Late last week, we spent time in close contact with two friends who have been as cautious as (and perhaps even more cautious than) we have been. On Monday, we received a message that they had both tested positive for COVID-19, and while he was asymptomatic, she was having a right go of it. We have, of course, rallied the troops to help them however they might need, canceled our social engagements (slight as they were), and begun testing regularly. For the sake of others, we are treating ourselves as likely infectious. And now, we wait.

Waiting for Any Disease Symptoms Puts You on Edge

Both Caryn and I are, perhaps, now hypervigilant to potential symptoms of COVID-19 — and aren’t there a lot of those! We’re trying not to be overly focused on the situation, but it’s also hard not to have it at the corner of our periphery most of the time. It reminds me of how many of us felt, acted, and thought during the first months and even years after being diagnosed with multiple sclerosis (MS). We wondered if this or that niggly bit was an MS symptom. Had it always been like that? Is that new? Is it different from how I felt yesterday? We became expert surveillance officers of every aspect of our bodies. Once we found our center, as it were, our new normal, then things stepped to the next level: Is this an attack? When something new did come along — a tingle, stiffness, a headache, blurry vision, a muscle cramp (I could go on, but the point is made) — we wondered if this was the first sign of an exacerbation. Was this the next rung on the MS ladder going down the slope of disability and dependence? Is this the one?!

Months and Years of Waiting for Symptoms vs. Days

They were difficult, pensive, antsy, paranoid times, those first months and years, but we got past them. If you’re still in that place, know that it’s not unusual and that you’ll get better at living alongside MS rather than carrying the burden on your back all day, every day. But now, with my exposure to COVID-19, I’m back in that place: waiting for the other shoe to drop. I’d like to think that I’m doing it better than I did in the early 2000s when I flailed about like an unattended fire hose. It’s different, of course, because MS is not infectious, and our concerns now are as much about not spreading the virus as they are about waiting to see if and how it will express itself on us. Caryn wasn’t in my life when I was diagnosed with MS. She didn’t have to witness those difficult days of my early life with the disease. Like many of us, however, I have learned from my experiences with MS, and perhaps, I’m taking this experience a little bit more in my stride than she is. No judgement there — we all stand today on a stack of our own yesterdays.

Whatever Happens, We Have a Backup Plan

We hope, of course, that we did not catch the virus. If we did, however, and we test positive and begin to show symptoms, we have laid in supplies and have a backup plan ready to put in action. Maybe that’s part of living with an unpredictable, progressive, incurable disease, too. There is always at least one backup plan ready to be dusted off and put into action. Until then … we wait. Wishing you and your family the best of health. Cheers, Trevis