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Please Don't Compare My Chronic Illness Life to Your COVID-19 Life

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For most, the pause button is two vertical lines on their favorite streaming service. It isn’t a feature of life. But for those living with a chronic illness, we have had to learn to live life managing the pause button. We have had to put faith in something more than what tomorrow will be, because often tomorrow is on hold. 

For some of us, we learned these lessons at a young age. I know the first time I remember hitting the pause button. I was in kindergarten and was going into my third open-heart surgery. It wasn’t something you could slip out the back door and do without anybody knowing. I think that was when my family and a cherished teacher helped me embrace it and gain strength from sharing that experience.

For others, they have had to learn these lessons much later in life, like the parent of the chronically ill child whose career is on a near-permanent freeze, along with most of the rest of their life’s dreams. For others, it may be an organ transplant in their 40s, a process that usually takes years and will impact the remainder of their life.

Being successful at hitting the pause button often takes a shift on your perspective of life; it takes the searching of your soul to find what makes you go. There often isn’t an end date on the calendar; there isn’t a goal line that says you are finished. You have to overcome the fears that caused you to hit the pause button and find a way to hit play in your new microcosm. And each play in any given pause is different than the last.

In January 2012, I entered the most prolonged pause of my life. It finally ended in July 2013. Open-heart surgery, pneumonia, more surgeries, two unplanned intensive care unit (ICU) stays, three cardiac catheterizations, wearing a defibrillator vest for seven months, sleeping in a recliner for over a year. For me, it was finding small things I could literally push play on. Virtual learning, to stimulate my brain while I did the only thing I could do and sit in my recliner. I was preparing for my reboot, it was so much longer than anything I had expected, but I just had to have faith it would come. If you don’t put your faith in something, you will lose your way.

These days, I see many in the chronic illness community posting comments suggesting this current worldwide shutdown due to the coronavirus (COVID-19), a new-to humans virus that causes respiratory infection and can lead to serious or fatal health complications, is similar to what we experience. At first, I thought maybe they were right. Perhaps now others were feeling what it felt like for us to hit the pause button. But it didn’t take long for me to realize the flaw in this argument. See, the hardest part of being paused is starting again after the world was driving by you at 100 mph while you have been sitting idle.

So, the only similarity is we are both suspended in animation. Because trying to tell your story of why your résumé only plays select tracks like a badly scratched CD is admitting your liability to a potential employer. It’s hard not to tell your story, but it takes art to do so in a way that exudes confidence in your future ability to perform and your continued health. No matter how uncertain it may be. 

So, don’t tell me you know what it feels like to be on pause, because when I am on pause, there are no Zoom happy hours, no Netflix watch parties, no endless supply of livestream concerts. There aren’t any lines of people cheering on my heart surgeons when they get out of the operating room or any chalked up sidewalks praising my ICU nurses for getting my IV started, after six hours of trying so I can get life-saving medications I need.

No, when we are on pause, the rest of the world continues on. We are left to figure out how to make it seem like we were never on hold, that our CD doesn’t only play a few tracks. And that we are not a liability, but rather we have some of the most intangible assets obtainable, things you only gain from being knocked down, put on pause again and again, while trying to learn the art of hitting play as you go.

For more on the coronavirus, check out the following stories from our community:

Getty image by MangoStar_Studio

Originally published: April 10, 2020
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