antidepressant. In my mind, this marked for me the moment of my “official” diagnosis of depression, even though the feelings had been longstanding. Now that I had been labeled with major depression, I had the comfort of a diagnosis and potential treatment, but also a fear that I was now associated with a condition that carried a great deal of stigma. How was this stuff going to change me? Could it really work? Would I need it for the rest of my life? Did needing antidepressants to function mean that I was too weak to deal with problems on my own?

The first two weeks on Wellbutrin were difficult. I felt like someone had turned up the volume in my brain. I had trouble sleeping. Every so often I involuntarily twitched. I was afraid to tell the doctor. What if she took me off of the meds and I lost this opportunity to maybe get better?

And then, about two weeks later, the buzzing in my head stopped. One morning I woke up and everything felt “even,” as I came to describe it. The internal criticism stopped. I could fall asleep and started sleeping a little more soundly. It felt like a miracle.

I finished my Ph.D. two weeks before my thirty-second birthday. Before I knew it, I had been offered what I long described as my dream job, and my husband and I moved to Boston. Everything about every day was new and exciting. I was happier than I thought I had any right to be. I was gliding.

But not for long. Depression continued to haunt me as I spent time in and out of therapy, on and off medications, feeling okay and not okay. My last serious relapse in 2011-2012 was the scariest. I would often cry riding the train to work, wiping the tears from my face, trying not to call attention to myself. When I couldn’t take the pain any longer, I started therapy again, got my meds changed, and again, began to work toward feeling more even-keeled, but it took much longer this time. Sometimes I just wanted to disappear from the earth. I came home one night, curled into a ball on the ceramic tile of my bathroom and behind that closed door shaking and sobbing as quietly as I could so that I would not scare my husband.

Although I was generally quite open about talking to my family members about my depression, more often I felt the need to hide my pain. They did their best to support me and I did not blame them if at times they felt helpless. At the same time, I felt guilty for causing them to worry, broken because I could not seem to get better, and exhausted from living in a world I felt was filled with more pain than I could bear.

In early 2013, I decided I needed to find a new approach to managing my recurring depression. Although my symptoms had subsided thanks to regular therapy and medication, I feared another relapse, and I didn’t want more or different medications. Before moving to New England, I had a regular tai chi practice and was experimenting with mindfulness and meditation, both of which had helped me deal with the stress that tended to trigger depressive episodes. My search for similar experiences and training led me to the Benson Henry Institute for Mind Body Medicine. I signed up for an eight-week session to learn the Relaxation Response that would begin on April 16, 2013.

The day before the program was scheduled to start was a sunny Patriot’s Day morning. I arrived in Boston at the time I would normally have arrived for work, but instead made my way to my volunteer assignment for the Boston Marathon. I had been volunteering at the race since my first year in Boston. As a recreational runner myself, it is a great way to support the running community, and something I am always honored to be part of. This year I would be working at the first water stop after the finish line.

I was ready for a long day on my feet, first turning the caps on the water bottles to make them easier for the runners to open, and then handing them out with a smile and congratulations as runners moved through the stretch along Boylston Street after finishing. I was surprised at how physically beat up many of them looked--some encrusted with sweat or bleeding in spots where they had been chaffed by clothing. Faces winced as legs hobbled slowly forward, a situation I could relate to only too clearly, having finished the Chicago Marathon about six months before. Some runners were in better shape and had the smiles I expected to see. Just being there to help these runners was a very emotional experience for me as I shared with them all the joy and pain of finishing 26.2 miles.

Hours passed. I watched the numbers on the runners’ bibs get higher, indicating that we were getting deeper into the field of over 25,000 participants. My feet and lower back started to hurt from prolonged standing. I remember looking at a clock on a Boylston Street building that read 2:00 pm. My anticipated check out time was still 4 hours away.

At 2:50 pm, as I was looking down Boylston Street toward the finish, I heard an explosion, followed by a plume of smoke, then another explosion. Fireworks, I wondered? The runners continued down the stretch and because I was so used to seeing battered bodies, I could not tell from their faces what had happened. And I was afraid to ask. Then I saw a female runner coming toward us with a look of horror on her face. Soon, the emergency vehicles began screaming down Boylston Street toward the finish, an area that was now a cloud of smoke and blinking lights from emergency vehicles.

In a world where news and information are available almost immediately, there was a void—no one knew what was going on. Speculations and rumors spread. Then, one of the first responders asked us to clear the area. They were looking for a third unexploded bomb. All I remember is a sense of unreality as the scene unfolded around me. I wanted to help but was afraid to help at the same time. No one knew where to go but someone told us to go to the Fairmount Copley Hotel, located on the other side of the Square.

I cut through Copley Square, running behind the big white medical tent to the corner across from Huntington Avenue. The hotel was in lock-down. Emergency personnel was pushing people on stretchers toward waiting ambulances. At 3:20, the first of many text messages started arriving from friends and family, those near and far. Where was I? Was I OK?

A volunteer wearing one of the white jackets designating her as medical staff approached me with a man in a wheelchair, a thin but very fit middle-aged man, with sandy brown hair and a beard. Michael. He was shivering in his thin runner’s singlet and shorts and was desperate to get his gear bag back, which contained warm clothes. The medical staff had been treating him for stress fractures after he crossed the finish line. He did not have a phone – could one of us text his wife to let her know where he was and that he was OK? Then Michael and I were alone. I sent the text “I am with Michael – he is OK – are you OK?” I still don’t know if that message ever made it to her.

I’m not sure how long we waited at that corner across from the medical tent but at some point, I decided I needed to do something, to take action and make sure that Michael reconnected with his family. I decided to wheel him to the family meeting area and try to find his gear bag so he would have some warm clothes and his cell phone.

For such a lean runner, he was much harder to push than I expected. As we came to the end of the block, there was a rough spot in the curb cut. I hit it with a thud, knocking Michael forward and practically out of the chair. He reacted with an expression of pain. Until then I had managed to keep my emotions in check, for the most part, but now I started to cry and my hands began to shake. “I am so sorry,” I told him, and I was. All of a sudden, I realized where I was, what had happened, and what I was doing ...

Now Michael comforted me. I needed to take my mind off of what was immediately happening, so I asked Michael to describe his wife to me. “She has brown hair. She’s beautiful, and she should be wearing a brown coat,” he said. We got to the family meeting area but she was not there. My heart sank. I told Michael I would not leave him until he was back with his family.

In the meantime, I would retrieve his gear bag. Amazingly, not only did I find the school bus that had brought his bag back to Boston but the volunteers actually gave it to me to take to him. I returned to the meeting area and was overjoyed to find Michael’s wife standing next to him. When he saw me carrying his bag, Michael exclaimed, “My angel!” His wife and I needed no words of greeting as we reached out to one another to hug, sobbing with relief, for what seemed like a long time.

When I was certain that there was no more I could do to help Michael and his wife, we said goodbye.

I wandered from Back Bay to my office on Cambridge Street in a state of shock, stopping regularly to respond to a steady flow of text messages coming from friends, family, and coworkers. As I opened the door at my workplace and saw one of my coworkers at reception, I let out a series of sobs that shook me to the core. Everyone who was in the building at the time came down to the lobby to see me, hug me. I called my husband. My supervisor drove me home. All I could do was crawl into bed.

Not surprisingly, the Benson Henry program did not start the next day as scheduled. There was too much uncertainty about travel in the city. The people responsible for the bombing were still at large. By the time the program started, one week later, I had spent seven days feeling completely numb, going through the motions of life. I can hardly remember it. But I still remember the first guided meditation in the program clearly, a body scan, and how good it felt to finally find some brief moments of peace in my own body. The next seven weeks brought more meditation experiences, opportunities to share the impact of these practices with the group and to listen to the stories of others who had sought this program for a whole variety of reasons. The most valuable part of the program for me was learning to recognize cognitive distortion and negative automatic thoughts and to reframe them in positive and constructive ways. The many years of “should,” statements, all-or-nothing thinking, perfectionism, and other unproductive ways of thinking, slowly dissipated.

I was extremely sad when the program ended, so I was thrilled when the group leader asked if I would consider helping the next group as a peer counselor. Participating in the program again, in a different role, was perhaps even more enlightening for me. Now that I wasn’t focusing as much on myself, I was able to see how profoundly these practices impacted others. In addition to learning how to meditate, I was also motivated to restart my tai chi practice, and eventually, pursue a teacher training program at a local studio.

My relationship with depression began to change. As part of the Benson Henry program, we talked often about gratitude and making meaning. I had always been careful not to take things for granted, but after the Marathon Bombing, every day felt like a gift. I had walked away from the scene with my life and my limbs when others were not so fortunate. I was determined to find some way to bring some good out of this tragic event. If that day was going to change my life, it was going to change it in the very best way possible.

For the first time in my life, depression was not a hurdle to overcome, but part of me that I needed to accept, for better or worse. By acknowledging it and realizing how much the associated pain contributed to my capacity for kindness and empathy, I have been able to better cope with the occasional “funks,” none of which have escalated into the relapses I previously experienced. Feeling gratitude is key to helping me understand and accept depression as part of what makes me the unique person that I am.

I began longing for new and meaningful challenges, opportunities to further explore and understand my own health and wellbeing, and the chance to improve the lives of others.

I had a nearly 20-year career as a historian behind me and was our household’s primary wage earner. The decision to go back to school to study nutrition and public health was both the easiest and most difficult decision I have ever made. But I had to do something.

I often thought about Michael. At first, I had been so afraid to take charge of the situation, but I did. I met that fear and it changed me. I made a difference. I could do it again.

In May I will graduate from Tufts University with a dual degree in nutrition communication and public health. I have been befriended and supported by a community of scholars and researchers who have given me extraordinary opportunities to learn and grow. I am excited to see what comes next. I am truly blessed.

I have SO much to be thankful for. And I feel wonderful.

Originally published on WBUR CommonHealth Blog, April 20, 2015

Resources:

http://www.nimh.nih.gov/health/topics/depression/index.shtml

http://www.mayoclinic.org/diseases-conditions/depression/basics/definition/con-20032977

http://www.aacap.org/AACAP/Families_and_Youth/Resource_Centers/Depression_Resource_Center/Home.aspx

Gastroparesis is an "invisible disease", which means that no one knows that I am sick by just looking at me. They make comments about how great I look after losing so much weight. They don't understand when I tell them thanks for the compliment, but I lost all of my weight from not being able to eat anything and would rather be heavier than feel the way I do.

My Gastroparesis Story

My name is Trisha and I am sharing my personal story to give you an inside look at what it's like living with this awful and misunderstood disease. I have had GI-related issues and numerous sporadic episodes of being unable to eat due to pain and nausea/vomiting for many years, but none of the episodes has been anywhere close to being as severe or long-lasting as the issue I have now.

In early February of 2013, I became sick with what we thought was a common stomach bug. I was unable to eat or receive an adequate amount of fluids orally, due to severe abdominal pain, nausea, and vomiting. As I progressively got weaker and the symptoms increased, my doctor diagnosed me with possible diverticulitis. After a few trips to the ER, with little help and no real improvement, my family and I knew that this was not a stomach bug, so I decided to see a gastroenterologist for my issues.

My gastroenterologist ran a number of imaging tests, but could not find anything that would be causing my inability to intake any nutrition without pain, nausea, lack of appetite, and vomiting. After a couple of months went by and I continued to get weaker and lose weight, I was referred to a urologist and a gynecologist. Neither could come up with a reasonable diagnosis to explain my symptoms. I was referred to a surgeon for a diagnostic laparoscopy. I never made it to that appointment because my husband had had enough of me going from doctor to doctor with no results. I was not improving. Months had passed, and I was still unable to eat, vomiting or dry-heaving when anything went in my mouth, and in lots of pain.

So one morning, my husband drove me to UNC, where I was admitted for testing. I went home the following week on a liquids-only diet. I was unable to drink an adequate amount of fluids following hospital discharge and I became dehydrated. In addition, I was facing awful side effects from Reglan, the medication the doctors had put me on. I returned to UNC and was once again hospitalized.

I had to receive nutrition, and it was clear that I would not be getting it orally. In May 2013, I had to resort to having a GJ feeding tube placed in my small intestine, which I still have today. I have a machine that pumps formula into my body for at least 15 hours a day. I have to wear a backpack carrying this formula all day. At first, it was hard to accept, but my faith helped me gain peace, and I became comfortable with wearing the bag in public. (I admit a more comfortable and stylish bag did help some as well.) I have continued to have rough days but have been able to function "normally" on most days. Nevertheless, the past 6 months have been extremely difficult for me physically and emotionally, as my body has begun having trouble with tolerating enough calories via the tube. Surviving on less than 500 calories a day doesn't give me much energy at all.

I am a 5th grade Science/Social Studies teacher. I love teaching with a passion, and this year is my 15th year as an elementary teacher. However, due to illness and other hospitalizations, I have been unable to work. At first, I was angry and upset. I honestly thought that I was fulfilling my purpose by being a teacher and loving mother, so why was my body keeping me from being in the classroom? I questioned God's reasons for making me endure the pain and suffering of this debilitating disease. I honestly try my best to live my life with as much love, understanding, and patience as I can. With prayers and contemplation, I have come to believe there is another purpose for my life; at least I hope that's what it is.

Some doctors have me diagnosed as having “Gastroparesis” which means a “paralyzed stomach.”  I have learned that the majority of the public and even medical providers/physicians are not aware of this debilitating disease. Some doctors label me as having a “Functional GI Motility Disorder.” Regardless of the label, my life has drastically changed. Since my diagnosis, I have seen multiple doctors/nurses. I have had many return visits to the ER for dehydration, uncontrollable pain and nausea, and feeding tube issues. Every 3 months I have to return to Interventional Radiology and have my feeding tube replaced, sometimes even sooner if it clogs or falls out. I was an active parent, wife, daughter, and teacher before my illness. I was overweight, but otherwise healthy and felt great. Since getting sick, I have lost approximately 160 pounds, and on most days, especially recently, feel too awful to be active. My quality of life has diminished, but I will continue to fight to get it back.

At first, I felt strong and brave, thinking I could live my life the same as always.  I would just have a different way of receiving my nutrition. Instead of eating, I would tube feed. To begin with, I tried feeding at night so that I could feel and look "normal" during the day. But I was not "normal" anymore. I was struggling to get through my day at work, just to come home and crash with my family. I gave up trying to hide my illness, and decided to begin wearing my backpack during the day to run my feeds in hopes that my energy would improve. I wear my backpack all day, regardless of whether I am working, grocery shopping, or going to a doctor's visit.

Although I love my teaching career, I am currently on medical leave because my body cannot keep up with my physical demands. I am praying to regain my strength and get my symptoms under control so I can return to teaching soon, as I miss it greatly. I was hospitalized this past October (2014) for almost 2 weeks because my body couldn’t even handle the formula that I was trying to send through my GJ tube. In December (2014), I had my gallbladder removed, and since then, I have been trying to increase my feeds so I can function and regain my strength. I am currently surviving on less than 700 calories (tube fed) a day.

I despise how this disease makes me feel guilty over missing family events and not being able to attend some of my children’s activities. I hate not being able to easily go out to eat, to sporting events, camping, vacations, or any of the other things I enjoyed prior to my illness. I am young and should have lots of life ahead of me, but instead I am struggling to find a cure or treatment that can allow me to actively live again. It's hard to fathom that there is not a cure for gastroparesis/FGIMD and that I may have to deal with feeling like this for the remainder of my life.

Gastroparesis is an "invisible disease", which means that no one knows that I am sick by just looking at me. They make comments about how great I look after losing so much weight. They don't understand when I tell them thanks for the compliment, but I lost all of my weight from not being able to eat anything and would rather be heavier than feel the way I do.

I am angry at times. My insurance will not cover my formula that is required for me to survive and puts hurdles in my way before covering certain treatment options. Sometimes when I see a new doctor or nurse, I have to TEACH THEM what is wrong with me, what kind of medications I need that work, and which medications I have to stay away from. I am heartbroken when I make some exciting plans with the family, but then I have to cancel because of being sick. I want MY LIFE back!

I have been blessed, though, with receiving help and support from those around me. I am fortunate to have found a wonderful gastroenterologist who actually listens, seems to genuinely care, and attempts to help me manage my symptoms. Additionally, I am appreciative of the support I receive from my ever-growing GP community.

I am a firm believer that everything happens for a reason. I have faith. Through this storm, a wonderful bond was formed with two of my fellow GP warriors. We are using social media and our advocacy group to create web pages, community pages, Twitter movements, gastroparesis-related events, letter writing campaigns to elected officials, the media, and medical providers.  We are writing and distributing petitions, making awareness videos, creating fundraisers, and participating in all sorts of other activities to support the GP community. We have formed a magnificent team. I have come to realize and accept that God has set forth this path for me. I HATE GASTROPARESIS!  It has been a thorn in my side, but I am finding my way.

It is really scary having a disease that even medical providers do not know exists.

A Day in the Life with GP

It is 1:30 in the morning.  The monster that dwells within my stomach wakes me from another nightmare.  As I sit up, the intense nausea practically brings me to my knees. I am dry heaving. Some people compare this to having the flu.  In my experience, gastroparesis (GP) makes having the flu look like a walk in the park. What I am going through is worse than any hangover I have ever had or the time I got food poisoning. I take a Zofran for the nausea, and I relocate to the recliner so I can sit up.

The minutes seem like hours. Time passes by so slowly. It is now 4:30 a.m. I have been sitting in the chair unable to go back to sleep. I am having anxiety. The stress this sickness causes is indescribable. I am also very depressed. At times I have thought about suicide, but so far I have not acted on those thoughts. When I am in a flare (that is when my symptoms are worse than usual,) I become very scared and confused. My mother calls it crossing over to the dark side. My thinking is negative and irrational. I want to die. The psychological aspects of this disease are almost as bad as the physical, and they do feed off each other. Even though I see a therapist and take an antidepressant, my mind has turned into my own worst enemy thanks to GP. Whenever I can sleep, GP haunts me in my dreams. I never really can escape.  It is relentless, and I suffer 24/7/365.

It’s around 5:30 a.m., and the worst part of the sickness is starting to pass. As my old Dell Desktop is booting up, I have to go to the bathroom. I praise God the laxatives have worked. When I first got sick I suffered from chronic diarrhea.  It was so bad I spent a good portion of my time on the pot. I have had my share of accidents in the bed and in my pants. That has to be one of the most demeaning feelings I have ever experienced in my life. I don’t have to worry about that anymore, though, because with all the medications I take, I now suffer from the opposite problem. Sometimes I go for days without going. When I finally do have a bowel movement, it is extremely painful. I am usually impacted and the feces must be digitally removed, which makes me bleed from my rectum. That entire experience is physically and emotionally brutal. Who knew a simple bodily function could be such a traumatic ordeal?

It just took everything I had in me to feed my cats. I feel bad for my pets. I can hardly care for them anymore. My mother usually has to remind me to feed them. I never talk to them or play with them nowadays. I just don’t feel well enough to participate in those types of activities anymore. Those are the kind of things I used to love. GP has truly touched every area of my life.

I am weak and shaking. I can hardly think straight as I sit down at my computer. I am so cold. For some reason I am always so cold. I turn on the heating pad and pile the blankets up over me. I live in Arizona, where it is over seventy degrees outside right now, and I am still freezing! I can’t even begin to imagine living in a cold weather climate with a diagnosis of GP.

Shivering, I log onto Facebook. Last April I took a turn for the worse and ended up with a flare that lasted months. I was so sick I could not leave the house. All I could do was sit at the computer. I ended up meeting other people online just like me, who also suffer from GP. That is one of the only good things I have gotten from this horrid disease. I have made many great friends that mean the world to me, even though I have never met them personally.  I also found many support groups where these same people shared their experience, strength, and hope with me. I have read GP only affects about 5 million people, and the medical community does not know much about it. In fact, the ER staff had to Google search “gastroparesis” upon my last admit. They had never heard of it. Neither had I before I got the diagnosis. It is really scary having a disease that even medical providers do not know exists. My regular GI doctor has only had three people in his entire career with GP. His other two patients are diabetic. I am the only person he has ever treated who is “idiopathic” (which means they do not know what caused the GP).  So, the GP community on Facebook has taught me more about this disease than any doctor has – and more than what I have been able to read about on the Internet.

Facebook is also how I socialize.  Since I am always sick, many of my “friends” no longer have anything to do with me. It is hard to make plans to go out when I never know how I am going to feel. Half the time I end up having to cancel.  I have all but given up hope of ever finding a potential mate who will accept me being sick. I have no sex life at all. I am so very lonely.

However, I am fortunate to have my family by my side. I had to go home to live at my parents’ house about a year ago because my symptoms became so bad I could no longer work. I ended up losing my apartment and everything in it. I filed for disability and got denied. I have appealed that decision. Who knows how long it will take before I am approved? In the meantime, I am flat broke, and I am on public assistance. Twice in the last few months they have told me my medical insurance has been cut off.  Both times were apparent mistakes, but do you know how upsetting that was? I have never been so afraid in my life. I really wish I could work and be self-supporting; relying on the government is really unreliable.

Okay, I have taken my morning meds, and I ate breakfast.  My breakfast is the same every day: one Activia yogurt. Since I got diagnosed, I have been on the GP friendly diet. I can no longer eat the things I love. The diet is very restrictive. Following the diet has helped decrease the violent vomiting, but I have developed a fear of food. To be honest, I only have about 10 different “safe foods.” Since I am always sick, I don’t really consider them “safe foods.” At any rate, I am terrified of eating anything new or different outside of those 10 things. I have lost a little over 80 pounds since I have been diagnosed with GP. I do not go out to eat at restaurants anymore. When I first got sick, just looking at all the food on the menu and seeing what the other customers were eating was more than I could take. The smells of all of that food made me even more nauseated. I hate getting sick in public so I just don’t dine out. Even watching television is rough. All those commercials with all that yummy food I can’t have really messes with me sometimes.

Then there are the holidays! I usually become very depressed during what is supposed to be a happy time. In America, our holidays are all centered on food. Hell, I can’t even have cake on my birthday anymore. The last time I did that, I wound up in the emergency room. It is really tough, but at least I can still eat. Many people with GP rely on tube feeds and TPN for their nutrition. I struggle with maintaining my weight, malnutrition, and dehydration on a continual basis.

It is now about 9:00 in the morning. My 70 year old caregiver is awake. My mom has become my caregiver. It makes me feel so bad knowing that I should be the one taking care of her. I also wonder what will happen to me when something happens to her. Right now, I do not have the finances or physical and mental well-being to take care of myself. My future does not look too bright, does it?  In the meantime, watching me get sicker and sicker is killing my family.  My four year old grandson does not understand why I can’t play with him for more than a few minutes at a time. That kills me.

Now it is time to get dressed. I mostly wear baggy sweat pants as I can’t stand to have anything restrictive around my tummy.  It takes all of my energy to stand in the shower. I did not shave my legs all winter long. I only wear makeup on special occasions, which is pretty much never anymore. I have not had my hair done in about two years. I was a real girly-girl before I got sick. I was never without hair and makeup. I always wore a dress and high heels. GP has robbed me of my femininity, my sexuality, and my self esteem.

From about 3:00 in the afternoon until I go to bed is usually the best time of day for me. On a good day, I will usually try to do something around the house. It has become increasingly challenging to clean and do my laundry. This is also the time of day when I try to arrange my doctor’s appointments. I am too sick to go in mornings. Can you imagine being too sick to go to the doctor? Can you imagine the doctor’s office being the only place you ever really go?

Now it is dinner time. Just recently, I had to go to liquids only for dinner. It is so hard to watch everyone else eat a burger and fries while I get broth or a nutritional shake. After dinner I try to walk around the block. Remember, I have little energy, but I do believe this little bit of activity helps with motility. I watch television for the remainder of my day.

It is now about 8:00 in the evening. I take my laxative and hope for gentle overnight relief. I fill up my pill cups for the next day. I take so many different medications now that I have to place them in cups, so I can keep track of whether I have taken them or not. I have forgotten to take them, or have taken too many on occasion, and this has led to problems.

There are very few medications available to treat GP. When I first got diagnosed, I was on Reglan. That medicine has a black box warning. I started having side effects that are now permanent. Now I take Domperidone.  It also has serious potential side effects, and I have to get regular EKGs.  Dom is not approved for use in the United States. I have to order it online from Canada. It takes about ten to thirty days to receive. One of my biggest fears is that I will not receive my medication on time. I get very sick within a day of not taking the medication. I also fear the day it stops working.

Currently, I am seeing a motility specialist at Mayo Clinic. There are not many treatment options available for me. I am going to start alternative therapies. I see a chiropractor next week and I hope to see an acupuncturist and Chinese herbal medicine doctor in the near future. I am also going to be checking into Botox injections and a Medtronic stimulator. As I mentioned, I have no money, and I do not think my insurance will cover those procedures, but I am still going to look into it. At this point, I am desperate to feel better, and I am willing to try just about anything.

I go to bed at around 9:00 p.m. This is when I pray. My faith in God is what gets me through the hell I endure every day. So, I hope and pray for a good night’s rest without nightmares.  Then the monster that dwells within wakes me about one o’clock in the morning to rear its ugly head again…

We need to continuously pressure the powers that be to conduct more research to help find a cure for this devastating illness. So many of us have suffered, been told we are crazy, and been told we are addicts because of our need for pain medicine. We are labeled drug seekers at our hospitals and are denied proper treatment as a result. I fear that if something is not done to raise awareness about gastroparesis, the number of people who perish as a result of this horrible disease will only continue to grow.

Hi, I am Regina. I am 50 years old. My story begins January 28, 2008, with a middle of the night trip to the emergency room for uncontrollable abdominal pain and vomiting. Let me first say that prior to this date, I was a pretty healthy woman, working two jobs and traveling a lot for work. On this dreadful night in 2008, I was so sick I had to go to the ER. I had no idea what was going on, but they ran some tests and said my gallbladder was filled with stones and sludge and therefore had to be removed. I arrived at the ER at 4:30 a.m. and was in surgery by 9:00 a.m. I awoke in recovery in severe pain and figured this was normal post-surgery pain. But the pain continued, even after receiving pain medications.

By day two, I was vomiting again and could not stop. I could not eat or drink. By day five, they had me somewhat under control and discharged me with paperwork describing a diet to follow after gallbladder removal. The next few months consisted of weekly trips to the ER for pain and vomiting, as well as several more hospitalizations and tests in an effort to figure out why I was still in this condition. By May, I was unable to work consistently and decided to go on short-term disability until they could find a way to cure this problem.

Then a gastroenterologist at the local hospital suggested that perhaps I see another gastroenterologist at UPENN or Temple University, as he thought that perhaps I could have gastroparesis as a result of the surgery. I did my research (as I worked in the healthcare field as a Fraud Investigator for a major insurance company), and determined that the best place to go would be Temple, as they had a section of the GI department which was dedicated to gastroparesis. I made an appointment to see the head gastroenterologist there, Dr. Parkman, but before I could get to that appointment, I was hospitalized again locally. Eventually, I was transferred to Temple. They kept me in Temple for almost a month, running every test I had never heard of, and by the end of that hospitalization, they told me I had severe gastroparesis.  My Gastric Emptying Study showed 96% retention after four hours. In August of that year, I had surgery for a Gastric Stimulator.

The stimulator helped me only a little. I continued to have repeated hospitalizations over the next few years, and my condition only worsened. By Feb 2011, I had gone from a physically active, 165 pound, athletic woman to a 90 pound version of who I used to be. During one hospitalization, they refused to discharge me until I agreed to let them insert a g-tube and a j-tube so that they could put me on tube feedings and keep me from becoming malnourished and losing more weight. I now weigh about 120 pounds, but I continue to suffer from near constant abdominal pain and intractable vomiting. I am still hospitalized multiple times a year and have had several different types of procedures and surgeries, including Botox injections.

To this day, I am nowhere close to the normal woman I used to be. She is long gone. I am now a weak, somewhat feeble woman who often needs to use a wheelchair to get around, as I sometimes do not even have the strength to walk around my apartment. They say that there are no more answers for me at this point in time and I just need to accept my condition. I am fifty years old, and I am limited as to what I can do. I am restricted to a full liquid diet, and every time I eat, I end up in the ER within hours or days. I cannot be around sick people at all, or I will get sicker than sick, and inevitably, I end up with an infection ten times worse than what I was exposed to. I have had multiple instances of MRSA and other staph infections that have put me in the hospital, and even nursing homes, for months at a time.

We need to continuously pressure the powers that be to conduct more research to help find a cure for this devastating illness. So many of us have suffered, been told we are crazy, and been told we are addicts because of our need for pain medicine. We are labeled drug seekers at our hospitals and are denied proper treatment as a result. I fear that if something is not done to raise awareness about gastroparesis, the number of people who perish as a result of this horrible disease will only continue to grow.

Despite the difficulties associated with my gastroparesis, there are several things I have learned about myself and about my life since my diagnosis. I was always a very career oriented person and my job was my life. I loved the travel that came with the job, and after being diagnosed, I did not know how to define myself as a disabled, non-working person. But what I learned over time is that my job did not define me and neither does my illness. I may not be able to help others in the same manner I did while working, but by being a part of the support groups I am in, I am now able to help others in a different way. I believe that my God uses me to help others through my life experience. I can help people who are newly diagnosed by assuring them that gastroparesis is not a death sentence; rather, it is another obstacle that I can overcome and that teaches me I am stronger than what life throws at me. I have made several wonderful friendships with men and women from all over the globe. And though I have never met these people, we help each other tremendously on a daily basis. We band together to try to create awareness and change for the way the medical world handles our illness. There is still so much to learn about gastroparesis, and if I can be even one single voice that is heard in the world of this devastating illness, then I can turn the negative into a positive and perhaps help others who are diagnosed in the future.

I consider it my purpose in life to make a difference and fight for every second of feeling well. I will promote awareness and try to help others get to a decent place in their lives until I can't do it anymore.

Hi, my name is Laura and I have gastroparesis. I have had type 1 diabetes for 36 years. My gastroparesis was caused from my diabetes. Like most folks with gastroparesis, I did not recognize the early symptoms for years. In April of 2001, I was taken to the hospital with fears of a heart attack due to the incredible pain coming from my chest. They found nothing and it seemed to go away on its own. About a week later, I started having nausea and vomiting 24/7.  One doctor did an endoscopy and had to literally scoop the food out of my stomach for an hour and ended up cauterizing 20 small stomach ulcers. The next two years were nothing short of hell. My doctors had no idea what was going on.  I had hospitalization after hospitalization, test after test after test. I also had my gallbladder out.

During this time, I lost 60 percent of my body weight and was not doing well at all. Luckily for me, my PCP went looking through medical websites for doctors to see if he could find out anything for me. To my absolutely miraculous luck, he found a doctor in Kansas City, Kansas, who was doing an FDA study on the Entera Neurostimulator for gastroparesis. His article, written about diabetic people with gastroparesis, could have been written about me. My doctor printed it out for me, and we talked about it.  He spoke to my local gastroenterologist and a week later I was off to Kansas to be part of an FDA study for the stimulator. I had the implant done, all the testing, and six monthly visits from Massachusetts to Kansas.  Although it helped with the incredibly strong nausea, it only did a so-so job overall. I was also given a J tube, which actually saved my life. I was now able to get medication into my system, bypassing my stomach, so that it would actually help me. I spent the next 7-8 years with both good and bad days, and at least 10 to 15 hospitalizations every year.

In 2012, I went to a local doctor who monitored my stimulator, as the batteries were getting ready to die. Unfortunately, it's not as simple as changing a battery; you have to have an entirely new device implanted. I had the surgery in December of 2012 and did not get sick again until Thanksgiving of the same year. I've had my stimulator turned up in intensity in hopes of keeping the nausea at bay. It has done a very good job, all things considered, and I can proudly say that I have not been hospitalized since the new one was implanted in 2012. I still experience frequent pain and bloating, but I can cope with these symptoms.  The 24/7 nausea and vomiting was what was killing me.

When I was out in Kansas, one of my doctors gave me a number for a nonprofit gastric motility organization. It turns out it was right here in my home state of Massachusetts. I joined, but nothing really happened for a few years. Then, one day, I accidentally got someone else's newsletter from them and called to let them know they had the address wrong. A conversation began.

I had been struggling since my diagnosis with the fact that I previously had a very good career and a wonderful husband, and now here I was a sick person, with what seemed to be no purpose in life. The motility organization helped me to have a purpose in my life by helping others cope with this disease. I began reading and hearing about other patients who were coming down with gastroparesis, and their stories were just like mine – doctors looked at them like they were crazy because these doctors had never heard of a paralyzed stomach disorder. I am fully disabled, unable to work, and I'm not well most of the time, but I do not let that stop me.  I pushed and pushed as a volunteer, and I am currently a mentor who calls other people with this disease who are looking for a friend, someone to relate to.

Now, after some years of working with the motility organization, I have had a chance to actually see the difference that I have made in some people's lives. This gives me a reason to get up every day and the pleasure of knowing that I have made a difference by putting a smile on someone's face, or relieving someone’s stress when they didn't think that was possible. I now spend all of my good times volunteering and just talking to others with this disease to let them know that they are not alone, and that it is not in their head. This is a horrible disease that currently has limited medication or therapies to help.

There are over 5 million people with gastroparesis in the US, and it is hard to find two people who have gone through the same exact experience.  What helps one person doesn’t necessarily help another, and a medication that helps today might not work tomorrow. Likewise, a food you can eat today might make you vomit and feel bloated tomorrow. It is a constant trial.

This disease has to be one of the hardest to deal with in terms of quality of life. Your whole world needs to change to a “new normal” with new dreams and wants. Between the disease and all the medications, it is hard for me to get up and get going every day. It would be so much easier to curl up under my covers and stay in bed constantly. That's how we all feel. In addition, I have found that almost everyone I have spoken to with any gastric disorder like this has felt abandoned by family and friends. In some cases, lack of understanding causes people to stay away. Now, when I am asked if I will attend activities or functions, my answer is, “Yes, I will be there if the disease lets me.”  Gastroparesis can flare up at any moment. I can be completely fine, feeling wonderful, and in less than 60 seconds, I am trying to find somewhere I can throw up. I have been very lucky to have a husband who really meant “in sickness and in health,” as this hit me 5 days prior to our one-year anniversary. Many husbands would have left by now, because they can't understand this disease or just can't handle it

My diagnosis was a huge surprise to me.  Even being a diabetic, I had never heard of gastroparesis. It is an overwhelmingly hard and complicated disorder that needs more awareness. Gastric motility disorders need to be brought to the forefront of research. I do as much volunteering and helping as I can, but I am only one.  I consider it my purpose in life to make a difference and fight for every second of feeling well. I will promote awareness and try to help others get to a decent place in their lives until I can't do it anymore.

Do not ever be convinced that you can do nothing to help, that you do not matter. To those who are struggling, your efforts to understand, your cheerful words, your helpful attitude, and simply your willingness to contribute and be present, make a difference.

I am going to share some pretty personal information. Not a big deal to some of you, I am sure, but to me, it is huge. I am not the kind of person who does this – or at least I did not used to be. But things have changed for me.

In early February of 2014, I spent a week in the hospital and was eventually diagnosed with gastroparesis (GP). I am guessing most people have never heard of this; I know I had not, prior to being diagnosed. My life changed in ways I could not have imagined – overnight. One day, I was able to eat at buffets, and the next day, I was unable to tolerate all foods and liquids. I was hospitalized with severe pain and vomiting, put through a battery of tests (including one particularly terrible one where they forced a tube down my nose and pumped my stomach). Eventually, I was diagnosed, but was given only a brief explanation of my illness and its treatment and was sent home.

For the next few weeks, I was on a liquids-only diet, and was told that I had to gradually work my way up to soft foods and (eventually) solids. Unfortunately, nothing like that has occurred. I am able to eat some soft foods, in tiny amounts, but it is becoming clear to me that I will likely never again be able to eat “normal” foods in “normal” amounts.

At first, I told myself that I would not let this stupid disease define or control me – it simply WOULD NOT be the center of my life. But as time passed, I began to see how foolish this was. Every single day, every second of every day, I think about food. I see it; I smell it; I cook it and feed it to the other members of my household; but I cannot have it myself. I look in the mirror, and I see a skeleton. I try to eat even small amounts of food, and I am in agony. I am weak and fatigued to levels I did not think were possible. Some mornings, I do not think I have enough energy to get out of bed. I can barely concentrate and function enough to do everyday tasks. And almost every single night, my husband has to help me up the stairs to bed because he is afraid that if he does not, I might fall. My 11-year-old daughter has seen me vomiting, screaming in pain, lying on the floor crying, and on the verge of passing out. At times, it has frightened her so much that she has asked my husband to get me “Life-Alert."

I grieve over the fact that I can no longer travel or get out of the house for much of anything. I grieve over missing family events and not being able to attend my daughter’s activities. I grieve over not being able to go out to eat, or on a picnic, or to a concert. I worry that I will not get to see my daughter graduate, or get married, or have children. I am not on the verge of death today (at least, I don’t think I am), but when I look in the mirror and think about how tired I am, I realize that people like this do not have long life spans – and it bothers me.

I get frustrated because people do not understand how my life is affected by all of this. If you were to see me on the street, you would likely not realize I am sick. I do not look very sick. And because most people are unaware of the effects of GP, they ask me all of the time if I am okay now. I can’t seem to convince them that I am never going to be okay again – not in the way they mean it. I am told that I “just need to eat,” or that if I would only try yogurt, I would be okay. My own doctor (PCP) accused me of being an anorexic and told my husband to “watch me.” Though I know people mean well and are trying their best to help, it still makes me frustrated.

I am angry because I am a control freak, and I do not like being a slave to this disease. I do not like having to rely on others for help. I have screamed at, smacked, and pushed my husband away for simply trying to assist me more times than I can count. I have thrown things (including food) across the room in fits of anger. I have intentionally gone without eating – even though I know I should not – just to “show” this disease who is in control. Crazy, I know! I am angry because I do everything that I am supposed to do – eat the right things, exercise, and ingest the known medications – and I am still sick.

I think about the others who have this disease who are so much worse than I am. There are thousands of posts in my Facebook feed every day from people who have had to go to the ER or back in the hospital for dehydration, pain, or other such conditions. I know so many people now who have feeding tubes or ports for nutrition. I know many who have developed other serious conditions because of the GP. I sometimes look at them and think that this will surely be my future, too, and it scares me. There are times when I am in such agony that I can do nothing but cry – lie on the floor and beg God to just let me die. He does not – and I am so thankful that He ignores those moments.

I mostly have a good attitude about my situation and try to make the best of it. I feel blessed that I have been given so many years with the best husband and daughter anyone could imagine. I am truly thankful for each day I get to spend with them. I do not understand why I have to have this disease, but God does, and I trust Him. What I do understand is that it is somehow important to me to let people know what I go through – what all GP sufferers likely go through. I am sharing these personal details in such a public forum because I think it is important for people to see this disease and to understand what it is like. But I think it is equally important to share how much I have been blessed BECAUSE OF this disease and to let others know how much they matter and how much of a difference they can make.

I first joined a Facebook support group because I wanted to know what treatments and medications others like me had found helpful – but I hated the idea of support groups. I was there for information only; I just knew I did not need anything like support. Not for me! So foolish! You cannot imagine the blessing these online groups have been. I have learned much, for sure, but I have received so much more than information. I have received more support, understanding, and kindness than I ever could have dreamed. I have made friends that I feel I have known for a lifetime. I tell people all of the time that I hate this disease, but I dearly love all the people I have met because of it.

I have received help from family members, friends, and acquaintances beyond measure. My neighbors have cooked meals for my husband and daughter; they have watched my child and my pets; and they have offered to transport me to and from appointments. My family has come to visit me, even though I know it is horribly inconvenient for them – and they have also stayed away when I have asked them to, even though I know they wanted to be here. Honestly, every single person I know has helped me in some way. Some have visited, some have called, some have done chores and tasks, and some have simply cheered me up with their stories. All of this has been more of a blessing than I could have known.

Do not ever be convinced that you can do nothing to help, that you do not matter. To those who are struggling, your efforts to understand, your cheerful words, your helpful attitude, and simply your willingness to contribute and be present, make a difference.

By Annie Robinson

If you were told you only had 8-10 months left to live, how would you spend that time?

Paul Giese was diagnosed with acute myeloid leukemia (A.M.L.) in January 2013, at age 75. He was told he had 8-10 months to live. 22 months later, on November 25, 2014, he shared the story of his remarkable journey beating the odds.

With his devoted wife Lucretia by his side, Paul endured months of chemotherapy, experimental drugs, and the trying search for a bone marrow transplant match. He navigated uncertainty, bore physical deterioration, and tolerated disappointments. He also rejoiced in the connections he shared with others, and truly made the most out of the time he had.

Paul passed away on January 14, 2015.

Resources:

To learn more about A.M.L., visit the Leukemia & Lymphoma Society’s website. They also offer information aboutsupport groups for patients and their families.

The New Yorker published an article on advances in treatment for A.M.L. this past September, 2014.

In Evelyn Berde’s words, “I have always felt that art has the ability to lift us out of one place and take us to another.”

Evelyn is an artist, a teacher, a healer, and a patient herself. Born with congenital scoliosis in 1950, she spent many years in and out of Massachusetts General Hospital (MGH), confined to her bed for months at a time. Her art is informed by her experience living with a “deformity”, as it was referred to in those times, as well as by her childhood growing up in the old “West End” of Boston, a low-income but culturally rich neighborhood close to MGH and the Charles River which was razed in the late 1950s, displacing many residents, and replaced by residential high rises which still stand today.

Evelyn’s childhood was marked by sadness—alcoholism in her family, the loss of her nine year old brother when she was six, not to mention her own medical condition—but it was also full of beauty, love and color. Her artwork portrays this complexity and texture.

Today, she is a wife, mother to two grown children, an art teacher and therapist as well as an extraordinary storyteller. She weaves her life stories into her art with skill and grace, and she reminds us all that we have the power within us to transform our experiences. “It’s all in you”, she says. “It’s hard to do, and it takes energy, but if you can focus on something that will bring you joy, even in the midst of tremendous sorrow and pain, it can shift everything.” 

You can listen to Evelyn talk about more of her paintings, and view the original publication of this piece on WBUR’s Commonhealth Blog here.

Bradley Lewis - psychiatrist, philosopher, and professor - has spent his career in the classroom and clinic attending to stories of health and illness. Two years ago, Brad’s lifelong inquiry into the crucial dimension of story in illness experience took an unforeseen turn. He entered the medical system as a patient when his eyesight began to fail, gradually but persistently, which led to a diagnosis of cataracts.

As Brad’s eyesight worsened, he grappled with the distinction between being viewed by society as able-bodied or as disabled. When he could no longer see the slides in faculty meetings, or see his students as well in the classroom, or read materials as quickly for committee meetings, he better saw how “unsympathetic the normative world can be” to the loss of functions we often take for granted. “It’s a big deal to have to navigate that.”

Brad trained in psychiatry in the early 1980’s, but felt dissatisfied with the field’s heavy emphasis on biology over biography. At the time, psychiatry was transitioning from a psychoanalytic perspective to a biological one. He recalls feeling “like they both had something valuable to say, but the two messages weren’t integrated at all...it left us to put it together as best we could.” So he started taking classes in the philosophy department to explore the mind/body connection. As he became more involved in the arts, humanities, and cultural studies, he realized that psychiatry was under-emphasizing what really matters to people when they’re going through difficult times: story.

Brad completed his psychiatric training, which he augmented with a Ph.D. in the humanities. He has written and taught extensively on the intersections between medicine and narrative, and believes stories must be prioritized as a crucial dimension of healthcare. Stories are powerful tools that can aid in healing because “stories are beyond right or wrong. They’re metaphorical.”

Soon after receiving his cataracts diagnosis, Brad opted for surgery. This surprised him, for he tends to challenge the common impulse to adopt a highly medicalized approach. In both academic and clinical settings, Brad encourages individuals to ask: “What kinds of alternative ways to telling this story might there be? What languages make sense to you?” He believes “it’s okay if we combine languages - spiritual with biological, for example. There are all kinds of stories that we can bring together to make sense of not only the past, but the future.”

In his own case, the disease model that involved seeking an immediate, surgical solution to the problem felt appropriate to him. However, he still strongly feels that “if someone doesn’t like using disease models and metaphors, that’s fine. There are lots of other models and metaphors. And if someone finds disease models and metaphors helpful, that’s okay, too.”

For clinicians working with their patients, “it’s about meeting the patient where they are, offering them language and support that best serves the healing they have to do.” Although he adopted the disease model language and approach in his own case, Brad still felt at odds with his care providers. “The doctor I finally found really just treated me like a machine. She couldn’t relate to me as a person at all, even though I guess she was one of the best.”

Like so many patients, Brad felt apprehensive entering the medical system “because a lot of people are trying to make a buck out of it. They want to sell you more than you need. And any kind of rating system is hard to make sense of. They are biased towards values that I don’t particularly share. I had to do a lot of work to find someone I thought could have a conversation with me.” And he knows, from his scholarship and clinical practice, how imperative it is for a patient to work with a caregiver who can engage with their situation as a story.

Brad has written extensively about narrative medicine, a field that examines how to be sensitive and attentive to stories in healthcare. He sees story as functioning in multiple ways: “Narrative takes a whole bunch of things that don’t seem to fit together - like our body, our illnesses, our dreams, our childhood, religion and spirituality, culture - and allows us to tell stories that bring all those variables together. Story seems to be central in helping people understand themselves in time and to put their life in perspective with a variety of different variables that are influencing them.”

Brad believes that “the practice of collaboratively telling stories in the clinical setting empowers both people in the room - clinician and patient - to begin to weave those possibilities together in a way that makes sense to them.” But the stories he brought to the providers he met with about his cataracts were not well received.

Near-sighted all of his life, Brad thought he might want to correct for near-vision. When he proposed this idea, it “befuddled” his doctor and the team because it meant he would still need to wear glasses. They shut down his request to explore this possible unfolding of his story, which caused him to once again feel outside the norm and isolated.

“So then I had to get support from friends...people who had personal experience and could help me navigate it and keep me company so I wouldn’t be all by myself with the clinical team that was so sure of itself.” Brad strongly recommends others follow suit by seeking support from alternative sources. “A lot of people who are dealing with the healthcare system need friends with them in the process. Bring comrades who’ve been through it too.”

Ultimately, the surgery was successful, and Brad accrued insights into the patient experience he hadn’t before been able to grasp so intimately. “Your personal experience matters. You’re not just a machine. You have preferences. You have to grieve for different things. You have different values about what you want. Medical decisions are personal decisions, they’re not just medical decisions, not something you can read off a medical protocol. Each person has different angles about what they care about and how they want to approach it.”

More about Brad Lewis:

Bradley Lewis MD, PhD is associate professor at New York University’s Gallatin School of Individualized Study. He has affiliated appointments in the Department of Social and Cultural Analysis and the Department of Psychiatry. Brad writes and teaches at the interface of medicine, psychiatry, humanities, and cultural/disability studies. He is an associate editor for the Journal of Medical Humanities and his recent books are Narrative Psychiatry: How Stories Shape Clinical Practice and Depression: Integrating Science, Culture, and Humanities. His current research is devoted to the ways art, politics, and spirituality impact human flowering.

More about Annie Robinson:

I have experienced the powerful effect stories have in healing as both a patient and as a caregiver in the role of a full-spectrum doula, which involves supporting women through abortion, miscarriage, and fetal loss. As a graduate of the Narrative Medicine master's program at Columbia University, my driving mission in life is to elicit, honor, and attend to stories.

I am the Assistant Director of the Center for Narrative Practice, which provides people with deep critical training in how stories work and trains them to apply this knowledge to everyday life by using narrative practice, creative arts, and the study of story. I also curate an oral narrative project called “Inside Stories: Medical Student Experiences”, for which I interview medical students about their experiences in medical school with the intention to provide a platform for their own person healing, self-realization and empowerment through the sharing and receiving of personal stories.

I am honored to serve as Program Officer for Health Story Collaborative. As such, I conduct interviews, edit audio stories, and write a blog posts that profile remarkable individuals committed to honoring and making use of stories in health care. If you or someone you know might be interested in being interviewed, please contact me at healthstorycollaborative@gmail.com.

Years ago I had a positive experience with a remarkable Nurse Practitioner at UCLA named Sherry Goldman who was in charge of a special program for breast cancer, a disease of which I had. I was struggling with the terrible side effects of my treatments. They were getting the best of my mind, and my body.  When I walked into her office for my appointment, she did the physical examination but she also asked me how I was feeling and remarkably she waited for the answer.  I was open and honest with every detail.  She validated my feelings and made me feel less alone with my thoughts. Her medical suggestion to improve my status was to take walks every day. “Start small, short distances, a block or two and then make it longer with each day”, she suggested.

My response to her was a resounding  “NO!  I don’t want to. I don’t feel well, I don’t look good, and I don’t have the energy.”

Well, the Nurse Practitioner sat quietly for a moment, absorbing my adamant stance and then said to me those magic words, the words that only one could say if they had taken the time to really listen, while having the keen observational skills to sense what the problem was with a simple walk. What were her words? I know you’re waiting for them. Her words were, “ Then don’t walk for you Marla, walk for ME... and I want to hear how much you’ve walked when you come back to see me in two weeks.”

Suddenly my eyes lit up, my back straightened and a fire was in my belly and it wasn’t acid indigestion. That day I went home and started to walk and with each day I walked more and more, longer and further.  Soon, I was walking for hours daily, chomping at the bit to report back to Sherry with pride at my accomplishment. Two weeks later I did just that at my next appointment at UCLA, when I saw her.  I looked like a new person, and I was.

There is a belief that one shouldn’t do things just to please someone else but rather to do it to please oneself. Well, that is all well and good some of the time but there are other times when it’s imperative to break that rule. If pleasing someone else is the key to getting a person back on track and healthy again then so be it and that’s exactly what happened with me.  Not only did my health and strength improve, but I also took up jogging and now I walk and run FOR ME! and I have not stopped since. I’m entering my first 5K Marathon in March.  I have not had that kind of positive experience with the medical profession since, but I will NEVER forget what that incredibly smart and talented Nurse Practitioner did for me. NEVER!

Annie Robinson, a Health Story Collaborative team member and a recent graduate of Columbia University's Narrative Medicine program, curates the podcast "Inside Stories", a forum for medical students to share their stories of medical training. Read about this project here: 

On a warm June afternoon, clustered around picnic tables, cradled in the mountains of the Berkshires in western Massachusetts, eight medical students from around the world began telling one another their stories. They were among approximately 40 students invited to participate in a weeklong intensive program run by AMSA for medical students interested in integrative medicine called LEAPS. As a graduate student of Narrative Medicine at Columbia University, I was asked to help facilitate the program.

Over iced tea and dark chocolate, they spoke of heartbreak and grief and divorce, of exam-stress and isolation and fear. They also shared brilliant visions of innovative approaches to medical care, and their aspirations to foster intimate relationships with their fellow medical students, their families and friends, and their patients. I listened with rapt attention as they described how, from personal struggles, conviction and vision were born for their careers as caregivers. I shivered, on that muggy summer day, knowing I was in the presence of my tribe. 

I was raised to revere the power of storytelling, which has been a critical component in how I have navigated my way through the world. It proved particularly useful when I entered the healthcare system in my early adolescence. I have spent over half of my life now as a patient, grappling with illnesses and issues of embodiment. In large part, it has been by speaking my struggles aloud that I have been able to heal. Telling my stories has allowed me to harness the power of the dark times to create connections and attain insight. 

As I sat there at LEAPS, witnessing medical students experiencing what I myself had experienced time and again–that relationships and wisdom come from baring one’s soul – I began to envision a way to enable more students to engage in this powerful narrative process. The seeds for my oral narratives podcast project Inside Stories: Medical Student Experiences were planted. I wanted to hear more student stories about the path to medicine, about struggles and triumphs, roadblocks and dreams. Through sharing over the course of that week, the students gained clarity and catharsis, and many remain in touch to this day. 

Inside Stories emerged from those conversations with LEAPS students. The idea was to develop a podcast platform that would enable medical students anywhere to both voice and listen to stories about medical student experience. Inside Stories’ mission is “to provide a means of personal healing, self-realization and empowerment through the sharing and receiving of personal stories, as well as to cultivate community among students in the often isolating medical school environment.” The interview process involves recording stories from current medical students, remotely or in-person. Recruitment has been done via word-of-mouth, social media platforms, and at medical humanities conferences. Student participants comprise a diverse demographic of men and women from all four years of medical school, of various races and nationalities, interested in medical fields ranging from OB/GYN to pediatrics to gastroenterology and many more. 

The topics addressed are vast. Hannah spoke about the challenges of navigating in medical school while being a mother. Petra reflected on how her spiritual path informs the challenges being a medical student. Katie discussed the encouragement she gained from finding her mentor. Leah shared how writing poetry aided her personal healing. Samar described how self-care practices helped her get through school. Angie talked about how her Syrian heritage drove her motivation to become a physician. Hieu shared his experiences as a community health worker in Uganda propelled his motivation to combat structural violence. Carlton described his motivation to pursue medicine in the South: to offer the African-American community a provider with whom they can identify.

To date, over 40 students have participated in the project. One participant reflected: “At first I was intimidated at the prospect of sharing my deepest feelings to a public audience, especially because I had never verbalized these feelings and in general I am a very private person. Ultimately, I'm glad I committed myself to this project and am proud to have my message out in the open.” Another described how sharing felt validating: “It made it seem real - everything that I had been through.”

I hope that by listening to the accounts of the courageous, insightful students whose stories constitute this project, others will follow suit and be inspired to share the personal stories at the heart of their journeys through the world of medicine.

If you or someone you know might be interested in telling their story about their experience in medical school, or if you have further questions about Inside Stories, please contact Annie and visit their website and on Twitter @Inside_Stories.

Originally published on the blog "The Doctor is Listening" on September 14, 2014

Sara and Kerry met as students at Bates College in 2001. They were together for eight years, and planned to get married in August 2010. Last June, just two months before the wedding, Kerry committed suicide using a gun he purchased legally that same day. He was 27 years old. This was a complete surprise to everyone who knew him, and obviously devastating.

At the time, both Sara and Kerry were in graduate school in the Northwest: Sara was in Seattle, Washington, getting a Ph.D. in Molecular Biology, and Kerry was in Eugene, Oregon attending law school and pursuing a concurrent masters degree in conflict and dispute resolution. They completed their studies late last spring, full of energy, ambition and promise, and were planning to move back east before the wedding, for their careers and to be closer to Sara’s family in Maine. For Kerry, the move never happened.

Kerry had been plagued by chronic pain in his arms, back, and legs for over a year. As a student, he did not have cohesive medical care, which meant he saw multiple providers and had to tell his story over and over again. The cause of Kerry’s pain was never determined. None of his physicians had followed him over time, and none knew him well as a result. Kerry was not one to complain about pain, and indeed, until he developed these debilitating conditions, he had been an athlete in excellent physical health. At times, given the lack of a clear diagnosis, he felt that the legitimacy of his pain was called into question. Ultimately, he was left with a sense of desperation and hopelessness.

Suicide is a major public health problem. According to 2007 data, it is the 11th leading cause of death overall and 4th leading cause of death for adults 18 to 65 in the United States. Everyday, approximately 90 Americans commit suicide.

What can be done to prevent suicides like Kerry’s? Recently, Sara and Kerry’s father, Dr. Mike Lewiecki, addressed this issue in an article, “Time to Reconsider,” published last month in The Journal of the American Medical Association.

Here, Sara (who is now a post-doctoral fellow in molecular biology at Massachusetts General Hospital) speaks openly about her experience of Kerry’s suicide, and about trying to move forward in the face of such a tragic loss.

Originally published on WBUR Commonhealth Blog, April 28, 2011

Resources:

For information about suicide, visit

http://www.mayoclinic.com/health/suicide/DS01062

http://www.cdc.gov/ViolencePrevention/suicide/

To learn more about suicide prevention and treatments after suicide attempts, visit

http://www.afsp.org/preventing-suicide/treatment

For support after someone you know died by suicide, visit

http://www.supportaftersuicide.org.au/what-to-do/information-for-friends-and-family

1-800-273- 8255 is the 24-hour National Suicide Prevention Lifeline in the United States that is ready to answer calls from anyone in a suicidal or emotional crisis and provide counseling and referrals. For this service in Spanish, call 1-888-628-9454.

http://www.suicidepreventionlifeline.org/

Liz was diagnosed with Ovarian Cancer in 2011, just a few short months after her mother was diagnosed with the same disease. As an oncology social worker herself, she had a lot of experience with cancer, as a health care provider. Then, suddenly, she found herself in the uncomfortable role of "patient" and was forced to re-evaluate much of what she thought she knew. Liz shares her story with insight, humor and honesty. Here, you can watch excerpts from her June 2014 Healing Story Session.

All of our Healing Story Sessions are videotaped, and some of our participants have courageously agreed to have their videos shared on our website. Here, you can watch Marie share her story of living with Stage 4 Colorectal Cancer. Marie participated in our first Healing Story Session in March, 2014. Her story is humbling, moving, and funny. She has amazing perspective, wisdom and a terrific sense of humor. It is worth a watch!

Essay by Marie Pechet:

As mother to two young boys who love to watch movies, certain lyrics tend to run through my head, like Chitty Chitty Bang Bang we love you! or You’ve got a friend in me…. from Toy Story.

Since my most recent cancer diagnosis, the lyrics that stick in my mind are from Frosty the Snowman:

Frosty the Snowman
Knew the sun was hot that day
But he said let’s run and we’ll have some fun
Now, before I melt away….

I was initially diagnosed with colorectal cancer when my sons were 1 and 4 years old. At that time, we put our lives on hold for an entire school year while I had surgery to remove part of my colon followed by chemotherapy to kill any remaining cancer cells. Our lives revolved around my healing, and any treatment that might make me well again — like acupuncture or sleep — took priority. While I missed doing many activities with the kids, my husband and I decided that the trade-off would be worth it in the long run.

After nine months, I completed chemotherapy. There was no sign of cancer, and I returned to living my life.

Like many people, being diagnosed with cancer shifted my view on what was important, and I swore that I would never again take life for granted. But one of the beautiful things about living life as a healthy person is that you do get to take it for granted. So, as I returned to health, I also returned to doing all the things that I swore I would never do again. I became easily annoyed with other drivers, got impatient with the kids, juggled too many commitments, and spent time doing things out of obligation rather than joy. Still, this made life feel comfortable and normal, and there seemed to be security in that.

Of course, security is an illusion, and almost a year later, we saw the first signs that the cancer had returned.

Like a lot of bad news, it was delivered over the phone. Though the doctor primarily called to have me repeat a blood test, the request gave me an ominous feel in the pit of my stomach.

I hung up the phone and sat in the kitchen, looking out the window at my boys, now almost three and six years old, playing in the backyard. It was a warm spring day in late May, they were running and laughing, and I realized that, more than anything, I wanted their life to continue that way.

I also realized that I wanted a planter on our back deck, and now seemed like as good a time as any to get it.

I called the boys– we were going on an adventure! They were excited and we drove to the best plant store I knew. I wandered around the enormous planters while the boys amused themselves playing in the water fountains. At first, I tried to keep them out of the fountains, but the sales folks didn’t seem to mind, so I let it go.

By the time I made my purchases, the laughter was bubbling out of their bodies and water was dripping from their clothes. As we got everything into the car, the boys stripped down for a naked ride home and the saleswoman commented that I was the calmest mother she’s ever met. We had a truly beautiful day in spite of the news, and I remember that triumph every time I look at that planter.

The rest of our summer and fall days were filled with ultrasounds, blood tests and surgeries. I had one 2½ hour surgery to remove and rebuild my entire rectal area, followed a few months later by a 7½ hour surgery to remove it all again. This surgery included a full hysterectomy to remove a large tumor growing on an ovary and touching every other abdominal body part, and the surgeon removed parts of the fat in my abdomen where there was evidence of more tumor growth.

Doctors at MGH and at Sloan Kettering told me that both the surgery and the chemotherapy regimen would need go 100% to have a chance of long-term survival. In the last surgery, there was tumor left behind, and we learned that cancer cells were in my abdominal fluid. So we had more work to do.

Only three weeks after that surgery, I started a regimen of chemotherapy every other week. This requires a full day at the hospital having an infusion. Then I go home carrying a continuous infusion pump attached to my chest for two days. The pump comes in a black bag containing chemotherapy; an IV line runs from the bag to a port-a-cath in my chest. Not only does the chemotherapy taste awful and remind me that I am a cancer patient, but it affects how I sleep as I try to keep the line from tangling, and how I shower, because I can’t get the apparatus wet. The kids know that they need to be careful around my body, and I worry that they are less spontaneous with their affection as a result.

I wish I could count down to the end of the treatments, but the doctors soberly recommended no end date.

Though I am trying every complementary treatment I can to get off chemo, it sounded like this would be our way of life for the foreseeable future. I knew that I couldn’t put my life on hold to heal; this IS my life.

It took a few weeks for me to accept this hated reality and the scariness of an uncertain future. I wanted to put the whole package back on the shelf and select a different path for myself and my family.

Slowly, the reality settled in and, while I still resisted it, I gradually tried to view it as a gift. I had time, I was able to be home and not in the hospital, and, other than cancer, I was in good shape physically and had a life I mostly loved. I started to look outside myself. I couldn’t imagine what this experience would be like for my sons. What could I do to help them navigate terrain that few adults are equipped to manage?

Determined to provide my boys with joy and laughter and – if my health took a bad turn, with happy memories of us all together — I started my mission to “have some fun.”

This is easier said than done, of course, particularly when the feeling of illness can permeate your life and be part of your household and psyche.

One night, I vomited every few minutes for six hours (even though I had taken the anti-nausea drugs that day). My husband was out of town, and my mother was staying with us. I couldn’t stop long enough to get her help, and she couldn’t hear me call her. Eventually, my three-year-old son woke up and found me in the bathroom. It makes me both proud and sad that he calmly walked to find his grandmother to help with the situation.

It’s hard to think about “fun” when I must unexpectedly miss a school assembly I hoped to attend or a movie that we all planned to see together. It is now a way of life that the kids accept, but saddens me as I watch them go off without me. As I see them walk away, I wonder if this is what their future will look like, and whether I will get to be part of it.

So, how could we have fun in the midst of all this? How could we have a household that is not permeated by illness, but is instead light and joyful?

Between all the cancer treatments, I was lucky enough to have a series of good days and we ran with them. In a one-month period we took the Polar Express Ride in New Hampshire, celebrated Christmas with extended family in Pittsburgh, went skiing for a week in Stowe, VT, and took a long weekend trip to Disney World. My husband and I traveled to New York (to see doctors at Sloan Kettering) and managed to make that into a mini-vacation with a shopping trip to Bloomingdale’s and a delicious Indian dinner.

In my quest to make the most of my time with the boys, I can push us all too far. In my son’s first-grade classroom, they tapped trees for maple syrup and processed it. Given his excitement about this, I decided that we would go maple sugaring one weekend. I packed the kids into the car and drove 40 minutes to take an hour-long tour, followed by hot dogs. At the end of the adventure, my six-year-old told me, “That wasn’t worth the long drive, Mom. We learned all that at school already, and the hot dogs weren’t very good.”

So I am learning to balance these trips with doing simple, everyday things, like riding bikes, playing restaurant and hunting for rabbits in our back yard. It is hard to know what would be memorable, and how to make the most of every day. I still have moments, even days, when I am not up to activity or even conversation. At those times, I try to remind myself that tomorrow might be worse, and that will make today look like a good day. So I’d better get up and repeat my mantra, the simple lyrics from Frosty the Snowman: We’ll have some fun now…

Originally published on WBUR Commonhealth Blog April 13, 2010

Resources:

To learn more about colorectal cancer, visit

http://www.mayoclinic.com/health/colon-cancer/DS00035

To find information and support resources for patients and families, visit

http://www.ccalliance.org/patients/index.html

http://www.cancer.org/cancer/colonandrectumcancer/