by Toni Popkin
April 2020. That was about a year ago when I was diagnosed with COVID-19. Little did I know what a roller-coaster, foggy ride I’d have. Little did I know how similar it would feel to experiencing my Climb following my TBIs.
I started a diary 35 days after my diagnosis. My intention was to post my “Recovery” writing online. In writing this, I went back to read the entries I had written – all 13 of them! So much for my initial idea of being consistent in documenting my Climb.
As anyone who has had a Traumatic Brain Injury knows, it’s not always possible to be consistent. Brain fog and fatigue are two of the many reasons for this. I found this theme running through all my entries.
Let’s go back to the beginning. I wasn’t hospitalized when first diagnosed with COVID. I was and am very fortunate to have a wonderful team of doctors who believe COVID can cause multiple issues in our body. They don’t downplay what has been happening nor brush it off as I’ve sadly heard other Long Haulers have experienced.
In fact, I had quite the opposite experience. I received daily (seven days a week) phone calls to check on me for any changes in my symptoms, my vital signs, and my overall well-being for the first month.
I had a wonderful support group of friends who made sure I had food and meds, as well as made sure I received phone calls and cards. Bud, my service dog, got the needed care I couldn’t give him. These friends understood I very much appreciated all of it, even if I was too tired to reply right away.
I encountered many surprises along this bumpy roller coaster ride in addition to the fatigue and brain fog.
When I was young, I had a few medical conditions that have been well controlled for many, many years. One is asthma. I had gone from frequent trips to urgent care and being on multiple inhalers and a nebulizer in my youth to going for about 20 years of almost never needing to use an inhaler. I didn’t even have one that wasn’t expired. Suddenly in the middle of last summer, I found I started having more and more asthma attacks with no idea why. My doctor didn’t seem surprised. The suspected explanation: COVID, which is an inflammatory virus and attacks vulnerable organs that have been inflamed in the past.
During the fall of 2020, I was hospitalized three times for double pneumonia as a result of the damage COVID caused. It had to be one of the scariest periods of my Climb. Alone, without Bud for the first time, no visitors allowed, and, as I later found out, in guarded condition in a hospital I had been to before, but looked very different due to COVID, was awful. I found myself in tears more times than I can count as nurses, respiratory therapists, aides, and doctors came in wearing protective gear that looked scary to me and looked very uncomfortable to spend all day wearing.
I still don’t know if the respiratory damage from COVID is permanent.
The asthma is only one of several suddenly uncontrolled medical issues that had been well controlled for years.
I was also, like having my TBIs, surprised every time something new popped up. With my TBIs, I’d be surprised whenever I suddenly realized I could no longer do something.
Anger. That was another theme I found running through my diary. I felt anger at people who did not take the virus seriously, those who refused to wear a mask and those who believed as soon as you are no longer contagious, you are OK. I also felt anger at the misleading messaging coming from our elected leaders. Overall, I felt anger that I have one more very real invisible disability severely impacting my life through no fault of my own.
I have a piece of artwork I made on my wall. It reads “Remember What’s Going Right.”
Some days I still find I’m in such a fog, I look at an email or Facebook post and realize I’m taking in nothing I’m seeing. Some days Bud very persistently stares at me if I get out of bed for more than 10 minutes telling me, “Get back to bed. You’re too exhausted to safely do anything.” Some days it’s mid-afternoon and I realize I have not yet eaten.
On all of those days, I have to look at my sign and remind myself I’m still alive. I have a great team of friends and professionals who believe and support me and the bumps on this roller coaster ride will get smoother. I just don’t know when.
Growing up, I never liked going on roller coasters. I don’t think I’ll give it another try.
Be safe. Wear a mask, not for yourself, but for those around you that you care about. Hope others do the same to protect you and those you love.
Toni, along with her service dog, Bud, live in Virginia, where she advocates and educates about service dogs and about people like herself who have a TBI.