Offered anonymously by a COVID-19 patient in California
The Essence of Ritual, by Rumi
Pray the prayer that is the essence of any ritual. God, I have no hope, I am torn to shreds. You are my first, my last and only refuge. Don't do daily prayers like a bird pecking its head up and down. Prayer is an egg. Hatch out the total helplessness inside.
One of the most startling aspects of the COVID-19 pandemic is the ability it has had to polarize people. We are vilified for not wearing a mask; we are vilified for wearing a mask. We believe it is a manmade, malicious-intent virus or we believe it is a natural, particularly virulent pathogen. Regardless of where you stand, it is important to hold compassion for those who are hit hard by the virus. It not only affects those with prior conditions, but also those who follow a very clean, organic, healthy lifestyle and have no comorbidities. I invite you to enter into the experience of one such patient. Her story is a narrative between herself and one of her physicians, me.
When patients are hit hard by the virus, there often are three phases. The first phase is a set of symptoms that we now know are quite variable and typically include a few days of fever. The second phase is very serious with fever and severe symptoms of burning lungs, exhaustion and weakness. The third phase is extremely variable in its symptoms, with a duration which is still unknown. This patient’s story begins at the third phase.
I believe there is a tremendous amount of shaming and blaming going on collectively right now towards people who (in the past) had no voice/no seen presence, because they were of a certain economic stature, or race or age or health. I used to think I was above all that, but I feel it everywhere now, including in myself.
I don’t know why am feeling scared, but I am. I feel like I’m starting all over again. I know you referred to this as the third wave. I’m hoping it won’t be like the storm of the second wave. It’s interesting, this harsh reality of needing to surrender into the unknown and learn how to wait and sit with the fear of the unknown. It is foremost in my mind because there is no plan and nothing I can do but ride out the illness.
I feel like I’m sinking under the surface of the ocean. I know it’s not true, but I feel like I’ll never rise to the surface again. It must be how people feel when they are dealing with hypothermia—like it’s okay to fall asleep and never wake up again. It’s a horrible feeling. I normally consider myself such a fighter and one who perseveres. These feelings are new to me.
I’ve been on an epic journey where my body had to fight for its life and it’s not over yet. I am still dealing with several symptoms and recovery is very slow. People have asked, “Where did you get it?” There is no answer to this. The virus is airborne and it’s now everywhere. It’s not like you or I just stepped into it.
People also hold the misperception that this just affects your lungs. Not so. Over a month ago I began to experience symptoms which came on gradually. If you’re interested, here goes:
SLEEP DISRUPTION. One night four hours, the next nine hours, then back to three hours. FATIGUE that eventually becomes debilitating. DIZZINESS like your head is one big fishbowl with water sloshing from side to side tsunami fashion. LUNGS similar to an episode of life-threatening pneumonia I suffered from in the past but with more burning and desperate air-hunger. I imagine dying of emphysema would be similar.
PERICARDIUM feels so squeezed by enlarged lungs pushing on it, it feels as if you are having a heart attack. HANDS AND FEET. Your fingers and toes become stiff and will feel like they are in ice water. They may have small blood clots. NEUROPATHY in numerous locations of the body. Every nerve feels like it’s on fire, especially in the extremities. HEADACHES with pressure beyond ten migraines experienced at the same time. It comes from encephalitis. The brain is literally enlarged/swollen. MEMORY. You will not be able to remember the most basic of thoughts. This finally forced me to reach out to others saying, “This is really hard.” PAIN so severe you’ll feel like you’re losing your mind while simultaneously suffering under the other symptoms. MUSCLE TONE is out the window. You stand up and your legs give out from under you like Bambi on the ice. At this point you’re wondering what parts of your body, if any, you can rely on. FEVER/CHILLS are intermittent and unpredictable. DEHYDRATION becomes a serious issue. You’re burning through sodium and other minerals very quickly. Every hour, I would pour salt into my hand and lick it, then sip an entire glass of water. Gatorade, rehydration and electrolyte formulas could not keep up with the dehydration. I did not realize this until I became semi-comatose and my neighbor found me. INTESTINAL changes—you can use your imagination. ADRENAL FATIGUE because your adrenals will be completely spent of energy just to keep you alive. BLOOD CLOTS are always a hidden potential, especially during prolonged periods of lying down.
I am still experiencing some of these symptoms and recovery will be protracted. We live in a culture that likes stories with well-defined beginnings, middles and endings, but this illness does not provide that. The beginning doesn’t start with, “I was being very careful and isolated, and I still got COVID.” The middle doesn’t continue with, “I did all the right things.” The ending doesn’t come with, “and now I’m all better.” The daily question of, “Are you doing better?” can become exhausting because you want to but cannot respond with, “Yes.”
The whole process of recovery is ambiguous and unpredictable and requires a complete surrender to allow things to unfold as they will without imposing our expectations on our bodies beyond the desire of wanting to get well again. It’s scary and yet I stay on the path of recovery knowing I’m not alone (in spite of living alone) as I am supported by others in prayer, good wishes and love. I have two amazing doctors working with me providing medical advice and guidance. Except during the storm of experiencing the worst symptoms, I was able to remain in prayer and meditation while mindfully and slowly breathing.
Whew! It’s a journey. An epic journey. And my journey is not over yet. I trust that one day it will be. I didn’t want to “bother anyone” with what was and is still happening to me, but there is a part of me that forced me to speak up—my will to survive. Suffering from COVID is real and we cannot continue to do it behind closed doors. It doesn’t matter if we are suffering in our hearts, minds or bodies. We need one another and COVID has given each of us the opportunity to extend compassion and outreach to assist others, no matter who they are or what their need. We are wired to care and be of service. Life is rather empty otherwise. Please take this pandemic seriously. I am one of the lucky ones not to have died. Through this pandemic we are learning that in the long run, only love matters.
© Trinity Integrative Family Medicine, Inc., glkocourek, 2020-Sep; latest revision 09-May-2021