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

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

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

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

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

BioSite: https://bio.site/soulchronicles

by Shaler McClure Wright

 Segment 8 in our series Soul Chronicles for the Chronically Ill

Health Story Collaborative · Soul Chronicles: The Bittersweet Pain Of Letting Go

Introduction

You’re listening to episode eight 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 - The Bittersweet Pain of Letting Go

When life is changing, it can be hard to stay connected with your feelings. And for me, it’s especially difficult when a big change is happening slowly over time. Sometimes it takes a certain moment—an image etched into our imaginations—to trigger awareness and orient us to the deeper truth at the heart of the change. Last week I had such a moment. 

Every spring we take our boat out of winter storage and prepare her for the season. And when she’s finally in tip-top shape on launch day, we set off on a maiden voyage across Long Island Sound to circumnavigate Fisher’s Island. Some years are colder or foggier than others, but regardless of the weather it’s always been a joyful tradition, celebrating the start of the summer fun.

Last week my husband and I layered-on the foul weather gear and headed out. I took my usual seat in the bow. It was chilly so we had the Sound to ourselves, seeing only two boats in the distance while crossing. Normally that would fill me with an expansive sense of freedom and peace. But instead, I found myself feeling trapped, tight-chested and choking back tears as we approached the island. Normally the beauty of this island gives me a sense of safety, but this year, as we rounded the western tip, my heart felt like it was being sucked into the sea, never to surface again.

What was this pain about?

Like most people who live with chronic illness, I’ve developed techniques to cope with physical pain. But I wonder—can I use those same techniques to cope with emotional pain?

My only child is graduating from high school this year, marking the beginning of his life as an adult, and the end of his life as a child. It’s a threshold experience—as described in last month’s Soul Chronicle—and a time for joy and celebration. But for me as a parent, with that joy also comes the bittersweet pain of letting go.

Susan Cain, author of Bittersweet; How Sorrow and Longing Make Us Whole, describes this beautifully, “Bittersweetness is a tendency to states of long­ing, poignancy, and sorrow; an acute aware­ness of passing time; and a curiously piercing joy at the beauty of the world. It recognizes that light and dark, birth and death—bitter and sweet—are forever paired.”

I believe many of us who have made peace with chronic illness have also embraced the beauty of life’s bittersweet pairings, but we may not know it. I didn’t know until reading Cain’s words. Now I can see that each time I’ve needed to muster courage to deal with a new prognosis, or face the loss of some aspect of life-as-I-knew-it, there’s been an element of bittersweetness leading me forward to acceptance.

Today I want to imagine my way through the bittersweet challenge of letting go of my role as protector of my child, in order to embrace a new role as his liberator. And to do that, I”ll return to my story of annual maiden voyages in our motor boat.

Boating is the glue that holds our family together. We love to escape the daily grind and commune with nature at sea. Preparing a boat for her maiden voyage is a labor of love, and in this way it’s similar to preparing to launch a child into independence. If you’ve maintained a sturdy vessel, then she’ll be able to make her way through the sea because she’s solid and seaworthy; so too, if you’ve raised a resilient child, he should be able to make his way in the world on his own.

My son Jasper was an infant the first time we took him on a maiden voyage. To mark the occasion, we bought a large marine bean bag and placed it between our pedestal seats so he’d  be nestled safely between us while we were under way. It takes about an hour to circle Fisher’s Island and we thought that would be long enough for his nap. But no! He just loved the purr of that engine! That year, he was so comfortable and in such deep sleep we had to go around the island twice to avoid waking him. And even though the waves were choppy, he was safe and cozy in our care. The image of him sleeping in that bean bag wearing his red knit cap, clutching a pair of orange velour kitties–one in each hand–is one of my favorite memories.

At age six Jasper was a bundle of curiosity, and finally old enough to appreciate our self-guided Fisher’s Island trivia tour. On that year’s maiden voyage, we revealed to him that Fisher’s Island was chosen as the location for a feature film. On its wild and windy west side, there’s a big white shingled house with a wide wrap-around porch and sea-gazing gazebo, where the movie The World According to Garp, starring Robin Williams, was filmed.

The property includes a small rocky beach, where the wave action can be quite rough. In the movie, Robin Williams calls out to his young son, who is swimming alone for the first time, “Watch out for the undertow!”—a helpful warning from a concerned parent. But that’s not what his son heard. His son heard ‘watch out for the undertoad,’ and from then on he was terrified of a dangerous frog lurking beneath the surface of the water waiting to pull him under and suck him out to sea. Jasper laughed with delight (and perhaps a slight air of superiority) at the idea of such a silly, superstitious child.  And his confident smile while staring at that rocky beach that day is another favorite memory.

When compared with memories from those two maiden voyages, the images from this year’s maiden voyage are stark. If I were to hold all three memories  side by side—like a triptych—in my imagination, in the first frame I’d see two smitten parents beaming over their helpless, dependent infant; in the next I’d see two proud parents beaming over their clever, confident kid; and finally I’d see two lost parents scanning the coastline for something that’s missing—the continuing presence of their only child.

Ack! How depressing! How might I reframe this triptych?

Let’s take a deeper look at that memorable line from the movie—“Watch out for the undertoad.” The first time I heard it, I simply thought it was funny, but over the years,  layers of questions beneath the words have begun to reveal themselves. Such as… How often is a cautionary phrase from a parent misunderstood by a child? And…How often do we parents, in our desire to keep our children safe, cause more harm than good with our advice?

Author John Irving knew this line would have the greatest effect when spoken by a parent to a child. Coming from a parent, it can be taken at least two ways: as an honest expression of concern for safety, and as an ill-fated attempt to control what is beyond his control. Both are very effective for the book’s plot. But the backstory to that line will show us it evolved from a very different circumstance.

Ironically, the line ‘watch out for the undertoad’ came from real life, and the words were first spoken by a child rather than an adult. John Irving’s eldest son Colin said it to his younger brother Brendan, who was just six years old.  And from then on, young Brendan was afraid to swim in the ocean.

The layers of meaning within his words were not lost on Colin, and he even understood why his father decided that for the book, the words carried more literary impact when spoken by an adult. Yes, at age twelve Colin understood that if his father switched the character from child to adult it would make the reader question the concept of safety more deeply. In a 2018 interview with Esquire magazine, Irving said his son Colin was also the first one who zeroed in on the main theme of the book. Colin told his father, “If Garp could have been granted one wish, it would have been that he could make the world safe. For children and for grownups.” ‘Watch out for the undertoad’ represents our misguided attempts to do so.

No matter how much we want the world to be safe and stay the same, there’s nothing we can say or do to fully avoid risk or change. That’s as true for those of us with chronic illness as it is for parents. Despite our best wishes to offer valuable advice and guidance, and no matter how much we try to prepare our kids–or each other–for the world, we shouldn’t be surprised if our wisdom and guidance is not enough or lost in translation. And when push comes to shove, we might need to admit that we’re not the great, all-knowing teachers we’d like to be. In fact, we might even need to humble ourselves enough to learn a lesson from our children, just as John Irving received insight from his son Colin.

In the context of high school graduation ‘watch out for the undertoad’ is symbolic of my fear of  letting my child go out in the world on his own, but I can also hear it as a clarion call for people with chronic illness. We too need to watch out for dangers that may be lurking in the unknown. Medicine is an evolving science and despite the best care and advice from the people we love and admire, it’s up to us to make decisions to keep ourselves safe.

For me, the emotional journey of letting go of  my child has not been as clear-cut as the symbolic gesture that often marks this occasion. The child’s gesture of donning a graduation cap and flipping the tassel from one side to the other seems so matter of fact, when compared with the emotional turmoil I feel as a witnessing parent. How can a transition that makes me so very proud, simultaneously fill me with mind-numbing pain?

Perhaps the pain I feel as a parent is most closely related to fear of my son’s uncharted future. And if John Irving’s son Colin is right, then perhaps the process of setting my child free to pursue his own life is more about fear for his safety, rather than fear of my own loneliness. That would mean my pain is rooted in love rather than selfishness, and that makes it bittersweet.

When pain is looming like an undertoad beneath the surface of a fast-approaching future, I think we can feel confident that the skills we use to make peace with chronic illness will also help us make peace with the undertoad. The tension between facing loss versus denying loss is familiar to us. Our experience of ‘letting go of health as we knew it’ is an example of the bittersweet pain of letting go.

Right now, my imaginary triptych of maiden voyages ends with an image of loneliness, and I’d like to transform that. What might be a better ending? Let’s imagine a new maiden voyage, but with one big difference–This time I’ll visualize Jasper leading the way at the wheel of his very own boat, shouting back over his shoulder to my husband and me as he races through the current off Garp’s beach, “Mom, Dad! Watch out for the undertoad!”

Opening ourselves to learn from our children is one of the unexpected gifts of parenting. Opening ourselves to learn from our fears is one of the unexpected gifts of living a soulful life and embracing the bittersweet. Both can lead us to deeper truths. Thank you for investigating the deeper truth at the heart of high school graduation with me today, and helping me build the courage to watch my son flip his tassel from one side to the other on graduation day without worrying myself sick. Because if I’ve done my job well, he will be just fine without me.

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

Segment 7 in our series Soul Chronicles for the Chronically Ill

By Shaler McClure Wright

Health Story Collaborative · Soul Chronicles: On Thresholds, Rabbit Holes, Wardrobes and Transitional Space

Audio Story Transcript

Introduction

You’re listening to episode seven 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 - On Thresholds, Rabbit Holes, Wardrobes and Transitional Space

Can you remember the most significant days in your life? I bet you can, because the events on those days were most likely threshold experiences, and as such, they’ve received a special place in your memory, preserved with almost cinematic detail.

Most commonly, the word threshold refers to a place where you make a physical crossing—like walking over the sill of a doorway or through the entrance of a building. But it also refers to various points of ‘beginning’ that can be cultural, psychological or emotional—as in rites of passage or life’s milestones. Similar to a crossroad, a threshold requires a choice to be made, a leaving behind to gain something new. But a threshold also contains an additional component—the transitional space of in-between.

Līmen is the Latin word  for threshold; Līmen refers to the border between one thing and another. And within this borderland is something called liminal space—which can be thought of as the transitional space between two locations or phases.  An example of this, in the literal sense, could be the walls of a tunnel through which one must pass. An example in the metaphorical or symbolic sense might be the period of engagement between a marriage proposal and the wedding. In both instances the transitional space holds an aura of other-worldliness–a heightened sense of reality where unusual things can happen.

Jungian analyst Katherine Olivetti suggests that navigating thresholds and transitional space requires new attitudes. She says, “The experience can be felt as frustrating, painful, exhilarating, challenging, frightening or liberating … This is a place where the opposites are not clearly defined, where rules are suspended, collisions abound, and new possibilities emerge.”

Sounds frightening to me, but it also sounds thrilling.

When friends and family undergo a threshold experience, I’m especially drawn to their stories of time spent in the transitional space of in-between, because that time can have a mystical, almost magical quality, fostering breakthroughs to new ways of thinking and being. A dramatic example of this could be the story of a near-death experience.

Thresholds are places of potent energy. The emotional energy involved with facing a threshold is complex and often contradictory. It can swamp you with a sense of overwhelm, or elevate you to a new perspective with more clarity. So when life accelerates and change is imminent, it’s wise to become well-practiced in moderating your response.

As Irish poet John O’Donohue has described, “A threshold is not a simple boundary; it is a frontier that divides two different territories, rhythms and atmospheres.” Indeed. Each time we find ourselves standing at a threshold, we also receive an implicit invitation to reconsider our priorities and attachments. And that takes courage and practice.

Thresholds often accompany the milestones in life, and if I think about it honestly, my emotional response to those occasions has rarely been one-dimensional. Maybe that’s true for you, too. In fact it’s quite likely a threshold experience will stir up all kinds of conflicting emotions, even if the threshold is one to celebrate. And those emotions can wreak havoc on our ability to think, feel or see clearly.

O’Donohue believes the emotional intensity of a threshold experience is connected to fear of change. “To change is one of the great dreams of every heart – to change the limitations, the sameness, the banality, or the pain… But change is difficult.” Along with courage, we also need trust. “To acknowledge and cross a new threshold demands a sense of trust in whatever is emerging.”

But courage and trust take time to develop. Perhaps transitional space exists because it is needed. When we’re in the midst of a threshold experience, we need the transitional space to give us time to develop courage and trust. Here’s an example of what I mean:

I remember how I felt on the day I first received my diagnosis. Time stood still and my mind went gray.  I felt a physical sense of standing in between ‘life before’ and ‘life from now on.’ I remember feeling shaky and uncertain. It was scary, but now I recognize it’s common to feel that way while standing in transitional space. That space is where I mustered my courage. That space between two points of being. Between what was familiar and what is unknown.

Because of our medical challenges, thresholds are likely to be familiar to those of us who have faced the reality of chronic illness. And I believe our experience can give us a leg up when it comes to helping others who are facing thresholds of their own. Should the opportunity arise, we are primed through our experience to be valuable threshold guides. I hope to talk more about how we might serve as valuable threshold guides in the next Soul Chronicle.

I also believe those of us with ongoing health conditions can develop special strengths. For instance, in order to balance truth with hope, we might find ways to pair child-like curiosity with adult-like courage. Or we might learn to find beauty in loss, or learn to take strength from facing disappointment or the unknown.

The ability to engage with change is most effectively fostered in childhood. When I think of well-known threshold experiences, I find myself remembering images from childhood literature. Most of the storybook characters I continue to admire have navigated a significant threshold with child-like curiosity, and through their experience, have grown wiser to tell the tale.

Let’s take a closer look at two of these characters; Alice, from Lewis Carroll’s “Alice’s Adventures in Wonderland,” and Lucy from “The Lion, the Witch and the Wardrobe” by C.S. Lewis. Alice begins her series of threshold experiences in a mad rush, while Lucy begins with careful consideration of her transitional space.

First, here’s Alice in the passage when the rabbit first captures her attention:

“It flashed across [Alice’s] mind that she had never before seen a rabbit with either a waistcoat-pocket or a watch to take out of it, and burning with curiosity, she ran across the field after it, and was just in time to see it pop down a large rabbit-hole under the hedge. [And] in another moment, down went Alice after it, never once considering how in the world she was to get out again.”

The rabbit-hole is a threshold.  But Alice didn’t pay any attention to the transitional space in-between the entrance and the exit. She also never took time to consider the risks of going down the rabbit-hole; instead she was completely driven by impulsive, child-like curiosity. And that’s a good place for a child to start, but it deprives her of the wisdom she might’ve gained during the transition. As the story continues, Alice is faced with more threshold experiences, and with each one she opens herself up a bit more to the mysteries of transitional space. And her growing discernment and worldliness is representative of how we too, might grow in our own experience.

Now let’s consider a passage in “The Lion, the Witch and the Wardrobe” where young Lucy decides to push her way through a secret entrance to a magical world hidden in the back of a wardrobe full of old fur coats.

“She went further and found a second row of coats hanging up behind the first one. It was quite dark and she kept her arms stretched out in front. She took two or three steps further in. [...] Then instead of feeling the hard, smooth wood of the floor of the wardrobe, she felt something soft and powdery and extremely cold. [...] The next moment what was rubbing against her face and hands was no longer soft fur but something hard and rough and even prickly. ‘Why, it is just like branches of trees!’ exclaimed Lucy. And then she saw a light a long way ahead of her. Something cold and soft was falling on her.[...] She was standing in the middle of a wood at night-time with snow under her feet and snowflakes falling through the air. Lucy felt a little frightened, but she felt very inquisitive and excited as well.”

Unlike Alice, Lucy took the time to experience every sensory element during her transition, and because she was grounded in the physical reality of her surroundings, I believe she was able to move past her fear and face the magical, snowy woodland with the same excitement as an explorer in the age of discovery.

Lucy’s flexibility and open mind serve as examples of the kind of strength to be gained from a threshold experience. And both of these qualities are available to those of us who pass through medical thresholds as well.  Although a threshold can feel like a curse at the time of occurence, in retrospect, I believe it is a gift. Especially since part of the challenge of being chronically ill is to feel and face every dimension of the experience, rather than dissociating.

If we can stay present, then with every threshold experience of transitional space comes an opportunity to become both wiser and deeper. And every time we become wiser and deeper, we are also becoming more soulful.

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

Segment 6 in our series Soul Chronicles for the Chronically Ill

by Shaler McClure Wright

Health Story Collaborative · Standing Watch On The Sleepless Sea

You’re listening to episode six 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/artist living with Chronic Inflammatory Response Syndrome.

Standing Watch in the Sleepless Sea

Being awake at night when the world is asleep is like standing watch on a ship at sea. After a few hours of staring into the distance, you might feel isolated, fearful and uncertain if you will ever dock in a safe harbor again.

Worries loom larger in the silence of darkness, just as rocks seem to rise out of nowhere. And once-familiar objects are shrouded in strange, threatening silhouettes. Many of us with chronic health conditions have sailed on the sleepless sea, and quite a few of us are frequent passengers.

I’ve been bunkmates with insomnia for decades. When I was in my 20s and 30s it was easy to shake off a sleepless night and function pretty well the next day. But now it takes a toll, and I’m learning to treat sleeplessness with new respect, as both a worthy adversary and instructive companion.

Being alone and awake in the night can be frightening. Nocturnal impressions are heightened. Even when we’re old enough to put aside our childhood fears of monsters under the bed, insomnia can feel like a giant presence, smothering you with unstoppable, oppressive force.

But it’s also true that the mystical aspects of darkness can serve as a gateway for visualization, opening us to new and unexpected points of view. And there’s a better chance of quieting our worries if we choose to walk through that gate without preconception or fear of where it might lead.

Here’s what I mean. These days, when I wake up in the wee hours (envious of my husband’s purring-ly deep sleep), I direct my attention away from the fuzzy shadows and inward to my imagination. Then I choose to visualize a different experience of the dark, from another time. I like to choose events that have held space in my memory, but may not yet be fully understood.  Most recently I chose to revisit my memories of midnight from a specific perspective— at sea…

Just after I graduated from college (a long time ago) I was invited to live and work with a family on a sailboat, as we voyaged from Finland to Sicily. During longer passages we followed a system called watch ‘n watch, which means round-the-clock sailing—four hours-on, four-off—with our crew split evenly between shifts. I remember how my crewmate would wake me for the midnight-to-four [shift], whispering as she gently rocked my shoulder, “Polaris is bright and winds are steady. But there’s ground fog, so you’ll be in the bow, on lookout.”

 Lookout was my favorite job, especially in the mystical hours after midnight. I loved to feel the cool dampness of night against my knuckles and cheeks as I scanned the horizon for buoys and bells.

 But not every watch is idyllic. In foul weather, sound is distorted by ground fog. All appears quiet until something pops—all of a sudden—out of the darkness. At first it’s hard to tell how far away that something is, and your emotions can run the gamut from startled to fearful to attentive.

 It’s only in the attentive phase you can accurately make out shadows in the dark. Flotsam and jetsam float by without harm, and passing ships appear farther away than they actually are. Sound is muffled by moisture until it’s upon you. Most nights the sounds of the sea are soothing, but in foul weather, there are sounds that can rattle your soul.

 On one particular stormy night, as we were exiting the English channel and rounding the isle of Ushant to seek shelter in Brittany, we had a force ten gale that was blowing us sideways. Our bow was caught under breaking wave after breaking wave, and our foredeck was awash with the weather. The storm was too fierce for anyone to stand in the bow, so I stayed amidship, fastening myself to the guardrail for safety.

 We made little headway during that storm, even with shortened sails and use of our auxiliary engine. Our 57 foot sailboat didn’t have radar, so our biggest worry was about inadvertently finding ourselves in the path of a monster tanker, too large and immobile to slow down.

 The English Channel is a busy shipping lane with freight crossing at all hours. We could hear the tankers but couldn’t see them, and it was my job to sound our air horn once every minute to make sure they could hear us. We could feel their wakes, still rolling underneath us, and we held our breath, hoping we’d never come close enough to to get sucked in by their propellers.

 Luckily, our horn was heard and that night the tankers passed at a safe distance. But it felt like forever before we could rest. Finally, in the wee hours of that sleepless night we made entry in the nearest port. But it was a commercial harbor, and it was full. We had no choice in the darkness but to raft our pretty white sailboat to a rusty old reddish tanker that was ten times our size. And for all we knew, it could’ve been one of the tankers that crossed our path in the channel, but now its immense steel hull was providing shelter to our windward side.

 That stormy night reminds me of my worst nights of insomnia. With no sense of how much time had passed, no sense of where I was, and no sense of what lay ahead, I felt small and powerless. The overwhelming size of the tankers felt a lot like the overwhelming force of insomnia, and their churning wakes felt a lot like the tossing and turning of a sleepless night.

 That storm taught me many valuable lessons. And one, unbeknownst to me until now, is worth repeating: Try to remain open to what frightens you; for the very thing you fear may become your protector, given time.

 Just as a tanker can change from danger to protector, imagine the experience of transforming sleeplessness into dreamfulness. For in our dreams and imagination, the desperation of insomnia can be transformed into an opportunity for self discovery.

Juan Ramón Jiménez, Nobel prize-winning poet from Spain, describes the pivot point between desperation and discovery in his poem, “Oceans”:

I have a feeling that my boat

has struck, down there in the depths,

against a great thing.

                    And nothing

happens! Nothing...Silence...Waves...

    —Nothing happens? Or has everything happened,

and are we standing now, quietly, in the new life?

On that night of the storm I feared our boat would be struck by a ‘great thing’. But instead, the ‘great thing’ that posed such a threat in the channel, changed its position  and rested quietly, in a new place, where we would encounter it once again, from a new perspective. The final gift of that storm was coming into port, casting our lines and making fast in the dark, only to discover by daylight that we had tied up in the lee of the same tanker that could’ve sunk us at sea.

 In its worst expression, insomnia can feel like a force ten gale blowing between our sheets. And after we’ve been swamped under the crests of its breaking waves, the potential insights to be gained at the bow of our ship of sleeplessness may feel out of reach. But over time, if we stay present, I suggest we can trust the afterstorm to settle.  And if we’re lucky, we may even find ourselves basking in the guiding light of the North Star, Polaris, as we make way, with a yawn, for safety and peace.

 So when you’re faced with sleeplessness, try to remain open to what frightens you; for the very thing you fear may become your protector, given time.

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

Instagram: @soulchronicles22

FaceBook: Shaler McClure Wright

Segment 5 in our series Soul Chronicles for the Chronically Ill

by Shaler McClure Wright

I’d like to thank Health Story Collaborative for working with me to bring you “Soul Chronicles for the Chronically Ill.” This monthly audio column offers a soulful perspective on navigating the unique challenges of living with ongoing health conditions. My name is Shaler McClure Wright and I’m a writer/artist living with Chronic Inflammatory Response Syndrome.

Health Story Collaborative · The Essence Of Illness: Beast Or Star?

Have you ever wondered how you might describe your essence?

The part of you most connected to your soul?

Last month we considered Carl Jung’s belief that body and soul are not two things, they are one. With that in mind, our essence would also be the part of us most connected to our body. And for those of us with chronic illness, we’d be hard pressed to imagine anything with a stronger connection than that!

Let’s take a moment to imagine our illness as our essence…

Your first reaction is probably shock, or even horror. “What! I’m essentially ill?” 

So let’s try a softer approach. Let’s imagine that instead of spending our time and energy trying to ignore our discomforts, we shift and allow ourselves to see our chronic condition as a major, ongoing presence. After all, it’s as much a part of us as our heartbeat.

“Renaissance doctors believed the essence of each person originates as a star in the heavens,” says spiritual writer Thomas Moore in his book “Care of the Soul.”

To me, this means we have an inherent connection to something greater than ourselves, and our essence is shaped by that connection. And if our essence is chronic illness, then it, too, is connected to something greater than ourselves, with all the mystery that implies.

If we can imagine our illness having deeper meaning, then we can open to the possibility of discovering hidden aspects of our connection. Moore goes on to suggest a connection between our essence and our suffering—which we might visualize as a connection between our illness and our suffering:

“It is a beast, this thing that stirs in the core of our being, but it is also the star of our innermost nature. We have to care for this suffering with extreme reverence so that, in our fear and anger at the beast, we do not overlook the star.” - Thomas Moore, “Care of the Soul”

 I love Moore’s concept of approaching our suffering with reverence. It leads me to wonder how we might also approach our illness with reverence. How might that change our perspective? And what could there possibly be to revere?

I’d like to suggest that our relationship with our illness is likely the most important physical relationship we have. That may sound alarming, but for those of us with chronic conditions, before we can enjoy any other relationship, we need to accept, understand and maintain a committed relationship with our illness.

 Elizabeth Nelson, Jungian scholar and author, has developed a technique for recognizing our commitments and evaluating their meaning. To begin, she invites us to shift our focus from ego to soul.

Most of us, she says, sustain multiple important relationships—to people, projects, causes, and one’s self—that demand time and energy. She invites us to imagine each relationship as a metaphorical marriage, to give it the weight it deserves. Dr. Nelson believes “one must awaken to the possibility that we are trying to maintain several competing ‘marriages’ in life,” then asks, “which is your primary commitment?”

 For those of us with ongoing health conditions, our primary commitment needs to be to our health, even before our commitments to partner and family. This commitment, however, may be hiding in plain sight because we don’t want to think of illness as a companion who accompanies us through life.

 To explore the shadowy aspects of our relationship to chronic illness, we might give ourselves the exercise of writing a letter. Asking our illness what it wants and needs. Asking how we can honor our connection.

 In Jungian psychology this process is called active imagination. It’s ok not to know how to begin. Just clear your mind, breathe, and write down whatever comes up without judgment.

You may feel uncertain about writing to a chronic health condition rather than a person. You may feel without direction, but if you can allow your thoughts to wander, and remain open to the images that come to you, you’ll succeed.

Let’s begin by using a prompt for reflection:

‘If my illness is my essence, then my illness is both beast and star.’

How does that make you feel about your relationship?

I like to start by asking a stream of questions, until eventually one sticks, and without effort, another point of view begins to reveal itself.  I’ll show you what I mean by sharing a bit of my imaginary letter…

“Dear Illness,

I wonder how you feel, knowing you cause me to suffer?

I wonder if you consider yourself a beast?

I wonder how you could ever possibly be my innermost star?

My resistance to disease makes me want to run away from my body, but it makes you want to stay. I guess that makes you the fighter; the one who is not afraid to dirty her hands. And that makes you brave. 

I understand there’s more than one side to you. A beast is only a beast in the eyes of its beholder, and I don’t want to fear you any more. I want to touch your soft spots. I want to rub your belly at the end of the day when you stretch out in front of a fire.

But I don't have a sense of your size. How much space do you take up? Are you really as massive as I fear you to be? Perhaps you’re only as massive as my fear allows you to be.

I feel you thump in my chest. I hear you ringing in my ears. I sense you filling my mind with white fog. I see you drenching my clothing with sweat. You’re good at demanding my attention.

But you also inspire me—with your strength and resilience, your willingness to dance with the unknown, your comfort with change, and your refusal to surrender—even when we can’t see a path through the fog.

I can honor you for our differences. I’m grateful for our differences. Perhaps I am even better off for our differences. In a way, you complete me. You’re the part of me that never gives up.

If you are part beast, then the beast is the most animated part of you, but not the most effective. The beast feels trapped in my body and misunderstood and is crying out for attention. The beast in you is needy. 

But there is another, quieter part of you, looking ahead for opportunities to escape. Perhaps that is the star in you; focused on the possibility of illuminating a path in the dark.

I want to learn to see you in full—to see you as both beast and star—and I promise to hold you, my essence, just as a star holds the light of the moon.”

I hope you can see how writing this letter has revealed something new about my relationship with my illness. I now realize I want to deepen my connection, instead of trying to pretend it doesn’t exist. For all of us, illness has more than one dimension, and if we can learn to see it in full, then perhaps we can be more honest about our commitment.

“A good life is nourished by making wise commitments,” Dr. Nelson reminds us, “And ultimately, committing wisely is care of the soul.”

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

FaceBook: https://www.facebook.com/profile.php?id=100012522457289

Segment 4 of 6 in “Soul Chronicles for the Chronically Ill”

by Shaler McClure Wright

I’d like to thank Health Story Collaborative for working with me to bring you “Soul Chronicles for the Chronically Ill.” This monthly audio series offers a soulful perspective on the unique challenges of living with ongoing health conditions. My name is Shaler McClure Wright and I’m a writer/artist living with Chronic Inflammatory Response Syndrome.

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Health Story Collaborative · Illness And Omicron

In Soul Chronicle One, “Shifting the Body from Enemy to Ally,” I spoke of how we might learn to see illness as an opportunity, and symptoms as clues pointing to something in our psyche that needs attention. Illness in the body offers us the chance to simultaneously ask ourselves, “What in our soul might need healing too?” Where is the sorrow, regret or soul-wound that might be bonded with this physical pain? And then we might notice that when we pay attention to our soul-pain, our physical pain benefits. This widening of the lens, or reframing of our health circumstances can be a powerful tool. And the more we practice listening to our body’s wisdom, the more we can appreciate our body’s deep connection with soul.

 But nothing in life is static. And over time, we’re bound to face unpleasant circumstances that work to break this connection.

 Just last month, my soulful perspective was challenged. After the holidays, like thousands of others, I got a breakthrough infection of Omicron. I imagine many of you have had Omicron too, and if not, maybe you’re faced with fear of it as an unknown. So I’d like to share my experience.

 For the record, I was lucky; for me it was mostly like a bad case of the flu. But instead of giving you a list of my symptoms and discomforts, I’d like to read you one of my favorite poems, one  I return to when I feel ill. This time I’ll use it as a way to talk about elements of my covid experience.  Here is “Illness; a Conversation” by Joyce Sidman, from her children’s book “What the Heart Knows.” Sidman is having a conversation with her body while ill:

“I asked my feet why they could not walk

and they said, We are treading water.

I asked my legs why they buckled and fell

and they said, We are growing roots.

 I asked my fingers why they had loosened their grip

on the world and they said, It is too hard to hold.

We are gathering clouds instead.

Why? I asked my eyes, which kept crying and crying,

and they said, We are waiting for the very last tear.

Speak! I told my lips, but my voice was not my own.

So I asked my heart, Who am I now?

and my heart said, The you underneath the you.

And I asked my soul, Who will I be?

and my soul answered,

        The one whose heart is open,

        the one whose eyes are clear,

        the one whose hands are full of sky.”

During Omicron, the first hint I had that something was wrong was feeling an overwhelming urge to lie down in the middle of the day. I just wanted to get off my feet because my legs were aching. Perhaps Sidman has felt a similar ache:

“I asked my feet why they could not walk and they said, we are treading water.”

 When our bodies are fighting an infection we need to give them all the energy we can muster.  And if at some point our bodies resist movement,  it’s because beneath the surface, our bodies are working hard to keep us afloat. While fighting Omicron, it helped me to imagine having web-like feet, paddling to hold me steady over the surface of a deep pool of discomfort. I knew the pain was there, and every so often I might drift into a cold spot that chilled me to the bone, but my treading feet kept me away from the coldest parts.

“I asked my legs why they buckled and fell and they said, we are growing roots.”

Fatigue and lack of strength are also part of the Omicron experience, and each time I tried to get up and get things done, my shaky legs made it clear I was going nowhere. So instead of persisting, I used that time to imagine deepening my roots in the world, and that image gave me permission to surrender to stillness.

“I asked my fingers why they had loosened their grip on the world and they said, it is too hard to hold. We are gathering clouds instead.”

Sometimes we need a break from the pressures of daily life, and one of the opportunities of illness (if you will), is time. When we’re stuck in bed we can use that time to redirect our attention and visualize the world as we would like to see it. Or perhaps more to the point, as we would like to feel it.  For me, the image of gathering clouds feels much like gathering hopes and dreams. Much better than worrying! And just as it’s not possible to catch a cloud with a clenched fist, it’s also not possible to dream a dream until we loosen our hold on the fear that keeps us from falling asleep.

“I asked my heart, who am I now? And my heart said, the you underneath the you.”

When I was sick with Omicron I had a week-long headache that made it hard to think straight. I couldn’t read or write and barely had the energy to watch tv. My brain was not in charge. So for me, ‘the you underneath the you’ is my heart-self rather than my head-self. And in times of illness, our heart-self cuts through the tangled web of our thinking mind, to clear the way for inner strength to rise.

“I asked my soul, who will I be? And my soul answered, ‘The one whose heart is open, the one whose eyes are clear, the one whose hands are full of sky.’”

When we feel ill we can’t help but wonder how the experience might change us. “Who am I now?”  “How long will it take to get back my energy? What if I’m left weaker?” And if any of these things turn out to be true, the next step would be to put them in perspective, holding them shoulder to shoulder with the aspects of ourselves that illness makes stronger—our compassion, awareness and appreciation of beauty. And from that vantage point, though still significant, the potential remnants of illness are less looming.

One thing that Sidman does not address is the loneliness that often accompanies illness. When I had Omicron, I needed to isolate from my family, and it was the sense isolation that was hardest for me. Feeling alone while in pain can make the pain feel more intense. Feeling alone while in pain opens the door to worry. And when worry makes her entrance, we’re likely to hear a round of unwelcome but familiar ruminations circling through our minds. “What if there’s?… Is that from?.. Will it also?…” You know the drill.

When anticipatory anxiety powers our mental list of things to worry about, it’s exhausting, circular and endless. Like a hamster on a wheel. And if not reckoned with, our anticipatory anxiety can grow even stronger—into generalized health anxiety, where we fear the worst for our bodies without clear reason.

That said, for those of us with chronic illness, the possibility of developing Long Covid is a very real concern. Could Omicron (even though it’s thought to be relatively mild) be capable of leaving us with Long Covid, as the other strains have? After Omicron I worried that every lingering discomfort might be caused by some residual virus taking up permanent residence in my body. I imagined it as a stealth invader, hiding in wait. And that weakened my resolve to heal—not a trade off anyone with chronic illness should be willing to make.

Even if Omicron doesn’t cause much harm on its own, could it still serve as a catalyst, or triggering event for the return of older, more familiar symptoms? With Omicron, our anticipatory fear can be more intense because the virus is shrouded in mystery. Because it is new. Because people with ongoing health conditions, having supposedly recovered from Covid, may only now be realizing how the virus is still affecting them.

And, here’s the part we don’t like to hear when speaking of anticipatory fear—anticipatory fear is dangerous because sometimes fear itself can manifest the pain. There. I said it. The fear of Long Covid can plant us firmly on the unwelcome doorstep of somatic illness; a threshold we prefer not to cross.

I remind myself that I have many tools to cope with illness. If the Omicron variant were to persist, or trigger other symptoms, well, I know how to handle it—step by step and breath by breath. And when I feel my anxiety ratcheting up, I use the power of soul to calm my fear.

Joyce Sidman’s poem, “Illness, a Conversation” speaks to my soul. Do you have a poem, painting, sculpture, place, or song that speaks to your soul?

If we can remain open, fear can be an invitation to dialogue with soul. Swiss psychologist Carl Jung tells us, “Soul and body are not two things. They are one.” (Carl Jung, Zarathustra Seminar, p 355.) When we partner with soul, our bodies have a better chance of staying in the moment and handling one discomfort at a time. It might be a struggle, but it’s a fight worth fighting. Fear is corrosive to our health. Soul is restorative. Be kind to yourself and choose Soul.

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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 son and husband.

Website: www.shalermcclurewright.com

 FaceBook profile

Go here for more episodes of our Soul Chronicles series.

Segment 3 of 6 in our Soul Chronicles for the Chronically Ill series.

By Shaler Wright

Health Story Collaborative · Soul Chronicles: Reclaiming What We've Left Behind

Introduction

I’d like to thank Health Story Collaborative for working with me to bring you “Soul Chronicles for the Chronically Ill.” This monthly audio series offers a soulful perspective on how to navigate the unique challenges of living with ongoing health conditions. My name is Shaler McClure Wright and I’m a writer/artist living with Chronic Inflammatory Response Syndrome.

Story

(audio clip of “Bring it on Home to Me” warm up vocals from Roger Ridley)

That’s the voice of Roger Ridley, a street musician whose soulful voice inspired the collaborative musical movement “Playing for Change.”

Roger’s warming up to breathe life into the timeless lyrics of American singer/songwriter Sam Cook:

“If you ever, change your mind,

about leavin’, leavin’ me behind—”

This music fills us with an undeniable experience of longing, reminding us of things we’ve lost and long for, and suggesting that what we’ve lost may well be lost without us too. What if the things we’ve left behind—the things we’ve had to give up because of our illness—what if they could reach out to us, and tell us how it feels?

“—oh-oh bring it to me,

bring your sweet love,

bring it on home to me.”

You see, when we give up something—like running or dancing or hiking up a mountain—because we no longer have the stamina or it causes too much pain–we’re also giving up the feelings and memories that go with that activity. You could even say, when something expresses our soul, then giving it up relinquishes a piece of our soul. And bits of soul, when split from the whole, will naturally seek to reconnect. But it’s up to us to answer their call.

This is the time of year when people try to improve their health by giving things up—like alcohol, sugar, caffeine. But in our dedication to become ‘less’ we ignore the equal and opposite idea that in order to be healthy, we also need to become ‘more’.  Like Roger Ridley and Sam Cooke, we need to reclaim some of what has been lost to us, even though, through the very act of reclaiming, those very things will be changed. Let me give you an example:

I trained as an actor for many years and was proud of my ability to memorize. Bringing words to life in scripts, stories, and poetry was joyful for me. But my illness has cognitive implications, and over time I’ve lost that ability to a great degree. So I’ve avoided opportunities where I’d be called upon to use my memory. 

But how much of that loss is based in practicality and how much is colored by pride?

While it’s true I’m no longer well suited for a leading role in a full length play, in leaving the theatre behind, I’m also leaving behind the artists who were like family to me. Effectively, I’ve exiled myself from my tribe. And exile is lonely. And loneliness goes both ways— but I never even considered the possibility that my tribe might be missing me too. I never considered that even with my impairment, there might still be some creative way I can contribute and collaborate.

And that’s short-sighted, not soulful…

Because in giving up theatre, I’m also leaving behind the imaginary worlds I used to inhabit through the playwright’s plot and a character’s dialogue. Whether it was the epic journey of a Russian classic, the treachery and forbidden romance of Shakespeare, or the hard hitting rage of a rebel like Mamet, the range of feelings I got to experience safely, in a contained space where emotional intensity was appreciated, is simply without parallel in daily life. And our creativity suffers with sameness.

Sometimes I can still hear in my head the words of a character I’ve played. Reminding me their story continues, even though I’ve stopped. Summoning my attention. And as I reconsider the impact of these words, I’m realizing that because of my illness, these words and images and feelings I’ve left behind are even more dear to me now, and my perspective on their value has deepened. 

Perhaps those of us with chronic illness can shine new light on old actions. Perhaps we can reclaim the mantle of life’s earlier loves and achievements by adapting our approach. We may not be the star athlete of a team or the lead actor in a play, but we can offer a deeper appreciation of what that was like, and give voice to the richness of those experiences.

One of my favorite theatre characters was a young woman named Wilma, from the Off Broadway play "Easter" by Will Scheffer. Wilma has recently lost her first child in childbirth, and is trying to make sense of her loss while also trying to reclaim her life with her husband Matthew.  After acting out her pain in other, inappropriate ways, she describes what she’s learned from her experience like this:

“I think the stars have told me their secret, Matthew. They said the secret to shining as bright as a star is just to live here.  Just to stay here in this impossible place.  And just like how diamonds are made in the earth, from living under the earth, under all that pressure—that's how we turn into stars.  It's like gravity is forging us.  And whenever we hurt it's just because we're changing.  We're changing into stars.”

At the time I performed that monologue I had never been pregnant and had no way of knowing that my illness would also cause problems with pregnancy. But now that I’ve been through so much to have a child of my own, I can more fully appreciate the way Wilma transformed her pain into light, and that light into a beacon of beauty.

And because I’m now a member of more than one tribe,  I can also share her words with a new audience; with people like you, who also understand what it is to have felt buried by our pain. The words have a deeper meaning in our world. And I believe Wilma and her playwright would be honored to become part of our world too. 

So now, whenever I have a rough day, I try to remember the things that gave me joy, that I abandoned too completely. And I open myself to the possibility that even though I’m not able to give them what I once could give, I just might be able to give them something new. And that’s true for all of us. But unless we open ourselves to the possibility of reclaiming the favorite things we’ve lost, we’ll never know for sure. So keep your ears open and listen for the melody of longing. It may just be your own past calling you back home.

Original recording source for song clips:

“Bring it on Home to Me” written by Sam Cooke, with vocals by Roger Ridley, recorded by Playing for Change

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 son and husband.

www.shalermcclurewright.com

Go here for more episodes of our Soul Chronicles series.

Segment 2 of 6 in our Soul Chronicles for the Chronically Ill series.

By Shaler Wright

Health Story Collaborative · How to Build a Holiday Toolkit in the Dark

Introduction

I’d like to thank Health Story Collaborative for working with me to bring you “Soul Chronicles for the Chronically Ill.” This monthly audio series offers a soulful perspective on how to navigate the unique challenges of living with ongoing health conditions.

My name is Shaler McClure Wright and I live with Chronic Inflammatory Response Syndrome.

Story

We’re hip-deep in holiday season as I make this recording. Daylight is giving way to darkness, while we’re wading through a sea of festivity.

Holidays can be tough for those of us with chronic illness. Rushing around, overextending ourselves can cause flare-ups in our symptoms. That’s no way to celebrate! So how can we protect ourselves, yet still participate?

We need to build a holiday toolkit.

Let’s begin with an empty box and see what happens. We know that nature abhors a vacuum, so if at first we do nothing, what do you think will fill it?

American poet Mary Oliver envisioned her answer in this short poem that came to her in her sleep: “Someone I loved once gave me a box full of darkness. It took me years to understand that this, too, was a gift.” (Mary Oliver, The Uses of Sorrow)

The gift of darkness takes time to understand because it takes us a while to get past our simplistic, fearful conception of the dark. Once we put that aside, we can see that the gift of darkness is also an invitation—to slow down and feel more deeply. Yes, darkness is an invitation to spend time with soul. By soul I mean the part of us that embraces ancient wisdom and acknowledges the value of intuition.

Connecting with soul takes us outside of ourselves and opens us to the spiritual and natural worlds. For me, walking in the forest is a soulful activity. I wonder what feels soulful to you?

The energy of darkness is soulful. Mystical, magical, creative energy.  Ann Ulanoff, author and Jungian analyst, writes about the healing power of the imagination. She explains darkness like this: “Darkness… characterizes the world of the unseen, and the mysterious processes of the unconscious where creative activity starts.”  (Ann Ulanov, The Feminine in Jungian Psychology and in Christian Theology, 1971, pp. 170-71).

Darkness offers a fertile space for exploring possibilities for our actions and reactions. Darkness is a great incubator. And darkness is restorative, as it facilitates healing through stillness and rest. Without it, our physical resilience suffers.

So why do we go to extremes to resist the soulful invitation of darkness?

It’s too different from the energy of everyday life. The soulful energy of darkness emerges from a place of quiet contemplation, and this goes against our carefully cultivated habits of busyness and productivity. So we resist, even though we need to replenish the energy we’ve spent throughout the year.

Think about it, the most festive holidays fall in the darkest time of year. We cling to an extended cycle of celebration in defiance of natural order. We can feel nature pull us toward quiet, but we ignore her. Even at our own peril. Mother Nature wants us to slow down, like the animals do, but instead, we crank up the volume of daily life and try our hardest to keep busy. In America, we cling to mega-sized holiday traditions.

But excess doesn’t feed our soul. Simplicity does.

Perhaps we can learn a lesson from the Littlest Angel. The Littlest Angel is a children’s story written in 1946 by Charles Tazewell. It follows heaven’s youngest—and clumsiest—angel, who was allowed to keep one thing from his childhood on Earth to help him adjust. He chose a small,  dingy box holding ‘a butterfly with golden wings, a sky-blue egg from a robin’s nest, two white stones from a muddy river bank, and a tooth-marked leather strap, once worn as a collar by his mongrel dog.” Objects that elicit memories. Objects that serve as symbols of the life he loved. Without knowing it, the Littlest Angel had assembled a box that would give him the resilience he needed to adapt to life after death.

Wouldn’t you like to assemble a box like that? A box of resilience?

Right now our holiday toolkit is filled with darkness, soul and energy. But what if that’s not enough? What else might we add to give us the resilience we need? Perhaps if we choose as carefully as the Littlest Angel chose, we will find out. Perhaps we can transform our box of darkness into a box of resilience by adding symbols of strength from our life. Let’s imagine what those might be…

●      A joyful memory can give us strength. I’ll add the blue booties my child was wearing when he took his first steps. How about you?

●      An unexpected act of kindness can give us strength. I’ll add the four leaf clover my mother found for me when I was feeling very, very unlucky.

●      A personal ritual can give us strength. I’ll add the matches I use to light a candle when I meditate.

●      And finally, a free pass (to do less) can give us strength (to do what’s important). I’ll give myself permission to upack five bins of holiday decorations instead of nine.

Still not sure?

Let’s imagine a simple scenario of how we might use the new tools in our box…

It’s Christmas Eve morning. We begin our day by quietly filling the bird feeder outside our kitchen window, as we do every day. But today there are three red cardinals perched in the closest evergreen. We’re reminded of how our grandfather taught us to always look for their mates, who might feel forgotten because they blend in with the brown bark of a tree. Holding the image of redness, we smile and remember the thick red wool socks our grandfather always wore for the holidays.

Then we receive a notification from UPS that our most important gift for our child is lost in transit. We panic and beat ourselves up for not having ordered it sooner. We get a headache and start to feel shaky and fear our symptoms will cascade. But instead of escalating our pain by quickly trying to do something to fix things, we give ourselves permission to pause and do nothing.

In that moment of stillness, we imagine a creative solution to our problem. And we write a letter to our child, describing every detail of the missing gift and explaining why we chose it, and what we hope it will mean to them. We place the letter in a colorful envelope and tie it with a red bow, smiling once again at our memory of red socks. The doorbell rings. It’s the UPS man. He has come to work early to search their pile of damaged packages and he’s found ours. The gift is unharmed.

We feel surprised, relieved and blessed. While wrapping our child’s gift we realize the letter we wrote to take its place is perhaps more important than the gift itself. And by choosing to do less—by choosing not to run out and buy something else—we have actually given ourselves the opportunity to do more. We have accepted the invitation of darkness and soul, and given expression to a meaningful gift from our heart.

Things have a way of working out. And even with all the cultural pressure to do more, it’s still our personal privilege to choose to do less. To stay healthy. To seek deeper, quieter solutions to our problems. Soulful solutions that enrich us instead of draining our energy.

So, whether we celebrate Diwali, Hanukkah, Kwanzaa, Solstice or Christmas, we each deserve a holiday toolkit that can help us make better use of mother nature’s restorative gift of darkness. Because resilience is born in the dark.

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 son and husband.

www.shalermcclurewright.com

Go here for more episodes of our Soul Chronicles series.

Segment 1 of 6 in our Soul Chronicles for the Chronically Ill series.

by Shaler Wright

Health Story Collaborative · Soul Chronicles: Shifting the Body from Enemy to Ally; How to Recognize and Honor the Process

Audio Transcript:

My name is Shaler Wright. I’m 63 years old and I have Chronic Inflammatory Response Syndrome. I’ve had it for many years, but until this year, I didn’t know there was a name for it.

It’s not active all the time, so, for decades really, I’ve resented my body and felt like it was failing me when I had symptoms, But what if the truth was actually the opposite? What if, against all odds, my body had been fighting a magnificent battle, and was a strong warrior, deserving acknowledgment and celebration?

 Imagine how it might affect our healing if we were to give our bodies the admiration they deserve…

When an illness becomes debilitating, it’s a crisis. But what if we can remain open? If we can keep an open mind, then chronic iIlness can actually become cathartic, and our healing can include a reunification of our  heart, mind, body and soul.

What does it take to make that shift?

To make that shift in our attitude toward our body to get it from enemy to ally?

We need to see our symptoms through a new lens.

What if we can learn to see our symptoms as an awakening, as an opportunity? That would change everything. James Hillman is a Jungian psychologist and he had this to say about symptoms: “The right reaction to a symptom may as well be welcoming rather than laments and demands for remedies, for the symptom is the first herald of an awakening psyche that will not tolerate any more abuse.“

Wow, what a way to turn it around.

But how do we do that?

Well, I think we need to stop trying to package our symptoms in a neat little box. We need to see them as part of a bigger experience. As a clue, for parts of ourselves that need attention.

Like lost sheep, needing to be brought back into the fold.

I know what you’re thinking. You’re thinking “Why would I want to pay attention to something that hurts or is uncomfortable? Why would I want to focus on it? I just want to make it go away!”

 I totally understand that because I think that’s what all of us with chronic conditions do. We teach ourselves to distract, I  think that’s the first thing. We teach ourselves to distract ourselves from any unpleasant feeling. We just ignore it. We try to keep busy with other things, and eventually this leads to dissociation. Eventually our minds are not even connected to our bodies any more. We get really good at it. We get really good at doubting whether anything is actually real. When we feel pain we say, “Oh that’s not real. I’m just exaggerating in my head. That’s not anything.”

 But it is. And we know it deep inside. And sometimes we even go so far as to feel shame. We feel shame that we feel that way. We feel like our body is failing us. And we alienate ourselves from ourselves. This self alienation is absolutely crippling. But I think it’s a habit almost all of us have. And habits are hard to break. Sometimes it takes an outside influence to help us make the change. For me, that influence was a new doctor.

 After I rattled off my litany of seemingly disconnected complaints, instead of looking dazed and like he didn’t believe me (like other doctors had), he took a long pause and he said, “We’re gonna figure this out.” And poof! Just like that, I had a partner. I was validated. I felt legitimate. And it felt great.

 Our journey together would take years. Two steps forward, one step back. But it was OK. It was OK. For the first time I felt like I was on a path instead of stuck in a hole. And, looking back, I think I needed that time to learn how to reconnect with the body I had abandoned. I need to learn to sit quietly, and pay attention. To visualize my pain without dismissing it.

 I learned to respect my symptoms, and to learn that they were, in fact, trying to teach me, not hurt me. It can feel very humbling to admit to ourselves that we’re not in touch with our own body. It seems like such a natural thing to be able to do, and yet so elusive for those of us who have learned to ignore our discomforts. But once we take that first step, the next ones become easier.

 My first step came with pregnancy. My illness makes it difficult to become pregnant because it messes with my hormones. So I had given up hope of ever having a child. Then at age 45, I found out I was pregnant. Not only was I pregnant, I was NINE weeks pregnant and I didn’t know it. I had lost–I had had several miscarriages–before that and just assumed that would continue to happen. But this was nine weeks. It was nine weeks, it was enough to count! I was pregnant!

 And when I got over the shock of actually being pregnant I realized that I couldn’t feel it. I couldn’t feel my child growing inside of me. And that scared me. So I went to an energy healer for guidance. I wanted her to keep my child safe. I wanted her to reassure me that he - yes I knew it was a he - that he would be growing in safety.

 She told me that he had a very strong presence. He had a strong, warm, bright light. And that he would most likely be a peacemaker, a builder of bridges. And I thought, “What a gift. What a gift that I get to bring this child into the world!”

 And then I got sick. My symptoms started acting up and I got bronchitis. And coughing like crazy. They had to give me codeine so I wouldn’t cough so much and that’s kind of a tricky thing when you’re pregnant. I also got in a car accident and broke a rib, and I was terrified I was going to lose my child.

 My ObGyn told me that my son probably saved my life. That thanks to him, I was like a big bubble-wrapped UPS package, and I just bounced off any harm from the impact. So my unborn child and I were partners. Not only in adversity, but also partners in change. Because pregnancy is all about change, constant change. And my pregnancy taught me not to fear change.

 For the first time, I felt discomfort as progress, and I knew it would be temporary. I used to fear any changes in my body because change could be triggering. I feared an unavoidable cascade in symptoms. But you know, you know the old saying ‘the only way out is through?’ Well, that’s true for positive change as well. If you never chance for fear of losing, you’ve already lost. So change became my friend and my ally.

 I often return to a quote from Marcus Aurelius’s “Meditations.” “Time is a sort of river of passing events, and strong is its current; no sooner is a thing brought to sight than it is swept by and another takes its place, and this too will be swept away.”

 The first time I read this I thought it was distressing. “Such impermanence! Can we count on nothing?” Hmm. Yes, we can count on change. And that’s a good thing. That’s progress. And the changes needed to switch our chronic illness from a crisis to a catharsis are primarily changes in attitude. We need to trust our growing awareness of our body, and listen to it. And pause when a treatment is not working, instead of just being compliant because we’re ashamed and feel like we have no right to even be there.

 Chronic illness can be a lonely road. We need to ask for fellow travelers. We may feel odd and unknowable but others know that feeling too. And if we can let down our guard and allow ourselves to be seen, we will find out we’re not alone. We’re not odd, we’re just challenged. Our bodies are challenged. And as soon as we can stop resenting our bodies for being challenged, then we can begin to appreciate the unfathomable resilience of our bodies. And even if we never come to understand all the whys and hows of everything that happens to our bodies, we can cherish the fact that mystery, as well as change, is one of our body’s greatest gifts.

Go here for more episodes of our Soul Chronicles series.