It was quiet that afternoon. Weekday afternoons were always quiet in our house. Dreamy, lazy, languid in the heat of summer, resting on the downstairs couch I heard you calling me from upstairs. Your voice had that same timber, will always have that same timber every time you call me upstairs. I rose, hesitant to leave that sunlit couch, but your voice again Claire, come up just a moment! there again beckoned me up, up into that bathroom. I entered the room and met eyes with you and you said I just need your help for a moment in that hushed way, in that way that made me know it was ME who needed to help you, and it couldn’t be Jill. That hushed language between parents and older siblings is one you learn from the moment that second child is born. Out on the smooth counter-top sat Dad’s old electric razor. I lifted it, felt it weigh in my hands. I knew what was coming, God we all knew it was coming. It had been coming since April, since that hushed conversation, that same hushed language in the car on a same sunny afternoon, that same don’t tell Jill had weighed the same as this razor weighed now. You sat in that chair and stared back at me from the mirror, but your eyes weren’t meeting mine, not really, and mine weren’t meeting yours, not really.

You looked like a child then, like I did when I was five and waiting for Dad to comb my hair, and you looked up at me, your child, in that same way. Waiting for me to comb your hair. The razor felt heavier now, the weight of that hush felt heavier now, everything was heavier now the moment you looked up at me like that.

I turned the razor on.

It became real then.

I fumbled my way through the already thinning patches of your scalp. I felt unsure, unready, wielding that razor. Shouldn’t I know how to do this, shouldn’t everyone know from the movies? They do this all the time in movies, this moment right here. But they don’t tell you about how heavy that razor is in movies, they don’t tell you how much steel can weigh when you look at me like that.

You made a joke like you always do - that Irish bleak humor never turns off, not even for a second. I laughed. I appreciated it.

You could tell how hard this was, I could tell how hard this was, but we just kept staring and not seeing, not actually. But we knew, and we kept that secret, you and me, between ourselves and the hushes and that heavy, heavy razor.

I finished and cleared some stray hairs from your crown, and you sat (admiring yourself, I liked to imagine). Seeing yourself, that terrifying feeling of seeing yourself, and while you were seeing yourself so was I. I was seeing you, actually. For the first time, maybe.

You were thinner now, medications already starting to wear on you. But you looked determined. But you looked scared. But you looked at me and I knew you were looking at me as equal now, because I was seeing you for the first time. How is it that after sixteen years I am only now seeing you for the first time?

We’ll be okay you said. That ‘we’. The ‘we’ that meant we were in this together, as partners, as equals, that ‘we’ that made up that hushed language, that ‘we’ that had been weighing down on me since you pulled over that car on that sunny afternoon in April and you told me that you had breast cancer.

Yes, that same ‘we’ that made me know we—you, and me, and Jill—we would all be okay.

Claire Stauffer is a senior at Boston College, where she is double majoring in Biology and English. This piece was originally published in The Medical Humanities Journal of Boston College, Volume 1, Issue 2, Fall 2015.

September 1990

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

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

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

Gretchen passed away on August 31, 2015.

Resources:

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

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

At the age of 17 at an all-male boarding school in Virginia, Jenks developed what would grow into a life-threatening eating disorder. It began with over-exercising, and quickly spiraled into bulimia, stimulant abuse, and drug and alcohol addiction.

Over the following ten years, the eating disorder ruled Jenks’s life and took uncountable things away from him. He hid his disorder for years, ashamed to tell friends and family that he was struggling with what was considered by many to be a “women’s disease.” It did not help that he did not know any males with eating issues to whom he could turn for advice.

Eventually, Jenks opened up to his family about his co-occurring issues with alcohol, drugs, and food. Hospitalizations and treatment programs helped him address his substance addiction first, but in the absence of those behaviors the eating disorder surged. He realized his pattern of trying to fill the void he felt inside with whatever was at hand: drugs, alcohol, relationships, exercise, or food.

Now 31 and in solid recovery, Jenks discusses the mixed feelings he had for years about letting go of his eating disorder: part of him wanted freedom, but another part was unwilling to give up the rituals. When Jenks began his journey towards recovery in earnest, at a treatment center called A New Journey in Santa Monica, California, it was not without stumbles.

From these experiences, Jenks realized his passion for service. He describes how his recovery is based in giving back to others who are themselves recovering from alcohol and drug addiction and eating disorders. One of Jenks’s primary missions is to encourage men to engage in open conversations about their struggles with food, which he believes is the essential first step to healing.

Originally from Rock Hill, South Carolina, Jenks currently resides in Venice, California where he works as a House Manager in a sober living house for men.

I’m a photographer and multidisciplinary artist whose work centers around the idea that sharing stories and making art about potentially isolating experiences can help make those experiences less lonely. I map experiences that many of us share, but don’t always talk about.

I’m currently working on an evolving art project about bereavement called Grief Landscapes, in which I’m documenting the wide variety of ways that people respond to loss. First, I’m inviting people to answer a series of questions about how they grieved after someone’s death. I'm then photographing, in extreme close-up, something that evokes the memory of the person who died, transforming it into an abstract landscape inspired by the person’s grief story.

Grief is often described as a journey, but it’s an intensely individual and often isolating one: rarely do people speak openly about the range of ways of grieving, and there seem to be many misconceptions about the grief process. I’m using the project to examine a number of questions about grief and bereavement: What does it look like? How do people navigate it differently? How does grief change us? Grief Landscapes documents grief not as a prescribed set of steps or timelines but as a place where there are no right answers, just an exploration of new territory.

You can live anywhere in the world to participate in Grief Landscapes, and I’m looking for contributors of all ages and backgrounds, with different relationships to the deceased, and different lengths of time since the loss. To view the project so far and submit your story, go to grieflandscapes.com.

Grief Landscapes is supported by a grant from the Ontario Arts Council.

Mindy Stricke is a multidisciplinary artist creating photographs, interactive installations, conversations and collaborations. Her work has been awarded grants from the Toronto Arts Council, the Ontario Arts Council and the Canada Council for the Arts, exhibited throughout North America, and has appeared in international publications including The New York Times, Time Magazine, Newsweek, and the Smithsonian Institute Photography Initiative’s book and online exhibit, Click! Photography Changes Everything. Originally from New York, she now lives in Toronto with her husband and two children.

Each fall at Boston College, the Women’s Center hosts Love Your Body Week (LYBW), “a week of programming dedicated to promoting healthy body image on campus.” The Women’s Center, in collaboration with other organizations, aims to give students space to reflect on their relationships with their bodies. Inclusivity is a key feature of this week, as many of the events of consider how body image intersects with race, gender, sexuality, ability, and class. This year events ranged from lectures on body image and the media and panel discussions on colorism, to a performance of Eve Ensler’s Good Body andEmbodied Expression, a therapeutic painting session.

The week kicked off on Monday, November 9 with the opening reception for Embodied Stories, a photography exhibit by Ben Flythe, a student photographer. Flythe photographed students and their bodily identifiers—tattoos, scars, burns, skin color, and birthmarks, for example. Accompanying the portraits were quotations from interviews with the students, who discussed what their bodies mean to them. Although the portraits highlight the specificities of each body, the students never become just bodies: their identities shine through; the photographs celebrate the dynamic and complex ways identities align with body image. In his gallery talk, Flythe emphasized the diversity of the stories he captured. These individual stories, he noted, speak to our own stories of embodiment. We each have an embodied story, and putting our own stories into dialogue with the stories of others—those portraits, for instance—is to understand that we are all connected.

This year I was fortunate enough to have a small hand in LYBW, as I helped to bring two student speakers to the opening reception. Leading up to the event, Marwa Eltahir—a Women’s Center staffer and co-coordinator of LYBW—and I sat down with Erin Sutton and Justin Kresevic and heard their stories; we were struck by how their stories spoke to the goals of LYBW and the complexity of body image. My work with Health Story Collaborative prepared me well for this task, and I adapted the Healing Story Session guidelines and questions for the purposes of the event. What’s more important, however, is that Health Story Collaborative taught me how to listen, to be present as someone shares their story, to accompany them. What mattered most was letting them tell their stories that needed to be told.

At the reception to Embodied Stories, Erin told her story of living with bulimia and her difficult, continuing journey to recovery. She spoke to the difficulty of coming to love her body at Boston College, where body image and appearance issues so often go unnoticed, unsaid. She expressed her gratitude to the people who have supported her, and spoke to the daily challenges she faces in coming to love her own body. Justin spoke to the difficulty of being short, when masculinity is associated with being tall and muscular. This dissonance has affected his personal relationships, and he works everyday to accept his own body. Justin emphasized the need to work against the problematic ideals of men’s body images: masculinity is as individual as each of our bodies.

Erin and Justin challenged all of us in attendance to understand truly what Love Your Body Week means. Loving one’s body isn’t something to be taken for granted, to be considered easy. When so many images and ideals of bodily perfection and worth hold up problematic and impossible standards, coming to love one’s body is a challenging and harrowing experience. By sharing their own stories of embodiment and acknowledging their continuing journey towards loving their bodies, Erin and Justin asked us all to consider our own stories.

I am so grateful to have been a small part of LYBW and to have heard these stories. Erin’s and Justin’s stories, along with the stories of students photographed by Ben, speak to how important it is to talk about these issues and how valuable it is to enter into meaningful conversation with others. These stories have stayed with me, in my own process of coming to terms with my own body. Sharing stories, at the end of the day, is about building community, starting conversations, and realizing that none of us are alone, that our stories all matter. I look forward to hearing more stories, perhaps telling my own, and continuing the worthwhile conversations around body image happening both at Boston College and beyond campus.

Erin ended her talk with a powerful statement about our selves, our bodies, and our stories: We are all worth it.

Change is inevitable, but it’s how we choose to deal with that change that determines who we are as people.

Health is something that we take for granted. Because we never fully understand its value until it’s gone, it often isn’t until we suffer some form of physical or mental breakdown that we realize just how valuable it is. But, sometimes, when we lose something so treasured, something much better is found. For me, when I lost my health, what I gained was a journey into discovering who I really am. I transformed into a person that I didn’t know existed, and this made me redefine myself.

In my youth, I was an avid snowboarder, skateboarder, weightlifter, paint-baller, and rock climber. But, of all the sports I loved, volleyball was my muse. I thought that I would play it forever. I racked up numerous medals in the high school, regional, and varsity circuits. I attended nationals in club volleyball, and snagged a silver and bronze medal in provincial beach volleyball tournaments. I loved it.

With plans of becoming a police officer, I found myself finishing university with dreams of my next steps. A partner, a big house, a fancy car, and then maybe some cute babies---all those picture perfect things we all aim for. I thought that life was in the palm of my hand. Little did I know, sometimes things don’t last forever.

It started with annoying muscle cramps, and then progressed to debilitating gastrointestinal, immunological, neurological, and psychiatric symptoms. I plead my case to over 15 specialists and had over 100 vials of blood drawn. No answers. After years of searching, I started to wonder if the doctors were right that nothing was wrong, that perhaps it was all in my head. But then, a neurologist from Hamilton’s Neuromuscular Clinic in Canada decided to take a closer look. My intuitions were validated as I was finally diagnosed with a rare disorder called Isaac’s syndrome, or immune-mediated neuromytonia.

Everything that I had previously envisioned about my life was gone. The volleyball. The fancy car. The policing career. All of it. Because of my health problems, I was pushed to the limit and forced to adapt to new limitations and reinvent the story of my life. Now, I’ve grown into someone who is completely different than the person I used to be. Before, I was a jock who was insecure no matter how low my percentage of body fat was or how dark my tan was. I was desperate for attention, I was impatient, and I was a know-it-all. Looking back, I knew nothing.

“Patience is bitter, but its fruit is sweet.” – Aristotle

Before my diagnosis, things came easily for me. Sports, school and relationships all came effortlessly in my life. Because of this, I naively thought that getting answers to my medical questions would be the same. I thought that they would come quickly. If not, obviously, the first doctor I consulted would set his entire life aside in order to figure them out; that didn’t happen.

It took me a long time to adapt to my situation. I learned that when your back is up against the wall, and there is nowhere to run, you learn to work with what you have, even if all you have is patience. Some goals and dreams will come quickly and others may require a tremendous amount of persistence. And, that’s ok. There is no race to the finish line. Life’s most triumphant moments may take a while to manifest.

Patience became the foundation of my journey. It was the lesson that came first, and gave me the strength and courage to accept the lessons that came next. It allowed me to endure a decade of emotional and physical struggles---rejection, failure, loneliness, and most importantly, symptomatic struggles. I learned that I could become someone that others could rely on. Instead of always receiving help from others, I was finally able to give back. I had the ability to give the greatest gift of all to people around me: my time and energy.

“It does not matter how slowly you go as long as you do not stop.” – Confucius

I believe that the learning curve in life is the same as the learning curve in sports. You start slowly, get a little bit of movement, but then fall down, and have to get back up again. At times, it was hard to keep going when everyone told me that I was fine. But, I remained patient and remembered that sometimes the biggest breakthrough will come when we’re on the verge of giving up. It’s not fair to quit based on what we think will happen. We have to keep searching for answers.

Looking back, I remember the devastation I felt after each negative blood test and each consultation that left questions unanswered. But, now I know that there was always forward movement. One doctor led to the next. One negative test set up another. Even if years went by without tangible improvements, I was still always moving forward. Every step, whether positive or negative, is the result of all your previous steps. Maybe it won’t come in a week, a month, or a year, but sooner or later, you will eventually find what you’re looking for.

“Be kind, for everyone you meet is fighting a harder battle.” – Plato

The more I moved away from the person that I used to be, the farther I ventured into the unknown. I realized that I was becoming more aware of those around me. The more I felt my own darkness and pain, the stronger my compassion for others became. I felt for people in similar situations and understood what it was to be chronically ill without answers. I realized that life wasn’t just about me. Everyone has problems. Everyone has battles you know nothing about. Feeling this new sense of compassion, I understood that even the doctors that dismissed me were doing the best that they could. Just like in volleyball, these people became part of my team.

"Healing is a matter of time, but it is sometimes also a matter of opportunity." – Hippocrates

Early in my illness, I was very attached to the reality I had constructed. I was like a child who clutched his toys and cried when they were taken away. When I lost my health, I lost my identity. Letting go is a part of life, and the sooner you’re able to, the sooner another part of your journey will begin. The day I realized that I would never be able to play volleyball again was the first time I fully understood the true scale of my loss. I had lost the love of my life.

The changes in my life were involuntary, and made me understand the power of surrender. Being forced into submission, but also still consumed with the need to push for answers, I was no longer under the influence of my egotistical desires. I became more peaceful with my thoughts---more loving and more understanding. Our struggles are really here to guide us somewhere else.

Each step of my journey was full of challenges, but I realize that I was unknowingly on an expedition of self-awareness and improvement. Although I lost many things along the way---a stable income, athletic talents and the freedom to do what I want---I gained something much more valuable: peace of mind. I became conscious of myself and I feel extremely blessed that I was able to go through something so transformative while having the ability to become someone I truly admire. Regardless of what you’re going through, I can confidently say that life has a way of getting us to where we need to be---both spiritually and physically. We just need to believe that it’s never the ending; it’s always the beginning.

This piece appeared on “The Good Men Project” website in September, 2015.

About Derek Carbone:

Hailing from Ontario, Canada, I was diagnosed with autoimmune Neuromytonia, or Isaac's Syndrome, after graduating from the University of Guelph. In my spare time, I enjoy reading, writing and researching various health topics. Follow along as I write for my blog: HealthVerdict.com.

You can reach Derek by email at derek_carbone@hotmail.com.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

My name is Nancy Marks. I have been a Boston-based printmaker and painter for more than twenty-five years. In addition to solo exhibitions, my work has been displayed in galleries, restaurants, and corporate settings. I am also a public health advocate and art teacher who is committed to helping others use art to engage in personal healing and community dialogue.

In 2014, I created The Intimacy of Memory, a body of mixed media paintings based on grief, love and remembrance. The work examined why people chose particular objects or keepsakes after someone close to them died. I was interested in the ways in which an object represents the person who died and the shared relationship with the survivor. How do objects celebrate a life? How do objects prompt memory and how does this memory change over time?

This body of work seeded itself fifteen years ago when the biological mother of my adopted daughter, Taylor, died of AIDS. Taylor was six at the time. As I cleaned out her mother’s apartment, I had to decide what to keep. Which items would hold memories of her mother and offer Taylor comfort both in the moment and throughout her life? As I selected a few dishes, her mother’s favorite shirt, a locket, a mirror, I knew it wasn’t just what I kept but also what I didn’t keep that would play a role in Taylor’s recollections.

As part of this exploration, I interviewed participants and meditated on what I had heard. When I began to paint, the layers of color seemed to mirror the layers of their recollections: feelings of loss, love and longing. While many details faded into the background, what I felt most acutely was the sense of connection that stretched from the present to the past. I began to see how relationships and roles become fixed in time and space at the moment of death. How we forever remain mother/father/grandfather, husband/partner, sister/daughter/granddaughter.

As I exhibited this work throughout Massachusetts, I started to feel that I wanted to more closely connect my art life with the power of personal narrative. Since this initial body of work, I have begun to host Intimacy of Memory workshops.

The Intimacy of Memory workshops are designed to allow participants to make art based on the objects they kept after a meaningful loss in their life. It approaches the complexities of grief and love using art as a central connector. Because so many don’t have language for loss, art can play a pivotal role in communicating emotion and promoting healing.

Whether the loss is fresh or long past, this workshop gives artistic space and voice to the grief and love you may have been nursing privately. While the subject is heavy for many, there is often laughter and joy as people share memories.

But the work doesn’t stop there. After a workshop, participants are encouraged to hang their art in public space. The goal of the public exhibition is to promote a community conversation about death, grief and love, three subjects that are often privatized in the broader culture. I know how deeply painful loss can be, but we make the healing process that much harder by not giving our losses adequate  "time.” After all, grief is really just remembering how much we love and miss those we have lost.

We all have a story to offer the world. Through our stories, I believe healing can be found. In high school, I started to really understanding this more. When I was a junior in high school, I began sharing bits and pieces of my story and my perception of the world around me in the form of hip-hop songs. I wrote about my identity as an African-American. I wrote about life growing up in the Bronx, NY. I even wrote about my future plans of one day becoming a doctor. This hobby continued as I transitioned to college and I truly began to realize the power behind music and the sharing of words in general. Words are definitely powerful.

Scholar Aaron Corn states, “Songs are indeed powerful. They have the power to soothe, the power to persuade, the power to provoke, the power to educate and the power to lament.” I experience this first-hand every time I tune into my music.

Last semester, as a junior at Brandeis University, I studied abroad in Durban, South Africa, with a program focused on community health and social policy. As part of the program, I had the opportunity to explore any topic of interest and complete an independent study project. For a long time I had no clue what I wanted to study. Throughout the semester I felt a strong calling, however, to pursue the connection between music and healing.

During the semester, I had the chance to live with host families both in urban and rural communities. While living in one of the rural communities, called Sandanezwe, my host-brother, Mduduzi, introduced me and the other students in my program to a project that he created in the community. Mdu was in his early thirties and he walked with a limp. Through conversations with him, I learned that he suffered from Polio as a child. The project he created, the Disability Special Project, seeks to create a safe space for the disabled community within Sandanezwe. It is a project established and solely maintained by the disabled community. I saw how Mdu’s experiences growing up in this community shaped his vision for this project. In South African society, and many other parts of the world, many people who are considered disabled face exclusion from society and other forms of discrimination. Although I had no prior experiences working with disabled people, meeting Mdu and hearing his story inspired me to learn more.

After much thought, I decided to go back and live in the Sandanezwe community for three weeks to conduct my independent study project. I titled my project “A Mirror to Society: An autoethnography reflecting perspectives of disability through personal narrative in a rural community in South Africa,” and through this project I sought to hear the stories of members of the Disability Special Project, with a focus on their self-perceptions. I also interviewed members of the greater Sandanezwe community to learn how they viewed people with disabilities.

In the middle of my project, I remember waking up one morning very frustrated. Throughout the process, there were many times when I had to throw my plan away. For example, there were many days when the weather was too cold or rainy, and no garden members would show up to work, which meant I wouldn’t be able to speak to anyone. This morning, instead of sitting around in misery, I decided to go for a walk and climb to the top of a mountain. I found a nice spot overlooking the beautiful scenery of Sandanezwe. I looked out to my left and saw an endless array of green mountains weaving off into the distance. I interrupted my gaze to select a song to play on my iPhone. Unlocks. Scrolls. Music. Genres. Scrolls. Instrumental. Scrolls. J. Cole. Scrolls. Love Yourz (instrumental). Click. My ears were then greeted with the soothing sound of piano chords. The instrumental was from a song by J. Cole entitled “Love Yourz”. While listening, I looked up at the mountain range, and the words “you can, you can, you can” rang through my mind. I started to think of the interviews I had done so far, and the responses that I had received, especially those of the garden members. “I can do things, but they won’t let me do it!” echoed the voice of one member in the garden. “I’m strong! I am a human being,” rang another garden member’s voice. I pulled out my phone and started to note my thoughts. My thumbs moved swiftly. “Don’t let nobody ever tell you, you can’t do,” I wrote, “Can’t walk, can’t shoot, can’t love, can’t live…” I was writing to those voices of oppression. I was writing to the oppressor. I was writing to myself.

One of the last questions I asked the garden members in my interviews was, “If you were to write a song to the community to help them to understand you better, what would you say?”As they answered I took note of the responses. “I can write that God is the beginning and the end, so all our challenges if you can take our problems and put them in God I think all our challenges will disappear,” one member replied in his soft-spoken voice. “I can tell people that I’m proud of myself in a way that whatever I contribute in the project it can also benefit the community,” another determined member responded. “I will write a song and say that if they see me as a disabled person they mustn’t think that I’m useless because they are so many things that I can do for them. They must respect me and have hope in me because I can do of the things that can help them,” said another. A group of three said, “We can introduce the song to teach the community that a disabled person can do anything that a person with no disability can do.”

It wasn’t my plan to write a song for my project but sometimes the best plan is to just live in the moment. I realized that this was what I wanted in my project all along. I wanted the greater community to hear the voices of these members of the garden. I wanted the garden members to know that their perspective matters. After another day and a half of reflecting on these responses, listening to the instrumental on repeat, and writing, the song was complete! The song is especially powerful because it was created using the words of the garden members. On my final day in the garden, a celebration took place. The Department of Agriculture and Environmental Affairs from a neighboring town came to meet the garden members and planted onion seeds with them, and I performed the song I created for them. Everyone crowded around me with big smiles as I began, and at the end of my rendition, the garden members all clapped and cheered. New life was deposited into the space. Seeds were planted both literally and figuratively in the garden that day.

You can watch the Mirror To Society video here.

Some of the most impactful people encountered in our recovery journeys are our treatment providers. They provide invaluable education, compassion, faith in our capacity to heal, accountability, and the best of them help us relearn how to trust.

I met Kim Wyman, the dietician at Monte Nido Vista, my first night of residential treatment. It was a Monday, the day every week when those furthest along in recovery prepare dinner for the whole house. To bless the beautiful meal they prepared and to cultivate a positive mindset before eating what for some of us was quite a challenge, Kim sang “Amazing Grace.” Her heavenly voice, glowing presence, and palpable joy for sharing this food in community brought me to tears.

Though we only worked together for ten weeks, Kim’s wisdom resounds in my head to this day, guiding me to stick to recovery’s course and reminding me of the healthy ways to meet my needs. In this podcast, she shares some of her perspectives on the process of healing from an eating disorder.

How we feed ourselves is an expression of how we feel about ourselves. Sometimes the most effective way to change how we feel about ourselves is to change how we feed ourselves. Kim considers Recovery to be a process of Recovering Self. She elucidates the different parts of Self that need to be actively, compassionately cared for, and explains how one must separate physical needs from emotional needs (to be seen, heard, witnessed, and acknowledged) in order to meet them all appropriately.

Activating sensory experience is one of Kim’s hallmark methods for recovery. She encourages people to get out of their heads and into their bodies by seeking pleasure, enjoying nature, and cultivating a loving relationship with food through the creative act of cooking, truly tasting food, and eating with others.

Kim explains the 3 tenets of recovery – never weigh yourself, journal, and reach out to others – and also offers advice about how to find the best dietician for you.

In addition to being a Registered Dietician, Kim holds a Master’s in Public Health. She has been working primarily with men and women who struggle with eating disorders since 1997.

This originally appeared in Modern Loss. Republished here with permission.

I gave my inaugural eulogy at fourteen. When my best friend Liz passed away from osteosarcoma after one year of unsuccessful treatment, her mother asked if I would share something at the service. I seized the opportunity, as it seemed like a potential antidote to the grief roiling inside me.

For days, I immersed myself in boxes of photographs and stacks of letters that told the story of our friendship. I spent hours feverishly recording my memories, depicting her mischievous smile, glittering eyes, and elegant voice. On the morning of her service, I rose to the pulpit with quivering hands but a strong heart, and delivered a eulogy that was humorous, commemorative, and authentic.

Little did I know at the time what an extraordinary journey this act had launched—into myself, into writing, and into healing.

To read more, click here.

Eating disorders are grossly under-recognized as a condition that affects not only women and girls but also men and boys. Because of this, when Thomas developed anorexia at age fourteen he was faced with the added challenges of combating stigma, finding treatment, and connecting with male peers undergoing similar experiences.

After a hospital stint that restored his physical health, Thomas was declared “cured,” but his emotional problems remained unaddressed. He relapsed several years later, and this time struggled primarily with orthorexia. Undeterred by the obstacles facing men with eating disorders, Thomas took his well-being into his own hands. He made it his mission to cultivate the community and comprehensive understanding of holistic wellness that enable someone to truly begin the journey of recovery.

Thomas recalls how small his world became when he was in his eating disorder, and how obsessed he became with controlling not just food but everything in his life. He shares the techniques and tools he adopted -- like writing -- that helped him detach from ED thoughts and behaviors.

As an eating disorder recovery activist, Thomas decries the insidious gender and age discrimination in eating disorder treatment and awareness models across cultures. Societally imposed appearance standards plague men too, and it is not unusual for them to remain undiagnosed despite showing hallmark symptoms of eating disorders. Thomas’s story calls upon us all to recognize that men get eating disorders too, and to help expand treatment options and shift the recovery culture to be more inclusive.

Originally from Sydney, Australia, Thomas is a student in Tübingen, Germany, pursuing two degrees: one in Communications majoring in Media Production and the other in International Studies majoring in German. Learn more about Thomas’s work as a wellness coach, health activist, creative producer, and author of You Are Not Your Eating Disorder on his website: http://www.thomasgrainger.info/.

Want a glimpse of what opioid addiction really looks like?

Meet Vinnie: a self-described “regular” guy from Revere, Mass., and a recovering drug addict.

Toothless, and 60, Vinnie was prescribed opioids — Oxycodone, Oxycontin, Dilaudid, among others — for a chronic pain condition. Though he says he never intended to abuse these medications, Vinnie became an addict, taking painkillers for 28 years as his doctors kept prescribing higher and higher doses to manage his pain. Listen to his story here:

Vinnie stopped caring about anything except opioids, and finding his next dose of medication.

His marriage fell apart. He missed opportunities to spend time with his only daughter as she grew up. He became estranged from friends. He stopped taking care of his body and lost his teeth, gained 100 pounds, and developed diabetes, heart disease and arthritis. He fundamentally lost his will to live and contemplated suicide.

Ultimately, it was a pharmacist who put a stop to Vinnie’s opioid use by refusing to fill his prescription. After his initial panic, this abrupt end to the drugs led Vinnie to connect to a new doctor, an addiction specialist. His new regimen included a slow tapering of the narcotics and the initiation of Suboxone therapy.

The state and nation are in the midst of an escalating opioid crisis — it’s estimated that 67 Americans died each day from opioid overdoses in 2013, and the number of deaths from drug overdoses was three times that of the combined deaths from car accidents and homicides in that same year.

Just this week Massachusetts Gov. Charlie Baker enlisted medical schools to provide more addiction-related training to medical students. Against this backdrop, Vinnie’s story shows the harsh reality of addiction as well as a path to recovery.

How to fix it? It’s clear that a multifaceted approach is needed, as outlined in an extensive report put out by Gov. Baker’s Opioid Working Group in June.

One element, relevant to Vinnie, is consideration of one of several medications available to treat opioid addiction, including methadone, buprenorphine and naltrexone. Currently, these medications are underused, partly because they are controversial.

Access can be tough, as the majority of treatment centers don’t provide such medications, and many insurers don’t cover them or have strict rules on how and for how long they can be prescribed.

Suboxone, the drug Vinnie takes, is a combination of buprenorphine and naltrexone, a partial opioid agonist to reduce drug cravings and an opioid antagonist added in small amounts in an effort to prevent abuse. This medicine is much easier to get than methadone (patients can take it home instead of having to go to a clinic every day), and it can be used both for medically supervised opioid withdrawal and for long-term maintenance therapy.

So, what’s the controversy? Some argue that use of Suboxone (and methadone) is just replacing one addiction for another. It is still an opiate-like compound, and one that is habit-forming.

In addition, Suboxone has street value. It has become increasingly popular among addicts as a means of curbing opiate withdrawal symptoms, bridging the gap until opioids can be obtained, and perhaps, because there is a market for it, providing an income source to allow for the purchase of more illicit drugs.

Does this mean we shouldn’t use the medication? Data clearly show that medications like Suboxone and methadone are saving lives, decreasing the spread of infectious diseases, decreasing criminal behavior and improving social functioning among addicts. And Vinnie’s story certainly argues in favor of Suboxone. As he says: It gave him back his life.

Originally published on WBUR CommonHealth Blog on September 4th, 2015.

Resources:

http://www.mayoclinic.org/diseases-conditions/prescription-drug-abuse/basics/definition/con-20032471

http://www.mayoclinic.org/diseases-conditions/drug-addiction/basics/definition/con-20020970

http://www.recovery.org/topics/find-reputable-opioid-and-opiate-recovery-hotline/

http://www.addiction-treatment.com/find/opiate/hazelton-nd/

http://www.mass.gov/eohhs/images/dph/stop-addiction/recommendations-of-the-governors-opioid-working-group.pdf

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

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

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

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

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

Emily’s eating disorder developed when she was just 14, shortly after she left home to attend boarding school, when her parents were getting divorced. She talks about the difficulty she had – and sometimes still has – in speaking and claiming the word “bulimia”. She reflects on how her eating disorder was not born from body hatred, but rather a plethora of painful emotions seething inside her.

For years, Emily’s eating disorder was her hidden identity, active to varying degrees but always present. She was convinced it would always be a part of her life. But finally, when she was 28, her family confronted her and revealed that they knew about it. Emily allowed them to serve as her initial motivation to begin recovery. 

When she first entered treatment, Emily struggled to even find the words to articulate her feelings, thoughts, and behaviors. But as she began to crumble in the safety of treatment, she also began to blossom.

Now 32, Emily resides in San Diego, California where she devotes herself to mothering her 20-month-old daughter, Winnie. She shares her aspirations for Winnie, and the values born from her experiences in recovery that steer her parenting decisions. And she speaks about how being a mom has bolstered her along the path of recovery, and celebrates how far she has come.

On July 7, 2014, Kelly arrived at Monte Nido Vista. On July 7, 2015, she celebrated her first year in recovery. When we spoke just before her anniversary, she marveled at everything being in recovery has afforded her.

Originally from New Jersey, Kelly stayed in California after finishing residential treatment in order to complete her college degree at Pepperdine University, where she is now a senior.

Kelly developed anorexia when she was just thirteen years old. She spent the following nine years cycling in and out of eating disorder treatment, trying to manage her primary behaviors of restriction and over-exercising. Told by her doctors that she would never fully recover, Kelly became intensely focused on maintaining her identity as a person with an eating disorder, which provided her with a meaning and a purpose. She excelled at her eating disorder. Furthermore, the treatment centers felt like safe havens, retreats from the challenges and uncertainties in life. But eventually Kelly’s behaviors took too great a toll: her body, her mind, her spirit, and her family needed to be freed from the depleting cycle.

In her story, Kelly speaks about the impossible desire to have just a “little bit” of an eating disorder, shares the challenges she has encountered in trying to strike a balance between recovery work and social life, and identifies what keeps her committed to recovery when the road gets bumpy. She acknowledges that recovery is a long process, but she harbors the essential faith that becoming fully recovered one day is absolutely possible."

In the weeks leading up to the 25th anniversary of the Americans with Disabilities Act (ADA) on July 26, social media was abuzz with disability stories. The National Museum of American History even organized an international Twitter conversation on #DisabilityStories on July 15, 2015. For the remarkably successful daylong event, people from across the globe engaged in conversations about representations of disability in art and popular culture, the lived experience of disability, and historical accounts and artifacts.

For people with disabilities and disability rights advocates, this anniversary occasions both celebration and reflection. Accessible spaces, biomedical technology, and assistive services have made the world a more habitable place for people with disabilities. At Boston College, where I attend school, student have rallied around the cause of disability, fighting for a campus as accessible as it is beautiful. The Disability Awareness Committee of Boston College has made accessibility a critical issue on campus, documenting the ways in which the built environment and institutional policies at Boston College—for instance, steep pathways marked as wheelchair accessible—disempower them.

Disability advocates in Boston marked the anniversary with a celebration in Boston Common.

The ADA has been a remarkable success, but we must not forget the work left to do. William Peace, who attended the event, perhaps sums it up best: “[The ADA] has succeeded legally, but socially it has a long way to go.”

Securing the civil rights of and equal opportunities for these citizens is, bottom line, an issue of representation. People with disabilities are daily disempowered and isolated by institutions and individuals that pass over, erase, or ignore the realities of disability. It happens when a conference is held in an inaccessible building. It happens when a path is marked as accessible but is, in fact, unnavigable. It happens when a vision resources workstation provides no resources, when the sign for the workstation isn’t even in braille.

People with disabilities are often invisible in some parts of everyday life, such as in the workplace. In 2012, only 33.5% of working-age people with disabilities were employed. In the media and popular culture, individuals with disabilities appear less often than able-bodied individuals. When they do appear, their portrayals are often limited.

The unflagging stigma and underrepresentation of disability halts the progress of the ADA. If people with disabilities continue to be forgotten or perceived in problematic ways, then the ADA will fail to achieve its ultimate goals of accessibility and inclusion.

Stories are the answer to this crisis of representation. Which stories get told and how those stories are circulated determine how disability is understood socially and culturally.

We need to move away from disability as burden and the “super-crip” stereotype. While these two overarching narratives seem compassionate or inspiring, they both portray disability as a tragedy, and life with a disability as inferior and unsatisfying.

Disability cannot be reduced to a single narrative of pity, overcoming, or empowerment. Disability, as with all lived experience, is complex, multi-faceted, rich, individual. It resists a single story.

As a society, we should listen more to the stories of individuals with disabilities. To the stories of their everyday life, of their successes and their struggles, the minutiae and the monumental moments. Disability is an innumerable range of stories—told, retold, to be told.

Telling stories of disability is vital to making visible and giving voice to individuals with disabilities. Hearing stories is a way of acknowledging the reality of disability and empowering people with disabilities. By acknowledging similarities, differences, and singularities, we connect ourselves with stories.

So let’s keep sharing #DisabilityStories beyond the 25th anniversary of the ADA. The success of the ADA is about more than ramps, web accessibility, or public services. It’s about making everyday life accessible, inclusive, and fulfilling to people with disabilities. It’s about changing our attitudes and assumptions toward disability once and for all.

When she was a teenager, Kristie began competitive weightlifting. The sport proved to cultivate a culture of restricting and binging, and she soon developed an eating disorder. Over the years, she cycled through various behaviors, including compulsively exercising, restricting, binging, and purging.

Kristie – like so many of us – was told her disorder was chronic, that “recovery” meant maintaining her eating disorder, not overcoming it. But she wasn’t willing to settle for this prognosis. So she sought out treatment options in the Northern Hemisphere, found Monte Nido, and embarked upon her path towards recovered.

Kristie speaks candidly about the challenges of recovery: there is no clear way it is supposed to look; sometimes it is necessary to follow a meal plan, but the goal is to move towards intuitive eating; she had to acquire basic life skills that the eating disorder prevented her from learning previously; her eating disordered mentality also manifested in finances and relationships; and the differences in motivation to start recovery versus to continue in recovery.

Now two years into committed recovery, Kristie serves as a mentor for those earlier on in the journey through a global eating disorder recovery peer support program called MentorConnect. She describes the unique recovery team that she had to create herself, as professional eating disorder recovery resources are greatly lacking in the Southern Hemisphere.

Kristie expresses her perspectives that hope is the “first and crucial” element in recovery, and how important it is to revolt against cultural messages that encourage body-hatred. Her story and her dedication call us all to join her in manifesting a body-positive, hope-filled society.

Born in England to New Zealand parents, Kristie grew up in Australia, but has been living in New Zealand for five years now where she currently works for Outward Bound.