I learned so much about life, hope, and resilience from nearly dying five times from COVID-19-like cytokine storms and fighting back (with support from my Wharton classmates) against Castleman disease to find a treatment that is saving my life. I detailed these lessons in Chasing My Cure: A Doctor’s Race to Turn Hope into Action, because I knew they were widely applicable and I wanted to share them before I’m gone. But when I started writing Chasing My Cure almost three years ago, I couldn’t have known just how relevant these lessons would be today, in the midst of this pandemic.
We Are All in Overtime
I have considered myself to be living in overtime ever since I had my last rites read to me when I nearly died for the first time. In my book, I related this mindset to my time as a collegiate athlete: “The experience of being in overtime is surprisingly one of intense awareness and scrutiny. And clarity… When there are only a few seconds left on the board, all distractions disappear and the purpose — victory — becomes clear. The present is only the things around you, and overtime is all present.” COVID-19 has made us feel like we’re in overtime and the clock could run out at any moment. Fear is an understandable feeling — fear for ourselves and our loved ones. But let’s use this sense of overtime to focus us on the most important things in life and liberate us to be our best selves.
Think It, Do It
Each of the five times that I’ve laid on my deathbed, I haven’t regretted anything that I’d done; my greatest regrets were things that I had thought of doing but never did. I told myself that if I made it, I’d do everything in my power to make sure my thoughts turned into actions. COVID-19 and the uncertainty of the weeks and months ahead of us has made many of us feel paralyzed. We need to try our best to keep doing. We’re often encouraged to look for silver linings during tough times. But I was inspired by my mom during her battle with cancer to create silver linings. What is something that you can do today to create something positive for you or someone you love?
Humor is Incredibly Powerful
One of the last things that comes to mind when we picture suffering and dying is laughter (and understandably so). When I was dying for the third time battling Castleman disease, my belly was so large due to kidney and liver failure that I was once mistaken for my father’s pregnant wife. “Facing my horrible moments with laughter was just as fundamentally a rejection of Castleman’s dominion over me as anything else I was doing,” I wrote. “Perhaps most important, humor is social. For me and my family, there was never a better way to reset our collective resolve than laughing together.” So keep your eye out for internet memes during COVID-19 and laugh with the people you love!
Turn Hope Into Action
I had hoped that some researcher somewhere would find a treatment or a cure for my diseases so that I could live to see my wedding day. When I relapsed on the only drug in development and learned that there weren’t any promising leads, I realized that hoping for something should be more than casting out a wish to the universe and waiting for it to occur. Hope should inspire action. So I got to work and eventually discovered a drug that is saving my life and others. Today marks 76.23 months since my last relapse — I won’t round up to 77, because I may be in the ICU tomorrow. I hope that is not the case, but I don’t stop at hoping. We are all praying for a positive outcome with COVID-19. Let’s make sure we’re taking concrete actions each day to make sure that we are staying safe and protecting those we love — like my wife Caitlin and our daughter Amelia.
It Takes an Army
If I had tried to chase my cure on my own, I would have never made the progress I achieved with a team. Fortunately, I had the most amazing family, friends, Wharton classmates, and colleagues working beside me. Though we are all socially distancing, turn to those that you love (via Zoom) and your colleagues for support with whatever challenges you’re facing because none of us can do this alone.
As a physician-scientist who has successfully identified novel treatments and is alive thanks to one of these drugs, I am hopeful that one of the 1500 drugs already FDA approved for other diseases could be an effective treatment for COVID-19. And I recently turned my hope into action by joining the fight. Click here or watch the video below for more information about our work to combat coronavirus.
David Fajgenbaum M13 WG15 is a physician-scientist, disease hunter, and the author of Chasing My Cure: A Doctor’s Race to Turn Hope into Action, which was named one of the best nonfiction books of 2019 by the Next Big Idea Club. Visit his website, read Wharton Magazine’s profile of Dr. Fajgenbaum and his incredible journey, and listen to his interview on NPR’s “Fresh Air.”