After giving a talk on March 11, 2020, at Iowa State University, University of Maine sociology professor Amy Blackstone returned to her hotel room with a tickle in her throat.
The next day, she flew to her home state of Minnesota on a planned trip to visit friends and family, just as the entire country started to shut down as the COVID-19 pandemic began its deadly march across the U.S.
Blackstone was pretty sure she had the virus, since she’d been traveling around the country giving talks about her book, “Childfree By Choice,” since its release in June 2019. So she drove to a friend’s cabin in the woods in Wisconsin and spent two weeks sick and alone in quarantine before returning to her home in Bangor.
But COVID was far from done with her. In the two years since, Blackstone has grappled with an array of symptoms from long COVID, a condition that scientists believe affects up to 50 percent of people who have contracted the virus. Sometimes it lasts for a few months. For a smaller percentage, it can last for more than a year.
Like millions of others with long COVID, Blackstone has experienced debilitating fatigue, headaches, nausea and brain fog on a nearly daily basis. It’s upended her life, even as she’s among the tens of millions of Americans who have officially recovered from the virus that struck two years ago.
“It feels like I’ve been buried alive,” she said. “I spent an afternoon cooking last weekend, and it drained me to the point that I slept for two full days afterwards. And all I did was cook. My tank just empties really quickly.”
Walking up and downstairs in the downtown Bangor building she owns with her husband, Lance, is exhausting. She forgets where she puts household items. She has trouble focusing on reading and writing, or following the plots of movies. She hasn’t experienced the lung or heart issues some with long COVID have, but the headaches can leave her bedridden some days.
Long COVID has caused Blackstone to put her career on hold. She’s taken a medical leave from UMaine and said no to opportunities to give lectures, appear on television or podcasts, and write columns for the likes of the New York Times and Time Magazine.
“My life has been ripped away from me,” she said. “I’m just trying to take it one day at a time.”
Blackstone said it’s also been a struggle to find doctors in the Bangor area who would take her seriously when she explained that she believed she had long COVID. Blackstone said her primary care physician told her she was experiencing the fallout from a concussion, which he thought she’d gotten after bonking her head on a car door around the same time she got COVID.
Blackstone has had a concussion before, in 2013. This felt different. Nevertheless, she went along with the physical therapy her doctor ordered.
By the end of 2020, not much had changed. Her doctor and a neurologist both told her that long COVID wasn’t causing her symptoms. The neurologist, she said, outright denied that long COVID was a real thing, and said what Blackstone was experiencing was, instead, a mental health issue.
“I think, beyond the fact that there’s a documented history of women’s health problems being dismissed by doctors as ‘all in their head,’ there’s also the fact that even now there’s still so much we don’t know about the long-term effects of COVID,” she said.
Frustrated by the fact that, nearly a year later, she wasn’t getting much better, she decided to switch primary care physicians to a provider at the Mabel Wadsworth Center in Bangor, which in 2020 began offering primary care in addition to reproductive and sexual health care. There, she received a referral to a neurologist at Massachusetts General Hospital in Boston, and last summer, she joined the Critical Illness and COVID-19 Survivorship Program at Beth Israel Deaconess Medical Center, also in Boston.
“Switching to Mabel was a game changer for me. They actually listened to me. They saw me as a whole person,” she said. “I don’t know that I would have been able to get the help I needed if I hadn’t started going there.”
Blackstone is making progress, albeit slowly, toward returning to a more normal life. She knows, however, that she’s been lucky to receive excellent care, once she was able to be properly diagnosed and referred.
“I have a great job with amazing benefits. I am lucky to be able to access all kinds of treatment, and afford to stay overnight in a hotel in Boston when I go there,” she said. “But the majority of people don’t have that luxury. What happens to them? How do they get on with their lives?”
One of the ways Blackstone is working to retrain her brain to focus is by doing puzzles, knitting and, more recently, learning to cross stitch, which she particularly enjoys.
“It kind of gets me in this place where the nausea and headaches go away, and I feel really calm and focused,” she said. “And I don’t have to take a pill to do it. I’m so sick of having to take drugs to feel better.”
One of her most recent cross-stitch projects involved designing patterns of remarkable Maine women, which she dubbed “Mighty Mini Mainers.” Blackstone created 13 cross-stitched images of women ranging from Margaret Chase Smith and Dorothea Dix, to contemporary figures like Penobscot Nation tribal ambassador Maulian Dana, Bangor city councilor Angela Okafor and NASA astronaut Jessica Meir.
“Mighty Mini Mainers” is on display at West Market Square Artisan Coffeehouse in Bangor for the month of March. All 13 images are on sale, with all proceeds benefiting the Mabel Wadsworth Center — and there’s also a cross stitch of Mabel Wadsworth herself.
“If all these women can face incredible challenges and succeed, so can I,” Blackstone said.