10 Years With RA: A Look Back and a Look Aheadby Emil DeAndreis Patient Advocate
Recently, the “10 Year Challenge,” has taken social media by storm. Across the world, people have been posting photos of themselves 10 years ago next to photos of themselves now. A decade can be an interesting amount of time. One minute, it can feel like it passed by in a blink, the next it might feel like it spanned a lifetime.
I did not make a “10 Year Challenge” post. However, seeing everyone else’s photos did remind me that I was diagnosed with rheumatoid arthritis (RA) exactly 10 years ago. I got to thinking about how RA has changed my life, for better and for worse, and how I now look at the future with it.
RA has changed me physically
I can remember when the disease came on me like a tidal wave. My fingers ballooned and throbbed. This became true with more and more hinges of my body. I was on a path to being fully disabled, unable to button my pants or climb stairs. A decade later, thanks to meds, my body has plateaued, for now at least. I can run, I can lift moderate weights, I can swim.
My X-rays show no significant advance of the deterioration in my impacted joints. I take my meds, and I have plenty of physical limitations, but I’ve carved out a lifestyle where I thrive within those limitations. I liken it to a blind dog who has learned where the walls are and knows how to sprint and roll around without getting hurt.
RA has changed me mentally
I can remember certain days and moments in my baseball career, but it’s been so long since I played, I can’t quite remember the feeling. Trying to feel the thrill, the focus, and the rage of competition feels like watching a movie about someone else. And I’ve gotten to be fine with that.
RA has taught me to be OK with a lot of things. In that way, it has humbled me. It has taught me not to be disappointed by little things. My wife, Kendall, was recently on the phone with a friend, remembering a “past me” who had a temper. Who knows if it is simply maturity with time, or the constant rejection that is the life of a writer, but I have noticed that my temper has been broken and tamed, and I am more at peace than I was 10 years ago. I think living with RA has played a certain role in that; there is nothing better than living with a chronic illness to teach you that sometimes you don’t get what you want.
More importantly, 10 years with RA has taught me empathy. I’ve encountered many amazing people with important stories through the RA community, and teaching, and traveling. I’ve learned that everyone has a battle they’re fighting, either visibly or invisibly, and that’s led me to want to tread the world with gentleness and compassion.
RA has changed how I see the future
Parts of this article may sound like I’m coasting into middle age having figured out the world. That’s not true. I worry about and look forward to a lot. I don’t have a kid yet, and I wonder how RA will impact parenthood.
When I am around babies and toddlers, and they want to be picked up and thrown, my wrist and elbow tells me to stop, but the kids say “Again! Again!” I want to play sports with my kid like my dad did with me. I don’t want to be the dad that says: “I’m done, buddy, sorry.” But sometimes, I know I will have to be.
What about when we have to lay our child down ever-so-gently so as not to wake him/her? Even my most athletic friends say this can be an Olympic endeavor. The first thing that comes to mind in these scenarios is: wrist, elbow.
I know RA will be a daily presence during fatherhood, and the rest of my life. I know that just because my condition is managed now, that RA is fickle, and unpredictable, and that one day I may wake up and my meds won’t work anymore.
I choose not to live in fear, but instead to assume that RA will continue to surprise me, and challenge me, and make me stronger. I look forward to the next 10 years, and one day, writing my 20 year challenge.