As a sports fanatic and writer, I know the importance of being selfless in a team setting. It’s the ability to focus your attention on others in the pursuit of success. Passing the basketball to someone other than yourself comes to mind. The person who I feel epitomizes selflessness the best in my life would be my father. He pays close attention to the around-the-clock care that my disease – Duchenne muscular dystrophy (DMD) – requires, which often can be in lieu of his own needs.
Words cannot really describe the significance of the role my father plays. My entire day is set in motion by him because he picks me up out of bed over to my wheelchair. He assists me with all aspects of daily hygiene and getting dressed. Just having him as a constant companion to watch sports and late-night TV with is priceless to me.
My dad will drive me wherever I need to go. Look up this year’s Oscar-nominated film “Drive My Car.” Rather than the red sedan featured in the movie, he drives our accessible red Dodge Caravan. When I was getting my undergraduate degree, he’d help me get to every class. Similarly, he gets me to all the interviews I schedule for the contracted assignments I have. Nearly 10 years ago he drove me to the very remote Bristol, Tenn., for a NASCAR race.
The first 7 years of my life were spent in Georgia. My dad worked as an engineer for Boeing. He has since retired from that field, but the technical skills it afforded him have paid off. On one occasion the leg braces I wear every day were starting to rub on my feet too much. To remedy this he used a heat gun to melt down my braces into a better fit. He even designed a tripod that attached to my armrest so I could use a video camera. I think I might get the resourcefulness I have from him.
Sometimes there can be tension with the specialists I see when considering the course of treatment I could take. My dad has been instrumental in advocating on my behalf as a patient and motivating me to do so on my own accord. He has often expressed to providers the discomfort I have during medical procedures and when their care didn’t meet the standards he believed I deserved.
I’ve mentioned before how my fused spine and fragile joints made laying in an MRI machine for a scan of my heart very distressing. My father sensed the burden of anxiety I was bearing over this, which led to him being vocal with my doctors about it. Ultimately this was a precipitating factor in the collective decision that was made for me to do solely echocardiograms for heart imaging.
Another area of contention with my care providers was the amount of responsibility they had in mending cataracts that formed in my eyes from heavy steroid use. Though he and I had many conversations with them over this topic, they left us mostly in the dark. My dad’s argument was that they had an obligation to help with this, especially since the medication they prescribed me was the clear source of the problem.
Read more about DMD therapies
Witnessing my father’s persistence as an advocate helped me emulate this approach more. More often, I’ve expressed to my providers the concerns I have about procedures with email and conversation. There are more frequent instances of me talking to doctors without my parents in the room. I also handle most medication issues through email.
Though I don’t plan to be in running events with my power wheelchair again, the decade I got to do them meant a lot to me. It was my dad who helped me be a part of the sport he loved. He’d run alongside me to make sure I safely maneuvered through the race courses. He even entered me into one of the nation’s largest 10ks – the Peachtree Road Race in Atlanta. Technically I wasn’t even allowed to participate in this race, but I did anyway with my dad’s help.
Ironically my father’s name is Rich. Much of the richness in my life I owe partly to him.