What Multiple Sclerosis Taught Me About Living in Uncertain Times

Michael Wentink
Turning the page for a change
Turning the page for a change

Fatigue

Muscle and body aches

Shooting head pains

Loss of taste and smell

Nausea

Mental confusion

These are some of the symptoms of COVID-19.

They also describe a typical day living with multiple sclerosis.

A couple of years ago I wrote about how sometimes it’s hard to know where MS begins or ends. I suggested creating a TV show called “Law and Order: MS Victims Unit” to help determine what’s MS… or not?

In recent months, a random sneeze, bout with vertigo or even waking up with a sore throat has me wondering, “Is it COVID?” – creating yet another Law and Order spin-off.

To say I’m fearful about contracting COVID-19 is an understatement. In fact, I’m uncomfortable even writing about it. Each day, my goal is to keep my compromised immune system protected, but also active and ready for whatever may come along.

Growing up, I always felt like I got sick easier than other people. I still vividly remember an instance of somebody on a plane sneezing near me and I could almost feel myself becoming ill. So, when I found out I had MS, an auto-immune disease, it actually kind of made sense. My body is busy attacking itself which leaves it more prone to infection or other maladies.

Related:Download The Mighty app to connect in real time with people who can relate to what you're going through.

Over the years, whenever one of our children get sick, my wife is the primary caretaker. It’s a necessary precaution because, like most households, if one person gets a bug, there’s a good chance it will spread to everyone. We’ve learned the hard way that I’m the one most likely to catch it. While my wife plays nurse, I help out but also go into pseudo-quarantine. So, I’m already quite familiar with isolating myself to avoid getting sick.

A banner promoting The Mighty's new Navigating Coronavirus Together group on The Mighty mobile app. Click to join.
A banner promoting The Mighty's new Navigating Coronavirus Together group on The Mighty mobile app. Click to join.

Since March, when schools, offices and stores started shutting down, life has felt surreal. We all went into isolation. Our lives changed, seemingly overnight. It feels like we entered an alternate universe where the world both progressed 20 years into the future and regressed 200 years into the past.

Zoom calls have become a common phrase. As have virtual happy hours or birthday parades. Quarantining was something reserved for books or the movies. Our daughter even had a social distance parade for her elementary school graduation. Contactless delivery became standard for food, furniture, or even a car… the only thing missing from this Brave New World is having it delivered by drone or robot.

But at the same time, we went back to the 19th century and stopped traveling, eating in restaurants,  andgoing to movie theaters or shopping malls.

We spent extra time working on our homes, yards, even getting to know our neighbors, from six feet away, of course.

Related:How an Unexpected Injury Changed My Life With Multiple Sclerosis

Still, it’s the little things we miss. Taking my wife out on a date, hugging a friend hello or even just the mini-shops I’d do with my daughter at Wal-Mart to buy fun cereal for her and a sarcastic t-shirt for me.

After I was diagnosed with MS, I entered my own bizarro world of new beginnings and sudden endings. It consisted of words I had seldom (or never) used before like neurologist, MRI, Copaxone, IVIG, Gilenya, optic neuritis, vertigo, spasticity and drop foot. These are now a regular part of my vernacular.

As my health worsened, I eventually stopped working, which was a difficult and rocky transition. But it’s given me time to focus on my health — that became my new career.

Much like how we remember life pre-COVID, I’ve always missed the little things from when I still worked: The excitement of starting a new project, feeling proud and accomplished over successes and even the (often) silly banter with my colleagues. It all abruptly disappeared from my life.

I’m not making an argument that MS prepared me for this pandemic or that I’m somehow better suited to handle it. That’s nonsense.

But what I do know is the fear, frustration, confusion and loneliness that has accompanied COVID-19 has a very familiar, deja-vu ring to it.

Life is full of chapters. A mixture of emotions and experiences that are happy, sad, heartwarming, thrilling or even scary. The MS chapter has contained many of those, sometimes all in the same day.

On September 11, 2001, the world changed forever. It was hard to wake up the next day and experience life the same way. That was an awful chapter.

My wife and I lived in the Washington, D.C. area and our wedding was 25 days after 9/11.

In many ways, it didn’t feel right to be celebrating while a few miles away parts of the Pentagon were in ruins. Our city was on high alert, jet fighters can be seen flying overhead in some of our wedding pictures. Many family members understandably opted out of traveling to D.C. for our nuptials.

On March 11, 2020 we had another life-altering moment when the WHO declared COVID-19 a pandemic.

It has left us scared, confused and unsure of the future.

But this I know — whenever I look back at our wedding pictures, I’m reminded of how much we all needed that celebration. With all the uncertainty surrounding the world, it was a night to remember how wonderful life can be.

We will rejoice like that again. Maybe not tomorrow or next month, but in time, this COVID chapter will close and we will turn the page to something new. And I’ll be first in line to buy another sarcastic t-shirt.

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