By Rebecca Fogg

It all started so early that I didn’t question it–my body yelling that something was terribly wrong with me or my life, even when it wasn’t. A chest cramp and wave of chills as a child, when I fibbed to a babysitter about my bedtime and got away with it. Spontaneous sobbing fits so immersive as a teenager that, driving myself to school, I had to pull off the road because I couldn’t see. Vigilance in romantic relationships as a young adult, analyzing every moment of tension for a partner’s potential indifference or disrespect (which would feel dangerous) as if scanning for cancer. Gut-knotting anxiety in business on the few occasions I met a no-win political situation but felt as though my whole future depended on mastering it.

I never spoke to my parents about my youthful somatic suffering, or to close friends later on. Why would you mention that you breathed air, or put one foot in front of the other to walk? If it was in my nature, then nobody could do anything about it. If it wasn’t, then it was my problem to solve. I could still experience the thrills of love, joy, learning, helping, and achieving, and frequently did. But they often felt snatched, like luxury items I’d smuggled past a dozing guard who’d awake at any moment and chase after me. Finally, in my early thirties, some especially observant friends nudged me toward therapy, and I learned to recognize and challenge distorted thoughts that caused me pain. Life improved significantly.

Then in 2006, my right (dominant) hand was partially amputated in a midnight explosion in my Brooklyn apartment, where I lived alone. Eight tendons, an artery, and the main nerve of the hand were severed, requiring extensive surgical repair at Bellevue Hospital in Manhattan. Afterward, doctors couldn’t tell me how useful my repaired hand would be, because so much could still go wrong in the healing process. Exhausted, disabled, in pain, and mentally muddled by pain medication, I couldn’t manage self-care, house care, and a mountain of accident-related paperwork myself; so my family stepped in for a few weeks, then an army of friends took over until the worst was behind me.

I was deeply grateful for, and cheered by, the love and assistance I received. But I also felt profoundly lonely, alienated from my self and life, and grief-stricken by unnamable loss. My trauma expressed itself in spontaneous sobbing fits, violent dreams, and intrusive thoughts about the September 11th terrorist attacks (which I’d also survived, as I worked just across the street from Ground Zero). Ultimately, physical recovery required three months out of work, several hundred hours of occupational therapy, and 45 hospital visits that year. I muscled through it by continuing with psychotherapy, speaking regularly to loved ones, and studying the science of trauma and healing, which intrigued and inspired me and gave me a sense of purpose and progress. By the one-year anniversary of the accident, I had returned to the exact same life I’d been living before it and thought I had moved beyond the trauma. I felt (and still feel) changed for the better–closer to loved ones, more empathetic and ambitious for social impact; and the experience brought two new passions into my life: writing and science. My therapist and I decided our work together was finished.

Over a decade later, I began writing a book about my injury and recovery, and the science behind it–from the brain’s fight-flight program (which enabled me to rescue myself) and the evolution of reconstructive surgery over thousands of years of war; to peripheral nerve regeneration and neuroplasticity, which made my extensively-repaired hand useful again. I titled the book Beautiful Trauma, to reflect the unexpected coexistence of the wonderful, and the terrible, in my experience.

Living alone in 2020-21, as I had been at the time of the accident, I wrote in isolation for hundreds of days while COVID locked down the planet, and the US burned with racial injustice and political corruption. Increasingly, waves of irritation, grief, and despair left me gasping for relief, and I considered this span of time a fresh trauma, symptoms of which would surely abate when the pandemic did. But when they continued to flare occasionally even a year after the last COVID restrictions were lifted, it finally occurred to me that I might still have accident-related trauma to process. So after some time seeking the right practitioner, I recently began a course of EMDR (Eye Movement Desensitization and Reprocessing) therapy, which I’d learned about through my book research.

The effects so far have been remarkable. The process has surfaced questions I’ve never contemplated before; and these, in turn, have prompted insights about how old family crises, my accident experience, and my depression/anxiety might be connected–insights that I don’t believe I could have arrived at through any other means. Processing these in the safety of the sessions, I’ve tapped wells of anguish I didn’t know I harbored. Outside the sessions I feel an old vigilance relaxing, surrendering intellectual and emotional bandwidth that I hope I can redirect toward accepting what I can’t change, and pursuing what will enrich my life and that of others. I know that EMDR won’t eradicate stress and sorrow from my life. But based on my experience of it so far, I believe it will help me live with more ease and optimism, as talk therapy did before it.

I find it astonishing that I didn’t consider pursuing trauma-focused therapy until I’d lived almost 20 years post-accident and written a whole book on trauma. But then, trauma weaves itself into one’s full-body experience in subtle ways that can be difficult to recognize, or may only be visible over time as patterns of suffering emerge. I also needed to sit with my new research knowledge for a while before understanding that I could be suffering the effects of trauma despite not meeting the precise clinical criteria for PTSD and that EMDR wasn’t just for soldiers.

And, I suspect that the way we talk about psychological resilience as a society also plays a role. It’s often characterized as a linear, time-bound process; and admired, almost as if it were the product of good character, rather than of innumerable, interacting bio-psycho-social factors, many beyond our knowledge or control. As such, you work hard at recovery, you progressively improve, you finally “get over” the trauma–and you’re a hero! Who wouldn’t want to live that story arc? I needed to believe it in the months following the accident, while I exhausted myself every day, physically and psychologically, grappling with the challenges of my upsetting “new normal.” But months later, as I regained health and hand function, and thrived otherwise as well, the powerful narrative may have distracted me from psychological healing yet to do.

What is resilience, then, if not getting “over” or “past” life’s most painful experiences? I see it as a life-long process of learning to live with energy and optimism, despite intimate knowledge of our fragility and mortality. It can be grueling work, requiring substantial social and professional support to which I’d wish everyone adequate access. But it offers freedom from the depleting pain of resisting the human condition and the lost opportunity that results from not seeing the facts of our lives as they are. And there can be beauty in it–like the compassion of helpers, the wisdom we gain through coping that we pass on to others, the doors opened to new experiences and relationships to be cherished. Resilience is being alive.

In 2008, Rebecca Fogg walked away from her New York life and successful career in financial services to move to London, where she co-founded the Institute of Pre-Hospital Care at London’s Air Ambulance and continues to work, write, and learn Scottish fiddle. A graduate of Yale University and The Harvard Business School, she spent five years (2014-2019) researching and writing about healthcare with renowned Harvard Professor Clayton Christensen, author of The Theory of Disruptive Innovation. BEAUTIFUL TRAUMA: An Explosion, an Obsession, and a New Leases on Life (Avery, Penguin Random House), is Fogg’s first book. It was awarded the 1029 Royal Society of Literature Giles St. Aubyn Judge’s Special Commendation for work in progress.

By Galen Tinder

I awoke one morning two weeks away from completing my last year of graduate school, the morning after spending a pleasant Saturday day researching in the library, and it was there. I could tell before I raised my head from the pillow. I didn’t know what “it” was exactly—some combination of hyper-anxiety and primal dread. 

When I stood up, the room—a small dorm habitat—wheeled around me ominously, like an out-of-balance carousel trying to spill me onto the ground. I sat back down. When I glanced tentatively at yesterday’s newspaper sitting at the foot of my bed, images pulsed and swirled themselves into a chaotic panorama of headlines, photos, and text. I was suddenly aware that my heart was beating fast and loud. Several minutes later, anxiety pushed me out the door into the hallway. It was a Sunday, so few other students were around. I paced up and down the hall, back and forth, passing the day in frightened perambulation. I did the same thing the next day, and the next—it seemed the only way to keep panic from engulfing me. 

I eked out my last days of school, but despite my effort to act and appear normal, and my evasions of human interaction, my friends caught on that something was amiss and asked what was going on. For the first of many times over the next nearly four decades, I was confronted with one of the isolating curses of severe depression—its inexplicability to the uninitiated. It is so outside the realm of ordinary human experience as to be indescribable. Acute depression is not like being sad in the ways nearly all of us are at times, nor is it like feeling out of sorts. If sadness looks like a harmless gecko, severe depression looms like an all-devouring Tyrannosaurus rex. 

After four months, the “it” left as mysteriously as it had come. I was so relieved that I chalked up the whole ghastly business to an idiopathic anomaly. I moved on with my life, giving it no more thought.  

But six years later it came back. This time, I was prevailed on by people and circumstances to get medical help. My primary care physician referred me to a local psychiatrist of his acquaintance, one of a number I would consult over the coming decades. It was from this first psychiatrist that I first heard words that, when strung together, went like this: severe clinical, recurrent, treatment resistant, unipolar depression of the anxious (in distinction from enervating) type. Eventually I also heard the term “endogenous,” meaning that in my case the depression’s etiology was my inner chemistry rather than problematic external circumstances. 

When my second episode struck, I was several years into my first “real” job, meaning the one for which I had been educated and trained. Eventually, I could not keep up with my work and took a couple weeks off to fine-tune my medications—I stopped two and started two others. This episode also ended abruptly after several months. My psychiatrist at the time warned me that a person who has two bouts of clinical depression has a 50% chance or better of further episodes. Sure enough, after the second attack, I had six or seven more episodes over the next 28 years. Most lasted four or five months, limited, perhaps, by my ever-rotating amalgam of medications. 

During my career with depression, I have taken more medications and combinations of medications than I can remember. I began with SSRIs and later SNRIs like Effexor, atypicals like Wellbutrin, and an MAO inhibitor, Parnate. My current doctor has tested my genes in the hope of identifying chemical matches with particular medications, but in my case, none turned up. 

I have been hospitalized four times, once for suicidal ideation. People say, in a macabre joke, that a hospital is no fit place for sick people, and this was true for me. Though “safe,” I always felt worse institutionalized than at home. Ten years ago, I had electroconvulsive therapy (ECT), to no avail.      

My inability to describe to others what acute depression feels like has been frustrating and magnified by aloneness. I often saw in the expressions of others their wondering about the characterological weaknesses that underlay my paralysis. I sometimes wondered this myself, and felt shame at being undone by this invisible ailment that was so hard to treat and seemingly impossible to prevent. Today, I can in some measure empathize with people afflicted with auto-immune disorders that are so hard to diagnose and treat and impossible to see.

Occasionally people ask me what it feels like to be depressed. I respond that depression, at least for me, doesn’t have feelings. It crushes them. I can’t, for example, say that depression makes me feel sad or frustrated. Severe depression crushes ordinary human emotions, the ones necessary to our sense of humanity, beneath the fist of terror and despair. It is not even that depression leads to despair. It is itself despair. Desperate for an image, I once suggested to an inquisitive friend that he imagine himself jumping off a ten story building, and landing feet and legs first on the concrete below. I asked him to conjure the agony of his feet and legs fracturing into uncountable shards of bone and shreds of sinew. This is how, I said, my brain hurts. 

In one of the most eloquent books about depression ever written, the autobiographical Darkness Visible: A Memoir of Madness, 20th century novelist William Styron brings his literary gifts to a description of his own depression. He calls the term “depression” a “slug” of a word that has slithered its way into our language to describe a devastating  cataclysm. Styron acknowledges the limitations of language to describe an experience incommunicable to those not possessed. He suggests the term “brainstorm.” My own meteorological conjuring is an F-5 tornado laying waste a home, a neighborhood, and a town, leaving no signs of life on the horizons.  

Sometimes called a slim tour-de-force, Styron’s book first appeared as a long essay in a 1983 issue of Vanity Fair before it was issued as a book. Soon after it came out, I bought a copy for my wife and in years since have referred people to both the essay, which can be accessed online, and the book. In either rendition, it can be read in a couple hours. Styron writes that “the pain of severe depression is quite unimaginable to those who have not suffered it, and it kills in many instances because its anguish can no longer be borne.” I first read this passage 20 years ago, when I was in between episodes. I began to weep because for the first time I knew that there was another human being who knew what I felt like when in the grip. 

Severe depression scares people and even those closest to it don’t know how to help their loved one to feel better. They sense that there is nothing they can say, but out of their own pain and the frustration of helplessness may remark, “Just hang in there…”; “Eventually it will get better…”; “Have you tried positive affirmations?” These efforts at comfort and exhortation at best make me feel misunderstood and more isolated. The distinguished educator Parker Palmer relates that when he was depressed people tried to comfort him with assurance of his eventual recovery. But the person who brought him solace was an old friend who came over every day to massage his feet. Most days, nothing was said between the two men.   

After my second episode of depression, I began to research the nature, causes, and available treatments. After 30 years, I have kept at it but no longer anticipate making any dramatic discoveries. For decades we have thought that an insufficiency of neurotransmitters causes depression; nowadays we are not so sure. A diminishment of brain chemicals often accompanies depression, but correlation is not causation. In recent research a significant percentage of those helped by the medication they were given turned out to be ingesting a placebo. These days most specialists acknowledge that we don’t know what causes depression for a given person, though genetics and early childhood abuse (I qualify for the first, but not the second) can play a role.

For decades I got depressed, then got better, got depressed, got better, and so on without gaining any wisdom about my condition or myself. I was convinced I was a case of defective biology and messed up brain chemicals. My worst episode began nine years ago and lasted eleven months. For much of the time I was confined to bed. I came up with a coping mechanism that sounds odd, but kept me alive. Every morning around 11:00am I decided not to kill myself that day. I then immediately reassured  myself that tomorrow was another day on which I could choose differently. Then the next morning around 11:00 I made the same decision followed by the same reassurance. In this manner I kept myself alive day by day, for months. Oddly, every morning I would feel girded by Camus’ statement that the only serious philosophical question is that of suicide.

After seven months, the psychiatrist I was seeing, who was the kindest of them all, told me regretfully that she didn’t know what more she could do for me. For some reason, her acknowledgement energized me enough so that I drove home and opened Google. In a few days I turned up the name of a physician who practices what is sometimes called biopsychiatry. This means, in part, that the doctor is skilled in the efficacious mixing of medications and supplements. A cocktail, as it is called.

After taking my history the psychiatrist said that while I had gone through a rough time, she was confident that she could help me get better. I was surprised how much her statement lifted my morale. After two months under her care, I recovered. Aside from a minor blip now and again, I have been well for the last eight years. 

What does this all mean, this episodic career in depression? Perhaps there are two questions here, the first being what does it mean for me, for who I have been and who I am today. The broader question is that of what suffering means for all of us, for those who have walked a far harder road than have I. Is it all meaningless? Does it have a purpose, if not always then sometimes?

For most of my life, my episodes of depression, lasting, until the final one, an average of five months, have seemed unrelated to my non-depressed life. They came spontaneously and left the same way, unconnected with life events, my pre and post psychological condition, never caused, so far as I could tell, by emotional stress. So they struck me as biochemical eruptions over which I had no control. They were attacks disembodied from my “normal” life. When they left, I resumed this life until the next time.

Today I doubt it is so simple. I mentioned earlier that depression crushes feelings like happiness, sadness, empathy, and vulnerability. Recently I have realized that when I emerged from a depression, these emotions stayed crushed. Perhaps I thought I could avoid further misery by not feeling, by retracting into myself, taking my right brain off line, never developing a capacity for authentic self-reflection and vulnerability with myself. Tongue not entirely in cheek, a friend once diagnosed me as suffering from habitual and excessive analyticity. I now think that this quality may have been both a consequence of my depressions and a maladroit defense against more of them in the future.

In any event, it has struck me over the last several years that a life of self-retracted feelings has not served me well as either a depression dampener or a way to live. I have gradually taken hold of a different kind of living marked by feelings of sorrow, happiness, regret, reformation, vulnerability, empathy. I don’t know how this has happened, but a different way of living has laid firm hold of me and blessed me, at the age of nearly 70, with new vistas of rich experience. Is this in some way a mysterious gift of depression? I would sure like to figure it out, but doubt I will. 

I was recently trying to characterize to a friend the changes I have experienced and my desire to understand their etiology. When I finally stopped talking, she smiled, cocked her head, and said “Who would have thunk?” Perhaps this says enough, at least for now.

Galen Tinder is retired from a career in counseling and now spends much of his time in the field of narrative studies and practice.

Audio production by Alexandra Salmon

Health Story Collaborative · Storytelling for Health and Justice: Gaynell Fuller

Gaynell contracted COVID-19 in April of 2020 and then dealt with chronic symptoms of extreme fatigue, body aches, and an altered sense of smell for more than a year. Gaynell, a nurse at a long-term rehabilitation facility, feels certain she was exposed to COVID-19 at work. As the facility was hit hard by the virus, many of the other nurses—some sick with it and some afraid of catching it—stopped showing up at work. Gaynell’s responsibilities increased dramatically. She cared for many sick patients and eventually fell ill herself, despite her best efforts to protect herself. When her symptoms made it impossible for her to go back to work, she applied for workers’ compensation, but administrators responded that her illness had been “community acquired” and denied her claim. At the time, Gaynell was raising her twelve-year-old grandson alone. She had bills and rent to pay; she had to put food on the table. Still, in this flawed and deeply unjust system, she was offered no accommodations at work and no financial support. 

“I was never one to just sit back and collect,” said Gaynell. “I have worked since I was thirteen years-old. ”When she finally applied for unemployment, she felt stereotyped as someone trying to take advantage of the system. She was deemed ineligible, and ultimately her case was sent to the fraud department due to confusion over her name. She had applied for unemployment once before, more than twenty years prior, under her married name, and now she was applying under her birth name. She found herself going in circles, dealing with many “nasty” people on the phone and hitting dead ends. The process took persistence, not to mention time and money. She was required to send for her birth certificate as proof. “It’s not possible for everyone to trace their roots,” she said, “and forget about being undocumented.” Ultimately, it took help from a state legislator to finally get her claim approved. Gaynell recognizes that her education and connections in the community helped her to navigate the system, and she is very clear on the fact that many people in her community don’t have such resources. Gaynell isn’t afraid to be assertive, but still, the process was exhausting, and she nearly gave up many times. Her story underlines how the impacts of entrenched racism—poverty, lack of access to education, and bias in the criminal justice system, just to name a few—amplifies the dire impact of COVID-19 on people of color. 

***Adapted from The Healing Power of Storytelling: Using Personal Narrative to Navigate Illness, Trauma, and Loss. By Annie Brewster and Rachel Zimmerman. 2021. 

By Susan Epstein

Interesting, the different paths life offers, the lessons learned, and the irony of it all. A lifetime of experiences cannot always prepare you for what’s ahead, but the hope is you will have learned enough strategies to deal with whatever comes your way. And then something like lung cancer hits.

When you are faced with a dreadful diagnosis, what is there to fight back with? There was no point in falling into “Why me?” I had to go deep, all the way back to an athletic career that I once cherished, but then abruptly ended, leaving me with a sense of failure and loss. Competitive running had been my life, until it wasn’t.

1986

The summer of ’86 was going to be the first time I had taken a trip to Europe if I made the cut. I had qualified to run the10,000 meters (6.2 miles) track event at the prestigious Bislett Games in Oslo, Norway but needed the funds to cover the travel. New Balance, my sponsor of eight years, was eager for me to compete through the summer and agreed to send me along.

 At midnight, under bright skies in this Norwegian town, I ran twenty-five laps around the 400-meter track in 33:12, far from my personal best, but a solid performance considering this was my first track race overseas. Ingrid Kristiansen, a native, lapped the entire field, setting a world record in 30:13.  The top Americans would be flying out the next day for Moscow to compete in the inaugural Goodwill Games, created by the cable television tycoon, Ted Turner. Mr. Turner was making a dream come true after the US boycott of the 1980 Olympic Games. He organized the event as a way to ease tensions during the Cold War through friendly athletic competition between nations. This would be the first time in 11 years that athletes from the Soviet Union and the United States competed on the same playing ground in a major international event.

Having placed 5th at our US National Championships, I was not considered for the team traveling to Russia. As timing had it though, Mr. Turner wanted to broaden the women’s field and was looking for an athlete to make the trip to Red Square. I was respected as a marathon runner, ranked 10th in the world in 1983, just missing a spot on the ’84 Olympic Team. The disappointment was tremendous, but I finally bounced back in 1985 placing 5th at the New York City Marathon, crossing the finish line as the first American female. My agent passed my name on to Mr. Turner knowing I would be in Europe, and the deal was sealed. The only catch, I would be running the 5000 meters (3.1 miles) a mere sprint for someone more accustomed to the 26-mile marathon event. Still, I was thrilled to be wearing USA across my chest.

Stepping out on the track, on a hot July evening in the packed Olympic stadium, I watched the other runners in awe as they went through their pre-race routines. I was overcome by emotion knowing that I was the 4th American woman representing our country. The horn sounded and the competitors lined up on the eight-lane track, 20 of the fastest women in the world. Each runner was introduced in front of the crowd of 100,000 as their respective country flag was raised. The stars and stripes directly in my view, I thought to myself, “This is my Olympics.” The gun fires and the runners are bunched tightly. Running somewhere in the middle of the pack, I came through the first mile in 4:51, astounding since my best open mile ever was 4:48. I didn’t feel anything at first, just concentrated on pace and strategy to avoid being tripped. The field began to spread out with the Russians blocking Cindy Bremser, our top US entry, from taking the lead. My only goal was to run my personal record (PR) and finish strongly. A good friend of mine from Belgium, Ria Van Landeghem, a fellow marathoner, was just a few strides in front of me. I was struggling to stay with her, sweat stinging my eyes, legs dead weight, all side effects from running that first mile too fast.

 My instincts were to push through the fatigue, but my body rebelled. I remember thinking it was so hot, hotter than the hardest training days in Dallas, Texas, and knew this was not a good sign. With all the excitement up front, the two Russians beating Cindy by eight seconds, I was able to finish the race without much attention to the back of the pack. I finished in a respectable 8th place but walked off the track bathed in fatigue with feelings of failure.

On an easy five-mile morning run the following day, Ria asked what happened to me; she assumed I was going to pass her on the final lap thinking I had greater leg speed. I laughed…leg speed, more like dead legs! I shrugged it off and attributed it to poor pacing. I continued the tour from Birmingham, England to Wales, to Paris and back to London, racing in shorter-distance events of 1500 and 3000 meters. My mediocre performances along the way caused me to curtail my track season and head back home to our U.S. training facility in Dallas. I would undergo numerous physiological tests at the Human Performance Lab, led by my coach Robert Vaughan, Ph.D. The usual battery of exercise tests and blood values were taken at various workloads. The test results revealed my season was over. In exercise physiology terms I had “over-trained.” This was a common conclusion when athletes started performing poorly without any concrete explanation or solid evidence to support. The treatment: easy running and no competition for several months. The setback brought back lingering negative thoughts causing me to question the path my running career had taken me.

2000

 Much had been accomplished since my departure from the track & field world, leaving behind the highs and the lows of a once so important athletic career. A graduate degree in exercise physiology was a natural progression after retirement, but then that subject too, became all too consuming. I continued my academic journey and completed a master’s degree in speech pathology, a field I thought would take me far away from the study of diet and exercise. During the years that followed, I maintained my weight to a more ideal standard, exercised recreationally learning tennis for the first time, and took stock in relationships with family and friends.

 After settling in Buffalo, New York, where I raised two amazing daughters, competitive running had taken a permanent back seat. A career in neuro-rehabilitation opened the door to the fascinating world of the brain, this organ inside our head that controls all bodily functions of a human being. I had totally underestimated this complex structure which controls thought, memory, emotion, touch, motor skills, vision, breathing, temperature, hunger, and every part of our being. After solely depending on my body for running, I was surprised how I took my brain for granted. Joining the neurology team at Buffalo General Hospital changed that notion. Of course, speech and language skills are housed in the brain, but healthy living had to be part of the prescription as well. I began to combine health behaviors, such as sorting fruits and vegetables, with cognitive retraining. Preventative health behaviors became as important as the speech therapy session. My motivation came from the devastation I saw in my patients’ lives following a stroke or those living with multiple sclerosis, or Parkinson’s disease. Every aspect of a person’s being was affected. Many lost their vocation, their ability to communicate, and much of their livelihood.

 The department of neurology, newly named the Jacobs Neurological Institute (JNI), became the forerunner in using a wellness model for treatment instead of the traditional disease model. While the scientists were at work developing treatments and cures, my job was to make each patient healthier to prevent secondary disease, such as cancer, stroke, or heart disease. However, quality of life (QOL) should be the focus of all intervention. Then again, what does quality of life look like exactly? I certainly had learned a great deal after surrendering to the solitary life of an elite athlete and sought out to develop a doable program for people to find happiness and life satisfaction through adopting a menu of healthy behaviors. Diet and exercise, the usual prescription, had to be tailored differently for those with compromised health, limited mobility, and low motivation. Hence, I developed the LIFE program (Lifestyle, Independence, Fitness, and Energy); a simple can-do approach to regaining confidence and satisfaction living with a new normal. Due to the success of the 12-week program, I went on to author a book based on the foundations. The LIFE Program for MS was published by Oxford University Press in 2009. The irony…the LIFE program was to become the “new normal” for me.

 2020

 NSCLC (non-small cell lung cancer) Adenocarcinoma of the lung was the diagnosis. NSCLC is a disease in which malignant (cancer) cells form in the tissues of the lung, usually found in smokers, but can occur in non-smokers as well. With disbelief, I rehearsed in my head that lung cancer was not supposed to strike a former world-class runner, one who dedicated her career to helping people learn to live well despite chronic disease. I was dumbfounded to say the least. The mass had been growing for five years, ignored by several physicians, when in fact some indication of a problem was noted on two CAT Scans taken in 2015; but “I looked so good.” Ironically, I could still run, play tennis, and remain physically active, all of which disguised the illness. Finally, the medical treatment: surgical removal of the entire lower lobe of my right lung, followed by chemotherapy. But the “QOL” remedy was totally in my hands.

 2023

 I couldn’t figure out where I was going with this story until today, when I was playing tennis with some great gals. It was just one of those days where my double’s partner and I played well coming from behind to win. Regardless of the victory, we were doubled over with laughter just enjoying ourselves, not taking the game too seriously. My lung cancer has come back, despite my optimism and healthy living. However, my “QOL” remedy is stronger than ever, and will again defeat the disease. What have I learned since letting go of my singular life as an athlete? The crucial need to build healthy behaviors that enhance one’s happiness and life satisfaction. It is simply finding the laughter and joy in friendships. Of course, there’s more to my recipe for living with Cancer and I attribute this newfound strength to the life I rebuilt after defeat on the playing field. The 3-F’s…faith, family, and friends are the basic ingredients, and then you add service to others, add a touch of intellectual stimulation, some musical notes from my choir, and yes, healthy eating and exercise. And perhaps a glass of wine or two. There you have it, my personal recipe.

Sue J. King Epstein is a native of Birmingham, Alabama and now calls Western New York her home. She is a Wellness Strategist, educator, author, and mother of two extraordinary daughters.

Listen to a transformative story sharing event, hosted by students from the Harvard Medical School advanced course elective, "Harnessing the Healing Power of Stories: Narrative Theory and Narrative Practice," taught by Annie Brewster and Jonathan Adler of Health Story Collaborative. 

You will hear about the lived experiences of two individuals, one navigating an advanced neurological condition and the other mental illness and substance use.  The third storyteller's story is not featured in this video due to personal privacy preferences, but they are present in the discussion.

View more Healing Story Sessions here.

HMS Stories of Illness and Healing 2023 2 from Health Story Collaborative on Vimeo.

by Emmett Lyman

I grew up in a small town in central Connecticut with a family that loved the outdoors. In the early years of my development we spent our free time traveling, backpacking, camping, and exploring the world around us.

When I was 13 years old my Boy Scout troop scheduled a day of rock climbing at a nearby cliff, in all honesty just a large glacial erratic boulder in the woods. It was my first time climbing a rock and using rope systems for safety. I was tentative at first, but as I began to climb I realized that it felt natural to me, like something that was pre-destined to be part of my life. I spent the day climbing around on the moderate terrain, certainly not doing anything that would be considered legitimate rock climbing to a serious adventurer, but at the time it felt like the opening chapter of a book that was entirely new to me, and it drew me in.

Seeing a photograph of my young self from that day, I’m now aware of just how easy the challenge was and how utterly silly I looked with poor form, laughable equipment, and little to no inherent skill. But the smile pasted across my face showcased a newfound love of the sport. I still remember the feel of rock touching my fingertips, my shoes edging to support my body weight on small ledges and cracks, and the thrill of weighting the fixed rope as I leaned back to rappel down the rock face for the very first time.

Many years later, my path had turned away from climbing as I’d moved to Boston and prioritized other things like furthering my education and career, fixing cars and motorcycles, and even playing golf, which is a sport about as far away from climbing as you can get. While I was at a posh training program in Miami one day, my best friend Pat called out of the blue and asked if I’d like to take a rock climbing class with him. Little did I realize at the time that he’d stirred a long dormant, but ever-present passion deep within me. Together we became engrossed in climbing and the climbing community, and we both knew it would remain with us for life.

Still, other priorities continued to guide my path. I was pursuing a career in business as I worked diligently to pay off grad school loans, and I moved to Washington DC following a beautiful and brilliant girl that I’d fallen deeply in love with. However, it wasn’t long before I found myself in someone else’s city, abandoned with a shattered heart. I fell into a terrible depression far from friends and family. It’s strange to reflect that now, years later and after a life-changing injury, this loss remains the most painful event of my life.

Pat and other climbing friends from my prior life in Boston desperately supported me across time and distance as loneliness threatened to consume me. One August weekend, two very close friends, a couple named Alissa and John, invited me up to one of our favorite climbing areas in the New York Catskill region. This wasn’t unusual, as we came to this climbing mecca regularly given its similar distance from our two cities. This time, however, they secretly invited Lauren, a girl I’d never met, in hopes that we might connect with each other.

I climbed that weekend with John, and Lauren climbed with Alissa. The cliff extends for miles through the forest with thousands of established climbing routes, so when we bumped into each other at the base of a route that was well away from the more popular areas, it was undoubtedly an orchestrated encounter. Lauren’s eyes caught mine with a shy smile, and I smiled back feeling an immediate spark of attraction. We exchanged pleasantries, and then John and I carried on down the trail. 

Once out of earshot, John nudged me with a grin and asked “She has a great rack, doesn’t she?” The double entendre referred to the rack of climbing equipment that Lauren carried on her harness as she prepared to lead Alissa up their next objective, and it was indeed nice. But the crass and uncharacteristic joke from my strait-laced friend left us both laughing like teenagers.

Lauren and I chatted at length during a group dinner that night, and quickly made plans for a climbing date a couple weeks later. My friends’ gambit worked, and I soon found myself smitten once more, eagerly searching for an avenue to leave my painful memories in Washington for another new beginning in Boston with Lauren. Within a few months I convinced my employer to let me to work remotely, still a rare feat in those pre-pandemic times. It wasn’t long before we were living together surrounded by friends and the climbing community that we both loved so much.

Three years later, Alissa, John, Lauren, and I had grown inseparable and we climbed together all over the world. We decided to plan something new for the warm summer solstice of 2018, and set our sights on an unexplored region of the Alaska Range of mountains. We’d spent years honing our skills in established climbing areas, where guide books describe all the difficulties and solutions to well-trodden routes up rock faces, and in familiar mountain ranges teeming with tourist hikers following trail markers toward known summits and vistas. We felt it was time to take a step into the realm of exploration, a pursuit that is slowly disappearing from the toolbox of many mountaineers as more and more of the world’s finite hidden wilderness areas are explored.

Our plan was to find an inspiring mountain that no person had ever climbed or seen before and establish a new route to the top. A close friend and mentor of ours had built his young climbing career doing expeditions like this throughout Alaska in the 1960s and 70s, and he helped us plan for the inevitable hardships we would face. Following months of preparation, a tiny bush plane dropped us off two at a time on a narrow gravel strip in the middle of an uncharted river deep in the sub-range aptly called the Hidden Mountains of Lake Clark National Park.

We portaged hundreds of pounds of food and equipment through thick groves of alders and underbrush, following the river toward its glacial origin and a line of distant jagged peaks erupting from the earth. After several days of thrashing through unforgiving terrain, we discovered a small glacier ringed by a cirque of stone towers that we surveyed together for promising climbing routes. We settled on our target, a twin-spired peak we dubbed Mt. Sauron.

After hunkering down for two days in camp to wait out unpredictable Alaska storms we awoke to promising weather and gathered up our equipment. We snowshoed across the glacier to the cliff face and began to climb by two different routes, both couples venturing into the unknown. I remember feeling utter euphoria as I quested up through virgin rock with no knowledge of what awaited me above, finding my own way in a manner I’d never done before. I was finally blending the physical challenge of rock climbing with the heightened mental challenge of unlocking a puzzle to find the best solution. It was the happiest day of climbing I ever experienced.

Unfortunately, this is where memory fails me. Sometime late in the day, about two thirds of the way up the cliff, the objective hazard that always looms in the mountains came for me. I was struck by falling rock, either let loose by the sun’s warming rays on frozen terrain far above me or perhaps pulled down by my own negligence as I climbed. We think the rock snapped my head back, slamming my rigid foam helmet into the back of my neck and partially severing my spinal cord at the C6 vertebra. What followed was an extraordinary rescue by my close friends, as well as a unit of elite military parajumpers that navigated a Pave Hawk helicopter at breakneck speed hundreds of miles from Anchorage and through the unfamiliar mountain range.

Several weeks later, I woke from a deep and bizarre dream state that I later learned was an induced coma to find myself in the Intensive Care Unit at Providence Hospital in Anchorage. The rockfall had caused a traumatic brain injury, and the coma was my best chance of avoiding total loss of higher function following brain surgery. Over the ensuing weeks, I was visited almost constantly by my climbing team, Pat and his family, who had flown up from Rhode Island, and many members of my own family from Connecticut and nearby Juneau. They had all rushed to Anchorage when my neurosurgeon advised them to get there as quickly as possible so they could say goodbye. 

I proved to be luckier than he expected and survived to discover a new and different type of life. As the fog gently lifted, it was hard to differentiate between the strange sea of dreams my mind invented to conceal its inability to grapple with the trauma, and the new unfamiliar reality that I was waking to. The sterile intensive care setting, the unknown faces of my medical team, and an unfamiliar detachment between my body and mind left the real world feeling as distant as the dream world I’d been inhabiting for weeks. 

The first two years with a spinal cord injury I felt like a very different person, and at times it seemed as though my very humanity had been stripped away. I felt weak, confused, and entirely dependent on others. Following twelve weeks of rehab at Spaulding Hospital in Boston, where my extensive injuries kept me from making significant progress, Lauren and I moved to an apartment across the street from the facility. I enrolled in an aggressive regimen of outpatient therapy, but still made little progress.

Meanwhile, in my confused state I failed to see the warning signs of a pressure sore developing, and less than a year after my accident found myself bedridden for months preceding and following flap surgery to repair the damage. For Lauren, the emotional trauma of the accident itself and the unrelenting difficulty of having to care for me with painfully little reciprocity weighed heavily, and eventually it broke her spirit. She left in a gloomy cloud of mutual sadness.

It felt like those early years were marked by an endless series of similar scares and setbacks, and it was difficult to see a path forward. Yet there were glimmers of hope. Shortly after recovering from the pressure sore, I got a handcycle and was thrilled to rediscover joy in the exercise, movement, and social engagement it gave me.

Nine months later I took possession of a manual wheelchair, which we’d thought during my stay at Spaulding I’d never be able to operate. I immediately felt comfortable in the new chair, and came to prefer its raw simplicity to the impressive technology of my power chair. It felt more like an extension of my body and offered a more direct connection with my surroundings, similar to the way tight-fitting climbing shoes used to transform intimidating cliffs of stone into inviting playgrounds where I felt most alive. I’m only now starting to appreciate how much that direct connection has always mattered to me.

When the Covid-19 pandemic struck in early 2020, my day-to-day existence was still enabled only by support from caregivers that came in the morning and evening to help with activities I was unable to do for myself. Most important among these were tasks like managing my bowel and bladder, showering, transferring to and from bed, and getting dressed. I had three caregivers on a rotating schedule, but one by one they fell ill and dropped out of service. One morning I got the dreaded phone call from the last remaining caregiver telling me that she didn’t feel well and was not coming to work. I was trapped in bed – a catastrophe I’d hoped would never come.

Terrified, I called my sister in Connecticut and she drove 2½ hours to perform the caregiver role that morning. She then told me flatly that we were going to pack my bags and I was moving in with her and my three nieces for the foreseeable future. At that moment I saw one thing with perfect clarity - my single most important objective was to find a way to live independently without requiring another person to drop everything and care for me. I wanted to make sure I never again felt so exposed and vulnerable.

 Since that morning three years ago, I’ve invested all my effort into reducing my dependence on others. I tell myself that this will mean I can once again play the simple role of friend, brother, or son rather than patient. I’m plagued by the memory of being stuck in bed without the ability to rescue myself, like a formative childhood trauma that haunts me years later.

 My journey has taken me to rehab centers across the country to learn new skills, through medical procedures to simplify my care needs, and into several housing arrangements where I experimented with ideas on how to adapt my environment to my disability. I solved one small challenge at a time, and I’m fortunate that the unique characteristics of my injury have allowed me to achieve real independence and with it the confidence that I won’t again feel trapped or abandoned. The sad irony is that by working so hard to achieve self-reliance and protect myself from being abandoned again, I know that in some ways I’ve pushed away others when they just wanted to help.

 A mental survey of my fellow quads throughout this community leaves me awestruck by how others have managed to emerge from their injuries to lead successful careers, start families and raise children, and give back to the disability community with endless commitment to mentorship and fellowship, all of them ways that I’ve fallen behind. Our injuries force us to be selective in how we invest our time, and zealous pursuit of one goal means profound trade-offs in others. No one can do it all. I wonder how I’ll feel about the path I chose when I look back years from now.

 These five years have also exposed for me a hidden truth about spinal cord injuries. While we’re capable of remarkable adaptation to solve complex challenges, we’re inevitably caught off guard by new and unexpected complications that often prove more difficult than the paralysis itself. In my case it’s a condition called heterotopic ossification. A massive bone structure has grown to encapsulate my hip joint, distorting it in a painful way that reduces my function and disrupts the nearby organs. It’s a poorly understood condition that leaves even knowledgeable clinicians with little to no appreciation for the challenges it has created.

 It’s hard to blame them. There are only subtle indications to an observer that the torque on my skeletal structure twists me violently sideways and prevents me from lifting myself during transfers, that the constant pain emanating from my hip causes intense tone and spasms from my fingertips to my toes, and that the dysfunction of my digestive system due to unwelcome bone constricting it has warped my once healthy diet to a limited palette of liquids and a few heavily processed foods.

 The limitations imposed on my body have meaningfully changed how I live my life, how I view my surroundings, and how I make use of scarce resources like time and energy. Still, I see within myself a familiar spark, the core of a person that remains undamaged and unrestrained by the physical changes around it. I will never again get to climb unknown cliffs in uncharted locations, but the spirit of exploration and adaptation persists, as do my most valued friendships.

 I’m buoyed with confidence gleaned from the successes that I’ve enjoyed over the past several years. I’ve realized that while this disability is restrictive and unforgiving, we can still learn to live our best lives with it. By forcing us to consider what matters most, it can actually help us focus on priorities that we might otherwise have neglected.

 There’s no cure for spinal cord injury and, strictly speaking, there’s no recovery from it. But this is not a terminal condition, and it’s one that can teach us to find new sources of strength and discovery. I hope that I and all my fellow members of the spinal cord injury community continue to look beyond our scares and setbacks, and unlock new routes to climb through this unknown terrain and reach the beautiful summits of our own hidden mountains.

By Brett Swanlund

I’ve always been an active person and someone who likes a challenge. Growing up I played a wide variety of sports, never much of an all-star but always a great role player. Skiing, snowboarding, basketball. One pick-up basketball game in my early thirties, I missed about 6-8 wide open shots or layups. Frustrated with myself, I asked “Damn why can’t I get any shots to fall?! “An opponent, one of the more talented ball players on the court, laughed at me. With a smug, arrogant grin he said ‘’Because you have no ball control”.  I guess that was all I needed to get my head in the game. The next game, I hit every shot I took and scored 12 of my teams 21 points. I promptly left after that because I knew I wasn’t going to top that performance. At the age of 29, I enrolled myself in Shorin-ryu classes.  In a world filled with Hollywood theatrics and impractical styles it was refreshing to find something richly steeped in historical Okinawan karate tradition. Statistics show that 1/100 students reach their first-degree black belt but only 1/1000 reach their second degree. Three years ago, I was just a few months away from my 3rd.

My career started when I decided to leave college after a year and a half at Plymouth State University in NH.  In my youth, I had been told that a college degree is necessary to get ahead in this world, but school wasn’t for me. I wanted to make a living working with my hands. I went to work for a small mom and pop plumbing and heating company, but soon ended up working for the National Grid Gas Company.  It was exciting and meaningful work. I didn’t mind working in single digit temperatures, jack hammering through 3 feet of frost, or the oppressively hot summer days.  There is nothing quite as exhilarating as 60-90 pounds of gas pressure blowing in your face while wearing a fire suit and full-face respirator. I loved being outside everyday all day, busting balls with my crew. My coworkers used to bust me up because on the average summer day I’d sweat so much that I’d go through 3 shirts. They’d say “your wife must hate you with that much laundry.”  My wife always said my laundry would break the washer because my pockets were always filled with dirt and pebbles from working in a trench. I’ll have you know that the washer works just fine to this day. I was about 6 months away from being a crew leader before my accident.  Not everyone out there truly loves their job but I did, and having that taken away from me was a bitter pill to swallow.

At my core, I am a family man. My beautiful wife Jennifer is the strongest, most supportive, and loving partner and I am blessed to navigate this life with her.  I met Jennifer 21 years ago in the dingy basement of my fraternity across the beer pong table. It almost pains me to admit that she beat me, but we’ll chalk that up to the two extra semesters of practice she had on me. This year we will be celebrating our 15th wedding anniversary, but we’ve been together for more than half our lives. We’ve built quite a life together and have two wonderful children Logan who is 11 and Kayla who is 8. 

On June 9th, 2020, life as I knew it changed forever. At the height of the pandemic, I found myself going a bit stir crazy. The only social interaction I had was with my coworkers. My dojo was shut so I spent most afternoons after work running on the treadmill and lifting weights at home. Once spring rolled around a friend suggested I take up mountain biking with him. I really enjoyed it, as it got me outside with people.  On that day in June, I met my friends Zack and Dan after work in my hometown of North Kingstown, RI to hit the mountain biking trails. The ride was enjoyable, and everything was going great, until it wasn’t.  My friends were a bit ahead of me and as I crested a small hill, looking up at them in the distance, suddenly my front tire dropped, and I went over the handlebars. I was pile driven into the ground. I never lost consciousness but as I lay face down in the dirt, I knew instantly that I was gravely injured. I immediately told my friend Zack not to move me. He dug out a little hole under my mouth and gave me water.  My friend Dan called 911 and rode out to a nearby parking lot to meet the paramedics and lead them to me.  The paramedics put me in a neck brace and on a board and carried me through the woods to the ambulance.  Looking up at the green canopy above me, I was less concerned for myself than I was worried that my selfish desire to go mountain biking had put the wellbeing and stability of my household in jeopardy.  My wife immediately ran to the hospital but was not allowed in the ER because of COVID. Finally, a nice nurse snuck her in. I apologized profusely through tears, and in the most loving way possible she basically said shut up and assured me I did nothing wrong. 

My first week in the ICU is a haze because I was heavily sedated. My injury had left me a C8 quadriplegic. I also spilt my C1 vertebrae in half but luckily it did not hit my spinal cord at this level, so they put a bracket around it and fused my neck from C3 to T2. They also performed a tracheotomy because I had trouble breathing on my own and put a feeding tube into my stomach. I vaguely remember the first time I FaceTimed with my wife. I couldn’t talk and could barely move my arms, let alone grip a marker with grip tape to write.  Luckily, one of the nurses was good at lip reading.

Once I left the hospital and went to Spaulding rehab, they pulled the trache and feeding tube and I was able to eat, and more importantly drink on my own. I was also becoming much more functional with my hands which made things much better. Visitors were restricted because of COVID. The hardest part by far was not seeing my children, but once, a few weeks in, I was allowed to visit with them in a conference room. I was still weak, in a power chair, but tears of joy came to me instantly. They both climbed into my lap and hugged me as tight as they could. They told me how much they missed me and how much they loved me and I told them the same. Seeing them gave me bit of motivation to stay strong and keep fighting.  I vowed to persevere and make them proud of me, without them there is no story to tell.

I really hit the jackpot with the staff who were assigned to me at the rehab. The two most impactful were my physical therapist, Gillian, and my occupational therapist, Nicole. I won’t divulge which one dropped me on my head the first week, but I was fine and as she claimed it builds character. At a time when I was extremely isolated, they were the only people I had to talk to and confide in.  We basically laughed through every session. Though of course I had my grumpy and mopey days, they made it fun. Nicole was always the sympathetic ear, assuring me that there was still so much I could do and accomplish, like driving and adaptive sports. At the time, I rolled my eyes and didn’t believe her. She is wise beyond her years. Gillian and I had a lot in common, both being close in age, and our love for 80’s and 90’s music. She was truly my comic relief, usually at her expense. I had several hiccups while at Spaulding, including frequent UTIs and C Diff, but I never missed a session even though these things weakened me greatly. I’m pretty sure one session I completely fell asleep while Nicole was stretching and massaging my hands. 

I always had candy in my room. One day Gillian witnessed me take a handful of skittles and was appalled I didn’t separate them into flavors. This resulted in a weeklong poll amongst patients and hospital staff on how to eat skittles.  I won and Gillian’s punishment was to eat a handful of all the flavors at once, probably one of the most hilarious and dramatic moments in Spaulding history. 

As my discharge date approached, Nicole mentioned to Gillian that I’d be fun to have drinks with. When the day came, we exchanged numbers. A month later, Jennifer and I met Gillian and Nicole for dinner and drinks after and appointment. After that, we started doing monthly FaceTime cocktail hours. I’d update them on what I was doing, they’d help me find resources and we’d just laugh and enjoy each other’s company. For my one-year anniversary, they planned a surprise party with Jennifer. It meant so much to me. When they were leaving, my brother thanked them and commented that it was remarkable how much they cared for their patients. They told him I was the only patient who had ever warranted such an occasion. This revelation turned me into a sobbing mess. I was so happy. They had to be my therapists, but they chose to be my friend and that meant the world to me.

Before I came home, my family worked tirelessly to prepare my house. My mother and friend Barry from college started a GoFundMe to help with the exorbitant costs of making my house accessible. I was truly humbled by the amount of support I received. My parents, wife and brother had my bathroom completely redone, had a ramp installed and many other things to make life easier. My brother and his girlfriend Caroline came to the house all the time to play with the kids and to keep Jenn’s spirits up.

The adjustment to coming home was difficult. My spasticity ramped up and I suffered UTIs frequently. I was also battling with a lot of self-doubt and anxiety over how life was going to be. I worried that there would be no place for me back at work now that I had been stripped of the physical attributes that had helped me build a career. I had crippling anxiety thinking I wouldn’t be able to provide for my family and I worried I would never again have a reason to feel proud or accomplished. Some days, I just wouldn’t get out of bed. Being home alone while the kids were at school and Jenn was working was hard. My thoughts went to dark places, and I often ended up crying by myself.  

But then I started going to SCI Boston zoom meetings and it was a relief. I spent at least the first four meetings in tears. At the very first one, I shared that I was worried about how my kids would perceive me and if they’d be embarrassed by me.  The group assured me that they would become my biggest helpers and would love me even more knowing they could’ve lost me.  They weren’t wrong. Logan leads with his “can do” attitude. Every time I lament not being able to help him physically with sports or karate, he tells me that we will find a way, and we do. And Kayla is my little helper. When we go grocery shopping, she pushes the cart and, because we are both vertically challenged, she climbs up on my lap in the chair to grab items out of reach. My kids never cease to amaze me.  I soon decided that sitting around feeling sorry for myself was counter-productive and that I was going to do everything I could to experience all life has to offer. I decided to show my kids that even though life can be cruel and throw curveballs, it’s how you respond that defines who you are.

I started going to an adaptive gym a well as outpatient physical therapy and worked out multiple times a week, usually getting rides from my parents or friends. This inspired me to begin adaptive driving lessons, so that I could drive myself places and help transport the kids. My father built me a countertop at my height, and I started cooking family meals. Once I got back on the road that March with an adaptive van the fundraisers helped me purchase, I wasn’t going to let anything stop me. While the kids were still in school, I was constantly signing up for adaptive sports with Spaulding. I did everything, tennis, kayaking, cycling, mountain biking, archery and I even discovered there was a way to golf again.

What made all these new experiences more rewarding was having someone in a similar situation to share them with.  A few months after I had been home, I was at physical therapy and a young woman named Faith rolled in. At the time, I was the only wheelchair user in this time slot, so it was nice to see someone else in my situation. At first, we didn’t talk much but one day, while leaving, her casters got caught in a crack at the bottom of the ramp and sent her flying out onto the wet snow. My dad helped her back into her chair. To my surprise, she showed up to the newly injured group two days later. Little did I know that it would result in an unbreakable bond and truly special friendship. We’re separated by approximately 10 vertebrae and a whopping 18 years.  That spring, we both volunteered to work with physical therapy students at the University of Rhode Island. As the only wheelchair users, we were in a room by ourselves joking around and basically competing with one another the whole time.  Our relationship is a bit unconventional because if it weren’t for our paralysis when else would you see an almost forty-year-old man hanging out with a young lady barely into her twenties? But let’s be honest, conventional is boring. We have so much more in common than the chair.  We both love being active and aren’t afraid to try new things, we share the same twisted sense of humor and an uncanny ability read each other’s minds. Whenever we’re in a large group and no matter what the topic of discussion, we just look at each other and know we’re thinking the same thing and laugh.  We’ve done so much together--mountain biking, dozens of golf outings, even wheelchair football.  She even loaned me her smart drive while mine was being repaired. I guess I’m lucky her parents always taught her to take care of the “elderly” as she put it.  Seeing all that she does, being a full-time student and working part-time, really inspired me to pursue my return to the workforce more aggressively. She’s like the little sister I never had, though she never passes up an opportunity to remind me I’m old enough to be her father.

The last leg of my journey has been returning to work.  I’ve had the benefit of working for the National Grid Gas Company for the last 14 years. You may not like their rates, but they are a wonderful company to work for who values the knowledge and experience of their employees. And no, I don’t get a discount.  Finally, after a lot of hard work and persistence, I returned to work on December 1, 2022. This was the thing I had wanted most since my injury, to be able to once again provide for my family and make everyone proud. It’s been a bit of a learning curve going from a trench in the street to a desk in an office, but I’m learning quickly. I also have the benefit of seeing my former coworkers every day.

Going forward, I will always strive to make my family and friends proud of me.  I will never let this chair define who I am. I believe with the right mindset you can find ways to overcome physical limitations. I often reflect on the words of retired Navy Seal David Goggins, who always preaches mind over matter and mental toughness: “It won’t always go your way,” he said. “Don’t focus on what you think you deserve. Take aim on what you are willing to earn”. Simply surviving a hardship allows you to continue but in an impaired state. Recovering from a hardship sends you back to your baseline, meaning no progress has been made. To thrive, you have to learn from that hardship. I’d like to think that I have learned a lot and will continue to learn.

by Milena Kozlowska

One of my earliest memories is awash in the bright fluorescent lights of a preschool classroom, surrounded by bold blocky colors and the smell of Elmer's glue. I sat with my legs crissed-crossed on the colorful squares of the carpet, in the center of a cluster of other students. From her chair in the front of the classroom, my teacher asked me a question.

The details have long since faded from my mind. All I remember is the heat of the other kids' eyes on my neck as I stared ahead, unable to answer. Instead, I shrugged. The teacher prodded me for an answer; the kids around me tittered. Fear cemented my silence. I shrugged again. Frozen, I couldn't speak. Instead, I chewed on my lip, peeling all the skin off.

I never spoke. My teachers grew frustrated with me. I would whisper in the ear of my best friend Talia during recess, but otherwise I stayed silent.

Talia tried to persuade me to talk to her other friends. You can whisper to them too, she said. I shook my head and stared down at the woodchips, hiding behind a curtain of long blonde hair. I could speak to my parents and siblings at home because they already knew me. But around everyone else, my throat closed up. My voice fled.

Silence sheltered me. I built walls around my inner world like a fortress. As if I could escape by making myself as small and still and silent as possible.

In kindergarten, all the kids sat in a circle and the teachers led us in song and dance. I never opened my mouth or moved my hands, just watched the other kids.

After class, I went to the bathroom at my house and climbed up onto the sink. There were multiple mirrors, so I could see dozens of versions of myself spreading beyond me, one after another after another after another. Surrounded by reflections, I went through all the moves we'd learned in class, sang the songs under my breath. All versions of me sang and danced along.

Only in that white-tiled world, with its expansive mirrors stretching infinitely on, could I speak. In the classroom, I could only watch. Silence paralyzed me. Like a princess trapped in a tower, I couldn’t break down the walls of my own fortress. Even when I longed to.

Teachers thought I had a developmental disorder, at first. Then I was diagnosed with selective mutism. My mom took me to see a speech therapist, a woman who sat next to me on the floor with stacks of colorful pictures. As my trust in her slowly grew, I started being able to whisper answers to her questions.

Eventually, I'd been in speech therapy for long enough that I could answer direct questions if prompted. Teachers were no longer frustrated. They liked that I was quiet, polite. I didn't raise my voice or interrupt others or goof off like other kids. I kept my head down and my mouth closed and was praised for it. Meanwhile, I chewed up my lips til they were sore, scratched at my scalp till it bled, clenched my jaw till it ached. Bit my nails down to stubs, then dug them through skin already red and raw with eczema.

On worksheets, I wrote in tiny handwriting, the letters as small as I could make them. As if I was trying to make myself as small as possible, disappear between the pages.

Silence stifled me. I felt like I could scream, and no one would hear behind the walls.

By high school, I was speaking: shy, but no longer clinically so. At my waitressing job, cooks snapped at me for calling out orders too quietly. Whenever he saw me trying to get a cook's attention, one of my coworkers would give me a look of sympathy and ask my order, before shouting it to the kitchen himself. "Thanks," I'd say with an abashed smile.

"Why do you talk like that?" one of the cooks asked me once, in his thick accent. "You always whisper." I'd ordered food for one of the residents, and he was piling the mushy vegetables onto a plate.

"This is just my voice," I said as he handed me the plate.

"No, it isn't."

I laughed nervously and left to serve the food. Heat flared somewhere in the back of my throat. I'm not whispering. This is my voice.

What if it wasn't? What if my real voice was still stuck somewhere I couldn't reach it? What if I'd buried it somewhere in the wood chips of my preschool playground and it was gone forever?

Still, I liked some things about being quiet. I liked that people told me things they wouldn't tell others, that people called me a good listener, that most of my life was hidden, that I could keep a little mystery, a little distance. Silence protected me, both as my weapon and my refuge. Behind its walls, I could observe others without being seen, or known.

But when I started college, I wanted to be someone else. I wanted to leave the mute girl behind, somewhere on the outskirts of a school playground with her knees drawn to her chest. I tried to outgrow her, outrun her, in a new place where no one would start off already knowing me as the quiet girl. I joined rugby, a sport where I had to shout at the top of my lungs. I raised my hand in classes. I placed myself in social situations as often as possible, surrounded myself with people. I shaved my head so that I couldn't hide behind my hair anymore, even if I tried.

And yet. And yet. People still kept asking me to repeat myself, became frustrated with my voice. I'm sorry, I said, over and over again. I know I'm a little soft-spoken. No matter how often I tried to raise my voice, that never seemed to change.

Silence found me, again and again and again. I tried to knock down the stone walls that wrapped around my vocal cords, but I could only ever break away parts of them. The rest crumbled into rocks in my throat: I could speak, but it was never easy. It loosened its hold in me, but I could never escape it completely.

And yet. At one time, silence kept me safe. In some ways, it still does. It has been with me so long, I don’t know who I’d be without it.

It’s a part of me— for better or worse.

Milena is a third-year student at Northeastern University majoring in behavioral neuroscience. In her free time, she enjoys painting, reading, writing, and playing rugby.

I am 16 years old, desperately clinging on to the last few weeks of summer before my junior year of high school. The days are long and sticky with humidity, and I mostly spend them sequestered in my room, lulled into midday naps by the hum of air conditioning. In the past few years, I’ve sunk deep into the comforts of my room, only emerging to run and catch the bus each morning. There I am alone, and maybe that’s preferable to being with you.

I don’t go out with you and your friends anymore. Not to eat ice cream from the shop in town or sit in someone’s basement and drink. Each time you do see me you urge me to come out sometime. You say I would be less depressed if I did. I want so badly for you to be right. 

My phone lights up, and I flinch when I see your name. When I was younger (much younger), the sight might have been a welcome one, but not anymore. By this point I know what you are capable of. This night’s incident would not be the first, nor the last. 

You want to meet for dinner. I stare blankly at the time. It’s 10:00 pm. I ate hours ago, and I tell you so, but you just got off work and you’re hungry. I type out a resounding no thanks, see you when school starts, but I hesitate. Maybe you’re right. Maybe if I go out I’ll be happier. I’m so desperate to lessen the heavy weight that sits on my chest each day that it outweighs the trepidation I feel towards you. So I tell you I’m not hungry, but I’ll keep you company. You say we can go to the pizza place around the corner. 

I scurry out of my house, meeting you halfway up the street. I don’t want you coming to my house, even just to stand on the porch. Something about your presence on my doorstep would feel like a stain, a contamination. I don’t want my parents seeing you either. Irrationally, I worry they could look in your eyes and see what you’ve done. 

As we begin to walk you tell me you have no money. That strikes me as strange, seeing as you’re the one who wanted dinner. But I say nothing. My ability to question, to protest, has mysteriously evaporated. As we near the pizza place, I see the windows are dark, the chairs placed upside down on the tables. They’re closed, and they have been for a while. That seems odd, too, seeing as you must have walked by on your way to meet me. You barely even spare it a glance, walking straight past. You suggest we go to the park. My legs betray the dread that’s made a home in my body and I follow dutifully. That's what we’re supposed to do, right? Be compliant? But the tiny grains of unease prick at the nape of my neck, urging me to turn around. I suppose those were my instincts, which I excel at ignoring. So I agree, because that’s what I’m good at. 

Our town is dark and deserted, so I shouldn’t be surprised when the park is too. The sole inhabitant is a man crouched low on a bench, fumbling with a cigarette. He asks you for a light but you have none, so you apologize as we descend into the playground. I haven’t been here since I was a little kid. It’s different now. They’ve updated the equipment, the plastic slides bright and shiny, even in the darkness. You take off your apron and fold it neatly on a swing. You’ve been washing dishes all day. You start to tell me a story as I stand there, my feet shuffling in the wood chips. 

You were texting your friend at work all day talking about how horny you were. How all you wanted was a blowjob. He said he could hook you up with someone but you said no. I don’t know how I’m supposed to respond to this, but a cool girl wouldn’t bat an eye at this kind of talk, so I say nothing, the ghostly light of the street lamps illuminating your face. You keep peeking at me, gauging my expression. This feels like a test so I try to look as nonchalant as possible. I don’t think it works, and you look away again. Then you’re fumbling with your belt, and the metal of the buckle is like wind chimes but also fills me with dread. You apologize, that same genuinely sorry tone you used when you didn’t have a lighter for that man, but you just have to take a piss. I stare anywhere but at you as you piss against some poor tree. Then I go and sit at the top of the slide, wondering why you would do that. Now I know you wanted an excuse to take your dick out. 

You clamber up the slide to sit near me, our legs touching. I feel a sense of real revulsion. And then I see you didn’t put it away, and that image burns into my brain like hot metal on flesh. You’re still talking because that’s what you know how to do best, and the seal on my mouth breaks open, the words tumbling out like water: my dad wants me home i need to go home he’s texting me i have to leave i’m sorry—

But you’re calm, like you expected this resistance, and you insist that we have plenty of time. There’s enough time (for what?) before I have to leave. You lay across my lap, and my back reflexively presses against the bars until it’s painful. I’m a statue made of stone and you are the bird shit that covers it. You tell me to guide my hand towards it but I don’t want to and I don’t know how to and even if I wanted to say that I couldn’t anyway. A list of excuses tumbles out of my mouth and you deflect each one deftly like a star athlete. My heart is pounding so hard I feel like you must be able to hear it, you’re so close to me. I stare down at you, trying to focus on your face instead of everything else, and childishly, I wonder if you will kiss me. Not because I want you to, but because some part of me wants to be the object of someone’s boyhood crush. I wanted a single rose because a dozen was too expensive and cheap chocolates from the grocery store and a tacky heart shaped necklace from the mall. This is not how high school relationships are supposed to happen. I don’t even like you in that way, but you seem to want me and I wish someone would but not like this. 

I make a final plea, I need to leave, and you press your full body weight into my lap, murmuring, you can’t leave if I do this. Fruitlessly, I try to stand up, but your weight impedes me completely. I can’t get up, as much as I try, struggling with the effort. I resign myself to my fate, the task ahead of me that you’ve assigned, but I’m paralyzed. I stare back blankly as you look up at me, expectation clear in your eyes. Finally you sigh, annoyed, buckling your pants back up and standing. I scramble up, murmuring apologies (for what?) and jumping back down into the wood chips, my knees smarting in pain at the rough landing. You say you’ll walk me home because it’s late, which I find ironic, because who do I need to be protected from but you? 

Of course, I acquiesce, and we walk together, the silence heavy. My mind is blank. I just want to be alone again. Alone can be lonely but it doesn’t hurt me like you do. You pluck a leaf from a nearby plant, your fingers punching holes in its veiny surface like two eyes. As we reach my street you hand it to me wordlessly, telling me you’ll see me at school in a few weeks. You walk away, hands shoved deep in your pockets, and the fluorescent glow of the streetlamps makes the world look like a movie set at nighttime turned artificially into day.

I twist the leaf in my hands and walk the rest of the way home alone. My parents are sitting in the living room like always. I walk straight up the stairs silently, taking out my diary and sitting on my bed. I don’t remember what I wrote, but afterwards I took that leaf and pasted it into the pages. I wonder if it’s brown and crumbling now, or if the scotch tape has kept it intact, green and smooth, chlorophyll staining the pages and the tips of my fingers. 

Lily is a fourth-year student at Northeastern University studying Biology and English. Her writing has been published in Spectrum Literary Arts Magazine, Queen City Writers, and The Foundationalist. She hopes to pursue medical school after college and continue writing as much as she can.

By Charissa Rigano

Multiple Sclerosis (MS) is partly caused by genes you inherit from your parents, and partly by outside factors that may trigger the condition. Experts assert that MS is not directly inherited, but it is agreed that the condition is more likely in people who are related to someone who has it -- for example, the chance of a sibling or child of someone with MS also developing it is estimated by the National Health Service to be around 2 or 3 in 100. I am not sure what this really means…but here’s my story.

1995

Returned home from my honeymoon.

Loss of feeling in my right hand and arm.

Checked into George Washington Hospital being treated by a neurologist.

FAMILY HISTORY.

MRI.

Lumbar puncture.

Steroids. 

US Open tennis on TV.

I know what the doctors are going to say since my father Richard Rigano (1940-1992) died in a nursing home in Massachusetts from MS in 1992 before he ever met my now husband. 

I was Daddy’s little girl who had lived my life watching my father ravaged by this un-curable disease -- how do I handle the same diagnosis?

I chose to mostly ignore the MS diagnosis and continue to live my life.

Continued to see my neurologist every 6 months. Took ‘MS' medication when we could get the insurance company to cover the cost. Although these medications are FDA-approved, for all intents and purposes they are being tested on MS patients. I say this because nothing cures the disease, and each patient is so different (with symptoms and disease progression) that there is no one drug that has been shown to change the disease progression.

In retrospect, I am forever grateful to the doctors who encouraged me to try these medications as my health may have been dramatically different if I had resisted the pharmaceuticals. 

Life moves on.

2000

First child, a daughter born February.

2005

Adopted second daughter, born December 2003.

Busy raising children and loving my family.

2008

Completed sprint triathlon (0.5 mile swim, 20k bike, and 5k run) to celebrate my 40th birthday.

2018

Major life changes including: oldest daughter graduated from high school and left for college, and death of my chosen mother figure – the mother of my heart - by suicide. In hindsight, I realize that these stressful life changes including losing my best friend affected my health.  

Noticed issues walking, including left foot drop and inability to walk as far as I could in the past.

Tried many different things. Changed my diet including eliminating inflammatory foods (dairy and gluten). After many unsuccessful physical therapists (PT), I realized that patients with MS need a knowledgeable PT, and I found an amazing MS-specific PT.

I can no longer ignore my MS, as it is affecting my life. I must take action.

My neurologist spoke of my disease as ‘secondary progressive’ during my next appointment.  I looked him straight in the eye and said, “If you ever say that again I will walk out and never return.” A bit dramatic, but I am Sicilian, and visions of my father flooded my memory at the use of ‘progressive’ because SPMS (secondary progressive MS) is what my father had that caused him to end up in a nursing home begging us to end his life.  It is a type of MS that comes after relapsing remitting MS, and your disability gets worse and worse without periods of remission. When my doctor suggested that my disease was moving to SPMS, memories of my father and his final days paralyzed in the nursing home bed, begging us to end it all, came flooding back. 

After reconnecting with a friend from high school who also has MS, I learned about her experience with Hematopoietic Stem Cell Transplant (HSCT) which halted her MS. After doing my own research, I went to Puebla Mexico and had HSCT in December 2020. My friend from high school, let's call her Kristen, is a very kind person who always told me of the fond memories she had of my father.  Although we fell out of touch after touch after high school, I knew that she had MS.  For years I toyed with the idea of contacting her, but never did.  When my physical condition deteriorated, I finally got the guts to call her and she shared her journey with me.

2022

I remember what life with my chronically ill father was like, and how he spent his last days in a nursing home begging for us to end his life. This experience was neither good nor bad, just how life unfolded. It drives me to never stop loving and taking care of myself, even when I am exhausted.

I am now 19 months post-HSCT, and although I have lingering doubts at times about the effectiveness of the treatment and my health -- like when I caught Covid-19 after 2.5 years of avoiding it, and getting Lyme after a tick bite -- I remember that I am human and have to be cautious and patient when I get sick.  

Biggest findings from this time:

Recovery from HSCT is no joke.

I must manage my stress and my diet.

I have to keep my body moving (“if you don’t use it you’ll lose it”).

Living with a chronic illness includes being flexible.  

Be thankful for my friends.

I believe that I have halted the progression of MS, but I continue to live with pre-HSCT myelin damage. My current mission is believing that I can do whatever I put my mind to, and am not limited by doubts and chronic illness. How do I manage my chronic illness? By having a positive attitude, moving my body every day, and not letting fear win.  I am constantly working on getting over my fear of entering new situations, but hope that as I progress on my journey this will get more natural and easier.

Charissa Rigano is an engineer, educator, yoga devotee, health nut and woman living with a usually invisible chronic illness.  Her latest challenge is learning how to live with this chronic illness and the grief around losing the woman she used to be. She currently lives in Andover, Massachusetts with her husband and 2 dogs while her two daughters are spreading their wings at university and “the real world”. 

By Katy Morley

29 | AFTER

I closed my eyes, slumped against the wall in the dim light of Universal Music’s Santa Monica studio A. A familiar fatigue had oozed through me—sludging up my thoughts, burning my eyes, leadening my head—until I surrendered to the wooden floor. I inhaled deeply, following the cool, climate-controlled air into my lungs, and heard the music clarify, like a tuned radio. Pouring from the speakers was the recording we’d just made of my song, “Sleeping in My Own Bed” and I felt of a surge of joy. Scattered around the control room were the engineer, producer, drummer, bassist, pianist, and my manager. We were deciding our favorite take before recording the next song. “Yeah!” Stray, my producer, said with avid Aussie intonation, “that’s the one, no?” I coaxed my eyes open to look at him, grateful I could trust his ears when mine had become fuzzy. “Definitely.” I smiled back, hoping I had conveyed convincing enthusiasm. Because it was real. Today was one of the most joyous and meaningful days I’d had in my 29 years on earth—I was fulfilling my decade-long dream of recording an album. An album of songs that came from depths I didn’t know I had access to, with phenomenal musicians who loved and elevated the music. I was even singing into a hallowed microphone Frank Sinatra once used. But despite this elation, I could not overcome my body’s imperative to crumple and my mind succumbing to fog.

 11 | BEFORE

 We called it Polar Dog Day. June 6th was the official day when all three members of our nascent religion must enter the frigid, freshly melted waters of our hometown's namesake, White Bear Lake. My fellow pagans were neighborhood twins whom I’d convinced, to their Lutheran parent's chagrin, to form our nature-worshiping church. Aside from an annual icy baptism, devotional practice mostly consisted of hanging out and doing homework in trees. I spent long contented hours perched on the limb of a holy Ash, reading and thinking, shrouded by a cloak of green, then amber and crimson, then remembered leaves.

19 | BEFORE

 Alone in my university’s painting studio, I turned up the radio and walked back to my easel, singing along to the upstate New York golden oldies station. Once upon a time you dressed so fine, threw the bums a dime in your prime, didn’t you? Bob Dylan, a fellow Minnesotan, whose music would radically alter my vision of myself, eventually inspiring me to abandon academia to sing and write songs. It was past midnight on a Friday and I could hear the drunken shouts and laughter of students on their way to parties and bars. I would join them dancing later, but I didn’t drink. I abstained initially as a response to my father going to rehab at an age when my peers were just starting to sneak alcohol, but had since learned to relish lucidity. My few experiences drinking had taught me I was particularly sensitive to hangovers; I lamented how they left me physically drained and mentally muddled, swallowing precious days of my life. It was both an awareness of my mortality, but also a profound enthrallment with the mystery of human consciousness that made me feel wasteful dulling it down. Since coming to college I’d voraciously studied consciousness, taking neuroscience and existentialism classes, biology, acting, and Buddhism classes, devouring all angles into the enigmatic phenomenon, elated by my brain's growing power to cross-pollinate different fields of knowledge, to discover and articulate new ideas. Tonight though, buzzing from a victorious game with my intramural hockey team, Natty Ice, I enjoyed a less cerebral experience of consciousness, blissfully smearing colors onto a canvas.

 21 | ONSET

 Plastered to my sweaty sheets I willed myself to hobble to the bathroom to pee. I reached to flush and noticed the porcelain bowl full of dark brown liquid. I looked in the mirror and saw my neck swollen like a linebacker’s. My natural response was to push through illness–growing up I would pretend not to be sick so I wouldn’t have to miss school and fall behind in class–but my then boyfriend convinced me to see the school physician.

Strep throat and mononucleosis. I called my parents to say I wouldn’t make it home for Thanksgiving. “Do you think you should take the semester off?” my mother asked. “I don’t know,” I said, “there are only a few weeks left.” I had worked tirelessly through demanding senior year courses to maintain a near perfect GPA and I dreaded retaking them all. The same anxiety about falling behind when I was sick as a girl, about keeping impeccable grades, gripped me.

 When classes resumed after Thanksgiving break, I shakily dressed myself and trudged to the art building. I was late. As Professor Knecht lectured, I leaned against the wall in the back, heaving breaths and feeling I might pass out. After class I asked my professor if I could have an extension on our midyear project. I explained my illness, that I was just so exhausted. “You’re not that sick,” he said. His wife was currently undergoing treatment for breast cancer and he had no patience for my fluffy sleepy disease. I heard for the first time, a refrain I’d hear throughout the next decade: “everyone’s tired.”

22 - 24 | AFTER

Year one. A year after I was expected to recover from mono, Dr. Anderson met my concern of persistent exhaustion with, “kids your age don’t sleep enough.” I felt dismissed, but was too uncertain in myself to push back. If she didn’t take it seriously, I thought it must not be an issue and would go away.

 Year two. Dr. Anderson referred me to a sleep clinic where I filled out a questionnaire and was diagnosed with insomnia. I learned about sleep hygiene, that I should never nap, and that ‘sleepy’ meant ‘prone to falling asleep,’ that I was technically ‘fatigued.’ I knew insomnia wasn’t the issue. My poor sleep was intermittent, and the exhaustion persisted even when I consistently slept 8-10 hours a night. But at 23 years old, and feeling less and less like myself, I didn’t know how to contest the certainty of the medical authority I’d trusted since childhood.

Year three. “You say it’s been years?” Dr. Anderson asked, and agreed to run some blood tests. Everything checked out fine except for low vitamin D levels, a common issue for Minnesotans. But most startling to me, was a short line in her report that I only read years later, sleuthing through the medical records I’d requested she send to my new doctor when I moved to California: “Patient does not appear tired.” 

Patient does not appear tired. My doctor, who had worked with me from the age of 16, who was my mother’s doctor, who knew me as the girl who played reverse hooky, had decided to note that my subjective account of crippling fatigue was contradicted by my objective appearance. I was in her eyes–and the eyes of many doctors to come–a girl who saw phantom ailments. And I was slowly joining that world of ghosts.

28 | AFTER

 I clutched the steering wheel, terrified sobs mounting into rhythmic hyperventilation. First big tour. First panic attack. I had only played two shows of my three-week run supporting the British singer, Låpsley, and in my weakened state I found the physical toll unbearable: waking up early, packing the car with heavy musical instruments and electronic gear, driving to a new city, finding food that didn’t make me sick, unpacking gear into the venue, assembling and soundchecking a complex stage set up under tight time pressure, performing through painful exhaustion, disassembling the stage set up, repacking the car, finding food that didn’t make me sick, driving to the hotel, unpacking the car, crashing late into bed, wired and nervous before waking up early and doing it all again. On stage, I was near collapse and so murky I couldn’t trust myself to play the right notes. I’d devoted my life to music because singing made me feel the most alive and most myself. It was the feeling of telling the truth, that I couldn’t be questioned. But at these shows I felt like a fraud. I was fumbling through the motions on the fumes of sheer anxious energy, and alone, in the car, the relentless strain overtook me.

26 - 29 | AFTER

The following is a list of specialty diagnoses and treatments I received throughout my late 20’s: 

 Stomach ulcers – omeprazole. Asthma – a steroid inhaler, which corroded my throat and interfered with my ability to sing. Leaky gut syndrome – no gluten, dairy, refined grains or sugar. Allergies – no more morning walks through pollen-filled Temescal Canyon. Chronic fatigue – endless supplements and tinctures. Unbalanced energy – $400 tea brewed by a Chinese herbalist. Most of all, depression – “have you considered antidepressants?”

30 | AFTER

Mother visits. Something is wrong. 

 Staying with me for a few days in Los Angeles, my mom was shocked by my limited life. I slept for 10 - 12 hours a night and needed to lie down again by early afternoon. My diet was so restricted I could eat few meals outside of my kitchen. I felt a constant burning in my stomach, joints, and eyes. I’d stopped running and playing hockey as I’d be bedbound for days after. I’d hit so many medical dead-ends and was so drained I had mostly given up, but she, with the determination of a parent with an ailing child, got to work.

Lyme disease. A diagnosis. The relief of a label, a common language to dissolve the isolation of being belittled and misunderstood. But most of all, the relief of being able to trust myself again. How can someone regrow their energy, their very life force, when they’re taught they can’t be trusted? The doubt I’d internalized after years of dismissal by the healthcare establishment had me waging a war against my own deteriorating body. A diagnosis meant permission to rest, to take my illness seriously. I had just released the first single of the album I was recording, but I decided to put everything on hold. “Give it a year,” said Dr. Sugden, my new Lyme specialist, with hope.

31 - 32 | AFTER

Eight months taking heaving antibiotics, with no improvement and worsening stomach pain, I stopped. I was put on other aggressive medications, including Malarone, a drug for malaria. Every few months my mother flew out to California and drove us 7 hours to the Bay Area specialty Lyme clinic, exchanging thousands of dollars for me to be believed and try experimental protocols. At one point I was sent a bag of syringes and vials of taurine and magnesium chloride with instructions to inject myself in the stomach twice a day. When I asked how, I was referred to a youtube tutorial about self-administered shots. 

I left California and had back to back arthroscopic hip surgeries in Minnesota, recovering at my mother’s house. Dr. Foley, who ran a nearby integrative medicine practice, prescribed me disulfiram, which new anecdotal evidence was suggesting could benefit chronic Lyme patients. The pharmacist explained that I could not drink alcohol while taking it or I would become severely ill. “You can’t even use hand sanitizer, it will absorb it through your skin.” I thought, “when do I ever use hand sanitizer?” It was February 2020.

33 | AFTER

Alina. My angel of reason. My Eastern European functional medicine doctor and nutritionist, recommended by a friend’s stepmother. She explained the caustic impact of summoning anxious energy when my natural energy waned: “You cannot recover if you’re in a state of constant stress. It is corrosive to your body, and the fight or flight response overruns other functions, including healing and repair.” She said the tests confirmed I had Lyme disease and coinfections, but that Epstein Barr virus, the cause of my collegiate mononucleosis, appeared exceedingly active. She explained my low T cell count, my low protein markers, and her theory that my compromised stomach lining was disrupting my body’s protein absorption. “You are young and healthy, we need to figure out why your body isn’t healing itself.” I had tried extreme medications and was ready for a gentler approach. I’d regained enough trust in myself to intuit that’s how I needed to heal. I recommitted to the Buddhist meditation classes I’d taken in my early 20's explorations of consciousness. They helped calm my nervous system and gradually recover some of the alert lucidity I’d once taken for granted. Before.

A year after COVID-19 ravaged the world, healthcare workers and their patients experienced post-viral fatigue en masse, motivating new research and pushing the previously disparaged condition into prominent cultural conversations; The CDC finally acknowledged Post Treatment Lyme Disease; And I released my album.

35 | NOW

 My skin prickles as I lower into the chilled water of Hampstead Heath’s ladies pond. My body protests against the cold but I push off. I know that after a few strokes my muscles and joints, sore from my recent tour, will welcome the swim. When I moved to London, I chose a place near the Heath because I craved its forests, but had since discovered a love of its swimming ponds. Enticed in by the supposed immune benefits of cold water exposure, I soon remembered the aliveness I felt in the freezing lake dips of my youth. As I glide through the dark water, I am weary but sturdy. I designed my tour so it would allow me to do what I love most: sing. I stripped back my complex band setup to perform simply with a pianist. The nakedness of such a minimal arrangement, with no other instruments to hide behind, put my voice and songs through a trial by fire; I found they were enough. Stripping back also meant traveling light. Rather than driving a car full of equipment, we rode trains with a backpack and keyboard. I had come home from playing shows tired, but I had also tapped a deeper well of energy. The potent energy of purpose, of living, of sharing my heartbreaks and joys in an alchemical act with others who’ve felt and feel the same. I’d returned, too, with newfound strength–not physical, I knew if I swam too fast or more than two laps I’d still be depleted–but that unshakeable, unquestionable strength of telling the truth. I pass a duck settled on an algae-covered buoy. I am calm and slow, hardly disturbing the water, and she stares back, unruffled. At the next, unoccupied buoy, I stop to rest. I think of my former life skating sprints around ice rinks, of running for uninterrupted miles, and feel a familiar pang of grief, but it is overcome by a greater gratitude for where I am: floating, post-tour, shrouded by a thick canopy of leaves.

Later, I meet a friend for a stroll through the woods. We pass an old tree with branches enticingly just out of reach. Taking the challenge, we ascend. How many evenings had I collapsed early into bed, exhausted and aching, mourning a life unlived? But tonight, nestled on the limb of a holy Oak, watching the light fade from London’s late summer sunset, I am still awake.

Katy Morley is a singer-songwriter and painter from Minnesota, currently living in London. You can view her art at www.csmrly.com and her music at www.morlymorly.com. Katy bravely shared her story in a live virtual Healing Story Session during our annual event in February 2023. You can view a recording of that event here.

By Els Messelis

My eyes don’t line up with one another and that will be for the rest of my life. I have tried to live a full life but realize that I have to live an ‘SOC’ life based on Selection, Optimalization and Compensation. The SOC model was first introduced by Paul and Margaret Baltes as a psychological model of successful aging applicable to a variety of functional domains like cognition, emotion, and motivation (Freund, 2008). This model builds on the belief that across the lifespan, people face certain opportunities (e.g., education) and limitations (e.g., illness) that can be successfully navigated by an orchestration of three components: selection, optimization, and compensation.

Life story of my eyes, seen through my eyes

When I take off my glasses, you can tell I have crossed eyes. But my loved ones have never insisted on extra eye operations, although all the previous ones failed. When I was three years old, I was diagnosed with Strabismus (crossed eyes). A predisposition and the context influenced it: all of my other illnesses made my eye problems come to light.  In the beginning, I never realized what impact this diagnosis would have on my life. 54 years later - I am 58 now - I realize more than ever that I cannot run away from my eye problems any longer because they have become more and more a part of my life and my aging process.

Dr. Annie Brewster, founder of Health Story Collaborative, might not be aware of the fact that she opened my eyes with her health story in March 2022 during the International Congress on ‘The Healing Power of Storytelling’. But she did. The mask came off, even though I had been working for years with life stories of my (older) clients.

As a gerontologist and author, I lecture, read, and write all day long. I like to share this passion and I love to let my clients, students, patients grow. This gives me flow, energy, and happiness. This means that I use my eyes all the time for reading and writing. I do not give them the rest they need so much.

A difficult memory

Some of the experiences I have had throughout my life with my eye problems have been dehumanizing. Up until I was ten years old, I received several treatments: glasses, patching, eye exercises and 4 surgeries. Eyes are complex. Why do I have crossed eyes? Why could eye specialists not fix my problems? So many questions have never been answered.

The optic nerve is a bundle of more than 1 million nerve fibers. It transmits sensory information for vision in the form of electrical impulses from the eye to the brain. I have never known for sure if I have optic nerve damage. I also wonder, do I have optic neuropathy? This is a catch-all term that refers to damage inflicted on the optic nerve. I think this is sometimes the case.

When I was five years old, both of my eyes received surgery. The loneliness I felt when I awoke was hard to carry because I couldn’t see anything. But I did receive a doll who was as tall as me. What happiness I felt when I recovered from the surgery! It still puts a smile on my face.

Another dehumanizing moment happened when I was told at ten years old that I would never be able to earn a proper degree at school: “You will have to live with it, you will never be able to go to University. Your eyes cannot cope with long reading and long writing…” I was perplexed and from then on I had plans to overcome this!

Around that time, I was also ashamed because my eyes were covered and I wore glasses which were too thick to look nice. I looked like I had Goblet glasses.

 When I was 18, I planned to earn a bachelor’s degree in social work, which I did. After that, I became a teacher with no particular problems. The eye problems resumed when I was in my early 30’s. While I was studying Medical Social Sciences and afterwards Gerontology, I had to study for examinations and had just finished my Master Thesis when I began having severe eye problems. A neurologist advised me not to read and write for a month! I had to hold complete rest. I was shocked and astonished. This felt dehumanizing because I wanted to finish my master’s degree on time with good results. Luckily, I had started early to prepare for examinations. I ended up Cum Laude, with distinction. But I was broken. I had to rest for weeks before I could properly read and write.

The same happened again several years later. I had been an academic researcher at the Free University of Brussels. I had finished my PhD. In my ‘little jury,’ I received the advice to review my PhD, but I never did. The combination of my eye problems (one eyeball was gone), a divorce, and the fact my mother-in-law passed away, my energy and motivation were gone.

“Your PhD is too good to throw away, but it needs an in-depth review.”

I had plans to do so, but in December 2006 I met my new partner who had four children; I became Doctor of the Dirty Laundry. My dream to become a PhD in Gerontology was over. It took me more than two years to recover from this, as I always had believed if you start something, you should finish it to the end with good results. I did not take time to fully recover, but started writing articles and books as author or as co-author.

In the summer of  2022, and for the first time since 2006, I have received severe eye problems again. For years I have been working on big computer screens. But all the online lessons and meetings were a disadvantage for my eyes. I could not read the shared documents well. Sometimes I am working 10-12 hours at my PC in combination with social media on my iPhone and my eyes cannot do this much longer. Long reading and long writing is a problem for me, but there are so many books that have to be read and so many other books and articles that have to be written.

Alternative stories: the art to survive

In my narrative work as Gerontologist, I collect lifestories on ‘skinhunger’ and ‘loneliness’. I have come across old and young people who have opened their hearts on very emotional themes, often hidden stories.

I want to share my hidden story. I have always believed that stories have the power to transform individuals as well as the health care system. After being in contact with the Health Story Collaborative, and reading the book The Healing Power of Storytelling, I am more and more convinced.

Lessons learned

Sharing my story can be interesting for me but also for others. Stressing the positive aspects in life and integrating the negative ones by looking for new pathways: it is liberating. Art-therapy, creative writing and using other materials have helped me in supporting my clients. I realize that I also can help me forward. I have started classes on creative writing and I will take an educational course on art-therapy.

It can help me process what comes next, to create new pathways to thrive and even reclaim my personal power amid uncertainty, fear and change. I realize more than ever that I am 57 and that I will come more and more in contact with “normal” eye problems for my age, such as accommodation problems, above my other eye problems. My heart longs to read and write for days, but my eyes often say, “I cannot participate.” I have to listen to my body and make new pathways on my healing journey.

As mentioned in the book of Dr. Brewster, there can be some things realized in the healing power of storytelling. She mentions important aspects such as:

• Process the difficult emotion that come with life-changing diagnosis.

• Move beyond being the hero of your own story to become the author of your own story

• Craft your narrative and share it in whatever medium speaks to you: art, writing, music, audio

• Integrate a traumatic health event into a new and ending identity

• Use applied storytelling techniques to strengthen connections between you and your loved ones

• Cultivate resilience to move forward amid uncertainty and fear

Let us share hidden stories and learn from each other. So we can connect in solidarity, and live in a warm society. This is what we all want, no?

Due to my glasses, most of the time, it looks there is nothing wrong with me, but there is…sometimes in a very severe and bad way. I am so passionate about my work – which is in a huge amount writing and reading – that the spot is always on. Sometimes, my eyes say: “I don’t want to cooperate any longer.”

Life can be compared with roses. Life is often beautiful but we have to cope with the thorns. Integrating them is the way to go but not always easy.

My new goals in life based on the SOC model:

Els Messelis has a Masters in Gerontology and is  coauthor of 13 books on older age. 

Her expertise includes sexuality, intimacy & skin hunger in later life; elder abuse; preparation retirement; and life stories.

Learn more about her here: elsmesselis.com 

On February 4th we held our inaugural annual event, “Making the Invisible Visible”, during which we shed light on the experiences of individuals navigating “invisible” chronic illnesses which are poorly understood, challenging to diagnose, and often dismissed by the healthcare establishment. Listen to our conversation with Meghan O’Rourke, author of The Invisible Kingdom: Reimagining Chronic Illness, during which we discussed the concepts of narrative identity and how Meghan's own experience sharing her story has changed how she experiences her illness today. Experience the power of storytelling as you listen to Katy Morley and Lili Fox-Lim, two courageous storytellers, who shared the challenges and insights they've encountered on their journeys through illness and healing.

By Rita Thompson

Three redheads in a square box on wheels travel into the city with a siren announcing their urgency. I’m the one strapped to a gurney in the back of the ambulance.

Back at the local hospital where we were initially introduced, I thought I was seeing double until my mother confirmed they were in fact two separate people, identical twins. She smiled at the men with tangerine-colored hair and told me she and my father would meet me at the next hospital I’m being transferred to.

I’d never had an Uber ride with two drivers before, so I wondered if this was the hospital’s version of luxury. If so, how many drivers would Stephen Colbert get?

As we cruise down the highway, I hear the twin with more finely tufted hair call back to me.

Do you want us to turn on the radio? Any station you want.

I bet the twins listen to the same type of music my brother does. Bands called Garage Sale and Not Your Neighbor’s Grandmother, or something like that.

I scan my mind for what radio station would best suit the mood of a hospital transfer. I don’t have the energy for hip-hop or the emotional bandwidth for classical. I might consider oldies, but I didn’t anticipate this emergency so I don’t have the number of that station memorized.

No, thanks.

My awareness comes back to the straps holding me down on the gurney. Are they supposed to be like a seat belt?

I realize how strange it is to be facing backwards in a vehicle. Is it more safe for me to be facing this direction if we get in a crash, or is it just more convenient for the twins to take me in and out of the ambulance this way?

Maybe if we got in a head-on collision I'm less likely to be slingshotted out the windshield this way. If the twins were slingshotted out of the ambulance, I'd have to David Blaine my way out of these straps holding me in place.

I’d been steadily losing my ability to stand up without debilitating dizziness for the last year, and then earlier tonight at my birthday dinner half of my face went numb. I could panic, but I’m clinging to the emotional steadiness of my sanity. I know with my body in this questionable condition, my biggest asset is my mind.

After the twins finish their pleasantries with me, they commiserate about the Bruins’ disappointing performance this season. I’m taken aback by their hard pivot to a barbarian sport, but this jaunt is probably mundane for them.

Hayes is better because he is a local guy.

Canadians have better training.

No one has what it takes more than a Dorchester guy.

I wiggle my face to see if I’ve gained feeling in it. I haven’t.

I try not to give into the cascade of fear I'm experiencing when I could be educating myself. I know nothing about professional hockey, and I don’t want this ride to be a waste of time.

Hayes is from Dorchester, I etch into my mind. Maybe I'll be more useful at trivia nights after this trip. I've always been particularly uninterested in trivia, but consistently willing to attend for the appetizers and ambiance.

The twin's banter turns to white noise as I wonder if my parents will find me since this circumstance is new to all of us. I don't have my phone with me, or my pants for that matter, so they will have to navigate the maze of emergency rooms in the Boston medical playground. With five massive hospitals in the same vicinity, I hope they remember I'm in the Beth Israel system and not the Brigham system.

My attention comes back to the foggy rays of light shining from cars passing by. They remind me of my childhood and riding in the back of my mother's cherry red volkswagen.

It was a treat to get the back seat when my older siblings didn't call dibs, especially with a plastic baggie of dry cheerios to munch on. I remember thinking it was so grown up of me to sit that far away from my mother in the car. I established the distance by pretending not to hear her when she asked me how it was going back there. When I was 5 years old, this view I see now was a privilege.

While I'm not exactly itching to be closer to the twins, I want greater proximity to my mother and the opportunity to tell her how I am doing.

The headlights of other cars passing by are implicit of the darkness inside my chariot. What else has happened in this ambulance? Have the twins needed to save someone's life in here? Were they successful?

Panic rabbit hole.

I snap my mind back into focus to stave off fearful tears.

My therapist once told me that her actress-turned-rabbi sister claimed singing is a good way to interrupt a brewing panic attack. It’s unclear to me how judgy the twins are, but I’m not in the position to be choosy about coping mechanisms.

I allow one my favorite vocally skilled divas to become my muse.

Carrie Underwood.

Her chorus starts as a hum and turns into a breathy voiced melody. My voice gets bigger and I soak in the paradox of feeling so alive in an unrecognizably fragile body trapped in a mobile chamber.

Are you sure you don’t want us to turn on the radio?

I decline. I need to feel music more than I need to hear it.

It would be cool if the cars passing by could hear my voice instead of the siren. I want to be as loud as one of those vans that drives around Manhattan asking the public if they love Jesus.

I guess that's one worse place I could be right now. At least I'm not strapped to a gurney in the back of a Jesus van.

One of the twins calls back to me that we are nearing the new hospital. My lullabying voice fades away to the loud silence of what comes next.

Rita Thompson is a Mayo Clinic and National Board-certified Health and Wellness coach who supports clients with chronic illness in building quality of life. She is also a writer and advocate for the chronic illness community.

Segment 12  in our series Soul Chronicles for the Chronically Ill

by Shaler McClure Wright

Health Story Collaborative · Soul Chronicles: Changing The Way We Walk In The World

You’re listening to episode twelve of Soul Chronicles, offering a soulful perspective on how to navigate the unique challenges of living with ongoing health conditions. Special thanks to Health Story Collaborative for hosting this audio column. My name is Shaler McClure Wright and I live with Chronic Inflammatory Response Syndrome.

Story - “Changing the Way We Walk in the World”

Today I’d like to talk about the joy of walking. Putting one foot in front of the other. As in taking a stroll, jaunt, or constitutional. Walking is such a pleasant way to bookend a day. Yet in spite of the pleasure, sometimes we complain when we have to walk too far, or even worse, we may take for granted our ability to do so at all. And in my experience, once I start taking something for granted, it no longer gives me as much pleasure. Or perhaps I’d be more accurate to say I grow numb to the pleasure. And once numb, it can take a shock—like the loss of it—to remind me of how good I once felt.

I’ve lost my ability to take a walk at two different times in my life. My first loss lasted almost a year, and the second spanned about seven weeks. Don't get me wrong, I could still get from point A to point B, but not without difficulty. The difference between the two lay in the difficulties of trying to walk with illness v.s. injury. And to highlight those differences, I’d like to tell you the story of how each episode affected me and offered me a unique lesson in how I see myself in relation to the world.

One of my favorite habits is taking a daily walk to the sea. I live about a mile and a half from the ocean, and seven years ago, when I was in the throes of benzo withdrawal, that mile and a half felt like an impossibly long distance—because the path to the sea is rocky, with steep hills, and I was in pain. But I kept trying, even though I didn’t get very far.

One hot and humid day in August, I was sweating so much my glasses were foggy. Swarms of no-see-um gnats were buzzing even louder than the ringing in my ears, and thanks to a lingering sense of vertigo, my world was spinning with every step.

The hilly terrain made my heart race, and on that day, when the pounding got too intense, I stopped to rest at a stream. I seated myself on a smooth, warm rock rising above the surface of the water, and soaked my bare feet and ankles in its shade downstream. I was grateful for the moment of relief, but also discouraged. I could go no further. And while I sat, poised on my ‘thinking stone’, I felt my focus shift quietly to listening.

The simple act of listening to running water reminded me that there is a flow to life, and we fare better when we try not to resist the current. But on that day I felt like I was tethered to stillness, and the best I could do was watch life flow by.

I never made it to the ocean that day, and wondered if I ever would. Then, while still seated, I became aware of the warm sunlight inviting me to look up at the bright, cloud-painted sky, while my toes dug deep into the soft sediment of decomposing leaves, inviting me to enjoy the cool calm of the earth. And even though I was in a weakened physical state, I drew strength from feeling grounded, centered, and lifted by the beauty of the natural world. Because I was living with pain that was not visible to others, it was easy to feel overlooked. So being with nature was a welcome source of solace. I learned that day that even when my illness required absolute stillness, I could still be actively engaged with nature.

A few days later, when I was feeling a bit better, I stopped along my path to the sea once again—this time to watch an adult Blue Heron take off from an inlet in the marsh. But instead of flying in a straight line from the inlet to the ocean, he took time to circle his little cove, not once, but three times—just as the Blue Angels might’ve flown in a formation of honor. I wonder if he was paying tribute to the thick beds of sea grass that had given him shelter and kept him safe? Right then I made a promise to myself to honor the beauty of my surroundings in the same way— by taking time, and consciously acknowledging its existence.

The ocean continued to wait for my arrival, and as my physical discomforts subsided, the hills became easier to climb. And as weeks became months and months became a year, I continued to take each uphill step with growing confidence and vigor. I remember the first time I made it to the top of the biggest hill—the last one, leading directly down to the sea—I could hear the waves rolling into shore before I could see them, and I could taste the salt on my face before I could smell it. And from that vantage point of height, I claimed victory; the ocean was even more compelling than I had remembered. I like to believe she felt my return; that my presence mattered.

Looking back now, I can see that my daily walk served not only as exercise to increase my stamina, but also as a reminder that I am an integral part of the natural world. To illustrate what that sense of oneness might feel like, let me return to the words one of my favorite poets, Rainer Maria Rilke, in “A Walk”, translated by Robert Bly:

“My eyes already touch the sunny hill.

going far beyond the road I have begun,

So we are grasped by what we cannot grasp;

it has an inner light, even from a distance-

and changes us, even if we do not reach it,

into something else, which, hardly sensing it,

we already are; a gesture waves us on

answering our own wave…

but what we feel is the wind in our faces.”

To have felt the inner light of the natural world is to have felt a soulful connection. And to have been changed by it, even without understanding it, is a soulful act. Because of my walks during that time of impairment, I learned to recognize my relationship with nature as unconditional. It was as if Mother Nature could sense my invisible pain and instead of retreating, or avoiding, she welcomed me.

Now let’s look at  the second time I I lost my ability to walk freely…

Once I was able to resume my daily walk to the sea, and for the next seven years, I continued to grow stronger. I still had another chronic health condition, but it didn’t limit my mobility in the same way benzo withdrawal had. But I also began to take walking for granted again. Yep, I guess I’m one of those people who needs to be taught a lesson more than once before it sinks in. And just last October, I was offered that chance.

I traveled to Cannon Beach, Oregon with a dual purpose—one, to spend quality time with my brother; and two, to escape my newly empty nest back home. My only child had just started college in September, and I needed to rediscover myself as someone other than his mom. Since walking had always been therapeutic for me, a trip to Cannon Beach sounded ideal. The Oregon coast is so dramatic, it seemed like a perfect place for soulful reflection. Indeed, with a sky darkened by flocks of pelicans, and the towering landmark Haystack Rock—dotted with nesting puffins and reeking of fresh guano—I felt I had stepped into a world where nature was more dominant than humans.

I was walking barefoot on the cool, firm sand with my brother and his two large dogs, when I failed to notice the Great Pyrenees stopped abruptly right in front of me. Instead I had been looking up, admiring the looming presence of Haystack, and in my moment of distraction, stubbed my foot against his motionless hind leg. After making sure I hadn’t hurt him, I noticed my baby toe was sticking out at a strange angle and felt a warm pain spreading across the top of my left foot. Soon it turned eggplant-purple. Turned out I had fractured a toe and metatarsal, and I was surprised by how much that encumbered me. Those tiny broken bones meant that once again, I would temporarily lose my ability to walk with ease. This time, not due to an invisible illness, but due to a visible physical injury that included a cumbersome orthopedic boot.

I never could’ve anticipated that due to this injury, my journey’s purpose of rediscovering myself would now be weighted down by a clunky, white stormtrooper boot—limiting my movement to a slow shuffle, along with a limp and an aching lower back. That boot became the center of my world and literally changed the way I walked in it. Because of the boot, I had to walk slowly and move with care. It was a visible impediment and caused me to stand out. You might even say that boot became a symbol of my physical limitation around which others could gather. Because that’s exactly what happened.

For the first time in my life, the pain and discomfort I was experiencing was easy to see. Friends and family could relate, and went out of their way to be helpful, show their concern and offer sympathy. I felt seen, and appreciative of their support. And then, to my surprise, I began to feel a resentment growing inside me. Resentment for years of loneliness while living with ongoing episodes of yet another invisible illness; one that until recently, I hadn’t even been able to name. It was an ugly feeling—resentment—but since it had reared its head, I decided to pay attention.

And when I did, I came to realize that I had played a part in my loneliness too. I had not made enough effort to help others understand how I felt. I had not invited them to cross the threshold to my invisible world. And just as I hadn’t realized how much walking meant to me until I couldn’t walk, so too I hadn’t realized how much feeling seen by others meant to me. In fact, I hadn’t even recognized that I felt unseen, until I felt its return.

My son had always been more aware of my ongoing health challenges than others because he and I spent the most time together. Now that he had gone off to college, I became aware of how much health information I had held back from others. And I wondered, “How can I feel such resentment when I’ve made no effort to be honest about my pain?” And then, looking down at my clunky white boot for the hundredth time that day, I realized I wanted to learn how to share my feelings more honestly, especially my feelings about living with illness.

Then, with the boot symbolically keeping my attention focused on my feet, I suddenly had a kicker of an insight: After I’d kicked myself out of my empty nest, and then accidentally kicked the hind leg of a giant dog, I was left to find out the most important kick of all would be the kick I needed to give myself in the proverbial ass.  I discovered I needed to be more open with others if I wanted to feel more visible to others.

It’s safe to say that if I hadn’t lost my son as a live-in confidant, or if I’d been without the inconvenience and limitations of visible injury, it would not have been possible for me to recognize that my perception of being invisibly ill was at least partially of my own making. In addition to learning I never wanted to take walking for granted again, I also learned that I need to be my own best advocate. Any one of us can change the way we walk in the world. And when we do, it can change the way others perceive us. But it’s up to us to make ourselves visible and muster the courage to make that choice.

I’d like to leave you with one final image that just came to me today, while once again walking my daily path to the sea.  I was taking a break from writing this chronicle and stopped at my special stream. And as is often the case, the water was patiently holding a message for me: There were five little bubbles circling around a shallow pool on the water’s edge, but none of them was big enough to break free from the swirling centrifugal force of the pool and return to the flowing stream. It wasn’t until they merged together, until five bubbles became one, that they gathered enough energy to move forward again. When the bubbles were separate, they were stuck. When they came together, they could move again. Such is the power of opening ourselves to others.

For those of you living with pain that is hard to see, I hope this story leaves you feeling less alone. Becoming more visible is a process, and it’s not always easy. But perhaps that’s to remind us—not to take it for granted.

Go here for more episodes of our Soul Chronicles series.

Shaler McClure Wright is fascinated with the mysteries of creative process, the healing power of creativity, and the creative synthesis of method acting, intuitive learning and depth psychology. A graduate of Wesleyan University and The Actors Studio, Shaler has worked as an actor, writer and educator for more than 40 years, and lives in southeastern Connecticut with her husband and son.

Website: www.shalermcclurewright.com

Instagram: https://www.instagram.com/soulchronicles22/

@soulchronicles22

BioSite: https://bio.site/soulchronicles

By Brian Crouth

My memories 

of boyhood and early teens 

growing up 

in the 1960’s 

and early 70’s 

are happy ones.

Blessed with loving parents, 

I am the eldest of seven.

Though a household 

with so many kids 

was a handful at times, 

my parents loved

having seven children, 

and as siblings 

we cherished the moments 

we shared as one big family.

Saturday nights were 

particularly special: 

a weekly ritual 

kicking off 

with we kids 

elbow deep 

in flour and dough 

for

 “make your own pizza” night 

followed by 

all of us gathering 

around the TV 

for the CBS lineup of 

Mary Tyler Moore, 

Bob Newhart & 

the Carol Burnett show

with paper cups 

filled with root beer 

and Bachman pretzel rods 

for pretend cigars.

II

One of the high points 

as a family 

were our summer vacations with

Aunt Mary Jo and Uncle Phil

and our younger cousins.

In preparation, 

my mom and aunt would 

design a menu of entrees 

they’d cook in advance and freeze.

We’d bring ours in a big cooler 

wedged between suitcases

with the nine of us 

in a station wagon

setting off on a 6-8 hour journey

to Cape Cod our first two summers

and later Rehoboth Beach in Delaware.

After long days 

at the beach

marked by 

tummy surfing 

on Boogie Boards, 

picnic lunches, and sunburns,

I couldn’t wait to run back

to our rented cottage 

to relish the meal 

to be unveiled that night.

All the pre-planning and love

that went into the main course -

followed by such 

exotic desserts as 

freshly baked Congo Bars 

and crepe night -

only added to their deliciousness.

The joy and chatter 

around the dinner table

spending time

with our 

favorite relatives 

we didn’t often get

a chance to see

made it extra special.

But the crown jewel for me 

was the night handpicked 

by our parents

when after dinner 

we’d get to stroll along 

the Boardwalk -

taking in 

all of

the colorful sights, 

and music, 

and aromas

with our elders trailing behind.

Every summer 

on Boardwalk night 

I was a teenager on a mission,

perusing the open air storefronts 

in search of that perfect decal 

to be ironed on and create 

my own personalized T-shirt.

II

One summer 

around the age of 16, 

I remember sitting 

on my beach towel 

next to the sandy spot

that Aunt Mary Jo staked out 

with an umbrella and picnic blanket.

As my cousins 

ran joyfully in & out of the surf

my own joy and enthusiasm 

I had felt in summers past 

wasn’t there.

Rather than sadness, 

it was as if I felt nothing.

I could not understand 

what was happening to me, 

or think of any reason why.

This same 

emotional blankness 

followed me 

to the other 

vacation 

highlights

I could always

count on 

for joy and pleasure.

But nothing

could awaken me 

from this 

emotional deadening:

not the laughter and cheer 

around the dinner table,

not the Congo bars,

not even the Boardwalk.

The harder that I -

or my parents 

and aunt and uncle -

tried to shake me 

from this state

without success, 

the more confused 

and discouraged I felt.

The best conclusion 

any of us could come up with

was that I was experiencing 

the fickleness of adolescence.

In actuality, 

there was a name for this 

emotional numbness and 

inability to experience pleasure -

Anhedonia -

a core characteristic 

of depression 

and potent enough 

to dull the delicious taste 

of Congo Bars

and rob me of 

my anticipation and joy

of Boardwalk night.

This would not

 be the last time 

I would experience depression.

With each episode, however, 

I soon discovered that 

a way through and out 

of the darkness 

was by writing Poetry.

III

Though my 

clearest memory 

of experiencing depression 

wasn’t until I was 16 

I began writing Poetry

at a much earlier age.

Even then,

my first Poems

foreshadow 

someone with 

a keen sense of 

sorrow and loss.

One of my very first:

“Where Have All My Children Gone.”

was written at 

the tender age of 12.

The Poem imagines 

what my mother 

might be feeling 

after the seven of us 

had grown, 

leaving her 

with an empty nest.

To this day, the Poem remains 

beautiful and poignant, and 

an audience favorite 

for my stage readings 

and podcast.

From my earliest Poems 

unto this day,

Poetry has provided a way 

to chronicle my experiences of depression 

as well as serve as a means 

to an eventual breakthrough 

to free me from its

physical and emotional chains.

This breakthrough 

consists of instant insight and clarity

coupled with energy 

and exuberance

and an outpouring 

of creativity 

in the form of 

a Poem or Poems -

sometimes in a single pen stroke.

The Poetry 

that lifted me 

out of the darkness

however,

held its own 

darker dimension.

The span of time 

from the onset of 

a depressive episode 

to a breakthrough 

involved weeks of 

psychic suffering 

and successive nights 

of sleep deprivation

as I pondered 

in search of an answer.

The exhilaration 

and euphoria of 

coming out on the other side 

created its own motive 

and drive

to stay up into 

the early morning hours, 

or not sleep at all,

to pen the perfect poem 

that held 

the holy grail of answers.

Unknown to me -

or to

even my psychotherapists -

this was how my own

unique form of mania 

was expressing

and cloaking itself.

This realization

would not arrive 

until 25 years after

my initial experience 

of depression as a teenager

when at the age of 41

the seriousness of an episode

required hospitalization

and for the first time

I was properly diagnosed 

and treated 

for depression and mania, 

commonly referred to 

as BipolarDisorder.

Until then,

during that 25 year period

between the ages of 16-41

with each depressive episode 

I hung on to a hope

that this breakthrough 

and Poem

that brought me 

out of darkness 

and despair 

would finally 

hold the answer:

putting a halt 

to my recurring episodes

and freeing me 

from my psychic suffering

once and for all.

Eventually, 

I would come

to understand 

that no breakthrough 

or Poem by itself

would ever hold 

a path to Healing.

But before

this could happen

I would first

need to experience

the stressors and triggers 

and depths of illness 

that awakened 

the sleeping giant 

of a major depressive

and manic episode.

And in that time of need

it would have only come

with the blessing

and good fortune 

of being admitted 

to McLean Hospital 

in Boston -

world renown for 

its patient care

and a leader 

in the field 

of mental health.

And even at McLean

it may have

never come

had I not

been placed

in the caring 

and competent hands

of a young psychiatrist 

and Harvard Professor

by the name of

Dr. Claire Carswell

at a monumental time

when I never

felt so scared,

betrayed, and all alone,

 lost in the unknown

of what lie ahead 

as a psychiatric patient,

and fearing that 

this might mark

an end to any hope

for an answer to my depression 

rather than 

a new beginning.

IV

Upon admission

and observation

Dr Carswell 

immediately determined 

that what I was experiencing 

was more than clinical depression.

Based on her assessment,

she placed me on a medication

mix more appropriate 

for a person 

suffering from depression

AND mania.

The fact that I

responded immediately 

and began to stabilize 

only validated 

Dr Carswell’s

hunch 

that Bipolar Disorder

was the correct

diagnosis.

To this day -

almost 20 years later -

the same triad of

a mood stabilizer,

an antidepressant,

and a dopamine and serotonin rebalancer 

that also serves as a sleep aid

continues to be my 

bread and butter 

medication regimen.

After a 10 day period

to fully stabilize

I transitioned to McLean’s

Partial Hospital and 

Intensive Outpatient Care.

While receiving the

benefit of daily 1-2-1s

w/ my mental health coordinator 

I began attending groups

that provided

Self-Care essential skills 

to reduce

my vulnerability 

to depression 

and mania

beginning with a structured

sleep routine.

As a group

we were also taught

Dialectical Behavior Therapy

or DBT:

an array of

Distress Tolerance,

Interpersonal Effectiveness

& Mindfulness skills

more akin to 

going to school 

for Life 101

than group therapy.

Since then,

I have been a lifetime learner 

and practitioner of DBT.

This did not mean 

I would never again

find myself in need of

a psychiatric setting.

When that

need arrived

it would be

Four Winds

Hospital 

an 8 minute drive 

from where I now live.

Four Winds 

not only offers 

the same Inpatient,

Partial Hospital, 

and Intensive Outpatient Care

as McLean,

but the same DBT Skill-based treatment program.

Destabilized, in crisis, 

or in need of 

reaching out for

a higher level of care,

the staff at Four Winds

always welcome me 

without judgment

chalking up 

my return visits

as an oppty 

to brush up 

on my DBT skills.

The Monday-Friday 

9am-4pm Day program 

in addition to groups,

included an opportunity 

to have my medications 

fine tuned - often

a contributing factor for

destabilizing 

as well as gentle walks

on their peaceful campus,

and a group cafeteria lunch break 

to ensure healthy eating 

and an opportunity to bond

w/ our patient peers 

& fellow DBT learners.

Thus far, 

it’s  been 5 years

since I sought 

extra help 

beyond the outpatient care 

of a psychiatrist and therapist.

And since Bipolar Disorder 

is an incurable disease, 

someday I may be 

knocking on the door

of Four Winds once again.

And if a need arises:

rather than a feeling 

of failure and shame

I’ll hold my head up 

with hope and gratitude.

IV

Depression and mania never goes away:

it’s always present and something I’ll always struggle with - some days a little more, some days a little less.

During those stretches 

when I’m able 

to strive and thrive 

sometimes I even forget

I have Bipolar Disorder.

But not to worry, 

depression or mania 

soon enough 

will tap me on the shoulder 

to remind me 

they’re not going anywhere.

With each new day

my Healing Journey 

continues to teach me 

that the  rhythmic dance

of my depression and mania

when tempered by medication,

caring and competent professionals,

and

a lifestyle designed 

around Self-Care 

does offer the answer

that I had always hoped to find.

As for my Poetry, 

I no longer need 

to endure 

extended periods 

of psychic pain 

and depriving myself of sleep 

in a creative frenzy to write a Poem.

But there was a time

after I was first 

diagnosed and treated at McLean

that the medications required 

to keep my depression 

and mania in check 

also silenced my Poetic Inspiration.

And it left me with a decision to make:

live w/ untreated Bipolar Disorder

choosing misery for the sake of the Muse 

OR

opt for a healthier 

and happier life -

even if it meant I might 

not ever write Poetry again.

Then and now:

I choose Life!

V

Thankfully over time by

•Staying faithful to my treatment plan, •Building my knowledge and skills to navigate my illness, and 

•Uncovering new touch points 

for Healing and Creativity

new pathways have opened to Inspiration and writing Poetry again.

This shift has shaped

most dramatically

in the last seven years 

when I decided

that the safest bet 

to hedge 

another major episode

and avoid hospitalization

was to retire at the age 53 

with the help of Social Security Disability.

It was time to choose Life once again!

VI

Yes, a history of mental illness 

runs on both sides of my family, 

but so does longevity.

And with more room 

for Self-Care 

and co-managing 

my depression and mania, 

comes

more time, energy 

and opportunities 

to create a way 

to share

both my Poetry 

and Healing Story 

in my podcast: 

Brian’s Poetry Oasis.

Through storytelling, music, 

and Poetry 

I invite listeners 

to accompany me 

on my Healing Journey 

while offering them 

their own Moment 

for Self Care and Healing,

thus enabling me 

to move from 

Hurting to Healing to Helping.

Closing Poem:

Who in this room?

Who in this room

has felt no pain?

Who in this room

has never suffered?

Who in this room

walks through life

with low self esteem

because somehow

you feel you deserve to?

Who in this room

is in such a rush;

conditioned

since childhood

to push, push, push;

to chase away fears

you can’t even name,

that tell you, you’re never enough?

Who in this room

has yet to be blessed

with the ache of a broken heart,

who took a chance to risk it all

to find your One True Love?

Who in this room

this very night

will step on to this stage,

share all of yourself

and hide nothing,

unlocking the door

of your cage,

flying free in a room

full of artists and friends

who support and encourage,

never judge,

where together, all of us,

create so sacred a space

that it feels more like church

than church does.

© 2018, 2022 Brian Crouth

Brian Crouth is a poet, performer, and podcast host from Saratoga Springs, NY. Since the onset of depression at the age of 12, his poetry has enabled him to be an active participant in his healing journey. By making his journey visible through poetry, music, and storytelling, Brian offers a healing path for others.

By Effy Redman

After a day of high school in eleventh grade, I stand in front of the stove in the small kitchen of the little house my family is renting in a grimy small town in upstate New York, a fork in my hand, and quickly eat leftover spaghetti with tomato sauce from the saucepan. I can’t get enough. I am starving because I skipped lunch, hiding out in the high school library reading a glossy magazine instead of venturing into the cacophonous cafeteria with tables full of cliques I didn’t fit into. The sensation of hunger became familiar, expected. I eat as much leftover pasta as I can, then I wash my hands and mouth at the kitchen sink. The reason I am self-conscious about eating at school is that I have a disability, a rare condition of facial paralysis called Moebius Syndrome, which makes eating, and other things, difficult for me. I cannot completely close my eyes or blink, and I speak a lot like a ventriloquist, without moving my lips. But I was raised to avoid talking about my disability. My parents taught me that it was preferable to act “normal,” like my four younger siblings. So, when I find myself hungry and alone in the high school library at lunchtime, instead of having compassion for the difficulties my disability causes me, I blame my isolation and deprivation on myself, on my apparent lack of social skills.

After drying my hands and face on a ragged tea towel, I press Play on the boom box my parents keep on a high shelf. I listen to a cassette tape of Belle and Sebastian, which one of my brother’s cool friends recorded for him. I love this music. It makes me feel like there is hope for me, although I can’t articulate where or how. Secretly, I wish I could hang out with my brother’s friends. Many of them are Punks, with hair chopped into spikes and dyed cool colors, piercings, Doc Marten boots, and ironic lunchboxes. I see them sauntering down corridors in small groups, acting aloof and refined. I can’t imagine them wanting to get to know me.

In my final year as an undergraduate student at Bennington College, I write a Senior Reflective Essay. In the essay, I talk for the first time about having a disability, what that means to me, although I don’t really know what it means to be disabled yet. Before this night, I have been silent about my disability, governed by its physical limitations yet too afraid of rejection to speak out. But now, after almost four years living away from home, where I was taught, however unintentionally, to act “normal,” I am ready. Distance gives me power. I remember sitting in my room in Stokes House on campus late at night, trying to write. My urge to procrastinate is so strong that I actually tie myself with a belt from a loop on my pants to my chair. It is late and the house is uncharacteristically quiet. I have a bottle of Dr. Pepper—my go-to when I have to pull an All-nighter—which I periodically drink from, loving the strangely familiar artificial flavor and the burn of carbonation in my mouth and throat. This is what I love about writing, this time alone to savor every sensation, to explore the corners of thought.

I forget that I am tied to a chair, that I am slightly hungry, and bone tired. All there is is the keyboard beneath my fingertips and the bright white page in front of me. I write about immigrating from England to America at age thirteen right after having plastic surgery, I write about loss and grief, disability, looking and feeling different. Even while I write, I am realizing for the first time it is all true, and that is the scariest thing. The past year, I have developed romantic interest in several women and, although it will be three more years before I come out as a lesbian, these early stages of accepting my sexuality highlight with astounding clarity that I also need to come out as having a disability. In order to be myself, I need to know myself. I don’t understand yet that this will be a journey. I probably shed a few tears. I definitely stare up at the white ceiling with its oddly shaped eaves more than once. When I finish the essay, just before dawn, I save my work, then crawl into bed fully clothed and pass out. It is the kind of sleep too deep for dreaming.

I wish now I had known this was only the beginning of perceiving my disability, the tip of the iceberg, so to speak. What made me sit down then and begin that journey was that it had finally become impossible for me to pretend I was “normal” any longer. I was beginning to understand desire, and my desire involved not wanting to hide my true self.The memory of taking that first step toward self-acceptance amazes me, because it felt then like a conclusion. However, the opposite could not have been more true. It was, in fact, a point of origin.

On my first day of teaching a Nonfiction Writing Workshop to undergraduate students at Hunter College in New York City, I asked my students to arrange their desks in a circle. It was 2016, winter, my fourth semester as a graduate student. The desks' metal legs scraping across the wooden floor sounded celebratory, like the beginning of something. As I had the previous semester on my first day teaching, looking around at my diverse student body, I felt almost maternal, a kind of responsibility new to me. Large windows at the classroom’s far end looked out over Lexington Avenue, whose festive din of traffic would punctuate our bi-weekly gatherings.

 Once everyone was seated, I stood at my desk halfway round the circle and introduced myself.

"By the way," I said, "I have a disability, a condition of facial paralysis that means I speak a lot like a ventriloquist." My new students were training their eyes on me with benevolent but acute focus. I continued.

"If you have difficulty understanding anything I say, feel free to ask, and I'll repeat myself."

There was a moment of silence. Benign, thoughtful. I asked the students to take turns introducing themselves. In their expressions, I saw compassion, and esteem. I had been nervous in the days leading up to this class, but my new students were completely accepting of my differences. This, in turn, bolstered my confidence. I launched into the semester feeling like I had taken flight. The students’ respect for me as an authority figure, a role model, inspired me to work harder than I ever had before.

The experience of introducing my disability to my new Nonfiction students sticks out in my memory because it deepened my journey into writing my first book—a memoir of growing up with a physical disability. Even while I was trying to teach students how to write nonfiction, I was trying to figure out how to write nonfiction myself, as a graduate student. The layers of learning and teaching, receiving and giving, exposed new truths both in the classroom I walked into and onto the pages I typed. Whereas writing my disability memoir was, at that time, intensely private, casually describing my disability to my new students felt refreshingly public.

I learned that each one of my students had a fierce drive to tell their story, too. I learned that my own story was more vulnerable than I had ever before imagined. For my thesis, I wrote about my body intimately, revealing details of my physical self I wouldn’t even share with my therapist. My graduate school classmates and professors, to their credit, only ever gave feedback and critiques that reinforced the validity of my story’s most vulnerable form. In a manner I never had before, I felt heard.

Sometimes, riding the 6 train packed with commuters on my way to teach two early mornings each week, I felt the pressure of bodies crammed in around me like words crowding my mind before my hands released them onto the page. I had never felt more human.

Some people gawk. They stare at me as though I am an oddity, a curiosity, because I have a facial difference. Occasionally, the gawkers are hostile, but this is very rare. Usually, people are simply wondering why I look different. I typically wait until I am getting to know someone to offer an explanation. I don’t feel that I owe anyone one, not even you. I remember my best friend in middle school telling me that, when I joined the school, there were other students who disliked me due to my difference. I had to prove myself. My friend explained that she had decided to give me a chance. This was in England, where I was born. We were lying on the bright yellow floorboards in my bedroom, near the bay window. My friend was half Black, but we never talked about that. It didn’t occur to me to ask her if she ever felt other, too. Our school was a tiny, private Christian school in inner city Manchester. We were both sheltered at home and exposed to the roughness of inner city living. She was one of many friends along the way who showed me true respect and unconditional love, which I would need in order to navigate becoming an adult. Friendship has always been my sanctuary from any hostility I might encounter in the world.

People talk to me. What I mean is, people make themselves vulnerable to me. I think this is because I radiate vulnerability and receptivity. Regardless of what I think of the people exposing their stories to me, I am repeatedly moved by their vulnerability, by their trust that I won’t judge them, even that I may help them. I have not always been nonjudgmental, though. During my first year of undergraduate college, I met a young woman who had cerebral palsy and used a walker. Though I wouldn’t admit to it, I was repelled by her disability, by her looking different, and refused her offer of friendship. In her, I saw too much of myself for comfort. I lied to her when she invited me to see a play on campus with her, saying I would be busy. I will always regret this missed opportunity for connection.

Several years ago, I spoke on the phone with a dear friend who had just broken up with her long-term boyfriend. She seemed most upset about all the time invested into the relationship. She was in Kentucky and I was in upstate New York, yet the conversation felt close. I told her I was sorry about what she was going through. I couldn’t think of much else to say. My own romantic relationships so far had all been short-lived. I didn’t have much basis for comparison. But I did understand personal loss. The loss of physical ability, the loss of childhood friends due to immigration, the loss of self. On some level, my friend knew this. And by inhabiting the moment centered in her loss, paradoxically, my own loss diminished, because of the comfort of the bond we shared.    

In the small city in upstate New York where I live, on a warm  day this November, I walk down my street. I pass a large brick house with an old walker abandoned on the front lawn. This place is a community residence for adults with mental health diagnoses. And, for a couple weeks in 2017, I lived there. What I haven’t told you yet is that, at age twenty-five, I was diagnosed with bipolar disorder. There is scientific research proving that Moebius Syndrome, and the inability to smile, is linked to depression. Thus, I believe my mental health diagnosis is essentially a component of my physical disability. Living with it, including several nervous breakdowns, has at times disrupted my life and relationships. That’s how I wound up in the community residence five years ago, just half a block from the beautiful apartment where, quite by coincidence, I now live independently. I pause for a moment on the sidewalk near the community residence and study the walker. It is perched on a slight hillock in the lawn so it tilts precariously to the side, as though pushed. The sun warms my face. In the abandoned walker, I see neglect, carelessness, fragility.

At forty, having lost everything then rebuilt my life a couple times, I can say that I am happy. This happiness is more of a baseline quiet satisfaction than anything ecstatic. My bipolar symptoms have been in remission for almost five years, my career is flourishing, and I have cultivated a diverse, supportive community. That said, there are still days when I feel emotionally or physically awful. But even then, I am conscious of being in a good place, a place where I can both work and rest. I cannot take the luxury of peace for granted. A large part of settling where I live has been discovering the local LGBTQ+ community and connecting with fellow queer people. Identity, I think, cannot be limited to a single title. It is essentially intersectional, because humanity is endlessly multi-faceted. For example, I am a lesbian neurodivergent immigrant with a physical disability. But maybe even that example is overly simplified. Doesn’t true identity shrink when we attempt to simply label it?

Although there are some knowns in my future—a book contract, a job contract, community events—I think of it as a blank page I am trying to write onto. Some days, I see the page clearly, it all makes sense. Other days, I need to sit back and stare out my windows holding a cup of coffee, waiting for insight, or at least the motivation to get up off the sofa and start something. Although control is essentially an illusion, I do feel more control over my life than I ever before have, because I have autonomy, which, for me, manifests as the freedom to make my own choices within the fabric woven from a diverse, supportive community. I have access to both the space to breathe and the human connections that help bring my journey to life. As each day unfolds, I remember that reality can be a gift.

Effy Redman is an author and disability advocate based in upstate New York. Her first book, a memoir of living with disability titled Saving Face, will be published by Vine Leaves Press in March 2024. Her writing has appeared in The New York Times and Vice, among other places. This story she is sharing deals with self-acceptance in the face of adversity.

By Steve Buechler

Health Story Collaborative · On Surviving a Lethal Diagnosis and Giving Back

For most of my adult life, my identity was rooted in my role as a professional sociologist. In that capacity, I taught graduate and undergraduate courses on social theory, social inequality, social movements, and sex and gender. I also published seven books on women’s movements, social movement theory, and critical sociology.

All that came to an abrupt halt at age 64 when a routine physical exam led to a diagnosis of acute myeloid leukemia, widely considered the deadliest of the blood cancers. Without immediate treatment for AML, life expectancy is measured in days or weeks, months if you’re lucky. So within 48 hours, I went from feeling perfectly fine to intensive chemotherapy and a five week hospital stay.

This initial treatment achieved a temporary remission that bought me time to decide upon further treatment for a disease that always comes back. Three months later I received a double umbilical cord blood stem cell transplant, followed by six months of gradual and uneven recovery.

Nothing about it was easy, but I hit the treatment trifecta: early remission, full donor engraftment, and no graft-versus-host disease. This led my oncologist to call me a “statistical outlier,” but it was her sweet words that stuck with me as she pronounced “this is as good as it gets.” I’m now more than six years out from my transplant, cancer-free, and considered cured.

I was too busy with cancer to develop a retirement plan. But I have found a calling as a peer volunteer, patient advocate, and writing workshop instructor in the cancer community. This work is meant to honor those who saved me.

For most of my life, doctors didn’t take me seriously because I didn’t have anything serious to treat. Sprained ankles and sore throats were pretty mundane. Leukemia was different, and the medical care I received was simply superb. My doctors and nurses combined skill and expertise with compassion and empathy in ways I will never forget or could ever repay.

I would never call cancer a “gift” or an “opportunity.” But if surviving cancer doesn’t change you in some foundational way, then you really weren’t paying attention. The coping skills I developed throughout treatment continue to serve me well in many aspects of my life, and my odyssey has left me with profound gratitude, deep empathy, renewed resilience, and a rich appreciation for the simple pleasures of life.

A fuller version of my story may be found in my memoir How Steve Became Ralph: A Cancer/Stem Cell Odyssey (with Jokes)” and at www.stevebuechlerauthor.com.

Audio production by Alexandra Salmon

Music credits:

10 minutes Past by Blue Dot Sessions

Edoy by Praire

Amadines by Sergey Cheremisinov 

Garden Tiger by Pictures of the Floating World 

By Michael Robin

The narrative arc of my story is characterized by three acts but they are in reverse order – the ending, the transitional or healing stage, and new beginnings. My story begins with an abrupt ending to what had been the first sixty-three years of my life. 

On November 27, 2013, I made an attempt to end my life.  For five intense months prior, the thought of suicide held me captive. A series of traumatic life events were what drove me to suicide.  I had lost my job, income, and health insurance; I feared losing my professional therapy license and home; and my marriage was imploding. Isolated and cut off from the world, uncertain about who I was and why my life mattered, my ability to resist the temptation for oblivion faded rapidly.  I couldn’t, in the words of F. Scott Fitzgerald, “hold in balance the sense of futility of effort and the sense of the necessity to struggle.” 

Living through a suicide attempt is a unique kind of bereavement.  It was after my suicide attempt that I learned that the feeling of suicidal despair is impermanent.  The thought that my suffering would never end is what drove my suicidal behavior.  Suspended in time and social space, my death was spiritual, not corporeal. As my old self was dying, my new self was struggling to be born.  I identified with the writer Matthew Arnold who wrote, “I was wandering between two worlds, one dead/the other powerless to be born.” I had been in “limbo”, crossing an extended threshold, where I entered as one person and came out another.  My suicide attempt marked the turning point in my life. 

Recovering from a suicide attempt has not been simple or easy.  I’ve had no self-help formula to rely on, nor have I been offered “cheap grace.”  I write about the past to re-present my disparate emotions from a more enlightened present.  With the passage of time, my perspective has changed and evolved many times over. Remembering and revising my story gives significance to my life.   I no longer regret the past.  What happened, happened.  A life story can be revised, but not relived.

In my writing, I seek transcendence, a sense of insight and awareness about what is of ultimate significance.  As I do so, I encounter the sacred realm which is the transition point between endings and new beginnings.  It is as if my words are pulling me into new realms of existence.  I am writing myself out of the deep hole I once found myself in.  This is the spiritual power of transformative writing.  I found light by peering into the darkness. 

As a survivor of a suicide attempt, I feel responsible to share my story as a lived experience.  I write to offer a singular perspective on what it feels like to be suicidal, attempt suicide, survive, and be radically transformed by the experience.  While I am hardly the first person to attempt suicide, I have felt the uniqueness of my story.   I am one of the few writers on suicide who has been a seasoned therapist, teacher, author, and patient.  I write to comprehend the paradoxical richness of my story, the wisdom it has bequeathed to me, and the insights I might share with others. 

I write to describe my inner experience; what I feel now, what I felt then, and their interconnection.  In my writing, I seek transformation and transcendence, a sense of insight and awareness about what is of ultimate significance.  One of the striking things about writing is how it has changed me as a person.  Who I was is not who I am now, but I could not be who I am without writing about what I’ve been going through. 

Nine years ago, I was suffering from the ancient sin of acedia which the thirteenth century philosopher, St. Thomas Aquinas defined as a “loss of energy to begin new things.”  I felt like I was carrying the weight of the world on my shoulders.  In the depths of despair, I lacked perspective, unable to see the sacredness of life itself.  To move forward, I had to face my suicide attempt for what it was. 

At the time, I didn’t recognize my survival as the opportunity it was.  It felt inauspicious, unlikely to ever be seen as a blessing.  But as I leaned into the pain, I came to appreciate being a member of what Albert Schweitzer called the “brotherhood of those who bear the mark of pain.”  The more I befriended my pain, the less it burdened me.  My pain lessens when I am less afraid of it.  The more I accept it, the less it overwhelms me.

It has been my responsibility to play an active role in finding meaning to my suffering; to learn and grow from the experience.  This viewpoint has allowed me to grow into the person I am becoming.  I am grateful that God graced me with the wisdom and courage to persevere.  From Holocaust survivor, Elie Wiesel, I learned “to begin something new is a wonderous thing.  But to lose everything and be able to begin over again is nothing less than a miracle.”  For the first time in my life, I now fully appreciate the blessing of being alive.

It is only in hindsight, that I can see how transformational these losses have been.  I’ve looked to the spiritual traditions, not just social psychology, to guide me on my journey.  If I was to thrive and not merely survive, I had to walk down what Native Americans call the Red Road, a metaphoric symbol of healing and transformation.  It took many months for me to see my losses as harbingers of new beginnings. Converting memories of loss to memories of meaning has been my ongoing existential task.  While I’m a fairly stationary person, I’ve traveled many miles in my imagination.

My healing imagination resists the idea that I should not feel the pain of the past.  From the beginning, others wanted me to “be over” the pain without understanding that grieving is an ongoing and life-affirming process.  Grief is not a pathological process to be cured.  My quest has been to experience grief, not classify it.  In the process, I have a profound sense of gratitude for my continued life.  I don’t need to bring the nebulous concept of “closure” to my old life to feel fully alive today.

Imposing a semblance of meaning to what had once been so traumatizing, allows me to feel better, think more clearly, and function with more confidence.  Reducing the chatter in my brain has allowed me to be more discerning.  I have created a calming distance between my thoughts now, and what happened then.  Being mindful in the present does not mean I’m not affected by the past.  I still have anxiety but I no longer have the agitation that once overwhelmed me.  I no longer fear dying alone and unloved, because I am no longer alone and unloved.

Of this, I am sure.  If it was up to me, I would plead for eternal life in this world.  I don’t want to die but when I do, I want my life to be well-lived.  I need to feel that my life has mattered, that in my small way, I have contributed something of value to the human experience.  I want my writing to be an important part of my spiritual legacy.

Much of the value of writing about trauma is in how words are received.  I have found power, a sense of personal efficacy when my words influence and inspire others.  The most common response to my writing has been, “Wow Michael, this is going to help a lot of people when it is published.” Writing has helped me understand my experience by using transformative language that helps reshape my sense of self and relationships with others.

As I pass through the seasons of my life, I appreciate the wisdom of singer Joni Mitchell who wrote, “Something’s lost, but something’s gained, in living every day.”  It’s been said that you cannot have a testimony without a test.  I had to go through a cleansing fire to rise from the ashes.  For the first time in my life, I am truly happy to be alive.  Living a life of meaning has been the guiding light that illuminates my path forward, allowing me to see beyond myself.  My highest aspiration is when I die, my friends and loved one’s will say a hearty and eternal “Amen.”

Read part two: On Living with Parkinson’s Disease

---

  Michael Robin is a clinical social worker with more than forty years of experience.

Check Out Our Fall Newsletter!

Check out our 2022 Fall Newsletter to read about our current initiatives here, and see below for a preview:

A Letter From Our Director

I love this time of year, the harvest season, which inspires a natural reflection on the rewards our efforts have reaped. We get to surrender anything that is not serving us to the compost pile, and think ahead to what we may need with us during the quiet months of winter. We at Health Story Collaborative feel grateful as we reflect back on the impactful projects and partnerships of this past year, and excited as we turn our attention towards innovative new programming we are planning for next year.

In early 2023, we will launch an inaugural virtual annual event, which will showcase highlights of our work including a Healing Story Session and inspiring guest speakers. Our Director of Programming will lead monthly creative writing virtual meet-up’s, open to all. Quarterly community events will offer another consistent opportunity for us to gather, reflect, learn, and lean on one another.

At this stage in our organization’s growth, we feel especially committed to building, broadening, and enriching our community. If you are interested in getting more involved in these efforts, please never hesitate to be in touch.

Below we highlight several accomplishments of this year to date: recent media appearances, stories featured on our blog, engaging workshops, and ongoing community partnerships.

Many thanks to each of you who make up this community. We could not continue to pursue our mission without your participation and support.

Annie Brewster, M.D.
Health Story Collaborative Founder and Executive Director