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Life With Multiple Sclerosis in the Year of COVID

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Back in mid-March, during Spring Break, our daughter went to a basketball camp. Just a few hours a day to work on her game and burn off some energy.

As I dropped her off one morning, I noticed my car was low on fuel so on the way home I hit the gas station and filled up.

That day was March 12.

It’s now the last week of December and my car is still running on that same tank of gas.

That’s the kind of year it’s been.

As the days ticked by it feels like both nothing was happening, yet everything was happening.

There was no “How to Live Through a Pandemic” manual. And it has showed. Some days, it felt like the country, our world — all of us — were just making things up as we went along.

It’s been hard to find a rhythm to each day, let alone write about living with MS (multiple sclerosis).

It seems, at best, quaint — even a little silly ­– to be talking about my chronic disease while the world is in lockdown or in perpetual fear/confusion of COVID-19.

Writer’s Block?

This year has just been full-on Life Block.

My primary focus since spring has been how to best keep our family healthy. Mentally, physically, emotionally…

But it’s been hard to maintain positive spirits, feeling trapped in our own homes with so much of the time is spent talking, reading or watching the latest about the virus and the related shutdowns or worse, deaths from it.

For the parts of our life that have returned to “normal,” it seems somewhat forced and, at times, kind of unreal… even fake.

The kids are back in the classroom but in a modified form. They see their friends but can’t really be free and hang out as regular teenagers would.

Sports are on TV but the stands are mostly empty or filled with cardboard cutouts.

Hollywood is releasing new entertainment but theaters and music concerts feel like relics from the past.

It’s hard to keep track of what day of the week it is; so “Blursday,” it is!

Masks are now worn every day, not just Halloween.

Holiday trips to see the family have been replaced with Zoom calls or downsized to socially distanced gatherings outside.

A cough is no longer a cough and a sneeze is no longer just a sneeze — much to the dismay of allergy sufferers.

Some mornings I worry whether the sore throat I woke up with is a cause for concern… or if the constant physical fatigue and mental confusion is something larger than my MS.

That’s how bizarre this year has been…I’m actually hoping it’s MS — because that’s the devil I already know.

In a way, managing my disease has been a second career since I was diagnosed in 12 years ago. And pandemic or not, I have constant reminders that I’m still battling MS.

Since I haven’t been to acupuncture since March, standing on my left leg has become difficult again and the electric shocks throughout my body have returned in full force.

Some days it feels like the odd sensation in my left hand and arm is worsening, making it even more difficult to do basic things like tie my shoes or button my shirt.

Other days I continue to struggle with muscle spasms, vertigo, extreme fatigue or brain fog.

To keep our spirits up, I’ve baked a lot — trying to make the world a better place one brownie at a time.  We’ve also stayed connected by Facetiming with old friends and attending socially distant, driveway happy hours with neighbors.

For a laugh, I even grew a moustache and then more comically I tried, via Youtube workouts, to get six-pack abs. Note: it’s much easier to grow a moustache!  My wife lovingly tells me I’ve built a two-pack, so guess I’ll take that as a small victory.

I’m miss being able to hug extended family, shake hands with friends and not going anywhere as my car sits idle in front of our home.

I’m tired of Life Block.

Here’s to never having a year like 2020 again… or growing another moustache.

Originally published: December 29, 2020
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