This pandemic seems to have no end. But years living with sarcoidosis has taught me we can get through this.

By Rebecca Stanfel,

The last year has brought what seems like a lifetime of deprivation to many suffering through the pandemic. A year can feel like an eternity. But I’m living with a different sense of time. For me, a year is just not that long.

For the past 17 years, I’ve been living with a chronic and potentially lethal inflammatory disease called sarcoidosis. When I was diagnosed, my 3-month old baby was out in the waiting room with my parents. Andrew is a junior in high school now.

I routinely “lost” whole years when my sarcoidosis attacked my heart and brain. When Andrew was a toddler, intense vertigo kept me trapped in bed for well over 12 months. I could map every crack in our ceiling. On “good” days, I’d manage to crawl downstairs to eat a family dinner. I lost the ability to work inside or outside my home, drive, go to the store, cook dinner, have friends over or exercise.

As much as I hated being confined to bed at home, hospital stays were worse. I spent four months as an inpatient the year Andrew had his bar mitzvah. I got out in time to celebrate, but I was back in the hospital a few months later for the entire summer. That was a long year.

This isn’t a sob story. I don’t need pity. I feel like I’ve managed quite well, all things considered. I’m sitting here typing this. I’ve also gained an unusual perspective.

I know this past year has been incalculably hard even for those fortunate not to be dealing with the death of a loved one or the sudden onset of poverty. I know how isolation, anxiety, loneliness, fear, boredom, the disintegration of routines hollow you out. I lived with this hollowness for 16 years before the coronavirus arrived at the door.

This pandemic year has been hard on me personally, beyond my usual problems with sarcoidosis. Because of my risks of dying from covid-19, I reluctantly followed my doctor’s advice and moved out of my family home to protect myself from Andrew and my husband, Jay, who couldn’t shelter in place indefinitely. I lived in a separate apartment for eight months. Now that I’m fully vaccinated, I’m back sleeping next to my husband and eating family dinners at the same table with the people I love.

I hated being apart from them. I hated missing some of Andrew’s final months at home before college. I hated not being able to hug them. I hated physically backing away from my son. I hated fearing for my life.

But my years with sarcoidosis made all this feel more possible. I’d learned that romantic love and parental bonds can hold up to long stays in the hospital. I knew a confined and boring year wouldn’t kill me. I had the emotional musculature in place already.

I don’t think we’re done with covid-19, although we all desperately wish we were. Even if the disease vanished tomorrow, millions of Americans are grieving the deaths of loved ones, millions more have been thrown into poverty, thousands of health-care workers are dealing with trauma, an unknown number of us are disabled with “long covid.” Our kids have fallen behind in school, and the pandemic highlighted the enormous inequities in our health-care system.

I know this isn’t what you want to hear. We all want to be told that we’ve been brave and good, and now that we’ve made it a year, we’ve passed this difficult test. Let’s move on.

We all have been brave and good. But we can keep going, keep being brave and good. We have to. We haven’t vaccinated enough people to stop yet and there are vaccine-resistant variants in different communities. It can feel impossible to keep at it. But it is possible.

I know firsthand that we can do it.

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