Uncertainty.
Take a deep breath. And another.
Those of us with MS or another chronic disease are used to living with uncertainty. We don't know when another MS flare will sneak up on us, rob us of some vital function, make just a brief visit or stick around for a prolonged stay. That's the way it is with this bizarre disease, and in the weeks, months, and years after a MS diagnosis, we learn to cope.
But COVID-19 is a double whammy. It is hitting hard on so many levels. First, of course, are the health concerns. While we know this new virus is bad, we don't know how bad, how long it will last, how far it will spread. We think it is worse for people with chronic diseases and/or suppressed immune systems, but we don't know how much additional risk we have, as people living with MS. (I had my Ocrevus infusion last week, potentially reducing my ability to fight infection. Bad idea? I don't know.)
We know COVID-19 is less contagious than influenza, but it is more deadly. How much more? Is the case fatality rate 2%? 4%? Much lower, because we aren't testing and counting those with mild or asymptomatic infection? Is it really 15% in people over 80, or even higher when factoring in preexisting conditions? How are survival rates impacted by having diabetes, heart disease, or multiple sclerosis? We have so much to learn.
A second concern is the economic and societal impact. The huge music and film festival, South by Southwest (SXSW), was just cancelled in my hometown of Austin, causing some business owners to panic and creating widespread disappointment among musicians and would-be attendees. Events all over the country are being cancelled or postponed. Schools are closing. Vacation plans are being scrapped.
I've been reading about COVID-19 incessantly this week, and my initial sense that the hype and paranoia were unwarranted has shifted. I'm not stockpiling food, I'm not wearing a mask (it won't protect us from infection), and I'm not overly concerned about my own health. But I'm worried this virus is not going away soon. Spread of the infection is likely; containment is improbable. The ability to test more people for COVID-19 is a mixed blessing: Identifying people who are sick allows to us to take action to minimize spread, but it will also lead to a surge in confirmed new cases. Even if the situation isn't worse, new testing capabilities may make it look worse.
How do we weigh the risks and benefits as we make decisions in the coming weeks?
My 12-year-old daughter, Clara, often asks questions like "Would you rather eat a cup of live cockroaches or spend the night in a cage with hungry lions?" In my case, the immediate choice is not quite as terrible: Would you rather give up a much-anticipated spring break trip to California or gamble in a game where the odds are unknown and the consequences could be quarantine, serious illness, or absolutely nothing?
Uncertainty can be infuriating, even paralyzing, but as I have with MS, I will try to let it be a teacher and guide. I may not know what this week will hold, but I can be present in this moment. I can't control this virus, but I can try to meet each bit of news, each decision, with patience and grace.
Wash your hands – don't touch your face – cover your cough – don't go out if you're sick. I will follow the guidelines. I'll keep up with the news and probably cancel that trip to California. But I will also look for silver linings, and practice gratitude, and take each day as it comes.
P.S. Don't spend all your time reading the news, but for regular, reliable information, here are my best references: https://www.cdc.gov/coronavirus/2019-ncov/index.html and https://www.nytimes.com/2020/03/08/world/coronavirus-news.html
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