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.  

September 1990

In her dream, there was an intruder in the house, a frightening presence. She found herself sliding close to the wall as she tried to become invisible, to find a way to escape. Outside, she saw a group of people standing on the lawn. Her husband was there, her children, as well as friends and colleagues. Several policemen arrived. An officer stepped out of his car with a bullhorn yelling: “Betsy – Betsy! Stay in front of the window so we can see you! Then when we shoot we won’t hit you!”

I pour myself a cup of tea, musing about the dream and the feelings it evoked. I am struck by the way my psyche is working to sort things out. Breast cancer. Ever since that moment of diagnosis, that jumble of terror and grief, my mind has alternated between dead slow and hyper-speed. The mammogram, biopsy, partial mastectomy – events that ripped through my orderly life - only numbed me further to this trauma. Yet this dream had sent a message directly related to my dilemma: should I agree to undergo radiation treatment? As a psychotherapist, I believe in the unconscious. I guess I have to trust its wisdom in putting these images together.

I must get going, for I have to go back to the hospital. As I head up the stairs to change, I experience again that strange sense that has haunted me throughout this time: a sense of profound loss and fear coupled with a feeling of incomprehensible reality. Every day in my office, I hear so many people speak of how difficult it is to take in the enormity of their troubles. I marvel at their stamina, their dignity, their bravery. But I cannot relate it to myself facing breast cancer, for I feel so out of control, so abnormal. My life seems to be passing by me in a series of jolts. It is so difficult to express my feelings, for I am topsy-turvy. I can see my home, my daily tasks, my work, my family. Yet I am separated from all that by the image of a neon sign constantly flashing in my head: I have cancer I have cancer I have cancer. I see a woman walking toward me on the street, and I want to scream out to her, to ask if she has it too. Or I want to blame her for not having it. I look so normal - but nothing is normal, whatever that means.

Scary things tend to happen in rooms that have no windows. Lying on the hard treatment table in the radiation suite I await the “marking up,” the tattooing around my breast that will guide the beam of radiation. Those dots will be mine for life. I stare up at the inane poster of a cute kitten pasted on the ceiling. Technicians move around me with what look like slide rules and triangles in their hands. I am the challenge, they have the formula. While I recline, awaiting their solutions, I distance myself and see this experience as a movie scene: semi-nude woman, one arm carelessly thrown up over her head, harsh bright lights all around. Is this really happening? The staff is kind but impersonal. I envy them their distance from this disease even as I feel isolated by their detachment. They photograph me; I feel like a tumor. Then they tattoo dark blue ink dots in a large rectangle around my left breast - the guide for daily treatment, for 33 times. I worry - my heart is under there.

Before leaving the hospital, I have to meet with the doctor who will be in charge of my treatment. I must sign a release form forgiving them if the treatment causes me irrevocable harm, such as a fatal tumor, or heart damage. And of course, I have to expect to be burned from radiation. Is this really necessary? Can I trust that the treatment won’t put me at further risk for more breast cancer? I feel so cynical about it all and then, suddenly so angry I can hardly contain myself. Rationally I sort of understand all this, but I am no longer rational. Somehow I switch into coping, clench my teeth, sign the form, and leave. Exiting the garage, I am asked if I am a patient. I am not a patient! So they charge me the visitor amount – nine dollars for my one-hour visit. I am enraged and drive blindly out to the street.

I am driving now, back on the same road, still in the same day, heading to my office. But I am not the same. I have a patient to meet in an hour, and I am just going to make it. I feel enormously strained in my heart. Where can I put breast cancer for 50 minutes? I must look so changed; I must radiate fear and anger like a thundercloud. But when I walk into my office I am complimented on my dress… and I open the cancer file in my head and put my experience inside. I turn myself over to my patients’ pain. What a relief. I can do this.

This is the day after Thanksgiving – and the first day of radiation treatment. Am I thankful? I try to put it into perspective; as people have said to me I am lucky; it could have been worse. This will not be as bad as having a mastectomy. That is true…but am I lucky?

Another underground hospital garage, dank and cold. Down, down I drive, watching the clock and worrying I will not be able to find a space. Is that enough of an excuse for not showing up? I find my way to another radiation site in this huge hospital. A nurse leads me to a closet-like changing room. “Everything off from the waist up, dear” she instructs. I am trembling as I hang my clothes in the steel locker. Later, I cannot find the right locker.

As I emerge into the waiting room I surreptitiously scan it. There are eleven people here, all in white hospital gowns like me: they have cancer. There are men, women, and a teenage boy – he has no hair under his Bruins cap. In a wheelchair in the corner, her head wrapped in a scarf, sits a pale young woman, a basin in her lap. No one looks at each other; they simply wait. My shield of denial is crumbling, for the reality of why I am here can no longer be denied. I want to bolt out the door, out of this place of cancer. I do not want membership in this club! I feel devastated, alone in my fear and pain. And I know I must repeat this scenario for six and one-half more weeks.

Again I am driving home, the same road, the same day. A replay flashes through my mind: the treatment room, the enormous radiation machine, the technicians leaving the room while I am radiated, the hum of the machine, a mobile of hamburgers swinging over the table. The hamburgers are to distract the children they treat, who are harder to manage when they are frightened. I am the model of cooperation – I want them to shoot straight.

On the kitchen calendar at home, beside the date, is the number 33. Each day it will go down; as I cross it out it seems more hopeful, one less treatment to go. I call my husband and tell him what the experience was like. It does not feel like me talking to him, for I am in a faraway place. I have this unreal sense again, for to talk with him about what to have for dinner seems so insignificant. Do we still do dinner? Am I still me? What is it I have lost? It is what I have gained that has caused the feelings of profound loss: a new identity. I have a disease. I am a cancer patient. I belong to that club, the cancer club. My normal life is gone.

As I set the table for dinner I trim the tulips I bought earlier. As they are squeaked into their vase, they are still the same. That gives me pause. I take the salmon out of the refrigerator – how many times have I set this table, cooked salmon for dinner? Through the gain of cancer I have lost normal, for living my life, work, and daily tasks at the same time as I endure treatment for breast cancer isn’t normal. Reflecting on this feeling, I see my life now as two parallel tracks: on the left, the usual track of a day, breakfast, work, dinner with my family; on the right, the unusual track - the letters that spell C A N C E R. That image, in all its starkness, captures the feeling. I focus on it as I place the fish in the pan, then have to pause, because the image is changing. Some tiny connections are materializing between those two tracks, some small everyday predictable links that may start to ease this whole ordeal for me. One of these is happening right now – as I’m making dinner for my husband. It’s salmon. Salmon is normal.

Originally published in 1995: Tyson, Elizabeth, 1995. "The Case: Salmon Is Normal." Second Opinion 21, no.1 (July 1995): 35 -37. Reprinted with permission from the author.

Gretchen Hunsberger was first diagnosed with stage 2 pancreatic cancer in 2013, which she successfully treated with radiation and chemotherapy. But fourteen months later in spring 2015, her remission ended when the cancer returned, this time at stage 4.

In June 2015, Gretchen shared her courageous story about deciding to forgo medical treatment and embrace her impending death. Gretchen realized the unparalleled value of community, and how much can be learned from individuals living in Stage 4. She mourned the loss of her vitality, but through mindfulness and meditation practices, experienced joy in the wonders of this world.

Gretchen passed away on August 31, 2015.

Resources:

To learn more about pancreatic cancer, ways to get involved, and sources of support, visit Pancreatic Cancer Action Network.

For inspiration on navigating cancer, explore Bernie Siegel and Mark Nepo's writing.

When Natalie was in college, the ramifications of her eating disorder reached their pinnacle when she landed in the cardiac intensive care unit. Her heart was in severe distress due to the toll that restriction and over-exercising had taken on her body. Though previously she had minimized, rationalized, and outright denied having an eating disorder, immediate attention became mandatory.

After stabilizing in an inpatient unit, Natalie sought residential care at Monte Nido Vista because she has been exposed to Carolyn Costin’s views on recovery from the book 8 Keys to Recovery from an Eating Disorder.

Natalie stayed at Vista from July through September 2014. Transitioning back into life in Chicago proved harder than she anticipated. While Monte Nido believes that everyone can become fully recovered and live a life free of an eating disorder, Natalie’s step-down treatment program in Chicago promoted the more limiting model that eating disorder symptoms can only ever be managed, never fully alleviated.

Nearly one year later, Natalie considers the tricky relationship between her depression, anxiety, and eating disorder, and admits that although she is sometimes inclined to isolate, it never serves her recovery. She reflects on what is gained by being vulnerable, and how much better she feels when she speaks her truth, without judgment. She knows she needs to be vigilantly honest with the people in her life, and to nurture the relationships that are healthy and to let go of those that aren’t. Despite the bumps of recovery, Natalie reminds herself: “I am capable” – truly, we all are.

Currently 23-years-old, Natalie lives in Chicago and is completing her last semester at college, pursuing a bachelor’s in nutrition and dietetics.

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

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

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

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

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

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

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

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

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

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

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

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

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

Resources:

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

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

By Annie Robinson

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

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

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

Paul passed away on January 14, 2015.

Resources:

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

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

Last week, I interviewed Sarah Baker, a Cambridge based writer, mother and independent radio producer, about her recent article, “Unraveling My Childhood Asthma: Did motherhood Cure it?”, published on WBUR’s Commonhealth Blog on May 9, 2014. I was drawn to this article because it so beautifully portrays the complex process of integrating illness and loss into one’s life, and how writing can be a part of this.

As Sarah puts it, writing this piece was like bringing her interior world and her exterior world together in public, perhaps for the first time, and this was a powerful experience.

Read Sarah’s piece, and listen to the audio recording of the interview. Sarah is eloquent, honest and brave. She has lessons to teach all of us.

Stay tuned for her memoir!

Listen to audio here:

Photo credit: Susan Lapides

Transcript of Dr. Annie Brewster's interview with Sarah Baker:

Dr. Annie Brewster: So I'm here today with Sarah Baker, freelance writer, mother and a independent radio producer. I wanted to talk with her about an article that she recently wrote called "Unraveling My Childhood Asthma: Did Motherhood Cure it?" which was published on WBUR's Commonhealth Blog on May 9th. I love this article and I think it really is right along the lines of what Health Story Collaborative is about; trying to harness the healing power of stories, so I wanted to talk to you about the process of writing it and what came out of it. I guess as a first question, I was really struck in reading it by all the different roles that asthma played in your life. It set you apart, it called attention to you in life when you might not have otherwise gotten attention, it brought out "sassy pants" which I loved and it was also a constant in your life in the midst of what was otherwise chaotic. So it served many roles, both positive and negative, it seems. I'm wondering if you can speak to that and the different roles that it played in your life.

Sarah Baker: I agree with everything you just said. I was a kid who went through a lot of trauma early and my body responded in a way that maybe my brain didn't know how to. I couldn't breathe. I think my asthma was a reaction to the stress. My mother had died, we moved all the time, and I lived with all of these different families. That is very stressful. Maybe not being able to say out loud, "I hate this" or whatever my feelings might have been. I wheezed and that was where my stress went, to my asthma. I read Joan Didion's essay, "In Bed," about her struggling with migraines and it made me think about my asthma and I started to write the piece. It was through writing that I began to notice how my asthma had been a constant in my life, how it had been representative of the stress. This is somewhat new to me--where I've thought about my asthma from this perspective, as a forty-six year old. As a child I was just trying to survive.

Annie Brewster: I'm really interested in what you said about that you never really consciously thought about this until you started to write about it. I'm really fascinated with the process of storytelling and how that sort of helps move somebody from one place or another. So, can you speak to the process that you went through in writing this and how that helped you and what it meant then to put it out there in a public way and get feedback on it; what that was like for you and what did it take to get to a place where you felt ready to take that on as a writing project?

Sarah Baker: I remember a number of years ago when I started writing, a friend of mine who is a successful writer said, "write what's raw" so I always try to write what hits a chord in my heart. So writing about my childhood and writing about my mother's death is what I tend to write about. This was the first time I wrote about my asthma and it was hard to write about it because I don't have a lot of memory. I had to interview my Dad, I had to do some research, and I had to relive the trauma. I just kept working at [the story] and sometimes felt a little sick after writing but I just kept working. I usually write ten drafts before I show it to any one. I showed it to my husband and he reacted positively. I showed it to a class that I was in and to my teacher and they responded positively. I thought maybe I've struck something here. Then the story sat in my computer for a year; it did. And it was after I started taking a class about the book I'm working on that I decided to send it out. Maybe the year allowed it to percolate so it didn't feel as scary. Once it was out there, the feedback was great. People came out of the woodwork. People that knew me as a kid, that knew me when I had a collapsed lung or people who knew me as a kid who didn't know any of this. They were all very moved by the piece. That was very powerful. My mother-in-law said, "It’s like you've come out"...my interior world had been different from my exterior world; people might see me as this successful or...successful is the wrong word but kind of, um...what is the word I'm looking for?

Annie Brewster: Together…

Sarah Baker: Together... you know, with a lovely house and a great husband and wonderful children and all of that; I have a wonderful life but I had this crazy history that people didn't know about so all of a sudden they know this side of me. That has been really powerful.

Annie Brewster: How come people didn't know about that part of you? What kept you from sharing it before this essay?

Sarah Baker: Well, I think that people at the time knew about it because they could see me being sick but then I think I just put everything, all of these pieces of me, on the back burner and I just kept moving forward, trying to almost erase the past. I think that is probably what happened.

Annie Brewster: Do you feel like there was ever any shame in it?

Sarah Baker: That is a really interesting question. I don't know. Maybe it felt like a weakness or something that I had to put aside? I never even brought it up. I didn't even think about my asthma really until I was writing this piece, thirteen years after my asthma went away. It's only now that I'm beginning to think about my relationship to my asthma and why I might not have talked about it for all of those years. I don't know.

Annie Brewster: It's always a really slow process that we don't necessarily know that is going on or sort of coming into a place where you're ready to write about it or integrate it into your life but, can you name sort of what might have changed in you that made you feel like "alright, I'm ready to write about it"? Or was it all unconscious?

Sarah Baker: The Joan Didion piece gave me permission. I thought, "she wrote so powerfully about something that nobody sees"—migraines--and even though I don't have migraines, I don't suffer from them thankfully, the story gave me sympathy for people who do suffer. I know a lot of people who suffer from migraines. The story made me think differently. I felt with my asthma...I feel when I write any of these personal stories...I have to get over a hurdle at the beginning but then I begin to feel, we are all struggling in our own way, whether it's with loss or trauma or illness or whatever it might be so if I can tell a story, maybe a few people out there in the world can say, "Yes, that was me, too." A number of people responded to my story on the Commonhealth blog, on my blog, and NPR ran it on their blog with their own stories of childhood asthma. It just kind of adds to the conversation of life. I used to feel ashamed about writing these pieces. "Who's going to care?" "Why would anyone care about my life"? But I’ve learned that these stories do resonate. I'm drawn to personal stories whether in books, memoirs or articles... I thought, "Why shouldn't I be a part of this dialogue?" I have a kooky story. I think I can tell it with a little bit of humor or something that will make people keep reading. So, I’m just going for it.

Annie Brewster: Do you feel like writing about it has changed your relationship with other people?

Sarah Baker: Absolutely. Even though I’d written it a while ago, when it came out it was very raw for people. One friend, for instance, stopped me on the street. She's a therapist, and she said, "I'm going to think very differently about the kids I treat that have asthma...a lot of it is from the stress of their homes." Because I wrote the story a while ago, by the time it was published, I was closed off to it. But for people who had just read it, it was still very raw. It was hard for me sometimes to know how to respond because the enthusiasm and the kindness and the overwhelming support was so powerful. I didn't always know how to respond. I just tried to be gracious.

Annie Brewster: Did your children know all this about your asthma and your life and the struggles and your mother's death before you wrote this or was it new for them to read it, or did they read it?

Sarah Baker: They haven't read it yet. I'm wondering when to show it to them. They’ve heard bits and pieces of my story but they haven't read any of my writing yet. I was just thinking today about when I would show it to them. I showed it to my nephew, my brother's son, who is a junior in college. He responded so thoughtfully. I think the article helped him understand his father's story, and helped him understand me. I will show it to my kids when I feel they're ready.

Annie Brewster: What do you think it would take for them to be ready?

Sarah Baker: Well I don't want to scare them. I don't know...maybe I am underestimating them. I have a fourteen year old and an eleven year old. Maybe after this interview, I will go home and show it to them and see what happens.

Annie Brewster: That would be interesting. I'm interested in the motherhood piece and I was really moved by your story of your mother's illness and her death and how that affected you. I'm wondering if you can speak to the interplay between that loss and that pain before the loss and your asthma. What was the interaction? Stress you named already but was there more that...it's all so woven together and complex I know, but how do you think those things played off each other?

Sarah Baker: I'm only beginning to learn about that. But I think they absolutely played off each other. In my piece, I quote Senesa who said he’d had a lot of illnesses but asthma was the worst because it was like “rehearsing death.” It’s intense to think about that. I had asthma before she died. She got sick when I was three and I had my first attack when I was eighteen months old so I had already had it. But to have my mother die and then to have this disease that's "rehearsing death" where I couldn't breathe; there has got to be a link there. I don’t understand completely. I am still exploring it.

Annie Brewster: Yes. I was struck by the image of the two of you sort of in parallel, in different hospitals, but across the city from one another, so apart but together in an interesting way.

Sarah Baker: Yes. It must have been impossible for my father who had a full time job in the navy and had to commute between these two hospitals. My mother was at John's Hopkins because they were doing cutting edge research on brain tumors. She actually lived a lot longer than they expected... and then I went to Bethesda Naval Hospital across the state of Maryland. We lived in Virginia. Sometimes my Dad had to drive over 100 miles a day going between the two hospitals. Right before my mother died, my father was in the hospital for an ulcer. That's not surprising. I had been in the hospital for an asthma attack and my mother was actually, she had been at home and was actually put in my hospital, so she could be near everybody. That's when she died. But I never saw her.

Annie Brewster: I'm just sort of talking off the top of my head here but, in hearing you speak and sort of thinking about this image of "rehearsing for death" and her death, do you think in any way that your asthma worked to keep you sort of connected to your mother in a way? Or does that not feel like it fits?

Sarah Baker: I'm learning a lot about that now and I think absolutely. I think when you lose a mother or a parent early in your life and you don't go through the grieving process, I think you become very loyal to the sadness and I think there is a part of you that unconsciously, because you're little and you don't have the words for it, says, "I'm going to stay loyal. I'm never going to be as happy as you were.” And so, yes... I absolutely think that when you lose somebody when you're little, you make these silent pacts with them to stay loyal to the sadness, to stay loyal to what they went through...to keep them on a pedestal and to hold them in this special place in your heart.

Annie Brewster: Do you think sort of unconsciously maybe you would have felt like getting better and not having asthma anymore would be a betrayal of sorts?

Sarah Baker: It’s risky to say any of this because I did have asthma and I wouldn't want to take away from anybody that does have asthma. But, I had a lot of trauma and maybe this was one of my ways of staying loyal to her. I don't know. This is all speculation. It's just curious now as an adult when I don't have asthma and it went away so quickly once I had stability...I'm just now looking at these questions and wondering, what went on really?

Annie Brewster: I think you're right to say that you don't want to take away from anyone who has asthma, and I was wondering that and I was going to ask you, what is your thought on what role two individuals play in creating their own illness and to what degree are we responsible for that? I know that's a big question and it's really complex but...

Sarah Baker: I don't have any authority to answer that question... I can only tell my own story. This is all speculation. My parents were both smokers; it was a time when people smoked. We lived in a house with wall-to-wall carpeting and you know, it could have been that my environment changed, I don't know exactly and I'm reluctant to say that we create our own illnesses. I'm just looking at my own circumstances and wondering. My son has asthma but it's minor and we manage it. He's never been hospitalized. Maybe, my asthma would've been like his. Maybe I would've had it but it would've been milder.

Annie Brewster: I absolutely agree with you, I am very reluctant to say that anyone causes anything but I think it's a complex interplay between genetics, the predisposition that we have and our environment and our stress and our psychosocial circumstances and all of that. So, of course it's impossible to say. And sometimes I think there is just bad luck and that's a factor. Can you say how maybe having lived through both asthma and your mother's death may have changed the way you mother today?

Sarah Baker: Both absolutely inform my parenting They inform everything I do, not consciously maybe; but, I know I have a fear of loss. Also, I had such a crazy childhood that I’ve always wanted to make sure that my children have a happy, joyful, stable childhood. I've made a lot of choices to make sure of that--sometimes even putting motherhood in front of other choices that I might have made.

Annie Brewster: Are there parts of you that you love that you feel came to you because of these difficult experiences in your life? Things that you're proud of; strengths that have come out of that?

Sarah Baker: Well, I do think that I have resilience and grit (two buzzwords these days). I wouldn't wish my childhood on anyone but I did have to learn how to cope and I learned how to be around all sorts of different people and circumstances. They're positives and negatives to that. I think it made me flexible but then it kind of...you reach a point where you become inflexible because you're tired of always trying to accommodate other people. So, there are positives and negatives.

Annie Brewster: I love the image of you're singing and the sort of juxtaposition of the asthma and the singing and the different ways of using your lungs and your breath. I thought that was very beautiful. Can you tell us more about your singing and how that feels to be taking voice lessons?

Sarah Baker: In the beginning it was unbelievable what a bad singer I was. I was inhibited; I couldn't even get the sound out. It took a long time. After four to six months, my teacher realized that I was probably a little tone deaf so then she did some ear training. Slowly, I've gotten more comfortable and I've been able to access the different parts of my breathing and my voice. Recently, she told me I could sing soprano. What a shocker!

Annie Brewster: Do you feel like somehow, I mean I'd be afraid to take voice lessons, it takes a lot of courage. Do you trust yourself more now? Is allowing yourself to sing...does it have anything to do with trust or letting go? Can you speak to that?

Sarah Baker: Absolutely, it has to do with finding your voice literally and feeling that your voice matters in the world and that you're not embarrassed by it. My first year of singing lessons was about quieting my inner critic. The one that says, "No one wants to hear this." Same thing with the writing, you know. My singing teacher was so gentle and kind. She just kept saying, "Don't criticize yourself, and just sing. I want you to sing loudly and I want you to just go for it and don't think about anything other than that." It was through that process, of just going for it and being completely uninhibited, that the sound started to come out.

Annie Brewster: That's amazing. What made you decide to take the voice lessons?

Sarah Baker: There are so many opportunities to sing in the world and I was never singing. I lacked confidence. I wanted to sing at school assemblies, or birthday parties, or wherever, and feel good about it. So, I just went for it.

Annie Brewster: Do you think that writing about all of this and in a public way has changed your relationship with your father? Is his still living?

Sarah Baker: Yes, he is still living

Annie Brewster: And your brother, you said you had a brother. Do you have any other siblings?

Sarah Baker: Yes. I have a brother. I also have a half brother and half sister.

Annie Brewster: So, has writing altered those relationships?

Sarah Baker: Yes. I think for my brother who has his own business and works very hard, I can write these stories and send them to him. He can relive with me some of this trauma that we just had to run as fast as we could away from. My writing has made me closer to him. I’ve given my dad some of my pieces, not all of them. I'm worried that he might feel hurt by them. One piece I gave him, he responded by saying, "Well, I actually didn't think that paragraph was accurate." It’s all perspective. It was accurate for me and so, I'm sensitive about showing things to him because I'm protective of him but, I also...It's through my writing that I've gotten to know my own story. I'm not blaming anybody at all. I'm not trying to judge them. I'm just trying to tell the story. I'm getting more confident with showing him my work and not worrying. I have some essays, though, that nobody has seen except for classmates or very close friends. I worry that people will be offended by them.

Annie Brewster: Tell me about the memoir you're writing.

Sarah Baker: I had written a bunch of essays like the asthma story and realized I had about forty-five pages. In them, I kept telling the story of my mother and her death over and over but in different ways. Then I read the book "Wave" which is a spectacular memoir by Sonali Deraniyagala. She's Sri Lankan. She lost her whole family in the 2004 tsunami. It's an unbelievable book. After I read it (it took me two and a half hours and it was painful to read but it was so powerful), I thought she's done an incredible service for the rest of us. I learned what she went through, and how she came out and I thought, "Maybe I can write a book that is a legacy of loss." The story of a little girl who has lost her mother and her father who, as I say was "out to sea" (because he was out to sea, literally), and who lived with her relatives - how I carried that loss into my adulthood. I want to tell a story of how we carry loss and what happens when it's not tended to properly.

Annie Brewster: So, it's a giving back of sorts.

Sarah Baker: Yes.

Annie Brewster: You articulate - you say reading "Wave"-I want to go out and read it now-it tapped into something in you and it's that giving back piece that I'm interested in. What do you think, I mean it moved you, but what else did it offer you? Can you articulate that?

Sarah Baker: First, it is absolutely beautifully written so it is a great example of writing and structure. But more than that…she lost her parents, her children, and her husband and I just don't know how anybody could ever survive from that. She paints this picture of how Elizabeth Kubler Ross in many ways was wrong. I don't know if wrong is the right word but The Five Stages of Grief, you don't pass through them very easily. They are messy and they are morphing and in this book you see that. The other part of the book that was powerful for me was that she had a real community to support her. She had friends and relatives there to take care of her and it took a long time. It took a long time to even think about her family that she lost. And then, how she very carefully pieced it back together with memory where all of a sudden she could go back to her house in London and all of a sudden she could begin to think about her husband and then she could begin to think about her parents. That’s the way grief works. It doesn't happen all at once; it comes gradually and in an agonizing way. She describes it so beautifully and accurately. I wouldn't say that at the end of the book that she, you know you never recover, but she's living her life and she's written this beautiful book and she's helping people in the world who have experienced loss. It is brave of her to have written the book.

Annie Brewster: Absolutely. I also think it is really helpful to see an example of the truth, which is that it's messy, it's gradual; you don't always know that you're going through the process when you're going through it. It's not clean and I think that is freeing to other people who are in the midst of it.

Sarah Baker: Absolutely, yes. A family rents her parent's house, for example. They move in and she can't stand that they're living there. She goes to their house at night and rings the doorbell and runs away. She torments them. This is a woman who is a professor at Columbia now, I believe. I mean she's incredibly educated and that is where grief took her. It took her to terrible depths. She drank. I mean she had a real drinking problem for a while. She really scraped hell; she scraped the bottom. Maybe it was what you asked earlier about being loyal to death, to the deceased. Maybe she thought, "I'm not going to have a better life than you are. I'm going to live an equally bad life." Maybe she was unconsciously creating a hell for herself to show her loyalty to the people she loved and lost.

Annie Brewster: That's well said. Also, I think it's so helpful to see the movement; that you can hit those depths of horribleness and then move out of it and I think that is always so helpful to see when you're in the midst of something. That you're not going to get stuck there, that you're going to pass through. So, do you feel like "Sassy Pants" is back?

Sarah Baker: "Sassy Pants"... Yes! I feel like Sassy Pants is... It is kind of sassy to publish an article about my asthma I think and send it out to the world. You've got to be a little bit sassy to put yourself out there like that. Maybe you have to be a little sassy to sing, especially when you're going for those high notes. So, yes, I think Sassy Pants is back and she's breathing well.

Annie Brewster: I love thinking about this image, again, the singing, I just think it is such a joyful thing and it is so freeing. I love this image of you swaying with the music, with the sound bursting out and it feels really hopeful. I'm wondering, do you feel like you're at some sort of transition point where you're more free to dream about the future and what it holds and letting yourself deserve these things...does that feel accurate? And if so, what are the things you're dreaming about? What lies ahead for you?

Sarah Baker: I'm getting there for sure and I think I'm dreaming about being able to... I never even thought I'd be able to write; I didn't think I knew how. I learned how to write in my forties. I took a grammar class. I started at the beginning. I had been an editor, I think I have an ear for language. But, I had never written a story before. It must be about my forties--you start to look at your life differently and see what you want to get done. I have just gotten comfortable thinking about myself as a writer and actually believing that my writing resonates and that it is worthwhile to write and publish. So, my dream is to write this book, to be able to work through all of these different chapters of my life that are hard to work through and figure out a way to tell it so that maybe my story can help other families or other children out there who also suffer from a loss, like the one that I did. That's one dream. My other dream is to be able to be present--to be able to feel the goodness that is all around me because I'm absolutely surrounded by goodness but I don't always feel it. So my dream is to really see what that is like—to feel present all of the time. That would be amazing.

Annie Brewster: Awesome. I'm excited to read your memoir. Thank you.

Sarah Baker: Thank you.

Our first Healing Story Session on March 5th, 2014, was a great success. Approximately 30 invited guests gathered to listen to LJ and Marie, two amazing women living with cancer, share their stories. Read more about this Session on WBUR's Commonhealth Blog and on Marie's blog Adventures in Spiritual Living.