COVID, in both its acute and intractable states, is a whole-person illness. It infects nearly every body system, if not all of them: respiratory, neurological, cardiovascular, circulatory, gastrointestinal, endocrine.
Long COVID, the seemingly permanent version of it, goes much deeper than any body system though. It leaves nothing untainted. My ability to think is severely impaired and sometimes blocked due to either brain fog or physical pain. Emotions can go from cool to fiery in an instant if I’m not mindful and douse them before they ignite. My spirit was crushed a dozen times a day for more than eighteen months by this horrible disease. No part of my essence remains unchanged, and I can now see clearly how they’re all connected.
This disease takes everything you hold dear and limits whatever is left. What was once routine is now a daunting task. One of the hardest tasks I’ve confronted with long COVID is sleeping. Who’d guess sleeping becomes a chore after illness? In the beginning, four hours was my sleep limit. Anything beyond that left my whole body stiff and painful, the kind of pain that makes you want to stop living. After three years, I’ve worked up to six hours’ sleep, but I still require a morning “un-bedding” of my spine before I can even make coffee. Yeah, I’ve created some new words too, because our language can’t always impart what I need to convey. The un-bedding takes from thirty minutes to five hours, depending on what else might be contributing to my stiffness. Every activity must be time-limited to avoid crashing or pain spikes: sitting, standing, walking, and especially activity that requires the use of my arms.
The deepest wound was the loss of my writing voice. I wrote nothing for two years. I couldn’t write. I tried. I cried. I tried again and cried harder. I’d sit down to my computer with great ideas for starters. Before I could get a blank document open, there’d be a swarm of angry hornets buzzing around in my creative channels. If I made it all the way to typing, I rarely got beyond the first sentence before I was in tears over my paralyzed mind.
That’s enough talk about the suffering though. I’ll revisit that topic later, when I find the courage and stamina for it. There are hundreds if not thousands of personal stories about the horrors of long COVID. I haven’t seen any that talk about what people are learning from it. I don’t deny the horrors. They’re real. They’re often agonizing and unrelenting. The pain and suffering are worse than anything I’ve ever encountered. It impacts every aspect of life. I spent a lot of time wanting desperately to escape this new body. Whenever I found myself dangling at the end of my rope, wanting to let go, the despair always led either to finding some effective mitigation strategy or some newfound wisdom I probably never would have found if I wasn’t so ill. Is there such a thing as bodily wisdom? I think there is, but we lose touch with it in early childhood. COVID granted me access to that and more.
COVID changes you. I believe this pandemic has changed all of us, even those who didn’t get it and didn’t lose someone they love to it. Coming suddenly face-to-face with our own mortality has a profound effect on you. The pandemic itself, even before I knew I had long COVID, caused me to do some serious and objective soul searching. That’s not what I set out to do. I was searching for relief from complex post-traumatic stress disorder (cPTSD) and some weirdly persistent pain that kept traveling from one part of my body to another. The agony of it sent me into survival mode, I believe. Going inside was a mandate from my body, necessary to continue life, which came perilously close to ending mid-2020. I had to learn my body and learn to decipher its cries for help. The only way to learn that was to step out of the control freak role and let it self-correct, to shut up and listen, in other words.
The first major change came after I realized anger was exacerbating my pain. Anger punishes harshly, and I was easily angered by anti-maskers and other insanity I confronted both on- and offline. Once I made the correlation between anger and pain, I made a pact with myself to figure out how to stop getting angry. I made a similar pact in 2019 to find ways to improve my own mental health, after defying many therapists’ attempts to help me. Ironically, the lessons of long COVID showed me the path out of cPTSD. The self-mandated anger cessation was merely the beginning.
My next important lesson was the absolute necessity of practicing self-care and finding self-love. These things don’t come easily to someone who grew up in abuse and poverty. I grew up in a culture that frowns on such ideas and often ostracizes people who seek self-improvement. I had no choice with long COVID, master of my life for the last three years. If COVID says sit, I sit. If COVID says sleep, I sleep. You get the point: necessary and non-negotiable.
One of the most profound revelations that came from long COVID was a detailed roadmap of where and how my body had stored the traumas of my lifetime, both physical and emotional. I couldn’t possibly have recognized what was happening to me if I hadn’t read The Body Keeps the Score by Bessel van der Kolk and In an Unspoken Voice by Peter Levine.
After I was sick in December 2019, an old injury, a broken heel, flared up. It became inflamed, I assumed from my physically demanding job. It got so bad that an orthopedist recommended surgery. Something, intuition or gut instinct, told me not to have surgery. I opted for a wait-and-see approach. I’d kept my rigid boot, so I wore it per doctor’s orders for a month. I quit my job. It was a holiday job, but I had intended to stay on permanent if offered. The inflammation in my foot subsided, and life returned to normal.
A few months later, my neck and shoulders started bothering me. I felt much like I had immediately after that 2003 accident, which resulted in two herniated disks and spinal compression in my neck. I started doing the exercises I’d learned through physical therapy. This is when I realized my gait was imbalanced. I walked with an invisible limp: right hip cocked up, walking on the outside of that foot, with my left leg bearing the bulk of my weight. I added gait retraining to my daily routine. That was about six months into my journey.
I started having sharp, straight-line pain in my abdomen, along the scar from my midline hysterectomy incision. At that point, I was starting to question my sanity. How can an eight-year-old scar suddenly have searing pain again? I wondered aloud while pacing the floor one day. This was after my second infection, which is when I learned it was long COVID that had been causing all that hell the previous year. My son suggested that my immune system was attacking scar tissues. I think he’s right, because every serious injury of my lifetime has re-presented with pains that mimic the acute state.
I also found emotional traumas stored all over my body, the most persistent in my jaw. I’ve had TMJ since I was a teenager. An MRI a decade or so ago revealed a permanently dislocated right jaw. I’ve seen several doctors over the years, tried different therapies, and always tire of the fuss of appliances like mouth guards. I’ve had nocturnal bruxism my whole life, as far as I know. I can’t control what I do in my sleep, I reasoned, and gave up trying to make my TMJ better. Learn to live with it, I convinced myself was the only option I had. I started noticing my jaw relaxing as I worked on the other pains I experienced through the various methods I’ve tried: yoga, meditation, breathing, pressure-point massage, among a few. Eventually the click went away completely. My jaw is no longer dislocated. The COVID work made it disappear, after living with it for more than forty years.
The fact that lifetime ailments are falling away gives me hope. Many are calling this debilitating illness “airborne AIDS.” I can’t accept that. I won’t. I might die of it next week, or I might live another twenty years. I can’t know, but I won’t doom myself by believing I’m doomed. Attitude matters, and I credit my illness with irreversibly changing mine. For the better.
When pain demands all your energy, all your attention, and every ounce of strength you can muster just to exist, nothing else matters. I want peace in my body. I want nothing else when my body screams in pain. There is an absence of desire, except for the desire for pain-free moments. Where there is no desire and no suffering, however brief the moment may be, I want only to savor and appreciate. That’s all. There is only the moment of no-pain. All other pain — emotional, mental, psychological, spiritual — lie dormant in those moments. And I can dance with bliss for a moment.
I won’t lie, it isn’t always easy to achieve this state of focus and clarity. Meditation is one of my best friends nowadays. I rely heavily on it at least twice a day, usually more often. I’ve learned several variations: sitting, walking, standing, lying down, even dancing. Meditation also played an important role in learning to find “gifts” in the torment. It has been a lifesaver for me.
We are stronger than we can ever imagine. We all are. This disease has threatened to end me countless times. For at least a year, probably longer, I had no desire to continue in this body. I spent a few months stuck in the notion of living several years with a disease that will ultimately kill me anyway. We can’t know that won’t be our outcome, but wallowing in self-pity nearly killed me. This was yet another of the discoveries COVID alerted me to: Pity is incredibly destructive. It doesn’t allow me to pull myself out of the deep, dark pitfalls that blend into the perpetual bleak substrate of a long-COVID life.
It taught me to find joy and gratitude, magical emotions that lift me from any funk if I remember to practice them. Everything gets lost in the mire of long COVID if I lose focus. Being ever mindful has taken yet another important role in life for me. How’s your posture? Drop that shoulder! Relax those abs. Breathe with the diaphragm, not all those other muscles. Relax the back. Relax the neck. I constantly remind myself to keep an eye on my body. I always lose focus when I start doing something with my arms: chopping vegetables, washing dishes, typing. Pain brings me back, and I repeat the whole process again. It’s an always-on job.
Perhaps one of the most important lessons I learned from COVID was to actively seek positive experiences and to appreciate all of them with my whole being, even those that might have previously seemed insignificant. No joy is too small. Every smile, every glimmer of hope, every warm glow of gratitude fills me up. I leak like a sieve, so I’m always searching for renewals.
I still get glimpses of hell every single day. I let them have their moments, honor my pain along with my joy. Then I go in search of ways to feel better.
Have you found valuable lessons in long COVID? Have you shared them with other people?
May you find peace in your body. Namaste!
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