Why am I writing this? I’m doing it so that any person reading this who is beating themselves up for not being “stronger” or feeling like they’re just being “lazy” or like this decline is some “normal” part of aging – will know that it isn’t any of that. Long COVID is real, and it can afflict anyone. It is more predatory on those of us with auto-immune issues, but from the studies I’ve read coming out of the USA and Europe from highly regarded research institutions, it can even prey upon healthy folks at any age.
On August of 2015, I was invited to be an Artist in Residence at the Springfield Conservatory of the Arts. I was delighted. Then, my life flow was interrupted by a traumatic brain injury. It happened in a federal building. I am not litigious – not even when in the 1980s I was intentionally caught and dragged for two blocks in the door of a NYC bus. I was unscathed and my work with young folks demanded all of my energy. No time for a lawsuit – besides, apart from the shock of it, I was fine. I swore up a storm in that moment and got the rage out me. Yes, I should have gone to court to take down the bus driver, but I was more interested in using my time to raise up my students. If someone had done that for that bus driver when he was a child, perhaps he wouldn’t have grown up to be so disenchanted with life, so absent of love.
So, fast forward to 2015. It was a life-changing injury, and a lawsuit was needed. Who knew when I could work again? As I said, it was a federal building and the feds have all the money and power they need so that someone like me can’t win. I filed anyway. My attorney fought hard for me, for years, with his fee contingent on the outcome. A retired police officer witnessed the entire thing and was the one who insisted an ambulance be called because of the intensity of the blow to my head. He offered to be a witness in court and then refused, with no explanation. Suddenly he was in hiding when the subpoena arrived. Perhaps he had something to hide and didn’t want it coming out in court.
The settlement we received is not even worth mentioning. I celebrated the win anyway – but it was no windfall. It was enough to know how much my attorney cared about me as a person and that he fought a good fight. A true mensch. The government decided that I didn’t earn enough to begin with and could not claim much loss of income – apparently, under the law, how much I earned mattered more than what the injury has done to my life and work.
Now I live with permanently impaired executive skills, among other things – like ice pick headaches – that make daily tasks a little harder. It took me five years to be able to write a one-paragraph bio in less than four hours. Writing my POV columns took weeks. I didn’t walk alone much, as it could look like I was drunk. It took so much concentration and effort to walk without the listing, that walking alone was a rare option. Being around people and the effort it took just to have a coherent conversation without memory lapses of the most obvious and current things, was exhausting. This social butterfly folded her wings for long periods of time. Even phone calls took the wind out of me.
Just as I was feeling like I’d overcome much of all this, COVID arrived. I am now living with Long COVID since early April of this year. I had no idea how serious it is until it happened to me. Once again, my life flow has been interrupted.
I notice that when I tell folks I have Long COVID, an incredulous look passes over some of them, just before covering disbelief with politeness: “I’m sorry to hear that.” Although 65 million people worldwide are dealing with Long COVID, it can still feel unreal. I still question myself – are these profoundly debilitating symptoms like Post Exertional Malaise (PEM), the chronic and deep fatigue, the sudden and intrusive need to nap that can follow even the most restful nine hour, deep sleep, the return of ice pick headaches – am I imagining all of this? Is it just depression? My doctor and my self-knowing, along with the many folks I know who are also feeling this way, some who are decades younger than me, assure me it isn’t an overactive imagination nor hypochondria.
In a Nature Reviews Microbiology article from, January 13, 2023, I learned: “Long COVID is an often debilitating illness that occurs in at least 10% of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infections. More than 200 symptoms have been identified with impacts on multiple organ systems. At least 65 million individuals worldwide are estimated to have long COVID, with cases increasing daily.*
Long COVID is the most egregious opportunist I’ve ever met (and I know many) – it seems to read my cells, read the weak spots and attack like a kidney punch in a dirty fight. When I had three good days in a row, feeling like my energetic self again, my doctor and I were both excited that maybe I was turning a corner – but instead I hit a wall. I’ve been on a rollercoaster of “good” and “bad” days since early April, health-wise. My mind and my practice make sure that I find a way to make every day a GREAT day, no matter how I feel. It could be something as simple as finding the work of a poet I’ve never read, sitting on my porch when a neighbor waves and asks how I’m doing, or calling a friend to see how their life is going.
I’ve had to create new boundaries in my life for what I can and cannot do – sometimes, the phone calls must be brief – more than ten minutes and I might need a three hour nap. Yes, it goes that deep. I love being with friends and attending arts events – but I can’t yet. One-on-one to share a meal, or video conference. When I must work, because bills need to get paid, I harness energy for days, with long periods of rest and quiet. The day arrives, my work ethic adrenalin and crystallized skills kick in, and for a few hours, I can give it all – as I love to do. This is usually followed by a week or two of fatigue that demands all the boundaries to go up. No calls, no visits, no going anywhere beyond my yard.
As a person with a home, a well-stocked pantry, and a loving, hard-working spouse who brings home the bacon, I have the privilege to take time to get well. As I mentioned, there are still bills to be paid, some that require two incomes – and I like having the economic sovereignty of independence – and I do need to work – because I love what I do. Not everyone can take time off. What happens to folks with Long COVID who don’t have the space, time or freedom to rest? Those with dependents? We all need to be aware and sensitive to the needs of others. There are people in our lives who might not recognize that they have Long COVID, and are struggling in unthinkable ways. For a long while, I was blaming myself and certain I was imagining it. Brain fog was creating confusion in my thoughts, speech and life. It has just about lifted – taking Lion’s Mane tincture; meditation; music; and exercise – even when I don’t feel like it. I do my best to not overdo it on the good days; not easy for me – an act of will,
I resist this illness with joy; gratitude for what I can do each day instead of bemoaning what I can’t. Did getting to this phase come easy for me? No. For a while I was just flat. Feeling like I’d died and no one told me. I gave into it with what could have been a form of depression. It was so overwhelming that I felt completely powerless. Then I got my inner “Bronx Girl” up – “I’ve been through worse than this! So, what can I do?”
First, I re-set my internal clock to beat the insomnia and the mess that comes with it. I used an eye mask. Sprayed lavender oil on my bedding, listened to music that is designed for restfulness. I had to make myself go to bed, as I had gone from Banker’s to Vampire’s hours. After weeks of trying, I made it back to a steady bed at 9:00 pm, rise at 5:00 am. It worked for a while. I got cocky about it – and now I have to re-set that inner clock again – I need to re-negotiate with my body and find out what the best setting might be. There’s plenty of space between the Banker and the Vampire. (No matter how much in common they night have in some cases.)
Next, I reclaimed my exercise routine. I had to go from boxing to yoga and dancing. Also, some resistance training. Taking back my stamina in small increments of time. I’ve always felt that “no pain, no gain” is a form of S&M, fine for some, but not for me. If all I can do is 5 minutes, then that’s what I do. Some days, I can do 30 minutes total throughout the day. I can feel the difference even when the mirror tries to insult me. I increased my intake of greens (I’ve been eating healthy for a very long time) and thanks to very knowledgeable friends who are practitioners of the original traditional medicines, I am finding I now have 3-4 hours of my healthy self a day. I’ve been helped by mushrooms, flower essences, and am adding homeopathy, along with supplements that support what the body can no longer produce.
What helps the most? Caring about others. Calling friends to check in to see how they’re doing. Posting positive things on social media. Watching diverse flamenco dancers, celebrating the accomplishments of others – not as vicarious experiences at all – but as love and gratitude. I have also listened to folks who have healing knowledge and have known me for decades – every person responds to different approaches. A dear friend who is versed in natural remedies and homeopathy suggested that I take Byronia Alba, a homeopathic medicine. She and her partner arrived at the dosage that was right for me. Our enduring friendship and my trust in them gives me the faith that this remedy will improve my health.
I continue to work on my creative projects daily – at a pace my body allows. I’ve been honest with funders – to let them know I might need some medical leniency with timelines, and all of them have been kind and helpful – they know I’ll come through. The work I’m doing means a great deal to me and I have no intention of giving up. Being able to see my friends in person means just as much or more, and I am looking forward to those connections. We stay in touch, we do connect, but I miss the hugs.
The people we love will always be the best medicine.
*Davis, H.E., McCorkell, L., Vogel, J.M. et al. Long COVID: major findings, mechanisms and recommendations. Nat Rev Microbial 21, 133–146 (2023). https://doi.org/10.1038/s41579-022-00846-2 ■