Harnessing The Healing Power of Stories

 

DONATE

Health Story Collaborative Blog

Harnessing the healing power of stories...

Making the Grade: Brain Surgery as a Treatment Option for Refractory Epilepsy

By Laura Beretsky

 

I was sorting through the sea of email, when I saw the Epilepsy Foundation of New England’s posting in purple and black font: Epilepsy Support Group Beyond Medication: A Discussion about Surgery. Though my seizures had been under control for almost three years, I still reviewed the foundation’s notifications. I noticed immediately that all the panelists were medical practitioners. There were no patients on the panel, and I felt indignant about this oversight. They needed a patient in the room – somebody who chose surgery as an epilepsy-treatment option, who could answer patients’ questions firsthand. I felt compelled to be that person, and avail myself to whomever showed up, so I registered, lined up childcare, and marked my calendar.

 

The event was held on a damp evening last spring. I took the subway to the Charles Street stop. As I navigated the streets in front of Mass General Hospital, I observed the traffic controller directing the EMT’s parking the incoming ambulances. I was struck by the sheer number of personnel required to deal with each traumatic predicament. As I watched, I was immediately brought back to the day I required emergency brain surgery: I had been rushed to this very place, where a neurosurgeon on call performed the operation. I thanked my lucky stars that day was almost three years behind me. Now I was at MGH by choice, on my own terms.

 

The panel was held in a cramped nearly windowless conference room. I settled into a chair, and looked around the table. The MGH doctors were easy to spot in their standard white coats, and I recognized the third doctor from the Epilepsy Foundation’s website. The fourth practitioner was the nurse who was leading the meeting. The patient turnout was even smaller than I expected: There were four of us, one patient for each presenter.

 

We each introduced ourselves and I learned that every patient in the room had already had elective brain surgery to try to control seizures. (So much for my good intentions of sharing the scoop on surgery with somebody who was on the fence.) The nurse gave a PowerPoint presentation, complemented by a three dimensional plastic model of the brain. She passed the molding around, and explained the basics about seizures and brain surgery, acknowledging that everybody in the room probably already knew a lot of this information. I suspected she was more disappointed than I was.

 

The attendees’ demographics were varied – we represented different races, genders, and ages. Only two of us had full seizure-control – myself, and another patient whom I’ll call Marie - and each of us had two different brain surgeries a piece. Marie had initially had a vagus nerve stimulator installed, which entails inserting a silver dollar-sized pacemaker-like device into the upper chest that a neurosurgeon winds around the vagus nerve in the neck. When Marie’s seizures recurred, she resorted to a full-fledged craniotomy, which was successful.

 

I first had an elective right temporal lobectomy in April 2014. I was seizure free for two months, until my brain imploded due to a subdural hematoma that had developed subsequent to the surgery. A subdural hematoma is like a giant bruise on the thick membrane under the skull, surrounding the brain. I’m still not sure why the hematoma developed. The neurosurgeon said it may have been caused when a vein in my brain got stretched during the temporal lobectomy. But it may have been brought on when I accidentally banged my head against the freezer door, while retrieving the ice cube tray. The emergency craniotomy was harrowing, and brought on a series of grand mal seizures – four in a week. Full recovery took over a year, as I had to take inordinate amounts of anticonvulsants, to control seizure activity. The medications made me lethargic, but over time I was able to titrate them down to something tolerable. Eventually I was both functional and seizure-free.

 

My neurologist calls my story a success, which feels like a misnomer. While it’s true my seizures were ultimately brought under control, it seems misleading to call a procedure “successful” when it results in a grueling near-death experience. Yet as I listened to the others’ stories – those who had only had one brain surgery, and still had refractory seizures – I felt lucky. One patient also had severe memory loss resulting from the surgery. The other spoke of the disappointment that came with having his driver’s license revoked after the seizures returned. Their journeys are confirmation of surgery’s poignant fallibility.

 

Brain surgery has a 70% success rate as a treatment option for refractory epilepsy, a percentage most teachers would call C minus. When you get a mediocre grade at school, there’s typically wiggle room to make it up – an extra credit assignment, or retake exam, perhaps. When brain surgery doesn’t work, the only possible option for a grade boost is a second surgery. At best this is a huge undertaking, beset with a multitude of invasive extensive pretests. Yet that is what the neurologist is likely to suggest to a post-surgery epilepsy patient who still has refractory seizures.

 

When the panelists asked for feedback I piped up, “I think it’s surprising that everybody in the room has already had surgery. I expected there would be patients here with questions about surgery, but we’re all old hands at this.”

 

“My patients think if they attend something like this, they’re committing to having surgery, and they’re not ready yet,” an MGH neurologist responded. “What advice would you give to a patient considering surgery?” she asked the group.

 

“I’d tell them that if they’re brave enough to live with uncontrollable seizures, they definitely have enough chutzpah to undergo surgery,” I offered. “I’d tell them it’s a scary, taxing procedure, and no matter how good your doctors are, there’s a lot they don’t know. Also there’s no guarantee of success.” I looked at the others around the room – we were living proof.

 

Perhaps the doctor would pass my insights on to her anxious patients. One thing I knew for sure: a doctor cannot convey the huge disappointment a patient feels if s/he goes through this procedure, and still has seizures. For the patient choosing brain surgery to treat uncontrollable seizures, there’s a 30% chance of that outcome, making it a significant gamble. They should make that wager only after they’re fully informed about the mediocre success rate, and the ample risks involved, as they are taking an enormous leap of faith. Hopefully, they will make the grade.

 

 

Laura Beretsky is a writer who lives in Somerville, Massachusetts with her husband, children, and cat. Her poetry has be previously published in Poetry Motel, and The National Library of Poetry's Moment in Timejournal. She is currently working on a memoir about growing up and living with epilepsy.

 

 

 

 

 

 

 

 

Guillain-Barre Syndrome - My Story

By Penny Shaw

 

In 2001, when I was 58, I developed odd symptoms in my legs - pain and weakness, falling on the sidewalk and unable to get up without assistance. I first went outpatient to my physician who had no idea what the problem might be. Nervous and living alone in an apartment, I carried my portable phone with me. One evening I fell and couldn't get up. I called 911 and the EMTs from my neighborhood fire station came and transported me to the ER of my Harvard-teaching community hospital in Massachusetts. The physician asked me to get up from the examining table and walk. I told him the problem was not walking, but falling. He found nothing wrong with me and sent me home. A few days later, at home, I fell again. I called 911, got the same EMTs, went to the same ER, was told nothing was wrong and was sent home again. Then I fell a third time. Having the same EMTs for all the three calls, they assured me that this time they would insist I be admitted. I was admitted but to the geripsych unit , as they believed I was making my symptoms up for attention! This scenario is well known in the disability community. If a physician cannot determine a medical cause for reported symptoms, the default position is too often psychiatric.

 

I was placed into a bed and later an orderly told me to get up, as the psychiatrist wanted to interview me. When I told him I couldn't get up, he told me I was lying. After the interview, I asked to see a "regular" doctor. She came, had blood work done and later told me the results indicated kidney failure. She put me in the ICU, all the while I kept saying to everyone "It's my legs" to no avail. Retrospectively, I know my elevated creatine level indicated not kidney failure but evidence of a rare muscle disorder. After 3 days in the ICU without kidney failure, the team finally decided to listen to me. They did a muscle biopsy and told me I had Polymyositis. I was in a med-surg unit for a few days, commenting each evening to my attending "This is odd. My feet are paralyzed". Next evening "My ankles are paralyzed", Next day "My lower legs are paralyzed". Then I had complete respiratory failure and was in the ICU on mechanical ventilation for four months, not expected to live. A friend told me the medical team was frantic, not knowing what was wrong with me. Eventually, I was discharged to a respiratory rehabilitation hospital as I was still medically unstable. I stayed for a year. I was then discharged to a nursing home on a trach and feeding tube, where I have been living for 13 years. In 2006, I was decannulated after 5 years intubated, to the surprise of many.

 

In 2010 I went for a consult with a Rheumatologist at a Boston teaching hospital where I was made a research patient. After 9 years, I got my correct diagnosis- Guillain-Barre Syndrome (GBS). The team concluded I have GBS based on three factors - my report of what I have since learned is called "upward progression of paralysis", the fact that Polymyositis is not a paralyzing disorder, and finally, by looking at the original muscle biopsy slides, where the inflammation of the muscle tissue was insufficient for a diagnosis of Polymyositis. Because of the failure to be properly diagnosed, I never had the opportunity for treatment of GBS in the acute phase.

 

Today, I am in my 14th year as a nursing home resident due to quadriparesis, an inability to not only walk, wash, and dress myself, but also to cook and clean. I can use my hands in spite of the contractures of my fingers, and can brush my teeth, feed myself, turn pages of books, read, write and use a computer. My mind is intact. In 2011, I got a power chair which permits me to go outside when I want, after 9 1/2 years living inside facilities. I'm an accidental nursing home and disability advocate. In 2011, I read an article in the Boston Globe about the possibility of a nursing home bed-hold program being eliminated. This would have put me at risk, after a hospitalization, of losing my "home" and having to live in another facility, if my current bed were filled while I was away. I wrote a letter in support of retaining the program to our House Ways and Means committee. The letter was circulated and I was asked to become a state and national nursing home advocate. I am now an active nursing home, disability and elder advocate, nationally published writer, speaker and consultant. You can find some of my work by googling "Penelope Ann Shaw, PhD". I am leading an interesting, and hopefully useful, and fun life as a survivor of acute GBS. I enjoy my personal life immensely, mostly my lifelong friends who have supported me in every way during my medical journey.

 

Originally published in 2016 by the GBS/CIDP Foundation International: “It’s Only Rare Until It’s You. Stories of Strength and Survival from the Guillain-Barre and Chronic Inflammatory Demyelinating Polyneuropathy Community”. Reprinted with permission.

 

Penelope Ann Shaw, PhD, a doctor of French Language and Literature, is a former university faculty member and administrator of English Language Learning. Now a nursing home resident, she is on the boards of the Massachusetts Advocates for Nursing Home Reform, and the Disability Policy Consortium. Boston. She is a member of the disability patient access focus group at the Massachusetts General Hospital. Boston. She was named an elder trailblazer for Older Americans Month 2016 by the U.S. Department of Health and Human Services. Administration on Aging's Administration for Community Living.

 

 

 

Breaking Out of the Isolation of Illness

 

An Interview with Molly Stewart, Mission Services Director at the Cancer Community Center of South Portland, Maine 


 

 

By Val Walker

 

A Cancer diagnosis and treatment can be an isolating experience for many of us. I wanted to learn from Molly how a support organization like the Cancer Community Center could help us break out of isolation by fostering new friendships and a sense of community. On paper, of course, we could assume a community center was supposed to build connection, but in reality, I knew it was difficult to get people engaged after a life-changing illness such as cancer. What did it take to get people in person to bond again after a long period of being in survival mode and pain?

 

Val: A Cancer diagnosis can be an isolating experience. Molly, what does it take to break through the isolation many of us go through?

 

Molly: Breaking through isolation takes courage. After a cancer diagnosis, your social needs could change. And even though you know you need to take the first step, you might not even be sure what you’re looking for. You don’t know what to expect. It can take a lot of courage just to walk through our doors at the Cancer Community Center. And before you’ve walked through our doors, it’s taken courage to recognize you’re lacking support and want to do something about it. It’s not unusual for people to express surprise, disappointment or frustration with responses to their cancer diagnosis.

 

Speaking of the courage to be open and vulnerable, I love the work of the author, Brené Brown (The Gifts of Imperfection, Braving the Wilderness). She writes beautifully about the courage it takes to show up for each other, and “letting ourselves be seen.” Stepping into our doors at the Cancer Community Center is a statement that we’re brave enough to let ourselves be seen, to be open and vulnerable. We hope that is a healing step—just coming to the Center.

 

Val: It’s heartening to hear how welcoming you are for those brave enough to step through your doors. Are most people looking for the same kinds of connections and resources?

 

Molly: It’s important to remember that everyone has different needs when it comes to social support. We’re each unique in what we want, and our social needs change over time. Some people coming to the Center are looking to expand their social network, and others just want a quiet, private space to talk with one another. Some people are aware that they lack social support and want to engage and make connections in the activities at the Center. Others may have enough support from family and friends, and want to talk with someone who has been there.

 

Val: You offer classes, support groups, an individual buddy program, resources. What do you recommend for people living with cancer who feel fearful or hesitant about venturing into new connections?

 

Molly: I encourage people to take small steps in getting out again. You might ask, “What am I looking for?” Pay attention and become more aware of the social aspects in all areas of your life— your physical, emotional, spiritual, financial, and occupational needs. Who is there in these different areas of your life? By just being aware, assessing and reflecting how people influence us or nourish us (or not), we can choose what is best for us as we resurface from isolation. I’ve studied social science research, and as humans we are wired to be social. We want to belong and feel accepted.

 

Val: I believe strongly that anyone recovering from isolation, whether from an illness, or a loss, needs a period of social recovery. During our ordeal when we’re in survival mode, we may have lost our confidence in how to connect with others. We might even feel despondent about people “not being there” for us. What do you have to say about our social recovery after a long, lonely period of feeling disconnected?

 

Molly: If we’ve been disconnected and isolated for a time, and experienced a major life change, we might need time and support to start connecting with others. We might have rusty social skills, less confidence in making connections, or the lens with which we are making connections has changed and we have to adjust to a new social perspective. What I witness with many of our community members is that they’re building social confidence, after a difficult life experience. If your ability to connect socially were a muscle, after a time of change in your life (whether that is an illness, the birth of a child, or retirement) you might need to rebuild your social strength with conditioning, to practice in safe and supporting social situations. Once your social muscles are toned up, you feel more prepared to go out into the world, to your workplaces, families, friendships, and communities, having had safe and supportive social interactions that helped to integrate that experience into yourself.

 

Val: That’s a brilliant way of looking at rebuilding our confidence to be social again! Yes, it’s social conditioning, social muscling-up. Having the Cancer Community Center as a safe place to muscle-up and practice being socially active is a way to prepare us to get back out into the world. What have you learned from working at the Cancer Community Center as their mission services director?

 

Molly: Val, I’ve had the experience of interacting with hundreds of people diagnosed with cancer and their loved ones when they come to the Center to find support. We sit down often one-on-one with every new community member. When they first come in, they’re often scared and overwhelmed. We share information about the programs at the Center, how we can help and work together to identify what they’re most interested in. Many activities at the Center are based on a peer support model which means we create opportunities for people to connect with someone else who has had a similar experience. We offer support and educational groups, complementary therapies, nutrition and movement activities. When someone who is recently diagnosed talks with another person who has been there and knows what it’s like to get that diagnosis and try to figure out the path ahead of them, it's like seeing a person in the dark find a flashlight. All of a sudden, there is hope. They understand that others have been down this path, and they're here to help and share what they learned, what worked, and what was hard for them, and that every experience is different. It's reassuring to know you’re not alone.

 

Val: Would you mind telling us a personal experience of breaking through an isolating time in your own life?

 

Molly: I have had several times, but the most powerful one was when my son was born. I was in grad school when Leo was born. First, there were not a lot of other pregnant grad students, and I was a new Mom. Talk about a life change--you’re sleep-deprived, have a huge responsibility of caring for another human being, and you have never done anything like this before. You feel totally challenged every day, and often I felt like I didn’t know how do this. I was fortunate to have Birth Roots, a support organization for young parents in my city. I was attending a class for new parents, and heard how other parents were coping, or not. I received the benefit of learning that everything I was going through was normal—yes, crying that much is normal. It gave me more confidence in my new role as a mother. After the group was over, I went back to school, and continued to identify ways to connect with other families. I knew that to have balance in my new role, I had to keep integrating the role of Mother into my identity. I was never a mother before, and now, five years later, that role keeps shifting. First, I was a new parent, then I was the mother of a toddler, then a preschooler, and now have a son in elementary school. It's always changing, but what I have learned is that I need the social support of other parents because they “get it.” They are there, and that connection helps immensely to reduce the anxiety, isolation and confusion of trying to navigate the vast challenges of parenthood.

 

Val: Thanks so much for your story and insights, Molly. It’s clear we need support organizations when we feel isolated by a major life change. It makes life so much easier to have people at the ready who understand our predicament, so we can practice being socially engaged in new ways. It’s heartening to learn from you how we can foster long-lasting, deep friendships, and a build a solid sense of community.

 

Molly: I enjoyed our time, and thanks so much.

 

 

For more information about the Cancer Community Center: www.cancercommunitycenter.org.

 

 

 

Val Walker, MS, is the author of The Art of Comforting: What to Say and Do for People in Distress (Penguin/Random House, 2010). Formerly a rehabilitation counselor for 20 years, she speaks, teaches and writes on how to offer comfort in times of loss, illness, and major life transitions. Keep up with Val at www.theArtofComforting.com.

 

 

 

 

 

 

 

 

 

 

College Voices: All Things Compassion and Happiness

By Heena Nissaraly

 

When a heavy object falls on one’s foot, it exerts pressure on the skin and muscles, and that hurts. Raw sensation is the pressure, and everything beyond that is interpretation. To feel is a combination of raw sensation and interpretation from the brain based on past experiences.

 

But when one loses the ability to recall, one loses the ability to interpret and sometimes even the ability to feel.

 

My grandmother’s gradual decline all started over a decade ago, in the Malagasy province of Morondava, in Madagascar. My father remembers the day when everything radically pivoted and his world turned upside down: after a strenuous day of housework, my grandmother —for just a moment — confused day and night.

 

A few years later, the diagnosis was given: Alzheimer’s disease, coupled with brain aging and a strong 25-year-old depression. My grandmother moved to the capital city of Madagascar to become the sixth resident of our household. My parents, sisters and I shaped our lives and schedules according to what we thought my grandmother would feel most comfortable with. She was the beloved center of our lives.

 

Within several years, all my grandmother could remember clearly was her name. It seemed as if she had entered a parallel universe she had created herself. She got lost in her thoughts while tracing flower patterns with her feet and counting the number of lights out loud. There was no way of telling what she was thinking. I could not bare thinking about how often she felt lost, alone, or misunderstood. The thought haunted me for days; it made me feel utterly helpless.

 

As her amnesia worsened and her brain activity declined, my grandmother stopped interpreting raw sensation, and, slowly lost her reflexes. She sometimes forgot to drink water after putting a pill in her mouth, and chewed on the medicine instead. The bitter taste surely made its way through the taste buds on the back of her tongue, and was probably sent to her central nervous system, but somehow was not interpreted. Not a single cringe showed on her face.

 

One may say that her inability to interpret sensation caused her to stop feeling. Indeed, not once did my grandmother show signs of anger, sadness, or even slight feelings of impatience. But she often laughed. Each time she disappeared into her parallel world, I witnessed genuine happiness.

 

Some people believe that acts of kindness and empathy do not make a difference in a world in which man has already reached the moon. But I believe that it is the little steps we make that end up being the most precious ones. Offering to share her popcorn while watching cartoons on TV made my grandmother happy. When I simply asked about her day, or commented on the flowers that grew in the garden, a smile appeared on her face.

 

As I grew older, I understood the importance of empathizing with my grandmother. And how could I possibly attempt to do so without her collaboration? I could not change the way she perceived her world, but I could change the way I perceived her world: it all had to do with acceptance.

 

Empathy, I feel, is the ultimate solution to alleviate one’s pain and help someone make peace with their condition. Within empathy lies acceptance. Coming to terms with a condition is the first step towards wellness. My grandmother was not part of the world I knew so well — this was a fact I could not argue against. There was no use in me trying to include her in the present by constantly reminding her of the time of day or the year, trying to bring her back into my reality only confused her.

 

In the last years before my grandmother passed away, my family and I ceased trying to heal her by forcing her to remember. We let her imagination go free, and even took part in her adventures. Her imagination, stimulated by compassion and attention, helped her recall certain pleasures of places, smells, sights, tastes, and faces from her past. This seemed to allow her to reconnect with small part of her old self, and make her feel more comfortable in her daily life. I am eternally grateful for all I learned from my grandmother. Her story taught me the immense powers of compassion.

 

Heena Nissaraly is a sophomore at Boston College majoring in Nursing and minoring in Medical Humanities. She aims to become an empathic nurse specialized in anesthesia or hospice care, and hopes to eventually improve healthcare in Madagascar.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Sidewalk Lessons

By Chris Anselmo

 

 

I’m sure you’ve heard the saying, “It’s not how many times you fall that matters; it’s how many times you get back up.”

 

It’s a great message, but to me, at least in my circumstances, it doesn’t tell the whole story. Don’t get me wrong, getting up from a fall, whether physical or emotional, is incredibly important. Learning to pick yourself back up is a valuable skill, and is representative of a special type of grit and determination that’s needed to get through the realities of life. But there’s more to it.

 

As someone who is well-versed in falling after nine years living with Miyoshi Myopathy, an adult-onset form of muscular dystrophy, I’ve become an expert on the subject, for better or worse. I’ve fallen all sorts of ways – I’ve tripped on cobblestone sidewalks, I’ve stumbled getting off a bus, and I’ve been knocked over by oblivious strangers engrossed in their iPhones. I’ve even fallen over after sneezing. Even with the greatest of precautions, it doesn’t take much to fall, especially now that I’m nine years into this disease, a physical shell of my former self.

 

As a serial faller, it often feels like the famous saying has been turned around on me: It’s not how many times you pick yourself back up, it’s how many more times you’re going to fall now that you are upright again.

 

Falling, as you can imagine, is no fun. It’s not something I’ll ever quite get used to. But thankfully, so far, I’ve gotten back up every time, although in the last few years I’ve needed the help of others to do so. Assistance or not, there is pride in getting up after a fall, dusting myself off, and continuing on with life.

 

However, it isn’t from the act of getting back up where I’ve learned life’s most important lessons; it’s on the ground post-fall. It is here –on the cold, miserable pavement, or the hard wooden floor, or the cushiony carpeting (oh look, the Cheerio from yesterday’s breakfast), where I’ve had to confront the sobering realities of my life, mainly, that my disease isn’t going to get better anytime soon, if ever. Lying on the ground, unsure how I’m going to get back up, is terrifying. Every time it happens, my body trembles, my heart races uncontrollably. I often feel like I could pass out, that is, if I don’t throw up first.

 

But it is in these most frustrating moments after a fall where I have found the resolve to keep going, unlocking strength I never knew I had. I found this resolve - to continue living my life despite the weighty knowledge of what lies ahead – ironically enough, after trying to give up.

 

It was middle of winter in early 2013, and I was going on five years dealing with increasing muscle weakness that I knew was only going to get worse with time. That night, on a side street in Cambridge, Massachusetts, I fell for the umpteenth time, but it was the first time I couldn’t pick myself back up using my own strength. Instead, I had to crawl over to a parked car and use it as leverage to stand up again. When I finished, exhausted, I plopped myself onto the hood. I wanted to quit life right then and there.

 

Over the years, I had suppressed my emotions, putting on a strong façade to keep myself sane day after day. But on this night, it was all just too much. I had fallen twice in five minutes, and if the car wasn’t there to bail me out, I might have taken myself up on the alternate option to crawl under a nearby bush and wait for life to pass me by.

 

In those dark moments on the ground, when I failed over and over again to get up – first with my body weight, then with a flimsy metal fence that never had a chance to support me - I thought this was going to become my life, my future. Fall. Get up somehow. Fall again. My life reduced to perverse clockwork.

 

On the hood of the car, I felt an exhaustion I had never felt before, and have never since. It was a combination of physical exhaustion and emotional burnout. I had used all my strength to get up onto the hood, after crawling 20 feet to even get to the car, after failing twice to get up, after having fallen again five minutes before that and pulling myself up using a stronger fence further down the street. Giving up was not only an emotional decision, it felt perfectly rational. How could I deal with this every day? And it’s supposed to get worse from here?

 

Deep down though, I couldn’t give up. Maybe it was my subconscious giving me a jolt, telling me to snap out of it, or maybe it was a divine nudge reminding me I had so much yet to live for – I believe it was both. Eventually, I pried myself from the hood of the car and walked, ever so carefully, the remaining block to my apartment.

 

It was only months later that I could fully understand how that experience was a turning point in my life. The falls haven’t gotten any easier since then, but in finding my inner strength that night – and I had to really be pushed to brink to find it – I gained a new confidence. I realized that if I could withstand the pavement, the failed attempts to get up, the dark thoughts that swirled through my mind, even the knowledge that falls like this would become a regular occurrence, I could withstand anything. Suddenly, dreams that were dashed no longer seemed impossible.

 

Doors that had closed in my face opened once again. No problem seemed insurmountable. This audio clip, recorded on the phone and edited by Dr. Annie Brewster, chronicles my nine-year journey, back to 2008, when I was first diagnosed and started feeling symptoms, on through the present day. My life these last nine years feels like a three-act play – Act 1: Denial, Act II: Depression, Act III: Acceptance.

 

I am in a better place today, although I still fall, and still occasionally wonder if there is a limit to how much frustration I can take. But it is from these moments on the ground, when I am forced to confront the magnitude of my disease, watching helplessly as the mobility of my former life slips further out of reach, that I have learned to let go. To let go of the feeling of permanence that each fall brings. To let go of the notion that this is all my life has been reduced to. To let go of what I can’t control. Falling is merely one activity – albeit a miserable one – in a life that is so much more than my muscle weakness. Falling can be physical or emotional, but it happens to all of us, repeatedly, even with the most careful planning. I hope that my story – and my lessons learned from the pavement - can be one of many stories that you can refer to when life knocks you down.

 

Because, as I learned the hard way, and as the great saying should have gone, it’s not how many times you fall that matters. It’s not even how many times you get back up. What matters is knowing that you are going to fall again, and when you do, that the sidewalk is powerless to stop you. You are more resilient than you know.

 

 

Listen to Chris's story and hear more audio stories from Health Story Collaborative here.


 

College Voices: Birthday Balloons

By Isabel Taylor

 

My younger brother, Simon, will always be my best friend. He was born with a mitochondrial disease and was never able to speak or walk, yet he exuded kindness through his unique and loving personality. Simon's gratitude radiated during each of his days, no matter how tough. He often needed nebulizer treatments and suctioning to aid his breathing, but he flashed us huge grins despite the discomfort of the mask and tube, as if we were all in on the same joke. He truly loved and appreciated the things that many of us take for granted, like taking long naps, getting off the bus after a day spent at his special education school, going to music class, and spending a sunny afternoon sitting outside. He especially loved spending his birthday with family, friends, and colorful balloons tied to his wheelchair. I will always remember the huge smile he had whenever he caught a glimpse of the Perry the Platypus balloon I gave him for his twelfth birthday, which somehow remained inflated for months.

 

Several months after his twelfth birthday, Simon’s respiratory problems became severe. We learned that he likely had less than six months to live. This news was difficult for me to handle as a sixteen-year-old, but my parents and friends offered immense support. My best friend often escorted me out of the classroom when I needed to cry, and my mom frequently picked me up early from school and took me to our favorite coffee shop. In November, Simon began a hospice program and continued to enjoy each day through massage therapy, music, his teachers and caregivers, and our family.

 

On March 26th, less than three weeks after Simon’s thirteenth birthday, I received the call from my parents that I had been dreading. They told me that they raced home after an urgent call from his caregiver. He was having more trouble breathing than they had ever seen, and they weren't sure how much time we had left with him. Since he had survived many rough days in the past, I clung to the hope that when I got home he would still be smiling at his orange thirteenth birthday balloons.

 

My mom stopped me at the door on my way inside the house. She told me Simon had passed away a few minutes prior. My vision blurred and I dropped my backpack. I ran into my parents’ room where Simon lay, still believing that he would be okay. Once I physically reached his body and could no longer hope for another day with him, it felt like my whole life shattered. I hugged him, crying, and wondered how we would continue on without our favorite ray of sunshine.

 

While losing Simon was unbelievably traumatic and devastating, it motivated me to spend time with other children and adults with special needs. Two summers after Simon’s passing, I worked as an assistant teacher at his special education school and as a respite caregiver for people of all ages with disabilities. I am grateful to have had the ongoing opportunity to work with individuals with exceptional needs and to teach and learn from them. My experiences with Simon and other members of the special needs community with whom I connected have inspired me to work toward a career in medicine. I plan to dedicate my life to offering care and love to children with disabilities.

 

 

Isabel is a junior at Vanderbilt University majoring in Medicine, Health, and Society. She grew up in Michigan but currently lives in Boise, Idaho with her Great Dane, Arthur.

 

 

 


Learn more about the Community Voices and discover more empowering health stories here

 

College Voices: Ouch

 

By Hannah Todd, Rice University and the University of Texas

 

 

Putting the pieces of pain together can’t be done by just asking, “Where does it hurt?”

 

I have always been somewhat accident-prone. Each time I tripped and fell as a child brought the same routine. I would sit on the edge of the tub in my parents’ bathroom with a bleeding knee and a tear-streaked face as my mom or dad got out the Band-Aids, Neosporin, and the despised hydrogen peroxide (it stung too much when it fizzed). I would point to the scrape and roll up my sleeve to reveal any other “boo-boos.” I would leave their bathroom with my lacerations clean, my face dry of tears, and feeling okay, albeit a little achy.

 

Nearly fifteen later, as a sophomore in college, I shadowed Dr. X every Wednesday afternoon for the practicum component of a semester-long course on Medical Professionalism. In Dr. X’s office, many patients would come in with a laundry list of pain, soreness, discomfort, and hurt. The question “Where does it hurt?” seemed insufficient to understanding their pain fully. The patient may have struggled to push back on Dr. X’s hand with their face. They sometimes found it difficult to answer inquiries such as, “When did the pain start?” or, “Is it radiating?” All of these are pieces of the understanding required to provide adequate and appropriate treatment. Doing so demands the asking the patient multiple pointed questions while also testing them physically. This understanding appeared to be elusive and difficult to acquire for three main reasons: time, creativity, and trust.

 

Time

 

During my Wednesdays with Dr. X, I often noticed a tension between the care patients want and the realities of care in our current healthcare system. Patients would often try to show her pictures of their grandchildren or a recent vacation. Sometimes, they, an aging parent, wanted her to explain over the phone what was wrong with them to a concerned child who could not make the appointment. She always obliged as best she could but the system in which she provided care made it difficult. Dr. X was known in her practice for seeing roughly half as many patients as her fellow physicians. She often mentioned to me how difficult it was to accommodate these seemingly irrelevant components of a patient visit when they were often what made the patient most comfortable and most inclined to tell their story.

 

The doctor’s visit with the patient can only last so long, for other patients need care too, and there are only so many hours in the day. Thus, even when the “right” questions are being asked, patients may not have the opportunity to fully translate their feelings, aches, and pains into words with context (a mosaic of experiences, emotions, environment, and everything in between). As a result, it is challenging to gain a strong understanding of what they are experiencing and subsequently make a suggestion about how to treat their condition(s).

 

Creativity

 

I often noted Dr. X’s inventiveness on our Wednesdays together, inspired by her ability to ask questions that led her closer to a diagnostic truth regarding the patient’s experiences. Sometimes people are insecure about their diets, how much they exercise, how often they take a prescribed medicine, and other areas of their lives in which they are not perfectly compliant with doctors’ orders. Thus, we are less likely to offer responses to a provider’s question that allow them to help us, for we are trying to protect ourselves without even realizing it.

 

This reminds me of visits to the dentist. When the hygienist asks if I’ve been flossing as she scrapes and polishes my teeth, I know that I have to be honest because she has the proof right in front of her. But we all often lie, feeling sheepish for not doing what was asked of us.

 

Sometimes a matter-of-fact question like, “Do you go to the gym regularly?” is sufficient for a useful answer that guides the doctor to a diagnosis. However, sometimes it seems more appropriate and productive to ask, “What is your daily schedule?” This gives the patient a chance to tell the doctor what they want, be it that the entirety of their exercise regimen consists of walking to work, or that they stop at Chick-fil-A on their way home for dinner. Although this question may not have appeared at the start to have a direct correlation with healthy eating/regular exercise, it may make the patient more comfortable and allow for a more organic conversation. When Doctor X asks more flexible and open questions, this allows for more creative and varied responses that are generally more constructive toward devising a care plan.

 

Trust

 

Meeting a patient where they are in a non-judging, kind, and sensible manner, they are much more likely to open up and let the provider know what hurts and how they feel. I trusted my parents to clean my wounds after a fall off my bike and bandage me all up, pointing them to the areas in need of a little love. Similarly, I observed Dr. X’s patients explain pain “at a level eight” that keeps them up at night with a trust that she will take their words and turn them into a diagnosis and treatment that gives them relief.

 

---

 

Although all patients are different, everyone expects individualized care from their doctor and are usually hoping to be healed. Time, creativity, and trust are crucial pillars that support how the provider meets their patient’s needs by putting their symptomatic puzzle together into a diagnosis.

 

When I was a little girl, I expected my parents to take my skinned knee and clean it up so that I was good as new. With Dr. X’s patients, their complicated aches and pains require more than just a Band-Aid, but she does have the power to offer them solace. I hope one day to be able to provide antidotes for my patients’ pain, and will strive to ask questions that allow me to do so.

 

 

Hannah Todd is a rising senior at Rice University, where she is majoring in Spanish and Policy Studies with a minor in Medical Humanities. Additionally, she is concurrently pursuing her Master's in Public Health at the University of Texas and ultimately plans to attend medical school, which would allow her to integrate personal, academic, and professional experience into care for and policy regarding children with medical complexity.

 

 

Learn more about the Community Voices and discover more empowering health stories here


 

 

Medical Student Voices: The Big Questions and Gray Areas

 

The Big Questions and Gray Areas: How I Grew During Third Year of Medical School

 

 

 

 

 

 

 

 

 

 

 

 

Three Pairs by Nicolette Overton 

 

Written by Alyssa Wohl

 

 

“It was incredibly hard. I learned more than I ever thought possible.”

 

My childhood friend Allison had asked me about my third year of medical school, which is notorious for being challenging, overwhelming, exhausting, rewarding, and exhilarating.

 

The first two years of medical school are typical school with weekday classes and unit tests every few weeks. Then during third year (called “core clinical” year), we are immersed in the day-to-day work of being a physician. We spend approximately 8 weeks working with resident teams in the hospital in each of the core medical disciplines: internal medicine, surgery, pediatrics, obstetrics/gynecology, and psychiatry. At the end of each rotation, we complete a national exam.

 

I went into third year expecting to apply, reinforce, and build upon the book knowledge accrued during my first two years of medical school, blissfully unaware of the uncertainties and philosophical challenges inherent to a patient’s medical care. But during third year, I mainly had to learn acceptance. Acceptance that medical decisions are rarely obvious, that internal validation need not be secondary to external validation, and that the best patient care starts with proper self-care.

 

As medical students, we have a vague understanding of the limitations of medicine. A Wall Street Journal article entitled “Why Doctors Die Differently” by Dr. Ken Murray details the phenomenon of medical professionals utilizing fewer medical services than the average American when making end-of-life decisions. Medical professionals witness patients receiving interventions that prolong the days, but sacrifice the quality, of life. People who work in medicine see the tolls that CPR, feeding tubes, and ventilators place on already vulnerable patients. The general public has been primed by the media to see these treatments as more often life-saving than not. Those without medical backgrounds hear what is possible; but medical professionals recognize what is realistic. During medical school, we are taught the contraindications to certain procedures or treatments. There is rarely discussion about what to do in that murky in between: when something can be done, but may not be in the patient’s best interest.

I will never forget a patient I had on internal medicine whose daughter demanded he be “full code”, meaning that if the patient went into cardiac arrest he would receive CPR and a breathing tube to be kept alive. The patient was 88-years-old, with metastatic colon cancer and an infection in his blood. I felt for the daughter of the patient. She had no other experience with this sort of care. I also felt for the medical provider, who described that giving this patient CPR would be inflicting immense pain and suffering (ribs break during CPR) to a patient who had an already poor prognosis.

 

These situations were common in the hospital. In these moments, I felt as if I existed in limbo. I resided in the in-between space; I was both the medical professional and the patient’s daughter. It was from this vantage that I realized everyone has the same goal: self-preservation while acting in the patient’s best interest. Each side just approaches the situation from a different angle.

 

End-of-life discussions were the moments when I grew the most. All of the physiology, pharmacology, and anatomy that I fervently studied meant very little when trying to quantify the quality of a patient’s life. I came to understand that sometimes, the best thing to do is step back, assess the bigger picture, and ask ourselves what we are trying to accomplish.

I also took stock of my own life during third year. I have always put pressure on myself to be “the best” and honed study skills over the years so that I know what I need to succeed. In third year, the evaluations by our attendings and residents are also factored in to our final grade. The way a student’s personality, interests, and sense of humor jived with a resident’s often reflected the student’s grade more than anything else. In the beginning of the year, I would often change my interests and style to fit that of the attending. I approach medicine from a bio-psycho-social perspective, but many of the doctors with whom I worked did not. Often, a doctor would scoff at the socio-economic factors involved in the patient’s health. I would feign disinterest, if only to appease the resident. As the year went on, I came to value my opinion of myself more than any one attending or resident’s opinion of me. Patients went out of their way to thank me for my help and ask for me to be there with them during procedures, which reassured me that my approach is valid. Though I did not always receive the best numerical grade, I was able to sleep better knowing that I provided patients with what I believed to be the best possible care.

 

Third year forced me to consider the big questions. I needed to come to terms with the impossibility of being “the best”, realizing that it can be easy to become so hyper-focused that we neglect what’s truly important. I faced my fears: not only will I not excel at everything, but I can’t expect myself to. I realized that ethical gray areas exist, and that what I typically worried about didn’t really matter. I had to start balancing self-care with self-actualization, and for that I would not trade anything.

 

 

 

Alyssa Wohl is a now fourth-year medical student from New York. She is hoping to work as an Adolescent Medicine doctor. She enjoys chocolate, yoga, and spending time with her two pugs.

 



 

 

 

 

 

 

 

 

 

 

 

 

College Voices: Buy Me Some Peanuts

By: Sarah Ramsey, Boston College '18

 

It was a humid night in June,

One of the hottest days of the year.


You could feel your hair standing up on its end,

As a cold and warm front collided.

 

It left passers-by wondering if the lightning would ever stop.

 

It did.

 

So people believed that the storm was over,

That all was well.

 

I was too loose.

 

A group of us were going to Fenway,

First game of the summer,

First beer of the week.

 

The change in weather felt like a good omen,

We bantered as we walked up to Yawkey,

Taking in the smells of Franks,

The shouts of vendors,

And the sight of RED.

 

As we moved past security,

And scalpers that hounded,

We made our way to our seats.

 

Suddenly,

To the right of me,

I heard a sickening sound.

 

Like the thump of a bird as it hits a window,

Or the crack of a gun as it soars through the air,

Or the split of a head as it meets concrete.

 

A man lay,

Cane sprawled in front,

Unmoving.

 

RED blood started pooling,

Pouring out of both ears,

Like my beer pouring out of its tap.

 

People were screaming,

But I couldn’t hear.

 

I kept thinking,

He is right next to me,

DO SOMETHING.

 

I thought back to the CPR training I had taken two summers before,

Was this it?

Is this what I was supposed to do?

Is this the final test?

 

I got confused and spun in a circle,

Walking around next to him,

Hoping that suddenly I would know his diagnosis,

As the loops straightened out in my head.

 

Looking,

Gaging,

Watching,

But not acting.

 

THANK GOD.

 

Someone else nudged him

Someone else was on a phone,

Someone else said help is on the way.

 

THANK GOD SOMEONE ELSE IS HERE.

 

My friends call me over,

Terrified,

But they know they are ok.

 

They don’t know him,

He’s not their dad,

Uncle,

Or brother,

But I know him.

 

He was standing right next to ME.

 

Just that morning,

I was telling someone about my degree.

What do you study?

Medical Humanities.

What does that mean?

EMPATHY.

HELP.

CARE.

LOVE.

SUPPORT.

Oh ok. I get it. We need more people like that.

I AGREE. We need more people like that.

 

NOT

Running away,

Waiting for someone else to step in,

A FRAUD.

A PHONY.

A DISGRACE.

 

As the stretcher wheeled itself,

And four EMTs rushed after it,

I considered chasing after them,

I felt sick.

 

I’m sorry man!

I didn’t know what to do.

I’m sorry man!

I panicked.

I’m sorry man!

I’ve never seen blood pouring out of a brain.

I’m sorry man!

I haven’t signed up for this.

 

But I didn’t.

 

Maybe I’m not EMPATHETIC.

Maybe I’m not destined to:

HELP.

CARE.

LOVE.

SUPPORT.

Maybe we need more people like that.

I AGREE. We need more people like that. 

 

Sarah Ramsey is an incoming senior at Boston College with a major in Operations Management and a minor in Medical Humanities. She is the Managing Editor of the Medical Humanities Journal of Boston College and a trip leader for the Appalachia Volunteers. Sarah aspires to use her business background to improve and expand health opportunities.


 

College Voices: Where it Hurts

 

Written by Evelyn Caty, Boston College Class of 2020

 

The day I learned that I needed hip surgery, I cried tears of relief.

 

On September 23, 2013, I was playing in a JV field hockey game when all of a sudden, after passing the ball to a teammate, I felt something go wrong. It was… a pop?… a snap?… a tear?… and it came from somewhere in my left backside. I could not identify precisely where—in my lower back, upper hip, or glute—I felt it. As I crawled off the field, I struggled to assemble an explanation to provide the athletic trainer. To this day, I cannot say exactly where it was or what it felt like, but I do know, as the past three and a half years have proven, that something was not right.

 

For the first eleven months after my injury I was diagnosed with a torn muscle in my hip, but physical therapy did little to relieve my pain. I began to see an orthopedic surgeon specializing in hips, who saw nothing notable on my MRIs and encouraged me to continue treating with physical therapy. After months and months of hard work without relief from the pain, I started to worry that I was somehow doing it wrong. Finally, a new MRI of my hip, this time done with contrast dye, showed torn cartilage in the joint. This would require surgery to repair. When, after a year of persistent and unidentifiable pain, as well as numerous consultations with hip specialists, a surgeon walked into my examination room and claimed that he knew exactly how to cure my pain, I sat on the table in front of him and sobbed. The recovery would be long and painful, but at least it would mean I was healing. At this point I would have done anything.

 

After my surgery, I completed nine months of physical therapy to rehabilitate my hip and the rest of my body. But as the physical therapy came to an end, I noticed that something still felt off. I occasionally had that same original pain; it was a pain distinctly different from the normal soreness of post-operative recovery, and I was all too familiar with how it felt. Worried that the operation had failed, I tried to ignore my discomfort for a year and a half. I was terrified that if the surgery had not provided a cure, then nothing could. This past December, after the pain suddenly grew much worse, I finally decided that I could no longer ignore my fears. I scheduled a follow-up appointment with my hip surgeon, who referred me to a spine center to look for other possible causes for my pain. To this day, my doctors and I are still searching for its source.

 

My pain taunts me. It comes and goes. It moves from place to place. It floats, it hovers, over my mind and body, cruelly defying articulation. The English language offers a myriad of terms to describe pain: sharp, dull, burning, throbbing, sore, stiff, tender… the list goes on. And yet, my three-and-a-half-year search for the words to most accurately capture my experience has left me with the following clumsy explanation: most of the time it does not feel quite like a throb, but more like a series of discrete pinching and tugging sensations with each movement of my lower body, located somewhere between my sacroiliac joint and L5 disc; other times—when I sit or stand for too long—it aches across most of my lower back. Sometimes, though, the pain deviates from both of these descriptions.

 

Without looking at a calendar or an MRI report, I can list off the top of my head everything I have done in the past three and a half years to try to relieve this pain—five MRIs, a CT scan, countless X-rays, six specialists, two chiropractors, two injections, and one unsuccessful surgery—including the dates on which most of them took place. But, despite my three and a half years of familiarity with this injury, I cannot explain how it physically feels.

 

Three years ago, I spent my time training for the sport I loved, pushing through the pain of conditioning and doing everything I could to prevent the pain of injury. Now, I spend my time catering to physical pain, altering my movements and avoiding certain motions altogether. I prepare for each doctor’s appointment by obsessively practicing my story—the words I’ve carefully picked to best convey how the pain feels—in my head. I brace myself for the disappointment of watching yet another medical professional fumble for a diagnosis. And I desperately hope for the opposite: I hope that one of these appointments will lead to definitive answers. I hope to one day again cry tears of relief like those I cried the day I believed in the miraculous powers of hip surgery.

 


This piece was originally published in The Medical Humanities Journal of Boston College, Volume 3, Issue 1, Spring 2017.

 

 

Evelyn Caty is currently a sophomore at Boston College majoring in Biology and planning to minor in Medical Humanities. She works as an EMT for Boston College Emergency Medical Services, and hopes to pursue a career in healthcare in the future.

 

 

 

 

 


Learn more about the Community Voices and discover more empowering health stories here


 

 

 


HealthStoryCollaborative.org   I   Design by Lyve Media