Soul Chronicles | Deepening into Soulfulness: When Illness is a Threshold
Segment 11 in our series Soul Chronicles for the Chronically Ill
by Shaler McClure Wright
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
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