During nurses month, on June 16th, 2022 we honored the stories of Lauren Aloisio, RN, BSN, Clinical Nurse, PACU and Jonathan (patient) and Nancy Gardner (patient's mother).
The bond that exists between Lauren, both a nurse and cancer survivor and her patient Jonathan, a cancer patient, is truly remarkable and a reminder of the tremendous power that connecting and listening to one another can have on our ability to heal.
Segment 9 in our series Soul Chronicles for the Chronically Ill
by Shaler McClure Wright
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
Questions by Val Walker
Answers by Sarah Merrill
Sarah is a personal historian and owner of Merrill Memoirs (www.memoirsbymerrill.com). Since 2010, she has been assisting individuals, families and small businesses in recounting, recording, and preserving their stories. Sarah works with a talented genealogist to complete family research, and she contracts with a professional book designer to present her clients’ stories and photographs in beautiful books. She also teaches memoir writing workshops and serves as an editor for people writing their own memoirs of family histories.
Sarah earned her undergraduate degree with high honors in literature and creative writing at Middlebury College, Vermont, and completed graduate work in oral history and nonfiction writing at the Salt Institute for Documentary Studies in Maine. She spent ten years in journalism before launching her personal history business.
Introduction
Have you ever engaged in a leisurely conversation with someone who not only listened to your story, but was fascinated in every bit of it? Indeed, your listener beckoned you to unearth memories that perhaps you had not thought about in years?
Sarah Merrill is this kind of listener. With genuine curiosity, she invites you to dive into all the details of a life story and discover the long-forgotten treasures that may have been buried for decades. With Sarah, your story’s details are for excavating, examining, saving, and savoring. And later, after selecting your stories, she artfully crafts a narrative of your life to create a memoir or a family history book, or more loosely, a collection of personal stories on a beloved topic. This intricate and complex work is generally what a personal historian such as Sarah does. Experienced personal historians combine the expertise of active listening, archiving of artifacts, genealogy, narrative writing, ghost-writing, book production, self-publishing, and more.
In the following interview with Sarah, I hope to introduce readers to the vital work field of personal history.
Val: A personal historian needs to be talented at writing as well as adept at engaging people and listening--and yet, needs to be impeccably accurate and organized. This is a very particular mix of gifts to have. How did you get started at this?
My interest in collecting stories and memories actually started when I was just a kid. I seem to have been born nostalgic! I always kept diaries and scrapbooks and saved every letter I ever received. I also was very enamored of my grandparents. I really wish I’d been enlightened enough to record their stories while they were still here. This is one of my regrets and part of what powered my inspiration to become a personal historian. In addition to being a collector and memory keeper, I was a storyteller. I read a great deal and I wrote stories all the time. I studied fiction writing in college and those skills are absolutely employed when I’m writing memoir and family history. In addition to accuracy, an important goal is for the narrative to be an engaging read!
Val: Could you tell me more about what is involved when you listen to peoples’ stories in your work? How do you get them to relax and delve into their recollections with such vivid detail?
As personal historians, we are very client focused in our work. Listening is about building trust. Trust is key. This means I don’t want to force the narrative or push someone to get to the point. Instead, I gently allow them to discover and explore as they travel back in time. I often spend upwards of eight hours with my clients, spread over a few days, so they have ample time to cover a lot of ground. In telling their stories freely, without trying to meet any external criteria, my clients have the control, they choose what to share. In some cases, the experience of sharing a story can be enlightening as well as enriching. And sometimes, they’ll tell a story just to get it off their chest, but then decide not to include it in the final product.
Val: This reminds me of an important technique in psychology and counseling, developed by Alfred Adler. Adlerian approaches are invested in early childhood recollections and how we find meaning and wisdom in these old narratives.
I believe at different times in our lives, we can revisit our stories and discover new takeaways by seeing details or patterns we’d never noticed. We can look at a relationship over time and see patterns or healing. We can even look at a trauma in new ways and sometimes find healing. It’s important to point out that I am not anything like a therapist. I’m more like a guide on a journey of life review. And life review has many, many benefits. Though some topics may be too difficult, and I always let people know it is completely fine to leave them out.
Val: It sounds deeply meaningful to help people value their stories as history.
“One of my clients getting a first look at her family history book. In this case, this was the third book I produced with her.”—Sarah Merrill
My work is rewarding on multiple fronts. We can help clients understand the impact of peoples’ struggles and challenges in their families over the decades. In reviewing our life stories, we can sometimes more clearly see the influences that people have had on us, on our families, our communities over time. We can see the impact we’ve had on others around us. We can see our own challenges from a new perspective. Our children and grandchildren can be enriched by what our family members have faced and battled through generations.
Val: Is the field of personal history becoming more popular?
The field of personal history is still not well known—not yet, really. But fortunately, interest in the field of genealogy has greatly increased in recent years. And in the first year or so of the pandemic, people had more time to reflect. Folks pulled out photo albums or downloaded a genealogy app. The interest in genealogy has sparked people to learn more about their ancestors and families and has helped lead them to the field of personal history and writing memoirs. But there is a significant difference between genealogy and personal history. Certainly, personal history complements and includes genealogy. I work closely with a genealogist in my business.
Val: When did you actually discover there was such a thing as personal history and give yourself a professional name, “personal historian?”
At some point, I was aware that I wanted to work with individuals and families to record their stories, but I did not know there was a field called “personal history” or that others were already doing this. I’d volunteered in a nursing home helping elders write their memoirs and it struck me then how rewarding it was. Especially visiting these fairly isolated and lonely elders and actively listening to them, taking an interest in their lives.
Around 12 years ago, when I was working as a journalist and a medical writer, I learned through a newspaper article of a man who was working as a personal historian – and it all just clicked into place. He was gracious enough to meet with me and discuss his business model. And from there, my dream gradually became a reality. I slowly built my business as a professional personal historian with my company Merrill Memoirs. I’ve been doing it full time for about 10 years and have written dozens of memoirs and family histories.
Val: What types of people come to you for your services?
I’m either hired by the individual themselves – typically aged 60 to 100 – or by their adult children or their grandchildren, who want the stories recorded. People are realizing they need to get their loved one’s stories recorded before they are gone. Sometimes, the older generations may be reluctant to be the center of attention like this. I sometimes hear, “Why would anyone want my stories? I’m not interesting!” But truly, once they begin the story sharing process, they realize how wonderful it can be. I often have people express disappointment when our interviews are completed.
Further Reading
To learn more about Sarah Merrill and her services: www.memoirsbymerrill.com
To learn more about personal historians in the Northeastern US: Personal Historians Northeast Network www.phnn.org
Val Walker is a contributing blogger for Psychology Today and the author of 400 Friends and No One to Call, released in 2020 with Central Recovery Press. Her first book, The Art of Comforting (Penguin/Random House, 2010), won the Nautilus Book award and was recommended by the Boston Public Health Commission as a guide for families impacted by the Boston Marathon Bombing. Val received her MS in rehabilitation counseling from Virginia Commonwealth University and is a rehabilitation consultant, speaker, and educator. Keep up with Val at www.ValWalkerAuthor.com
by Shaler McClure Wright
Segment 8 in our series Soul Chronicles for the Chronically Ill
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
By Braiden Rex-Johnson
The skin is the largest organ in the body. And when something in the body’s largest organ goes awry, it can create havoc in a patient’s life.
I suffer from a skin disorder called Granuloma Annulare (GA). It is characterized by red circles, raised spots, pink and purple patches, crusty plaques, and subcutaneous bumps.
Parts of my body look like that of a burn victim; others areas like a leopard. I liken my skin to a Modernist painting.
For the most part, I try to hide myself from neck to ankles under long-sleeved shirts and full-length pants whenever I leave the house.
But out of the ugliness of GA can come beauty when photos of the bumps and patches are turned into watercolor-like “paintings.” If you look hard enough and let your imagination run free, you can discover a fascinating collection of objects among the patches and lumps on the landscape of my ever-changing skin.
Here is The Calm Before the Storm.
And this is Bunny Rabbit.
Here is Africa.
This one is entitled The Continents.
And, finally, the vivid hues of Violaceous.
Segment 7 in our series Soul Chronicles for the Chronically Ill
By Shaler McClure Wright
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
By Braiden Rex-Johnson
Television advertisements for well-known disorders such as psoriasis, rheumatoid arthritis, and asthma tout new wonder drugs that can clear plaque-ridden skin, improve the pain of damaged joints, and help people breathe more easily, respectively. But for sufferers of granuloma annulare (GA), there is no magic panacea that will stop the unsightly red rings, violet patches, oozing plaques, and painful nodules that can pop up anywhere on the body.
My own case of GA began in the spring of 2017. I was 61-years-old when a red ring, about the size of a quarter, popped up on the back of my right hand. The ring was slightly raised and a bit itchy. At first, I dismissed it as an insect bite or a pesky skin eruption and hoped it would just go away. But on an otherwise ordinary Saturday afternoon, while we were sharing fajitas at our favorite Mexican restaurant, my husband asked about the strange circle on my hand. It was then that I realized I needed to see a doctor STAT.
My primary-care physician thought the circle might be ringworm. But when a course of antifungal cream didn’t help, she prescribed a strong steroid cream. Even that didn’t faze it. And within weeks, I watched helplessly as red spots about the size of nickels started appearing on the backs of my pale and—until then—blemish-free legs. I watched in growing alarm as a smaller red spot sprang up on the outside of my left knee; then one on my right elbow. My skin was turning into a Modernist painting before my eyes as the angry red bumps spread over my extremities.
What were these strange spots? What if they spread to my face? I had always taken good care of my skin, choosing unscented products, moisturizing my body, and slathering on sun screen, so why was it turning against me now?
I made an emergency appointment with my long-time dermatologist. He agreed that my condition was most likely GA. To confirm the diagnosis, he anesthetized one of the most prominent bumps, then “punched” a small plug from its center. After examination by a pathologist, this “punch biopsy” confirmed that I had GA, and all of this just six weeks after the pesky red ring first appeared.
My dermatologist suggested starting intralesional corticosteroid injections with a drug called Kenalog. He said he hoped the under-the-skin injections would make the bumps go away, or at least calm the inflammation and help them fade over time.
Injections?!?! I had always been afraid of needles, and there were so many places to inject. The thin needles in the Kenalog-filled syringes moved over my body like a swarm of angry bees stinging their way across my torso. Sensitive places like the backs of my knees, under my breasts, and near my groin especially hurt. Sometimes I flinched and grimaced, unable to control my body movements.
To help ward off the pain, I often held my breath and pretended I was elsewhere. When the torture was over, I looked down at the examination table and saw red spots—my blood—spattered on the protective white paper where I had just laid. Although painful and unpleasant, the “jabs” became a necessary evil. I remained ever hopeful that they would make my GA go away, since my dermatologist kept predicting that it would most likely "burn out" within a year or two.
But it didn’t. The injections helped flatten the bumps and lighten the patches, but new lesions would simply pop up in different places. One time, after undergoing what seemed like hundreds of “jabs,” my doctor said that injecting me “was like a game of whack-a-mole.”
Granuloma annulare is an ugly disease, both literally and figuratively, affecting both mind and body. The uncertainty and unpredictability of this disorder—knowing it is roiling deep inside your body, ready to spring up anywhere and at any time—is one of the most unsettling and frustrating things about it.
Somehow, my precious husband of 40 years manages to see past my imperfect exterior. And a kindly nurse once said one of the patches looked like a butterfly tattoo! Still, I can’t imagine being diagnosed as a child, trying to navigate the dating scene, or going through GA alone. I am thankful we live in the Pacific Northwest, where I can hide my spots most of the time.
Since my diagnosis more than four-and-a-half years ago, I have learned a lot about GA, which translates from Latin as “inflamed ring” and is more correctly known as necrobiotic papulosis. The “inflamed rings” of GA were first reported in 1895 in the British Journal of Dermatology. According to a recent article in the American Journal of Clinical Dermatology, it is a rare disease, affecting just .04% of the United States population. Women are three times more likely to suffer from it than men, it most often occurs in the fifth decade of life, and is more prevalent among Caucasians.
The exact cause of GA is unknown, although some believe it is a result of trauma or injury to the skin (such as an insect bite), sun exposure, viral infections, or vaccinations. People with GA sometimes also suffer from thyroid disease, diabetes mellitus, and autoimmune diseases such as rheumatoid arthritis and lupus. The good news is that GA is neither cancerous nor contagious. The bad news is that some people experience pain, itching, burning, and perforations in their skin.
Granuloma annulare most often appears on the hands, wrists, feet, and ankles, although sometimes even on the face. It comes in different forms. The localized type often occurs in children, the rings are confined to one area, and sometimes it goes away spontaneously. Subcutaneous GA, also mainly seen in children, is less common and appears as rubbery lumps.
Perforating GA forms crusty yellowish plaques, mostly on the hands. The patch type presents as pink, red, or purplish patches and usually affects females over the age of 50. Generalized, or disseminated GA is diagnosed when a patient has more than 10 spots. More common in adults, generalized GA tends to be more persistent, is difficult to treat, and can last for decades, sometimes never resolving.
Because the underlying cause of this disorder is unknown, finding a gold-standard treatment that works for every patient is difficult. I have tried first-line options, including steroid creams and injections, and a third-line treatment, phototherapy (treatment with strong lights) without success. Through my research, I learned that certain prescription drugs have helped resolve some recalcitrant cases of GA. However, many dermatologists (including my own) are reluctant to prescribe them because they have not received FDA approval for use in GA, clinical trials are small or nonexistent, and side effects can be serious.
But after suffering for so long, I was getting desperate. And when my husband said he would be willing to “go to Mayo Clinic or anywhere else in the world to get me fixed,” I knew I had to do something drastic. Thankfully, we didn’t have to travel far afield. In January 2022, I found a dermatologist at a local teaching hospital who was willing to prescribe an oral drug called Hydroxychloroquine (yes, that Hydroxychloroquine!). Although it is more commonly used to prevent or treat malaria, rheumatoid arthritis, and lupus, Hydroxychloroquine has shown promise in patients with tough cases of GA.
My new doctor explained that while steroid injections can help, they don't address the underlying cause of GA. After explaining possible side effects (atrial fibrillation and retinal problems) she advised me to start taking Hydroxychloroquine twice a day for four to six months, and return for a three-month check-up.
I was overjoyed! If it worked, it meant no more fiddling around with creams, injections, or light therapy. But the first doses were tough. Nausea, dizziness, and unsettling dreams lasted close to a week, but eventually my body adapted. I am already seeing improvement, but even if Hydroxychloroquine doesn’t work or eventually stops working, my doctor said there are other drugs to try, always walking the fine line between side effects and efficacy.
Late last year, I discovered the Granuloma Annulare Support Group, a private Facebook group that was started in 2015 and now numbers close to 8,000 members from across the globe. Although this is a group none of us ever wanted to join, members are compassionate and caring. Sharing stories and photos has improved my mental attitude and helped me realize I am not alone. Misery loves company. When members were asked to describe GA in one word, the answers were heartbreaking: Evil, annoying, constant, perplexing, creeping, depressing, life-changing, relentless, unwanted.
Granuloma annulare is all of these and more. Yet the promise of systemic drugs offers GA sufferers something that is often in short supply: hope. And maybe someday, GA sufferers like me will be able to turn on the television and exult in advertisements that tout our very own wonder drug.
Braiden Rex-Johnson is a retired food-and-wine writer, the author of seven published cookbooks, and the owner/founder of www.SeattleWaterfrontWebcam.com.
Segment 6 in our series Soul Chronicles for the Chronically Ill
by Shaler McClure Wright
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.
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.
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
By Laura Stepnicka
Invisible illnesses are all I know and have reshaped every fiber of my being. Many develop mental anguish after years of managing crippling chronic pain - but I went reverse course.
In 2016, I was in a battle for my life. That battle was my own internal battle. I nearly did not survive. My mind was being ravaged by what would soon be diagnosed Major Depressive Disorder. The subtle signs had been running under the current for some time, but once depression truly took root, it would not relent. Depression ravaged my mind and distorted every single shred of reality. Of perception. Of clarity.
During the darkest depths of my battle with mental illness, the disease stole my strength, clarity, cognitive functioning, and ability to make even the simplest of decisions. I became a shell of a human. The previously super social creature I was became a mute. I withdrew from people I loved. I stopped being able to do my job. I stopped knowing how to live. The mind is so powerful and once illness invades, disease wants to be the victor.
In the 3 years following 2016, there were entirely too many moments staring at my broken, defeated face in the mirror. It became a battle of self-will for survival. Fight for one more hour. And then one more.
Suddenly, the years have passed, and I am a survivor. I am strong. Resilient. Empathetic. I know the depths of finding yourself swimming under current, constantly attempting one second above water. The undercurrent is unpredictable. Especially when it seems that you have the heaviest weights strapped to your ankles, bringing you further away from air. One breath. Come up for air. Back underwater. I know the depths of the deepest, darkest hole and fought my way out. I was brought back down and tested many times.
I taught myself how to rebuild. The healing journey always starts within ourselves. I had numerous resources and support that gave me an advantage, but the real work is internal. The treatment options I explored and utilized knew no bounds. When medications were not working, I researched and tried alternative treatment options, at the guidance of my doctor. When my doctor no longer served me, I found new doctors. No rock was left unturned in my fight to live.
Absolute sheer will and leaning into the right resources is what allowed me to very slowly start rebuilding. I was building back up from the ashes.
My mental health journey changed me, for the better. I found my voice and my purpose. I found my footing by honoring the pain, but embracing the beautiful parts of me that I discovered along the journey. I sat in the pain. I fought the hardest of fights. I did the work.
The invisible scars of my battles are etched in every fiber of who I am, but they are what make me who I am today. I actively practice gratitude. I find and cultivate joy in the smallest ways.
Shortly after I started healing mentally; I experienced what would become a lifelong journey battling another invisible illness: chronic pain.
After navigating some of the most renowned hospital systems to help understand and treat my chronic pain - constantly shifting, pivoting and advocating for my care - I see how much those of us with invisible illnesses have to advocate to be taken seriously medical. Illnesses that cannot be seen require medical professionals to trust their patients. For women, symptoms that cannot be seen are entirely too often considered psychosomatic and in our heads.
The onslaught of my chronic pain was similar to my diagnosis in 2016 with Major Depressive Disorder. Fast and furious.
I lifted my 30 pound nephew one day, who I had lifted often for the first 1.5 years of his life, and that was the beginning of my chronic pain journey. Pain arrived suddenly and never went away. Soon after that incident, after being turned away by a medical provider, the bulging disc hit a nerve cavity that has now compromised my right leg. I drive with my left foot. I often limp. I wear a specialty belt and have a lumbar pillow that comes with me everywhere I go. I wear compression socks and take two baths a day with essential oils and bath salts. Despite these efforts, the nerve damage spread to both hands and I developed carpal tunnel out of nowhere. It was at the stage of needing surgery. And then it healed. To me, this is a testament to the strength of cultivating a strong, resilient mind.
Nearly every single moment, awake or not, for the last 2 ½ years, I am in varying degrees of pain. It is difficult to get the care you need for illnesses that cannot be seen to the outward eye. Despite that, doctors have shared that my body is in overdrive trying to heal itself. I owe that to the strength and perseverance of my mind. The mind that turned against me and told me I was not enough. That same mind now works for me to help me fight my new invisible illness that will also be with me for life.
The work I did to heal myself through my mental anguish, the ability to finally sit and feel the mental turmoil, allowed me to climb out of my personal purgatory. The strength of your mind is humbling.
We all hold pain and uncertainty differently. We all find strength, resilience, fight our internal battle, differently. I cannot tell you how many days I looked in the mirror, with puffy, swollen, defeated eyes and tears streaming down my face and literally, out loud, spoke to my reflection. I willed myself to keep fighting. To keep fighting. One more breath. One more moment. One more day. That was my life.
And now, I have built a life that is beyond what I could have imagined. The person I was in those years of torment, is never far, but she grounds me. She reminds me to be grateful. To appreciate the small, simple moments. To persevere. She is also always in physical pain, but people do not believe what they cannot see.
Laura Stepnicka is a Chicago native who lives with two invisible illnesses: depression and chronic pain. These invisible illnesses have changed every fiber of her being and she is very aware that her conditions are part of a lifelong journey of healing and growth. A journey she has fully embraced. Laura decided in early 2021 to make several lifestyle changes and moved to a one stoplight kind of town in Southwest Michigan, nestled in her log cabin in the trees with her sweetest foster fail, Piper. More on her blog, Cocoon for the Kindred.
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.
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.
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
Go here for more episodes of our Soul Chronicles series.
By Andrea Gilats, author of an important new memoir, After Effects: A Memoir of Complicated Grief .
My beloved husband, Thomas Dayton, died in 1998 at the age of fifty-two, ending his five-month battle with cancer. As you can imagine, my life changed dramatically at that point. To put it bluntly, I grieved intensely for nearly ten years and lived with unresolved grief for ten more.
After Tom’s funeral, I naively expected that each day I would feel better than the day before, and that after a few months or perhaps a year, I would somehow be myself again. Thankfully, for many of us, that is the course our grief takes. We are able to recover from even our most grievous losses by traveling a relatively straightforward psychological progression from the actual loss (bereavement), to our responses to that loss (grief), to learning to live with our loss (mourning), and to the return to a satisfying life (recovery). Along this path we might encounter ditches and detours, but experts agree that recovery from “active” grief is as normal as grief itself. But what if we cannot meet this expectation? What if this so-called recovery is somehow disrupted or undermined? What if these “normal” processes take an abnormally long time to take hold? What if they fail us altogether? What if something inside us will not allow us to release ourselves and move forward?
These were the questions bubbling up within me as I tried to write about my grief experience. As I wrote, I researched, and eventually, just by chance, I encountered the pioneering work of Dr. M. Katherine Shear, the founder and director of Columbia University’s Center for Complicated Grief. Through her work, I discovered that for nearly two decades, I had suffered from a known disorder called “complicated grief”: acute grief that is abnormally intense and prolonged. Even though complicated grief affects up to one in seven bereaved people, many of them never recognize that the course of their grief is not normal, as I did not, and suffer in silence, as I did.
Dr. Shear tells us that grief is considered complicated if it continues to be acute for at least a year after the loss and if the bereaved person is experiencing persistent yearning or longing for the person who has died, a recurring desire to die in order to be reunited with that person, refusal to believe that the grieving person’s loved one is really gone forever, inappropriately intense reactions to memories of the person who has died, and “distress or impairment in social, occupational, or other important areas of functioning.”
For years, I suffered from all those painful, debilitating feelings. I had had toothaches, bee stings, and blistering sunburns; I had had influenza, the vomiting flu, and, as a four-year-old, a burning ear infection. I had had my heart broken more than once, but I had never felt pain, whether physical or emotional, that was so excruciating I could not bear it. Yet after Tom died, the unbearable became real. There I was, feeling that I would either explode or implode virtually every minute of every day, and there was no respite, there was no relief, there was no one to rescue me.
I learned then that when the spirit is so deeply wounded, the body can’t help but follow suit. Why could I not keep my food down? Why did I feel such extreme fatigue every single day? Why could I not concentrate long enough to make a grocery list? Tom was gone from my sight and I knew what constant sorrow was, but I never questioned these physical changes, even though they were ruling my life.
Had I thought to look into it, I would have learned that losing a close loved one is a singularly powerful source of stress, and stress can weaken the immune system. So while grief is not normally viewed as an illness unto itself—after all, losing our loved ones is an inevitable part of the human life cycle—it can make us physically sick. While grieving, we are more likely to catch colds, have our colds degrade into pneumonia, be plagued with insomnia when we most need to maintain our meager energy, and suffer from anxiety that leaves us short of breath, which makes us feel panic, which makes our hearts beat too fast, which makes us feel fear.
There is even a condition called broken heart syndrome whose symptoms mimic those of a heart attack, but without permanent cardiovascular damage. Related to broken heart syndrome is the “widowhood effect” that most commonly affects older couples and is realized when one spouse dies within months of the other. Researchers attribute this to the fact that grief causes inflammation levels in the body to rise, leading to (actual) heart attacks, strokes, and diseases like cancer that result in premature death. Unfortunately, I was a living example of this phenomenon.
I was born with what people used to call a “sensitive stomach.” I had lived with off-and-on-diarrhea, as well as related unpleasant symptoms, for most of my life, but I had learned to adapt to my condition. Then, soon after Tom died, my digestive problems worsened precipitously. My daily bowel movements doubled from about six to about twelve each day, and some days I defecated fifteen times. Time and time again, my then doctor tried to diagnose what had become a significant disability. Finally, after seven years of inconclusive tests and failed guesses, she sent me for a colonoscopy, which confirmed that I had Crohn’s disease, an auto-immune disorder characterized by inflammation of the bowel.
Not only did I have a diagnosis, I was facing the prospect of surgery to remove two and a half inches of what the surgeon called “diseased bowel” near my terminal ilium, the place where my small and large intestines meet. Thankfully, I came through the surgery without incident and was sent home from the hospital to complete my recovery. I had been home for only two or three days when I began to feel feverish, out of sorts, fuzzy-headed, and exceptionally tired. I called my surgeon, who immediately sent me for a CT scan to determine whether my surgery site was infected. Abscesses are common after bowel surgeries, and sure enough, I had one. I was sent directly from the imaging clinic to the hospital, where I would receive intravenous antibiotics.
I was assigned to the third bed in a room originally meant for two patients. My nearest roommate was a young woman who had obviously been terribly injured. Her face and neck were covered in bruises, and her left arm, including her entire left hand, was wrapped in a thick bandage. Her bed was only about five feet from mine, so I couldn’t help but overhear conversations at her bedside. The first of these was between two hospital staff women; one may have been a nurse. As the poor patient rested, awake but silent, the two confirmed to each other that the patient was scheduled for surgery the next morning to have her left hand rebuilt. Apparently, it had been crushed in a brutal beating she had received the night before at the hands of a boyfriend or husband.
Shortly thereafter, two different women came to her bedside and began a conversation with her. Very quickly, I came to understand that one was a social worker and the other a translator: my roommate spoke no English, and her social worker spoke no Spanish. Her heartbreaking story was that she had indeed been abused by her live-in boyfriend and was now suffering from the worst of the frequent beatings she had received at his hand. Somehow, she had managed to escape from their home and get to the emergency room, but her toddler daughter was still with him.
She could not return to him: she feared for her life. “What will happen to my daughter?” she asked, and then, probably rhetorically, “Where will I go? I have no place to live.” The social worker assured her that they would be sending child protection workers to get her daughter, and that she and her daughter would be placed together in a shelter where they would be safe. For now, she should not worry; she should just concentrate on her recovery. The social worker assured her that she was safe in the hospital. After this brief interview, the two left, promising to see her again the next day.
Moments later, a soft-spoken young nurse came to take my roommate to the bathroom, and having just taken my sleeping pill, I dropped off to sleep. When I awoke the next morning, my roommate had already been taken to surgery. I never saw her again.
It was not the abscess at my surgery site that had put me in the hospital the previous afternoon, it was the fact that I was allergic to the antibiotics my surgeon had prescribed. In the light of morning, this obvious fact finally dawned on me. I knew then what I had to do. I left the hospital under my sister’s care, discontinued the offending drugs, and within thirty-six hours, I began to feel human again.
When living begins to look more promising than dying, it occurs to you at last that through your own suffering, you have learned more about the suffering of strangers, a lesson that your grief had kept from you. You think of the young woman in the hospital, and you feel more acutely how she must have suffered at the hands of her boyfriend. You feel no shame for the attention you paid to your own suffering; you simply start recovering your ability to live beyond it.
Andrea Gilats is the author of an important new memoir, After Effects: A Memoir of Complicated Grief (University of Minnesota Press, 2022), which Dr. M. Katherine Shear called “a beautifully written story of the heartbreaking problem of complicated grief,” and Restoring Flexibility: A Yoga-Based Practice to Increase Mobility at Any Age (Ulysses Press, 2015). A writer, educator, artist, and former yoga teacher, she is currently at work on a second memoir, this one about entering old age during the coronavirus pandemic. You can learn more about Andrea and her books at www.andreagilats.com.
By Kaitlin Kerr
I’ve always been close with my little sister. Growing up, we were in the same dance classes and shared the same bedroom. We even ended up going to the same college.
We were never bothered by the sameness, the closeness. We enjoyed each other’s company. Much to the dismay of our mother, after driving through three states to a family party, we’d ignore the sea of uncles and grandmothers and cousins. Always ending up hiding in a far-off corner. With a bounty of stolen cookies from the dessert platters. Sitting cross-legged on the floor, muddling our special party dresses. Giggling together.
Despite the fact she’s exactly three inches taller than me (but it’s okay, I wear four-inch platforms), I’ve always understood what it meant to be the big sister, to be looked up to. I understood my role as a companion, a confidant, and a role model.
Knowing she was there, watching me, made me better.
I refused to talk negatively about my body, knowing we share the same figure.
I refused to make myself quiet, knowing we share the same roaring laugh.
I refused to bite my tongue, knowing we share the same wit.
Soulmates are the people in our lives that we have an unexplainable affinity for. We love them, as if our beings were meant to unite. Honestly, I don’t know if I believe in soulmates. Truth be told, when it comes to love, I’m a “Miranda”-level cynic. But isn’t it a nice idea?
That two souls can intertwine.
Were meant to intertwine?
The summer I was diagnosed with Major Depressive Disorder (garnished with Acute Anxiety Attacks), I wasn’t exactly a big sister. I wasn’t exactly a person. It was after my first year away at college and got bad once I moved back home.
By then, we weren't sharing a room anymore.
I cried almost every day. Sometimes I’d hide it, silently reclusive in my bed. Sometimes I’d burst in the middle of dinner. Sometimes it was in the car. Most of the time it was without reason.
I spent most of that summer in a black hole.
Our dad thought I should try some drugs to help calm me down. Our mom thought I was too young for Xanax.
I was nineteen years old. My eyes permanently tinged red and patched blue. She was sixteen years old. And somehow, she knew what I needed.
I remember one particularly bad evening. I was comatose with my eyes open, swaddled in sheets soaked in the stench of a showerless week. Sometimes the safest thing to do when you’re like that is just lay down and teach yourself how to breathe.
She came into my room with the night breeze, carrying an offering of sweet peach tea. Her long golden auburn hair still dripping from the shower. Seeping and staining her white cotton pajamas.
Then instead of tenderly sitting at the foot of my bed like she was visiting a hospice patient, the way my mother did, my little sister belly-flopped herself on top of me, the way I used to when we were kids and I was up before her on Christmas morning.
She never asked why I was upset. She never asked me not to be. She met me where I was, and made sure I wasn’t alone.
I was almost too numb to care back then.
Almost.
I still knew what it meant to be looked up to. I was supposed to be her companion, her confidant, her role model. What kind of role was I modeling if I couldn't get out of bed?
I could’ve told her that I was seeing a therapist. That I was taking bright orange and green pills. She probably wouldn’t have cared. Hell, she’d probably be happy that I was getting help. But I am not immune to pride. She still saw me as her big sister. Her confidant. Her companion. Her role model.
I couldn’t show her the world inside my mind.
My earliest memory is picking up my little sister from the hospital. I was only three at the time. I’m not sure if this is a real memory, or if I’ve fabricated it through secondhand stories and dreams. I remember the ride in my aunt’s minivan. Listening to the radio instead of my mom’s familiar show tunes CDs. The grey plastic leather of the seats. The not-my-mom’s car smell. The layer of my cousin’s Cheerio crumbs encrusted into every crack and crevice.
I felt the same kind of nervous excitement I imagine dancers feel before they go onstage. The kind of apprehension and subtle fear, anticipation and joy.
My mother had read to me I’d Rather Have an Iguana every night for the past month. It’s a cute little picture book about a sassy stubborn older sister who is simply not happy about having a younger sibling, but despite the little girl’s best efforts, her parents decide to go through with it anyway. Although I did not share the protagonist’s proclivity for reptiles, I never resented the idea of sharing my life with another person.
Perhaps I am exceedingly lucky, or perhaps this happens with all siblings, but I feel as though I’ve shared my life with her. Not in milestones or rites of passages, per se. In the way we share the same figure, laugh, and wit; we share the same character, morality, worldview.
I remember walking into the yellow where my mother lay, glowing in the warm autumn sun. The glint of the gold wire on her old glasses. The exhausted and ecstatic energy. I remember my mother in a voice like honey telling me that she missed me.
I remember my father holding a bundle of cream blankets. Him telling me that she might look like my baby dolls back home, but my little sister was not a toy.
I remember reaching out for the bundle. Holding her for the first time, supported by the hands of my anxious father. I remember being surprised by how warm she was. Feeling her body expand with each breath. Knowing she was small and fragile and precious.
I remember loving her.
Soulmates are the people in our lives that we have an unexplainable affinity for. We inexplicably love them, as if our beings were meant to unite.
I continued to live past that summer.
And the summer after that.
Recently, my little sister confessed that she was thinking of therapy herself. In stumbling phrases, I attempted to describe how she helped me. How she’d somehow known I needed to be sat next to, brought offerings of sweet tea. How I’d wished that I had been more open about what was happening inside my mind. In her own stumbling reply, she explained that she’d never have asked for help if I hadn’t gone first.
I understand now that I was never in danger of losing a soulmate.
It took time and therapy and tears, but I’ve been demoted from Major to Dysthymic depression. Slowly, I became able to acknowledge and speak about the world inside my mind. It’s a little scary at first, but hopefully with enough jokes sprinkled in, you’ll understand too. I explain how the orange and green pills make me feel. How to find a good therapist. How to use your support system. How to ask for help.
To be a confidant, you must share your own secrets.
To be a companion, you must open your own soul.
To be a role model, you must share your own tears.
Accept offerings of blankets and tea.
Let your soul intertwine.
Let your heart burst.
Kaitlin is a senior at Northeastern University studying English, with a minor in Writing and a concentration in Women’s, Gender, and Sexuality Studies. Her poetry has been published in Spectrum Literary Arts magazine, and her opinions have been published in Tastemakers music magazine. When she’s not writing, Kaitlin enjoys tormenting her kitten, hunting for vintage clothes, and the occasional video game.
Segment 3 of 6 in our Soul Chronicles for the Chronically Ill series.
By Shaler Wright
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.
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By Gillian
I was never a great swimmer. My body would tire and my muscles would ache. I’d thrash and squirm and gulp saltiness. I’ll never forget the feeling of inhaling water, the burning that sweeps through the lungs and the stinging during the slow recovery.
It was like that. The After. An inescapable breathlessness. A heaving and gasping and gulping, grasping for anything to hold onto. The in and out that skip and hasten. The airways close and the throat is no longer a tunnel but a labyrinth, constricting tighter and tighter. There’s choking for air, but the ocean is inside of you, swarming, swaying, swelling, spilling over the top.
And the cannon fire to underscore it all. A stampede of thuds clamoring in the chest, a great crescendo echoing up to the ears, drumming to a spiraling tempo… thud, thud, thud-thud, thudthudthudthud. Like a fist pounding on a door, banging, clanging, threatening to rip it open. A ringing thunder to drown it all out…
I try not to think too much about The Before. The mythical time when you’re blissfully unaware of the ticking time bomb waiting to explode, waiting to punch the irreparable hole in your chest. The time when you took everything for granted, overlooked the one person who’d love you unconditionally. Before you’d ever known true loss, before every single ounce of pain paled in comparison to the insurmountable agony you’d feel. The time before the world shut down and you found yourself standing in a hospital room wrapped in layers of plastic, reaching out to a pale arm that was far too cold and unrecognizable…
I’m lost in The After.
There’s disbelief. Denial, backtracking, shock. Each new question is an unsolvable riddle. How? How could this happen? It wasn’t supposed to be like this. We had plans. We had tickets to that show. She was supposed to come visit me that semester. We were going to do so much when this was all over. We were supposed to be together forever. I meant to say something before… Did I get to it? Everything was fine a week ago. And we were just talking about—what’s going to happen from now on? I didn’t get any sleep last night because of my darkly wandering mind, so maybe I willed it into existence. Did she know how late I stayed up, or could she hear the TV from the living room I kept on all night?
There’s remembering. Some things are crystal clear, like steppingstones through time, while others are fogged over, like warm breath clouding a looking glass. Those flashes of memory that come with or without invitation, possessing the mind to another time, another place, another reality. Sometimes you remember things like they were yesterday, that dumb joke that made you belly laugh, those long drives down backroads just to get out of the house, the warmth that filled the apartment when the oven was on. And other times, you don’t know if you just imagined them. You’re stuck in this purgatory of re-memory.
There’s reminding. Those cruel tricks of the mind. Like phantom pain in lost limbs every time you try to walk on one foot. Like tracing the hole of a missing tooth with your tongue and being surprised each time. The constant forgetting and reminding and shock cycles in an endless loop. Reminding yourself what was lost. Turning your head to speak to a ghost. Fighting the urge to think of their name, tell them your daily grievances like you’d always do. Reliving the gut-wrenching bombshell every single time until you don’t really remember what’s missing, just the colossal, gaping hole left behind.
There’s regretting. The “what ifs” and “should haves” bounce around your mind until they pound like angry fists against your skull. It comes back in little spurts and pours down in shameful raindrops that soak your brain. Your worst moments play back in a beautifully miserable compilation, and you’re struck withs the excruciating fact that you knew better but didn’t do anything.
There’s fuming. You curse the world and everyone in it. Toss around blame like it’s a kickball on a playground. Ride the spinning carnival wheel of anger and guilt and shame. Screw those who have what I don’t and all the people it should’ve been. Screw this stupid country and all the people whose fault this is. I hate everyone and everything and all the things I used to love—I hate them, or they’re gone, too.
There’s reeling. There is no Before. There’s just this. Only trudging through murky waters and the fogginess of those nighttime hallucinations that seem all too real. Every now and then there’s a rumbling in the stomach, but it numbs if you wait long enough. I imagined my body to be a cavernous gorge, the wind rumbling through the rocky cliffs, clashing into grumbling rocks with heated breaths. I wondered if I’d sink down into the bed, if the blankets would consume me, smother the wind within me, bury me under if I waited long enough.
There’s lying. And hiding. You lie to yourself and everyone you know. Lie to strangers on the Internet that it’ll get better. Paint those pretty smiles on plastic cheeks and get good marks because that’s all they really care about. Go through the motions, you’ve done this before. Make a good show, you’ve always loved theatrics. Tell them a lovely little story and brush it all off. Oh, what a great actress you are!
There’s un-remembering. Memory is the curse of the living. You shut out everything that happened and everything that’s happening. Shut out who you were and who you are. Blank out all the faces that haunt your memories and drown out all the voices you once knew until they’re just background noise. Let yourself sink into that dark void because it’s more bearable than anything that came before.
There’s failing. I sit in her seat but I can’t fill her shoes, every step I take, I’m bound to lose. I can’t help these people with the heavy eyes who just want something to do. All their kindness towards me is because of her. I was never the socialite, I’m horrible company, too. I can’t light up a room, that was always her. So don’t dare ask me to make that dish for Thanksgiving because I don’t know the recipe, she’s the one who always made it and I’m not her replacement.
There’s forgetting. The ironic panic that fills your chest as you forage through your mind for lost treasures. Where did that pink cat knickknack that sat on the television mantle come from? It was from a vacation she went on, but was it Puerto Rico or Mexico? And what was in that stroganoff recipe, I know it had cream of mushroom soup, but did she include broth? She never measured anything, and I never wrote it down, and I tried to make it but it just wasn’t the same. And did we ever watch that movie together, what did she think? What did she say? What was the name of that friend she mentioned? There’s no one to ask…
There’s seeing. That newfound vision you can’t shake. Grief is like a pair of glasses you can’t take off; you see the world differently, even though nothing’s changed. The earth turns and seasons change but you’re stuck seeing everything for all its ugliness. Seeing all the ghosts that lurk in the darkness. And the newfound blindness that accompanies it. That darkness that invades your mind when you think of the fabled future. I used to have that picture—the one people have when they close their eyes and cast themselves into a far-off land and see themselves older, hopeful, wiser. When they imagine what’s to come and pour their hearts into making that beautiful dream a reality. I don’t have that anymore. I’m losing grip on it. I can’t see myself. Or her. It’s all gone.
There’s accepting. The surrender as you swallow this new reality. It’ll always be like this. I’ll always be like this. There’s no going back and no Before. Just this. I’m not the same person I used to be. I don’t really remember them anymore. They’re a stranger. A distant memory, like an illusory figure in a far-off dreamland. I’m resolved to this. To pain. To emptiness. To numbness. To nothingness. To moving on. To forgetting and starting over. I’m tethered to the sickly motion of time as it hurls me forward, stumbling into some great unknown. I don’t want the same things I used to. My dreams are smaller now and I think I can be okay with that. I have to be.
Sometime in the inescapable Now. There’s realizing. Those sorrowful faces you can’t help because you don’t even know where to start. But it’s okay because they look at you with that same sadness. Those voices that tell their stories and make you brave enough to tell yours. Those eyes that look at you not with pity, but with understanding. That recognition of mirrored loss and struggle and grief. And maybe you’re not the only one with newfound vision. There are those people that hear you and see you and sometimes that’s enough.
Gillian is currently pursuing a B.A. in Communications with a minor in English at Northeastern University. She enjoys creative writing and hopes to work in the television industry after college.
Read more from our Writing to Heal: College Student Stories series.
By Alisha Karuvannur-Sandhu
Summer is the loneliest season. I thought with age I could escape it, but there I was, alone in a hot not-home, and I was so afraid to fall again, down and down and down.
~
In grade school, summertime brought a big empty house with broken air conditioning. Strict working parents kept me inside, playdates sparse, and most of my time was spent in quietly overwhelming solitude. I ate hot sticky peaches and watched America’s Got Talent and fended off the heaviness that always showed up in slow moments. It felt never-ending, and when escapism failed me, I sat wondering if this was all life had to offer. I thought about God and the afterlife, and how dreadful it must be to go to heaven and have to experience pleasant nothing forever.
The loneliness always ended in the fall, though. It was the one thing I could count on, school starting again, my sense of smallness dissipating. Companionship breathed life into my lungs, and I became myself again, studious and motivated and together (as together as a child can be). I left that peach-eating cocoon on the couch to rot; I emerged whole and new and ready for the world
~
When the pandemic hit, despite my best efforts to stay occupied, it wasn’t long before I became startlingly aware of how big the world was and how little I felt. The warmth of my bed called to me. The air was balmy, yet I wanted nothing more than to bury myself underneath the comforter and let the heaviness of gravity wash over me, weigh me down until I sunk into my mattress, through the bed, through the floor, down below the dirt beneath my house, down all the way to the center of the Earth.
Every night, I would click off my screen after a who-knows-how-long session of scrolling, left with a buzzing sensation in my head. As I sat alone in my bed, I felt a familiar crushing solitude creep into the room. Is it hot in here?
Vague unease brewed deep inside my chest. Once they were unlocked, all these uncomfortable sensations seemed to follow me everywhere, sometimes lying dormant but always under the surface.
~
I woke up one morning unable to breathe. I checked the time on my phone. Just past 6am.
Inhale.
Exhale.
There was no use, it was too shallow. How could this happen? I had been so careful. My chest tightened and my heart fluttered. Heaviness reincarnated into something new. I started to feel lightheaded. Surely my blood oxygen levels must have been abysmal. I felt my pulse rapidly speed up.
Thump thump thump.
My mind raced with questions. Do I go tell Mom? Do I go to the emergency room? What if I gave it to the family? What the fuck have I done?
I had to get up and let her know. My father was gone already (he worked upstate and was only home some weekends), but I listened at her door and could hear her getting ready for work. I knocked quietly, then with more urgency.
“Mom?” I called, my voice cracking.
After a few long seconds, she opened the door.
“Why are you up so early?”
“I think I have COVID.”
“What? Why?”
“I’m short of breath.”
“Don’t be ridiculous.”
“I can’t breathe, Mom.”
My face contorted against my will. Fat round teardrops fell out of nowhere, and suddenly I was bawling into her shoulder like a baby, unable to stop. Shhhh, it’s okay. My face was caked in tears and snot. I gasped for air, but it was like breathing in a vacuum. You’re hyperventilating. You’re having a panic attack. I watched her hurry to the kitchen and return with a paper bag. She held it to my face as I heaved in and out.
A few days later, my test results came back negative.
As my summer continued its descent into malaise, I found refuge in the fact that I would be back in school soon, with classes to keep me busy, friends around me at all times, and bustling city air to cleanse away this steady taste of isolated suburbia. I spent most of the days lying in bed with the blinds shut—sunlight was too bright—scrolling through my phone or simply falling in and out of half-sleep. I reminded myself that fall would come again and revive me, as it always had before.
Rebirth was just in my grasp when the stories started coming out. All these kids going off to college only to be packing everything back up four days later. I joked about it with my friends, but the concern was real and growing. Then, one by one, they decided not to come back for the fall. Each housing cancellation was a light going out, until I had only one roommate left. A week before I was to fly back, I got a text from her. I’m sorry, Alisha. The last light fizzled into blackness. I looked out ahead at the dark apartment waiting for me.
I thought about staying in California, but I couldn’t do it. I had to get out. Change seemed my only hope of becoming myself again. I was going to make it work.~
The dark roots of something insidious were starting to take hold. Just a few days into the start of the fall semester, my senses began failing me. I sat in neurobiosomething listening to the professor speak sounds I couldn’t hear. I could feel the words go into my ears, I could feel my brain as it passively watched them float into my skull and spat them right back out, raw and jumbled and unprocessed. I narrowed my eyes at the slides on the projector screen, at the text that surely had to be English. I must have forgotten how to read, the way the letters amounted to gibberish.
Day after day, my comprehension diminished. Instead, I became acutely aware of the fluorescent lights humming in the classroom. My head buzzed in unison. Everything was too bright, always. Too hot, too. I shifted my weight back and forth in my chair, tugging at the collar of my shirt and stroking my sternum, my arms, my hair. Swallowing became manual; I compulsively gulped til I forgot how and would choke on my own dry throat. Day after day, the world became increasingly unintelligible. I was consumed by the thought that I was trapped in my seat with no escape. I feared my body would cease to function unless I kept it in check. Breathing was no longer autonomic; I had to shakily force air in and out of my lungs. I pressed two fingers to my neck to make sure I was still alive, that my heart hadn’t spontaneously decided to shut off. Dread shrouded my head like a fog, made me deaf and blind, day after day, day after day, I was falling, faster, harder, day after day. Eventually I stopped going to classes.
I took up shelter in that big empty apartment. Barely furnished, no air conditioning. I let oppressive heat overtake my body. A proverbial sinking feeling nudged me towards the couch, where I sat watching Zoom lectures, where I ate my paltry meals, where I slept less-than-soundly at night, where I could not fall, only sink, slow and steady. Although I felt barely alive, I found a strange assurance in my deadened state. Familiarity bred affection; I became so well acquainted with solitude that I developed a sense of dependency on it, the only stability in my life. I isolated myself from the world, scarcely communicating with friends or family, avoiding the news, embracing seclusion. Days blurred into each other, dishes piled up and up, the air outside grew frigid. I stayed glued to the cushions through it all, wrapping myself in blankets. Roots gripped me, enveloped my cocoon-bound body. This wasn’t how things were supposed to happen. Time after time I had broken free without exertion. Where was my renewal, my sacred rebirth? Now I lay there immobile—a carcass decomposing.
Images of my destruction, in endless variations, flashed through my brain like strobe lights. Flesh torn apart. Water rushing into my lungs. Carbon monoxide silently putting me to eternal sleep. Medleys of pills bubbling in my stomach, poison coursing through my veins and shutting down my organs. Jumping off a bridge and into the Charles—one final, irreversible fall.
Things got too bright and too hot and too loud and too much one night, and I concluded my only options were to get help or die. I thought of Mom. I wondered how long it would take for her to realize I was gone (she would surely be the first to realize). I wondered who would have to find my decaying remains, who would have to call her to relay my fate. I wondered what she would say at my funeral. I wondered if she would blame herself, if she would pick apart my life trying to find where she went wrong.
I dialed her number with tears in my eyes.
~
With effort, heaviness, in all its incarnations, always proves fleeting.
Alisha is a third-year student at Northeastern University majoring in Philosophy, with a minor in Health, Humanities, and Society. She plans to pursue medical school after college and is particularly interested in healthcare ethics and narrative medicine.
Read more from our Writing to Heal: College Student Stories series.
I have a friend who works for an insurance company, just like her mom did for over 35 years. Surely, overhearing all those conference calls must have influenced her. One of my best friends is going to medical school. She will deny it in an attempt to see herself as independent, but it is because she wants to be like her parents, who are both doctors. My other friend is majoring in pre-law; it is no surprise that she grew up watching her father defend clients in courts. Children often follow the paths of their parents. There is an intangible level of influence and shaping that happens from the environments we are in.
My father sold cocaine out of the local town bar he owned while evading taxes for a living.
~~~~~~~~~~~~~~~~~
I grew up as a kind child who always spoke respectfully to adults and whose teachers saw me as responsible enough to deliver the attendance sheet to the office some mornings in elementary school. I was a good kid, who worked hard in school and played nicely with others. I am also a demon who was easily enraged, who wanted to solve problems with fists, who started drinking only a couple of years after reaching the benchmark of double-digit ages.
I grew up mainly in my mother’s house, who is, by all accounts, the average suburban middle-class mother. I spent some time at my dad’s house, and it shows. I am not sure where I stand on the nature versus nurture argument. Maybe my father’s genetics created this conflicted monster, or maybe it was my court-scheduled visitation that cultivated delinquent urges. I can’t say for sure where it comes from, but my incessant frustration as I suppress one of my identities is palpable.
When I was about nine years old, I was told that alcoholism is genetic-- I’m fucked.
What age does alcoholism start? Surely, a desire to deal drugs and hang around seedy bars must be genetic, too. When do I start carrying my weapon for protection?
I grew up asking myself when the bad side would set in. I thought about how disappointed my mother would be to see me follow my father’s path, instead of hers, despite her tireless efforts to protect me from his influence.
~~~~~~~~~~~~~~~~~
I was ready to branch out and meet new people after being tired of the same old judgmental faces in middle school. I was 13 and ready for something new, and I immediately found a group of upperclassmen that was uniquely fun. Each of them came with their own issues of problematic families, struggles to graduate school, or trauma from sexual assault. Regardless, I enjoyed their care-free spontaneity that let me experience their impulsive joy. One night, I came home around three in the morning with a bloody gash on my leg. I tried to hide it from my mom, but she saw the stained paper towels in the trash.
“Megan, what is wrong? Why are these paper towels covered in blood?” she asked with aggression and worry.
After stopping by to pick up the shrooms my friend Stef was buying, we decided to go TP a house. The cops pulled up, so I ran into the woods. I slipped on a muddy patch and my leg got cut. But it’s fine because the cops didn’t catch me.
“We were playing basketball yesterday and I got fouled and fell so I cut my knee,” I said, a little too quickly. I could not bear to see the mournful look on my mother’s face if she knew the types of activities I considered fun. I was not ready to host the funeral for the successful child she tried so hard to raise.
~~~~~~~~~~~~~~~~~
My knee healed and I continued to act recklessly with friends during my first year or two of high school. After this, my older friends graduated high school. This left me more time to spend with other people, mostly my high school soccer teammates, who valued good grades, loyalty, and liked to watch movies on the weekends. In an attempt to fit in, I bought fuzzy flannel pajama pants to watch movies at their houses. I started to fall in love with the comfort of the cotton pants on Friday nights. I traded in the minty flavor of Fireball Cinnamon Whiskey for Junior Mints, and the pungent smell of pot for a lavender diffuser.
Moving forward, teachers began to see me as a hardworking athlete and not a careless kid, wasting intelligence and athleticism. At times, this identity felt stable. Other times, I craved the exhilarating experiences of my early high school days.
Ultimately, I began to root my identity more deeply in wholesome behavior, rather than recklessness. This became a constant for me until graduating high school. It remains a piece of my identity, with only a few interruptions during moments of stress and change. These moments have become shorter and less frequent as I convince myself of my identity.
The last time I had the urge to drink heavily to tolerate the stressors of life was yesterday. The last time I drank heavily to tolerate the stressors of life was four years ago. My interest in becoming the shady character perched on the local bar stool with an oversized black backpack filled with various illegal substances has subsided. My need to solve problems with violence is usually nothing more than a fleeting thought.
I do not act the way I once did. I do not partake in the activities I once pictured myself destined to do. I am 23 years old. I earned a scholarship to play college soccer and I am graduating with a bachelor’s and master’s degree in criminal justice. With my degree, I will soon prevent crime, I will rehabilitate individuals from their poor choices, I will guide youths who feel their family has set them up for failure.
~~~~~~~~~~~~~~~~~
My experiences are not unique. Every day there is a child struggling to suppress their conflicting identities. I’ve learned it is possible. While nature and nurture shape us, they leave us with options. No one is helpless in the path of their lives. Each day we must choose to be the person we want. We are so much more than a product of our genetics and environment. We have the agency to choose our own outcomes—destiny is a multiple-choice exam.
The author is a fifth-year student at Northeastern University soon to graduate with her Bachelor’s and Master’s degree. She was a varsity athlete at Northeastern and is looking to continue her engagement with athletics after graduation.
Read more from our Writing to Heal: College Student Stories series.
by Theresa Chung
Korean Romanization - English Translation
Halabeoji - Grandpa
Halmeoni - Grandma
Samchon - Uncle
Maknae-imo - Youngest Aunt
Kuhn-imo - Eldest Aunt
Umma - Mom
Appa - Dad
Unnie - Older Sister
Ban-chan - Side Dishes
As tradition, my family would fly from whichever New York airport that had the cheapest tickets to Fullerton, California every summer to spend time with my umma’s side of the family. It was never quiet with so many kids and adults in one house; everyday was eventful, whether we took collective naps on the cool floor or threw each other into the swimming pool.
Summer 2016 - Fullerton, CA
The last time I went to Fullerton for a vacation, I was fifteen-years old, a rising junior in high school. I was also having the worst experience with puberty, which had turned me into a terrible teenager. Every conversation with my parents ended with me annoyed at them for “never understanding me.” Umma still recalls how I always slammed my bedroom door.
On the last day before umma and I had to return home, I had to complete summer AP U.S. History homework that I had pushed off. I only realized I had spent the whole day writing when umma and halmeoni started to prepare dinner in the kitchen. I asked umma what we were eating. She said leftover ban-chan and rice.
I whined that I didn’t want to eat more rice and leftovers. I wanted something good, like fried chicken or grilled meat.
Umma told me to just eat what’s given. We weren’t going to make food since there were only five people at home. I now suspect it was also because umma didn’t want halmeoni to feel obligated to make anything, especially since the chemo was taking away the energy that had once let her spend days making me mujigae-ddeok, my favorite rice cake, which requires sitting in front of a fire in 80-degree weather to make. I didn’t think to consider halmeoni’s health, putting my desires before her.
I ignored umma’s words and scavenged for food. I walked over to the wooden pantry. Success. A box of Kraft Mac and Cheese. I grabbed it and told umma this was my dinner. She gave up and told me to do whatever I wanted.
Umma set out a few plates of ban-chan on the table, which was strange because in past years, halmeoni would cook enough to cover the entire table. I re-read the directions on the box as I cooked the mac and cheese.
Dinner felt gloomy. As the last meal I would eat with halmeoni, the mac and cheese wasn't good. I regretted eating it instead of halmeoni’s ban-chan, but being a teenager, I wouldn’t allow myself to show umma I made a mistake.
The last night of the last vacation in Fullerton was uncomfortably quiet. The house had always felt empty once samchon decided to move his family away and maknae-imo didn’t sleep over as often. There were no giggles from cousins who couldn’t sleep, or songs sung by my halabeoji.
The next morning, I found myself holding back tears as we packed for the airport.
Halmeoni woke up early to make sure we had packed everything. As we put our shoes on, she shoved a package of coffee milk boxes into umma’s purse, reprimanding us for forgetting it. We had bought it at the supermarket days before, halmeoni taking notice of how much I liked it.
I gave my halmeoni a last hug, feeling how she was still soft to hold. That was the last time that I touched halmeoni, as I couldn’t bring myself to touch her while she laid in her casket.
Like every summer before, halmeoni stood outside and waved as the car pulled out, my eyes wet with tears that I was too ashamed to let out.
At the airport, umma and I poked straws into the six cartons of the coffee milk while in line for the security check. We knew there was no way we were going to throw away the milk and so we chugged it before we made it to the scanner.
May 2017 - Albany Airport, NY
Umma decided to miss work for four days to fly to Fullerton. Halmeoni was no longer on chemotherapy and was forgetting who her children were at times.
Appa and I picked umma up from the airport the day I took the APUSH exam.
Only three days later I received a late-night phone call from my cousin, who I have heard cry just once in my life.
The three of us returned to the airport at dawn on the 9th, only this time we were all flying to Fullerton. It was the first time we had ever purchased such expensive tickets and paid for the overpriced airport parking fee.
Spring 2017-2021 - Experiencing Guilt
Every day since May 8th…
I have asked myself why I chose to eat the mac and cheese that night. I ask myself when I crave mac and cheese. I ask myself when I see store-made mujigae-ddeok. I ask myself when I ask umma to make my favorite summer food of oi-ji, pickled cucumbers and she responds with how halmeoni was the only one who could make it how I liked it, and then we fall silent.
I have hated my fifteen-year-old self for putting her stupid pride and teenage angst before everyone else. Because of her, I lost my chance to eat halmeoni’s food one last time. I don’t remember the last thing I ate that halmeoni made. I only remember that I ate the dreadful mac and cheese.
I have felt useless. For years, I never knew what type it was nor did I ever ask. Umma told me that it was simply cancer. That’s all I was to know.
For years, I’ve asked myself, why did umma never tell me what it was? I never knew what was happening, what symptoms were present, that halmeoni was tired… Umma and her siblings talked to each other about the appointments in Korean, words that I was unfamiliar with even in English and thus words that I could never understand. Leaving me to ask these questions to myself, umma decided to depend heavily on unnie the whole time.
Unnie was older, smarter, and preparing for medical school, so she was more familiar with the terminology. She helped translate during halmeoni’s appointments even though she was busy studying for the MCAT. I knew nothing about the human body or cancer. I avoided phone calls, self-conscious about my Korean and fearful of embarrassing myself. I didn’t do anything to help halmeoni.
Fall 2018 – Interstate 90, MA
While driving home from college in Boston, I finally mustered up the courage to ask appa what the diagnosis was. Liver cancer and… Throughout the conversation, I also realized why I was never included in conversations about halmeoni. It wasn’t just the cancer, it never is. My umma’s side of the family dealt with many struggles that come with being immigrants and being human. Life was never easy for them, but that was nothing they wanted to make obvious to the children. This is typical within Korean families as we Koreans are very prideful people. The adults in my family have endeavored to allow their children to enjoy blissful, naive childhoods, and to some extent, I feel gratitude towards their efforts.
2019-2021 - Processing Grief
My anger towards umma for not telling me everything about halmeoni has long dissipated Even when halmeoni was dying, I focused on myself. I hadn’t thought about how my umma had to hear her own umma had died just days after she had left to go back home to work. That my umma had to spend years living so far away from her umma while her siblings were always there with her. That my umma had to deal with her daughter being so cruel at a time when she needed support. Only years later have I realized how selfish I was.
Since May 8th, 2017, I have come to college in hopes of becoming a doctor. Sometimes as I do homework that mentions metastasis, I wonder if it would’ve been better if halmeoni had lived longer. But would I have felt better after taking heavy science lectures? After reading research papers full of jargon? Would I truly have thought I was doing something to help, or would I have continued to feel useless in this uncontrollable, solution-less situation?
I don’t know, but I do know that I must forgive my younger self for choosing to eat the mac and cheese that night. As much as I resent her for her decisions, my younger self is still me. She deserves to be forgiven.
As a fifteen-year-old, I knew nothing about death, so I didn’t know how to process my grief. But on this never-ending path to forgiveness, I have learned that there is no proper way to experience grief. I realized it years after halmeoni left before I could show her a better version of myself. And I realized it weeks after kuhn-imo had ended her own fight with cancer and decided to leave us for halmeoni.
August 2021 - Growing Up
I didn’t realize it until a few weeks after kuhn-imo passed, but I didn’t hate myself as severely when she died, despite feeling the same frustration towards oncologists and money, or lack thereof. I questioned if it was because I unconsciously liked halmeoni more and if I was a bad person, but it wasn’t that. Guilt hadn’t shrouded the grief I felt for her passing. I mourned kuhn-imo without being overwhelmed with selfish thoughts. I was able to send her off in a more peaceful manner. Of course, I regret being unable to mourn for halmeoni in a better way, but I believe she would feel proud, knowing that I am trying to make peace with myself.
Theresa is a fourth-year student attending Northeastern University in Boston, MA. She is pursuing a major in the Health Sciences as well as a minor in English Writing. She hopes to attend medical school and also to continue to write both nonfiction and fiction.
Read more from our Writing to Heal: College Student Stories series.
By Ashley Lynch
My New Hampshire Colonial-style house sat at the edge of a cul-de-sac, and this is the house we still live in today. Despite regular renovations and repairs, I sometimes feel the house has aged more than I have in tangible years, and attempts to fix the house have resulted in an altered-kind-of Botox look after a few too many surgeries—different from the original, fixed but in an unfamiliar way. When I was younger, the cul-de-sac seemed expansive, and to leave the end of my street was not something I pondered without the presence of my family.
When I was young, my mom was my only caretaker and main source of comfort, to the point where even being close to her could serve as a security blanket. As a shy kid, I would sometimes attempt to escape meeting new people or interacting with strangers by hiding near my mom's feet, covering myself with the bottom of her summer dress as a makeshift disguise. Her wardrobe rotated through a few calf-length, heavily-worn dresses, some I recognized as purchases from Walmart and others I knew to be gifts from the maternity section from my aunt. My mom struggled with holding weight around her midsection, and I remember her initial offense and later realization that these clothes helped to shape her form a bit more nicely.
As a toddler, I can recall I would only venture to leave the house on my own if I could not immediately find my mom. One hazy, humid summer morning, my twin and I heaved open the front door because we did not see mom and were met with the feeling of insecurity, of momentary anxious abandonment. It was early enough that clouds still covered the promise of sunlight. My bare feet were instantly chilled by the cool nighttime still clutched by our stone front steps. I leaped to the neighboring grass for temperature relief and decided I preferred the slightly more pleasant feeling of sticky, damp grass; the layer of dew provided the grass with increased shear force for the blades to get stuck between my stubby toes.
Mom was talking with an unfamiliar technician, and Sarah and I were relieved to have found her. “Uppie,” Sarah repeated our familial, conditioned word in asking to be picked up, to be comforted after a few moments of lostness without Mom’s presence. Our gray house was the most familiar physical place I knew, but this familiarity lost its relief when our emotional source of comfort was not there, making us cinnamon toast or joining us to watch cartoons. Sarah outstretched her arms; even though Sarah was asking for this affection, mom’s physical comfort was not a question, and she was swept up before I could fully raise my arms as well.
“Uppie,” I repeated in turn. I was the second twin to be delivered and sometimes still following in Sarah’s footsteps. “No,” my mom looked down for a moment, still in conversation with the stranger, “I can’t pick you both up anymore. You’re too heavy. Sarah needs this more.”
Sarah’s autism diagnosis was recent, and one that I would not fully understand for many years to come. As a toddler, it was implanted in my brain as a lesson, as essential as the alphabet and number line, that Sarah faced extra difficulties and needed more attention and support. By the age of four, mom told me I was old enough to get dressed on my own, but I still found it hard to differentiate the neck and arm holes or feel confident in deciding which clothes matched. We are twins, and eighteen years later Sarah receives help getting dressed to this day.
Growing up with Sarah requiring an institutionalized level of care for years, I was frozen in this yearning, young pose, with my arms still reaching up. I found myself reasserting my need for attention as we grew up. Sarah required more care on all levels, and simple communication with my mom could seem unfathomable. My arms attempted to stretch a distance of a thousand miles, and this distance grew even when my mom and I existed in the same home.
In our kitchen, there used to be a bar-top counter attached to the longest wall, with two wooden chairs placed beneath the pale counter, one stool uneven and rickety in its balance. Covering this wall was a large mirror that made the kitchen seem larger than it actually was; some of the repairmen who entered into the house would express their initial confusion, thinking the mirror represented the other half of the room or an open table instead of a sheltered countertop. My mom spent the majority of her time home typing at this space. Although this mirror is no longer in the kitchen, I can still envision my mom’s reflection here: her slightly-bent posture, how the wrinkles on her forehead and typing hands were less noticeable in this image than face-to-face, and her utter concentration on the screen. When I would attempt to speak to her while she was here, she would look back at me through the mirror, or answer without shifting her gaze from the laptop. Over time, I longed for eye contact that didn’t take place through a reflection.
I know now that this stretching of distance between us was unpreventable, and due to Sarah’s circumstances, my mom was truly not available. I am not sure whether she was aware of this.
After her initial diagnosis, Sarah was assigned to work full time with an in-house behavioral management specialist, who operated with support from a larger behavior management team. Despite the continued efforts of this support system, over the years two of our car windshields were shattered, one storm door was destroyed, and more holes than I can recall appeared on the wall from the force of Sarah’s fist or head. Sometimes the holes would be patched up in a timely manner, but other marks of chaos lingered, and I struggled to shuffle visiting friends past these damages. I found myself arranging cafe coffee dates or simply agreeing to hang-outs I did not have to host. Growing up, the physical shape of my house felt like a part of my identity, like the clothes I chose to wear or food I selected to eat.
Now that I am in college, I am not home often, but one week in the summer when I stayed in New Hampshire, I woke to screaming downstairs. In the past few months, Sarah had been experiencing psychosis, a personality shift, and tested highly positive for Lyme disease. The latter can result in neurological damage. In the process of trying out various antipsychotic medications, Sarah experienced hallucinations as a side effect. Mom had gone out for a quick trip to the grocery store, and when I found Sarah, I discovered she believed that a truck had crashed into our living room. Since moving out, I sometimes find it startling how out of touch I have become to Sarah’s ongoing daily needs that mom provides.
College has also given me space to reflect on my upbringing, and when I return home, I can better understand the choices my mom made as a parent as well as the tension she carried and her constant closed-off nature.
During that most recent trip home, I saw a large hole in the wall of the upstairs hallway, which I had learned via text a few weeks before occurred during a challenging time with Sarah’s hallucinations. Viewing the picture of the wall via text, I was initially upset that the hole appeared next to my bedroom door. Seeing the contortion of the wall in person, my heart sank, as I was able to fully make the connection that Sarah’s emotional distress, confusion, and images originating from her mind caused her to hit her head against the wall in frustration.
I no longer associate the physical structure I grew up with as strongly with my identity. It is still a large part of me and my early memories, but the broken facets of this location serve as indicators of endurance rather than of irreparable damage. I know that this hole in the wall has still not been plastered, but I have come to accept both the dynamics of my family and to recognize some things are not an easy fix.
Ashley is a junior at Northeastern University studying bioengineering with a concentration in cell and tissue engineering, and a minor in writing. In her free time, she is a member of Biomedical Engineering Society and enjoys yoga and watching cooking shows.
Segment 2 of 6 in our Soul Chronicles for the Chronically Ill series.
By Shaler Wright
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.
Go here for more episodes of our Soul Chronicles series.
