Emil DeAndreis was an up and coming pitching star in college with a contract to play professionally in Europe. And then life threw him a curve ball. He consulted with a doctor regarding frequent elbow pain and was asked “What do you know about Rheumatoid Arthritis?” His first thought? RA was an “old lady” disease that a young man wouldn’t get.
Recently, Emil published a book, Hard to Grip: A Memoir of Youth, Baseball, and Chronic Illness. Below are his thoughts regarding how things have changed since his initial diagnosis and what Emil has learned about chronic illness over the years.
When I was diagnosed, I kept it from mostly everyone.
I didn’t fear I’d be treated different; I knew I’d be treated different. I knew none of my friends knew a thing about the disease, and hell– I didn’t either. And keeping it from them sort of prevented me from having to fully accept the disease myself.
If I were to give advice to a young man recently diagnosed, I would say go about it at your own pace. If it brings comfort to talk to people and get it in the open, then do it, and trust people will respond compassionately; they will. If you don’t want people to know yet, that’s also fine. Take your time, and let your psychology adjust naturally. I will say though, it is important to find something to occupy your mind in this time. Find something to challenge it, distract it. Find something to work toward. For me, when I lost baseball, I picked up writing, and the challenges it provided were not all that different than pitching, and this helped me get through the day-to-day of all the physical limitations of the disease.
I think chronic illness teaches some frustrating, but valuable lessons.
Like when you’re a kid and your parents make you share your favorite toy with that whiny, runny-nosed kid in the corner. It sucks in the moment, but you’re probably better from it. Rheumatoid Arthritis is the adult version of that. You learn you can’t live in excess like you might once have, you learn there are many things you can no longer do, and thus you must find new things that you can do, you learn life moves on with or without you, you learn drying yourself with a towel can sometimes be excruciating, and thus, you learn to appreciate small things, like mornings when you can towel off without pain, you learn people are vulnerable, and have weaknesses, and invisible struggles, and you become a more empathetic person. For me, indeed, this is not necessarily a bad thing.
I don’t live in fear of my disease.
I can’t help but wonder how this disease will mutate over time. The disease is such a phenomenon–your body turning against itself–that you can’t help but be in constant wonder. I don’t live in fear though. All things considered, I’ve had a good experience with the meds since getting the disease. I have no reason to believe (yet, at least) that the disease could ever get to a point that the meds wouldn’t be able to weather the storm.
As a high school baseball coach, I try to put myself in my players’ shoes.
I do not try to awaken them to the dreary, far-fetched possibility that they’ll end up disabled. I try to put myself in their shoes; a coach tells them to be grateful for the sprints I’m making them run. That rhetoric wouldn’t fly with me as a teenager and I don’t think it would with my guys. What that would sound like to me is a bitter man taking out his own struggles on some kids. But, I do stress the importance of loving, and respecting the game of baseball. Because for all of them, healthy or not, there will eventually come a time that they cannot play the game anymore. My strategy to get them to love the game is not to warn them that some day it will be ripped from them when they least expect it; I merely try to have fun with them, and make each day at the yard a good day.
Rheumatoid Arthritis isn’t much different than anything else.
I think writing the book, and re-living all those different chapters of denial and acclimation was the perfect process of coming to terms with the disease. There is some comfort in the complete nonsensical, whimsical nature of autoimmune conditions. They can’t be explained, they have no cause, they have no cure. In that sense, there’s less to dwell on. The end of my book deals with how my players sometimes ask me “Coach, what’s it like to not play baseball anymore?” And my response, and the final lines of the book: “It’s like a disease you learn to live with.” Meaning–life gives us all things we weren’t ready for, makes us say goodbye to things before we’re ready. So, in that regard, RA isn’t much different than anything else; at least that’s how I try to see it.
I hoped telling my story would entertain and inform people.
Writing the book, I worried people would act outwardly guilty. I dreaded the “I had no idea’s.” But the reactions have been so genuine. There’s been minimal sympathy, which is a sign that people know me very well. People have said how the book had them cracking up, how they picked it up and never put it down until it was done, how they cried. This is a testament to my writing, and less my tragic story. I’m very, very grateful for this. I did not write this to make people feel bad for me. I wrote this to tell an interesting story that might entertain and inform people, and the responses thus far have been reassuring.