This June, Major League Baseball (MLB) is commemorating legendary Yankee’s first baseman Lou Gehrig with a day in his honor, for now, the third year in a row. This month is also meant to raise awareness for amyotrophic lateral sclerosis (ALS) – the rare neurological disease that often bares his name since he passed away from it on June 2, 1941. Shortly after his diagnosis, on July 4, 1939, he delivered a farewell speech at Yankee Stadium most synonymous with the line, “Today I consider myself the luckiest man on the face of the earth.”
I have Duchenne muscular dystrophy (DMD) which similar to ALS has probably the most significant impact on the muscles. I’m fond of the “luckiest man” speech because it reminds me of my own perspective on my condition. I interpret his being lucky as his gratefulness for doing a truly amazing thing with his life by being an all-time great baseball player.
Read about comorbidities with DMD
At my recent bi-annual appointment with the medical specialists I see, there was something that the palliative care provider said that stuck with me. For the past few visits, I have been discussing with them decisions I’d want to be made on my behalf in the case of medical emergencies that can arise from DMD-related complications. This, of course, brings up situations where my mortality would likely be at stake, and that can be quite overwhelming to contemplate. They told me that a way to get closer to expressing my wishes could be to think about what qualities of my life have the most value to me. These are the things that make me feel lucky.
I feel lucky to have my cognitive abilities. Earning my bachelor’s degree is one of the most significant achievements of my life. There was a college instructor I hope is reading this who I believe helped me reach some heights I probably felt were unattainable at times. Being able to write stories like this that could make a difference in someone’s life gives me purpose. I’ve been able to interview some pretty cool people too.
I feel lucky to have what I consider a solid network of supporters in my life. There are a few friends who I can count on to talk to me at a moment’s notice. Even the ones I see or hear from less often have had my back I’ve noticed. I’m thankful to have family that goes above and beyond to support and care for me. Caregiving can certainly be one of the most stressful aspects of living with DMD, and I applaud my parents for doing this to the best of their ability.
I feel lucky to have hobbies that I can still enjoy. This includes watching Sunday sports on television with my dad. Being able to simply play video games at a somewhat high level brings me joy. Keeping up with the latest tv shows and movies gets me through the week.
I feel lucky to have the enjoyment of eating and drinking. For someone with DMD, this can be difficult due to issues swallowing, and it basically is the equivalent of a workout sometimes due to fatigue. Just a warm, comforting cup of coffee in the morning can suffice. A weekend pizza can also become a highlight of my week.
I feel lucky to be here today. All of us are here for a limited time on this earth, and I’m grateful to have been able to live life to the best of my ability despite the circumstances I find myself in. I’ve gotten a “tough break,” as Gehrig says in his speech, but I’m still looking forward to doing a lot with my life.