Watching Chris Cuomo last night work through his Coronavirus diagnosis and displaying his chest x-ray was amazing. In some ways, Cuomo became a folk hero of sorts, battling adversity to keep the public informed and outlining his self-quarantine modeling. However well-intentioned he was, Cuomo’s bravado perpetuates an ongoing problem: to stay employed, you must work through illness.
My company issued an internal employee policy that provides an additional amount of time off for COVID-19 recovery. All that’s required is the willingness to ‘self-disclose.’ They created a self-disclosure button in the HR portal. It’s easy. Click that ‘self-reporting’ button, enter the information, and submit.
In my world, any 60-year-old would likely not choose to self-report. For those in my age bracket, self-reporting It’s just another opportunity to eviscerate yourself to the sidelines, an exit to unemployment.
My Parkinson’s was diagnosed 45 days ago. Feels like a 1,000. I spent the first two weeks in a fog-just reading anything possible about Parkinson’s. Not usually a movie star biography reader, I read every word of Michael J. Fox’s autobiography in two days. However, outside of my doctor and case manager, I haven’t told a soul.
I experienced two weeks of reflection, then Coronavirus exploded. It feels 9,000 miles an hour since. Good or bad, there’s been no time to think about Parkinson’s. Neither have I thought of my normal daily position, the pain of dealing with loss, nor coping with demanding people who filter in and out of everyday life. What living with Parkinson’s has allowed me to d is notice something important. Just like pre-COVID, some days are good, some days are bad. Some days, the tremors were noticeable. Other days, it wasn’t. For four days, no Parkinson’s symptoms. Today? Bam. Back with a vengeance. No matter what I did, tremors rumbled.
Like Tom Hanks’ character in Cast Away talking to Wilson (a volleyball), I sometimes find myself talking to Parkinson’s as if it were real.
“God damn it. Not today. I have too much shit going on to deal with you.”
I am unfamiliar with this new world. I am lost. So, I read of a blogger who suggested I find celebrities living with Parkinson’s. My first search found Michael J. Fox, Muhammad Ali, Janet Reno, Charles Schulz, Linda Ronstadt, Johnny Isakson, and Billy Graham. Not that their stories aren’t compelling, it’s just that only three remain alive.
Another interesting thought about post-Parkinson’s diagnosis is cadence. The rhythm of 5 AM, 1 PM, and 9 PM Carbidopa/Levodopa ensures interrupted sleep. And even then, I sometimes wake at 2:00 AM, stiff. Afterwhich, I stumble to the recliner with the best intention of meditating, only to promptly fall asleep. I often wake exhausted.
Unlike Chris Cuomo, I will not publicly announce either Parkinson’s or COVID. I will never click that ‘self-report’ button. Sure, it’s probably the right thing to do, for both coworkers and me. But if I were working from home (being a member of the 55+ club), I’d likely mark my door with blood, keep working remote, and hope for a passover by the God of COVID.
The impulse to work through an illness is crushing, especially now, when workers with truly essential jobs face pressure to do likewise. In my career, I’ve never received a message saying, ‘You’re so important, we have to make sure you take care of yourself and your loved ones.’ Not once. Rather, my career was filled the mantra that devotion to retaining a job, meant personal sacrifice, for the workplace was the ultimate value.
As Joanna Wiess noted, “The impulse to prove an uncommon work ethic isn’t limited to pandemics. It’s on display when Elon Musk brags about working 120 hours a week, or when a high-powered female executive goes back to work within days or weeks of delivering a baby.”
I don’t like it. But’s that’s where America is.
It’s not some mythical inner spirit that helps me overcome an encroaching disease. It’s neither a Buddhist nor Christian philosophy. There’s not even a personal mission to the greater glory. For me, it’s the ‘stupid philosophy’ that allows me to retain employment. With over 10 million unemployment claims over the past several weeks, that’s important.
I don’t like it. I don’t want to have to work through the pain, but that’s where many of us are.
