My mysterious symptoms began when I was 11 years old.  I liked to play soccer, create art projects, and ride bikes with friends to White Hen to buy candy.  I was the student council class president.  I was also as pale as a ghost, barely weighed 70 pounds, and continually missing school because I was sick.  High fevers, headaches, and chills—that was my deal. The pediatrician repeatedly told my parents, not me, that I had the flu.  After almost a year of recurring flu, my parents wondered if I was being misdiagnosed and sought a second opinion.   I remember being nervous as I overheard phone conversations my mom was having, asking friends for pediatrician recommendations, wondering what was wrong with me.

After one visit, this new pediatrician didn’t think I had the flu, admitted he didn’t know what was wrong, suspected migraines, and sent us to an allergist to do sinus testing.  And so my medical journey began.  From specialist to specialist, until an infectious disease physician referred us to a gastroenterologist for a colonoscopy and, there, my atypical presentation of Crohn’s Disease was discovered.  Crohn’s Disease causes inflammation in the lining of the digestive tract, it can be painful and debilitating, and while there are therapies to reduce symptoms, there is no known cure. 

 By the time my Crohn’s was diagnosed, I’d missed a ton of 6th grade and the one month session of overnight camp that I’d already packed my duffle to attend: T-shirts, shorts, sneakers, swimsuits, beach towels, extra long sheets for the bunk beds, tennis racket, cassette player walkman and headphones, berry flavored lip gloss, and carefully selected stationery to write friends and family at home.  I remember the morning of the camp send-off.  It was a warm, clear, sunny day.  I went to breakfast at McDonald’s with my mom, my younger brother, camp friends, and their parents. Then, we all went to the camp bus stop at the local high school.  While my brother and my camp friends loaded the greyhound buses, buzzing with excitement and nervous energy about spending a month away from home, I stayed back with the parents and waved goodbye as they drove away.  Since we were surely going to figure out “what’s wrong” soon, I planned to go to camp late.  I should have known when I started taking out “just one shirt” from the royal blue duffel bag on the hallway floor that I would soon be unpacking the entire bag.  That summer I watched the fun from the sidelines at home.  Through letters from friends, I heard about camp sneak-outs, gross cafeteria food, and which boys the girls liked.

 Twenty-one years later, now 33 years old, I am just beginning to realize the impact living with Crohn’s has had on my life, the force it has been in shaping my identity.  Watching the fun from the sidelines, as I did on that summer day when the camp buses drove off without me, is a metaphor for how I spent a lot of my time growing up.  Beginning at age 12, I needed to take medication three times a day.  Staying healthy meant restrictions in my diet.  No carbonation, no fake sugar, no drinks from a straw, no chewing gum, no popcorn, no greasy food, no, no, no...  Living with Crohn’s meant no drinking, which meant when friends began experimenting with alcohol, guess who was always stone cold sober and, as soon as I turned 16, the perpetual designated driver?  Me.  Then in college, everyone drunk, having fun, enjoying life.  Not me.  All nighters?  I couldn’t do it.  I stayed up most of the night with my boyfriend who was in town during the fall of freshman year and I ended up in the hospital the next day with a high fever and chills. I was left behind when my parents and brothers vacationed in Mexico when I was in college.  They didn’t take me because they didn’t want me to get sick from the food or water. To be fair, my parents planned to travel alone, but my brothers wheedled their way in on the trip.  Even though I asked to join, I was told “no.”

 The thing is, the missed opportunities for fun, the regimented lifestyle, and the premature responsibility, none of that includes the actual medical interventions: The surgeries, hospital visits, blood tests, IVs, colonoscopies, physical exams, medications, allergic reactions to medications, blah, blah, blah…  While I have a difficult time remembering my medical experiences in their entirety, I do remember certain pieces vividly.  I remember being in the hospital, a male African nurse trying unsuccessfully to put an IV in the top of my skinny little left hand.  I was sitting in a chair next to my hospital bed.  He was standing over me in his scrubs.  I felt helpless, paralyzed with pain and terror.  That was probably close to 20 years ago. A million times since then, I’ve been poked, without flinching.   I worked in a Neonatal Intensive Care Unit; I’ve seen blood, guts, vomit, and babies who are no longer living.  Yet, if I’m in a medical setting and hear the voice of a man with an African accent, I stop dead in my tracks and feel like my heart has momentarily stopped beating. 

 In every medical experience since that fateful IV, I plowed ahead—strong, focused, determined, and without complaint.  I pushed my body to the limit, training as if for an athletic event, but really the event was life.  If my doctor said six weeks post surgery I could begin more intense physical activity, on the 6-week mark I incorporated jogging into my walks, turned jogging into running, and soon was back where I started or stronger.  I’d puke in the trashcan on the side of my high school’s track after running just one mile before evening tennis practice.  Even though I can run for miles in the morning on an empty stomach, I couldn’t run after having eaten breakfast and lunch.  My digestive system wouldn’t allow it.  I coordinated with college professors to have coursework sent to me while I recovered at home from surgery my junior year.  I went to the gym to walk on the treadmill during the polar vortex because I needed to get my legs working again.  I went to yoga when my hands were numb and did poses on my forearms rather than my palms because I needed to use my body in a positive way.  I needed to feel what it was like when my body was working for me, not against me.  I needed to be in charge of my body, make it do what I wanted it to. 

 My family fundraised for the Crohn’s and Colitis Foundation of America (CCFA) for 15 years and I volunteered for CCFA for over a decade.  I created the Pediatric Gastroenterology Family Assistance Fund at University of Chicago Hospital.  I’m proud that I didn’t allow Crohn’s to stop me from achieving, from leading an active, full life.  I’m proud of my philanthropic endeavors and the ways my family and I gave back to the GI community.  I wouldn’t change any of that.  I just wish I’d stopped for a minute to be more present in my own experience.  By never allowing the space to realize or fully understand that my experience was not typical, I think I did myself a disservice. 

 Several months ago, I started seeing a psychotherapist for the first time in my life, ironic, since I’m a clinical social worker.  I sought this support for a personal, important, yet non-Crohn’s-related reason.  My draw to therapy had to do with me needing to feel alive, to feel passion, excitement, connection, desire, and understanding… to feel whole.  I needed to grieve and I was overflowing with anger.  I felt panicked and sad about what I had missed and what I felt I was still missing.  I wanted to feel really alive, like heart-pounding-out-of-my-chest alive. 

 However, when I began to talk, so much of what I shared came back to living life with Crohn’s.  I couldn’t believe that I’d missed how Crohn’s influenced not only how I navigate my life, but who I am, and how I act.  Here I was, no longer operating in survival mode, no longer dissociating, finally aware of my own body, and my feelings, thoughts, and emotions were pouring out of me like a fire hydrant, burst open, flooding the street.  It was as if my Crohn’s flare during my recent pregnancy and the traumatic delivery that followed had opened the floodgates of awareness of 20 years of experiences of growing up with Crohn’s.

 I had serious health issues while pregnant with my second baby.  Reflecting back, I see that the ailments came on in a fashion akin to that of my initial Crohn’s symptoms 20 years prior.  The “we don’t know what’s wrong with you” experience was similar as well.  The chills, headaches, and fevers during pregnancy paled in comparison to the morning when I woke up with no ability to move any joints of my lower extremities.  None.  My symptoms were a mystery—a blood clot?  MS?  Just Crohn’s?  My world-renowned GI doctor was stumped. “You’re a bit of a black box,” he said.  I sat on the crinkly white paper on the medical exam table and asked, “So what’s the plan?”  My doctor’s response was “We’ll figure something out.”  In my mind, that loosely translated into “We have no freaking clue.”  I was terrified.  It was unclear if I’d: A) Need another bowel resection B) Need to try a new medication that “increases the risk of getting a rare brain infection that usually leads to death” or C) Wait for the doctors to figure something out.  I didn’t share it with anyone at the time, but during that pregnancy, I felt I might die, or that I’d potentially live with a severe disability, never able to go running, do yoga, or play at the park with my kids again. 

 With so many drugs pumping through my body and so much illness during pregnancy, I was also secretly scared that my baby wouldn’t be healthy.  There was nothing to do except hope for a good outcome and wait for delivery.  After 15 hours of un-medicated labor, a drastic drop in my blood pressure, and baby’s dangerously low heart rate, I was rushed to the operating room for an emergency c-section.  I felt the wind blowing against my face as a slew of doctors and nurses raced my bed down the corridor through the automatic doors and into the bright lights.  My heart began to pound, my breath became rapid, tears began to flow, and panic set in.  I was acutely aware of what was happening, yet, simultaneously feeling in an out-of-body-experience.   At the last second, a voice of one of the medical professionals from behind me on my left yelled, “Heart rate’s back up!  Cancel the Crash (emergency c-section)!  Cancel the Resus (neonatal resuscitation)!”  I had a brief moment of relief, but medical distress continued and a c-section followed just minutes later.  While in the recovery room holding my brand new baby, swaddled in the white fleece hospital blanket, wearing a little blue knit hat, I cried.  Not happy tears because my baby was healthy.  I cried because I failed.  My body had failed, again.

 Until now, I have not shared the intimate details of this all-consuming process of self-reflection and self-discovery that began for me many months ago.  I have been scared others wouldn’t understand, that they would judge.  I had, however, confided in Rebecca, a dear friend of mine.  Rebecca is soft-spoken, wicked smart, a talented mental health professional, and knows trauma.  She was also my roommate in graduate school, and has taken me to the ER, stayed with me overnight until my parents arrived, calmly rubbing my legs, my body shivering and shaking with chills, my fever dangerously high.  During one of our many phone conversations, I was teary, struggling, trying to make sense of my life as if I was working to solve a physics problem, yet didn’t have enough information and didn’t know the right equations.  She responded, “Al, this is your journey to find your authentic self.”  I laughed.  Leave it to Rebecca to name this humbling, painful, and often lonely process something so pretty, so succinct… so… accurate.  Rebecca’s description resonated with me. 

 I continue along my journey towards healing, wholeness, and authenticity.  I am starting to integrate the fragmented parts of myself, the decades of living in a regimented, need-to-stay-healthy way.  I’m beginning to acknowledge the medical trauma that my physical body endured as threats to its very being, but to which my conscious awareness was not connected.  I am peeling back layers of emotions I never recognized and feelings I never felt.  I am having revelations about decisions I made and paths I chose.  There is so much.  I can’t contain it in my body and mind anymore.  I need to share it so that I’m not carrying it alone.  As I bring to my full awareness this new, yet old, information, I continue to be stunned.  And each time I find a new piece of clarity along the way, the most interesting thing happens: my body gets warm, yet feels chilled, my lips feel tingly and chapped, and I feel feverish… just like I do almost every single time a Crohn’s flare is beginning.  

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.

Chris is a 38-year-old Ph.D. student who spent 10 years struggling with and fighting against his psychotic illness. His condition has been hard to diagnose — it’s been characterized as Bipolar and Schizoaffective Disorder at various times. Regardless of the specific diagnosis, the bottom line is the same: Chris has a lifelong mental health condition. He hears voices, and has suffered from paranoia, depression and mania along the way.

His symptoms started when he was a 25-year-old grad student in New York City. Before that, according to his mother, Eileen, he was extremely high functioning — an excellent student, an athlete and a friend to many. She would never have suspected that her son would become ill. But when he grew paranoid and started acting erratically, Eileen began to worry. Ultimately, when she realized how sick her son had become, she knew she had to act. She quickly learned how difficult it is to get help for someone who is mentally ill but over the age of 18. Eventually, after multiple frustrating and unsuccessful attempts to get Chris into treatment, she was told “you need to find three strong men who love him, and you need to go get him, and you need to take him to a hospital,” and this is what she did. Eileen’s story highlights the challenges of navigating the mental health system and of accepting and ultimately embracing her son’s medical condition.

These days, Chris says he is in a different and better place. He has accepted his illness and has learned to manage it with medications, therapy and his support systems. Like any chronic condition, it requires constant monitoring, but he feels equipped to handle the ups and downs and he has become quite skilled at recognizing his symptoms and titrating his medications in response. He is now a Ph.D. student at the University of New Hampshire’s Natural Resources and Earth Systems Sciences program, where he is integrating environmental economics with his background in environmental sciences and engineering. He is engaged to be married and will soon gain a step-daughter. Though his illness complicates his life, he has learned to live with it while maximizing his happiness and productivity.

Unfortunately, and despite much talk to the contrary, mental and physical health problems are treated very differently in our society. We marginalize the mentally ill, and often fail to see the individual underneath the diagnosis. In so doing, we make it hard for such individuals to seek help and to move forward.

Why this double standard? Why the stigma? For many of us, it is easier and less scary to imagine losing physical capabilities than it is to imagine losing control over our mind, even temporarily. In fear, we distance ourselves and see the mentally ill as “other”. This distancing is detrimental on an individual and a societal level. Instead, we should listen and try to understand, and focus on our similarities instead of our differences.

Originally published on WBUR Commonhealth Blog, February 22, 2013

Resources:

To learn more about bipolar disorder, visit

http://www.mayoclinic.com/health/bipolar-disorder/DS00356

http://www.nimh.nih.gov/health/topics/bipolar-disorder/index.shtml

To find information or support for yourself or someone you care about, visit

http://www.dbsalliance.org/site/PageServer?pagename=education_bipolar

For resources focused on families or friends of those suffering from bipolar disorder:

http://www.heretohelp.bc.ca/workbook/family-toolkit

http://www.helpguide.org/mental/bipolar_disorder_family_friends_support.htm

To listen to more stories of individuals living with bipolar disorder, visit

http://www.nytimes.com/interactive/2008/07/16/health/healthguide/TE_BIPOLAR_CLIPS.html?ref=healthguide&_r=0

In August of 2012, Charlie Atkinson was bitten by a mosquito in the garden outside his home in Cambridge, Mass.

From that bite, against the odds, he contracted West Nile Virus. It nearly killed him.

Charlie was in a coma for more than a week, paralyzed in his left arm and right leg. He spent more than 400 days total in two hospitals. He is still recovering.

Before the fateful insect bite, Charlie, married, with four children and nine grandchildren, was incredibly active. He was an avid tennis player, a self-taught pianist, an educator and entrepreneur who started numerous companies. West Nile Virus changed that life.I met Charlie, now 78, on a snowy December day at his home, now retrofitted with a wheelchair ramp and a stair lift. We spoke in the sunny dining room, which has been transformed into a bedroom, complete with a hospital bed and Charlie’s ventilator equipment (he has a tracheostomy and is on the ventilator at night). Charlie lay propped up on his pillows as we spoke, and his warm handshake and bright eyes made me feel right at home.

A self-described “Just Do It” guy, Charlie fought his way back from near death with amazing determination. He surpassed the predictions of the medical community and has continued to make progress: he can now get around with a roller walker and even take steps on his own with a cane.

But beyond his physical comeback, Charlie’s story is also about learning to be a smarter patient; questioning the conventional medical wisdom and seeking out health care providers who are truly compassionate.

West Nile Virus is an arthropod-borne virus (an arbovirus), most often spread by mosquitoes between the months of June and September. It has been found in 48 states (all but Hawaii and Alaska) and in the District of Columbia. It was first detected in North America in 1999 and has continued to spread since that time. In 2013, the CDC reported 2,374 cases and 114 deaths.

With an incubation period of 2-14 days, only one in five people infected will develop symptoms, most commonly fever, body aches, joint aches and other relatively minor ailments. Less that 1% of infected individuals develop serious and at times fatal neurologic illness, including encephalitis and poliomyelitis, like Charlie. While the odds of serious illness are low, the consequences can be devastating. Without any viable treatment options or a vaccine, prevention is essential.

West Nile isn’t something we typically worry about, but after hearing Charlie’s saga, I know I will be more conscientious about covering up, applying mosquito repellent and staying indoors during peak mosquito hours during the summer months.

More importantly, Charlie’s story has taught me a lot about the power of a positive attitude in healing. In coming to terms with his lasting physical deficits, he also acknowledges that there are some things he now does better than he did before his illness. For instance, in learning to use his hands again, he feels his piano playing has improved. In his words, “I now hit the notes more accurately than before I got sick.”

Charlie would like to express his tremendous gratitude to the medical institutions where he received his care, Massachusetts General Hospital and Spaulding Hospital for Continuing Medical Care in Cambridge. In his words, “They saved my life and made it worth living.”

Originally published on WBUR Commonhealth Blog, January 17, 2014

Resources:

http://www.cdc.gov/westnile/index.html

1-888-246-2675 is the Centers for Disease Control and Prevention information helpline for the West Nile Virus and is open 24 hours a day. It is also available for Spanish speakers (1-888-246-2857) as well as those who are hearing-impaired (1-866-874-2646).

By Leah Meyer

As a social worker at Massachusetts General Hospital in Boston, Sandy often works with young adults who receive potentially life-threatening diagnoses. “I think it’s absolutely jarring”, she reflects on the experience, though not solely in her capacity as a provider. Sandy was diagnosed, herself, with bilateral breast cancer when she was 35.

That first year included bilateral mastectomies, two different kinds of chemotherapy, and radiation. Then followed 15 years of hormonal therapy, so “technically”, she states, “I didn’t end treatment until a little more than a year ago.” Though cancer doesn’t affect her day to day existence anymore, it has certainly not disappeared from her life. She refers to it, wryly, as “the gift that keeps on giving.” She still sees the oncologist every year and waits anxiously for the results of her annual blood tests, and her history as a cancer survivor has forever shifted her self-perception and the way that others perceive of her.

When reflecting on her own treatment, Sandy thinks of the work she does with people in recovery from addiction, citing the value of the “one day at a time” philosophy prominent in 12-step treatment models. “I really took my cancer diagnosis and took life a day at a time…I think I was already living that way in part because of the work that I did,” she recalls, but cancer made this way of life even more pressing. Early in her diagnosis, soon after completing the most aggressive stage of her treatment, she remembers that she stopped saving in her 401K. “In part”, she says, “because you wonder, am I gonna be around for retirement?” She wanted to spend her money, to go on fun trips and do the things she had always dreamed of doing. Nowadays, with the fear of recurrence less of a constant in her mind, she has shifted her perspective slightly. “I have to make plans for tomorrow, but I have to live in today.”

And so it comes back around, her experience in return informing her work. “I think it’s actually helped me be a better social work provider because I know both sides...you know what it’s like.” She urges providers not to make assumptions about patients and their priorities, as she herself experienced when preparing for her own double mastectomy. Sandy, who is a lesbian and an accomplished athlete, recalls that one of her doctors made a comment on how the surgery would give her the “athletic body” that she had always wanted. “That was what I wanted? No,” she corrects, “I’d rather have my boobs.”

Some of the memorable lessons Sandy holds close required a different kind of strength from her usual persistence and fighter’s attitude. As an example, she remembers attempting to tackle a strenuous ropes course as part of an Outward Bound community building activity with her breast cancer support group while in the midst of treatment. Always one to try the hardest route, she fell her first time through, but she got up and tried again, this time taking a gentler approach. “Sometimes the easier way is the better way,” she realized, and she has carried this lesson forward.

She has found the humor in her experiences too, believing that “you can do stand-up comedy about some of the things” that cancer brings along, telling the story of a prosthetic breasts mishap on the golfing range. And there’s always new material. You have to keep laughing.

As for advice to others navigating similar health challenges, Sandy says “don’t let it stop you.” She acknowledges that you may have to “accommodate” the cancer, but you can (and must) keep going. “You can have aggressive cancer and aggressive treatment and still get better,” she reminds us. Also, she encourages people undergoing treatment to identify what kind of support is helpful and to seek it out. Personally, she finds the hushed, knowing prompts of “how ARE you?” annoying, but knows that some people like to be asked. “Whatever works for you, teach your friends,” she urges, “find community.” Finally, and perhaps most importantly, “try to celebrate each day.” Some days, Sandy remembers, “I was miserable, I was sick as a dog. But I still tried to put good things in each day no matter how crappy I felt, and that made it easier to get through.”

Dr. Annie Brewster, a Boston internist and founder of the Health Story Collaborative. Leah Meyer is an intern with Health Story Collaborative and a student at Yale College.

Spring 1997

I eye up the worn and tattered catcher’s mitt 20 feet ahead. It’s a warm May morning and the elementary school bus is coming down the street in 10 minutes. But, more importantly, baseball season is finally here. Mom is down in the catcher’s stance, “Fire it in here!” she shouts and then grins at me as I start my wind up. I pull my gloved hand up to my face and tuck my right hand in, resting the ball in the heel of the glove. I take a short step to my right and shift my weight slightly over my right foot. I swing my left leg up high and, pushing off my right leg, send everything I’ve got into the pitch, whipping the ball at mom, as she squats in the grass with the mitt held open wide. The ball smacks into the glove’s weathered pocket with a “Crack!” “Isn’t that the best sound, And!?” she exclaims, firing the ball back to me and readying herself again. We have to get 10 pitches in before the bus comes. There is no secret to being good at something. You just have to love to practice. That is her philosophy. Now it is mine too.

January 2011

It’s now junior year of college and my morning routine has shifted away from baseball. Now I get up, eat oatmeal, and review notes before class. Fewer “heaters”, a lot more books, but the same philosophy: love to practice, love to learn. I write frequently in the journal I keep on my computer. So far it is mostly ramblings -- on my dying faith in the Catholic church (what’s the point of God?), on my breakup with my high school girlfriend (what’s the point of love?), on my fascination with cell biology and chemistry (what’s the point of studying anything else but the pure molecular basics of life itself!?)

In this moment, my relationship with cancer is so ordered and neat and sterile. It is a series of PowerPoint presentations in air-conditioned classrooms. A set of logical experiments, producing clear data from which succinct conclusions are drawn. It is graphs and figures and tables and genes and proteins and signaling pathways. I have a poster outlining all the known cellular pathways that contribute to cancer on the wall beside my bed. Cancer biology is what I do, not something I fear.

April 2011

That ordered, neat, sterile, intellectual relationship with cancer collided with the powerful, unpredictable, emotional, force of real life on a beautiful spring morning later that semester.

I am home for the weekend from school, with my mom. Our morning ritual is to have a cup of Irish breakfast tea together. Always with a splash of evaporated milk and a half teaspoon of honey. We started this in high school when she was teaching 9th grade and I would hop a ride to school with her each morning.

I made my cup and walked out to the back porch where she was sitting, her mug beside her, at our small wrought iron table. If that table could talk, it could tell the entire history of our family. It has sat on the cracked slab of concrete we call the back porch ever since we moved in on Evelina Road

“Good morning, Andrew” my mom says as she smiles and looks up at me from the crossword puzzle, looking not quite her usual chipper, enthusiastic self.

 I don’t remember exactly what we talked about at first, but, eventually, she said to me, “I’ve got some news, And. I went to get this thing on my leg checked out and they said I’ve got some bad cells.”

 To me, immersed in a Cancer Biology class, bad cells equal cancer. No need for further description. I just took an exam on this very topic.  How ironic is that? “Bad cells” stop doing their jobs. “Bad cells” disobey orders. “Bad cells” exhibit the 6 characteristics of cancer, which I can hardly remember in this moment.

“What did the path report say?” I ask. “What kind of cells? How fast are they replicating? What stage is it?” In this moment of internal turmoil, I grasp for what is familiar to me – the science and the cells -- rather than looking for what might be helpful for my mom. She recognizes my angst and -- despite the fact that she received the diagnosis, she will receive the treatment, she will be confronted with  her own mortality in the coming weeks-- she opens her heart and comforts me.

June 2011

You would never find mom inside on a sunny day. She’d be ticking off miles walking all over town with her best friend, hitting the tennis ball with a fellow teacher, or kneeling in the garden behind the house, back bent, hands covered in mud, transplanting some black-eyed Susan’s or pulling weeds. But on this “glorious summer day”, as she would most certainly have proclaimed it, there she was, inside. She was curled up with blankets in her bed, her hair, frizzled and wild, pushing out over the covers. She was now a few weeks into interferon treatment for her cancer. On the days of her infusions, she collapses into bed with chills and whole body aches. It’s jarring seeing my mom so visibly weak. She could not help the shivering. She could not bite her lip and just power through the aches. The interferon was pummeling her and I hated the medicine for doing that, even though I knew, theoretically, that it was helping. I went into the room and wrapped my arms around her without anything to say.

Eventually she completed the treatment and the chills and the aches stopped. The scans came back “clean”; but that might have been the easy part: getting cancer off the scans. The real hard part is getting it off your mind. Mom told me that the greatest challenge after treatment is not becoming obsessed that every headache or cold, sharp pain or little rash is a sign that the cancer is back.

For the rest of us, at least superficially, things seemed to be “normal” again. We didn’t really talk about cancer. We didn’t use the term “remission”. We just assumed “cured.”  It was logical. Plain and simple. Mom had cancer. Mom endured the treatment. Mom beat it. Like we knew she would. We could all move ahead with our lives now, thank you very much.

April 2015

Until last spring, April 2015. She went in for her yearly PET scan. She came back with “findings” that needed to be explored with a biopsy. “This really is not happening,” I remember thinking to myself, “Why not?” came an internal reply.  The worst was confirmed: metastatic melanoma, stage IV cancer (“That’s the last stage,” I remember telling my older brother when he asked me how many stages there are).

September 2015

Now I’m in the first year of medical school. Tomorrow we will be talking about melanoma in class. I am doing the reading to prepare and I come across the survival statistics. Odd that I have never actually looked this up myself before. The five-year survival rate for a person with stage IV lung metastases is 17%. I stare at the accompanying figure, a Kaplan-Meier survival curve. Looking out at the 16-month marker on the x-axis: not many survivors. Were all those dots on the chart really someone’s mom or dad, or brother or sister? I keep reading, “Malignant melanoma is the cutaneous neoplasia with the greatest mortality rates and one of the malignancies with the highest potential of dissemination. The prognosis of patients with metastatic melanoma is grim…” Time for a shower, I think,. Enough studying for tonight. I walk down the hall of our dorm in my sandals, head straight to the showers and turn the water on hot. I get in and stand there for a few moments, letting the water pour over me. “The prognosis is grim,” I think to myself, “17% survival at 5 years.” “Shit,” I whisper. I am hit with this longing to see my parents and be with my brothers. I picture my mom’s funeral. My brothers carrying the casket. I picture my dad speaking at the wake, thanking everyone for coming. There’s my mom’s sister and brother. There’s her best friend. There are her nephews waving goodbye to her. I picture my mom on the back porch with a cup of tea, looking toward the sun. The hot water runs over me and I weep. I cover my face, but what is the point? I can’t stop it; the tears flow, falling off my face, joining the water droplets from the shower, crashing into the tile and falling down the drain. I want to follow them down there.

September 2016

I pull a mask over my face, slip a pair of gloves on while I make my way over to the metal table to join my classmates, who are peering over specimens while a pathology resident asks a question: “What do you guys think this person died of?” I pick up the cold tissue in my hands. Definitely a lung, though it is collapsed now, greyish-tan color – bland, lifeless. The tissue is dotted by small dark specks, some as small as a pencil’s tip, others the size of its eraser. I roll these little specks through my fingers. They are smooth, but irregularly shaped. They are hard and stick well to the tissue. They are uniformly black. “Is that from smoking?” a classmate ventures. “No, but good guess!” the resident replies excitedly, “That black stuff isn’t from particulate matter. Think about what cells can make that sort of pigment.” Another student speaks up, “Skin cells. Melanocytes produce pigment!” The resident, who nods in approval, concludes, “Yes, this patient died from metastatic melanoma.” The group shuffles to the adjacent table where diseased kidneys await us. I stand with the melanoma lung in my hands and roll my fingers over the small bumps again and again.

As a medical student, I’ve learned enough to fear diseases like cancer, by studying their pathology, watching tumors excised from abdomens in the operating room, or as I did recently, holding the nodules of metastatic melanoma in my hands.

But as a son, the disease is not so much what I’m afraid of…loss is. The cellular morphology isn’t scary. Even the scans aren’t that scary. The thought of being without someone irreplaceable, like my mom, is what is terrifying.

Sometimes I try to live only as the medical student, sometimes only as a son. This experience, I’m learning requires both, and, as a great poet has said, the only way forward it seems, is to live like the river flows, carried by the surprise of its own unfolding.*

* John O’Donohue

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Andrew is a second year medical student at Harvard Medical School.

A tumor.

The first time I noticed “It,” I was looking at my reflection in a dingy bathroom.

“Hello,” It introduced itself, “I’m new, but I’ll be here awhile.” It was a lump on my neck, found only because it cast a shadow.

“Do you have a name?” I asked, hoping in vain that this time It would answer. Silence, as always, would follow. Just the steadiness of my heartbeat, pulsing blood through my veins—through It, feeding It, helping It grow. Out of my control, yet within me.

I bargained with that silence as if it would have made a difference. “If you go away, I’ll go to the gym more. I’ll eat fewer desserts.”

Still silence.

“I’ll work harder in school. Go to the gym EVERY day. Eat no dessert.”

Still silence.

But the bargain felt complete, and the silence less threatening, and Its presence retreated back into the corners of my brain. I carried on, hating the body that put me in this position. Feeling helpless to do anything, yet determined to do something—if I couldn’t control It, I’d control everything else.

This cycle repeated for months. Until the first time It broke the silence.

“My name is Danger,” It said, “and you should fear me.”

“What kind of Danger?” I asked. But my translator, the doctor, didn’t know. It wasn’t speaking clearly yet. The doctor needed to make a personal visit. Needed to cut It open and confront It. Surgery.

So It had a name. A vague name: Danger.

But I was no closer to knowing what kind of Danger. An urgent one? A false one? “It’s most likely nothing,” the doctor said. The visit would be a formality, just to confirm this.

The Danger’s silence was deafening. I went back to bargaining, desperate for more control; more information. My bargaining had me eating too little, working too hard, and stressed out about how to act ‘normal.’

I looked like I had it all together, people later told me. Wrong: I was a sad and anxious human.

In the midst of these bargains, I learned about cultivating a gratitude practice while scouring health blogs for diet tips. Be grateful, and happiness will follow, the experts said. I wanted to be happy.

So I would wake up 5 minutes earlier and list what I was grateful for. My family, my friends…the usual. Then 5 minutes became 10, and I listed more things: the opportunities to attend college, and to live near the best hospitals in the world.

One morning, there was something new on the list. I hadn’t planned it. It just slipped out unexpectedly:

“I’m grateful for my body.”

What?!

My body, inhabited by Danger, my elusive enemy? My body, the home of that tumor? No, that can’t be right, I told myself.

But then I thought about it. My body lets me run and jump and sing and laugh and love. My body was fighting back against Danger and all his pervasive silence.

Okay…maybe I could be grateful for my body.

It became my mantra. Even on days when I didn’t believe it, I expressed gratitude for my body. In the beginning, that was most days. But I had believed once, so I knew I could believe again.

The next time Danger broke his silence, it wasn’t good news. The visit that my doctor paid didn’t confirm It was “nothing.”

 “I’m sorry, but it was cancerous.”

So that’s your real name. Not “It.” Not “Danger.” Cancer.

But the name, Cancer, was liberating. While fog had once obscured the path to health, now I had a flashlight, and a map. Now I knew my enemy. How to fight him. How to beat him.

I think that I’d known all along that It was really Cancer. It hadn’t felt like a friendly tumor when I first found it. It felt wrong, full of dark energy. Panic and anxiety greeted me whenever I examined It in the mirror.

But now that it’s all over, pride greets me when I look in the mirror. My scar is a daily reminder that two surgeries and radiation sent Cancer packing. My body fought back. She wouldn’t let the worst happen because she was strong and full of love. Now, when I run or jump or sing or laugh or love, it’s a victory lap.

Cancer wanted to rob me of fully embracing life, but I didn’t let it. There wasn’t one specific moment when I realized that I had really started living; there were lots of small moments that added up:

Like on the day I was three months clean, and my friends surprised me with an enormous card telling me how proud they were and how much they loved me. That was the day I realized that I didn’t fight cancer alone for a single moment.

Or when I was eight months clean, when I walked out of class at the Sorbonne and realized I was living out a childhood dream, to study in Paris. That was the day I realized that I should continue to dream, because those dreams could come true.

Or when I was sixteen months clean, and the leader for a retreat I had agreed to help with kept poking just a little bit more than anyone else had at my feelings about cancer, and I admitted out loud for the first time that I had been scared. That I had pretended I wasn’t so no one would worry about me. That was the day I realized the importance of being truly vulnerable and honest with myself about my feelings.

Really living means being aggressively friendly to friends new and old. It means saying yes to pizza AND fries, because life is too short to choose. It means running faster, jumping higher, singing louder, laughing longer, and loving deeper.

Really living means I don’t bargain with the silence. I fill it with life.

Kitty Sargent is a recent graduate of Boston College, where she studied Political Science and French, and served on the executive board of Real Food BC, a food sustainability group.

Born with a benign tumor (or “hemangioma”) on my left cheek, I attracted a great amount of uncomfortable attention. This attention influenced the way in which I saw myself. I often felt that my blemish prevented me from being what society considered “beautiful.”

As a girl entering her teenage years, I could not help but worry about the ways I would be viewed by others, especially by boys. When I expressed these concerns to my mom, she offered a potential solution that would require no words – a stern stare back would do the trick. I would simply be giving others a taste of their own medicine. While my voice was hushed in hopes of diverting attention away, it quickly became apparent that even this solution would not work. My work illustrates this struggle and my resulting frustration as I felt that I had no control over how people looked at me. On the contrary, it began to feel like others had more control than I did over how I perceived myself.

My comic was inspired by Miriam Engelberg’s graphic narrative, Cancer Made Me a Shallower Person, in hopes of showing rather than telling my experience with staring. My piece ends with my unsatisfied self confronting the reality of living with an abnormal mark on my face. It is difficult to change the way society views people who possess different characteristics. Such a societal approach has the power to negatively impact the illness experience of many individuals living with various disabilities, disorders, and diseases. As I matured throughout my experiences, however, I came to learn that a greater triumph can result in the way I react – by not letting the stares of others reflect onto the person I saw in the mirror. With this perspective I became a more confident individual who appreciates the differences that other people possess.

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Karolina Mieczkowska is a senior at Boston College majoring in Biochemistry and minoring in Medical Humanities. She plans on pursuing a career in medicine as a physician.

“Kate, I just got a call from Jane. She wanted to know whether we wanted to go…wanted to go to…”

My mother closes her eyes and scrunches her brows together as she says this, trying to find the word in her brain.

I ask, “Whether we wanted to go to church with her?”

As my mother then thanks me, I try to hide my unease.

Such exchanges – in which my mother forgot a word or an entire idea, and I completed her sentence – began when my mother was only 51 years old and I was a sophomore in high school. By the end of my senior year, my mother's condition had worsened to the point where she could not comprehend my daily notes, which only said when I would return home from school.

My mother emotionally changed during this time as well. She often became angry, especially when she attempted to deny her memory issues. Sometimes, though, her denial gave way to sadness, as she accepted her new truth: she had the memory struggles of a much older woman.

Both of these emotions – anger and sadness – underline how difficult my mother's memory problems were and still are, for her and for my whole family. We all struggle. We watched her undergo a staggering change – from an exceedingly intelligent woman who graduated magna cum laude from college to one struggling to read.

Despite these clear symptoms, help was difficult to find. At first, my mother attempted to empower herself and take action. She reached out to a local health case management organization that accepted her state insurance. This facility provided her with samples of trial medication to hinder the progression of her memory loss. Struggling just to pay rent, we could have never afforded these medications on our own.

My mother regularly took her medication. She did crossword puzzles. She felt hope – until the organization’s medication samples ran out. She came home from her appointment that day and declared that she would never go back.

Ultimately, my mother would need to visit a geriatric health center specializing in care for the elderly in order to get a formal memory examination and brain imaging. With state insurance, we waited for months to get an appointment. It took a full three years to get a diagnosis, though we were grateful to have the costs covered.

In the end, my mother was diagnosed with Frontotemporal Dementia (FTD), an illness I had never heard of before. This disease has no clear causes or risk factors, except for possible genetic inheritance, and no known treatments. It causes shrinkage in the frontal and temporal areas of the brain, often at a young age (between 40 and 70 years old), resulting in emotional liability as well as memory problems. As in my mother’s case, it is often initially misdiagnosed as mental illness. This is not necessarily the physicians' fault, however; FTD and certain psychiatric disorders manifest themselves in remarkably similar ways. This is a small reminder of how health challenges connect us all.

Once my family and I learned that my mother's true illness was FTD, we were overwhelmed. We were shocked by the devastating emotional changes that would come with FTD. We also had to learn how to navigate the modern health and legal systems. As my mother became increasingly dependent, and we focused on issues such as paying her bills and finding her a safe place to live, we had to simultaneously “prove” her disability in court. Now, my father has acquired the title “Conservator of Person” so that he, with input from me and my siblings, can make decisions on my mother’s behalf. This isn’t easy.

My mother does not recognize that she has memory issues. Without realizing it, she often acts like a child. She cannot participate in society, or even in our family community, like she used to; she cannot read the newspaper or even a simple word, and she lacks the emotional stability to maintain relationships. She craves attention from others, though, and will even have temper tantrums when she feels ignored. I have watched my mother stomp off to her room, sulking, many times.

One of these temper tantrums actually caused her first adult daycare center to dismiss her. The employees at the center felt that my mother agitated other clients against the caregivers. Perhaps she did, unintentionally; my mother does quickly become anxious and upset when she is not actively engaged in an activity or when her day deviates from routine.

She dislikes boredom and harbors a longing to be helpful – an impulse which often goes unrecognized by society. My mother is actually quite eager to perform simple tasks, like setting a table. She loves to feel usefully engaged and be an active participant in chores or activities.

I am grateful that my mother can actively participate in this way at her current daycare center. Here, she feels safe and full of purpose. My mother loves to attempt to help other clients. She often talks with them when they feel sad or upset, and this truly helps other clients to manage their emotions. My mother also participates in art therapy, pet therapy, and simple sport games, along with other clients. She really enjoys the social, recreational atmosphere that the center offers her.

At this center, my mother's caregivers provided her with a community and a purpose. They support her and treat her with compassion. To them, my mother is an adult woman – which seems to be a simple thought yet is actually a profound affirmation of a dementia patient, who is often stereotyped for immature behavior and simplicity. Dementia patients are adults, although they might act like children, and they deserve to be treated as such. Surrounded by such positive treatment and respectful attitudes at her daycare center, my mother has been happy in the past few years.

But with the passage of time, she now needs more intensive care. She struggles more, internally and externally. Her emotions have become quite explosive and unpredictable. Daily activities, such as bathing or brushing her teeth, have become lengthy and complicated exertions. My mother's daily hygiene routine is a particularly potent source of frustration and stress for her, and this exemplifies how her internal and external conflicts are quite connected. Dementia has affected my mother's physical abilities and personality, as well as her memory. With dementia, and perhaps with illness in general, the physical and the internal are often intimately connected.

This connection between the physical and the emotional can make care-giving a complicated endeavor. My father is currently struggling to completely care for my mother, when she is not in adult daycare. My mother definitely needs full-time health services, but they are difficult to secure. Because of the high demand for a spot in a specialty care facility, immediate placement is rare unless it occurs in in the aftermath of a hospitalization. My mother has been on wait-lists at multiple long-term care facilities for more than two and a half years. For now, I am incredibly grateful that my father and her adult daycare center are able to meet most of her changing needs and desires.

My family’s experience with FTD has changed me. Now, I am committed to advocating for greater health resources for all, especially the most marginalized. While my mother's illness is rare, I hope that my family’s story encourages others to work for broader change. I hope others contact legislators about extending health care access for patients and caregivers.

More generally, I hope my mother's story can also increase awareness that different kinds of dementia exist. Some dementia patients, such as my mother, can remain quite active participants in particular communities. Though individuals struggling with dementia have gone through much personal loss, they may retain their desire to be involved and help others. They can help others, and have much more to offer than one may initially think – if their community will accept them.

As a student in college, I imagine the possibility of experiencing dementia myself in the future. I know what it is like to worry about the shortness of life in the face of medical difficulties. In this way, I feel I am connected to many others – to other students and to other individuals in general – who experience and observe a myriad of health challenges every day. Despite the fragility of health, we can be conscious of all that we have and try our best to always value and make the most of our time.

Katherine Divasto is a member of the Harvard College Class of 2016 and is a Psychology major.

Dr. Rita Charon, founder of Narrative Medicine, cares deeply about how patients’ stories are told. She believes there are two ways healthcare providers can tell the stories of their patients: with data derived from test results and quantifiable statistics, or with deep understanding of that patient’s experience, derived from generous listening.

Rita observes: “I’m sure many patients have the experience of that first kind of storytelling: ‘They don’t care who I am, they just care what my A1C is.’ But then in the very same place, there’s this other kind, where (a healthcare provider) is not only able to but is rewarded for really coming to understand how to listen to the deeply personal, affective, emotional aspects of not just living, being sick, and of dying.”

But how can providers incorporate this second kind of storytelling into their daily medical practices? Ronald Schleifer and Jerry B. Vannatta, co-authors of The Chief Concern of Medicine: The Integration of the Medical Humanities and Narrative Knowledge into Medical Practices, offer accessible suggestions for clinicians who want to prioritize their patient’s story in their caregiving.

Changes in how providers offer and patients receive care can start with simple but significant technical aspects of storytelling in healthcare: how trainees are taught to write. Usually, hospital notes begin with a patient’s “Chief Complaint”: “My asthma is back” or “I have chest pain” or “I fell and hurt my back.” Schleifer and Vannatta recommend in their book that in addition to a “Chief Complaint”, providers also ask for their patient’s “Chief Concern” - which is markedly different.

This year, for the first time, Rita asked the four medical students she mentored to do just that, and was pleased to see that they took the task of registering a chief concern very seriously. Even at this quite technical level, it is clear “how much it matters how these young kids - 2nd year medical students - are learning how to tell stories.”

The contrasts evident between the complaint and the concern in the examples Rita’s students recorded struck me as nothing short of poetic:

Chief complaint: “Belly pain.”
Chief concern: “I hope my cancer’s not back.” 

Chief complaint: “Relapse of pancreatic cancer.”
Chief concern: “Is it now that I’m going to die?

Chief complaint: “Shortness of breath.”
Chief concern: “Suffocation.”

Chief complaint: “Shortness of breath.”
Chief concern: “I really don’t want to be in the hospital again.”

Chief complaint: “Transfer from the coronary care unit.”
Chief concern: “I don’t understand what has happened to me.”

Chief complaint: “I was not making any sense and was confused.”
Chief concern: “I want to take care of my grandchildren.”

It deeply impresses me how easy yet meaningful it is to inquire about a patient’s chief concern. It opens up the possibility of a different degree of trust between patient and provider. But just what should students do when they hear their patient’s chief concern?

“Tune in!” Rita declared. “Notice the lived experiences and implications of an illness serious enough to get put in the hospital. And because we (ask about the chief concern) right up at the front, (providers) are able - maybe - to pay attention to the deep existential fears.”

Rita feels real optimism about this technique: “It’s not like the doctors don’t want to do this, it’s just that they’ve never been asked to...” or shown how, until now, through narrative medicine training.

Narrative medicine cultivates the development of foresight, the ability to tune in and pay attention. As evident in Rita’s stories about generous listening and asking patients about their chief concern, it’s sometimes the seemingly small gestures that can make all the difference in how clinicians hear, and care, and practice being with.

But it’s important to remember that caring for patients’ stories isn’t easy. Rita acknowledged the challenge in what she asks her medical students to do: “It’s not just: ‘Oh yeah, don’t forget, get the patient’s story…’” It’s about more than just “getting the story”. It’s about “rolling up your sleeves, and getting yourself in a position of confronting the situation’ the patient lives.” Even Rita admits: “There are a lot of things I learn that I wish I didn’t know.”

I imagine how overwhelmed caregivers must feel when confronting the unsanitized, scary, disheartening reality their patients live. But increasingly, providers are discovering that to bear witness to a patient’s whole story, they can better understand and thereby meet their patient’s needs.

Rita says, when it comes down to it, “You don’t need somebody who’s going to put their hands in front of their face and say ‘Don’t tell me about that...’ You don’t need that. You need someone who will appreciate the magnitude of what you’re talking about. And who can then maybe do something on your behalf.”

We all need our magnitudes to be acknowledged and honored, because we are not only conglomerations of numerical data, we are people with complicated, unique, and profound stories.

More about Rita:

Rita Charon, MD, PhD, is Professor of Clinical Medicine and Executive Director of the Program in Narrative Medicine at the Columbia University College of Physicians and Surgeons. She directs the Humanities and Medicine curriculum for P&S and teaches literature, narrative ethics, and medical interviewing. She also has a primary care practice at Presbyterian Hospital.

TEDxAtlanta Talk: https://www.youtube.com/watch?v=24kHX2HtU3o

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.