I have been afflicted with a severe case of “long-haul” COVID for the last 10 months. This is my story.
My symptoms began on the 5th of January, 2021, at 3:30pm, and in an instance, my life changed forever. I could not keep my eyes open, could not read the grant I had helped write only a few months earlier, and was unsteady on my feet. From then, I struggled with weeks of cognitive dysfunction- which meant I had difficulty finding words when speaking, struggled to read and write, had trouble forming memories, and could no longer sustain any type of strenuous exercise.
My colleagues and friends initially told me perhaps it was due to stress or being overworked. Or perhaps due to the profound sadness that my grandmother was nearing the end of her life. It was hard not to wonder “Did I just create all of this in my head?”
Several weeks later, crippling insomnia began. It was at this point, having not slept for days, that I sought medical care. My partner Lawrence, an emerging pathogens researcher who had been studying Long Covid since March 2020, was the first to correctly diagnose my symptoms. Because of him and my connections as a physician, I was able to amass an incredible care team - and to this day I am acutely aware that what should be a basic human right for all who are suffering was only afforded to me through my privilege.
However, I still had encounters where I was met with stigma. As the NIH pledged a 1 billion dollar amount to better understand this emerging phenomenon, I had one physician say “I do not believe in Long-COVID – I think my patients just have PTSD from being sick during a pandemic.” I looked at him in disbelief. Having gone through the struggles of traumatic stress from front-line work, I explained to him how vastly different these symptoms were. “I have been evacuated out of gunfire in a disaster zone in Haiti, I have helplessly watched people die at the peak of COVID-- never have I not been able to write a grant, complete my work, or lose a single night of sleep. In fact, it is my tolerance to these events that made me choose my career in disaster work, international public health, and working in the emergency department.” I knew then that something was happening to me, and it was not stress.
Ten months later, I have a formal diagnosis, have been on and off eight different medications (including a vast array of nontraditional treatments), changed my lifestyle and diet, was forced to leave my job in the emergency department, and I am still recovering. During this period I have also suffered a relapse, which meant 6 weeks at home confined to my bed, with such profound exhaustion that carrying a 30-minute conversation was impossible.
This relapsing-remitting course, both on a scale of weeks-to-months, but also from day-to-day, has been challenging to navigate and explain to my community. The majority of people who see me do so when I’m well enough to leave my home, and are unable to see the tremendous effort I have to put forth – every conversation, every meal together, every hour of attention to my loved ones – comes at a cost, and the omnipresent fear of causing a flare or a relapse and a resurgence of severe fatigue, insomnia, and ‘brain-fog’. And even more challenging is that on the surface, I “appear” normal.
Because of this, long-haul COVID like many other illnesses, is a road you inevitably walk alone.
Here, in the depths of isolation, I encountered a battle with control- If you pace yourself, eat the perfect diet, stick to an exercise regimen where you do just enough but never too much, stop working, eliminate all stress, long-COVID sometimes obliges with relief for a few hours or a few days. I recognized the beginnings of a toxic relationship– one that demands perfection in a way that life does not possibly allow.
With this recognition, I realized I had a choice- continue to fight for control or surrender into compassion and forgiveness for those moments where life and being the perfect patient disagreed. And then – slowly, I began to grow.
Now, when I think of everything I have lost – my work, snowboarding with my family, running over the Williamsburg bridge, hiking for days, dancing my heart out, hot yoga, my amazing community, travel --- I can’t help but see everything I have gained.
I have learned how to be still. I have discovered what it means to grieve with my full being. I have seen who I am without all that I do – and I have learned that I love that person. I have gotten a small glimpse at what people know when they are nearing the end of their life – how much tenderness, honestly, love, wisdom, gratitude, and humility exists– only when we are confronted with the fact that we all will die one day.
These lessons are invaluable, and undoubtedly ones I will relearn and revisit for the remainder of my life. And for that reason, I would not change these past 10 months, and why this seemingly tragic story has a happy ending. The icing on this COVID-cake is that I am slowly starting to learn what I need to improve, and I am slowly starting to improve.
I would like to extend an offer to speak with anyone who is suffering from long-haul COVID or to their loved ones who may need support. Also, if you are a clinician and would like to learn more about this illness in your clinical practice, I would be more than happy to schedule time to chat.
When we can be together with love and understanding, we are collectively better.