What COVID Taught Me About Post-Concussion Syndrome

I was anxious prior to the six-year anniversary of my concussion — cruel anticipation finally leading to a shower cry. But I was fine on January 4th. Actually, I was great. I lay in bed with COVID symptoms, but the chills and muscle aches and fatigue didn’t faze me. I have spent so much time in bed resting with post-concussive syndrome that it almost felt like a relief to have an illness overshadow whatever this is. A different kind of headache, a comfortable kind of tiredness.

The last thing I want to do is dismiss the pain and death and grief that COVID has caused for so many people. It is a scary and formidable illness, especially long COVID, and I am lucky that my symptoms only lasted a few days. I am privileged to have access to vaccines and boosters. But watching my body heal itself put me into such a state of wonder as I have been unable to recover from this concussion that happened six years ago — my right heel slipping on ice, my head landing full force on the crumbling concrete of the driveway. Even after all these years, I still can’t walk down a busy street or scroll on a phone or read or drive a car without debilitating migraines, dizziness, and unrelenting fatigue (not fatigue like I need a cup of coffee; I mean fatigue like I can’t walk to the bathroom).

I originally approached my concussion problem as I would with anything: research and then pros and cons lists. This led me to medications, injections, blood patches, radiofrequency ablation, platelet-rich plasma. Rehab and then more rehab. Lasers, Chinese herbs, syntonics. A surgery that pulled my scalp away to decompress nerves. I’ve had a sleep study, slept in hyperbaric oxygen chambers, had fingers down my throat to adjust my sphenoid.

Post-concussion syndrome is how you are labeled when your concussion symptoms don’t go away. They tell me: “It’s a nerve issue, a ligament issue, a dropped cerebellum issue. It’s coming from your neck, it’s due to your mitochondria, it’s your vision. No, you probably have a Dural leak. You have cervical instability; you don’t have cervical instability. There is something on your brain MRI — it may be a sign of trauma or migraine — but we don’t know so let’s not make an issue out of it. Put your energy into learning to live with your limitations. No, never stop fighting, you can always get better.”

Trying to get better is what I have been doing for the last six years. It’s what I do for a living, but this is hard to explain to the inquiring Trader Joe’s cashier, the old friend from college, my daughter’s orthodontist. But it is easy to explain that I had COVID for a few days, an ending that moved it into the past tense. Concussions are supposed to heal too, but mine changed my life. Maybe at this point, I should just move on. To what, I do not know. But this constellation of symptoms that together barely have a name, only labeled with the flimsy word “syndrome,” have been integrated into whoever stares back at me in the mirror.

In this new year, I am supposed to schedule a myelogram to find that elusive Dural leak, consult with a new functional medicine doctor to discuss coenzymes, fly to Chicago to see a vision specialist. Or do I stop running down rabbit holes with my precious disability money? Six years is a long time to be running. Maybe it’s time to look for new states of wonder, ones that exist outside of my bedroom, ones that cause me to look away from my body and into the sky.