How Long COVID Has Changed My Life Forever

I think of myself as a highly efficient, productive, and philanthropic person. I’m a scientist, a cancer researcher, the CEO of my company EasyKale (a superfood powder), a board member at the Boys & Girls Club of America and the Mississippi Food Network, and a co-founder of the Draw A Smile Foundation, which feeds the homeless every week through our R U Hungry program. I’m constantly on the go and always striving to help others. But what many people don’t know is that since the spring of 2020, I’ve been dealing with debilitating symptoms caused by Long COVID. And while I may not show it when I’m out and about, I wouldn’t be able to do half of the things I’m doing if it weren’t for the help I get from the people who are close to me.

At the start of the pandemic, I jumped into action in my community of Jackson, Mississippi. The food banks were overwhelmed with people who were in grave need of food, and I worked as hard as I could distributing food. But at the end of April 2020, I had to stop abruptly because I needed emergency surgery to remove two benign tumors in my abdomen that were suddenly causing intense pain. Still, after about a week in the hospital, I was discharged and I assumed I could return to my busy life.

Thank goodness my sister came to visit me around that time because soon after I got home from the hospital, she checked on me while I was sleeping and saw that my lips had turned a deadly shade of blue. I shudder to think what would have happened if she hadn’t found me when she did and called 911. I didn’t know it then but I’d gotten COVID-19 during my hospital stay, and by the time I was admitted to a new hospital, I was already severely ill.

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I spent almost a month in the intensive care unit. The doctors later told me that there were several times they thought I wouldn’t survive. But they didn’t give up on me and tried three different experimental treatments to keep me alive. Thankfully, I got better and was able to go home, but it quickly became clear that I was not fully recovered.

What Long COVID is like for me

For months it was painful to breathe, almost as if I was inhaling fire with each breath. I ended up going in and out of the hospital with what turned out to be fluid in my lungs. I also began to experience crippling pain all over my body, which felt (and still feels) like being stung by wasps for hours. After about nine months, doctors were able to clear the fluid in my lungs but other symptoms developed and still persist. At times, my legs, feet, and hands will spontaneously swell up and then later correct themselves, which baffles my doctors. Other times, it feels like someone is continually yelling in my ear. And often, out of nowhere, it feels like all my nerves are firing off at the exact same time, which is incredibly painful and causes my body to twitch involuntarily. My only recourse is to get into bed and lie as still as possible in the fetal position for as long as it lasts, which is usually two to three hours. I’ve heard that there may be a connection between how COVID affects me and the fact that I have autism, though doctors don’t know why yet.

Now I give and receive help

I have at least one severe pain episode each day that causes me to stop everything I’m doing. But the pain is always there to some degree, so I’ve learned to lean on others. My biggest support is my wonderful wife, who I met after I got COVID. She sees me at my worst and helps me get through my days. People sometimes ask me how I do it all. And I tell them that it’s not just me. When you see me working, you’re seeing the representation of an entire team including my assistant, my family, and my wife. They are the ones who do the extra walking at conferences that I’m not able to do. And they are the ones who pick up the slack when I’m in too much pain to function. My wife even flies with me when I need to travel for business, which really helps me keep up.

I’m also lucky that I work for myself and I’m able to adapt my schedule when my symptoms get in the way. I work from my bed often, I shut off my Zoom camera when the pain gets too intense during a meeting, and I ask for help when I need it.

The real trick that keeps me going, though, is to focus on others, as I’ve done throughout my life. If I were to focus on myself too much or dwell on my condition, my fears would become paralyzing and I wouldn’t get anything done. So COVID may have knocked me off my feet, but with help, I keep on trucking.

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