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My mom used to shake me awake in the morning, cook me breakfast, and send me off to school with a packed lunch. She made sure I took all my pills, ate vegetables, and had consistent physical therapy. My dad and some teachers acted as my arms and legs to help me get to places I could not have on my own. All I had to worry about was doing well in school, hanging out with friends, and playing video games.
When I started school at the University of Southern California (USC) and lived on campus, my mom was no longer there to predict my every need. The only way my new living arrangements have worked has been through my ability to gauge needs and ask for help when appropriate. I can still walk and do most of my self-care, but anything requiring normal muscle strength is out of the question: I can’t make my bed, do my laundry, stretch myself every day, cook dinner, or stand up from regular chairs.
In my first two years at USC, I lived with my best friend since kindergarten, Michael Rouleau. I would not have been able to succeed if not for Michael’s support and willingness to help me. There weren’t a lot of people who cared for me in the way he did. During one fire alarm, which thankfully turned out to be a false alarm, he did not hesitate to make sure I got out of the building safely, carrying me down the stairs on his back. Michael is a friend who helps me without question when I need it most.
Throughout my junior and senior years, I’ve lived at a house a 10-minute walk away from campus with 13 other guys. No, it’s not a frat house. Quite the opposite, actually. Most of the people who live here are Christians, and several are part of the campus ministry group Christian Challenge. Each of them has been willing to help me, either by stretching me late at night, helping me shop for groceries, lifting heavy packages for me, or even offering to cook. Without Michael or my housemates, my experience would have been very different at USC. It would have been lonely and I could not have endured.
Read more at: https://musculardystrophynews.com/2019/04/01/asking-help-duchenne-muscular-dystrophy/
