What matters, in grey and white

Today, on Valentine's Day, I'm getting the MRI that shows if I've lost brain cells from Long Covid

On Jan. 24 I tweeted a thread about a small study published in BMC Neurology that showed loss of grey matter in all of the Long Covid patients that participated. I knew 100% is a substantial ratio in any scientific endeavor, so, I was interested in learning more.

The study was done by my (now) neurologist Dr. Ted Rothstein at the George Washington University Neurology Center in Washington, D.C.

This morning, I’m peeking into my own brain with the scan Rothstein used on his Long Covid patients. During our visit, he suggested I get the 3D VBM MRI that measures grey matter loss, or brain damage. Essentially, I will see if COVID-19 has killed my brain cells, inhibiting my cognitive function.

Morgan Stephens @morganstephensa

NEW: Decrease in the brain’s cortical gray matter found in all 24 Long Covid participants via 3-dimensional voxel-based morphometry (3D VBM) MRI vs controls. “We need funding so we can expand this research,” lead researcher and GW neurologist Dr. Ted Rothstein told me. 1/5

I pondered if knowing if I have this loss was the right decision. Why care? Why now? Another MRI?

I’m clearly writing again, so there has been some improvement since a reinfection and relapse in June 2022. There is a price for exertion, though. The longer I type, the more the head pressure, the foggier I get, the pain protrudes and tightens, and my world tilts.

Also, I know I’m sick. I know my brain function has changed since I got sick. And I have a vague idea of what, over time, has made incremental improvements in my cognitive function.

This MRI is different though. It’s called a “Three-dimensional voxel-based morphometry MRI.” It’s a scan that no neurologist brought up to measure my brain—or the loss of it—until Rothstein.

3D VBM MRIs measure grey and white matter and structural changes in the brain.

“Pathological changes in the brain resulting in cell loss manifest as loss of brain tissue, or atrophy, which can be detected by structural MRI,” stated an NIH description of this MRI technique. “Regression analyses can also be performed across voxels to assess neuroanatomical correlates of cognitive or behavioral deficits.”

It’s used to diagnose neurodegenerative diseases like Multiple Sclerosis, Alzheimer’s, Epilepsy and Parkinson’s patients.

This will be my fourth MRI, but my first 3D VBM. The past three MRIs showed me to be “completely healthy” as I stood there deteriorating, 20 pounds underweight, barely able to hold myself up, my speech and perception zombie-like. That was late 2020 early 2021. two years have past. We’ve learned more about COVID-19’s implications on the body and Long Covid, too.

I also want to know because as a patient that’s been gaslit and traumatized by some of my early medical visits—while greatly heartened by others later in my journey—I want anything that shows tangible proof of neurological and immunological change in my body. This matters. The psychologizing of post-viral illnesses, like ME/CFS and now Long Covid, is not new. Yet, history is repeating itself with large, reputable publications publishing lazy journalism that ignores thousands of biomedical studies showing blood clots, endothelial damage, organ damage, viral persistence and T-cell dysfunction, myocarditis, and now, loss of the brain’s grey matter. It’s harmful to patients, both present and future.

So, as a journalist and Long Covid patient, it’s my responsibility to do what I can to find out what I can in everything about my illness, for myself and the estimated 23 million Americans suffering from it. And I’ve made my peace with updating *the world* about my very personal health issues.

Also, it’s Valentine’s Day. What is romance if not sacrifice, support and love in the face of the unknown?

My husband will be driving me to the imaging center in an hour. He’ll stay by my side in the sterile hospital room while they wheel me in to that futuristic donut machine. As they click that notorious white plastic shield closely over my face again—the one nurses ask, “Are you claustrophobic?” And if you answer yes, they give you a sedative. “No,” I tell them, I have a routine—I’ll know he’s there no matter what results I get.

I have my toolkit ready: ear plugs and eyes tightly closed for as long as it takes. I focus on my breathing as the piercing puncture-like sounds of magnetic resonance chalk up the organ that holds every memory, emotion and thought I have ever had. And the one that holds my future.

The beeping will only add to the constant migraine pain. The MRI tech next door will sit and look at me—the me in grey and white on their pixelated screen. And later, a specialist will analyze my brain. It’s a straightforward, really. Yet it holds the cards to my life.

It’s still dark out. My husband is sleeping. I’ll wake him soon and, without missing a beat, he’ll crawl out of bed, throw on a sweatshirt and drive us across D.C. before sunrise. We’ll traverse it as we have before, jumping into the deep, together. Later we’ll exchange paper cards of “Be Mine” and “You Complete Me,” with scribbled notes inside, my world shifting from the greys and whites of the unknown to the loving knowingness of reds and pinks.