When Chronic Migraine Meets a Pandemic
February 10, 2020: Washington, DC.
My mom and I were resting in our hotel room after a long day of advocacy training. I filmed a segment with PBS Newshour that morning, and the adrenaline I was relying on to power through the day was quickly drying up.
My boss at Migraine Again, Paula Dumas, called me with big news: our website was acquired by Everyday Health Group, a leading digital health publisher. They wanted to offer me a full-time position — and I would have to fly to New York City only a few days after I got home from D.C.
Traveling that much would wreak havoc on my body, but this was a once-time-in-a-lifetime chance — a chance to get off disability, to resurrect my atrophied career.
February 17, 2020
The Migraine Again crew flew to New York City to meet our new colleagues at Everyday Health.
February 20, 2020
On our final night in the city, we saw a Broadway play (my first!). I wasn’t feeling well and almost didn’t go, but I am so grateful I did. We sang, we laughed, we cried. We didn’t know that two weeks later Broadway would close indefinitely.
February 21, 2020
We flew home to California. The man next to me on the plane coughed for most of the flight and a few days after we got home, I got sick. As I was nursing my sore throat and head, social media exploded with news of the novel coronavirus.
I recovered from my illness after a course of antibiotics, thank God.
March 2020
My boyfriend Peter and I signed a lease to rent a lovely home together in Orange County, CA, with enough space for a yard AND a home office. I had been living with my parents for the past two years, and it meant so much to me to take this step toward independence.
Just as we were settling into our new place, the economy ground to a halt. People all over the country lost their jobs, their incomes, and their homes, just as I was achieving these adulthood milestones.
The grief that I feel for families and people struggling is also the fuel for gratitude. Having lost a large part of my 20’s to illness — jobs, stability, relationships, homes, ambitions — I know what it is worth to be able to work for a living. I know the dignity that comes with having your own home, and the devastation you feel when you don’t.
Unlike so many Black and brown people struggling through this pandemic, I have a safety net in my parents and their wealth. As much as I emphasize with those most impacted by COVID-19, the truth is that I will never really understand what it means to lose your job with no back-up. I can only acknowledge my privilege, emphasize with those who are struggling, and feel deep gratitude for the opportunities I was given.
Now, March 2021
Celebrating my achievements and success while the rest of the world suffers has been awkward. It has taken me a full year to share this news here: in part out of fear that I wouldn’t be able to handle full-time hours; in part out of respect for those who are struggling.
It has been hard. My weekends are mostly spent recuperating for the next work week. My brain rarely feels clear. (Cognitive issues like trouble finding words and issues concentrating are common Migraine symptoms). I’ve had to get comfortable showing up for Zoom meetings when my head is pounding, my eyes are blurry, and my stomach is churning. I’ve had to alter my expectations for myself and alter them again.
Ultimately, though, I’m proud and grateful as hell. I am terrified of getting COVID and never fully recovering. For the past year, I have been holed up at home, avoiding my family, restaurants, and grocery stores.
Living with an incurable chronic illness comes with a lot of trauma. Like so many other disabled people, the fear of getting sick and never getting better is not just hypothetical. We’ve lived it. We know intimately the grey area between life and death — illness with no remedy.
We know that survival is not enough. We deserve to live with dignity. We deserve to be loved and cared for. We deserve to be paid for our labor and we deserve to live above the poverty line.
Isolation, uncertainty, and health anxiety will not end for disabled people when the pandemic ends. We will adapt to whatever comes next. It is what we do. It is how we survive.
