“This is what we should do,” one of my best friends told me a few weeks ago. “After it’s safe to travel, we should just treat ourselves and go for a river cruise in France.”
Yes, we should, I thought. How lovely. Except that, like millions of other people, I have a chronic illness, so my “after the pandemic” is bound to look a lot like my “before,” and my before never included a river cruise in France. I think my friend’s post-vaccination giddiness had momentarily made her forget. I have a variant of multiple sclerosis that features ongoing imbalance and fatigue that squashes me like a beetle every afternoon. You don’t want me on a boat.
I am mobile. I don’t use a wheelchair, and I don’t often use a cane. But when I do go out, I don’t go far, and I don’t go for long. What a weird surprise, then, to find joy in the pandemic’s additional confinements. And how equally startling to fear that those joys will soon end.
In New York City, where I live, the pandemic shutdown was ordered early last spring, and as the crisis escalated, so did shortages of toilet paper, Purell, and Clorox. People were desperate for cleanliness and safety. But when baker’s yeast could not be found for love or money, I didn’t think that people were desperate for bread. I felt that they were desperate for distraction, for pride in small accomplishments, and for the kind of comfort that comes when following a set of instructions produces a reliable outcome. I felt that healthy people had entered the world of the chronically ill.
“My whole life was already lockdown,” one of my neurologist’s patients told him when he asked her how she was coping. And I’ll admit that when I heard people complaining about their loss of freedom, my first, if admittedly guilty, reaction was “Now you know.”
They now knew how it felt to be cheated out of a holiday dinner, a graduation, a wedding; to miss the theater, museums, sports, restaurants, and, above all, visits to friends. They had discovered what it was like to wake up every morning in amazement that their circumstances had not changed, to go to bed thinking about all the things that they would have done if they could. And they even knew to be careful not to complain about it too much, because with the hospitalizations and fatalities climbing, they understood that so many people had it so much worse than they did.
After a few weeks of seeing Instagram posts of homemade baguettes, boules, and challahs, though, I started to wonder if my illness had taught me anything I could share, anything that might help my friends grapple with their newfound restrictions. I told them about the importance of establishing a routine so that work and sleep and trips to the refrigerator wouldn’t get out of hand. I described the joy of cleaning a closet so that order could be imposed on chaos, however minor. I explained that when you’re spending every day in one place, any window that shows movement—even of buses or bicycle messengers—is an affirmation of life. And I reminded them of the consolation of music, the comfort of well-loved books, and the virtue of remembering that no one knows the future. For the first and—I’m quite sure—only time in my life, I felt like Audrey Hepburn, who, in the classic thriller Wait Until Dark, plays a blind woman who uses her disability as an advantage. Trapped by a murderer, she smashes the light bulbs in her apartment, knowing better than her attacker how to navigate the darkness.
When everyone started arranging Zoom get-togethers, my world shifted into a kind of balance I hadn’t felt since I first was diagnosed with this stupid illness. We were all meeting in the same ways, doing and not doing the same things. The chance to go to a “party” without using up all my energy just to get there was (and still is) a revelation. I don’t need good balance to have drinks with friends if I’m in my living room. I don’t need a lot of energy if the party I’ve been invited to does not require grown-up clothing, or makeup, or transportation, or standing, or a day to recover. The two-dimensional screen, that glass barrier that healthy people said was keeping their relationships static and imprisoned, was a liberator for me. I finally had freedom from FOMO because everyone was missing out.
I also felt free from guilt, perhaps the sweetest freedom of all. To be chronically ill is, for many of us, to be chronically guilty, to vacillate between knowing one’s limitations and thinking that we can magically overcome them by force of will. “Could”s and “should”s do an elaborate tango: I’d go if I could gets entwined with I should go. We think: I should try harder. Could I try harder? I should. During the pandemic, the only shoulds have been to stay put, socially distance, and wear a mask. Find me a person who's chronically ill who hasn't at some point had to stay home, avoid social events, and, one way or another, put on a mask.
Now that my friends are reentering the world, their plans are flowering. “Won’t it be great to get back to normal?” I’ve been asked a bunch of times. Don’t get me wrong: If you’re a friend of mine, please don’t stop asking me to do things. I absolutely will have days when I will be able to join you. But when the pandemic is over, the chronically ill, like every group on the margins, will undoubtedly be left behind. That awful feeling—Wait for me! I can’t keep up!—will return. And the empathy of friends, which was such an extraordinary gift of the lockdown, will most likely turn back into sympathy (or neglect). Sympathy and empathy are both forms of love, but the first one separates; the second unites. What I want the healthy to remember, back in the three-dimensional world, is what it felt like to live in two dimensions. If “hybrid” becomes a lasting way to work, let it also be a lasting form of friendship. Don’t stop writing, and calling, and—especially—Zooming. If I can’t meet you where you are, I’ll still be here, on the little screen, and it will be wonderful to see you.