Pemphigus Prepared Me to Help Others During the Pandemic Rebecca Oling
T
he last year has felt like a blur without the anchors of daily life, like getting in the car, going to work, leaving for lunch, or coming home. The moments in the car waiting for kids at school or running to the store for an item or two we needed were lost. With none of my anchors, it felt like I had lost my freedom. It was all seemingly gone. Having a rare disease can strip you of a lot—time, power, and security. It can fill you with fear, anguish, and worry. Early on, I saw the pandemic coming. I was attentive to early news reporting, and I got my ducks in a row. Being diagnosed with pemphigus has taught me that I must advocate and watch out for myself. In January 2020, when COVID-19 was discovered in Washington state, I had, somewhat robotically, added to my pantry. I didn’t know toilet paper would be so hard to find, but I had enough anyway. It was easy for me to rationalize stocking up on beans, canned tomatoes, and dried veggies. I could always donate them if I didn’t use them. Also, why not get a couple cases of broth cubes? That’s not obsessive, right?
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Quarterly | Spring 2021
By February, I tweeted with a woman stuck on The Diamond Princess cruise ship that was quarantining in Japan. She was named in a news report that talked about the ship’s predicament, and I reached out. I thought about how hard it must be for everyone on the ship. I couldn’t imagine. She told me how the virus spread and infected people. And the pandemic began …. I carried a little extra Purel, kept more distance from other people, and used cleaning wipes on shared surfaces. A coworker laughed at me when I carefully used my sleeve to open a door for a meeting. It was infuriating, and I felt humiliated. Maybe they were in denial? Maybe I was losing it? I wrote to our rabbi in early March and asked him how we could help our congregants and amass a volunteer army: My feeling is and has always been . . . if I am well enough, I should spread that love and strength. I have a rare autoimmune condition, and I work hard to help educate the
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