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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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).

The day I learned that I needed hip surgery, I cried tears of relief.

On September 23, 2013, I was playing in a JV field hockey game when all of a sudden, after passing the ball to a teammate, I felt something go wrong.  It was… a pop?… a snap?… a tear?… and it came from somewhere in my left backside.  I could not identify precisely where—in my lower back, upper hip, or glute—I felt it.  As I crawled off the field, I struggled to assemble an explanation to provide the athletic trainer.  To this day, I cannot say exactly where it was or what it felt like, but I do know, as the past three and a half years have proven, that something was not right.

For the first eleven months after my injury I was diagnosed with a torn muscle in my hip, but physical therapy did little to relieve my pain.  I began to see an orthopedic surgeon specializing in hips, who saw nothing notable on my MRIs and encouraged me to continue treating with physical therapy.  After months and months of hard work without relief from the pain, I started to worry that I was somehow doing it wrong.  Finally, a new MRI of my hip, this time done with contrast dye, showed torn cartilage in the joint.  This would require surgery to repair.  When, after a year of persistent and unidentifiable pain, as well as numerous consultations with hip specialists, a surgeon walked into my examination room and claimed that he knew exactly how to cure my pain, I sat on the table in front of him and sobbed.  The recovery would be long and painful, but at least it would mean I was healing.  At this point I would have done anything.

After my surgery, I completed nine months of physical therapy to rehabilitate my hip and the rest of my body.  But as the physical therapy came to an end, I noticed that something still felt off.  I occasionally had that same original pain; it was a pain distinctly different from the normal soreness of post-operative recovery, and I was all too familiar with how it felt.  Worried that the operation had failed, I tried to ignore my discomfort for a year and a half.  I was terrified that if the surgery had not provided a cure, then nothing could.  This past December, after the pain suddenly grew much worse, I finally decided that I could no longer ignore my fears.  I scheduled a follow-up appointment with my hip surgeon, who referred me to a spine center to look for other possible causes for my pain.  To this day, my doctors and I are still searching for its source.

My pain taunts me.  It comes and goes.  It moves from place to place.  It floats, it hovers, over my mind and body, cruelly defying articulation.  The English language offers a myriad of terms to describe pain: sharp, dull, burning, throbbing, sore, stiff, tender… the list goes on.  And yet, my three-and-a-half-year search for the words to most accurately capture my experience has left me with the following clumsy explanation: most of the time it does not feel quite like a throb, but more like a series of discrete pinching and tugging sensations with each movement of my lower body, located somewhere between my sacroiliac joint and L5 disc; other times—when I sit or stand for too long—it aches across most of my lower back.  Sometimes, though, the pain deviates from both of these descriptions.

Without looking at a calendar or an MRI report, I can list off the top of my head everything I have done in the past three and a half years to try to relieve this pain—five MRIs, a CT scan, countless X-rays, six specialists, two chiropractors, two injections, and one unsuccessful surgery—including the dates on which most of them took place.  But, despite my three and a half years of familiarity with this injury, I cannot explain how it physically feels.

Three years ago, I spent my time training for the sport I loved, pushing through the pain of conditioning and doing everything I could to prevent the pain of injury.  Now, I spend my time catering to physical pain, altering my movements and avoiding certain motions altogether.  I prepare for each doctor’s appointment by obsessively practicing my story—the words I’ve carefully picked to best convey how the pain feels—in my head.  I brace myself for the disappointment of watching yet another medical professional fumble for a diagnosis.  And I desperately hope for the opposite: I hope that one of these appointments will lead to definitive answers.  I hope to one day again cry tears of relief like those I cried the day I believed in the miraculous powers of hip surgery.

This piece was originally published in The Medical Humanities Journal of Boston College, Volume 3, Issue 1, Spring 2017.

Evelyn Caty is currently a sophomore at Boston College majoring in Biology and planning to minor in Medical Humanities.  She works as an EMT for Boston College Emergency Medical Services, and hopes to pursue a career in health care in the future.