“Hey Google, turn off the bedroom light.”
“OK, turning off the bedroom light.”
As I lay in bed, the lights automatically switched off. I breathed a sigh of relief that I did not have to struggle to get back into my wheelchair to turn them off manually. Lying in bed, I began to think about how strange the world is at this time. On one hand, I had the advantage of commanding Google Home to control my lights and tell me the weather. On the other hand, COVID-19 cases are continuing to rise and millions of Americans and people all over the world have lost their loved ones. Students like me have been stripped of the classic college experience: going out with friends, hanging in the dorms, fun but productive club meetings, and late-night study sessions.
I was home in the Berkshires from March until late August, and when sophomore year started in the Fall I was insistent that I would go back to New York City even though I knew college life would be different from what I experienced before the pandemic. I took my classes on a fully remote basis from my apartment. I was five minutes’ walking distance from the NYU campus but I felt like I was a universe away. Campus felt like a ghost town. People were still out walking, but Greenwich Village was a shell of the pre-COVID neighborhood I had once known.
I could no longer go to the campus library, grab lunch with someone new I had met in a class, or go out with some friends on weekend nights. That new reality is really hard to deal with, but while I may not be able to hang out with friends and meet new people for the time being, I realized that this strange situation has given me the time to learn about myself. I had to fill my time outside the classroom in some other way, as socializing — my favorite activity — pretty much burned out during the pandemic. I became passionate about designing my apartment space to look classy while also being arranged in a way that’s as easy as possible for my wheelchair to navigate. The angle of the lounge chairs and the design of the wall art and pillows were just as important to me as having the bed at the right height to be able to get in and out.
I found myself in my studio apartment five out of seven days a week, completely alone. I had to stay on top of my studies and make sure I remembered to eat three meals a day. I eased the loneliness by becoming a regular at a hip coffee shop across the street where the employees knew me by first name and always struck up a conversation. All the alone time made me think about the ways to make living with a disability a bit easier. I accepted the fact that I need more help than I had originally thought. Once I accepted the help, it was such a freeing experience. I found someone to help me cook meals that were convenient and healthier than grab ‘n go from the dining halls or ordering in on a budget. I learned how to set up Google Home for my lights, and I picked out clothing and furniture that were easiest for me in terms of accessibility.
I felt lonely, but I found comfort in the fact that somehow I was still independent despite having Duchenne and the virus raging through the city and blowing up the traditional college experience. My favorite design touch in the apartment is my collection of scented candles. I cannot get enough of them! My favorite by far is Espresso Bean by Lulu Candles. COVID might have burned out most of my social interactions, but my candles symbolize how the flame inside me and my spirit will not burn out anytime soon!