Listen to Sean share his story.

At age 22, while a graduate student at Boston College, Sean Manning had a hemorrhagic stroke.Seemingly out of nowhere, a blood vessel in his brain “exploded” while he was lifting weights.In a second, he went from a physically fit guy doing squats at the gym to someone with lasting physical deficits. Only later did he learn that he had been living with an arteriovenous malformation (AVM)--an abnormal tangle of arteries and veins—in his brain, likely since birth.Without knowing it, he had always had an increased risk of vessel rupture and cerebral hemorrhage.

Initially, he was in a coma. When he woke up two days later, he was in the hospital and couldn’t speak or move the left side of his body. He wanted to get up and run, but wasn’t able, and he felt trapped. Still, to this day, he gets a panicky feeling when he is in hospitals, overwhelmed by a sense of confinement and a desire to escape.

While the days in the hospital are somewhat of a blur, he remembers struggling to come to terms with what had happened:

“Can I possibly live a life after this?” he remembers thinking. “Am I am going to be in a home for the rest of my life? Am I going to be in a wheelchair? I play pick-up basketball three times a week. I just dunked last week. And now you are telling me I can’t walk?”

He had never before experienced such an out of control feeling and he was terrified. He describes a long process of recovery, which is ongoing. He worked his way through denial, anger, and self-pity and has come around to accepting his new reality. His three-year anniversary was in March, 2019. He still struggles with some left sided weakness and with periodic seizures, but these challenges aren’t holding him back. He has successfully completed the Master’s degree program in accounting he started before the stroke, but notes that his priorities and passions have shifted. He no longer wants to be an accountant. Today, he works in ambulatory practice management at the Dana-Farber Cancer Institute and intends to pursue a career in nonprofit consulting.

His stroke caused enormous suffering in his life—something he had never experienced before—but he is finding a way forward, and acknowledges that he is now a different, and in some ways better, person than he was pre-stroke. He is more open to different experiences and perspectives; his relationships have strengthened and deepened; he is more empathic.

*Mixing and sound design by David Goodman

Music:

1. Guitar, “Le Conqerant”

2. Roxy Music, “If There Is Something,” 1972

3. Trypheme, “White Douleur"  Thanks God for Air Emotions (freemusicarchive.org)

4. Junkadelic Brass Orchestra, “Baron Samedi,” Travelling in the Footsteps (2017)

5. Lee Rosevere, “Trying to be Strong,” Living with Trauma, 2018 (freemusicarchive.org)

6. Dee Yan-Key, “Dreamworld” One Hour of Your Life (freemusicarchive.org)

On March 19, 1991, Larry Brennan broke his neck.

He was 18 years old and suddenly paralyzed. He’s had to use a wheelchair ever since.

At the time of the accident, Larry was a freshman at the University of Massachusetts Amherst; he was in the Bahamas with friends on spring break. The details of the accident are fuzzy, he says, because he was intoxicated at the time, having been on a “booze cruise” all day. He remembers running down the beach, then nothing else. According to his friends, Larry dove into the water. The impact broke his cervical spine.

Initially, when his friends saw him lying face down in the water, they assumed he was snorkeling, and it was several minutes before they realized he was in trouble. He wasn’t breathing when they pulled him out. One of his friends knew CPR, and working with the others, tried to resuscitate him until the ambulance came. Larry coughed up sea water and started to breathe again, but his heart stopped and restarted numerous times before help arrived.

Larry was raised in Wakefield, Massachusetts. In high school, he was a popular, 6-foot-4-inch athlete. He played football and tennis, became an accomplished skier and had many friends. As a freshman at UMass, he was flourishing, and his spring break trip was a highlight.

The accident damaged his spinal cord at the C 5-6 level, basically his lower neck, leaving him a quadriplegic (meaning he has weakness in all four limbs). He can move his shoulders and his upper arms, but not his fingers, and he’s completely paralyzed from the upper chest down, with total weakness in his core trunk muscles and legs. However, Larry’s injury is considered “incomplete” in that his sensory nerve fibers were spared and his sensation is intact. For this, he feels lucky.

Here, Larry talks about coming to terms with his injury and learning to live a productive, happy life — though one he says he wouldn’t wish upon anyone else. He finished college at UMass Boston six years after his injury. Now, he lives alone with his service dog Emmie, and gets help from a home aide. He works full time as a Senior Development Officer at Massachusetts General Hospital; goes on dates, skis and sails, and still hangs out with his high school buddies. As Larry puts it, “the biggest thing for me is that I live a full and active life — similar to how my life would have been had I not been injured. Now, I can’t walk, but this is not so important to me anymore. I care most about my relationships with friends and family, staying active and having fun.”

In meeting Larry, I realized how little I understood about quadriplegia before our interaction. I never really stopped to consider the day-to-day challenges that someone in this situation faces, and the tremendous strength that it takes to overcome these obstacles. Moreover, meeting Larry has made me think about how our fears of the unknown can hinder true and genuine connection in life. When I first met Larry, I was nervous, checking myself, wondering how to be. Should I try to shake his hand or will this make him uncomfortable? Should I offer him food and drink during our meeting or will that be too hard? And so on. Larry has taught me that it is better to just ask, to be direct, and not to let these mundane, functional issues get in the way. Larry has no hang ups about these things, so why should I? We just do some things differently, and that’s all.

Originally published on WBUR Commonhealth Blog, March 9, 2012

Resources:

http://www.mayoclinic.com/health/spinal-cord-injury/DS00460/DSECTION=symptoms

http://www.nytimes.com/health/guides/disease/spinal-cord-trauma/overview.html

http://www.spinalcord.org/resource-center/

Photo Credit: Mark Hunt

Zachary went through puberty twice, first as a girl, then as a boy, after he started taking hormones. “The second time was a lot better,” he said. “I got excited when my voice cracked, and when I started to smell different,” though he adds that excitedly telling friends that you smell really bad is kind of a conversation killer..

Zachary is transgender. He was born female but he has always known, even before he could articulate it, that he is male. His journey has been challenging, and he suffered from depression for many years as a result. But he is now a confident, happy, inspiring young man

Last month, Zachary, 19, graduated from Methuen high school. He’ll start Wheelock College in the fall, where he has received the four-year, $20,000 annual Passion for Action scholarship for his demonstrated commitment to community service, leadership and scholarship. He plans to become a social worker with the goal of working with LBGT (lesbian, gay, bisexual, and transgender) kids.

Medically, a transgender person can choose to pursue hormonal treatment and/or surgery in order to bring the biological sex closer to the gender identity, though no intervention is a necessity. For female to male trans people, like Zachary, the surgical options include removal of the reproductive organs, “top surgery” (mastectomy), or “bottom surgery” (construction of male genitalia). For now, Zachary has chosen to pursue hormones, removal of his uterus and ovaries and top surgery, but doesn’t feel that he needs to have bottom surgery. He stresses that this is a personal decision, and that no two transgender people are the same.

Sexual orientation among transgender people is equally varied. Zachary identifies as bisexual. He has dated females in the past and currently has a boyfriend who is a female to male trans like himself. Their shared experiences have brought them very close.

I have learned a tremendous amount from Zachary. I now better understand that people are born with a biological sex and a gender identity, and that these don’t always match up. Trying to ignore ones gender identity, or to force it to align with ones biological sex when this doesn’t feel right, is painful and psychologically detrimental. To feel whole, gender identity must be embraced, but when there is incongruity between biological sex and gender identity, as is the case for transgender individuals, society doesn’t make this easy.

Most importantly, Zachary has taught me that we all need to educate ourselves and develop tolerance toward transgender individuals. He is a person with tremendous courage and integrity, but he has been forced to deal with a more difficult set of decisions than most of us, and with societal discrimination.

This week, the Joint Committee on the Judiciary in Massachusetts held a hearing to determine the future of the Equal Access Bill.

This bill would add “gender identity” to the Massachusetts civil rights law for public accommodations. As it stands, this law prohibits discrimination on the basis of “age, race, creed, color, national origin, sexual orientation, sex and marital status” in public accommodations, but does not protect transgender individuals. Put simply, this means that Zachary could be denied service or treated unfairly in a restaurant, an airport, a retail store, a public bathroom, on public transportation and so on. According to a national transgender discrimination survey published this year, up to 50% of transgender individuals in Massachusetts have experienced verbal harassment or mistreatment in public accommodations.

Originally published on WBUR Commonhealth Blog July 12, 2013

Resources:

For general information:

http://www.glaad.org/transgender

http://community.pflag.org/staff/transgender

For parents and families:

http://www.imatyfa.org/resources/parents/

Photo credit: Marilyn Humphries, Greater Boston PFLAG

In April 2014, Sue Levy shared her story of living with Lymphangioleiomyomatosis (LAM), a rare, progressive and potentially fatal lung disease. Now, she shares her story of navigating infertility, a journey that started years before, but ultimately was informed by, her LAM diagnosis.

Sue, now 37 and married with two young daughters ages 18 months and four years, underwent six unsuccessful cycles of IVF before she and her husband decided to explore alternative ways to have children. They initially pursued domestic adoption but ultimately decided on egg donor and gestational carrier.

A couple is deemed “infertile” when they are unable to conceive after one full year of unprotected sex. In the U.S., approximately 11% of women 15-44 years of age have a difficult time getting pregnant or carrying a pregnancy to term, according to the CDC. While the use of Assisted Reproductive Technology is much more common today than it once was, the term “infertile” is still fraught with negative connotations, especially for women. Dealing with infertility can bring up feelings of shame, failure and loss.

Today, Sue can honestly say that her inability to get pregnant was a blessing, in part because her lung condition is estrogen responsive and can worsen in pregnancy, but mostly because she cannot imagine having any other children than the ones she has now. Her story reminds us that although our plans don’t always unfold as we had hoped, we can find unexpected joy and beauty along the way if we open ourselves up to the possibilities.

Resources:

http://www.health.harvard.edu/topic/infertility-resource-center

“Do I look man enough?”

As someone whose body falls outside the societal ideal, I have struggled to establish a positive body image. Skinny, lithe, and lean, my body might fit the mold of a long-distance runner, but one would hardly consider it stereotypically masculine. One might even say it’s feminine. And if there’s one thing men are taught to reject, it is femininity.

I have spent years painstakingly overanalyzing nutrition and exercise and appearance, trying to decipher whether my body was a body I wanted, a body I felt proud of. I’ve tried to balance my daily miles with my daily calorie intake, a strong lower body with a comparatively weaker upper body. My exercise accomplishments —hikes, long runs, marathons, personal records—can sometimes feel less valuable when I consider my frame.

While trying to make sense of my body, I’ve grappled with the rigid definitions of masculinity and femininity: what constitutes a “good” body versus a “bad” body? The construction of these illusive categories show deep-rooted problems in the way society understands health, gender, and individual expression.

In the United States, the ideal male body is muscular, athletic, formidable, and toned. I don’t have bulging or sculpted muscles. I’m not tall or broad-shouldered. And for so long I focused on how my body failed to meet standards instead of defining my own terms for body satisfaction.

My time at college is marked by small steps forward in my journey towards establishing healthy body image. It has involved coming to terms with the ways in which my body does not meet the dominant standards of masculinity. This progress is largely due to students and faculty initiating conversations and posing important questions about body image and campus culture at Boston College and other campuses across the country.

While exploring my body image, I have grappled with questions like:

“Do I look man enough?”

“Do I look masculine?”

“Do I have a good body?”

“What is a good body anyway?”

What I’ve come to value—and what has helped so much—is having space to explore these questions with others, whether in class, at a lecture, or in a friend’s living room. So many people are exploring these questions!

June was Men’s Health Month, and advocates across the country created space for discussing issues like preventive health and mental health. After long being solely cast as women’s health issues, body image and body satisfaction have become increasingly vital topics

in men’s health as well. For instance, during Love Your Body Week at Boston College, there is always an event that addresses issues of masculinity and body image.

This chiseled ideal of masculinity narrows the range of male bodies deemed acceptable, attractive, or desirable and casts an impossible mold for men and boys. If you deviate too far from that standard, you might just feel out of place. For example, restricting the ideal body to an impossible healthy and muscular standard has produced an unhealthy culture of workout supplements and bodybuilding. The body is often a source of concern and dissatisfaction, and this kind of scrutiny can have debilitating consequences for mental and physical health, as in Body Dysmorphic Disorder and Muscle Dysmorphic Disorder.

Stories about body image are necessary because they reveal the cracks in the impossible model of embodied masculinity. Even starting these conversations can be difficult because stereotypical masculinity dictates that we show unwavering confidence in the face of adversity, that we hide vulnerability. Instead of engaging honestly and critically, we keep quiet.

Against the odds, while in college, I began to embrace my own body and celebrate the remarkable and beautiful diversity of all bodies. At college, we’re encouraged to examine the way our bodies affect our relationships with friends, classmates, partners, mentors, and professional connections. What’s less talked about is how this obsession with idealized bodies affects our relationships with ourselves.

Taking part in the campus conversations about body image and learning to celebrate difference provided the momentum I needed to move forward.

I had many difficult days and experiences, like runs not intended to celebrate my body but to punish it, restrictive eating habits, and experimenting with protein supplements. But I’ve come to focus less on how my body looks, and more on what it can do. I might have a slight frame, but my accomplishments are sizeable. I’ve raced two marathons and run countless miles. I’ve hiked difficult trails, culminating in the most spectacular views. I’ve become an adventurous eater, and I’ve embraced food as nourishment and cooking as an opportunity for building connections with friends and family.

Taking a holistic approach to body image—realizing that I am more than my body as much as I am my body—has helped me recognize the value and worth of my own frame. Instead of focusing on the stereotypically masculine features I don’t have, I focus on what I do have: an agile body that supports my everyday activities, an efficient and powerful stride that powers my long distance running.

I’m only one man, but this body is man enough for me.

Christopher Kabacinski is a recent graduate of Boston College, where he studied English and medical humanities, co-founded the Medical Humanities Journal of Boston College, and led the public speaking and storytelling group Word of Mouth. Originally from Scranton, Pennsylvania, Chris now lives in Boston and works in global public health.

Your scabs are elegant because they are outward signs of you mending and regenerating, creating soft new skin without even thinking about it. While you’re busy being angry about your inability to finish a task for work or dreading calling  someone back, while you’re regretting the choice you made last month, without even knowing it, you’re subconsciously reconstructing yourself, and your ‘big’ worries are trivialities compared to your body’s own constant maintenance of what is vital, what keeps you alive.

I’m not going to tell you to find someone to hold your hand even when it’s callused or scabbed. You’ve already been told that, and that doesn’t mean it always goes well, or will provide what you need. Instead, I’m going to tell you to learn to respect your own scabs, to find elegance and utility in the way your calluses grip your coffee mug. To not think twice before wearing shorts when there are chain grease stripes, scabs and bruises on your legs.

It’s far too easy to fear someone else’s split-second judgment about your scars or calluses or the shape of your muscles. But, while someone else may shake your hand for five seconds, you wear and carry it always. You are the one who watches your

fingers nimbly hop the keys of your keyboard as you type, lift the spoon in your breakfast each morning, and gently comb out your hair each night. As you work to modify yourself with your mind, recall that your body is doing the same, and respect it. Respect your scabs.

Annie Harvieux is a senior at Harvard College, where she is an English major.

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.

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.