This is the first, introductory blog post of a planned series. I now have the energy to write this!!! Physical and mental energy!!! What a miracle!!! I think only long haulers, and people with other similar chronic conditions can understand what this means. What I would like to accomplish with this series is to explain to all the ramifications of living with long covid, and to illustrate how the Alexander Technique can assist with managing this chronic condition.
“One of the biggest surprises of Long COVID is that many people went from the height of productive careers and active lifestyles to being disabled almost overnight. Dreams have been dashed by this disease, and lives have been altered. In their introduction, Fiona Lowenstein sums up the reality of this disease: ‘I am not the person I was before I developed Long COVID, and I doubt I will ever feel I’ve returned to the former self, even if all my remaining health issues someday evaporate.’ Countless other Long COVID survivors feel this way.” Akiko Iwasaki, PhD, as quoted in The Long Covid Survival Guide edited by Fiona Lowenstein.
For the sake of expediency I am using this spelling: long covid.
Personally, now that I have made some progress in recovery, I can write about my long covid journey. My turning point date, my magical date, was January 18, 2023. 🎉🍾🎶 I got home that day from my part-time job and I realized that I didn’t have to go immediately to bed. I actually had the energy to do more. I got out a flute and started practicing. I figured if I could keep this up daily something would have shifted for me. It did. It shifted. A light switch turned on. It had been two years since I could play flute everyday. I couldn’t even listen to music! I feel like a sort of phoenix, but instead of rising from ashes to a new life, I am rising from severe and debilitating long covid. I’m in the process of recovering my old pre-covid life. But I doubt I will fully recover. I’m getting used to my new reality.
Covid. In December of 2019 I got sick with an illness which baffled me. I was sick for at least 3 weeks. I remember having a high fever for a bunch of days, I was beyond exhausted, and I had a dry cough that would not go away for a very long time. I was freezing all the time, more freezing than usual.
I had no clue that this could have been the Corona virus because “it was not yet in NYC.” I have since found out differently.
Then in February “the first case” was announced in NYC. Then lockdown happened in March of 2020.
In April I was still feeling rotten. I have other serious, inherited autoimmune conditions, but the pain, crazy debilitating fatigue, migraines, weakness, insomnia and circadian rhythm disorder, brain fog, etc. I was experiencing were on a different level. My long-time doc tested me for everything including covid antibodies and, sure enough, my antibody number was high. I was diagnosed then with post-acute sequelae of Covid-19 aka long covid. The antibody test was repeated; same results. Needless to say I was stunned. My doc had me contact the NYU Langone Post Covid Care Center. The parade of doc visits, tests and medications started.
Long covid waxes and wanes and transforms. It’s a chronic condition. Anyone can get long covid, no matter what physical condition, what age. You can get long covid! And let me tell you, managing long covid is a full-time job.
And so my long covid journey began. I was officially a first-wave covid long hauler as of April, 2020. There is no cure yet. All one can hope for is to find an empathetic medical team who believes you instead of gaslighting you. Docs who have particular specialties and who are able to say: “I don’t know.” “Let’s try.” “Let’s find out together.” And you need those docs to have the savvy and courage to arrange the medication mega-cocktail that might bring relief to some symptoms.
I am grateful that I got a diagnosis early on. I am certainly grateful that I didn’t have to be hospitalized, intubated, etc. I am grateful that I did not die like some I know. I count my blessings all the time. I have always been an optimist. I’m used to overcoming health issues. I’m used to ploughing through. However, long covid is something else as it exacerbated many of my previous conditions, known and unknown.
Well we all know what lockdown was like. Fear. Isolation. Life for me was restricted to my immediate neighborhood. Solitude. Walking Eloise, my first dog ever, in Riverside Park; walking to the farmers’ market up by Columbia University, going to the hardware store up there because they had everything. I started photographing my neighborhood during lockdown. I could do that stuff for awhile, and then I could not. Then I could barely move. It was Plan B time. Eloise started having shorter and shorter walks. I came to love food delivery services. Cletis Milou the cat, Eloise and I would just hang out…all of us reclining or lying down in bed.
I had to pause teaching the Alexander Technique. Even remotely. I could not work at all at anything.I had to drastically scale down all activities and socializing. My life as I knew it came to a hard stop.
Then, in April, 2021, I was recovered enough to start back at my job (in tech) super part-time. Work, go home and go to bed. Repeat. Repeat. Repeat. That was my life. Until January 18th. Now I find “my day job” to be more manageable. Now I’m starting up teaching Alexander Technique again. I’m playing music. I’m writing. I’m the only Alexander Technique teacher I know of who is a first-waver long hauler. I guess that makes me a de facto expert on this subject. I certainly hope to guide fellow long haulers with my personal expertise of the Alexander Technique and my perspective on being a long hauler. “Been there done that” gives me a certain understanding.
I am extremely lucky as I have amazing support. This is so important for a “solo rider.” I am a privileged person. I work for a company that really cares and supports…the organization plus the particular people I work with on an everyday basis. My company provides me with excellent health insurance! Don’t get me started on what it might be to go through this without health insurance! Plus I have wonderful friends and family, who, even if far away, help me tremendously on an emotional level. I have angel-friends near-by who help me do things I cannot manage now. I have found my small band of caring medical practitioners.
One huge thing that has helped me throughout this journey is the Alexander Technique. I am so grateful for my training and my teaching knowledge. The Alex Tech provides one with a knowledge of how your body and mind work.
These are the aspects of Alex Tech that I practice all the time and that helped me get through rough times:
1. Constructive rest. Deep rest and pacing oneself are of paramount importance in recovering from long covid, chronic fatigue and other similar conditions
2. Awareness of breath and the physiology of breathing, and breathing exercises such as whispered ah
3. Being aware of one’s use at all times. And of stopping and pausing oneself when being aware of doing something in poor use so one can reset and start again with better use. The Alex Tech jargon for this is “inhibit and direct.”
The important thing for me here is to convey to you the surreal quality of going through long covid. The loneliness. The disbelief of others. “Well you look fine.” And how the Alexander Technique can help manage this chronic illness crisis.I feel as though my real self had been hijacked for the longest time. I am just emerging out of this morass. Kind of like coming out of a twilight zone. Makes me think I have been possessed by a modern day dybbuk. Is the dybbuk finally saying au revoir?
A recent sunrise, seen while walking Eloise. A moment that brought me much joy.
“Always try to keep a patch of sky above your life.”
“Tâchez de garder toujours un morceau de ciel au-dessus de votre vie.”