This Rare Disease Day, I’m Grateful for My Friends

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by Kevin Schaefer |

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You know it’s a unique relationship when one friend helps the other use the bathroom. This is the scenario I found myself in a couple weeks ago when my longtime friend Lucas held my urinal for me inside the bathroom of our go-to comic shop. While I normally use an external catheter, I was coming from an aqua therapy appointment, and as such, I still had my bathing suit on. 

Some might find it awkward or intimidating to ask a friend for assistance with things like going to the bathroom or getting dressed. For me, these instances are as commonplace as having friends over to watch movies or swap comic books. While my primary caregiver, Randy, and my parents take care of my essential needs, I inevitably need help throughout the day with physical tasks and care. Thus, I have several faithful companions who have entered my life at various times.

Lucas remains one of my oldest friends. Having grown up with each other in church, we bonded not only over our shared interests but also through rare disease spaces. While I was born with SMA, Lucas was born with congenital heart disease. He underwent a heart transplant in 2012, and while he only vocalizes his experiences with a select group of people, I am among this circle. We often exchange hospital stories, have raw conversations about medical trauma and mental health, and can be honest when we drive each other crazy. 

Kevin and Lucas. (Courtesy of Kevin Schaefer)

Though Lucas is one of the only friends I see in person right now, we’re both eagerly anticipating the end of this pandemic so we can return to movie theaters and comic cons. 

Likewise, Jacob is someone I connected with right away. A fellow nerd and Ravenclaw I met in college, Jacob’s love for sci-fi led to many of our early conversations. Our friendship grew when he became one of my paid assistants during my junior year. Through an independent living organization in North Carolina, I was allotted about 30 hours a week, which was in addition to my home care hours. I used these hours to hire a couple of friends to drive me to and from campus, assist me with meals, and help with other tasks like feeding my service dog.

Kevin, Jacob, and Felicia Day. (Courtesy of Kevin Schaefer)

When we first started working together, we were more casual friends who merely got along well. Then, during car rides, lunches, movies, and hangouts at my house, we formed a brotherhood. We went beyond surface-level talk to discuss relationships, faith, purpose, pain, loss, the universe, and the beloved animated series “Avatar: The Last Airbender.” The latter subject led to our most philosophical conversations. Jacob and I remain close friends today.  

The other person I hired in college was Will, who’s been one of my best friends since sixth grade. We met as dorky adolescents in drama class, thus marking the beginning of our theater journey. Throughout middle and high school, we performed together in shows, bonded during lengthy rehearsals, ate way too much fast food, and made other lifelong friends.

In college, Will’s experience began with tragedy when his mother’s cancer took her, barely a few weeks into our freshman year. I still recall the last time I saw his mom, a wonderful woman who made everyone feel like family. The days that followed her passing were unlike any other experience in my lifetime. I remember the anguish, the silence, and the sheer uncertainty of what was to come. 

Will and Kevin. (Courtesy of Kevin Schaefer)

Will and I have laughed and cried together more times than I can count. Today, he lives on the other side of the country working for a healthcare company. I find it funny that after all these years, even our career paths intertwined. We may not see each other in person these days, but we talk regularly.

Lastly, one of my closest friends today came into my life at just the right time. Rich is years older than me, has more life experiences, and probably would have never met me were it not for a mutual friend from college. While we initially bonded over a shared love for pop culture (duh), we quickly began to have deeper conversations.

From left, Rich and Kevin interview two comic creators at a comic con in 2018. (Courtesy of Kevin Schaefer)

Unlike a lot of people today, Rich isn’t into small talk, social media discourse, or having a bunch of casual acquaintances. He’d much rather invest in a person, learn their story, and invite them for a three-hour podcast. He’s always been fascinated to learn about my disability and willing to help me, and he engages people on an intimate level.

As Rare Disease Day approaches, I’m reminded that being rare means having rare friends. Friends who are imbued with a Samwise Gamgee kind of loyalty and empathy make a world of difference. For me, these companions are essential.

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Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.

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