Every week I go to Hermosa Beach to get some fresh air. Most weeks, I get there as the sun is setting, the sky is creamy orange-pink, and the clouds are fluffy. The predictability of this place calms me: the salty air, the sound of the waves, the rattle of people running, the chirping of seagulls and the wind on the sand. My visits allow me to clear my head for the week and reflect on the progress I’ve made mentally and physically.
About 2½ years ago, I started showing symptoms of COVID-19. But unlike my friends and family who have recovered from the infection, some of my symptoms continued. It took dozens of doctor and office visits to confirm that he had long-standing COVID.
I’m a data journalist at the Los Angeles Times and I have a great appreciation for spreadsheets, so I was inclined to track my symptoms.
My planner became a living document in which I detail the good and bad days using color-coded dots to denote how I feel. I used to take an even more comprehensive approach, recording every time I became short of breath, dropped my blood pressure, or lost my voice on a spreadsheet. The reality is that while note-taking was helpful to take to doctor’s appointments, daily data collection for a year wore me out.
I wanted to believe that my meticulous data tracking would lead to answers from my doctors, a precious “aha” moment that every person with a rare disorder craves. But in the late summer of 2021, I was completely overwhelmed by the test results , the research I found in my COVID support group, and the reality that no doctor has a perfect solution to treat my symptoms.
There were days when I had to make calls to get the first available appointments, do interviews, go to one or two medical appointments and analyze data, in addition to managing my day to day. The doctors kept saying, “We don’t know anything yet” and “We’re going to try this new drug, but we’ll have to monitor it for two or three months.” That, added to the news I covered every day, made me feel like I was drifting deeper and deeper into the dark ocean of illness.
My doctors told me that if I didn’t schedule a break, my body would do it for me. So I took a step back from work and said yes to taking care of myself. I am so lucky to have a supportive employer, family and friends, and the financial means to take time off. Rest is crucial after COVID, but unfortunately the systems in this country don’t support well the mental health and physical health needs of the people who need it most. My leave allowed me to focus on my health and only my health, instead of trying to juggle five things at once.
I realized that as much as I love data collection, it was time to ditch the spreadsheet of my personal symptoms and shift my focus and energy to being kinder to myself.
I traded my spreadsheet for an Apple Watch and spent more time outdoors, focusing on the progress I could make on rides that got a little longer and more challenging each day. This freed up my brain space to think about what I really like to do. I started painting during my leave to continue using my creative side, mainly because I wasn’t writing much. At first, it offered me an escape route on my worst days, but in recent months it has become so much more.
Painting allows me to express myself in a way that reports, writing and data analysis do not. It’s the one space in my life where I don’t have a deadline, a color palette to stick to, or a set routine to follow. My paintings are often of the cotton candy clouds I see on the beach at 7pm. In a space of uncertainty, painting sunsets allows me to have a sense of normalcy and calm. These moments allow me to leave my body for just a minute and focus on the wet paint, the bright pink hues, and return me to sitting on the sand, watching the horizon and ocean melt into one another.
Painting also allows me to find the balance and the resistance to continue helping others. In addition to changing the tracking of my personal data, I have also moved from daily tracking of coronavirus cases to conducting longer interviews with other long-term COVID patients. I am able to empathize with a whole group of young people, like me, who are faced with learning to live with a chronic illness much sooner than they imagined. Although I enjoy doing the interviews, some of them remind me of my early days trying to get the care I needed and leave me wanting to do more to help these people. On those days, painting gives me a place to release the medical trauma people share with me and move on.
And even though my symptoms are easing, I still give myself time to paint, even though I’m not at my worst. There’s nothing like peeling the plastic off a new canvas, squirting acrylic paint onto my palette, and letting the brush glide across it, capturing another sunset.
To read this note in English click here