Send Me More Stories About Chronic Illness
As told to Alejandra O’Connell-Domenech.
When I was forty-five, my toes went numb. My hands followed.
Next came weakness, painful spasms, and frequent falls. I broke the same leg twice. Finally, I was diagnosed with spinocerebellar ataxia (SCA), a rare genetic neurological disorder that seemingly affects nearly every part of my brain… including my mood. These days, I get outraged over nothing, or laugh uncontrollably at things barely humorous, or fall into levels of despair for reasons that defy any rational explanation.
I’m not alone in the house when it comes to disability. When she was 44, my wife Gloria developed vision problems. Everything was out of focus, and she couldn’t see anything out of the left side. This problem eventually went away, but it was the first episode of what would eventually be diagnosed as MS. Like me, she loses her balance a lot, and over the last two decades, she’s either injured or broken all of her limbs. With the help of a walker, Gloria can get out of bed and get to the toilet, but she otherwise never leaves the bedroom.
We make quite a pair, us two. Until recently, our life together had become one long day, interrupted by falls or near falls, broken bones or sprains, and the never ending struggle of trying to get to the bathroom on time.
We were ahead of the curve when COVID-19 came around, and social distancing became the new normal for everyone.
We were living a solitary existence, relying on each other for support and prayer. Once I loved to cook, but now we subsist mainly on scrambled eggs, hamburgers, and spaghetti—whatever is easiest to cook and swallow without aspirating. Bathing ourselves, washing our clothing, and cleaning up are all arduous tasks for us, so social isolation is our norm—even our preference—given how our once nice home has begun to look like someplace Grizzly Addams would live.
So in some ways, we were ahead of the curve when COVID-19 came around, and social distancing became the new normal for everyone. But as society as a whole has found creative ways to overcome isolation, Gloria and I have found ourselves reaping the benefits in a way that would have been scarcely imaginable just a year ago.
For example, since we are both religious, we used to be bothered by the fact that we couldn’t go to church. But now, no one goes—so Sunday Mass comes to us by way of Facebook, and Gloria’s bible study happens on Zoom, where she can catch up on the parish gossip with the other church ladies for the first time in years.
Our culinary lives have also improved. Before the coronavirus, delivery options in our area were pretty limited to greasy takeout spots… but with COVID-19 shutting down so many great dine-in restaurants, many of them are turning to delivering their meals to stay afloat. So now, instead of eating spaghetti or scrambled eggs most night a week, GrubHub offers free delivery of some of the meals we miss most… and they leave it on your porch steps, so you never come in contact with anyone that might infect.
Even our house is looking nicer. For years, we haven’t been really able to take care of the grounds, and it’s been decades since we’ve had anyone knock on our door, looking to make a few bucks mowing our lawn. But now, so many cooped up teenagers are looking for yard work online that all I have to do is respond to a Facebook ad to get someone to come by.
And best of all? I have been able to see and hear more from my adult children once to both starting working remotely. Once a rarity, video calls with my kids have become a daily occurrence.
It’s a strange thing, but our lives have actually become more sociable, now that there is a deadly virus plaguing mankind.
It’s a strange thing, but our lives have actually become more sociable, now that there is a deadly virus plaguing mankind. The Missus is talking with, and even seeing, people online who she hasn’t spent any time with since we had to stop going to church.
I can get young people to do my yard work without ever having to negotiate the price. And for the gourmet cook in me who no longer has the patience or coordination to do a four course meal, I can once again get the next best thing to dining out.
Even Grizzly Adams would raise a glass to that.
The only thing that worries us is this: how much of this new, socially-distanced world will still be around for us to enjoy when COVID-19 lockdown eventually stops?
