By Shaler Wright

Every year I make the same wish on my birthday. No matter how many candles there are to blow out, I close my eyes, take a breath and wish — to sleep. Deeply, peacefully, without pain, and without medication. Hamlet’s words ring out like a hopeful refrain in my mind. “To sleep, perchance to dream” is my mantra to self-charge when endurance runs low.

 Doctors don’t know what to make of me. Such a bright, well spoken, friendly woman. But those widespread symptoms? That intermittent pain, migrating aches? And those inconclusive test results!  “She’s so high functioning in daily life, what could possibly be wrong?”

My complaints can’t be neatly gathered under a classic diagnosis, so it’s been repeatedly suggested that my discomforts are a fluke, not really so bad, the result of stress, or dramatic imagination. And then I’m offered that familiar, dismissive smile that lets me know I’ve come to the end of another road. I brace myself for what comes next... “Have you ever considered therapy?”, they ask. I sigh quietly, “Yes I have, but I’m willing to try again.” And snip-snap, just like that I’m referred to a psychiatrist to learn how to become less ill. This is the repetitive cycle of my health story.

 After thirty years and a cornucopia of psychiatric medications that made me feel worse, I learned that the best way to feel better is to stop telling doctors I don’t feel well. It’s not worth the risk, the humiliation or shame. And it’s definitely not worth the side effects of the latest and greatest pill, or the months lost while trying to be patient and give it time to work.

I’ve given decades! So, lack of patience is not my problem. Nor is lack of compliance. My problem is that doctors — through no fault of their own — haven’t been asking the right questions or ordering the right tests. But I didn’t know that at the time, and I hadn’t yet learned to trust my own experience of my body.

 Instead, I learned to believe that I am the problem.

“I’m a wimp. A complainer. Dramatic”

And that didn’t feel good.

So I adapted. I trained my brain to tolerate pain and label it as merely discomfort. I diminished my feelings to the point of dissociating from my body. And I learned to separate my perception of pain from my experience of pain. Distraction became my greatest ally. “If I can’t make the pain go away (and since I’ve been told it isn’t even real), I’ll just ignore it.”

 Hmmph.

 The problem with that technique is that you lose touch with what is real and what is not. And you start to feel like a fake, like you’re the emperor with no clothes, but the only one you’re fooling is yourself. And you begin to doubt yourself, not just in relation to your health, but also your opinions on other matters. You give up your own sense of true north and are left without a personal compass.

 Who can you believe, who can you trust, when you can’t even trust yourself?

 For me, the answer came unexpectedly. Like my own personal Mary Poppins riding in from the east with the winds of change: A new doctor.

 This doctor is different. David London is a psychiatrist (ack!), but also a Functional Medicine MD, trained in Chinese medicine and Buddhist meditation. For two years he quietly listened to my weekly word-dumps without suggesting medication. Instead, he taught me to breathe. And visualize. I learned to visualize comforting space at night, like a cloud around my pain. And it works well enough to let me sleep for a few hours, enough to be highly functional the next day. It’s the best I’ve felt in years, but my Mary Poppins-doctor believes I can feel even better, and he continues to contemplate the puzzle of my health.

 You see, Dr. London has this theory that we all have an inner bucket where bad stuff is stored. And for some people, the bucket is never filled. But for others, for reasons we may not fully understand, their bucket gets filled to the brim and eventually overflows. And this overflowing muck-bucket causes illness.

 I immediately envision a steamed lobster with a belly full of green tamale and tell him it’s disgusting to think of myself as full of toxic waste! He reassures me it’s not because I’ve done something foolish or wrong. It might even be genetic. And there’s a test that can prove it.

 I ask to have genetic testing and the results show that I am indeed one of the lucky few who has trouble clearing certain toxins. I don’t know how to feel about that. I feel both validated and discouraged. Ugh. It sounds like a hopeless predicament and I visualize the possibility of sending myself off in a canoe to disappear over the horizon.

But Poppins-doc has other plans. He encourages me to familiarize myself with the pioneering work of research physician Ritchie Shoemaker. Though sometimes deemed a controversial character, Dr. Shoe’s abundance of published papers and long list of appearances/testimonies before congress and parliaments are enough to convince me to pay attention to his ideas. That and the fact that he’s a really nice guy.

 Ritchie Shoemaker believes that some people have a genetic haplotype that prevents them from clearing toxins. And over time these toxins build up, and our bodies try to fight their effects in various ways, and some of these ways wreak as much havoc as the toxins themselves. All kinds of crazy stuff can happen — headaches, sweats, insomnia, chest pressure, foot cramps, ringing ears, aching hips, swollen ankles, shortness of breath, and most debilitating of all — cognitive dysfunction.

Yep. Brain Drain was the big one for me. When I first met with Dr. Shoemaker, he confirmed that cognitive issues are often the last straw for highly functional patients like me. We cope and adapt and carry on, thinking of our body as an obstacle to overcome. But when illness begins to take our mind, we grapple with the possibility that perhaps we are outmatched. No amount of visualizing will get our brains back. He said, “I’m sure you’ve been told ‘it’s all in your head.’ Well guess what? It is! And we can heal it.”

 Wowza.

I’ve been feeling validated for about two months now. My illness is real and according to the tests ordered by Shoemaker, my results indicate I have Chronic Inflammatory Response Syndrome (CIRS). CIRS is a multi-system, multi-symptom illness, not yet recognized by health insurance providers, but increasingly relevant in today’s world of bio, chemical and environmental toxin overload.

 I’m feeling hope that I may have finally found my tribe. Patients like me. It’s not a tribe many would choose, but for those of us who have had it thrust upon us, we are grateful to be named and recognized. My road to wellness is still long, but at least now I have a plan. And thanks to Poppins-doc and Dr. Shoe, I may just get my birthday wish in a year or two.

———

Shaler McClure Wright is fascinated with the mysteries of creative process and the healing power of creativity. She’s worked as an actor, writer and educator for more than 40 years, and lives in southeastern Connecticut with her son and husband.

www.shalermcclurewright.com

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On December 5th, at a live storytelling event hosted by Health Story Collaborative and WBUR CitySpace, we heard stories from three courageous women parenting in the face of life-threatening illness. You can watch the video of the event here. 

Lila, 45, is a psychotherapist by training and the mother of two daughters, ages 8 and 11. She has stage 4 lung cancer and each day she is practicing the difference between “choosing to live rather than trying not to die.”

Caroline, 35, is a writer and the mother of two sons, ages 4 and 7. She is living with glioblastoma—the most aggressive form of brain cancer—and was given a life expectancy of one year when she was diagnosed in 2017. She used to only write cookbooks but just published a children’s book with her sons in mind. Her message: “Whether or not Mommy’s body survives, my love is permanent and will shape them forever.”

Betsy, 42, a chemistry professor, lost her husband Chris to glioblastoma - the same cancer that Caroline has - in January 2019. She has not only been grieving his loss, but forging ahead as a now single parent 

What questions have they been grappling with? How do they care for themselves and their children? What lessons have they learned?  Their wisdom transcends illness and parenting and is relevant to all of us as human beings.  

There are days when dealing with this chronic illness just becomes too much and I simply want to curl up in a corner and wait for it to end.

I’m tired of all the doctor appointments, being sent from specialist to specialist, trying to explain over and over again the many symptoms I’ve been experiencing every day for the last 5 years.

I’m tired of pain, of weakness, exhaustion, difficulty breathing, night sweats, lack of sleep, trouble swallowing, muscle spasms, twitches and involuntary kicks and flinches, and all the other symptoms that have joined the party.

I’m tired of trying medication after medication, hoping to find one with minimal side effects or allergic reactions.

I’m tired of dealing with the insurance company and explaining to doctors why I can’t work. I’m tired of feeling like I need to convince everyone that there is something very physically wrong in my body when to the outside world I look normal.

I’m tired of doctors giving one diagnosis, then another, doing their best but not able to provide any words of comfort. First, they say I likely have ALS, then Amyloidosis, then Isaac’s Syndrome, then some other horrible incurable disease but no one can be sure yet, so I’m told to wait to see how it progresses. I’ve waited and I’ve waited, it’s been 5 years, can someone just tell me what the heck is going on?

I’m tired and weary. These are the thoughts that rise to the surface of my mind from time to time, and I’m starting to feel more comfortable with that now. I’m learning to give myself space and permission to feel what I feel when I feel it.

For me, this means…

• Allowing myself to feel sad on days when it’s really windy and I long to be windsurfing

• Acknowledging that I really miss having a healthy body that’s able to participate in all of the sports I love    

•  Having the courage to say no when asked to join friends for an evening out, trusting that they will ask again and not give up on me because of my illness

• Making peace with the reality of a life that is largely lived indoors, and being much less active than I would like

• Admitting the feelings of guilt I have about not being able to work and not advancing in my career

• Accepting the feeling, whether real or created in my own mind, that I’m being judged for not trying hard enough

•  Allowing myself to feel angry and frustrated because there is no end to this illness “treadmill”, and there is nothing I can do to change it.

I don’t have to save myself from these uncomfortable emotions by plastering on a brave, happy face when I feel like crap because let's face it, being chronically ill sucks. I don’t stay in this headspace all the time because I don’t feel this way all the time, but I do let these thoughts and feelings have their way with me when needed, knowing that I can always find my way back to a place of happiness and contentment.

Discovering the Buddhist art of being present to life just as it is, completely free from judgment, has been paramount in helping me learn to stay open to all of the thoughts and feelings that arise through chronic illness. The practice of remaining open-hearted toward all of my experiences has reduced my resistance to the various difficulties I face and has given me the ability to unconditionally accept the circumstances of my life. Viewing my challenges with kindness and treating myself with compassion empowers me to make good choices for myself and helps me think creatively about the life I want to live.

Self-compassion has stretched me into learning how to accept help and kind words from friends where earlier I would have tried to go it alone because I didn’t want to show weakness or be a burden to anyone. I’ve also learned that when I’m having a pretty rough time physically it’s okay for me to say, “I don’t have to have a ‘productive day’ today; today I’m watching Netflix because that’s the very best and kindest thing I can do for myself."

This willingness to kindly do what my body requires by accepting help or resting for weeks on end is no longer something that makes me feel less-than or weak; it provides what I need for living a full life. I’ve become truly happy again and am loving life and all the possibilities it holds, despite my illness and its restrictions.

Self-compassion has given me what I need to look at my life and situation in a way that says, ‘My illness isn’t who I am; I’m someone who still has a lot to offer to the world’. I’ve become excited about my life and what may be on the horizon instead of being fearful of what might happen. My illness has benefited me by giving me the time for some much-needed self-reflection, which has led to a greater insight into who I really am, how much I’m loved, what I love, and the many ways I can still add value to the world. It feels a little like I’ve been given the gift of a new life.

While I can no longer do many of the activities I love to do, like windsurfing, tennis, golf (just about any sport really), I have begun to discover that I am much more than the sports I played or the career I had. I have a wide variety of loves in my life that previously I either ignored or just hadn’t noticed. But because my health has thankfully required me to slow down, I am discovering them now.

I am so much more mindful of the beauty, life, and love I see all around me every day. I enjoy it in the deep and meaningful conversations and experiences I have with my wife, I experience it in the wonder of nature and the myriad shades of green that bloom at the beginning of spring, I see it in the care-free dogs that are affectionately taken for walks beneath my balcony every day, I hear it in the laughter and joy of the children playing at the nearby school, and just as nature and dogs never seem to worry about what’s in the future, these kids have yet to discover that worrying and looking ahead is a “thing”: they are just revelling in each moment.

Learning to live this way has not eliminated my illness and symptoms, but it has started to remove the suffering caused by focusing on what is wrong, what I can’t do, and what could go wrong. I have slowly found myself realizing that, although I’m not healthy, and physically I sort of feel like I’ve been hit by a bus every day for the last 5 years (and that bus always seems to back-up to hit me one more time just to be sure I don’t walk away without a limp - I hate that dang bus), I’m not suffering anymore. I’m learning to live life defined by what I love, not by my illness.

Because of poor health, my career may have stalled and my physical abilities may be limited, but my capacity to be curious, to take a deep inner look at myself, to learn self-compassion instead of self-pity, to try new things that I would have been too fearful to attempt in my old life, to be willing to take chances like I’m doing right now by writing, have flourished.

At 51-years-old I’ve finally realized that my purpose is to keep discovering what I love, doing what I love, sharing that love with others, and showing those closest to me that they are truly and deeply loved. Chronic illness might have the ability to impose boundaries on my life but it will never be able to set any boundaries on the things I love.

I find myself no longer waiting for my illness to depart and my life to arrive; I truly have a life I love right now.

Within the boundaries set by a mysterious neurological condition, Chad loves spending his available energy enjoying good food, getting lost in different worlds through writing and reading, strolling in the sunshine, watching sports and being an armchair quarterback. He lives on the Canadian Prairies with his wife (who is also managing her own chronic illness--what a fine pair).

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

About Derek Carbone:

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

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

What makes up the world, for me, is language. While the natural sciences contend that the world is made of matter—atoms, molecules, cells, genes, tissue, organs—I believe that language accounts for what happens between people. We don’t just pass down genes. We inherit the words we speak. We don’t just care for our own bodies. We care for our own stories.

I arrived at Boston College certain that I would study English and love it, but after a year of introductory English classes, I felt entirely uninspired. What was the matter? When it came to the stories, what mattered?

During sophomore year, something happened in my own story. I stumbled across a news article about a new interdisciplinary Medical Humanities minor. Medical humanities is a field devoted to the humanistic and cultural study of medicine, caregiving, illness, disability, and representations of the body; it values the interconnectedness and complexity of these issues, looking at them from different perspectives in order to better understand them. These topics have always been present in my life: my sister works in a lab, my twin is studying medical imaging, my mother is an EMG technician, my parents cared for aging and ill relatives and friends.

Could medical humanities synthesize my love for literature and my interest in caregiving and healthcare?

Sophomore fall, I attended a symposium at Boston College on Genetics, Narrative, and Identity. Contributors to The Story Within, a collection of essays on genetic diseases and the complex life-stories and decisions surrounding them, captivated me with their candor, strength, and insight. The day culminated in a writing workshop and keynote address given by Rita Charon, M.D., Ph.D., who founded the field of narrative medicine. She made clear to me what it means to be present for another person, in sickness or in health.

I decided to enroll in an introductory medical humanities course. In the texts we studied and the conversations in which we engaged, the complexity and high stakes of the issues—genetic testing, public health, representing disability and disease—marveled me.

The most compelling text to me was Elaine Scarry’s The Body in Pain. She writes: “Whatever pain achieves, it achieves in part through its unsharability, and it ensures this unsharability through its resistance to language.” 1 Pain is that which cannot be put into words, cannot be represented; so specific, so individual, it falls outside of any system of communication. At the same time, pain is perhaps the most difficult thing for a listener to believe. If pain really did destroy language, dissolve the relationship between two people, what did this mean for me and my world of words?

But, more importantly, pain calls us to bridge the gap between individuals. Pain calls us to create something, to listen with empathy, to trust, to acknowledge the other, to bear witness. In sickness and in health, in pain and in pleasure, our words and our stories are what humanize us and connect us.

A friend of mine recently shared with me that she has been dealing with diabetes since she was two years old. She is one of the most driven, most involved students I know. I felt so fortunate and honored to hear her story and her insight. Her story and the conversations that followed strengthened our friendship.

In college, the stories of chronic illness or disability are so often untold and unheard. Built environments and institutional policies, sometimes established without consideration for those who have chronic illnesses or disabilities, can intensify these potentially isolating experiences. Laurie Edwards, a writing instructor at Northeastern University and a person with chronic illnesses herself, writes on the state of colleges for students with chronic illnesses or disabilities, shedding light onto the ways in which colleges fail these students.2 Students, faculty, and administrators should acknowledge these students and their individual needs. Making accommodations for these students and respecting their stories for these students will ensure that higher education remains accessible to all people—sick or well, disabled or able-bodied.

On a college campus, it is easy to assume that everyone is healthy, with crowds at the gyms and a vibrant and energetic student population. At the same time, illness is easily normalized. What college student hasn’t been exhausted? Who hasn’t caught a cold in a residence hall? We must heed narrative medicine’s call to honor the stories of health and illness in each individual, to acknowledge its specificity, and to listen with care and empathy. With this kind of attitude, we can perhaps see that the campus of the healthy and the campus of the ill are not different places: they’re the same.

Over the coming months, I will facilitate the sharing of stories about college students living with chronic illnesses or disability. Stay tuned for future features from me on these issues.

Christopher Kabacinski is a rising senior at Boston College, where he is studying English and Medical Humanities. He is a founder and the editor-in-chief of The Medical Humanities Journal of Boston College, a student-run journal featuring undergraduate work on issues such as medicine, health, illness, disability, bioethics, and representations of the body. Currently, Chris is working as intern at Health Story Collaborative. He is developing a project about college students with chronic illness or disability. If you or someone you know might be interested in sharing his or her story of health, illness, or disability, please contact Chris at healthstorycollaborative@gmail.com.

Resources:

1. Scarry, Elaine. The Body in Pain. Oxford University Press: New York, NY, 1985. Print. 4.

2. Edwards, Laurie. “When It Comes To Chronic Illness, College Campuses Have A Lot To Learn.” WBUR, Cognoscenti: Boston, MA. 5 March 2014. Web. Accessed 16 June 2015.