It was a year ago this week that I found myself isolated, sitting in a room not much larger than a broom closet. I was waiting for the answer to a question; and I already knew what the answer would be. I was positive for Covid-19. My wife had tested positive a couple of days earlier, bringing the plague home from a student whose parents had knowingly sent him to school sick. I knew then that it was only a matter of time. What I didn’t know was how much time Covid would take from me and how the following year would unfold.
I’ve only had a handful of health challenges over my five decades. Childhood asthma. Scoliosis. An elbow reconstruction from sports and chronic injuries that I was too busy to stop and do anything about. And that’s the thing: Nothing had ever stopped me. Founding and leading a growing church; raising three rambunctious boys; writing a weekly column; gigging with my bandmates a few times a month; enjoying a busy social schedule; regular speaking engagements away; golf, cycling, hoops with the boys and regularly taking a thrashing from my wife at tennis; disaster relief projects; travel; turning out a book or major curriculum piece every year for the last decade: All that came to a jarring stop one year ago this week, with simply tying my shoes being the most adventurous activity I was capable of on some days.
For the first month of Covid my symptoms were typical of all we have come to know: Fever, cough, shortness of breath, fatigue. After multiple medical interventions I was dragged away from the graveyard, the fever finally passed, and active infection faded. But the other symptoms persisted, with brain fog joining the party, along with memory loss, depression, nerve and joint pain, headaches, dizziness, bone-crushing exhaustion, and raging tachycardia. I took several months off from work – and most activity – to try and “get over” it.
And that was the prevailing medical advice I got for a while: “Get over it.” Not that I’m throwing stones, for without medical professionals I wouldn’t be alive to celebrate this most auspicious anniversary, but wow, my experience was less than ideal. Here are some phrases I heard from physicians in the first six months of “long haul Covid:”
“It will pass. Just give it some time.”
“Looking at these labs, there is nothing really wrong with your body.”
“You look good. Are you not feeling any better?”
“This may be your new normal.”
“You should just try to live with it.”
Responses like these drove me to medical journals (not Youtube videos or conspiracy websites) and the emerging research into long haul Covid. I sought camaraderie with others, fellow long haul sufferers, both in person and online. And eventually, late in 2021, I made my way to the Vanderbilt University Medical Center Long Haul Covid Clinic. The Clinic’s website says: “We’ve put together a team of specialists ready to work with you to diagnose and treat your symptoms. We’ll put together a plan just for you to get you back to health.”
From the “team of specialists” assigned to me – an Internist, Neurologist, Pulmonologist, and Cardiologist – I learned that long haul Covid generally follows three paths. 1) Some patients have long-lasting active virus. Their bodies just can’t expel it, and the inflammation seems unending. 2) Other patients are suffering from tissue damage. The virus has done its dirty work to the lungs, heart, brain or nervous system. Such sufferers might have the hardest road back to health. And, 3) A group of long haul Covid patients are having an autoimmune or allergic-like response to the virus. That is, their symptoms mimic Lupus, MS, mononucleosis, adrenal fatigue, or twenty other diseases.
I fell into that latter category. My body was creating self-attacking antibodies. It was fighting itself, my immune system at war with my major organ systems. That, and my childhood asthma had come roaring back with a vengeance, resurrected by this insidious disease. Properly diagnosed with “Post-Covid Syndrome,” Vanderbilt went to work, indeed, putting “together a plan just for me” to restore my health. When Dr. Goyal, Director of the Long Haul Covid Clinic, compassionately said: “Tell me everything you have been going through,” I cried. When Dr. Miller said, “I can’t believe you haven’t had a pulmonary function test. We are doing that today – and I’m going to knock out that cough too,” I cried again. And when Dr. Dendy asked me what I wanted to get back to doing, and I answered, “I want to hike the Appalachian Trail and stand on top of the Smoky Mountains again.” He countered enthusiastically: “Oh, I’ll get you back there.” Well, I cried again.
Since those first visits I have cycled through a dozen different medication regiments, trying to find just the right combination. I have returned to Vanderbilt multiple times and spent thousands of dollars in travel, co-payments, and paying for tests, drugs, and procedures not covered by my insurance. It has been money properly invested, for I feel more like my old self today than I have in a year. I actually have hope that I just might fully recover (or get super close to it) in the months ahead. And I can sense a gathering internal energy that I haven’t had in the longest time. What will I do with this energy? That really is the question, one I don’t have all the answers for yet; but I’m working on it. Because I have this grace, this renewed opportunity in the second half of life, to live again. I don’t intend to waste a minute of it.