The Short List

Two months into the pandemic, I'm thinking about what's most important.

These are strange days we’re living in. Personally I feel like time has slowed down dramatically in the past two months and the results aren’t all bad. Yesterday I looked at my calendar for 2019 and realized how on-the-go I was last spring. In many ways it’s been great to be home, to be quiet and reflective. I’ve had time to read and write, and I’m available for key domestic projects like letting the cat out. And in. And back out again. It’s really a part-time job and I don’t how in the world she got along without me before.

Much in my life remains unchanged; I’m one of those introverted types who doesn’t struggle with social distancing, and I’ve worked at home on and off for fifteen years. Still, I’m confronted daily with how things have changed, and the many activities I once took for granted that now seem impossible. The hardest thing has been the inability to see my mother and four siblings, including my sister Margaret.

Margaret’s has had a unique set of challenges during this global crisis. The year 2020 didn’t exactly start off as a banner year for her in the first place. Margaret’s autism demands structure and order to fend off anxiety, and her routine had already been upended last fall when our mom had a bad bike wreck. It’s hard to keep Mom down, but she couldn’t drive for several months, which meant she couldn’t take Margaret to swimming practice. My brother Larry subbed in, picking Margaret up at her house, driving her to the pool, praying she’d come out of the locker room with her suit on right side round and cheering her on from the bleachers.

Then in January, Margaret got a pink slip at work. The orthodontist who had employed her for several years was laying off staff, siting financial difficulties. Though Margaret only worked there a half-day on Wednesdays, it had been a highlight to her week. She chose her outfits carefully and sometimes wore makeup. A noticeable characteristic of her autism is that she has difficulty communicating, and yet we all noticed her vocabulary improving with this job. She loved her co-workers and had picked up come office lingo. “Well, hello there!” she’d trill when coming in the door.

February came and other activities began to constrict with the fear of Coronavirus transmission. Swimming practice was postponed. By March it was clear that Washington State Special Olympics—which Margaret loves to compete in—would be cancelled completely. Sunday afternoon bible study with her friends stopped. Visitation to her group home was restricted out of concern for her roommates with underlying health conditions.

Then in April, our mom got sick. We don’t know if she had Covid-19 or not because she was, thankfully, not ill enough to go to the hospital. But she was wiped out for two weeks. Again, my brother Larry stepped in to help (My typically developed siblings and I have always agreed that Larry is nicest.), which assuaged our worry about Mom, but Mom’s illness meant Margaret was even more isolated.

Margaret could no longer visit Mom on Monday afternoons as she has been accustomed to doing since she moved out of our parents’ house in the 90s. And then came a triple whammy—Easter Sunday, Margaret’s birthday and a Mom Monday all in the space of a few days. Margaret pretty much came unglued.

The explanation that “Mom is sick and you can’t see Mom” was met with frustrated yelling and shoving, tearful apology and pinching.

Who can blame her? More than ever, I think people can empathize with that response.

Margaret’s frustrations are heightened, I’m sure, by the fact that we recently lost our father. In January, before the world turned upside down, Dad became ill and declined very quickly. Before he died, Mom took Margaret to see him in the hospital though he was no longer responding to people. It was important, we thought, that she see him.

“Dad’s sick,” Margaret said.

“Dad’s coming home?” she asked and Mom said no, Dad isn’t coming home, honey.

Margaret was still asking this after the funeral. While the service offered the rest of us some kind of closure, I imagine she was still thinking, “Where the hell did Dad go?”

And now Mom was sick.

“Mom’s sick,” Margaret said to the staff at her house.

“Mom’s in the hospital?” she asked. No. Mom wasn’t in the hospital, they told her. She was at home resting. This was not enough of an answer for Margaret.

We do what we can. I called Margaret and sent her postcards. I told her I was staying home and our other three siblings were staying home. But I don’t know if that helped. What does it mean to her that nobody else is going to Special Olympics or the pool or to work or to Mom’s house? The whole country has struggled with the same concepts as things shut down.

Happily, Mom recently felt well enough to drive over to Margaret’s house and bring her hot chocolate from Starbucks. Mom said that when Margaret saw her get out of the car, the bald relief on my sister’s face made her want to cry. They sat on the porch, six feet apart in the weak sunshine, and Margaret smiled and laughed. It helped.

There are so many families like mine in this country and in this world. Millions of Americans with disabilities have underlying health conditions, which make them much more vulnerable to infection and thereby raising the stakes of every other facet of this crisis. The also often live apart from their families, which makes them more isolated during times of crisis.

As I wrote in my previous post, other adults with disabilities have faced a range of restrictions and difficulties during the pandemic—from not being able to see their families and not understanding why to serious health risks and the threat of unequal access to health care.

I feel fortunate that Margaret lives with two roommates she loves in a house staffed by kind people. She is healthy and cared for and has four siblings who love her. I know that we will all do what we can to help her cope during these strange days and as we move forward toward tentative reopening and whatever comes next.

Like most people, I’ve stopped asking myself when things will go back to normal. Now I’m asking when will things get better. And by “better” I mean that we will be able to gather with our friends and families again in some fashion. When I get frustrated about living with uncertainty and having to cope with ever-shifting guidelines, it helps me to remember that Margaret has been doing all that for decades, living in world that asks her to operate by rules she doesn’t understand.

People often tell me that the stories I write about Margaret reveal something about the world that they didn’t understand, a different way of seeing things. But I find that writing about her, usually illuminates similarities between us.

Early in the pandemic, when I was struggling against the sprawling sense of general anxiety we all felt, wrote a list of what it was I was missing. What were the specific things I wanted to be able to do again that would make my life feel OK? It’s a pretty short list: See my family, hang out with my friends, play outside, and get back to work. Margaret wants the same things I do.

As we move slowly toward reopening in my town, the state and the country, I hope I can retain what I’ve learn about myself and my priorities. If nothing else, Covid-19 has reminded me that the things we all value most are simple.

What’s on your short list?