Posts tagged Perspective
When the Best Prescription is Not to Cure

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 Breast Cancer: Reflections Sixteen Years After Diagnosis

By Leah Meyer

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

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

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

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

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

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

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

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

Valerie—Not A Diabetic

I'm not a diabetic, I’m a person with diabetes. I was diagnosed with Type 1 diabetes in 1993. I thought my year of exhaustion, weight loss and crazy mood swings were the result of a bad marriage and the stress of parenting 2 active boys, ages 3 and 6. But for some reason, that day, after drinking my umteenth glass of water which did nothing to quench my thirst, I stopped and thought about the symptoms I'd been living with for over a year that suddenly seemed to coalesce in a moment.

I called the doctor and described my symptoms. “Do you think I have diabetes?” No one was going to tell me that over the phone. I went in for a test and 24 hours later I had a diagnosis: Type 1 diabetes. A week later, I was staring at a much-xeroxed piece of paper titled Diabetic Diet with boxes and columns to fill in: food item on the left, amount in ounces and cups on the right. There were other pieces of paper: Diabetic Eating Guidelines and Diabetic Food List. The diagnosis was traumatic enough, but these guidelines and sample diets shrank my world into one miserable, tunnel-visioned focus. I was a diabetic–walkers, blindness and kidney failure loomed on the horizon.

But I followed the guidelines and life came into balance. I gained weight, which was good though initially unappreciated. After months of uncontrolled high blood sugars, I had lost quite a bit of weight from an already thin frame. A few months before my diagnosis, friends began saying, “You look gaunt. Are you OK?” They said “gaunt” but I heard “thin,” another reason it took me so long to see a doctor. I was eating what I wanted and loosing weight–how could this be a problem? But of course it was.

In those initial months I faithfully followed the Diabetic Diet. I ate the suggested amount of food from the suggested food groups and took the suggested amount of insulin to cover the carbs I was faithfully counting. One night, after gobbling down half a peanut butter and jelly sandwich to cover plummeting blood sugars (I still had no idea how much to eat to offset a low), I was hit by a bolt of insight. I said to myself, “I’m going to fit diabetes into my life not the other way around.” In other words, I would define what I ate and when. I would define how I lived my life, not diabetes.

It’s taken years to develop healthy self-care practices. I'm not rigid but I have routines–routines I created myself not routines imposed upon me. I’ve come to believe wellness has 3 interactive practices: pursuit of knowledge about the condition, a creativity practice, and a mindfulness practice (or some kind of spiritual practice). The word "practice" is used deliberately to mean an activity that is part of life, essential to life and life affirming.

My blood sugar control can still be erratic and difficult at times. Sometimes I feel overwhelmed, irritated and discouraged. Feelings can’t be avoided but they can be handled with skill and kindness. Creative, meditative practices have encouraged me to take care of myself with kindness and compassion, using knowledge, creativity and mindfulness. There are no quick fixes. Sometimes situations turn around rapidly after a diagnosis but deep and lasting change is the work of a lifetime.

Words are powerful. I may be dealing with a condition or illness but I am not the illness or the condition. The word "diabetic" defines me as a disease. I’m not. Sometimes groups or individuals claim a noun or adjective as a way to re-claim power, but I’d rather nix labels altogether.

I actively explore the question, "what does it mean to be truly healthy?" Advances in technology, nutrition and exercise are important, but I want creativity and empathy at the center of my life. I'm a public health professional, health advocate, editor, writer, artist, parent, and so much more. I also happen to have type 1 diabetes. That perspective has deeply affected how I take care of myself and interact with others.

About Valerie:

Valerie has lived well with T2 diabetes for 23+ years. She credits a mindfulness meditation practice, access to health care, healthy food and exercise, a circle of supportive friends/family, her creative pursuits in visual arts/writing–and luck–to being complication free so far. She works in community health, and trained as a diabetes lifestyle coach. She believes both clients and providers would benefit from narrative medicine practice in the healthcare system.

Depression and Meaning Making

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Originally published on WBUR CommonHealth Blog, April 20, 2015

Resources:

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

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

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

 

Seeing Stories: A Profile of Bradley Lewis

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

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

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

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

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

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

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

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

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

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

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

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

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

More about Brad Lewis:

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

More about Annie Robinson:

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

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

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