Confluence of Coronavirus and Chronic Illness

During the global pandemic, we count the number of hospital admissions. The number of respirators. And the number of deaths. We may count the days of quarantine. Or the days since our last morning swim.

We count how many armfuls of laundry we do in the hours before dawn, when the house is quiet except for the hum of the washer-dryer in dialogue with the parakeets in my kitchen. The birds were asleep or silent until I pushed the “on” button on the dryer. The rhythmic spinning of the clothes and towels must be an invitation for the birds to sing. But, to me, of late, even their chirping is perceived more as noise than melody.

During the pandemic, we count how many dishes we wash, how many toilets we clean. With housekeepers banned from apartments on the Upper East Side of New York, I am forced to relearn critical skills relinquished decades ago, as I was privileged to choose instead to practice medicine and the mothering of my offspring. Precious time is required to sustain the home as a sanctuary. After all, it is the only sacred space remaining where we live unmasked, where smiles are exposed.

We count the number of rolls of toilet paper or paper towels in our storage closet. They sit in silence. Perhaps they wonder why suddenly they have become so precious a commodity.

We count the money we have lost in a fragile economy that is both volatile and on pause all at once. All but what is “essential” is shut down, instructing us to redefine what is indeed indispensable.

We have learned the power of decelerating. The vulnerability of hurry.

We have been changed. Marked like Cain after Abel’s murder. Indelibly.

We have been changed. Marked like Cain after Abel’s murder.

* * *

During the pandemic, which has been superimposed on my young daughter’s chronic illness, I am counting so many things. Yet, I have lost track of Time. Pandemics wipe out not only individuals, but also Time, our capacity to record time. Disoriented each dawn, my alarm clock reads 5:10 am. I wonder for a long moment what day of the week it is. Groundhog day. Hair tussled from sleep, I wash up and catch the blue of my eyes in the mirror that twins the blue of my daughter’s eyes. Some of my features, timeworn versions of hers. I learn from Elly each day that Time not in pain is the precious currency. In the context of my daughter’s debilitating syndrome, I forfeit the need or desire to count or sequence the hours, but, instead, I appreciate the moments unscathed by ache.

If my daughter’s pain is not crippling due to an unprovoked knee, hip, or tarsal bone dislocation, we walk, knowing each stride is a gift. Her syndrome does not let us forget. At the end of a day, we meditate and perhaps even recite a prayer. She instructs me to share one thing we are grateful for that day. We do not ask for longer spans of time in which to make meaning. In the context of Ehlers Danlos Syndrome (EDS) or the pandemic, that would be hoarding. This mother-daughter nightly ritual persists even during a pandemic. Especially during a pandemic.

I wake up early each morning disoriented without the rhythm of the Sabbath. Because I am on family medical leave tending to my daughter’s needs, I miss my three cherished days a week of meaningful work in breast cancer radiology and my ritual morning swim. The pandemic has precluded access to pools. Stripped of routines, my sense of time has lost its power to orchestrate. Time, once the conductor par excellence proffering a context, a harmony, a way to make all the pieces fit together. Structured days, routines, akin to instruments in an orchestra, collaborate to make “music” in our lives.

However, I return to thoughts of Elly, and I identify with the mother in the pediatric palliative care unit, who tells the doctor during the pandemic: “Welcome to my world.” I live now the way I have been conditioned to live with my resilient daughter before coronavirus was given global reign. Limited. And yet not. We live for today. Making the day, whatever day it may be, rich in potential for growth and meaning. I function as the “brace for her soul” even if I am powerless as physician-mother to maintain the integrity of her body.

I function as the “brace for her soul” even if I am powerless as physician-mother to maintain the integrity of her body.

On rare mornings, when Elly awakens from a deep slumber with sufficient REM sleep confirmed by her Aura ring, one of her many bio-hacks, she is smiling. (Elly is her own experiment, an N of one. With a rare syndrome, she has no other choice.) Her smile conveys that she is so proud of her sleep quality. Grateful she didn’t dislocate her shoulder when she rolled over in her sleep and that her wayward GI tract is cooperating. Morning is almost always her favorite time of day. It is when her body functions optimally. And I remember “one day at a time,” otherwise known as “Elly time” is holy.

Together, she and I and her father make meaning “one day at a time.” Every day we can. Most individuals are blessed with three tenses. My daughter is bereft of a near perfect childhood past that is, of necessity, repressed. And a future that has been kidnapped (hijacked) by disability.

I learn from just being with Elly to regain my bearings, even in the context of a pandemic. I recognize that the precariousness of her body mirrors the precarious sentiment felt by so many due to the pandemic that has gone global.

There is nowhere to escape. Tomorrow cannot be anticipated or planned. That is precisely how one lives with a chronic illness. And in the context of a global pandemic. The world has joined our ranks.

* * *

I miss my swim during the quarantine almost more than I miss my father who left this world two years ago. I dream of being able to swim miles religiously each morning in blue waters. It keeps my body strong, intact. Each part of my anatomy is coordinated. In the to-and-fro of laps, I found a respite from my daughter’s suffering. My mind effectively distracted by the rhythm. My swim, a dance that was mine to choreograph. There were no disturbances in the field. Water is so forgiving. Forsaking my swim during the forced quarantine, I have lost the precious space in time I used to craft the first line of poems that I eagerly anticipated planting that day. Hoping for a harvest. In the water, hope endures. I moved, unafraid of falling.

* * *

My husband and I bear witness, in perennial close proximity during the quarantine, to the need to quell our daughter’s pain, mastery over which overwhelms Elly’s day, Elly’s hours. There is little time left over to simply live.

She finds refuge in an infrared sauna blanket while listening to a meditation app to enhance its impact. Elly sits on an exercise ball in front of photo-biomodulation therapy, a Joovv Max quelling nerve pain, making drinking her liquid-only dinner better tolerated by unstable TMJs, while she listens to her audiobooks. Bathing in Epsom salts become a privilege if her hips are stable enough to allow her to sit in a bath. She uses pneumatic compression devices to circulate blood that foolishly pools in the veins of her legs. The walls of veins in her legs composed of faulty collagen sadly increase their capacity to her detriment. She utilizes cupping to quell her jaw pain. Electrical stimulation for her leg muscles in spasm. She self-injects peptides praying for a panacea and lies supine on ice packs when needed. (They are always needed.) Religiously she engages in daily physical therapy, often isometrics, as her body allows for little motion without injury. During the pandemic, she zooms with her physical therapist, who has become her closest ally as we are quarantined by Ehlers Danlos Syndrome, compounded by the coronavirus.

When I go into her room to say goodnight, the last thing she tells me before she retires to her room, knowing she cannot have children of her own, is “Mom, I will pay your love forward to others in my own way. I promise.”

“Mom, I will pay your love forward to others in my own way. I promise.”

I close my eyes acutely aware of a miracle.

* * *

However, I cannot hug her impulsively. Her neck and shoulders are too unstable. Hence I do so gently, with attention to every gesture. She miraculously conveys gratitude at the end of an impossible day. We read a book aloud — The Year of Wonders about the Bubonic plague in the 1600s. Perhaps it makes us feel less alone during the pandemic. And the prose is beautiful. We are drawn into every beautiful sentence. We look into one another’s eyes and acknowledge that we have been mutually touched. Words are our life raft. It is how we survive. She cannot hold a book on her own. I read aloud or Audible reads to her as she lies supine, hoping the occipital nerve pain will quiet. Yet, she listens attentively hoping to escape into someone else’s story.

Her gift of words so far exceeds my own, and yet she cannot execute the task as her young and elegant hands cannot reach forward to the keyboard without pulling on her unstable shoulder. Her neck cannot stay upright long enough. And leaning over to write, pen in hand — implausible.

Thus, volumes containing her poems are scripted in silence. Wordless poems that make me so sad. At night, I have to turn the air-conditioner on high, the noisemaker volume all the way up. Mimicking the sound of the ocean to drown my sorrow. A perpetual mourning for what once was a young girl with wide blue eyes and white blond curls in red glitter Mary Janes, who believed anything was possible. And, by association, so did I, her mother. At night, I mourn what could have been. There is no silencing the sadness. It is too deep. Too loud. Not deep like water, but like darkness. Not loud like ocean waves, but like thunder. Sudden and unwelcome.

During the day I am occupied, tasked by her body’s limitations to facilitate the few functions she still can do with partial independence, doing others for her on my own. It is a full-time job.

In the quiet of the night there is room for sadness. It fills my entire bedroom, drowning me with wakefulness in pre-dawn hours. When morning comes, I am exhausted. Night as challenging as day when your child is suffering.

The heavy weight of my gravity blanket is essential to still my body and my mind to facilitate sleep. Sleep, I once believed, was my only escape. But my daughter’s suffering intrudes on my dreams. Penetrates even the massive weight of the blanket. I try to hide. To run away. At least in the dark of night. But it is futile.

There is no escape when your child is in pain.

* * *

As the potency of the coronavirus subsides, the number of hospital admissions decrease, the death toll tapers, reentry is imagined and foreseen. I envy the world outside the perimeter of my home in which my husband and I dwell with a daughter inflicted with cascading limitations from faulty collagen due to one minor flaw in her otherwise impeccable genome. Together, we live in a quarantine imposed by EDS so much more severe than that imposed by the virus.

Together, we live in a quarantine imposed by EDS so much more severe than that imposed by the virus.

I, and her loving father, have promised never to desert her. She is the most resilient warrior I know. Hence, Joel, Elly, and I are cordoned off. An unbreakable unit. I am envious of the world dreaming about return, reentering their lives, however tenuously, hoping the virus and the recent eruption of racial violence

will remain at bay. We, however, remain scathed. Jailed by my daughter’s pain and disability. The summer sun sneaking through her bedroom curtains only half ajar is an unscrupulous tease, as I lay by her side and read to her James Baldwin and Flaubert. The bright star’s radiance, a painful reminder of all we cannot access.

I am learning from my daughter to distill what remains. Her resilience buoys my own. And Joel’s. It is easiest to witness in him. As she travels from the loss of a will to survive to the wearing of a small smile that bears the scent of hope, he travels with her. Everywhere she goes. So proud of his daughter for her staying power. An echo of his beloved mother, Elly’s namesake.

* * *

As the pandemic seems to taper, I listen to an eloquent friend’s (Aryeh Bourkoff) mandate to move “forward to extraordinary.” And we reenter the world, moving more slowly, with more intention. He cites we are forced to “reimagine the future rather than reassemble the past.”

I note that my daughter with Ehlers Danlos Syndrome has been doing precisely that every day for years. Our daughter’s past cannot be reassembled. Too many broken pieces. His podcast about the pandemic continues: “There has been so much loss, and no clear picture of when it will end or what our world will look like when it does.”

So too for Elly.

Like the virus that “has taught us a crucial truth: Status quo is not sustainable. Instead, adaptation is necessary for growth,” Elly’s dreams had to be redirected. “Adapted.” Dreams deconstructed by disability imposed by EDS. Doors that were once wide open for her are not even doors any longer. She is not in denial. She meditates and conditions herself to choose not to linger in the grieving for what has been lost. She puts what has been stolen away gently out of mind. In the driver’s seat, she steers away from sorrow and depression and focuses on loss. She ”adapts” and learns how to make the most of today. Carpe diem resonates. It is all she has, and she weaves meaning into each day, one day at a time.

Forced over time, and yet with an abruptness that is jarring to “reimagine (her) future, rather than reassemble (her) past,” she uses every ounce of her genius, her staying power to do precisely that. Her acceptance of harsh limitations, the starting point. She has “moved from a paradigm of abundance to one of scarcity.” In that sense, she is ahead of the rest of the world impacted currently by the pandemic. She excels at projecting ways of building a single day in which she can take pride. When she bids goodnight to her father and myself, she knows she did the best she could to both heal herself and to lend significance to the moment.

“The suspension of the normal has mandated a return to basics.” Elly effects that “return to basics” with a crazy grace. In my wakeful state and in my restless dreams, I stand in awe of my daughter’s capacity for rebound. Her persistent expression of gratitude. She remains calm amidst the never-ending transitions. She knows her attitude, her reaction to her syndrome’s insult is all she can control. She seizes those reins and rides through storms gracefully. Unimpeded by downpours, by strong winds that try incessantly to knock her over.

Our friend goes on with his podcast regarding reentry after the quarantine for Coronavirus: “The phrase ‘back to normal’ is inadequate.” There is no ‘back to normal’ for Elly either predating the pandemic. Reality demands so more of her. And “it will demand more of us.”

“There has been so much loss, and no clear picture of when it will end. Scientists are still determining how this disease even works or the destructively varied ways in which it can harm us.” Clinicians and scientists are similarly stymied by EDS. But, at least, with coronavirus, they are trying all over the world both as a concerted and a competitive effort to come up with a remedy or a vaccine. That effort by scientists for my daughter’s syndrome is invisible, like the syndrome itself. Economy drives science:When many are affected, trillions of dollars are invested. When a syndrome is rare, it is hard to get anyone’s attention.

“While we have stayed in place for over two months, the world around us has accelerated at a dizzying pace” during the quarantine. Elly has effectively witnessed the world around her accelerating at a dizzying pace for over a decade. She stared out her bedroom window for years as people walked to school effortlessly in the neighborhood when she could not ambulate. All the first and second boyfriends, proms, graduations, finals clubs, secret poetry meetings (to which she was always invited and even gifted with pearls she was supposed to wear over all-black clothing to the meetings somewhere on Harvard’s Square), she missed. The invitations enticed her. Excited her. But she stayed in place. Missing everything. She cannot go out by end of the day. Dusk, her midnight. Her body crashes by 5 p.m. The quality of her sleep essential. She was forced to surrender. She relinquished so much. But she figured out how to travel in her mind. While the rest of us, under quarantine, are “Zooming everywhere, but flying nowhere,” Elly has a lot to teach us about the art of stillness which doesn’t mean a void or absence of growth. To the contrary, she has learned like a cactus, in the wilderness, how to thrive without water. Nothing about Elly is stagnant.

“On the other side of this challenge lies the extraordinary” my friend closes his podcast about the indelible impact of coronavirus. EDS has coerced my daughter to incorporate that truth through its harsh insults to which she never stops seeking remedies in order to build a truly “extraordinary” life. She is a person who inspires and from whom much can be learned, even and especially during this global pandemic.

* * *

In this pandemic, quarantine divorces are up. So is home violence and suicide, depression, and substance abuse. Joel and Elly and I are one being. Inextricably bound by her pain. We suffer together and support one another akin to a teepee in a hard rainfall whose three sticks of wood serve as a foundation, as a buttressing. We lean on one another for dear life. And remain standing.

* * *

I walk with Elly and note the daffodils are bowing their heads on this grey afternoon. In unison. Perhaps they are ashamed to be spectators to a plague. Coronavirus may not be a direct threat to them, yet they bear witness. They are audience to ambulances singing their chorus in a minor key without pause. The yellow of the daffodils is fading fast. Just yesterday, they were upright and vivid in hue. Today, their posture bowed. They appear pale. It may be simply science unleashed. Gravitropism overriding phototropism on a day that the sun forgot to shine. Or perhaps the daffodils bowed are a congregation praying. Praying people will soon return to the lives they once knew before the pandemic. Forever changed. And yet return nonetheless.

I take deep breaths in bed lying parallel to my daughter’s body, my hand on the soft pajama of her thigh. The meditation app instructs us to hold on to the breath. And then to let it go. To hold onto our thoughts and to let them go. I practice and realize the power of my breath. I listen to the quiet harmonious chorus of our inhales and exhales as I learn to hold onto my precious daughter.

And to let her go.

Perhaps, that is all of life. Holding on. And letting go. The relentless blossoming of flowers in the spring, singing their presence with color as voice. Their hues stunningly painted on an otherwise grey, foreboding landscape. The flora know full well they are not everlasting. They will cling and hold onto the stem or the branch to which they are attached until they are forced to fade in color. Their petals fall like snow in the wrong season, relinquishing the vital connection to the tree or the solitary stem that sustains them.

Perhaps, that is all of life. Holding on. And letting go.

Coronavirus instructs each of us that to breathe is an art. And a gift. I learned that from my early morning swim. I learned it after open-heart surgery. And, once again, after a near-lethal contrast reaction.

As Samuel Johnson once said, “We more often need to be reminded than informed.”

I am reminded yet again of the power of breath in the context of the coronavirus. I search within and in Nature for answers, but I mostly learn from a daughter whose physical challenges are constant, whose cascade of medical complications have been multifarious and unmerited. Her pain is the only thing she can count on. For more than a decade before coronavirus was crowned “King,” limitations imposed upon her small frame were seemingly infinite.

Yet, her resilience is equally immutable. Something I count on.

She, like the daffodils, reminds me each day:

Redemption is possible.

Karin Charnoff-Katz, Breast Imaging Radiologist at Cornell/NYPH, mother of daughter who is a senior at Harvard with Ehlers Danlos syndrome.