Thriving in the Face of Fear

What I learned from hovering in the corner

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If she could find beauty, so could I
If she could find beauty, so could I

I live with fear every day. I live with it today, and I lived with it yesterday, and I lived with it before I had ever heard of Covid-19 or Coronavirus or even Wuhan, China.

When my daughter, Dalia, who is now 15, was diagnosed with MERRF Syndrome, I didn’t know how afraid to be. I’d never heard of MERRF and given that only 2 in a million people have it, the research was fuzzy enough that I could convince myself the news was a crushing blow, but not a devastating one. Only then she got sicker. She stopped being able to walk. She couldn’t eat anymore. She got a trach and couldn’t breathe without a ventilator. She had a tube coming out of her neck and braces on her legs and hearing aids in her ears and a feeding tube in her belly. There was no more kidding myself. This was scary stuff.

I wanted to wrap myself in the fear and live right inside of it. If the danger danced too close, maybe the fear would repel it. We were living on the precipice, so living in fear made sense.

But somewhere along the way, I learned that living in fear would suffocate me. And more than that, I honestly didn’t have time to be consumed by the fear. Being consumed by anything is a time commitment, and fear is no different – you have to read everything ever written on the source of your fear and maybe even hover in the corner sometimes. It takes up all of your mindshare, so there’s nothing left for, well, anything else. I was too busy for all that. I needed to nurse my daughter while also mothering her; I needed to be whole for my husband and my family, my job and my friends.

I was still terrified. But now, instead of living in fear, I started to live with fear. I saw that it was okay to let down my guard for moments or even hours at a time. Fear could be on one side of me; it wasn’t going to leave entirely. But hope or happiness or even laughter could be on the other. I could go for a walk or play a game or do something else that wasn’t even a little bit related to the scary stuff. And if I needed to hover in the corner, which I still did sometimes, I could hang twinkly lights and bring a cozy blanket and a great book and a glass of wine into my corner. I’d make it a beautiful corner.

Covid-19 is a new kind of terrifying, and I think we’re all going to be living with fear that continues to unfold — and maybe even gets bigger — day after day. I just hope we can find a way to carry on alongside the fear, rather than be consumed by it.

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