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

Segment 11 in our series Soul Chronicles for the Chronically Ill

by Shaler McClure Wright

Health Story Collaborative · Soul Chronicles: Deepening Into Soulfulness

Introduction

You’re listening to episode eleven 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 monthly audio column. My name is Shaler McClure Wright and I’m a writer/creative living with Chronic Inflammatory Response Syndrome.

Today I’d like to tell you the story of how illness led me to become a more soulful person.

I think of soulfulness as a spiritual orientation to life, but not as belonging to a specific religion. A soulful outlook facilitates meaning and connection—with people, animals, and nature. And it helps us make better choices by providing new frames of reference. A soulful approach to life can also lead us to reconsider forgotten lessons from the past and help us receive wisdom from our ancestors. And over time, with practice and contemplation, we may just become wiser ourselves.

For me, deepening into soulfulness has been a gradual process, like foliage deepening in color with the change of seasons. Mother Nature has been a patient and generous guide to my soulful education. But she wasn’t the catalyst for it; illness was. It took a one-two punch of medical adversity to open me to a perspective of possibilities beyond the limited vision of my youth.

Within the first few months of the year 2000, I was diagnosed with stage one breast cancer and a pituitary tumor. For the first time in my life I could not simply take health for granted. I was humbled, but it would take another fourteen years—and a different threshold of physical discomfort—before I would fully embrace a soulful way of life.

I’m not sure why it took me so long. Perhaps I was in denial, or wanted to believe in magical remission, or maybe my prognosis just wasn’t dire enough to prompt immediate change. After all, my life wasn’t in danger and the cancer and tumor weren’t painful. But the treatment was. There were invasive surgical procedures, medications with adverse effects, and extending uncertainties of outcome—looong extensions.  As treatments dragged on for more than a decade, it became clear these invaders weren’t going away on their own. And once I realized they had become an integral part of me, I became increasingly impatient and anxious.

My world grew smaller and I felt disconnected from my own body. I was sinking into despair. I felt trapped in a perpetual state of not-knowing—of wanting answers and guarantees, while at the same time knowing there were none. The truth, as I saw it, was simple: my body had betrayed me. My world had become harsh and dehumanizing, and I wanted to soften the confines of my health reality, but didn’t know how (to). So I asked my doctors for help. They decided improving my sleep would be a good first step, and prescribed a sedative called klonopin. And voilà, it worked! But—and I’ll bet some of you already know what I’m about to say—I kept needing more as my tolerance increased. Xanax was added for ‘breakthrough anxiety’ and within a few years I was taking enough of each to subdue a wild stallion.

Eventually my tumor was shrunk and cancer removed, but I was left with an unexpected problem that turned out to be more painful—and wrought more havoc on my body—than the cancer or tumor (had). I’d become addicted to benzodiazepines. And when it was time to stop taking them, I discovered I was one of the unlucky patients who’d have an unforgettably rough experience.

Within 48 hours of discontinuation, my body had a horrific reaction—inner tremors; cramping muscles, a non-stop sense of spinning every time I stood up; ringing ears, full-body jolts, shakes and sweats, buckling knees and ankles, extreme sensitivity to sound and light, and crippling insomnia—and having all this to deal with, I knew it would be impossible to ‘just stop.’ I would have to reduce my dose in very small increments, if I could do it at all. And I truly had no idea if I would succeed.

That was the moment—when I faced a foreseeable future of micro steps forward with incapacitating discomfort accompanying each (step)—I began to deepen into soulfuness.  I was prompted—no, make that ‘kicked in the butt’— by constant physical pain I simply could not ignore. My life was held hostage by tiny blue and white pills.

So, fourteen years after my cancer and tumor diagnoses, I had finally reached my personal threshold for pain—not from malignancy, but from anxiety pills—and was left with no choice but to slowly taper my dose over the course of a very long year, all the while barely being able to function. My thirteen-month path to benzo freedom was the hardest path I’ve ever followed.

To make things worse, I appeared normal. The drugs’ relentless assaults on my body were mostly invisible. So even though my friends and family wanted to be supportive, it was very hard for them to understand. I needed to find a context for my experience that made it easier to grasp, and a way to articulate it that others could recognize.

To my surprise, that context would emerge from observing nature, and describing what I saw with soulful language. By calling attention to the parallels between my experience with illness and the images I found in nature, I could help others understand what I was going through. I guess you could say soulfulness came to me as a series of impressions gathered from nature one image at a time.

 I’d like to tell you about the first image that stood out to me because it remains one of the strongest: 

I remember dragging myself downstairs to the breakfast nook one sleepless morning and slumping into a wooden chair by the window. My husband had hung a red hummingbird feeder on a branch of the lilac bush just outside, and there were four ruby-throated beauties darting between limbs as they took turns hovering for sips of sugar water.

I could see their hearts thumping as their feathers spread and contracted. The sunlight reflected their colorful energy and I could feel their warm glow penetrate through the glass. Oh how I wanted to go outside and join them! I wanted to stretch out my finger and become their safe little perch between sips. But my world would start spinning every time I tried to stand, and my hand was shaking too much to be of any use to them. So I just sat there, and marveled.

I marveled at their iridescent green breasts and knitting-needle beaks and wondered how they could hover so perfectly in one place, feeding with such piercing precision, even while their wings were beating wildly. So much effort for the illusion of stillness!

Then, in my moment of incapacity, I realized I was not so different from those hummingbirds. My body too, was undergoing a monumental effort to stabilize itself, yet for all appearances, I was just sitting there, frozen in space. When I looked up again, the pane of glass between us seemed to disappear and I felt myself right there with those hummingbirds—you might even say my soul connected with their souls—and I felt less alone in my body’s efforts to remain stable.

Because of the hummingbirds, I developed a new understanding of my primary pain—a constant inner tremor that rattled me to the bone. But once I could visualize that tremor with new imagery, it was no longer frightening. Instead of feeling out of control, I could now imagine my body as trying to stabilize itself with ‘hummingbird energy.’

But that wasn’t their only gift to me. Deepening into soulfulness with the hummingbirds also led me to develop a creative practice at that time.

 I wanted to share my hummingbird story, but it was hard for me to talk without being distracted by pain. So instead, I began a creative practice of daily writing. I joined an online peer support group and started a blog, sharing hopes and concerns with others who were going through what I was going through. Some were further along and more healed (than I was), and I was encouraged by their progress. But the road to recovery was not direct for any of us and setbacks were frequent.

During this period of uncertainty I opened myself to the healing power of gratitude, and I consider gratitude to be a facilitator of soulfulness. I was grateful for my blogging buddies and our exchanges—mostly humorous memes and beautiful images, because our brains were too scrambled to take in much else. And through our exchanges, I learned to distract myself from pain by redirecting my attention to an appreciation of beauty. I discovered that when I could pour myself into a state of gratitude or appreciation, I felt better. And if I could laugh—better yet!—I might even feel as much relief as the sedatives had once provided. And to my surprise, my buddies agreed they felt that way too.

We learned together that peer support can be therapeutic, and discovered the community nature of healing. When we feel connected to others with similar challenges, it seems our bodies heal faster. It’s as if we’re physically lifted out of our miseries by others who can understand our pain as their own. And even though the relief I felt was temporary, the writings and images I shared with my buddies remain precious to me to this day. Such is the impact of community.

When it comes to feeling seen, heard and understood, peers can feel more like family than a traditional family does, especially when living with invisible illness. Bohemian poet Rainer Maria Rilke lived with illness and depression from the time he was in grade school, and he offered this reflection on peer support in “Letters to a Young Poet,” letter 8:

“Do not believe that he who seeks to comfort you lives untroubled among the simple and quiet words that sometimes do you good. His life has much difficulty and sadness and remains far behind yours. Were it otherwise he would never have been able to find those words.”

Rilke’s humble compassion emerged from his parallel experience; the same can be said for others who have known suffering. Those who offer extraordinary words of comfort most likely live troubled lives themselves; that’s the only way they can find the words. At first I didn’t understand how peer support connected with soulfulness, but it’s true. The words that touch us most, often come from other troubled souls—and that’s exactly why we need each other.

Like soulfulness, peer support for others with illness is often expressed through gratitude, appreciation of beauty, and finding hope. Equally important is what is left unsaid— a deep understanding, without the constant need to explain or defend one’s self. In this way, illness can be a great facilitator of connection in the art of living a soulful life.

When illness is chronic, a soulful outlook can be a valuable tool to help us manage pain and discomfort. By accepting soulfulness, we’re accepting a perspective larger than ourselves. And when we widen the lens from ‘my soul’ to ‘all souls,’ we can see how the patterns in life repeat in nature and throughout history. Then we can contemplate those patterns, and see our own situation more clearly in relation to others. But reaching clarity takes time. Sometimes a long, long time.

Today, eight years after my experience, the hummingbirds are still with me in memory, as a vivid reminder of the most challenging year of my life. Though my pain was mostly invisible, it was indeed very real. And within that experience, though I think I know it well, there are probably more lessons I have yet to understand. To help you see the value of this reminder, let’s return to Rilke’s Letter 8:

“We could easily be made to believe that nothing has happened, and yet we have changed, as a house changes into which a guest has entered. We cannot say who has come, perhaps we shall never know, but many signs indicate that the future enters into us in this way in order to transform itself in us long before it happens.”

The gift of the hummingbirds—offering me an image of stability when I needed it most—was so powerful it changed my life. I saw myself in their tiny bodies and their mastery of form gave me a clearer understanding of the strength inside myself. Deepening into soulfulness can help us recognize unexpected connections in the threads of everyday life. Whether it takes a few days or fourteen years, I hope your path to soulfulness is rich with images that inspire you, and companions who understand.

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 Karen Pellicano

I am not the kind of person who regularly goes to a doctor. I’ve been told by doctors that they know the problem is worse than I’m reporting, because the fact that I’m willing to go to the office at all, that tells them that something went terribly wrong.

When I started going to the doctor with crippling lower back pain, not once, but 6 times in two months, it should have sent up red flags. But at the time, my doctor’s office was a training center for new graduates who hadn’t picked a specialty yet. Doctors stayed for 6 months to a year, and then continued their education. One said I had IBS, because of my age and the fact that I’m white. One suspected a slipped disc. One decided that I was merely ‘hysterical’ and should take tranquilizers.

And that is how, on a beautiful spring Saturday morning, I ended up howling like a wild animal and waiting for my husband to return from work to take me to the hospital. I’m still not sure why I didn’t call 911 - at the time, it honestly hadn’t occurred to me. When my beloved pulled in at 1:00, I was waiting with my purse in my hand. The road between his work and our house was out of cell range, so he didn’t have any idea that something was wrong. Our daughter was in the house cleaning on overdrive to combat the stress, and I was attempting to comfort her, telling her that I was fine, then laying on the floor in a fetal position and screaming. She didn’t believe me.

Because I had a couple of hours of agony and no self-control, I turned to online self-diagnosis and determined that it was appendicitis. Armed with this knowledge and a bag to hold the vomit that was erupting from my body, we started the 40-minute drive to the hospital. By the time we arrived, I could barely stand up. I went to the front desk and announced that I had appendicitis. Then I collapsed. My husband came from parking the car and I was already in the treatment room.

The nurse told me it was a kidney stone and I told her that I knew she was wrong, because I googled the symptoms and it was clearly appendicitis. Then they gave me morphine and the world started to make sense again. I was only able to have enough morphine to last for 15 minutes at a time, so during those 15 minute intervals my husband and I made plans for next steps. By the end of the 15 minutes, I was barely lucid, begging for relief. And then the wonderful warm sensation of morphine would clear my mind for another 15 minutes of productive thought.

A CT scan showed that the left kidney was completely impacted with kidney stones and the right kidney had two stones that were 50mm and 75mm - a ‘normal’ stone is 2-5mm, and a very large stone is anything over 7mm. I was rushed into emergency surgery for the first of what would be six surgeries to remove stones and try to salvage the left kidney.

For the next three months, I was in surgery every other Monday, meeting with the surgeon on Wednesdays to discuss the viability of saving the left kidney and planning the next surgery or watching Gilmore Girls. I still worked every day, even though I had stents in both kidneys for the duration of the three months and by the end of the day Loreli’s problems seemed more manageable than mine.

Three months later, the left kidney is somewhat intact, functioning at 10%, the right kidney is mostly intact, functioning at 85%, and it’s over.

Except that it’s not.

My condition, it was explained to me, is very unusual and I will likely suffer from kidney stones for the rest of my life. The doctors would ‘keep an eye on it’ in regular tests. I would take a medicine which caused violent stomach revolts. At this point I had been a T2 Diabetic for a few years, and though the kidney complications had nothing to do with the diabetes, the diabetes very much impacted the kidney stones. So I was armed with the food restrictions of diabetes, and the food restrictions of my particular kidney disorder, nauseating medicine, regular testing and a survey to gauge my satisfaction with my care.

The food restrictions for each illness contradicted each other and I still struggle to figure out what to eat. I’ve had many more kidney stones and the diabetes has progressed. The kidney disorder turned into a life-threatening infection when the ICU was full of COVID patients. I learned that I make uric acid and calcium kidney stones, which came with further food restrictions. Four times a year I go for a battery of uncomfortable tests and I have permanent damage to all parts of my renal system.

I have the ability to see the future now. My surgeon told me that we know what’s going to kill me, we just aren’t sure when. I’ve had 11 kidney surgeries, countless ‘procedures’, regular stents in both kidneys for weeks at a time, blood tests and quarterly 24-hour urine collections.

Now that I have a sense of how my body works, all the fear of the past 7 years is threatening my mental health. Watching my body transform from strong and capable, to withered and tired has brought on a number of interesting changes. When I’m tired now, I sit down. I didn’t before. When I’m sad, I cry. When I’m hungry… Well, honestly, I still have a lot of issues around food. And when I used to tell friends ‘it’s not worth your health’ as a solution to their life problems - now I really embrace that reality. For me, it all fell apart on a spring Saturday morning and I’m still reeling from the issues and maintenance that come with that.

At my most recent series of appointments, every test came back in a safe range. For the first time in 10 years, I am tentatively healthy. Some days I focus on the word healthy, others I focus on tentatively. Some days I thank my body for what it’s come through, others I cry for what is still ahead. I cry for the fact that I will never be healthy without the caveat that it can all be taken away in a minute.

And some days, I’m grateful. I’ve come to realize that everyone should spend a few days or weeks in a body that doesn’t work as expected. You learn a lot about yourself and the kind of person you want to be.

I was very active before I got sick. I loved hiking and extreme mountain biking. There was no challenge I would rise to and I was proud of that. I hike slower now. I bike on the roads or smooth trails. I’m conscious of the fact that my immune system is compromised. I take medicine and wear a mask in a crowded place. But I also read more. Write more. Think more. Rest more. I’m a more thoughtful and compassionate person. I know that tomorrow could start the road to dialysis or diabetic complications and I take it more seriously. At 54, I’m going back to school to get my Public Health Degree because I want to help people learn to navigate the system that educated me the hard way. I recognize the toll that stress takes and I meditate throughout my day. It’s gone from being a 20-minute chore to check off a list, to a regular, normal part of my life. In a stressful meeting, I will excuse myself to go to the bathroom and take a minute to check in with how I feel. I have a continuous glucose monitor that embarrassed me at first, but now it’s part of my routine. I don’t care who knows and I’m happy to explain it to people with questions. I know that even if I don’t know how I feel, the beeper in my pocket knows.

Being sick and accepting that I’ll never be perfectly healthy again has given me the freedom to drop the shame of imperfection and really start to embrace the flawed people around me. I said my goodbyes and made my peace and then bounced back. Then I did it all again, and bounced back again. Doing end-of-life activities once is humbling, but doing it three times is enlightening. You start to understand what you’re saying goodbye to, what you need to hold on to until the very end, and what you have to let go.

Karen lives in New Hampshire with her husband and son. She enjoys all of the outdoor joys of New Hampshire living and is slowing down to appreciate it all more than she used to.

By Helen Zazulak

After an ultrasound and biopsy, on Friday March 2, 2018, I heard the words no woman wants to hear: "You have invasive breast cancer."

 My mind went blank. This was the same disease that had taken the lives of both of my grandmothers and inflicted my aunt and mother who are still alive.

The radiologist continued as I tried to focus: "Your tumor is estrogen, progesterone, and HER-2 positive."

A trifecta of cancer horror, but very treatable.

"We will set up an appointment with a surgeon and an oncologist".
Then winter in New England arrived with a vengeance and the most snow ever recorded in March. A blizzard conveniently came on the day of my appointment with the surgeon and oncologist. Was someone trying to torture me?
On the day I finally met with the surgeon and oncologist, I had two cancer survivors with me: my brother, who had Hodgkin's lymphoma in his 20s, and my boyfriend, who had melanoma two years before. Besides my brother and my boyfriend, my cancer team also included my parents. All four are cancer survivors, amazingly!
They listened, asked great questions, and provided input - all things they had learned from their own cancer journeys.

I'm not the average patient. At my previous job, I tested and researched targeted cancer treatments. One of these treatments, a monoclonal antibody called Herceptin, became part of my treatment plan. During my first meeting with the oncologist, she printed a medical article about my treatment plan, stating: "I usually give biotech people like you an article to read." After reading the article, I felt like I had some type of control over my treatment and the right doctor to be part of my growing team.

While waiting for surgery, I caught norovirus, and was sick for two weeks, losing eight pounds. As the surgery date approached, I feared I had lost too much weight and that out-of-range blood test results would further delay my surgery. On a particularly bad Sunday, when norovirus still had its grip on me, I did not make it to the bathroom in time, ruining my clothes. I cried out to God with tears running down my face, feeling especially sorry for myself: "God, if I have to go through breast cancer, please let me be able to help someone else get through it too."
The norovirus eased and I passed the pre-op with flying colors, so my surgery went ahead as planned. New England weather even cooperated on surgery day. The surgeon removed my sentinel lymph node, tested my other lymph nodes and got rid of that nasty tumor in my left breast. After the successful surgery, I found out that my lymph nodes were cancer free. Phew!

 As I recovered from surgery, friends and family came to keep me company and assist me with meals and housework. I couldn’t lift anything heavier than one pound, which is pretty much everything. If I overdid it, I would know because my surgical area pounded.

One spring day, Jackie - a nurse, friend, and neighbor who built her life around caring for others - stopped over for a visit. Jackie’s family and mine grew up together. My parents and Jackie always encouraged my interest in science and medicine. Having them as mentors made a huge impact on me choosing science as my career. Despite our differences in faith (Jackie's family is Jewish and mine is Catholic) we had an understanding because we all believed in the same God who united us all. There's nothing better than a long-time friend who is never out of either interesting stories or the photographs to go along with them.

Jackie asked about the surgery and my recovery, sounding just like a nurse, and I explained my limitations. She smiled and offered assistance, but my team had already done most of the “heavy lifting.”

A couple of months later, before my chemo started, Jackie called and I assumed it was to check in on me. Boy, was I shocked when she said: "They found something on my mammogram and I have an ultrasound scheduled."

 I responded: "Oh, I bet it's just nothing. The new mammograms are very sensitive."
But that's not what happened. Jackie had a biopsy and had the same awful waiting time I recalled from my own experience just months before. She then called with unsettling news: "I have invasive breast cancer, too! The tumor is estrogen positive. I need to have the same surgery that you had. Because I'm older and my tumor is smaller, the oncologist feels that I will be okay with just surgery."

 Before her operation, Jackie and I sat at my kitchen table discussing medical articles and information about the surgery that I had copied from my own pre-surgical information. In a few weeks, she would have the same exact surgery that I had months before. The timing of the diagnosis and surgery was uncanny.

I told my friend Rob, who I had met at a creative writing class as the local technical high school, about Jackie and my cry out to God. What he said would forever change how Jackie and I viewed the situation: "I became a therapist after reading the Talmud. It says 'If you save one person, then you save the whole world,' and that's what you have done by helping Jackie.”

Here was the answer to my call out to God on that terrible norovirus Sunday. Here I was helping that one person months after my surgery. God had heard me and sent along Jackie. Of course, I would never wish cancer on anyone, especially a longtime friend. But here we were going through the same surgery just months apart.
Jackie needed to hear this.
After her successful surgery, Jackie called and we had a very memorable conversation:

“Jackie, do you know that saying from the Talmud, ‘If you save one person, then you save the whole world?’” I asked.

“Of course I do.”

 I explained about my cry out to God. It did not take her long to make the connection.

 “So, that means that God heard you. Because there is no way that I could have gotten through breast cancer without you! Thank you for saving me.”

 Over the phone she could not see the tears that came to my eyes nor did she realize how much I would need her words to get through the months of chemo, targeted therapy, and radiation that were coming my way next.

 I continued my breast cancer protocol, experiencing months of weakness, fatigue, hair loss, and exhaustion. In the spring of 2019, I had my last Herceptin treatment and my energy and hair slowly started to return. Today, Jackie and I both remain cancer free. My family, friends, acquaintances, medical staff, and skilled doctors continue to be my dedicated team. They say that it takes a village. But that's crap. It takes an entire city!

 Then the pandemic began.

 After my cancer experience, I was well prepared for stay-at-home advisories. I had been living them since 2018. The same hobbies and activities that were great distractions during my cancer adventure soon became mainstay for the rest of the country and the world. I told everyone that surviving breast cancer is getting me through the pandemic.

In late winter 2020, COVID vaccines arrived. We were all filled with hope now that we had a way to combat this awful pandemic. The local technical high school, the same one where I first met Rob at the creative writing class, was one of the COVID vaccination sites in the city. Now that Jackie was feeling so much better from her adventure with breast cancer, when she heard that volunteers were needed at the vaccination site, she signed up. She donned a moon suit and manned the check-in area helping with paperwork. Her actions were right from the Talmud: she was trying to save just one person. And who that person was would soon surprise even me.

One Saturday, Rob showed up for his scheduled COVID vaccine at the technical high school vaccine site. And guess who helped him with checking in and paperwork? Jackie! They had never met each other. The only way I knew that they met then was because my mother sent me a photo of Jackie wearing her moon suit at the vaccination site.

I emailed Rob the photo of Jackie in her moon suit, and he said: “Of course, I recognize her. She was the friendly, spunky check-in person at the vaccination site at the technical high school last Saturday.”

So two people who had survived so much and had done so much to save the world already were brought together in some of the strangest conditions: a pandemic, a city vaccination clinic, and a moon suit. It was me, the third person who had saved Jackie, who was able to make this unbelievable connection.

Who have you saved today? Who has saved you? Keep your eyes open because they may be smiling at you with their eyes behind a mask at the grocery store or doctor’s office. Maybe they are a kind neighbor, the mail carrier, or long-time friend. We are all striving for something every day. We are all trying to save just one person, and in so doing we are saving the whole world and ourselves along the way.

Helen Zazulak is a biotechnology research scientist, volunteer for the Government Relations Advisory Committee and District Activist Leader for the National MS Society, creative writer, and biography and history book club member.

Segment 10 in our series Soul Chronicles for the Chronically Ill

by Shaler McClure Wright

Health Story Collaborative · Soul Chronicles: When Doctors Are Among Us

You’re listening to episode ten 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 monthly audio column. My name is Shaler McClure Wright and I’m a writer/creative living with Chronic Inflammatory Response Syndrome.

Story - When Doctors Are Among Us

Sometimes I feel like my life has been shared more deeply with doctors than with friends. We entrust doctors with our medical histories, and that makes them a special kind of confidant. The doctor-patient relationship is rightfully protected by healthy boundaries, but when treatment spans the course of years, circumstances can arise that allow the relationship between a doctor and patient to deepen beyond the pages of a patient’s chart.

At first, I might see a doctor as an unapproachable god, or an exotic shamant, or even as a befuddled wizard hidden behind a suspiciously dark curtain. But over time, I’ve been gifted with a few unexpected moments that lift the veil of star-struck admiration and allow me to connect with a doctor soul to soul.

I remember one such moment with my oncologist. She called me into her office to let me know I was ready to graduate from her care. But as she entered the exam room, intending to congratulate me on being ten years cancer-free, I couldn’t help but notice she seemed very troubled. “What’s wrong?” I asked. And after some reluctance, she replied, “Robin Williams is dead.” She had just heard the shocking news. The world had lost a great humanitarian.

We broke into tears. Looking together, we whispered the words, “Oh Captain! My Captain!”; it was the best we could do to acknowledge the truth of his death without becoming overwhelmed. We were referring, of course, to Robin’s inspiring role as English teacher John Keating in “Dead Poets Society.” It was a role close to his heart, and in that moment, memories of his performance softened our sorrow and made us smile.

 We spent the next thirty minutes exchanging his lines from the film. I began with my favorite, “We didn’t just read poetry; we let it drip from our tongues like honey.” To which she replied, “Carpe diem. Seize the day, boys. Make your lives extraordinary.” That seemed like a perfect ending. She offered me a hug. We never talked about my breasts. There was no need; we had been talking about them for more than a decade. That was the last time I saw my oncologist. But from that day on I knew we had more in common than my diagnosis.

Later that day I reminded myself of Walt Whitman’s famous line in context. Here’s the first couplet :

“O Captain! My Captain! our fearful trip is done,

The ship has weather’d every rack, the prize we sought is won,”

This poem marks the end of a voyage, the end of a battle; just as my appointment marked the end of my journey with cancer and the end of Robin’s life. Bittersweet as it was, Robin probably would’ve loved that.

If you’ve known a doctor who embraces their practice with the depth of a poet, you’ve been blessed. But it’s not unusual. In fact, the Journal of the American Medical Association has a regular section featuring practitioners’ poetry, and it’s edited by Dr. Rafael Campo. In an interview with Harvard Magazine, Campo explained, “Poetry allows us to hear the beating of the heart. It allows us to immerse ourselves fully in another person’s voice, and allows doctors to connect with patients on a more personal level.” His belief is reflected in his poetry, as in this passage from his poem “Cardiology”:

“They say the heart is just a muscle. Or

the heart is where the human soul resides.

I saw myself in you.”

Dr. Campo often speaks of healing and avoids the word ‘cure.’ “When a cure isn’t possible,” he says, “what do we still have to offer our patients? Our own humanity.” A precious gift indeed.

For those of us with ongoing health conditions, the psychological tension between seeking a cure and accepting our limitations can be strong. And doctors may be hard-pressed to find time to address this dilemma with humanity, but sometimes they find a way.

The doctor who diagnosed my chronic illness is a molecular biologist and medical pioneer. His research is as close to artistry as science can get. Not only does he embrace medical mysteries, he embraces them with enthusiasm. The way he explores the structural elegance of biology along with its functional mysteries is an expression of beauty—I guess you could say I see him as a Soulful Scientist.

My soulful scientist was the first doctor to give me tangible proof of my diagnosis, and he assured me that none of my symptoms was in my head. His belief in me and his careful, unhurried listening lifted me from the purgatory of disbelieving my own body. He also gave me confidence, and helped me learn to articulate the medical landscapes through which we passed.

Recently my doctor let me know—very gently—that some of my discomforts would remain; they would improve with treatment, but they wouldn’t go away. “You might be at the point where you’re trying to fix the unfixable,” he suggested. My heart sank and I told him, “The hardest part of being a patient is developing patience.” He agreed and offered this story, “The way I develop patience is through birdwatching. Last week, I saw a swarm of birds land on an impossibly small limb of a marshside tree. And I wondered how could so many fit, and how could such a small limb support their weight?”

 At that moment I realized how I felt; exactly like those birds. How did he know that was the perfect image to offer me? I wanted to thank him for the compassionate way he delivered unwanted news, so after our meeting I added a caption to an image of birds crowded on a branch, and sent it to him. It said:

“When you're feeling alone

and shaken, take a breath

and remember,

You're not the only one

standing out on a limb.”

 And to my surprise, he replied—by sharing a haiku he had written while out on the marsh that day. It said:

Flocks of waxwings sweeping,

Sheer dives end on twigs,

Too small for so many birds. 

I had no idea he was a poet! With three little lines, I could imagine the dramatic effect of so many patients taking a sheer dive in health, and I could feel the insufficient support system that would bend under the weight of their crash landings. Twigs, too small for so many, too light to bear the impact. With that image in mind, I remembered I was not alone and that gave me more patience.

But the haiku wasn’t his only surprise. Doc and I had been meeting by phone (because he lives far away) and that limits one’s body awareness. So he decided it was time to let me know, in simple, clear  language, that I was not the only one out on that metaphorical limb. He revealed that he is unfixable too. He has Parkinson’s Syndrome, and while it had been under control for a long time, he was experiencing his third relapse. Last month he was not well enough to travel to a medical conference where he was the keynote speaker.

My first reaction was willful disbelief. How could a healer be in need of healing? How could this be? I needed more. So I asked, “How did you learn to live with what you could not change? How did you move from patience to acceptance?”

In a way, I was asking him to offer me a serenity prayer for the medically unfixed. Patience. Acceptance. Courage. Wisdom. Four words to live by, but I needed a fifth; an actionable word. When I expressed my frustration, he laughed and said, “I’m not sure if I told you, but there is another element tied to caring for the unknown…” his voice sparkling at the opportunity to share his secret weapon—“Doggedness. Churchill’s ‘never give up.’”

Yes, my soulful scientist had been demonstrating the healing power of dogged determination through the example of his own life—when one is limited in the physical sense, one can visualize instead. His honest admission of his struggle offered me encouragement that I too could adapt. And while his words were still fresh, I found myself wondering how often a physician’s inner dialogue might be at odds with their professional vocabulary, and how frustrating that must feel.

Rafael Campo describes the dichotomy between a physician’s inner and outer thoughts, between what he is obliged to share and what he would prefer to share, in his poem “What I Would Give.” In the three stanzas I’ve selected, he expresses this contrast:

“What I would like to give them for a change

is not the usual prescription with

its hubris of the power to restore,

to cure;”

 [...]

what I would like to offer them is this,

not reassurance that their lungs sound fine,

or that the mole they’ve noticed change is not

a melanoma, but instead of fear

transfigured by some doctorly advice

I’d like to give them my astonishment

at sudden rainfall like the whole world weeping,

and how ridiculously gently it

slicked down my hair; I'd like to give them that”

 I love how he describes hubris as part of his challenge, while at the same time hinting that his job can often feel boring and routine. I love how he expresses that attempting to transfigure fear with medical advice can seem inadequate when compared to the transfiguring beauty of nature. In this poem we can feel the depth of his compassion.

Once upon a time, healing could be conversational— soulful as well as medical. But in today’s world the opportunity for conversation is usually limited; although soulful doctors will still use their creativity to try. It’s as if they remain mindful of another timeless line from “Dead Poets Society”—“This is a battle, and the casualties could be your hearts and souls.”

 Once we realize our greatest tool for connection is our humanity, we’d do well to remember one more line from the film. “Medicine is a noble pursuit and necessary to sustain life. But poetry, beauty, romance, love—these are what we stay alive for.” And we can help ourselves do this by honoring the five pillars of our ‘unfixed’ serenity prayer: patience, acceptance, courage, wisdom… and dogged determination. In a landscape of medical uncertainty, these are the words that will guide our soul.

Link to Walt Whitman’s full poem “Oh Captain! My Captain!”

Link to Rafael Campo, MD’s full poems  “Cardiology” and “What I Would Give”

And special thanks to Ritchie Shoemaker, MD, for sharing his haiku and humanity.

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 Katharine Greener-Hage

I was born in Calcutta, India, where I was born with a rare form of Congenital Muscular Dystrophy called Rigid Spine Muscular Dystrophy, which is a non-progressive form of muscular dystrophy. When I was 3 months old, I was adopted and moved to the United States. I was not officially given my diagnosis until middle school, after having scoliosis. From there I went to see several specialists at John Hopkins in Baltimore and had two muscle biopsies. I also had to start wearing leg braces, a back brace at night for some period of time, and to go on bipap at night. All of these changes occurred during middle school, which made it especially challenging to go to many doctors and know I was different from others around me. It has been hard for others to understand that I will never be able to be fully independent or to do all the physical things that my friends and family members can do. But I always believed that I should still stay positive and appreciate what gifts and talents I do have.

My specialists at John Hopkins are knowledgeable and caring doctors who have continued to see me from youth to adulthood for monitoring and checkups. They are always there for advice or assistance by email or phone for any non-emergency questions, which has been especially helpful during COVID-19 since I am at higher risk due to my pulmonary/breathing issues due to my congenital muscular dystrophy. If I got even a mild case of COVID, we don’t know if my respiratory lungs would handle it okay without going into the hospital. We just don’t know how many risks I should take now. My doctors cannot answer all of my questions or decisions.

Growing up with Congenital Muscular Dystrophy has had a big effect on the way I emotionally and physically think about myself, and on how others often look upon me. I know by having this diagnosis I will always be different from most able-bodied people around me, and it’s hard at times to accept that. I do try stay positive and do the best to live my life and remember there are others out there dealing and living with other illnesses.

I have tried to stay positive and resilient, even though during COVID it has been hard for me to have stay home most of the time. It is hard for me hearing and seeing other people getting to go back to traveling, shopping, eating out etc. when I still have to be restricted to staying at home. But I have continued to keep in touch with friends, make art work and cards for others, do puzzles, watch sports and movies, spend time with my cat, and listen to music.

Even though I have muscular dystrophy I still am a smart, educated person and a hard worker who overcame several struggles growing up but was able to graduate from college with two BS degrees. I became fluent in ASL, living with my sister who is Deaf. But my muscular dystrophy has changed some of the goals and passions I wanted or would do if I did not have it, like living independently on my own, driving, having a full-time job, playing sports, and having kids. I discovered that full-time work was too hard for me to continue, but hope to find work in the future that is right for me.

Having muscular dystrophy has made it harder to be in relationship, connect with peers, and maintain friendships. I have not really dated or met the right person yet. I have some close friends that I can do activities with, but since I don’t drive and they work full-time jobs I can’t always see them, and with Covid-19 have to still be home, too. I was hoping to be married or living with a roommate by now, and not still with my family all the time. One of the hardest things about having muscular dystrophy is knowing I won’t ever be fully independent like my friends and family.

Spirituality has played a significant role in my life. As a sick infant born in India, I was baptized in the hospital because my parents did not know if I would live. I have attended church my whole life and Christian schooling with religion classes and youth activities and retreats. I like listening to Christian music and have attended some music events. I have a Minister who has been coming weekly in person or by phone to talk or just listen in times of need, another person I can talk to who is not a family member. I find it helpful when facing family issues or stressful times. I also have had pastors and friends visit me when I was hospitalized. Listening to Christian music makes me feel better on hard or lonely days. Sharing the word of God with my close friends is also comforting, adding to the good friendships in my life.

One of my fondest memories is from when I was a Muscular Dystrophy Ambassador at several events before Covid-19, such as a special dinner and silent auction in Maryland. I hope to continue to be a disability mentor or ambassador and share my story with others in the future.

In facing my muscular dystrophy, I have learned how important it is to me to show others that I am strong, positive, and important just like everyone else is, and stand up for myself. In sharing my experiences with others, I hope they might get a better understanding what it is like living with an illness.

Katharine Greener-Hage was born in Calcutta, India and adopted when she was 3-months-old. She was born with a rare form of Congenital Muscular Dystrophy (CMD), which is a physical disability that affects her stamina (walking and standing), strength, lung capacity and breathing. She currently lives in Maryland.

By Kate Breck

It's 2AM and I’m up for the third time since finally passing out at midnight. My spine, hips and arms are on fire and feel like they are in a vice. The muscle relaxer I took to put me to sleep can only do so much. I have severe chronic pain due to three autoimmune disorders. Mornings are the worst, as it is exceedingly difficult to move due to the pain, stiffness and never-ending fatigue, but I push through as I rush to get my daughter and myself ready for the day. As I struggle to get ready; every little movement brings more pain and by the time we are ready to go, I am wanting to get right back into bed. Some days I do not think I can continue moving, and I want to give up on life entirely. These are the moments when I remind myself that I am happier now, than I’ve ever been before. While the pain is near intolerable, it’s nothing compared to the pain I experienced throughout my childhood. 

Growing up as a little girl, I spent my entire adolescence wishing for one thing: a happy family. The kind that doesn’t hit, scream, or demean. The kind of family that doesn’t make you instantly cry as you step off the school bus because you know what hellish nightmare awaits you. I had given up hope at a young age that I would ever attain this dream. The endless cycle of abuse was bound to continue. I was certain I wasn’t going to make it to 18, anyway. I had no plan for adulthood, because why plan for something you will never obtain? 

I was wrong. Not only did I end up making it to 18, but I created an escape plan. I worked 60 hours a week cleaning vacation homes, mansions, camps, basically any building I could find, because that was all I was qualified to do. Every day while scrubbing toilets, I would dream about no longer having to clean 14 houses in 12 hours. I wanted a desk job more than anything.  

One day, one of my clients took a chance on me and gave me my first office job. This position led to another job, which eventually got me into healthcare, which I was always interested in. Those years I walked two miles to and from work, rarely had anything in the fridge, and even went some winters without heat, but at least I didn’t have to break my back and hands cleaning houses anymore. Even then I struggled to find myself and still didn’t value my life. 
 
When I was 21, I met a guy. He had the same sick sense of humor as I did, and – little did I know – he was battling his own inner demons. The first time we spoke, it felt like I had known him all my life. Still, I told myself there was no way I was going to be in a relationship. I wasn’t wired for that, and it wasn’t worth the pain. He had similar thoughts, and we decided it was best that way. 
 
Again, I was dead wrong. Our relationship was off before either of us knew what was happening. In the back of my mind, I asked: how I could allow myself to trust someone like this? What was I doing? I’m not supposed to get married or have children. I don’t know how to have a healthy relationship, let alone raise another human being. I’m not even remotely equipped…but why can’t I picture myself without him? Why did he have to ruin my plans of eternal solitude where I would never again have to rely on someone else or allow them to let me down? Against my own judgement, I decided to take a chance on him, and myself. A couple of rough years passed, and we got married. One year later, our daughter was born. 
 
Finally, for once, I was right. We struggled as young couples do, but we also were two kids with a lot of trauma that was never unpacked – a recipe for disaster. We worked opposite shifts for many years so that one of us would always be home with our daughter, which meant we were barely making it mentally and financially. Shortly after having our daughter, I was in severe pain constantly and extremely fatigued. Every joint, bone and muscle in my body hurt in a way I hadn’t ever known was possible. I honestly thought I was dying.  

Starting when I was 25, I saw many doctors and had so many tests done with no explanation. I was 29 when I was finally diagnosed with an autoimmune disease seronegative rheumatoid arthritis which ended up turning more into a psoriatic arthritis diagnosis. Most recently, lupus has been considered as well.

I believe these autoimmune diseases came to be partly because of genetics but also due to the traumas I faced at a young age. There has been research that childhood trauma can be a trigger for many people with autoimmune diseases, and as a parent this scares me. I can’t stop genetics from passing these diseases to my daughter. Every time she loses balance or has a pain in her legs or arms my heart drops and I instantly picture her going through the same struggles I face. The one thing I can do, is to make sure she doesn't face the same struggles I faced as a child. My husband and I give her the safe home and stable household that we never had. If my diseases have taught me anything; it’s how important love and stability are. 

Since my diagnosis, I’ve had about 15 orthopedic surgeries, hundreds of infusions, injections, staph infections, influenza several times that almost killed me, shingles, Covid-19, and countless other ailments due to being on immunosuppressants. As if that wasn’t enough, my husband has his own health struggles physically and mentally, and so does our daughter. 

Throughout all of this, we somehow worked our way up at both of our jobs and on my 34th birthday in 2020 we finally did something we had been actively trying to do and dreaming about the past decade. We purchased not only a house, but our DREAM house. It’s been over a year now since we moved in, yet we still find ourselves waking up almost every day and asking each other if this is a dream. How did two once lost souls get here? Perseverance? Stubbornness? Luck? I’m sure there are plenty of people that wouldn’t understand how something as basic as a house and a functional family could be considered “making it”, but for us it is everything. 

I’m still not sure how nearly 14 years have gone by since that day two dysfunctional souls met, but I constantly think about how much everything would be different if neither of us took a chance on life. I truly believe we could have easily ended up dead or in prison. Even worse, I’m afraid we even could have repeated our families’ mistakes and continued the cycle of abuse and neglect. The odds have always been against us, individually and together, but I’m grateful to be able to say that my wish came true. I broke the cycle and I now have that happy family I once wished for so long ago as a little girl, and I will never take them or my life for granted again. My declining health and the relentless progression of these diseases cannot keep me down, because my dreams have already come true. 

Kate Breck is a surgical coordinator and has worked in healthcare for nearly 15 years. She is a mom of one and enjoys running in 5Ks yearly, particularly "the Dempsey Challenge" founded by Patrick Dempsey in Lewiston, Maine. Read more from Kate on her blog.

During nurses month, on June 22nd, 2022 we honored the stories of Nicole Horigan, RN, BSN, Clinical Nurse and John Bagley (patient). They met during John's first visit for a clinical trial treatment for prostate cancer and their special relationship is a testament to what can happen when we allow ourselves to be vulnerable and open.

During nurses month, on June 16th, 2022 we honored the stories of Lauren Aloisio, RN, BSN, Clinical Nurse, PACU and Jonathan (patient) and Nancy Gardner (patient's mother).

The bond that exists between Lauren, both a nurse and cancer survivor and her patient Jonathan, a cancer patient, is truly remarkable and a reminder of the tremendous power that connecting and listening to one another can have on our ability to heal.

Segment 9 in our series Soul Chronicles for the Chronically Ill

by Shaler McClure Wright

Health Story Collaborative · Tossed In The Hopper Of Cultural Pain

Introduction

You’re listening to episode nine 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 monthly audio column. My name is Shaler McClure Wright and I’m a writer/creative living with Chronic Inflammatory Response Syndrome.

Story - Tossed in the Hopper of Cultural Pain

When I think of a soulful approach to life I think of seeking beauty. Calling attention to beautiful moments as they unfold, or reflecting on those that may have passed without notice. But right now I’m immersed in its opposite; something shadowy and so ominous it can’t be ignored. So here is my warning—if you’re looking for butterflies, glitter and light, you won’t find them here today. Because before I can make my way back to the restorative path of all-things-good in the world, I need to acknowledge the looming presence of current events that threatens to eclipse the natural light of beauty and soul.

We’re in the grips of a pervasive cultural pain to which no one is immune. It’s uncomfortable, unsettling and it’s spreading. When we try to discuss it publicly, we strain for civility, and find ourselves having to avoid words that might be considered inflammatory, and sometimes that leaves us without words at all.  So we’re stuck in a cycle of speak/regret/retreat, and each round of failed conversation creates more pain.

I’ve chosen a name for this condition. Sanitation Syndrome.

I call it Sanitation Syndrome because ironically, the more we try to sanitize it, the more we enable it to grow. By sanitize I mean making light of divisive comments or avoiding conversation about it altogether. And if left unchecked, Sanitation Syndrome will gather strength, brewing in the background, until all of a sudden we find ourselves steeped in a national infection.

How do we learn to recognize it? Sanitation Syndrome occurs when words are weaponized to divide us, and once divided, we can no longer speak the same language. The best word to describe Sanitation Syndrome is toxic, and our well-intentioned attempts to contain it actually end up making things worse, by compressing it into something smaller, more dense and more toxic. Sanitation Syndrome is spreading through every corner of our country by seeping into our bodies with just enough heat to smolder, like a fire that burns from the inside out.

In order to reflect on this national illness (though I’d still prefer to reflect on beauty), I’ll choose an image to represent the aspects of Sanitation Syndrome that are hardest to visualize. Not surprisingly, I’m choosing a piece of sanitation equipment—a garbage truck—to represent the vehicle for both its containment and growth.

Imagine one big national garbage truck making rounds on a sweltering summer day with the purpose of containing all things exposed to Sanitation Syndrome—including people. It’s like we’re all being unceremoniously tossed in its hopper, with its giant compactor pressing us ever closer together, until finally we’re squished into one big brick of unrecognizable waste. And once we’ve been reduced to garbage, we begin to simmer with a smell most aptly associated with toxic stew. We think our lives will be less messy if we compact the trash.  But as it turns out, compacted trash takes up less space, but it’s no less nasty. It’s simply more concentrated.

I admit, I’ve tried to insulate myself from the reaching arms of our national garbage truck, but in doing so my world has grown smaller and smaller. And that’s not good. Truth is, Sanitation Syndrome is fueled by the pain of despair, and no amount of padding is thick enough to insulate us from its friction or burn.

It’s not that I don’t care about the issues we face—I care deeply—but like many of you, I need to balance awareness with health. And right now, to be honest,  I’m failing. When I clench with instinctive resistance, my desire for self protection feels like a vice tightening around my body. So insulation isn’t an option. We need to face this sickness head-on, or we might find ourselves wrapped in a vice and crushed in a hopper all at once.

When our lives have been compacted into one big brick of toxic waste it leaves us gobsmacked—shocked—and unable to think clearly.  It’s hard to take action. Like Bill Murray’s conundrum in “Groundhog Day,” waking up again and again to the same problems, we find ourselves stuck in the throes of recurring gobsmack attacks.

So how might we gain perspective about this predicament? By educating ourselves as much as we can. Think of it this way, learning about Sanitation Syndrome is not so different from hearing a diagnosis we don’t want to hear, or conducting research on a medical condition we’d rather not have—so perhaps we’re better prepared to do this work than we realize.

There’s something potent about the collective endurance of cultural pain, and the possibility leaves me wondering, “If enough of us can endure it, can we also clear it? Can we banish Sanitation Syndrome from our lives?”

I’ve spoken before about the transformative potential of personal experience and I’d like to share an example. Just yesterday I had an experience of uncontrollable trembling, for no apparent reason other than hearing the news stream in the background while I was cooking. Like the fire of Sanitation Syndrome—burning from the inside out—my trembling began as an invisible inner tremor. But eventually it got so bad I couldn’t hold a knife steady enough to chop vegetables.

Soulfully speaking, trembling can indicate a profound experience, transformation on a cellular level. Our body signals us with a combination of tears, rage, trembling, or dizziness. We might feel disoriented, but it’s actually a process of reorientation, and in the case of Sanitation Syndrome, a rejection. I believe a collective shake-out may be the best way to begin the process of collective healing.

In his book “Healing Trauma”, Dr Peter Levine suggests, “People do, in fact, possess the same built-in ability to shake off threats that animals do. I have found that, if given appropriate guidance, human beings can and do shake off the effects of overwhelming events and return to their lives.”

So if the first step is a shake-out, then the second step would be a reconstitution. How do we begin to transform our toxic stew into something more palatable?

Transformation is a complex and exhausting process, some of which is within our control, but much of it is a mystery, perhaps even requiring a leap of faith. And like our slimy, compacted waste, it can be messy. As an example, let’s look at the metamorphosis of a butterfly.

In the Scientific American article “How Do Caterpillars Turn Into Butterflies?”we learn that “first, the caterpillar digests itself, releasing enzymes to dissolve all of its tissues. If you were to cut open a chrysalis, you’d find a soupy meltdown of the caterpillar's body.”

Caterpillar soup contains highly specialized imaginal discs that undergo rapid cell division, differentiation and growth. Eventually these disks become imaginal cells that make up the physiology of a butterfly. The mystery of a butterfly’s transformation is rooted in these imaginal cells. (And of course I see a connection between the words imagination and imaginal.)

Evolution biologist Dr. Elisabet Sahtouris refers to the connection between the current state of our country and the birth of a butterfly in her book “EarthDance”:

“If we see ourselves as imaginal discs working to build the butterfly of a better world, we will understand that we are launching a new ‘genome’ of values and practices, to replace that of the current unsustainable system. We will also see how important it is to link with each other in the effort, to recognize how many different kinds of imaginal cells it will take to build a butterfly with all its capabilities and colors.”

So what do you think? Can we weather our Sanitation Syndrome garbage truck ride with the transformative grace of a butterfly? I warned you there would be no butterflies in this chronicle, and there aren’t. Yet. But we can visualize the possibility. And so I leave you with this vision of emerging beauty— Imagine how precious it would be to gather for a conversation that’s free of disinformation, flowing with words as beautiful as the first unfolding of a butterfly's wings.

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

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