I carry my story with me all the time: it is the container for the events of my life. The shape of this container is my interpretation of who I am. Over the past four years, this container cracked open, and I spilled out into what felt like a void.
I have a story to tell
My whole life I had been trying to get somewhere else. I had known myself as the person who works to grow into an improved, more capable, more secure me. The effort to do this was me. I made continual progress, exceeding the external measures that I had set for success, but they never delivered the satisfaction and rest I sought.
In America we are taught to dream. I dared to dream. I dared to do. I did, and I was proud of what I did. Then, in the midst of achieving professional success and financial security, these ways of orienting myself stopped working. Without criteria to set the agenda for my life and define who I was, I no longer recognized myself. Every day since I turned fifteen years old I had waged an all-consuming, private struggle to gain security and respect. Twenty-three years later, having attained a greater measure of both than I ever imagined, I felt profoundly lost.
It’s not the story I carried around with me for most of my life
I do not know where I’m headed or what future forms my story will take. What I do know is that I have an unquenchable (I have tried) desire to understand and tell the story that brought me to this point–even though my evaluative mind does not think it is worth telling. From the perspective of my familiar, striving self, I still need a lot of work to become presentable to the world. That view is still with me every day, and every time I sit down to write, it screams in protest that I should stop navel-gazing and accomplish something worthwhile.
The parts of us that scream need a hug, but they do not deserve an audience. When I step outside of the old, cracked container that used to hold me, I gain an unshakable insight: none of us earn the right to tell our story. Instead, we must begin to feel the contours of the container that has held us, examining those walls by exploring the forces that formed them. Then we must press steadily on the walls, drawn by the gravitational force of all we have exiled outside the container–outside this self we insist on. Eventually, the container will crack and we are reunited with the lost pieces of ourselves. We no longer feel alone because we are no longer confined to that container. Life begins to flow between shapes, boundless and exceedingly beautiful–not because we have achieved greatness but simply because we are whole again, and whole people are beautiful.
Learn by telling
The exploration and testing of our stories is what gives them merit. A favorite teacher of mine likes to say that as we learn how we have been characterized by our past, we also learn that it need not define us. Another teacher summarizes this way: “accept it more, believe it less.” We are defined by that which operates outside of our awareness because we are left without choice; only unconscious reaction is possible. I need to see the ways I have been characterized, shaped, habituated to think about myself and my life. I need to accept that this is so. Then, and only then, can I begin to stop believing this is who I really am–and choose something else.
Who have I been? Who do I intend to become? These are thrilling questions to ask. Choice, then, is the reason I am writing my story. And the reason I hope you will write yours too.
I imagine that I am not alone in feeling alone and scared as my lungs struggle. So, if you or anyone you know has this disease, please ask if they would like to join a support group to help them navigate this difficult, scary experience.
Together, we will:
Learn and digest important information about the path this disease takes and the options available at each step.
Work with the fear and stress of our experience by sharing resources that bring perspective on our lives and our shared struggle.
I’m calling it Covid Cohorts. Each group will be about six or seven people: small enough to foster intimacy and make sure every voice is heard, large enough to provide a felt sense of shared lift–a different kind than your family and friends can provide as concerned witnesses.
If you or someone you know would like to join such a group, please leave a comment on this post so we can get connected.
Last Saturday, my 39th birthday, I woke up with a weight on my chest. For me, from the get-go each breath was difficult, like pulling a rope that is bent over a sharp object. Though I didn’t have a fever, my breathing felt strange, like someone had switched the lungs I had been using the day before for an old, rickety pair during the night.
First came disbelief. I live in Boulder County, Colorado, where there were about 150 reported Covid-19 cases at the time. In a population of 322,514, how had I come to have the virus? Lack of tests and underreporting notwithstanding, my odds were about 0.05%.
The weight continued to bear down on my chest, a dry cough developed and pain in my lungs came and went. I had to accept that I almost certainly had the virus.
Next, anger. I had followed the rules! I had rarely left my house for the previous two weeks. A had taken a few hikes, grocery store and takeout runs. I had become a hand washing and no face-touching devotee. How the hell did I get this virus? I am a person who does the right thing. What kind of reward was this? Had I broken a rule I didn’t even know about? I had tried my best to act responsibly. I’m one of the upstanding people–doesn’t that count for anything?
Next, bargaining. So if I have it, what does that mean? My mind raced. It’s not like a diagnosis of stage 4 cancer; I would very likely survive. But a shocking realization came nonetheless: I might die this month. True, that is always a possibility, but there is an important difference when you have Covid-19: what had been a remote, unknowable probability now had a concrete timeframe (7 – 14 days) and specific number (1 – 2.5%, depending on how you slice risk factors). So I had a higher chance of dying from this disease than winning a raffle at a small concert. My mind continued to grope for better numbers. What sort of discount could I apply to that mortality rate if I factored in my age and lack of comorbidities?
On Day 3, I lay in my bed feeling pinned to the mattress by the weight on my chest. Was I short of breath? Each breath brought much discomfort and sometimes pain. This led me to take shorter breaths so as to minimize those sensations, which would trigger the feeling of shortness of breath. The mind takes its cues from the felt experience of the body, and in this situation as my brain felt its oxygen supply diminish, all it wanted to know was, “Am I ok?” My mind asked this question obsessively, recursively trying to factor in each new sensation to build a more accurate, coherent story of what was “really going on.” When I stood up to use the bathroom, my heart rate rose about 35% from my resting rate and I needed to breathe very deliberately to get it back down. What did that mean?
A good friend connected me with another person who had come down with Covid-19 about a week before I had. I asked him about his experience, which was very much like mine. This was a different kind of encouragement than my friends and family could provide who did not share my experience. He was walking the same path, a week ahead of me. I craved more of these interactions with fellow patients at different points on the journey through this disease. I wanted to tell them that I knew how scary and hard it was, and I wanted them to tell me the same.
I was also able to talk to a friend on the phone who is an ER doctor. She helped me with basic guidelines for when to go to the hospital and mostly emphasized that if I felt short of breath, if I could not get enough oxygen in, just go. For several hours I wavered.
In the midst of this parade of difficult sensations and the stories that my mind tried to construct around them, came a deep grief. I grieved for the fragility of my life. My body, which felt capable and strong enough a few days before, now felt completely contingent on these rickety-feeling lungs. I was a few failed breaths away from total incapacity, and I felt that my lungs could fail me at any time. (Right now, as I write these words on Day 11, I can still feel weight, heaviness, difficulty in my lungs. It is a sobering sensation.)
I grieved also for the fragility of my community and society. If I go to the hospital under normal circumstances, I am the sick one. Not so now. Our society itself has been slowed to a crawl by this disease. The systems around me in which I would normally have taken some comfort, healthy a month ago, are now wheezing their own labored breaths.
My loss of confidence in the capacity of my society to find a solution has made my experience of this disease strange. I felt this before I got sick: a heightened sense of vulnerability. I felt it now as a loneliness, a solid brick–a sense that world goes on regardless of my problems–was gone and there was nowhere firm to stand. There were no steps to take, no experts to consult. Normally, a difficult medical condition would give rise to lots of such looking under rocks for obscure answers. But for those of us with Covid-19, the full force of modern social technologies that enable cooperation, communication and specialization among billions of humans around the world has been applied and come up snake eyes. (At least for the time period that would determine my outcome.) I felt that I might as well be in the remote wilderness. There were no medicines for me, no treatments to seek. If my condition was truly dire, I might get a ventilator. Or I might not.
This feeling, combined with a fear of adding burden to an overloaded medical system, almost prevented me from going to the hospital on Day 3. I’m glad I wasn’t in the remote wilderness. A dear friend who had been kindly visiting me and staying as needed to cook and care for me–we had come down with symptoms at the same time, though hers were not the scary respiratory kind–took me to the emergency room after my sisters and mom urged me to play it safe. What exactly did “short of breath” mean? I wasn’t sure and neither were they, but I was somewhere close to the line.
I was apprehensive when I arrived at the emergency room. I felt guilt for exposing these healthcare workers to this disease. I hate being a burden. As I stood awkwardly 7 or 8 feet from the triage nurse, looking down at my shoes answering her questions between coughs into my mask, she asked me to step forward so that she could fasten a patient ID band around my wrist. As I leaned toward her, my face angled away, my body pulled back, my right arm stretched out toward her, she stood up to attach the band and whispered in a serious voice: “Don’t breathe.” I looked over at her, not sure if I had broken protocol and exposed her. Her eyes were smiling; she winked and chuckled. The next moment my tear ducts filled, flooded by the deep and beautiful spring of human kindness. This woman would come into contact with patient after patient, yet she was not overcome with fear. She reached out, embodying bravery and compassion, and in that moment I became again a fellow human being rather than the disease vector I had been a moment ago.
She led me to a room where a nurse gathered more data about my blood oxygen, blood pressure and history of symptoms. A doctor came into the room within about ten minutes dressed in a suit that looked half astronaut, half welder. Standing across the room from me, he talked through my symptoms, assessing my difficulty breathing and pain level. “You did the right thing coming in,” he assured me. “You don’t need oxygen at this point. We can give you an inhaler and cough medication. Your symptoms will come and go, often coming on strongly in the afternoons. Come back as soon as you have trouble breathing. You can go home.”
I got up from my hospital bed and walked out, less than 30 minutes since I had arrived, fastest trip to the ER in history. My inhaler and cough medication helped marginally. The real benefit of that trip was seeing and feeling that I did have support; I was not as alone as I had felt while reading about overwhelmed hospitals and harried medical staff. The generalized grief and desperation I had felt from reading news reports gave way to this specific lived experience of human kindness and care. From that moment on I felt a kind of solidarity with the experience that sick humans have had for millennia: most of us have not had the expectation of explanation and treatment for our sicknesses. Instead, our species has lived and died mostly relying on the attention and care of our community rather than on concrete models that lead to actions from which we expect results. Did I long for a proven treatment? Damn right I did. But I realized that even without such a treatment, this care in the midst of a profound lack of answers would be enough. Millions of other people had been sick or injured without answers, and I could also accept that experience.
Now I want to talk about fear. During most of what I’ve described, I felt fear. This is why my mind asked so insistently, “Am I ok? What is really going on?” I was afraid, and I wanted reasonable arguments to be less so. The physical sensations I experienced as my symptoms came on strongly were throbbing, pressure, tingling, palpitation. A rope pulling against a sharp object. But the story that emerged in my mind was: fragile, incapacitated, threatened, alone. I felt pressure and pinch. I thought fragile, helpless, afraid.
There is an old story about fear. A woman imagines a tiger in her minds eye. Fascinated with the image, she decides to paint the beast. As she concentrates, she becomes absorbed in his fearsome details: she labors to create his claws, his fangs, the sinews of his muscles tensed to attack. After a time, she has devoted herself so fully to envisioning this creature that she snaps back, her eyes wide with fear, heart beating fast. She has forgotten that it is a projection created by her own mental labor. This is not to say that a tiger does not exist, that one could never attack her–only that this one cannot. She finds calm again not because there is no possibility of a tiger coming for her but because the tiger she knows, the one she perceives right now is not a real tiger. She may yet be eaten someday, but not by this tiger; she may as well get on with her life such as it actually is, not as she imagines it to be.
In this story, I found for myself a way to engage my fear. Lying in bed with pain, pressure and uncertainty in my fragile-feeling lungs, my mind sought the certainty of no tigers. The closest I could come to establishing this kind of assurance was to remind myself that the odds were on my side. But even so, the fear was still very strong. 1 in 100. 1 in 50. Stories abound of young people whose symptoms plunge to a dire place late into this illness.
What could I do then? The first way I could walk toward the door of my fear was to watch myself painting the tiger. When I was aware of painting, I could see the elaborate brushwork and then lay down the brush. Sometimes I yelled at myself to stop painting this stupid picture. This made the picture even more vivid. “This must be important if it is off limits,” countered my fear. Rather, I found that the painting stopped when I directed my attention to investigate the actual sensations my body was experiencing. I could not force myself to stop creating stories, but I could direct my attention to something more tangible: felt sensations. Phillip Moffitt writes that “energy follows attention.” So I practiced directing my attention toward the pangs and twinges and tingles of my lived experience rather than my interpretation of those sensations, a grand tale of woe.
This helped because it put the fear into perspective. I was no longer captive audience to a big tragic movie all the time. I could look around. But I was still afraid. Sorting and examining the contents of my mind gave me clarity about what was real and imagined, but I could not fool myself into ignoring the significant possibility of death. My logical analysis of my odds was based on sound data.
Walking fully through the door of my fear required that I bring what remained of my fear after I stopped painting an elaborate picture very close. I realized that as long as I viewed this fear as intolerable, I would be at war with it. What was intolerable to me about this fear? In an effort to make peace, I asked my fear: “If you had a voice, what would you say?
This part of me, the fearful part, said, “Will there be a ventilator for me?”
“I don’t know,” I had to reply. But then I could follow with, “Why do I want the assurance of a ventilator?”
“Because with a ventilator, my chances will increase,” came the reply.
“Ok,” I said. “And what if I get a ventilator and that does not help? What if I am lying in the hospital a few days from now on this ventilator, and I still feel my body failing, slipping away?”
“Well,” I had to answer, “Then I will die.”
“And what would be intolerable about that, about dying now, a few days after my 39th birthday?”
“It is intolerable because I would miss the second half of my life,” my fear replied. “I have only recently learned who I am: finally I see I am not what I have accomplished, I am not the problems I have solved, I am not the responsibilities I have faithfully fulfilled. What a tragedy, what a cruel joke to wake up from decades of autopilot, hands finally on the wheel, headed somewhere worth going and then at that moment of possibility for the ride to be over. That is intolerable.”
“But what did you learn about who you are?” I replied?
Now, at last, I had come to the end of the line. “I am my capacity to appreciate this breath that I have now… and this one too. This gift is given to me now: to know and feel what it is like to take a breath, for it to enter into my lungs, even as they struggle. Then to feel it nourish me as millions of new red blood cells bloom amidst this viral storm. I am also my capacity to feel gratitude: for the kindness of each person who checks on me; for the dinner my dear friend fixed for me; for the soup my sister sent to me; for the smile and wink of the triage nurse. I am the expression of what I value for its own sake: I can send a text to my family telling them I love them. I can picture the carbon of my body’s ashes, poured out on a mountain I love, sinking into the earth and rising again as mushrooms, as grass, as a sapling.”
Here I felt unshakable confidence because I knew that I was beyond the reach of probabilities rife with inherently unknowable contingent dependencies. As long as I tried beat the fear, to bludgeon it into submission with arguments and mental fortitude, it held me fast.
But my fear was not a separate thing now. I could not be at war with it any longer because it said back to me what my heart knew: even in this devastatingly fragile body, I am free. Free not only to see the painted tiger and calm myself, but then also to approach the real tiger, to climb into its mouth and to give myself to the uncertain, beautiful life that awaits me.
If you are struggling in the throes of Covid-19 now, I am sorry that I cannot ease your physical pain. I know it is very hard, and it is very scary. First, please have compassion for your body and your mind. You are suffering so much. Update: join a Covid Cohort.
And then, please ask yourself: “If I were free right now (which you happen to be), what beauty would I make of the hours, days or years of my life that remain?”