Spoiler alert: This column contains stories from the book “Strangers Assume My Girlfriend Is My Nurse,” by Shane Burcaw.
It was during one of my late night YouTube browsing sessions when I happened upon a video about an interabled couple whose names are Shane and Hannah. I was intrigued, seeing as how I am in an interabled relationship of my own. After watching the video, I began to binge watch their channel, Squirmy and Grubs. I learned that the boyfriend, Shane Burcaw, has spinal muscular atrophy (SMA). Now, after reading his most recent book, I know more about his life story and how his disease has affected him.
In “Strangers Assume My Girlfriend Is My Nurse,” Shane talks about the many embarrassing and awkward moments brought on by his disabilities. The sarcasm and dark humor that is the norm on his YouTube channel is not lost in this autobiography. In fact, it could be considered one of the book’s main features. Each short story about an awkward experience or embarrassing flashback is met with an equally humorous remark, which he says is his main coping mechanism. When he feels self-conscious about his physical appearance or is in the midst of an unpleasant situation, humor is his saving grace.
You don’t have to use a wheelchair to enjoy this book. I guarantee you’ll find yourself laughing out loud when Shane cracks a joke, and cringing at rude remarks by strangers. Everyone, whether disabled or not, will be able to relate in one way or another while glimpsing what life is like from the perspective of a person who is disabled. There were moments while I was reading this book that I felt as if I were reading my own words.
One of Shane’s stories in particular, “Road Rage and Rag Dolls,” hit home for me. In this short story, he explains that because of his weak muscles he is unable to support himself, making it easy to be jostled during car rides. So, he must make sure the driver avoids putting too much pressure on the gas pedal. This has caused other motorists to exhibit clear signs of road rage. I, too, find it hard to travel in cars because of my lack of strength. I often feel like a fish in a bowl when my driver, be it my dad or my boyfriend, takes a turn too fast.
I can also relate to his stories about being prayed for. More than a few times I have been prayed over by someone at church who winds up asking God for my healing or that I be freed from sadness. It is hard for people to grasp the concept that having an illness doesn’t mean you’re suffering.
Although we shared some things in common, the challenges I experience due to my disease are very different from Shane’s. My disease cannot be seen. This tends to bring about a completely different reaction from outsiders. Instead of not taking me seriously because of my physical appearance, people sometimes assume I’m faking my illness. Thanks to this book, I got to look at life from the point of view of someone with a different kind of disability than mine.
I am not going to say Shane is an inspiration because that would make this column “inspiration porn.” Instead, I will commend him for using his story to spread awareness while also making people laugh. His efforts to make a difference in the muscular dystrophy community are also commendable. I look forward to seeing what is in store for him as he and Hannah prepare for married life together. I will continue to follow their YouTube channel and can’t wait to read Shane’s other books.
Note: Muscular Dystrophy News 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 another 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 Muscular Dystrophy News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to muscular dystrophy.