Finding Wisdom in What is Lost: How Covid Forever Changed My Life
The devastating effect covid had on my body and how I’ve learned to live with it
I went from being one of the healthiest and fittest people I knew to barely walking. It all started in August 2021 when I contracted Covid. What began as a typical case eventually triggered the worst headache I ever had which lasted two grueling days. When the headache subsided I was left with numbness in my feet and heaviness in my legs. It was exhausting to walk. While it was concerning I figured I was experiencing long co-vid and eventually, my symptoms would subside.
In the coming months, I saw several doctors and did a series of MRIs. The MRIs came back clean and although a few conditions were suspected none of the doctors could give me a definite diagnosis. Despite feeling like an elephant was on my back I could still jog and walk long distances. Then the symptoms got worse. Initially, I lost strength, but now I was losing proprioception – the body's ability to sense its position and movement in space. As my proprioception started to decline so did my balance. I could no longer walk more than a couple of blocks.
The Diagnosis
Over time, it became evident that the diagnosis best matching my condition was Transverse Myelitis (TM)—a spinal inflammation that can cause symptoms ranging from numbness and weakness in the limbs to mobility challenges, along with bowel and bladder dysfunction. In severe cases, it can lead to paralysis below the level of inflammation.
The standard treatment for TM involves a round of intravenous steroids to reduce inflammation, followed by intensive physical therapy to restore mobility. Recovery outcomes vary: about one-third of those diagnosed experience a full or near-complete recovery, another third recover partially, and the final third see little to no improvement. Unfortunately, I seem to have fallen into the latter camp.
Ironically, because my case was initially mild and undetectable by MRI, it was difficult to diagnose, leading to delayed treatment. I finally received intravenous steroids six months after my symptoms began, but by then, the damage had already been done. Although MRI scans haven’t confirmed it, my symptoms strongly suggest damage to the myelin sheath in my spine.
The myelin sheath is a fatty, protective layer that wraps around nerve fibers in both the central and peripheral nervous systems. It acts as an insulator, allowing electrical signals to travel quickly and efficiently between the brain, spinal cord, and the rest of the body. When the myelin sheath is damaged, these electrical signals become delayed or weakened, disrupting communication between the nervous system and muscles.
One of the critical processes affected by this disruption is reciprocal inhibition—the body's ability to coordinate muscle contraction and relaxation. In a healthy body, this happens automatically—when the quadriceps engage, the hamstrings release. In my body, because the signaling is disrupted my leg muscles remain partially contracted at all times, causing both stiffness and weakness. When I walk it feels like I’m simultaneously wearing stilts and cement shoes.
Everything I’ve Tried to Get Better
Over the years, I’ve seen countless doctors, healers, and specialists and underwent so many tests and treatments that I’ve lost track.
Below is an incomplete list:
Dr. Gelfand (Internal Medicine)
Dr. Charny (Nuerologist)
5 MRIs (including all of the brain and spine)
Dr. Lombard (Nuerologist)
Nasal supplements recommendation via Dr. Lombard
Long-Covid blood test
Extensive blood work on many occasions
Brain-body Yoga for several months
5 days of intravenous steroids
Dr. Robin Wolnitz (Neurologist & MS specialist)
Dr. Shin (Neurologist)
Spinal x-ray
Queens Chiropractor & supplement doc
Dr. Stern + vitamin protocol (Chiropractor)
8 sessions of hyperbaric chamber
A variety of different massages and bodywork
A Month of Acupuncture in Chinatown
3 months acupuncture + massage in Brooklyn
Over 10 sessions of electric stimulation wand therapy
Meeting with Kerl
Hair analysis
John Hopkins Hospital (Dr. Pardo ) - Neurologist & TM specialist
5-day fast + 40-hour water fast
Dr. Klimenko & Dr. Marc + magnetic treatment + nutritional program
Thermography
Rusk center visit
Physical medicine rehab Doc at Cornell
4 months of PT with Dr. Romano
9 months of PT at Fyzical
3 days Intravenous Stem Cells in Panama
Almost two years of PT with Gene
Two-week nicotine protocol
Various supplement protocols via mom
Despite, all of these doctor visits, tests, and treatments I can’t report any significant improvements in my condition.
Towards Acceptance: Navigating Hope, Fear, & Grief
The journey towards accepting my condition has taken me through currents of hope, fear, and grief. Early on I felt confident that my symptoms would subside and that recovery was only a matter of time. But as the months passed, my confidence withered away. I realized there was a hard pill to swallow - the possibility that I won’t get better. Over the years I’ve found more acceptance and I’ve also learned that the well of grief is much deeper than I thought it was.
My whole life, I was a highly active person who found deep joy and well-being in sports and physical training. Before my disability, movement was central to my routine— resistance training three times a week, yoga twice, and long walks to break up the workday, either for quiet reflection or deep conversations with friends. While I’ve retained my upper-body strength, most lower-body exercises are no longer possible—especially anything involving heavy weights or explosive movement. Losing this level of freedom in movement and physical strength has been beyond heartbreaking.
Aside from no longer being able to do intense workouts and long walks all activities that require me to be on my feet have become radically harder. Simple tasks like making the bed, taking a shower, getting dressed, and other household chores are no longer simple tasks.
The disability also reinforces patterns that can be problematic for my mental health. Leaving the house is a hassle, so I stay home more often. It's easier to sit at the computer so I’m more likely to keep working when it would be wiser to take a walk. Over the years I’ve found it easier to meet and connect with people online and my disability further cements that tendency.
When I’m at my computer, my disability fades into the background—it’s as if nothing has changed. But when I meet people in person not only is there the difficulty of moving around but there is also the heightened self-consciousness of walking with a cane. Although I’ve become more comfortable being an introvert I’m still highly extroverted by nature. As much as I’ve learned to be a homebody there is a wild energy in me that wants to explore the world.
Dealing with this disability is demanding in itself but the rest of life doesn’t stop. Through this ordeal, I’m raising two young children, finding ways to manage rising family expenses, and navigating my creative ambitions. Most days, the burden of this disability lingers in the background but when other stressors get activated, the challenge of living in this body becomes more apparent triggering overwhelm and sometimes a longing to escape existence altogether. There is no denying the epic suck but I also want to speak about the gifts of grace and gratitude that have emerged through this process.
The Silver Linings: Grace, Gratitude & A Beautiful Constraint
If my condition was any worse I would have been in a wheelchair. Thankfully, I can still climb stairs and, on occasion, walk as much as ten blocks. My training may be limited, but I can still do physical therapy, stretch, foam roll, hold planks, and engage in upper-body calisthenics.
I have enough functioning in my legs that I can drive. My career doesn’t depend on physical ability, and most of my work can be done from a computer. The fact that I largely don’t experience any pain due to this condition is a miracle in itself.
Losing my ability to partake in certain activities has been disheartening but unexpectedly, it has also been liberating. In a world of limitless options, this disability has served as a beautiful constraint, redirecting my energy toward what I’m most passionate about. Reading, writing, meditating, Circling, and engaging in deep dialogue are some of my favorite activities and they don’t require walking. While I can’t walk well I can sit my ass off which helps me go deeper into these practices. And for all this, I feel immense gratitude.
In What is Lost Wisdom is to Be Found
Years ago, during an Ayahuasca ceremony, I had a vision of the spiritual teacher Ram Dass which was accompanied by the message: Ram’s wisdom came from overcoming immense difficulty, and if you want to acquire a similar wisdom you will have to endure many challenges in the future. Who knew that like Ram Dass I would also have to navigate a disability which although less severe had come to me much earlier in life.
I sense the grace that Ram Dass came to embody was in no small part a product of him becoming wheelchair-bound. I’d like to imagine that I too have grown through my disability in ways I otherwise couldn’t. I might move slower, but I’m listening closer. And maybe in what is lost, there is a wisdom to be found.
“There is a brokenness
out of which comes the unbroken,
a shatteredness
out of which blooms the unshatterable.
There is a sorrow
beyond all grief which leads to joy
and a fragility
out of whose depths emerges strength.
There is a hollow space
too vast for words
through which we pass with each loss,
out of whose darkness
we are sanctified into being.
There is a cry deeper than all sound
whose serrated edges cut the heart
as we break open to the place inside
which is unbreakable and whole,
while learning to sing.”
-Rashani Rea
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thank you for writing this out. I feel grateful to have witnessed it. Encouraged too, that my own pains and setbacks will lead me to grace as well. Bless you brother