By Jennifer Pustz

I have so much to be thankful for. I should NOT feel so horrible.

But, I did feel horrible. Lost. Lonely. Exhausted. Often.

I was a sophomore in college. 18 years old.

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

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

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

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

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

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

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

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

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

But not for long. Depression continued to haunt me as I spent time in and out of therapy, on and off medications, feeling okay and not okay.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The unit is separated from the outside world by two pairs of locked double doors. A blinking green light and a soft beep herald our passage through them into a no-man’s-land where a guard sits, patiently unlocking the doors as we come and go. When I enter the airlock the first morning, hang my coat and stow my backpack, it feels as though I’m in a sci-fi movie, an intergalactic explorer awaiting my first excursion into the uncharted expanses of space. The atmospheres equilibrate and, I will soon learn, norms are stripped away, decompressed. Not sure what to expect, the door chirps open and I step into my month-long rotation on the inpatient psych ward.

Each morning, residents, psychiatrists, nurses, social workers, and I pile into a tiny, windowless room with chairs pushed up against the walls in two rows facing each other. I am the only medical student among them, a wide-eyed interloper squeezing into a center chair. Patients are led in one by one to sit beneath a watercolor painting of goldfish in a pond while we ask them things like, “How is your mood today?” and “Did you need your Zyprexa to sleep last night?” A pleasantly psychotic woman, untroubled by her delusions of being a powerful real estate lawyer – she is homeless but insists that her office has faxed her discharge paperwork – doesn’t seem to notice that I’m there. With fifteen or twenty minutes per patient and our elbows and knees bumping up against each other, these encounters are concentrated in time, in space, in feeling, and they leave me jelly-legged and dazed when I finally stand up hours later. Every minute I’m cycling through the full range of human emotion, from proud to sad to irate to hopeful. I fidget in my chair as tremulous patients beg for benzos. I hold back tears as a suicidal businessman crumples wet tissues in his bandaged hands. Sometimes I just stare at the goldfish and wonder if this is what it’s like to be crazy.

One day a few months prior on a surgery rotation, I stood in the OR at the end of a long case, carefully running a subcuticlar skin closure.

“You’re a natural.” The surgeon, arms crossed, looks over my shoulder. “What specialty do you want to go into?”

“Neurology.” I watched the last stich pull the skin into a taught pink line the patient would remember me by.

“Neurology?” She sounded confused. “But don’t you want to fix people?” Her jaw was tight and face serious.

This was nothing new. From the beginning of medical school we are taught to diagnose and treat. We recite mnemonics for the acute management of myocardial infarctions, and can name first, second, and third line therapies for asthma. We titrate blood pressures to evidence-based levels, and feel weirdly satisfied when our heart failure patients pee after a dose of diuretics.

We are taught to grow from the first year student who can report that something is wrong to the doctor who can do something about it.

On the psych ward, my patients’ foggy insights clouds my own. I find myself in the thick of the confusion with them, trying desperately to “fix,” to “cure,” to achieve some venerated end I had been conditioned to strive for, and driving myself insane with an inexplicable rage when I can’t. A woman with a functional tic can’t accept that her problem is not the result of medical errors and refuses psychiatric intervention. A kind man with bipolar disorder and an addiction who got high and tried to crash his yacht tinkers with his medication doses and stares silently out the window at the sailboats dotting the river below. A deeply depressed attorney can’t allow himself to just feel sad. Seeing them every day is excruciating: each carefully articulated question I ask falls flat, and simple conversations quickly turn into circular back-and-forth’s that devolve to the absurd. Every day I feel like banging my head against the wall, and each night I drag home the weight that others can’t carry.

Shelly* is 30-something, wiry, all clavicle and bony knees– breakable, almost – with thick glasses that magnify her round eyes and give her a permanently forlorn look. She wears Victoria’s Secret sweatpants with a black sweatshirt and Ugg boots, her long brown hair pulled into two braids that fall down her back.

The night before her arrival, she had lined up her anxiety pills, her mutinous artillery of serotonin and GABA, in one last attempt to create order in her chaotic life, before swallowing them one by one. However, her final act of treason was interrupted, and she ended up with us. When we first meet, she is reticent, eyes downcast, giving up only a word or two in barely a whisper. But soon, she opens up.

Two young women in a foreign land, we hit it off: she shows me the drawings she makes in the journal she guards tightly against her chest with crossed arms as she walks around the unit, and talks about seeing her dog when she gets home. She is tougher than her small frame lets on, both physically and mentally. After a week of dutiful CBT practice, she is deemed ready to go conquer her automatic negative thoughts on her own, out in the real world. On the last day of my rotation the two of us sit under the goldfish, talking about going home, about passing through the airlocked doors back to the outside world. Suddenly, her face clouds and she begins to cry for the first time since she’s been here. I hand her tissues.

“What’s wrong?” I break the silence.

“I feel like a failure,” she says through tears. “I’ve worked so hard, what if I’m not actually better? What if I go home and it all starts again?”

I pause.

“Well, at least you’re trying, right? That’s pretty good.” I watch her think about this for a moment, brow furrowed, tiny fists balled in her lap.

“Yeah,” she smiles a little to herself, eyes looking thoughtfully at the floor. “I guess that’s something.”

Back between the doors, I wait for the green light one last time. Four weeks, ten discharged patients, dozens of prescriptions, and countless long silences later, I don’t think I fixed anyone. I sat with them, though, through all the tears and all the tic-ing, and heard what they had to say. Maybe this is how we help: we shelter, we stabilize, we listen, and we together we take steps, however small. We may not always be able to fix. We may not know what happens when our patients leave the quiet of the pond for the rough ocean waves. But we try. Well, I reassure myself, I guess that’s something.

* Name has been changed

Emma Meyers is a third year medical student at Harvard Medical School. She grew up in New Jersey and graduated from Columbia University with a degree in neurobiology. She plans to do a residency in neurology. Outside of medicine, Emma enjoys art, reading fiction, hiking, cycling, and traveling.

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.  

I met Denise last spring, in a 6-week Narrative Medicine course I co-taught for social workers. She stands out in my memory of the group in many ways: her outfits were always exquisitely coordinated; her eyes sparkled and often glistened with tears; she easily offered humor, truth, and consolation. She always made comments that illuminated the texts we read together in ways I had not previously considered. Perhaps most striking of all was how profoundly the workshop seemed to impact Denise: “It was a monumental experience for me, in my life, as a clinician and as a person.”

For 28 years, Denise has been serving victims of trauma in Brooklyn and Queens. Although she considers herself strong emotionally and mentally, she inevitably experiences vicarious trauma through her work. Narrative medicine - a field based in the belief that effective clinicians must know how to receive, interpret, and help craft their clients’ stories - offers her a means to work through some of that trauma: “(It) is a healing measure that I can tap into that will keep me grounded, keep me available, keep me conscious. To never ever find myself in a position of ‘Oh, I’ve heard this, I’ve seen this before…’ No. Each time is my first time with that person. And (narrative practice) helps with that.”

As traditional narrative medicine occurs in a classroom, the course consisted of closely reading and discussing a piece of poetry or prose every week. Then each participant, facilitators included, composed a brief response to a prompt related to the reading, and shared our writing aloud with one another.

Denise has always used writing to sort out her experiences. But the practice of narrative medicine expanded her appreciation for the power of the written word: “Reading someone else’s writing and trying to make sense of it, how I might interpret it, and then using that to be able to reflect and write about a personal experience I’ve had – that blew me away.”

Denise models how clinicians can incorporate narrative practice into both their personal and professional life. She finds it helpful to do on her own during a busy day at work: “Sometimes I’ll have to sit in my office and close my door and start writing a thought that I had about an experience I just had with someone, and it’s safe. It’s in a place where I know I can go back to it. I can ground myself. I can be in a place of objectivity instead of subjectivity.”

Denise also introduces her clients to their own narratives during therapeutic encounters, by asking: “What was the first thing you thought when this happened to you?” She observes how an invitation for them to tell their first-hand experience of the trauma “allows them to push everyone else to the side. Often people don’t think about their first thought, their first emotion. And that gets them to a place where they can write a (first-person) narrative.” 

She guides them to develop their story, through writing or speaking: “Some write a paragraph, some only write three sentences. And those three sentences we can talk about for weeks. Some of them choose not to write at all, but instead to record their own voices. And they save those recordings in their phone, and they (listen to it) every so often.” Some of her younger clients even choose to narrate through rap.

Once they begin writing - songs, lyrics, poems, any genre - Denise sees them “healing and moving forward towards closure. They’re experiencing and developing or recognizing skills they had but suppressed or pushed to the side, because they didn’t consider it important. But it’s that very strength they have in them that draws them to a place of healing.” There is a sense of ownership, mastery, and pride that they gain from becoming authors of their life experiences.

Denise encourages her clients to see themselves as she sees them: individuals who have experienced traumatic events, not victims whose stories can be lumped together in domestic violence tropes. She discourages them from telling their stories as: “I’m a victim of domestic violence and this is what we victims of domestic violence…” Denise instead tries to help each client realize, through crafting a unique story, that “You’re an individual. This is what you went through. How did it affect you: your thoughts, your body, your emotions? I want them to be able to write that out. That narrative is so crucial.”

Denise recognizes, in herself and her clients, the radical changes that narrative practice can cause: “It keeps you from being stuck and unmoveable, to a place where there is mobility, and there are choices. And those choices can be so powerful that it can get people to move from A to B, but in some cases all the way down to Z (where they) find closure.”

Denise vows to carry onward in her clinical practice and personal life using narrative medicine as an unparalleled resource: “This story practice…I don’t think that there’s any medication that people can take that does the particular piece that this work does. On a cognitive level, physical level, emotional level – it’s not anything that can be replicated anywhere else.”

Below is a poem Denise wrote in honor of her clients and their experiences.

Out of the Darkness

Wounded outside in

I felt as though I have sinned

Wounded inside out

Oh how I wanted to shout

But there was no way out

Confused by the tormenting of my mind

It often told me to flee

And escape this life of mine

These intrusive thoughts

Powerful and fierce

Lead me into a world of

Self-affliction and fear

In the shadow and secret nights

You told me I was your Queen

Once you called me wife

Confused by your touch

Why did you love me so much?

Your hands strong and mighty

Forming a fist that would crush my body

So, still I stood, unaware of my own breathe

Somewhere in the corner of my mind

Wondering when will the night terror end

The story is out now and my song is strong

No longer will I hide in the corner of my mind

No longer confused and afraid of the midnight air

It stops here

Listen to my story loud and clear

I am free of the misery and constant fear

No longer vulnerable or invisible I am here

I will sing loud and strong for the courts to hear

What you have done to me over the years

It stops here.

The table has turned now

Hide in the shadow and behold your fate

As you will spend the rest of your years

Fearing those who have heard my song 

More about Denise Briales:

Denise has worked in the field of social work for the past 28 years servicing victims of trauma both from secular and sectarian backgrounds.  She herself has been exposed to many traumatic events that have made powerful imprints in my personal and professional life. Denise has long used journaling as a therapeutic tool. Since being exposed to narrative medicine, when she reads back her written words, she attains centering, grounding, awareness, and healing from the experience of vicarious trauma that affects caregivers in mental health professions. 

More about Annie Robinson:

As a patient, and as a caregiver in the role of a doula supporting women through birth, abortion, and miscarriage, I have experienced the power of stories in healing. I recently graduated from the Narrative Medicine master's program at Columbia University, and will begin at Harvard Divinity School next fall to explore the borderlines between ministry and medicine.

I also curate an oral narrative project called “Inside Stories: Medical Student Experience”, 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. You can listen to their stories on iTunes podcasts or here: http://in-training.org/inside-stories.

Over the coming year, I will be working as an intern for Health Story Collaborative and writing a series of 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.

I want to tell you a story.

It took place during the radiation phase of my breast cancer treatments.

My radiation sessions were scheduled at the same time, every day, for six weeks. Each day I saw the same patients and the same technicians. We were all on a first name basis.  I saw the same hot chocolate-cappuccino-coffee machine, the same cheap plastic bowl of fresh apples, oranges and bananas, the same stack of well-worn out-of-date magazines, the same relatives and friends accompanying their loved ones, and the same zapping of radiation. The one thing that didn’t stay the same was our changing bodies. We were all deteriorating. Not only was my body changing from the radiation but also the deep chemically-induced menopause I was in, was severely affecting my quality of life. If you can imagine how regular menopause affects women who lose their hormones gradually over a period of years, just think how it felt to lose mine in two weeks. I was having extreme hot flashes every ten minutes, twenty-four hours a day, seven days a week, some so harsh they left me faint. Menopause can also create a depressed feeling and I felt that creeping in as well. My doctor told me that losing my hormones so fast due to chemotherapy was doing such a job on my body, it was like driving my car into a brick wall at forty miles an hour. I found his analogy validating because that’s exactly how it felt. Smash! Bang! Boom!

Just to let you know, radiation in itself is actually quite painless. Unfortunately, what happens as time wears on is the skin that’s been radiated gets burned. Sometimes it looks like a fashionable tan, sometimes it looks like a sunburn, and sometimes the skin gets so badly burned, the doctors have no option but to stop the treatments completely. That’s exactly what happened to my friend Lily. Lily and I met in the radiation waiting room while she was being treated for breast cancer. She was of Asian decent, and even though she stumbled with her broken English, and I with my Chinese, we understood each other perfectly. Just like schoolgirls, we saved seats for each other every day. We connected on many levels and as the weeks moved along, we developed a deep love and respect for each other.  One day Lily confided in me that she would no longer be coming for treatment.  She opened up her shirt and I couldn’t believe my eyes. The severity of the burns on her chest was shocking. I didn’t know if Lily’s skin was more sensitive than mine or her level of radiation stronger. What I did know was that Lily’s chest couldn’t tolerate any more and her treatments were stopped permanently. I felt terrible for the hopelessness of her situation and, selfishly, I also felt terrible for myself — I would miss her.  I made several attempts to stay in touch, but sadly Lily and I never saw each other again.

That’s not the story I want to tell you.

Another patient I met while sitting in the waiting room, day after day, was Peter.  He had prostate cancer and we soon became buddies. Peter’s treatments were affecting his hormone levels, similar in ways to mine. He was going through a male menopause of sorts, complete with hot flashes, weight gain, frequent bouts of crying, periods of insomnia, low libido and an overall lack of well-being.  He often shared his emotional and physiological changes with me in great detail because he knew I would understand. Peter and I developed quite a bond, playing pranks on each other regularly. Each afternoon, while waiting for his name to be called, he ate a banana from the fruit bowl.  Peter just loved bananas.   One day, he was late for his treatment and I noticed that there was only one banana left in the bowl.  I didn’t want anyone to grab it, so being the thoughtful prankster that I am, I snatched up that Chiquita and hid it in my pocket.  When Peter finally arrived, he ran over to the fruit bowl but alas — no banana.  His disappointment was palpable.

“What’s wrong Peter?” I asked.  “You look so sad.”

“I wanted a banana but there’s none left,” he answered.

“Awww…that’s too bad.  Well, look down here. Oh my goodness. Is this a banana in my pocket or am I just happy to see ya?”  Quickly I whipped out that banana and Peter’s face lit up. What a sight. To most people, this may have seemed like such a small thing, but those kinds of exchanges amused us to no end and it helped get us through the day.

That’s not the story I want to tell you.

We all had our own routines when it came to our radiation appointments. This was mine: I’d sign in, walk into one of five closet-like changing rooms located within arms reach of the patient’s waiting room, put on one of those terribly revealing hospital gowns and leave my clothes on the hook, praying that no one would steal them.  Of course, I really didn’t have to worry too much about that. Being 5 feet tall, my pants would look like knickers on anyone else. After that, I’d sit in the waiting room, have a cappuccino, chat with a friend, read a gossip magazine to get up-to-date with the really important issues in life, and wait for my name to be called. When I’d hear ‘Marla Lukofsky’ over the speaker, I’d be escorted into a cold room with a large radiation machine and would hoist myself up onto an even colder metal table. Then I’d slide the hospital gown down to my waist, lie there and watch the huge high-tech contraption move across the ceiling until its projected grid pattern aligned itself with the tattoos on my chest. The machine would then zoom in close, and the technician-of-the-day would run out of the room as fast as he or she could, and hide behind a five-inch-thick Plexiglas-sealed container. That got me to thinking, ‘Hey, if it’s that dangerous for them, then what am I still doing in here?’

“Are you ready, Marla?” the voice on the intercom would ask.

“Yes, I am.”

 “Okay, then. You can keep breathing, but DON’T MOVE.”

Talk about a contradiction. Then the radiation machine would let out a disturbing sound that alternated between a high-pitched squealing noise and a machine gun popping. In a minute or two it would be all over, only to be repeated several more times on other areas of my chest. Sounds pretty simple doesn’t it. They’d do their job by zapping me and I’d do mine by lying still and taking in the rays.

Each day was becoming harder than the next. I started to feel like I had nothing important to do.  In order to bring in some money and keep myself somewhat active and stimulated, I got myself a part-time job at the only place that would hire me, Tusquellas’ Fresh Fish Market. Can you imagine feeling nauseous and choosing to work in a FRESH FISH MARKET?  What was I thinking?  Talk about upsetting aromas!!! On the plus side, when I went into a huge hot flash, I’d just leave the customer in the middle of their order and jump into the walk-in freezer at the back to cool off.  Sometimes I’d come out with icicles hanging off my hair. I’m not kidding.

Every day like clockwork, while my spirits were plummeting, I’d leave work and go to my radiation sessions. The technicians would always ask me, “How are ya doing, Marla,” before we’d get started and no matter what I’d answer, they’d never say much back except for the expected platitudes.  I hate platitudes. On a regular basis I would challenge them.  “Don’t be so guarded with me or any of the other patients. We’re not going to hurt you, you know!”  I guess I made an impact because when I received my Certificate of Completion from the Comprehensive Cancer Center, there was a hand-written inscription on it saying, ‘Don’t be so guarded! All the best! Andrew and Judy.’

That’s not the story I want to tell you either.

One day, while sitting on the cold slab in the radiation chamber, Andrew, my technician-du-jour, asked me how I was doing. Maybe he was expecting me to say the usual ‘I’m fine thanks and you?’ but I didn’t — not that day.

“To be quite honest Andrew, I’m awful. I work in a fish market, I smell like Tilapia, and I feel like I don’t have a purpose in my life anymore.” Then I started to cry and cry and kept crying as if I was making up for all the days that I hadn’t let myself cry. Andrew handed me a Kleenex and gently said,

“Marla, I think you do have a purpose. Maybe you just can’t see it right now.”

“What are you talking about Andrew? All I do is come in here every day stinking of fish, get zapped, glow in the dark and go home. Nothing more than that.”

"Well, I’ll tell you what I see, Marla. The other day we had a new patient. Remember? She came in with her husband, the one with the blue scarf on her head.  Well, as you know, we have to take a Polaroid picture of each new patient for our records, so that we can make sure we’re giving the right radiation to the right person.  Anyway, you and Peter were sitting together, chatting away as per usual.  Then we came into the waiting room to take that woman’s picture, but she refused to let us and started to cry.

‘No, you can’t take my picture. I’m ugly. I look terrible and I feel terrible, and I don’t want anyone to see me like this. No! You can’t take my picture.’

We explained to her that we couldn’t start her treatments until we had the Polaroid, regulations, you know.  Her husband tried to change her mind and another technician tried too, but she wouldn’t budge.  So, we left the room to re-think our strategy while she sat there still crying.  Then I saw you, Marla. You walked over to her, knelt down right in front of her, put your hands on her knees and said, ‘Hi, my name’s Marla. I couldn’t help but hear what you said about the picture, and the way you look.  I really understand some of what you feel — not all of it, because I’m not you, but I have to tell you something. Underneath my scarf, I look just like you.’

And Marla, you took off your red bandana and exposed your bald head to that woman, a total stranger.  Then you said, ‘You see?  I look just like you. And you know what else? I think you’re beautiful, and trust me, I know a beautiful woman when I see one and you…are beautiful.  I wish I had your looks. I let them take my picture and I’m nowhere near as beautiful as you. Now, if you don’t let them take your picture, then you won’t be able to start your radiation and the sooner you start it, the sooner it’ll be all over and you’ll start feeling better again.’ Well, Marla, the woman sat there for a minute, thought about what you said and blurted out, ‘OK… I’ll let you take my picture.’  As soon as she said that, we scrambled back in, snapped the shot, and got her into the radiation room.  Her husband was grateful and so were we. And now you come in here and tell me that you don’t have a purpose?  Well, all I can say is that what you did for that woman was a wonderful thing. You helped her get through a difficult time. What’s more important than that? I saw you take that banana for Peter and make him laugh. I saw you get that hot chocolate for Cheryl and get her to open up to you. Even though you feel terrible right now, you have to remind yourself that you help people…in more ways than you realize and, in my books, that’s having a purpose — a very important purpose.”

I was shocked by what Andrew had told me. I was more shocked by his total recall.

“How the hell did you know about that Andrew?” I asked. “Do you have hidden cameras everywhere?”

“Actually, yes, we do, in every room, with intercom systems. We watch and listen to everything that goes on around here.”

“Geez…if I knew that, I would’ve put on some lipstick.”

After Andrew left the room, I sat there absorbing all that he had said. He made me feel better.  He gave me a new perspective on things. You see…he took the time for me, to point out that I took the time for someone else.  It was only one moment out of our lives, one moment in time, but it gave so much and sometimes that’s all it takes to help each other get through to the next day and the day after that. Sometimes, it’s just that simple.

That’s the story I want to tell you.

Previously published in the International Journal of User-Driven Healthcare and Cell2Soul.

Marla Lukofsky is a Canadian/American veteran stand-up comedian, writer, breast cancer survivor and keynote speaker. Her voice can be heard as Good Luck Bear on The Carebear Cartoon TV series. Her writings have been published in various medical journals in North America including Cell2Soul: The Journal of Humane Medicine and the Medical Humanities, The International Journal of User-Driven Healthcare (IJUDH) as well as The Online Journal of Community and Person-Centered Dermatology (OJCPCD). Ms. Lukofsky shares her unique journey with cancer and life in the highly acclaimed show ‘I’m Still Here…and so is my Hair!’ to audiences across the Globe. She has also written her memoir by the same title.  Marla’s belief is that if she can touch even one person and have them feel they are not alone, then she has succeeded.

www.marlalukofsky.com

mmlukofsky7@aol.com

http://en.wikipedia.org/wiki/Marla_Lukofsky

I have taken approximately 2,604 birth control pills in my life. Every night for almost seven years, the incessant alarm on my phone sounds at 10pm reminding me to grab my water bottle and swallow my pill. They are a consistent aspect of my life, which being on a first-name-basis friendship with the pharmacist at my local Walgreens epitomizes. They feel like a core part of me, determining when, where, and how I start to bleed.

I began taking them in the seventh grade to regulate my hormones in order to control acne. Contrary to popular belief, I am not alone in this, as many women use birth control to regulate their periods, lessen their cramps, and curtail the debilitating symptoms of PMS.

My experience with these pills has been tumultuous, to say the least. At first, I could not say enough about their strength and success. My skin was clear, I knew exactly when my periods were starting, and I felt so grown-up taking a pill from an aluminum case every day. But that honeymoon period (pun intended) did not last long. About six months after taking my first pill, I returned to the doctor that had initially prescribed them. The pills were changing who I was as a person. My entire family had noticed that the week before my period, I became withdrawn and extremely moody, crying multiple times a day. At first, this was attributed to a combination of cliché teenage mood swings and PMS. However, it wasn’t long until the characteristics that had defined my personality– a quick sense of humor, a happy-go-lucky attitude, and a passion for pulling pranks– had all but disappeared. To my shock, my doctor explained that this was not unusual or uncommon for women taking oral contraceptives. She told me we could experiment with different formulas of pills, but some bodies simply could not handle the pills. I was devastated.

I have tried eight different kinds of birth control pills with varying levels of success. Although an inconvenience in my life, I came to terms over the years with the pill being a core aspect of my womanhood. But after spending a semester enrolled in Women, Gender and Sexuality Studies exploring why women deserve more than what society often expects them to accept, I have come to believe that we deserve more from our birth control products.

 My experience is not unique. Women have learned to expect serious side-effects with any form of birth control. These side-effects include, but are not limited to: nausea, weight fluctuations, headaches, anxiety, depression, and suicidal thoughts.

Strangely, there is no outrage about this extreme failure in medication efficacy. In the US, 62% of women are currently on some form of birth control, yet any action being taken to improve it is underfunded and under-appreciated. Women accept less effective medications with more side effects because we, as a society, have learned to be comfortable with a lower standard of care for women.

Widespread apathy towards women’s health is extremely evident when one looks at a recent study experimenting with men’s birth control. In this study, 320 men were given birth control shots every night for eight weeks, in an effort to share out the responsibility of avoiding unwanted pregnancies. The sample considered men of varying backgrounds and levels of sexual activity. Despite potentially optimistic results, we will never see this study brought to fruition. It was halted due to the men experiencing “severe” side effects, such as mood swings and acne. Prior to the termination of the study, many women were hopeful that men’s birth control was finally a solution to their own undesirable experiences. However, the scientists would not allow men to endure these negative side effects for even eight weeks, when millions of women experience them for the entirety of their reproductive years.

This begs the question of why society is untroubled by the less than ideal standard of care given to women yet does not believe it is acceptable for men to tolerate comparable experiences. The lack of women in STEM careers, a reluctance to believe women’s symptom descriptions, and a greed-driven pharmaceutical industry are all connected to this double standard. The compounding of these three elements creates structural inequalities in healthcare that put women in physical danger and must be addressed sooner rather than later.

Women are underrepresented and undervalued in STEM careers. I am a two-year member of WashU’s Women in STEM Club, which aims to increase support and mentoring for women in STEM fields so that they can be better prepared to endure the journey ahead of them. As a college student aspiring to have a future career in the field of medicine, this cause directly affects the trajectory of my life. A 2013 study called “What's So Special about STEM? A Comparison of Women's Retention in STEM and Professional Occupations” explored the environment faced by women in different careers. The results found that women in STEM have a statistically significant increased tendency to remove themselves from their fields. Due to careful consideration of any confounding variables, the study uncovered that the main cause for the mass exodus from upper STEM fields by women is not due to children, as many people tend to believe, but rather because of a “hostile work environment.”

This unsustainable work environment is evident at a well-known and iconic leader in the technology field, Google headquarters. In August of 2017, an executive engineer penned an internal memo to the entirety of Google named, “Google’s Ideological Echo Chamber.” In this memo, the employee explains that women are biologically more predisposed to neuroticism, have less drive for higher status, and are more agreeable than assertive. He claims, “This may contribute to the higher levels of anxiety women report on Googlegeist and to the lower number of women in high stress jobs.” He later explains that accommodations should never be made for any employees on the basis of gender or race, as the only reason women and minority groups are underrepresented in tech is because of “biological disadvantages.” This memo went unaddressed by Google leadership for many days. Eventually, an apologetic email that contained plans for improvement was sent out to the company staff, but the damage was already done.

Women’s perspectives are integral to the creation of a successful product for women, yet the vast majority of scientists creating, testing, and marketing birth control products are men. I believe men cannot possibly comprehend the debilitating side effects of birth control pills, and therefore will not fight as hard as women would to find a solution. Because of this, it is essential that we encourage and support young women considering careers in science–which must occur early in a girl’s life. A 2004 research study done by Patricia VanLeuvan uncovered that there is a massive dip in interest in science careers of young girls between the seventh grade and the first year of high school. Careers that have better representation of women, such as medicine and biological sciences, experienced a lesser decrease in interest than less represented fields, such as engineering. This research shows that when one generation of women are inspired to pursue fields in STEM, a domino effect will result in the coming generations.

A recent episode of Grey’s Anatomy, one of my personal favorite shows, explored society’s shortcomings at recognizing and treating women’s self-reported symptoms . Dr. Miranda Bailey, a world-renowned and extremely respected Chief of Surgery, goes to a rival hospital’s ER and calmly explains that she believes she is having a heart attack. The ER doctors and cardiologists, all her friends and all white males, immediately begin questioning her history of OCD and anxiety, blaming these disorders as the reason for her symptoms. Chief Bailey responds with authority and confidence, relaying that heart attacks often manifest themselves differently in women, with symptoms such as shortness of breath without pain, anxiety attacks, and jaw and neck pain. Even with her expertise and obvious medical savviness, the other doctors refuse to believe her until her heart literally stops beating for two minutes. It is no wonder that doctors regularly disregard women’s self-reported symptoms, when Dr. Miranda Bailey, one of the most beloved doctors in the TV world, was not believed when she described her condition.

A study aptly named, “The Girl Who Cried Pain,” exposed the unfortunate truth that female patients are “more likely to be treated less aggressively in their initial encounters with the health-care system until they ‘prove that they are as sick as male patients.” This statement translates more tangibly to a nationwide average 49-minute wait time for men compared to a 65-minute wait time for women after reporting the same acute abdominal pain in an ER.

The lower standard of care given to women who choose to take birth control is ignored by those who have the power to improve it, specifically a greed-driven pharmaceutical industry. “Big pharma” makes billions of dollars every year off of birth control products, including pills, IUDs, vaginal rings, patches, and shots. These profit margins are only increased by women trying multiple versions of each product, as they are forced to do when side effects are too debilitating for them to function. These profits serve as positive reinforcement for big pharma to continue making imperfect products.

For many years, big pharma companies have gotten away with imperfect pills, knowing that they are the preferred choice of birth control for sexually active women. A recent study in the UK shows that these tides are turning. Bayer Healthcare, a leader in the market of contraception products, conducted a research study investigating women’s attitude towards varying forms of birth control. This research was confirmed by the Office of National Statistics, and found that 31% of women chose, at some point in their lives, to switch from the pill to Long Acting Reversible Contraception, or LARC’s. These women were totally unsatisfied with the side effects and overall effectiveness of the pill and decided that their bodies and minds deserved better.

Society has taught women to expect a lower standard of care from all healthcare providers, ranging from doctors to CEO’s of pharmaceutical companies. This custom is dangerous for the physical and mental well-being of women, which further effects all aspects of society. Therefore, it is time that we, as women, demand more for ourselves. We deserve birth control that does its job with no side effects. We deserve to be heard when we go to the Emergency Room asking for help. We deserve to be represented in fields that make decisions about our health. We deserve (birth) control.

Works Cited:

“(Don’t Fear) The Reaper.” Grey’s Anatomy, season 14, episode 11, ABC, 1 Feb. 2018. https://www.hulu.com/watch/1215330.

Fassler, Joe. “How Doctors Take Women's Pain Less Seriously.” The Atlantic, Atlantic Media Company, 15 Oct. 2015, www.theatlantic.com/health/archive/2015/10/emergency-room-wait-times-sexism/410515/.

Glass, Jennifer L., et al. “What's So Special about STEM? A Comparison of Women's  Retention in STEM and Professional Occupations.” Social Forces, vol. 92, no. 2,  2013,  pp. 723–756. JSTOR, JSTOR, www.jstor.org/stable/43287810.

Haelle, Tara. “Does Some Birth Control Raise Depression Risk? That's Complicated.” NPR, NPR, 9 Oct. 2016, www.npr.org/sections/health-shots/2016/10/09/497087838/does-some-birth-control-raise-depression-risk-thats-complicated.

JV. “Side Effects Are OK for Women's Birth Control - but Not for Men's?” USA Today, Gannett Satellite Information Network, 1 Nov. 2016, college.usatoday.com/2016/11/01/male-birth-control-side-effects-come-on/.

Planned Parenthood. “Birth Control Methods & Options | Types of Birth Control.” Planned Parenthood, National - PPFA, www.plannedparenthood.org/learn/birth-control.

VanLeuvan, Patricia. “Young Women's Science/Mathematics Career Goals from Seventh Grade  to High School Graduation.” The Journal of Educational Research, vol. 97, no. 5, 2004,  pp. 248–267. JSTOR, JSTOR, www.jstor.org/stable/27548037.

Sarah is currently a junior at Washington University in St. Louis, studying Psychological and Brain Sciences. She strives to one day incorporate her passion for women's health into a career in the medical field.

I am an artist based in the San Francisco Bay Area who specializes in the intersection of art and science. I focus on brain scans, particularly MRIs, because I consider them one of the primary symbols of Multiple Sclerosis. Since my diagnosis of MS, I have continually undergone brain scans to track the progression of my disease. Initially the sterile black and white images of the MRIs of my brain were terrifying, and I refused to look at them. I began using my art practice to reinterpret these frightening yet mesmerizing images. I seek to disrupt the unsightliness of these digital images, inviting the viewers to stare directly at the beauty and complexity of the imperfect brain.

My diagnosis has allowed me to integrate neurotechnology into my artwork. Through printmaking, mixed media, and textiles I transform my scan into vibrant landscapes in hopes of challenging how society views illness. I create with the intent of transforming how people view the imperfect body, allowing room for celebration, curiosity, and fascination.

My artwork has been displayed in permanent collection at various institutions, universities, and hospitals throughout the country. My heart remains rooted in the narrative of illness. I am now trying my hand at art and design in the clinical setting.

I have been inspired by the power artwork can have to broaden and deepen the narrative around chronic illness. This is the core of my mission, to create artwork that encourages social engagement and spurs conversations. My vision for several upcoming projects combines patient—centered design strategies, evocative artwork, and powerful narratives. I am currently exploring how art, storytelling and technology can be used to revolutionize the untapped potential of time spent in waiting rooms of clinics.

At some point in our lives, we all become patients and are challenged with accepting illness as a part of being human. Chronic disease is an ongoing natural disaster of the body, where the tsunami is a never-ending undulation of change. This disaster leaves in its wake a real sense of fear, isolation and heightened awareness of the fragility of one's body. Many illnesses that are depicted in the media have a narrative that has a beginning, middle and end—a flowing arc to the story. But most illnesses, especially those that are chronic, lack an arc or even a narrative that makes sense to the outsider. Sometimes it can feel overwhelming, lonely, or diminishing. I create with the intent to transform this experience and use a medium that fosters connections and conversation. In doing so I aim to open up people’s eyes to see the unique perspectives gained through living with disease.

Elizabeth Jameson is an artist and writer who explores what it means to live in an imperfect body as part of the universal human experience.  Before her diagnosis of multiple sclerosis, she served as a public interest lawyer representing incarcerated children; she later represented children living with chronic illnesses and disabilities in their attempts to receive medically necessary care.

As her disease progressed, she began using her MRI’s to create art as a way of reclaiming agency of her own medical data. She transformed the unsettling, clinical images into work that invites people to open up conversations about what it means to have an illness or disability. She now writes personal essays and speaks across the country sharing her experiences living with illness and disability. Her essays have been published by The New York Times, British Medical Journal, WIRED magazine, and MIT’s Leonardo Journal. Her essay, “Losing Touch, Finding Intimacy,” was included in the New York Times book, About Us, released in September 2019 by Norton Publishing.

You can learn more about Elizabeth by visiting her website.

When people look at my poster, their most frequent response is, “Wow! How can I get my own records? I have always wanted to have mine!” I tell them, “Just do it! And be persistent. Even if the contents turn out to be upsetting, I doubt you will ever be sorry.”

This is the story behind how I finally received mine and what I did with them.

I had been wishing to get my hospital records for a very long time. I felt deeply that they belonged to me as they were words written about me during a hellish three-year period in my adolescence. I was certain that they would be filled with outrageous statements, and I desperately wanted to read and respond to them someday.

I was finally released from the last hospital in 1963, and it wasn't until 1978 that I began my search in earnest. During the intervening years, I had been finishing college, marrying, and raising four young children. Although I managed to keep all of those hospital experiences safely compartmentalized away so I could raise my children with warmth and kindness, believe me, the retrieval of my records was never far from the surface.

In early 1978, shortly after meeting my fantastic fellow comrades (Judi Chamberlin, Dan Fisher and David Oaks), I was inspired to start by politely writing to the directors of each of the four different hospitals where I had been locked up: Baldpate Hospital in MA, The Menninger Clinic in KS, Massachusetts Mental Health Center in MA, and Westborough State Hospital in MA. Weeks went by, and I heard nothing. I wrote again. I waited. Again, I got no response. I even considered flying to Topeka, Kansas, to storm that psychiatric barricade and demand my records in person.

Since I was then a single parent with four young children and dwindling finances, I calmed myself and talked it all over with my trusted and dear therapist, Lee. He had saved my life back in 1963 when, by chance, I first met him the night before I was sent to Westborough. He was a young resident and the only person during those three years who had looked me in the eye and smiled and was genuinely kind. He gave me hope. He told me there was nothing the matter with me that had not been caused by the abuses in the hospitals: combined insulin/ECT without anesthesia, seclusion, restraints, molestation, masses of Thorazine, etc.

After meeting with Lee from time to time over the years, in 1978, after my failed letter-writing campaign, we planned a new record-seeking strategy. He wrote to all four hospital directors. It was difficult for me to give the power over to him, but he seemed to be my last, best hope. In 1975, he had become the Commissioner of Mental Health in MA so he clearly had the power, which I was sadly lacking, and he generously used it to help me. Because of his status and powerful stationery, he heard back from everyone except Baldpate. Some of them were only a few pages of summaries, which was annoying, but when he received them he gave them to me.

Finally, during the spring of 1978, since Baldpate had ignored him, Lee made an appointment for us to drive out there.  He told them he wanted us to read the records together, and, since he had been the commissioner, I am sure they felt forced to let us come. I had been talking for months about wanting to steal my records so, on the drive out, I showed Lee that I had brought a briefcase and explained that I had every intention of stealing the pages. I wasn't sure how I would manage it, but I knew I could figure it out once there.

I still remember the day as if it were yesterday. It was a bright blue, sunny day, the trees and flowers were in full bloom, and I was feeling full of hope and confidence. When we arrived at this desolate location in the country an hour outside of Boston, it was a time-travel experience for me. I had not been there since 1961, and the big red "farmhouse" still remained, looming over the grounds. We were ushered into a small office, far from the desolate cinder-block unit where I had been subjected to the combined insulin/ECT. There were two chairs and a little table between us where the thick folder with my records sat—my huge and seemingly glowing hidden treasure! We were at first left alone together to read them, and we decided that I should start reading and then pass each page to Lee. Soon, however, every few minutes an official would nervously interrupt us by opening the door and asking if we wanted more coffee. The records were filled with atrocious, labeling and demeaning words about me, even more disgusting than I had ever anticipated. And, with growing intensity, I wanted to steal every single page from that house of horrors and report the atrocities all over the world.

Finally, after more than two hours of reading, Lee and I had a conversation about how hard they were making it for me to actually commit my theft. He said he wanted to go to the bathroom and told me to feel completely free to do whatever I wished with the papers while he was out of the room. What an advocate he was! But, at that moment I was overcome by his genuine generosity and kindness and fully aware that he might get into serious trouble if I were to steal the entire record. I simply didn't feel I could put him at risk, so when he returned from the bathroom I explained that I had slipped every other page into my briefcase. I paid special attention to picking the most egregious ones, making sure to leave enough bulk so they would not notice, and they didn’t.  We drove back to Boston. I was elated, and Lee was the good sport and true advocate that he had been for so long.

I spent many hours and weeks and months reading the pages over and over, trying to make sense of every notation, every diagnosis. Finally, I bought a box, decorated it with flowered paper, arranged the pages neatly inside, and tied it up with a pale blue satin ribbon.  I kept it on the top shelf of my bedroom closet, where it stayed for years—until October 11, 1991!

That was the date that Anita Hill was called to testify before the Senate Judiciary Committee in reference to the appointment of Clarence Thomas to the Supreme Court. She claimed he had made unwelcome sexually provocative comments to her when they worked together at the Department of Education and the EEOC.  I believed her! Anita was treated dismissively and poorly by the senators, and her treatment put me into high action. I went to my closet, took down my hospital records and proceeded to go through every single page with a fine-tooth comb. The next day, I took the pages and copied them all several times. I then cut out the pertinent, disgusting and demeaning comments and assembled them all on a huge poster board, which I had laid out on my bed.  I designed it using the typed comments, photos from my childhood, and several small sections from op-ed stories I had written which had been published in newspapers.  It took several days of moving the pieces around until I felt completely satisfied. I then shopped around and found a great radical union press, which was willing to print 1,000 copies, way back before digital. The folks at Red Sun Press in Jamaica Plain, MA, were wonderful! I felt respected, they took my poster seriously, and I was thrilled!

I then began showing, selling and giving it away at conferences.  A dear and close fellow comrade bought the first twenty copies in a true gesture of solidarity and generosity.  It was finally registered with the U.S. Copyright Office on April 25, 2007.  I mailed one to The Museum of Modern Art in New York City as someone had once told me that they keep all art which is given to them. I sent a letter of explanation, asking them to consider having a show of art by people who had been locked up in mental institutions, and they acknowledged receiving it.  A framed copy hangs in the history exhibit at SAMHSA.  I gave one to my internal medicine doctor who just recently told me that it hangs on the back of her office door. She is now a dean at Harvard Medical School so perhaps it is having a positive influence on future doctors there. Two years ago, I had three large fabric, plastic-laminated copies made for using at marches and demonstrations. One of them now hangs in the office of Digital Eyes Film.

In the end, this poster has given me a great deal of satisfaction. I feel it is my personal megaphone from the top of the Empire State Building, shouting out to the world: THIS IS WHAT HAPPENED TO ME and THIS MUST STOP!!!

Dorothy Dundas was institutionalized for three years as an adolescent in the 1960s and was labeled a “schizophrenic” and forced to undergo 40 combined insulin coma/electroshock “treatments.” She experienced and witnessed many atrocities. She believes that luck, determination, her own anger and one compassionate advocate were her best friends on the road to her ultimate survival and freedom. Through a number of op-ed pieces in The Boston Globe, Miami Herald and Detroit Free Press, she has voiced her opposition to abusive psychiatric practices. This poster, Behind Locked Doors, which she created from her hospital records, has been  used in training programs. Dorothy lives in the Boston area where she has raised four wonderful children. She has recently retired from The Crystal Lake Express - her own safe, friendly and reliable car service in which she was the sole driver for 30 years. Dorothy is also a blogger on Mad in America: Finding Resilience and Hope in the Face of Despair.

Sick, not silent: A conversation about cancer through art

Sculptor

Dennis@DennisSvoronos.com

DennisSvoronos.com

In September of 2009—at 26 years of age—I was diagnosed with cancer, after experiencing the first of many seizures to come. Of all the trials I could imagine that lay ahead, I never thought most of them would be exercises in recollection.

Patient name? Dennis Svoronos (thankfully I can always get this one)

Date of birth? 3/8/83 (a palindrome, helps to keep it easy)

Occupation? Artist (maybe not my parents first choice)

Approximate date of last surgery? 11/09 (Who forgets their first brain surgery)

Existing medical conditions? Anaplastic Astrocytoma (a cancerous brain tumor)

Repeat daily, for years.

As time progressed; I remember those waiting rooms, questions and ID tags much more than the operating theatre and injections; trauma is kind like that.

However, they made me feel intrinsically linked to my disease. What was I, without these suffixes of sickness to identify with? Somehow, all my other unique and admirable qualities were set-aside for the identifier of ‘cancer patient’. It’s easy to resign to the belief that those forms and wristbands define your life, mere statistics, data—you and your cancer. Just as painless, is to ignore the process completely, pretending your exams and operations are the bad dreams of another person, your ‘real life’ goes on unaffected.

Either way, it seems you’re not to talk openly about cancer, and it is difficult for most; patients, family and doctors alike. My initial sense was, it would be easier for me—and more comfortable for others—to keep off the topic. Sickness is a surprisingly taboo subject in a very liberal culture.

The artist in me, however, couldn’t stop questioning why we hide from the discussion. Over the course of my treatment and the years to follow, the entirety of my work became a continuous, very uncomfortable, conversation about my disease with anyone that would listen.

In doing so, I freed myself from the fear and shame that I felt initially upon my diagnosis. It allowed me to speak honestly to an audience on an issue I was passionate about, to relate to others on a level beyond the initial stigma of sickness. I became a proud patient. My work wasn’t about the ‘battle’, ‘fight’ or being a ‘survivor’; the words of conflict I was trying to avoid. The art became focused on the subtle, sincere and even sarcastic aspects of the life-changing experience I was going through. I wasn’t interested in discussing my struggle with cancer; I wanted to embrace the insight it gave me.

In January of 2014, I exhibited a solo show of this work at the Boston Sculptors Gallery (486 Harrison Ave. Boston). In the month that followed, I was able to engage with patients and the public in ways I was never able to before. My show became a safe space for anyone to talk about this difficult subject. In doing so, stories were shared, wisdom was gained and many tears—of joy and woe—were shed. To all who came, I sought to impart a sense of community and empathy they didn’t enter with. I learned, as a patient I need to speak about my experience with the ‘healthy’ world, regardless of stigma or discrimination. My ultimate healing came through delightful conversations about a horrible problem.

Dennis Svoronos: Biography

Dennis Svoronos’ work exists between art and engineering; it is inspired by the modern world in motion. He uses his sculpture to reflect this environment charged with electricity, spectacle and information. He uses our common language of the 21st century: electronics, robotics and interactive kinetics, to build connections between the viewers and the work. In a society fractured by technology, Dennis Svoronos uses it to bring us together. At current, he is making work in response to his recent diagnosis of brain cancer, seeking to use his art as a platform to question sickness, wellness and recovery.

Dennis Svoronos is a Boston-based sculptor whose work has been shown nationally and internationally. He holds a diploma from the School of the Museum of Fine Arts, Boston, and a Bachelors of Fine Arts from Tufts University. His work has been exhibited at numerous institutions and galleries such as the MFA, Boston; the Norton Museum of Art, Palm Beach, FL; G.A.S.P Brookline, MA; and the Institute of Contemporary Art, Lake Worth, FL. Svoronos has also been the recipient of numerous awards and public work commissions. Currently, he is living and working in South Boston.

Dear Andy,

Wow, it’s been a while since we last spoke. I’m about to start my junior year—can you believe that? It still seems like yesterday that you and I met through South Boston Afterschool. On the T-ride to South Boston, we talked in Chinese (I had just started; you helped me with my tones). We talked about girls (we talked a lot about girls). And sometimes we talked about more serious things. About how we were so afraid to fail, about how we constantly felt pulled in all directions. About how hopeless we felt.

When you quit South Boston Afterschool, I just figured it was a sophomore slump. Maybe your economics tutorial was taking up too much of your time, or maybe you were working on a new start-up, trying to be the next Mark Zuckerberg. You were stressed out the last time I saw you. I wasn’t too worried, though. I thought what everyone else here thinks: Junior year will be better than sophomore year. Senior year might be a bit tougher because of job searching, but you’ll be set after that. You’ll be a Harvard grad the rest of your life.

But then you jumped off a tower in downtown Boston. I thought wrong.

Andy, I spent a long time trying to figure out how to write this letter. It’s been on my mind every single day now for months. I almost gave up, because the words just wouldn’t come to me. It was too painful to express.

Then, in May, my best friend since we were babies ended his own life. He had just gotten into Georgia Tech. He had so much talent. He had such an incredible life ahead of him. His mom found his body. They couldn’t show it at the service.

His death inspired me to write this to you. Because it’s not just him, and it’s not just you. Writing this next part terrifies me, Andy. I’m scared because we live in a world where I can’t even write this letter without knowing in my heart that no matter what people will say, they will look at me differently. I want to make a big impact after I graduate, but I know that publicly discussing my complicated history with mental health—a conversation that should not be any more damning than talking about asthma or a heart condition—might prevent me from doing this. But that is exactly why I have to write this letter. It is time for us to reconcile with the reality of the world that we live in. It is time for me to say now what I should have told you before: You are not alone.

I should have told you about fifth grade, when I would stay up every single night thinking terrible thoughts. I had to make sure once, twice, three, four, five times that our doors and windows were locked, because I had to be sure. I had to know that no one would come in and slit my parents’ throats, and then beat my head in with a baseball bat.

I should have told you about sixth grade, when I touched flowers, and leaves, and people’s hair. My classmates did not understand, so they signed a petition asking me to stop. They gave it to the teacher, who presented it to me. Even today I remember the hurt and shame I felt when I saw the names of so many friends written on that piece of paper. They didn’t know that I could not help it; they did not know that it was outside of my control.

I should have told you about seventh grade, when germs consumed me. Bacteria crawled all over my body and inside my mouth. I would go to the bathroom repeatedly in the middle of class to frantically rinse my mouth and scrub my hands. When my best friend sneezed on me to see my reaction, and another spat in my juice and forced me to drink it, and another threw meat at me because she knew I was a vegetarian. I wondered if I had any friends at all. Maybe they were just pretending to like me because I was so funny to watch. I felt worthless; I felt hopeless; I felt powerless. I felt like I didn’t deserve to live.

But more important than any of that, Andy, I should have told you about how finally enough was enough. My mom got me help. She got me help, even when my teacher asked, “Why does he need therapy? He makes all A’s—he’ll be fine.” My mom replied, “I will be sure to write on his tombstone that he had all A’s after he kills himself because he hates his brain.” She knew what too few understand, that objective achievement means very little when life is nothing but shame and darkness.

Because of her intervention, I acquired tools to deal with my compulsions, to say “It Don’t Matter” until it really did not matter. Overcoming my compulsions was the hardest thing I’ve ever done, but it was worth it. I’m here today Andy, writing this letter to you, because my mom got me help.

Andy, I am sorry that I never told you about my middle school self. And I am sorry that I never told you how therapy empowered me to reclaim the beauty in life.

But I hope this letter to you will help change things for others. I hope it will convince someone who is like me all those years ago to find the support that they need. I hope it will encourage someone like me now—too busy with their midterms, their finals, and their papers—to check in on a friend. I hope it will encourage us as a community to fight against the stigma surrounding mental health issues both in our college and in our nation. And most of all, I am sorry that we live in a society where we could not talk openly to each other.

I miss you more than you can know, Andy. By relating this story—of what I did wrong with you, and what my mom did right with me—I want us to make a difference in the world. Then I will know that I am doing your memory proud.

Will

Originally published in the Harvard Crimson, September 2, 2015

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

In Reflection: Will’s thoughts on the process of writing and publishing this letter

At first, writing Dear Andy was pure catharsis. It was also extremely difficult. For years I had not been able to even talk about my history with mental health and the tragedies of my friends' suicides. To put my feelings into words for thousands of people to see would have been unthinkable to me. But after receiving support from my friends and my fraternity brothers, I found the voice to write my article. As a result of the attention that my article received, I am now working with a number of organizations on and off campus as well as Harvard administrators to improve mental health services. The feedback I have received since writing Dear Andy has inspired me to fight for mental health reform, both on campus and beyond. This has become my passion, and I am not going to give up until I have done everything in my power to change things.

William F. Morris IV is a member of the Harvard College Class of 2017 and is a joint concentrator in history and East Asian Studies.

An Interview with Dr. Anne Hallward

By Val Walker

ABOUT DR. ANNE HALLWARD

Dr. Anne Hallward is the host and founder of Safe Space Radio and a board-certified psychiatrist in Portland, Maine. Anne’s interest in difficult subjects began in her teens, when she noticed how few adults around her seemed to be talking about intimate or difficult subjects. Formerly on the faculty at Harvard Medical School and Cambridge Hospital, she designed and taught courses on death and dying, cultural competence, sexuality, and psychiatric interviewing, and has published on death and dying, cultural bias in medicine, sexuality, and hunger in the Philippines and Bangladesh. Anne is the recipient of the Ulrich B. Jacobsohn Lifetime Achievement Award from the Maine Association of Psychiatric Physicians, the Jeanne Spurlock Social Justice Award from the Association of Women Psychiatrists, and the Exemplary Psychiatrist Award from the National Alliance on Mental Illness (NAMI). She has also been recognized for her work in radio with a Gracie Award for Best Host of a Local Radio Show. Anne speaks internationally on stigma and shame, traumatic silence, and voluntary vulnerability as a form of leadership.

INTRODUCTION: WHY I WANTED TO TALK WITH ANNE

Could there be anything lonelier than not being able to talk about something terribly difficult—something that no one feels safe talking about? One of the greatest causes of social isolation is carrying the burden of stigma, shame or silence. We need safe spaces, or safe people, for sharing what is keeping us isolated and ashamed. Safe spaces are essential to breaking through the walls of isolation. I’d heard of Safe Space Radio in the years I’d lived in Maine yet had never listened to it until I moved to Boston a few years ago. Anne Hallward, a psychiatrist, was the host, so I’d wrongly assumed it was for issues about mental illness until I recently discovered it’s for talking about anything that’s hard to talk about.

The first thing I saw on Anne’s website for Safe Space Radio says it all: The show about the subjects we'd struggle with less if we could talk about them more. Heartened after reading her engagingly informative website and listening to a podcast, I reached out to her, first with an email, and then with a phone call. She graciously answered, and we spoke right away.

I was grateful that Anne could take time for an in-depth conversation about what it takes to create a safe space, and how safe spaces help us break through isolation. Our conversation alone was powerful enough to give me a boost to be more courageous in “going there” with the topics we usually shy away from. After speaking with Anne, I have a new motto: Courage is contagious.

INTERVIEW WITH DR. ANNE HALLWARD

Val: Since launching Safe Space Radio in 2008, you've interviewed hundreds of guests. Though you’ve covered a wide range of compelling topics, has there been a common, prevailing message from all your guests through the years?

Anne: Yes, there is a common message. People have a wish to turn their struggles into a gift for others. They give voice to hidden and silenced stories in order to help others. We started out with a focus on reducing the stigma of mental illness, so I talked with many people who had struggled with depression,  anxiety, or addiction.  Each guest wanted to share their story because they didn’t want others to feel as alone as they had.  They wanted to help to reduce shame and stigma.  Soon we began to include a much wider range of topics including homophobia, racism, sexuality and death and dying, and each guest brought the hope that the story of their struggle could be freeing to others.

Val: Because we all have a sense of what a safe space means, I would love to know what safety means to you.

Anne: I used to think that safety referred to the absence of physical threat. But now I think of it more internally, as the feeling of being able to be fully oneself. A common threat to a sense of safety is shame, and the forces, both internal and external, that tell us that we are not good enough.

So, safety begins inside ourselves and then extends to our personal relationships, our communities, our culture, and our nation.

Safety means being able to reveal our whole selves to each other and that entails two important things: feeling able to share our vulnerability as well as our strengths. The invisibility of either side is painful, so being safe means we are free to express both parts of ourselves. For example, when thinking of refugees, we often only see their suffering and don’t see their gifts. They had to flee their country, arriving here as people of color, needing help. The lens of a stereotype can blind us to their extraordinary gifts. For women, and people of color, and those with disabilities and other marginalized identities, safety is not only about honoring difference and vulnerability, it is about seeing and respecting strength.

Sharing our vulnerabilities as well as our gifts also applies to the topic of asking for help. I’ve learned from my guests that we avoid asking for help because we are afraid that our needs will define us. We fear that people will only know us through our needs or vulnerabilities. Indeed, if either our gifts or our vulnerabilities are invisible, it’s very painful. If I trust that you can hold both sides of me in your mind, and we can fully know each other—then that’s what safety means.

Val: I’ve never thought of safety in that way—to be able to show our vulnerabilities as well as our gifts. So, when you have a guest on your show sharing a painful ordeal in her life that was stigmatized and shamed, her strengths still shine through.

But, speaking of stigma, can we ever get rid of it?

Anne: Erving Goffman (a well-known sociologist) says, “Stigma is a sense of spoiled identity that you cannot wash off.” That’s why we need to share our strengths at the same time we share our vulnerabilities, so the needs don’t end up defining us in a stigmatized way. We need to see each person as whole. Safe Space Radio is one public health approach to fostering greater empathy and understanding in order to reduce stigma. As the famous gay activist, Harvey Milk, once said, “This is how the revolution will happen, one lonely teenager at a time.” Each time someone dares to come forward publicly with a silenced story, the culture shifts incrementally.

Val: Your message is powerful. But what if we are socially isolated and don’t have a safe person to turn to? To confide in?

Anne: Therapy has a tremendous value here. Many of us have had painful experiences of trying to share our vulnerability with someone, and feeling judged or rejected, so we might be understandably afraid to make ourselves vulnerable again and could benefit from a therapist with whom we can practice being vulnerable. Support groups are also spaces to practice being vulnerable. If there are no support groups that you feel you can belong to, then you could start your own. For example, Alyson Thompson, a biracial woman in St. Louis was struggling with feeling left out, isolated and feeling like there was nowhere she belonged.  She created a monthly meet up group through Facebook, called “Mixed Feelings” which has attracted a large group of other biracial folks in her area.

Val: That’s a great name for her group. Facebook was an ideal way for Alyson to launch her group. But looking at social media overall, do you think it decreases social isolation or increases it?

Anne: Social media can go both ways. It can bring people together (as it did for Alyson), but it also can be isolating because comparing ourselves to others can be a source of great loneliness. Research on social media is not my area of expertise, but social media seems to perpetuate “in your face” comparing of ourselves with others which can make us feel inadequate and alone.

Val: What inspired you to start Safe Space Radio?

Anne: From a young age, I’ve always been hungry to talk about the things that weren’t named--topics that were avoided and kept secret. When I was in medical school doing my pediatric rotation, I watched children being held down while tubes were being put in them, and watching their distress really troubled me. Of course, these procedures were necessary and life-saving, and were done with the best intentions, but it still troubled me, and I wanted to find out more. I began doing research on this topic, as well as research with my own medical records from my childhood.

I made a discovery. I found out that I was hospitalized for a serious infection as a toddler of 18 months and isolated for 10 days on an infectious disease unit. My mother had just given birth to my younger sister and was not allowed to visit me for those 10 days. This was a traumatic experience for me, and I had many nightmares throughout my childhood. Yet no one ever spoke about this. Childhood medical traumas like these are often unrecognized, because the intention of the doctor is to help the child. But from the perspective of the child, the experience may feel akin to assault.

But thank goodness for my medical records, and for medical school that uncovered what had happened to me! I felt a great sense of relief that my early experiences could be named. And I felt a deep passion to humanize our patient experiences by sharing our stories. I now ask new patients about medical trauma whenever I take a trauma history, and this has brought up so many stories of suffering that the person hadn’t fully understood or recognized as being legitimate trauma. I began a research project by interviewing women with a history of childhood medical procedures, measuring the long-term psychological consequences. The surprise to me was how grateful they each were to have their struggles validated, and how eager they were to let me use their stories to try to change and humanize medical practice. The experience of living with the shame of a silenced story, then discovering the power of telling it for my own healing and the healing of others inspired me to begin Safe Space Radio.

Val: That is an amazing story, Anne. It must have been so frightening at 18 months old to be isolated in a hospital room, separated from your mother among strange people in white coats doing painful procedures. It’s so important to tell this story.

Anne: I would like to share something I learned from guests on my show about what it takes to tell our stories. I used to think my role as the host was to create a really safe space so my guests could tell their most courageous story. But over the years, I’ve learned that I had it backwards; it was their courage that creates that safety for others and for our listeners. Where there is safety, there is someone who has had the generosity to make it so through their own courage.

When I was interviewing Ebrahim Rasool of the Truth and Reconciliation Commission of South Africa, he told me a story about the role that psychiatrists can play in fostering courage. He said people who had been tortured were offered an opportunity to see a psychiatrist before they gave their testimony to the commission. The role of the psychiatrist was to foster their courage, to help them tell their story and give voice to their silenced trauma.  He called this the work of “en-couragement.”  He told me that we should always think of the word en-courage as having a hyphen. He taught me that hearing the stories of others and being taken seriously when we dare to speak foster our courage. Courage is contagious. Learning about the meaning of en-couragement transformed my work as a clinician. An important part of my role as a psychiatrist is to foster courage.

Val: It rings so true when you say courage is contagious. We can foster courage in each other by telling our stories. That’s why Safe Space Radio is so powerful. I’m wondering what topics you will be covering this fall? Any new initiatives?

Anne: We are now in conversations with WBUR to be our distribution partner to NPR stations nationwide. We are creating a 4-part series that covers topics that are hard to talk about. The first show is called Apologies. What do we need to make our apologies truly healing? The second show is Asking for Help. We often underestimate people’s willingness to help and miss opportunities to be supported by others. Our third show is called Loneliness. How can we reduce the stigma and shame about loneliness? And finally, the fourth topic is Talking to Kids about Race and Racism. White people tend to feel awkward about this topic. How can we find useful ways to help kids understand and begin to address the disparities they see around them without reinforcing stereotypes?

Val: We could learn so much from courageous conversations about these topics. Anne, you’ve opened my eyes about what a safe space really means and about how our stories foster courage in ourselves and one another. People like you encourage us to be brave and to speak about the unspeakable things.

Thanks so much for your time today.

Anne: Thank you. I enjoyed our time.

Val Walker, MS, is the author of The Art of Comforting: What to Say and Do for People in Distress (Penguin/Random House, 2010). Formerly a rehabilitation counselor for 20 years, she speaks, teaches and writes on how to offer comfort in times of loss, illness, and major life transitions. Her next book, 400 Friends and No One to Call: Breaking Through Isolation and Building Community will be released in March 2020 by Central Recovery Press.

Keep up with Val at www.HearteningResources.com

There are days when dealing with this chronic illness just becomes too much and I simply want to curl up in a corner and wait for it to end.

I’m tired of all the doctor appointments, being sent from specialist to specialist, trying to explain over and over again the many symptoms I’ve been experiencing every day for the last 5 years.

I’m tired of pain, of weakness, exhaustion, difficulty breathing, night sweats, lack of sleep, trouble swallowing, muscle spasms, twitches and involuntary kicks and flinches, and all the other symptoms that have joined the party.

I’m tired of trying medication after medication, hoping to find one with minimal side effects or allergic reactions.

I’m tired of dealing with the insurance company and explaining to doctors why I can’t work. I’m tired of feeling like I need to convince everyone that there is something very physically wrong in my body when to the outside world I look normal.

I’m tired of doctors giving one diagnosis, then another, doing their best but not able to provide any words of comfort. First, they say I likely have ALS, then Amyloidosis, then Isaac’s Syndrome, then some other horrible incurable disease but no one can be sure yet, so I’m told to wait to see how it progresses. I’ve waited and I’ve waited, it’s been 5 years, can someone just tell me what the heck is going on?

I’m tired and weary. These are the thoughts that rise to the surface of my mind from time to time, and I’m starting to feel more comfortable with that now. I’m learning to give myself space and permission to feel what I feel when I feel it.

For me, this means…

• Allowing myself to feel sad on days when it’s really windy and I long to be windsurfing

• Acknowledging that I really miss having a healthy body that’s able to participate in all of the sports I love    

•  Having the courage to say no when asked to join friends for an evening out, trusting that they will ask again and not give up on me because of my illness

• Making peace with the reality of a life that is largely lived indoors, and being much less active than I would like

• Admitting the feelings of guilt I have about not being able to work and not advancing in my career

• Accepting the feeling, whether real or created in my own mind, that I’m being judged for not trying hard enough

•  Allowing myself to feel angry and frustrated because there is no end to this illness “treadmill”, and there is nothing I can do to change it.

I don’t have to save myself from these uncomfortable emotions by plastering on a brave, happy face when I feel like crap because let's face it, being chronically ill sucks. I don’t stay in this headspace all the time because I don’t feel this way all the time, but I do let these thoughts and feelings have their way with me when needed, knowing that I can always find my way back to a place of happiness and contentment.

Discovering the Buddhist art of being present to life just as it is, completely free from judgment, has been paramount in helping me learn to stay open to all of the thoughts and feelings that arise through chronic illness. The practice of remaining open-hearted toward all of my experiences has reduced my resistance to the various difficulties I face and has given me the ability to unconditionally accept the circumstances of my life. Viewing my challenges with kindness and treating myself with compassion empowers me to make good choices for myself and helps me think creatively about the life I want to live.

Self-compassion has stretched me into learning how to accept help and kind words from friends where earlier I would have tried to go it alone because I didn’t want to show weakness or be a burden to anyone. I’ve also learned that when I’m having a pretty rough time physically it’s okay for me to say, “I don’t have to have a ‘productive day’ today; today I’m watching Netflix because that’s the very best and kindest thing I can do for myself."

This willingness to kindly do what my body requires by accepting help or resting for weeks on end is no longer something that makes me feel less-than or weak; it provides what I need for living a full life. I’ve become truly happy again and am loving life and all the possibilities it holds, despite my illness and its restrictions.

Self-compassion has given me what I need to look at my life and situation in a way that says, ‘My illness isn’t who I am; I’m someone who still has a lot to offer to the world’. I’ve become excited about my life and what may be on the horizon instead of being fearful of what might happen. My illness has benefited me by giving me the time for some much-needed self-reflection, which has led to a greater insight into who I really am, how much I’m loved, what I love, and the many ways I can still add value to the world. It feels a little like I’ve been given the gift of a new life.

While I can no longer do many of the activities I love to do, like windsurfing, tennis, golf (just about any sport really), I have begun to discover that I am much more than the sports I played or the career I had. I have a wide variety of loves in my life that previously I either ignored or just hadn’t noticed. But because my health has thankfully required me to slow down, I am discovering them now.

I am so much more mindful of the beauty, life, and love I see all around me every day. I enjoy it in the deep and meaningful conversations and experiences I have with my wife, I experience it in the wonder of nature and the myriad shades of green that bloom at the beginning of spring, I see it in the care-free dogs that are affectionately taken for walks beneath my balcony every day, I hear it in the laughter and joy of the children playing at the nearby school, and just as nature and dogs never seem to worry about what’s in the future, these kids have yet to discover that worrying and looking ahead is a “thing”: they are just revelling in each moment.

Learning to live this way has not eliminated my illness and symptoms, but it has started to remove the suffering caused by focusing on what is wrong, what I can’t do, and what could go wrong. I have slowly found myself realizing that, although I’m not healthy, and physically I sort of feel like I’ve been hit by a bus every day for the last 5 years (and that bus always seems to back-up to hit me one more time just to be sure I don’t walk away without a limp - I hate that dang bus), I’m not suffering anymore. I’m learning to live life defined by what I love, not by my illness.

Because of poor health, my career may have stalled and my physical abilities may be limited, but my capacity to be curious, to take a deep inner look at myself, to learn self-compassion instead of self-pity, to try new things that I would have been too fearful to attempt in my old life, to be willing to take chances like I’m doing right now by writing, have flourished.

At 51-years-old I’ve finally realized that my purpose is to keep discovering what I love, doing what I love, sharing that love with others, and showing those closest to me that they are truly and deeply loved. Chronic illness might have the ability to impose boundaries on my life but it will never be able to set any boundaries on the things I love.

I find myself no longer waiting for my illness to depart and my life to arrive; I truly have a life I love right now.

Within the boundaries set by a mysterious neurological condition, Chad loves spending his available energy enjoying good food, getting lost in different worlds through writing and reading, strolling in the sunshine, watching sports and being an armchair quarterback. He lives on the Canadian Prairies with his wife (who is also managing her own chronic illness--what a fine pair).

My social anxiety plays me like a deceitful little game, except I spent the last 15 years pretending like I wasn’t on the court. The painful shyness I faced as a child, my inability to smile at any adults except my parents until the age of eight, the meeting with my fourth-grade teacher that my concerned mother sat through, afraid her daughter wasn’t voicing her needs: it’s always been you, dear social anxiety. My conviction in middle school that my friends didn’t care about having me around: that was you, too, wasn’t it? You pushed and pushed with such excruciating force until that stupid conviction became my reality. As did tears, insecurity, and a lack of reassurance I desperately needed. In high school you hid behind black skinny jeans, punk rock band t-shirts, and an eating disorder that wasn’t glamorous like in the movies. You danced around obsession, meticulous numbers, and crippling self-judgment. This is my reality, and the reality of millions of other people. And we are being ignored.

What if our society ignored the number of people who suffered from cancer each year? What if we claimed that cancer wasn’t real and its effect on lives was simply a conjugation of one’s imagination? If we stigmatized this illness, how would it impact those 15 million Americans who live with it? How would it make them feel? We don’t ignore those battling a physical illness because it’s usually easy to see how they manifest, yet mental health disorders can be harder to see and are thus treated differently.

The number of people who live with cancer every year is equivalent to the number of North Americans who live with social anxiety. That’s roughly 7 percent of our continent’s population. The disorder is more prevalent among teenagers and college students: an estimated 10 percent of college students suffer from significant social anxiety disorder, and general anxiety disorder affects an astounding 25 percent of teenagers. So why is the second most commonly diagnosed form of anxiety disorder is also so commonly overlooked? It’s challenging enough to live with a mental illness: its stigmatized reputation is an additional obstacle to overcome.

The stigma American society has so carelessly placed upon those struggling with social anxiety is rooted in insensitivity and judgment. The ignorance that drives this stigma not only discourages people from seeking help but attempts to convince them they have no problem to begin with. The pressure to break out of the shyness and nervousness becomes debilitating. When someone is repeatedly told their struggles don’t exist or their social awkwardness is just something they need to suck up and get over, we begin to believe it. I know I did.

My social anxiety made me question all the wrong things. I questioned the value of my curvy physique. I questioned my ability to be alone for hours at a time and not crave any verbal exchange. I questioned why people assumed I was so shy when I didn’t raise my hand in class, even though I always knew I had something to offer. At the time, I didn’t know what kept restricting me. I had questioned why everyone I knew was making friends at college, while my “friends” kicked me out of their roommate pool instead.

My first semester in college drained me. The pressure of constant socialization and having to present my best, bubbly, and agreeable self to everyone I confronted took a toll on my mental health. If I was anything but outgoing and always eager to go out on a weeknight, I was afraid my worst internal fear would come true—people would only pretend to be my friend because they felt a sense of pity towards me. I spend an exorbitant amount of energy and time rehearsing what tone I would use to respond to my name during attendance call in class, or considering which shoes would make the least noise when I walked into a 300-student lecture. One night my roommate asked me to make a phone call to the resident hall janitor because our window was jammed. I knew exactly the look I shot her, one brimming with such nerves and astonishment that makes someone wonder if they’ve suddenly sprouted a second head. She stared back at me quizzically and within seconds quickly muttered, “Never mind, I’ll do it.” The conversation ended abruptly. Why couldn’t I do it? Social anxiety.

But now I know it’s you, anxiety. Things make sense now: why I over-think the most basic social interactions, why I can’t present an accurate first impression no matter how hard I try, and why making friends is a hurdle I never fail to trip over. I need constant reassurance from the people in my life that I matter to them; that they want me to be there, and I haven’t just shoved my way in. I understand now that you are the driving force behind that heavy weight of insecurity that has traveled with me throughout my first year of college. But I want you to know that I am not afraid of you. Coming to college has given me the courage to speak openly about the daily challenges you provide. Because of you, I have discovered my passion of advocating for mental health awareness. I have overcome my eating disorder. I have made a friend or two, and I’m working on making some more. Thank you for being a constant in my life, dear social anxiety. Yes, you are a piece of me. But if you think you are going to define me, you are so painfully mistaken.

Mikayla is a sophomore at Boston College studying Communication with a minor in Management and Leadership. She is an active writer for Spoon University, an online food publication, and also enjoys playing guitar and spending time in New York City.

Another Conversation with Robyn Houston-Bean, Founder and Director, The Sun Will Rise Foundation

By Val Walker

In our first interview, Robyn shared how the support from her grief counselor, her friends, and her support group had all helped to hold her through her darkest months after her son’s overdose.

Nearly a year after his death, she discovered that community action was her path to healing, and started her own support group in Braintree, MA. Soon she launched The Sun Will Rise Foundation. Her insights about how support groups and community service can empower us after a tragedy sparked a whole new conversation.

Val: Can you describe what gave you a sense of purpose a few months after Nick’s death?

Robyn: After a few months of grieving, I attended an event with a group called Hand Delivered Hope that does street outreach for those living with active addiction and who call the streets home. Joining in with other families and feeling so welcomed and accepted, it suddenly struck me that I had a sense of purpose: My child was not here anymore, but I could help another child. Although my Nick wasn’t here, someone else’s child needed my love and support. This warm, friendly group and others, such as Let It Out and The Boston Grief Group, inspired me and gave me strength to start my own group in Braintree. I knew we needed a grief support group closer to where I lived because I finally realized the scope of all this grief out there in the world. It’s so important that support groups are convenient for local people to meet and come together easily. We need people to understand us and validate our feelings, so we don’t have to make excuses for our tears and our laughter.

Val: I would love to learn more about how helping others is healing for you.

Robyn:  To put it simply, helping others helps me. I know that if I didn’t go down the path of helping others, I would be at a different place with my grief. Helping others forces me to step out of my own pain and hear and feel the grief of others. The group members are so appreciative to have a place to put their grief. Nick was so compassionate and caring, and each time someone is helped with our group, I know he is smiling down on me.

Val: It amazes me that you went straight to the Braintree Town Hall to ask about starting a support group. How did this happen?

Robyn: I knew a person who worked for the mayor, so I floated the idea of having a group at the town hall. Right away that person thought it was a great thing for our town to do. What a perfect way to say “no” to the stigma about the opioid crisis by having this group right at the Braintree Town Hall! After the group was going for a while, we had our first fundraiser for the foundation right there at the town hall. We have been lucky because not all communities have embraced the idea that substance use disorder can happen to anyone, and that we all need to work together to help prevent it.

Val: What was it like learning to be a group facilitator?

Robyn: I doubted myself very much at the beginning, but I received such great support from some of the facilitators. My doubts were erased very quickly. Figuring out the logistics, learning about facilitating, getting the word out so people in grief could find a tribe—all this kept my mind busy and kept me going in the early days.

Val: How is having a purpose contagious with other families affected by the opioid epidemic?

Robyn: I'm amazed how powerful it can be when people who are usually on the margins are given a voice. Grieving is hard enough, but on top of that, it’s a stigmatizing death, and it can cause people to focus inward and avoid dealing with day to day life.  It can cause grievers to be left alone in their grief by friends and a community that doesn't know how to deal with loss. Being part of our community, a place where people are safe to explore their feelings no matter what, a place where we can share anger, confusion, sadness, hopelessness, guilt and not be judged is a powerful thing. Having someone there to say, "Me too, I've felt that way" can really make a huge difference in our lives. Once you know you aren't alone, that there are hundreds of people out there who have felt your pain and have survived-- not only survived but lived again after loss--can be an incredibly healing realization.

Here are some ways that support groups have helped to turn grief into action:

• People build new friendships.

• They advocate for change in their own towns.

• They work to change laws.

• They gather together in prevention activities.

• They support the newest members of the group.

• They find their voice again.

I'm so glad the people who led the path before me gave me my voice, and that I have played some small part to help others find theirs.

Val: Robyn, you have been so generous with your passion and wisdom. Thanks so very much for all you have done.

Robyn: Thank you for giving me this opportunity to talk with the Health Story Collaborative.

Recommended Resources

• Robyn’s Foundation, The Sun Will Rise

• Team Sharing Inc., a national organization of parents who have lost children

• GRASP: Grief Recovery After a Substance Passing

• Hand Delivered Hope, Boston 

• The Opioid Project, created by Annie Brewster, MD, and artist, Nancy Marks

• Robyn Talking about Her Son, Nick, recorded on the Opioid Project

Val Walker, MS, is the author of The Art of Comforting: What to Say and Do for People in Distress (Penguin/Random House, 2010). Formerly a rehabilitation counselor for 20 years, she speaks, teaches and writes on how to offer comfort in times of loss, illness, and major life transitions. Her next book, 400 Friends and No One to Call: Breaking Through Isolation and Building Community will be released in March 2020 by Central Recovery Press.

Keep up with Val at www.HearteningResources.com

My mistakes are like wildfires: disfiguring the entire landscape, forests turned black and flat and charred beneath my feet. After something like that, people will always look at you like a walking natural disaster, always smell the air for smoke. I would do anything to take it back, to just pop the cap back on that bottle and move on with my life, but that didn’t happen. There’s that saying about something being a tough pill to swallow, but I guess I never had that problem. Pills were easy. Too easy.

The summer before I started high school, my dad and I moved to a small town in rural Oregon. It was deceptively picturesque, with a historic downtown and snow-capped mountains lining the horizon. My dad said it looked like a Christmas card, but to me, it felt like a snow globe. “Come on, it’s a fresh start in God’s country. It’ll be good for us,” he said. I knew the divorce hadn’t been easy on my dad, but this didn’t feel like a fresh start. It felt like a life sentence.

The town felt barren. Untouched. Lonely. Of course, there were other kids my age in the town, and I went to school with all of them. You’d think this would help with the overwhelming isolation, but it had the opposite effect. Throwing together a few hundred chronically bored, desperate-for-trouble teens is about as good of an idea as it sounds. It became us against the world, a case study in desperation and mob mentality. Without that anger and desire for more, what did we have? There was nothing for us to look forward to besides escape. Every day in that tiny school and that tiny town felt the same, like we were living in a time loop. It would almost be cool, like a science fiction movie, if it wasn't so abysmally boring. So we determined that if we couldn’t get to the outside world just yet, we would bring the outside world to us. Like the stupid kids we were, we thought the outside world was like one giant rager, so we threw some pretty killer parties. I never understood how the word “killer” could both mean something good and bad at the same time. Now I do.

Flash forward to a Friday night sometime during my senior year. We had survived yet another week of classes and teachers and homework; graduation was just around the corner. We were so close to being done. So close. Naturally, we decided to celebrate the only way we knew how: we threw a party. We kept the house dark, the music loud, and the blinds drawn. For those few brief hours in whoever’s house we were crashing that weekend, we weren’t trapped in rural Oregon. We were living in L.A. or New York or some other far away city. Our hearts slammed inside our chests, echoing the beat of the music and chanting for more, more, more. For those few brief hours, we were free.

Freedom has a price, though. That’s the part they skip in the movies. The characters have a crazy night, something goes wrong, chaos ensues as the characters try to fix whatever sticky situation they had gotten themselves into, the problem works itself out, and the characters laugh about it afterwards and have a sentimental moment. Cue happy music. Roll credits. The end. That’s not how it happens in real life. That night, we made a mistake. We started a wildfire. The moment my friend switched out a beer bottle for a pill bottle, I should have known to walk away. I should have said no, but that night, I felt invincible. I thought nothing would hurt me, not when I was so close to my life finally starting. I looked around at all my friends, drunk and high and so alive, and I took one. Oxycodone didn’t sound scary, not like heroin or cocaine or meth. They gave it to kids when they got their teeth pulled, so how bad could it be? One pill wouldn’t hurt. I had stopped saying no a long time ago.

If only I had known that one pill would turn into a habit, and a habit would turn into a full blown addiction. Soon, I had pills in my locker, in my car, in my bookbag, in my purse. Any space I inhabited on a regular basis became my drug cabinet, my hiding place. It became increasingly difficult, however, to keep my addiction going. I was in high school, and my dad would be furious if he found out. I didn’t have nearly enough money to keep buying the pills I wanted—no, needed. I found myself at a new low.

Hooked on the high and stupid enough to keep my problem a secret, I used up the last of my money from my summer job and bought heroin for the first time. It was from a kid at my school; the deal was cheap and quick. The needle was intimidating at first, but not as scary as the thought of withdrawal. The tremors, the sweating, the chills, the pain. Itching for a high in the tiny bathroom attached to my bedroom, I closed my eyes to not focus on the pinch of the needle. I didn’t think about what would happen once this high wore off. I just let the wave of euphoria wash over me and felt a sudden calm. Looking in the mirror, I could see my first bruise already beginning to show. I changed into a sweatshirt before my dad came home. I would wear long sleeves for years to come.

If taking oxycodone for the first time crossed a line, shooting up with heroin for the first time obliterated it. Every day, the drugs worked less and less, and I had to buy more and more. I was covered in bruises. Anywhere that could be hidden with jeans or long sleeves was a canvas of blue and brown bruises and puncture marks. If there was anything drugs taught me, it was that I was a good liar. It seemed I could hide anything from my dad. Until three years later, when I finally hit rock bottom.

I was in college. I mean, I was enrolled in college, but I rarely even showed up to class. My grades were slipping and my attendance was a disaster, but I could never seem to make it through the day. Not without getting high. I’d gone home early that day, exhausted and ready to add another bruise to the collection. If I had counted how many times I had felt the sting of a needle, it probably would have been enough to have given myself a full tattoo. One minute I was in the bathroom, pulling my sleeves down to hide the shameful thing I had just done, and the next, I had stumbled into my room. I laid down and closed my eyes, which is apparently how my dad found me. Prone. Unresponsive. Barely breathing. I woke up a day later in the hospital, my dad sitting next to the hospital bed with his head in his hands. He lifted his head and looked at me, my eyes red and bloodshot. He didn’t say anything. He just looked at me. I told him it wasn’t his fault, but I could tell he didn’t believe me. He felt the burden of my secret as much as I did. He sat there and looked at my arms, a stark picture of my addiction. He checked me into rehab the next week.

Rehab was not like the hospital. The hospital was cold and smelled like rubbing alcohol and formaldehyde. It was sterile and felt like death. Rehab, on the other hand, was filled with warm colors and art classes and friendly faces. Withdrawal felt like dying, but at least it wasn’t death. It was resuscitation. Revival. Resurrection. I left a month later detoxified and rejuvenated, ready to pick up the pieces of my life and live as if that night at that fated party never happened. Too bad good things almost never last.

I would overdose three more times. Each time, my dad sent me back to rehab with a little less hope in his eyes. I had given up a little, too. During my fourth stint in rehab, I met Rachel. She was nineteen, bone thin, and pregnant. It turns out that if you do heroin while you’re pregnant, the baby gets addicted, too. If the mom tries to go cold turkey and stop feeding her addiction, the baby also goes through withdrawal and can die. So there sat Rachel, medicated on methadone and just waiting until her nine-and-a-half month wait was up so that she could get her act together. When I asked her about her situation, she said, “If it was just me, I probably would have never gotten clean. But it’s not just me anymore, and Child Protective Services can get involved at any time. My family doesn’t think I’ll make a good mom. I need to prove them wrong. I just made a mistake. It was one time.” It was this heartbreaking admission that made me see that if I didn’t get clean, I could be in Rachel’s shoes in five, ten, maybe fifteen years. I could never drag my kids into this. Never. That was my last trip to rehab. I never touched a needle again.

Five Years Later

“And that’s how I got here. I’m almost five years clean, and I’m finishing community college in a couple of months. I already have a job lined up after I graduate.” Claps and congratulations filled the room as I announced this news, a success story that the other recovering addicts in the room could aspire to. Heroin Anonymous had taken up my Monday nights for the past four years, and in every meeting I attended I felt like I was earning my place back in society. Rachel sat across the room with her daughter, who was fast asleep in her lap. I wondered if Rachel would ever tell her what these meetings were, who she used to be. My father sat next to me, smiling and proud of my recovery.

It is true that some mistakes are like wildfires. They burn down everything that was once familiar, and you are left with only the ashes. But that’s the incredible thing about wildfires: after the flames have died down and the heat no longer persists, the scorched ground becomes green again. Life always finds a way. Things grow back. It may never be the same, but it sure is something worthwhile.

Shannon Lally is currently pursuing a double major in Psychology BS and English with a concentration in Creative Writing. After college, she hopes to pursue law in a creative field, such as book publication.

An Interview with Robyn Houston-Bean, Founder, The Sun Will Rise Foundation

By Val Walker

INTRODUCTION

Robyn Houston-Bean lives in Braintree, MA, and manages an insurance agency for four days a week. She is married to John Bean, a sheet metal worker, and has a daughter, Olivia, age 25, and a son, Jake, age 21. Amazingly, around her demanding business and the needs of her family, Robyn runs a dynamic, fast-growing organization, The Sun Will Rise, dedicated to serving families affected by the Opioid epidemic.

Three years ago, Robyn’s oldest son, Nick, died of an opioid overdose. Just one year after his death, finding a way to channel her grief, Robyn began building her foundation in honor of her son, and soon engaged hundreds of families with support groups, inspirational talks, and fundraising events.

I wanted to understand how Robyn was able to express her grief through community activism, and more deeply, to explore how she found comfort, understanding and support for her grief.

One grey morning in February, I enjoyed a rich, two-hour interview with Robyn. Her candid insights about how grief isolated her, and what it took to break through isolation and turn to others was a powerful story in itself. She didn’t hold back from “going there” to describe her first devasting weeks after Nick’s death. Her story is so compelling and important that I have written her interview in two parts. Part One is about how she broke out of the isolation of her grief. Part Two is about her healing adventure of developing her foundation, The Sun Will Rise.

Right at the beginning of my conversation, Robyn made one thing quite clear: We don’t ever “get over” nor completely recover from our child’s death, but hopefully, we learn to live with loss—and if possible, find a sense of purpose to guide our grief. For Robyn and many who support her work, community activism for facing the opioid epidemic has given devasted people a sense of meaning, purpose and belonging.

INTERVIEW

Part One: Breaking Through the Isolation of Grief

Robyn didn’t hold back from “going there” to describe her first devasting weeks after Nick’s death.

Val:  Can you describe the early stages of your grief—starting at the point you think it’s best to start?

Robyn: First, I should tell you about the night before he died.  I’ll never forget the night before Nick overdosed. Strangely, out of the blue, before Nick came home from work, my daughter, Olivia, said, “I have a bad feeling about him.” As soon as he got home, he walked straight to the fridge. When Nick put his face into the fridge I made him look at me because of my daughter’s feeling that something didn't seem right. I put both my hands on the sides of his face to make him look at me.

I asked, "Are you okay?" He told me, "I'm just tired-- I'm going to bed, why?" I answered, "Because I love you, and don't want anything to happen to you.”

He replied, "I love you too. I'm tired and going to bed. I have to be up for an early shift." It still haunts me that I didn't know something horrible was going to happen that night.

The next morning as I was headed out to the gym for my usual workout, I was surprised to see Nick’s car in the driveway, as he usually drove to work on the early shift. I wondered, why was Nick’s car still there? I called upstairs towards his room, “Hey Nick, are you up there?” It seemed so weird he was not answering as he was such an early morning kind of guy. I went to his room and found him lying motionless in his bed, cold and blue. I tried to revive him with Narcan but I could tell it was too late. I screamed a horrible, guttural sound—a sound I have never made in my life. Still, my daughter called 911. The EMT and police came and took him to the hospital, but he was gone.

Val: What a horrible shock—to be the one to find him dead right at home. Before his death, had there been any signs that you sensed Nick was using again or hiding anything?

Robyn: Not really. It was such a shock, and there really are no words to describe this kind of shock. He was doing so well and so proud of his new job as an Emergency Services Technician. He had just finished his certification and was feeling a real sense of purpose and mission in his life. He told me almost every day how he loved his work, and loved being so helpful for others, saving lives. But…perhaps, he saw too many awful things during emergencies and rescues, and maybe some things had triggered him. I will never really know.

Val: What were those first weeks or months like for you?

Robyn: Everything just stopped. I just stopped. All I could do was sit on the couch. I had always been a super-energetic person who loved fitness competitions and worked hard to be the best at anything I wanted to do. I was once the unstoppable, super-achieving woman who never looked back.

But when Nick died, I didn’t know how to be me anymore.

Unfortunately, my husband and youngest son didn’t know how to relate to this person I had become—this woman who just stopped everything. And my friends tried to text me and chat to cheer me up. But I couldn’t do chit chat anymore. My daughter could understand somewhat, but she was my daughter and was grieving in her own way. For me to grieve, I needed to have some of Nick’s things around me on the counter by the kitchen—his little harmonica, his coin collection, little pins he wore, his pocket knives, but this bothered my husband to the degree that this caused arguments. He didn’t want to talk about the death of our son or look at Nick’s stuff because he just wanted to push the memories away to get through the day. I was the total opposite from him in how I grieved. There was an awful tension between us. I felt lonely with my grief because no one in my family could understand how I was grieving as a mother. And I was anxious that my friends were trying to fix me and get me to socialize or get back to the gym. No one seemed to accept that the person I was before Nick’s death—that once unstoppable Robyn-- no longer existed.

Val: It sounds so isolating for you. No one in your family is the right person to talk to, and your friends don’t seem to understand how to relate anymore, even though they are trying. What in the world did you do?

Robyn: I had a gut feeling that a grief counselor might help me. For a referral, I asked a pediatrician I liked for years (who had treated my kids when they were younger.) He gave me the name of an excellent therapist, and fortunately I felt comfortable with her.  I opened up and shared everything with her. I was especially concerned about how to cope with my husband and children who weren’t grieving in the ways I was.  A few weeks later, I asked my husband and kids to join for family therapy. They weren’t too thrilled about it, but they cared enough to go for a few sessions. I was relieved this therapy resulted in finding a solution about how I could have Nick’s things around me without this upsetting my husband. We decided to put Nick’s little things in a box on the counter, so when I wanted to connect with Nick I could just get his things out of the box and then put them away. Believe it or not, this simple solution made a huge difference for me and my husband!

Val: Wow. I love what you just said. And what a perfect solution to use the box for Nick’s things.

Robyn: Eventually my daughter, Olivia, started going into the box, getting out his harmonica and coin collection, and sharing memories about Nick with me. But still…I had a long way to go to get used to my new normal without Nick in my life.  Indeed, we all had new normals without Nick in our lives.

But one day a thoughtful friend connected me on Facebook with a friend of his named Carole who had recently lost her child to an overdose. Very soon we were talking on the phone. We could “go there” with the horrible things that no one else could talk about. For our first face-to-face meeting, Carole met me at the cemetery where both of our kids were buried. Can you believe it—both of our kids were in the same cemetery lying near each other! We sat on the grass and cried together. We made a pact with each other that we would “take care of our kids” every day by going to the cemetery every day. We agreed that no one could rob us of our grief and the time we needed to “take care of our kids.”

Soon another friend connected me to other grieving parents through Facebook.  In a few months we found out about an organization called Hand Delivered Hope, a group of concerned citizens affected by the opioid epidemic. This group provided street outreach to people who have been impacted, meeting their basic needs so that recovery was possible. Hand Delivered Hope had organized a benefit event where participants were bringing bags of comfort items. My sister and I attended this event, and to my surprise, I made friends easily with other parents and family members who had lost loved ones or had loved ones still struggling. I didn’t feel judged or that I had to censor myself from talking about messy and awful topics related to addiction. They busted through the stigma of addiction as I was accepted and welcomed. They asked about Nick, and how I was coping with my grief. They shared their own stories about broken relationships and how their kids were destitute, misguided, broken, or had died through an overdose. It was a safe place to talk honestly as a group, and I immediately realized how healing it was to have this open, warm environment where I could be a grieving mother—rather than trying to be that unstoppable, super-achiever person I used to be. This experience of feeling so welcome with my grief was a big turning point for me.

I had a huge revelation, and it all came down to this: My child was not here anymore, but I could help someone else’s child. And I could help someone else who was grieving to feel warmth and acceptance. Braintree needed more support groups, fundraising events, educational events, and resource development. Soon after my revelation, one thing led to another. I met another wonderful friend named Rhonda who was involved with a grief support group at GRASP in Brighton. She told me there was no grief support group on the south shore of Massachusetts. And things started moving from there—it was my calling. I believed I was the one to do this.

Val: Thankfully, you found a group where you didn’t have to hide your grief, and that inspired you to start your own support groups. What about your older friends? Did they fade away? Or were you able to maintain those friendships alongside the new friends you were making?

Robyn:  Yes, I have been able to keep most of my old friends. I finally managed to figure out how I can fit my old and new friends in my life. First of all, these two groups of friends are two separate groups. I call my old friends my “before” friends (before Nick’s death) and my new friends my “after” friends. The “after” friends definitely “get me” more easily and I can talk about the good, the bad and ugly stuff with them. However, I truly love my old friends and I tend to do more fun and lively stuff with them—which is just fine for short periods. I don’t want to be a “downer” with my “before” friends. My “before” friends still want to see me laugh and socialize, and I’m able to do that on some occasions. I must admit they can still make me laugh. I am glad to have both groups in my life. But I couldn’t live without my “after” friends.

Val:   Robyn, what a creative way to make room for all your friends in your life. That also sounds like a beautiful way to embrace your “before” self with your “after” self.

Robyn: Thank you for saying that. It’s all taken a long time.

This concludes Part One of my conversation with Robyn. In my next post on the Health Story Collaborative, Robyn will share her healing journey with developing The Sun Will Rise Foundation. 

• Recommended Resources

• Robyn’s Foundation, The Sun Will Rise

• Team Sharing Inc., a national organization of parents who have lost children

• GRASP: Grief Recovery After a Substance Passing

• Hand Delivered Hope, Boston 

• The Opioid Project, created by Annie Brewster, MD, and artist, Nancy Marks

• Robyn Talking about Her Son, Nick, recorded on the Opioid Project

Val Walker, MS, is the author of The Art of Comforting: What to Say and Do for People in Distress (Penguin/Random House, 2010). Formerly a rehabilitation counselor for 20 years, she speaks, teaches and writes on how to offer comfort in times of loss, illness, and major life transitions. Her next book, 400 Friends and No One to Call: Breaking Through Isolation and Building Community will be released in March 2020 by Central Recovery Press.

Keep up with Val at www.HearteningResources.com

Elaine Scarry, Harvard English professor and advocate for narrative medicine, said: “To have great pain is to have certainty; to hear that another person has pain is to have doubt.”

We can never truly know what someone else’s pain feels like, or truly understand another’s experience with illness or injury.  But we are mistaken if we think that this gives us reason not to try.

As two sophomore Nursing majors and Medical Humanities minors at Boston College, we feel a personal responsibility to give voice to stories of pain—including the suffering associated with physical, emotional, and mental illness and stress we have heard from our peers. We also feel called to elicit and validate the stories of pain which haven’t yet been told. Many suffer silently every day on campus, and our hope is to provide space for these people to share their stories and thus feel less isolated.

“Underheard HSC” (@underheard_hsc), the Instagram account we’ve launched, is dedicated to sharing anonymous short health stories and art pieces by and from college students. It aims to make stories of illness, disability, and loss in college more accessible to the students facing these challenges, to encourage those who aren’t naturally inclined to write about their experiences to share their stories, and to help those who haven’t experienced such challenges to join in conversations about health and illness with those around them.

In college, there is great stigma around diseases or injuries that are considered unusual in our age group. We are expected to be young, strong, and resilient to whatever comes our way. This presumption of healthiness makes it challenging for those who undergo debilitating illnesses to express themselves. When these experiences are under-discussed, it leads to misunderstandings about the reality of being sick, and about how to best respond to and care for those around us who are experiencing these challenges. For this reason, we are particularly interested in reaching college students through our work as interns at Health Story Collaborative.

Our hope is that Underheard HSC becomes a space where young people feel less alone in their pain and comfortable enough to submit quotes or short stories about their own health.

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Each of us has or will deal with health challenges in our lifetime. It’s time to start talking about it.  By taking the time to listen to and express care for the stories of our peers, we will not only be showing them kindness, but we will also begin to make space for a kind of storytelling which can lead to emotional healing. Our greatest ambition is to inspire better communication and deeper human connection. We hope that this platform welcomes students to share and serves to validate and honor every health story.

Supporting unique projects and starting new conversations can sometimes be scary, but the barriers to discussing the difficulties of illness which we have comfortably hidden behind until now are the very reason we must take a leap and open our minds to the infinite stories of illness and pain existing around us.  Please join us in taking a small but important step in showing our peers that we care: follow @underheard_hsc on Instagram.

For questions or to submit a story, please email Evelyn and Heena at hscinterns@gmail.com.

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

Evelyn Caty is a sophomore at Boston College majoring in Nursing and minoring in Medical Humanities.  She discovered for herself the utter inexpressibility of pain when she suffered from undiagnosed back pain for many years, and she hopes to use this knowledge to encourage her peers struggling with health challenges to begin healing through the telling of their own stories. She, too, hopes to use her passion for the medical humanities and for storytelling to become a compassionate and effective nurse.

The fact that Dominicans of Haitian descent are treated as foreigners in their own country was hinted at before we even arrived on the island. Contemporary Haitian immigrants to the Dominican Republic and prior generations experience racism and economic exploitation on a daily basis. Our Global Health service trip team was mostly white, so this discrimination would not affect me or many of the other students. However, a black girl from New Jersey was warned that if our guagua (bus) was stopped while in transit, she would likely be asked to step out by military personnel in an effort to control immigration from Haiti to the Dominican Republic. Luckily, we avoided this situation, but during my week on the island I observed many occasions of blatant racism that interfered with healthcare access for Haitians.

Each day our team traveled into “bateys” – communities – outside of Monte Cristi to support the local health center and their mission of guaranteeing patients the right to health. In the early 1900s, banana companies established bateys for the Haitians and Dominicans who worked the fields during the day, to provide them with a place to stay overnight. Many banana companies have stopped supporting the bateys, making life extremely difficult for those who live there – fruit pickers have been left without the means to support their families, and the economy suffers.

While I witnessed impoverished living conditions in all of the bateys, the Haitian batey was the most disadvantaged by far. We arrived at 7:00am to the abandoned banana packing plant and quickly transformed the area into a clinic. 30-40 patients were already lined up. Many of them had walked miles. Some of them had no shoes. Others were carrying one child on their back and another in their arms. I quickly gobbled down my granola bar while huddled over; in hindsight, I should have eaten it on the bus beforehand, away from the patients, considering many of them don’t have such easily accessible food.

As a pre-dental student, I had been assigned to spend the morning helping the dentist and her assistant. What struck me most were the Haitian children’s reactions to seeing the dentist, or lack thereof. In the U.S., it is not unexpected for a child to tantrum when propped up in the dentist’s chair. They clench their teeth closed and turn away from the approaching dentist’s hands. They cry for Mom or Dad whenever it’s deemed safe to open their mouth and howl. In contrast, not once at the pop-up clinic did I see a Haitian child fight the dentist. Not once did I hear them scream at the top of their lungs. Instead, often there without a parent, the child would lie on the chair with his or her mouth wide open, totally vulnerable, and not make a move or a sound. The dentist would scan and scrub and scrape, and then the child would sit up, lean over the side, and spit a mouth full of blood and plaque into a cardboard box filled with dirt. There were no stickers to reward their bravery or high fives from Mom or Dad. The kids were sent off with the only toothbrushes we had (boring adult ones instead of the fun, cartoon-themed ones often handed out in the U.S.), and started the long journey home.

I also experienced the impact a language barrier can have. Communication is perhaps the most important element in building a positive doctor-patient relationship. My day in the Haitian batey where everyone spoke Creole reminded me of this. Not being able to greet, instruct, or comfort these patients made me feel helpless. I still remember a middle-aged woman who let out groans so deep I couldn’t help but furrow my brow as I imagined her pain. “¿Qué le duele? / What hurts?” I asked. It was challenging enough to understand the woman’s response as she gritted her teeth and whimpered in agony, but when she answered in Creole instead of Spanish, I was filled with frustration. The language barrier made it difficult for me to clearly listen to or readily comfort her. Fortunately, we had a team of translators helping us. They translated from Creole to Spanish, and then another group translated from Spanish to English. Nonetheless, there was no way for us students or the non-Creole-speaking American doctors to directly communicate with her. I found this to be extremely limiting in assessing complaints and prescribing medicine.

As a pre-dental student majoring in Spanish, I hope to one day be able to combine my passions in order to communicate and empathize with both English and Spanish-speaking patients. My week in the D.R. affirmed the value of incorporating a Spanish language education into my dental career. Had the groaning woman spoken Spanish, I could have reassured her: “You were right to come here. Everything is going to be ok. We are going to help you.”

My week in the Dominican Republic ignited in me a desire to fight for equal access to healthcare worldwide. I will never forget the struggle of those who live in the bateys. Indeed, they will inspire me as I continue on my journey, and I hope to return one day as a practicing dentist. Until then, I plan to serve in my local community, as great disparities also exist in our own backyard.

Rachel is a junior at Washington University in St. Louis, majoring in Spanish and minoring in medical humanities. She aspires to practice dentistry and cultural humility in a medically under served area.

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

The event was held on a damp evening last spring. I took the subway to the Charles Street stop. As I navigated the streets in front of Mass General Hospital, I observed the traffic controller directing the EMT’s parking the incoming ambulances. I was struck by the sheer number of personnel required to deal with each traumatic predicament. As I watched, I was immediately brought back to the day I required emergency brain surgery: I had been rushed to this very place, where a neurosurgeon on call performed the operation. I thanked my lucky stars that day was almost three years behind me. Now I was at MGH by choice, on my own terms.
The panel was held in a cramped nearly windowless conference room. I settled into a chair, and looked around the table. The MGH doctors were easy to spot in their standard white coats, and I recognized the third doctor from the Epilepsy Foundation’s website. The fourth practitioner was the nurse who was leading the meeting. The patient turnout was even smaller than I expected: There were four of us, one patient for each presenter.

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

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

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

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

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

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

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

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

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

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

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.