My mother died of myotonic dystrophy when she was 55. I also have this disorder and for every year that I’ve outlived her, I’ve celebrated my birthday by taking a weekend trip. This year, I originally booked a flight to Los Angeles but later changed my mind for a local destination—Santa Cruz.

Normally, I love this town’s bustling boardwalk and beautiful beaches, but on this weekend—March 7—I felt a growing sense of unease and vulnerability. I was aware that in Seattle, our northern neighbor, a respiratory virus had claimed several lives in a nursing facility. No matter what I did—even playing a few rounds of my favorite arcade game—I couldn’t shake a creeping dread.

During breakfast the next morning, a hotel staff member coughed, and fear shot through my body as I recalled a bout of flu I had struggled with two years earlier. My respiratory weakness and compromised immune system did not need another challenge. My spouse and I packed and abruptly ended my birthday weekend.

A month into this COVID-19 pandemic, I’m glad I got a jumpstart on my self-quarantine. Social distancing and lifestyle changes are an acceptable price to pay, considering the potential alternative. And for people like me with a progressive condition, much of this “new normal” is familiar. After all, I’ve spent years creating social boundaries—either because I’m too tired or because a friend has a slight sore throat.

Still, even for me, many of the restrictions have been challenging. Before COVID-19, I attended exercise classes so I could interact with others. Now I struggle to exercise alone. I used to invite people over for dinner so I could have more control over the food I eat. Now it’s just my spouse and me. I’ve been in a book club for 10 years, which has sustained me in so many ways—creatively, intellectually, and socially. A video meeting just isn’t the same.

I’ve also contemplated questions I’ve never considered before. What is the most efficient and safe way to bring food or packages into the house? Do I use a different antiseptic wipe for each hard-plastic container, or will one suffice for three items? Will my spouse and I experience more stress while being together 24/7?

But when life serves you lemons, you try to make the best damn lemonade possible. For me that’s meant subscribing to a video conferencing service where I’ve found virtual exercise classes, connected with friends, family, and my patient network, and signed up for two classes—one on sight-reading music and another on poetry. My lockdown is now an opportunity to broaden my horizons.

And each day, I want to change that lemonade to make it a little more interesting—a little sweeter or a little more tart. And I know in my heart that one day I’ll have an alternative to that lemonade. And it will be delicious.

Leslie Krongold, EdD, lives in Alameda, CA, where she leads support group meetings for the Myotonic Dystrophy Foundation. She also writes a blog and produces a podcast series called Glass Half Full.

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COVID-19 (Coronavirus) and Neurologic Disease Resource Center