February 17, 2022
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Design by Viviana Quevedo; Photography by Valentina Barreto
Those of us living with a chronic condition are used to navigating an unknown future.
The official government-looking envelope arrived — tauntingly — in the mail. Without opening it, I knew it contained my toddler’s passport. Her first.
It came just as the threat of the Omicron variant was growing and Pfizer announced the company was delaying vaccines for kids under 5 years old.
I had already booked a cozy-looking townhome in a small village by the sea in the United Kingdom for the summer of 2022. I timed the month-long stay — a mixture of work and play — to coincide with when I thought my daughter would be fully vaccinated and when I’d be on an off-month from the Entyvio (vedolizumab) infusions that keep my ulcerative colitis in check.
I put the envelope in a pile to open later.
For much of December 2021, I was able to ignore my niggling sense of unease. The everyday chaos of parenthood, the holidays, and work were filling my days. The effects of the surge in COVID-19 cases fueled by Omicron, winter gatherings, and a general relaxation of precautions (or maybe simply exhaustion leading to complacency), were not yet an everyday worry.
A close family member coming in contact with someone that tested positive, followed by multiple acquaintances testing positive, and rounded out by the flurry of emails from my daughter’s preschool, quickly brought me back to reality.
That first week back at school in early January, it seemed like every day brought something new: “We’re updating our mask guidance for staff; here’s a reminder of the quarantine, isolation, and testing guidelines; we’re updating our mask guidance for students.”
What did schools email about before COVID?, a fellow parent and I wondered.
A colleague recently described being a mom in the last few years as treading water with a life jacket on while the rest of the country throws bricks at you. Add in a chronic autoimmune disorder and history of cancer, and you’re left treading water without the life jacket while the bricks are still being thrown at you.
Is it even possible to make peace with life in a never-ending pandemic when you’re chronically ill?
Online, people in one of my mom’s groups considered old-school chicken pox parties for COVID-19. In real life, it seemed like nearly everyone I encountered — be it strangers at the supermarket to casual acquaintances to family and friends — had joined the ranks of being not only exhausted by the pandemic (aren’t we all?) but willing to accept it as a part of routine life.
I longed to be one of them, but experience and life circumstances kept me wary.
Between living with ulcerative colitis, a history of a neuroendocrine tumor, and being the mother of a child not yet eligible to be vaccinated, I evaluate risk differently.
Long gone are the days when shopping was scary, when packages were carefully opened with hand sanitizer, when I crossed the street to avoid a fellow morning walker. Logically, vaccinated and boosted, the risk of developing COVID-19 for me at this moment feels similar to that of catching a bad cold or flu. An illness that might knock me down for a week. Even the risk to my unvaccinated child feels low. I know kids under 5 tend to do just fine with the virus.
But again, there’s that personal history. The odds have long not been in my favor.
I know what it’s like to spend more than half a year in and out of hospitals, to have a bone marrow biopsy without anyone there to hold your hand, to start every day not thinking about what you want to do but trying to determine just what your body will allow you to do.
Yet, it’s not even so much the worry of getting sick anymore. It’s everything else:
It’s the balancing act of protecting our physical and mental health. It’s a child that sobbed the first time I let her show a friend her room because she was both overjoyed to share her space and also worried about germs.
Nearing 2 years into this new life of ours, I feel like I’m living in a sandcastle at the beach on the edge of constantly being knocked over by the next wave.
One of my favorite doctors would often tell me, “We don’t know what we don’t know.”
It was a cautionary phrase she’d utter after answering a question when the answer was based on data, but there wasn’t as much data as she would like. I try to keep that in mind these days.
I don’t know what I don’t know.
It’s something you get reasonably comfortable with when you have a chronic illness. You don’t know how you’re going to feel tomorrow, let alone next week or 3 months from now.
Early last fall, I knew I felt comfortable enough to eat indoors at a restaurant. It was lovely, not the least of which because any time anyone else cooks and cleans makes me so happy these days, but to simply sit at a bar by myself, with a glass of orange wine to sip and a mushroom pasta to nosh was glorious. I knew I felt comfortable enough to get on a couple of planes in 2021, one to Italy for work and one to South Carolina.
Then winter came, and I knew there was too much I didn’t know. I needed to retreat a bit.
This is how I’m making peace with the never-ending pandemic: By trusting myself to know what works and doesn’t work for me.
I open the envelope, flip open the passport, and smile at my daughter’s adorable face staring up at me. I don’t know whether or not she’ll be vaccinated in July. I don’t know what will be happening with the virus. I don’t know how I’ll be feeling. But I trust myself and the world I’ve created for my little family. We’re going to the U.K.
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