Coronavirus Diaries is a series of dispatches exploring how the coronavirus is affecting people’s lives. For the latest public health information, please refer to the Centers for Disease Control and Prevention’s website. For Slate’s coronavirus coverage, click here.
Two years ago my husband, Brian, was diagnosed with a rare form of muscular dystrophy, a condition that causes progressive muscle loss, most importantly to the ones that help you breathe. His immune system is strong, but his lungs are not. A severe respiratory infection could cause permanent damage to his already-weak breathing, requiring him to use a ventilator, or worse.
Before we were on the brink of a pandemic, our lives were routine (or as routine as a toddler allows—I found out I was pregnant less than a week after the diagnosis). My husband went to the hospital every two weeks for an all-day infusion, excelled at his own job as a nurse, wore a breathing device every night, changed more than his share of diapers. I panicked quietly when we picked up our own personal germ-conduit from a sniffle-filled day care, especially during flu season, but otherwise just tried to do my best. Now we face the coronavirus, which can cause just the kind of lung damage in high-risk patients that worries us. The dread was always there, but these days, it feels bigger.
As New York City reveals its first cases, the effects on the city are visible, but barely: a few more masks on still-crowded public transit; well-stocked drugstores with a handful of completely empty shelves. Our own family’s practical response to the virus feels mild. We can only do what many others are doing to prepare right now: more hand-washing, buying a stash of Mucinex, rounding up a few bottles of hand sanitizer from purses. I put in an order for a month’s worth of diapers, toilet paper, cat food, box milk, and toddler snacks, just in case these essentials become scarce the way hand sanitizer has. My employer has graciously noted my husband’s condition and granted me permission to work from home if needed. But Brian needs to go in; you can’t be a nurse from home. He checks his phone off-hours, something he normally rarely does, for city and state policies he will need to implement at work for his patients. Brian says he doesn’t feel “high-risk”: “Your mind doesn’t always remember what your body can’t do.” His attitude is to deal with things if they come. I’m the worrier in the family.
Last Thursday, I booked him a hotel room for a night because our toddler hasn’t allowed us a night’s sleep in weeks. Seeing him exhausted and worn down when our immune systems are more important than ever is terrifying. Planning, for us, takes on a whole new level of complications. If my son or I were exposed, or if the virus exploded in New York, how could we protect him from getting it? Hiding out in a hotel is far from affordable. He can’t stay out of town with his parents; if he were incubating the virus, that would risk their health and that of their circle of older friends. Plus, he needs to go to the hospital for his infusions. As long as he’s healthy, he needs to keep doing his job; finding a new one that fits with his condition and allows a sick day every two weeks would be a challenge. We might be fine now. But if that changes … we realize we actually can’t do much to keep him safe.
Worrying about my husband is nothing new, but the coronavirus has turned up the volume from a background hum to distractingly loud. Although there is a lot of uncertainty surrounding the fatality rate, there is one thing everyone agrees on: It is concerningly high in groups with underlying illnesses. I think about the moment I would have to collect myself and permanently shatter my son’s world. In a moment of weakness, I confess the premature grief to my husband. He tells me cheerily that he could be the one left a single parent—I could get hit by a bus tomorrow.
But the reality is that he is the inconvenient counterpoint to the reassuring statements about the coronavirus: “Healthy people won’t die from this”; the critically ill people you keep hearing about often have an “underlying health condition”; “it’s the same as the flu.” (I wish people would remember the flu is an endemic virus that kills up to 60,000 people in the U.S. each year even with a vaccine, and is also a serious threat to my husband.) These casual comments, practically boilerplate in news stories, each feel like a punch. I should ignore them, but I cannot. When people use them to dismiss concerns about the virus, it feels like learning my husband is disposable.
We might be in the minority, but our family and our worries are far from unique. Throughout my work as a science writer, and now a genetic specialist returning genetic findings to families, I’ve worked with many, many people whose children have conditions that might weaken their immune systems or breathing. For parents of children with challenges, the usual parental concern of wondering what might happen if they themselves get sick or die takes on a whole new meaning. Many of my friends have children with serious health conditions, elderly family members, even close family members with severe medical conditions that they usually keep private, as we have tried to do till now, a luxury that no longer feels possible.
I have broken our family rule of not mentioning my husband’s condition online to try to remind people that “high-risk” is not an abstract concept; slowing the spread of the virus by hand-washing and staying home if you’re sick is crucial. And for all the people glibly announcing that the coronavirus will be mild for most, I’ve had friends and acquaintances I would never have expected reach out with concern. I’ve even seen posts from people offering concrete help to anyone who may be vulnerable, like offers to pick up groceries or medications so they can stay at home. We all hope it won’t come to that. For now, I try to look both ways before crossing the street and get some much-needed sleep.