Hi. My name is Shane Burcaw.
I'm 23 years old, and I was born with a lovely disease that causes my muscles to waste away as I get older. If you're in the market for a new disease, I highly recommend this one. Here's a picture of me in all my glory:
I've been in a wheelchair since the age of 2, and have relied on other people for pretty much every physical activity since birth – things like showering, shitting, eating, travelling, dressing, and getting into bed, although not in that order.
Most of the time, the people helping me with these activities are my parents, younger brother, friends, and girlfriend. This inevitably leads to a variety of silly, terrible, and awkward interactions. Allow me to share:
1. Wet dreams
Starting off on a great note here, but it's true. Growing up as a teenage boy, the nocturnal emissions were a common event, which meant calling my father to help me get cleaned up. In fact, I became so accustomed to calling my dad after these embarrassing moments that my girlfriend threatened to leave me if I ever accidentally called to him while she and I are "together."
You know that one friend who thinks s/he is a professional racecar driver? This describes the majority of my friends, whom I rely on to drive my accessible van for me. Their reckless disregard for safety does not mesh well with my nonexistent neck muscles, so I've begun wearing a neck brace in the van. The only other option is duct-taping my head to the headrest of my wheelchair.
When you're completely helpless, there's not much you can do in the way of self-defence. My brother learned this at an early age and has been using it to his advantage ever since. If (no, when) I whoop his ass in video games, I can expect to have my wheelchair parked in the corner of a dark room until his anger subsides. All in good fun, of course.
A beautiful side effect of needing constant assistance is the expansion of love and trust I share with my caregivers. Going out for a beer with a friend is so much more than that when I'm relying on him to hold my drink, help me take sips, adjust my arms, help me pee, drive my van etc. The type of trust that must exist between us for a safe, enjoyable night out creates a bond that is truly profound.
When my brother was deciding where to attend university, I heard him expressing to my parents one evening that he felt a desire to stay close to home, so as to be able to help care for me. We reached a family decision that he needed to go out and live his life, but his hesitation gives insight to the kind of love I'm talking about.
Speaking of peeing, it's an interesting task for me. I use a travel urinal that we have named the Pee Jar, an item held in reverence in our household. Only members of the inner circle of caregivers are permitted the honor of laying eyes upon the Pee Jar. You would think, given the great importance we place on the peeing process, that it would be a smooth, error-free procedure. Nope. That stupid jar has been accidently spilled on me more times than I can count.
6. Getting dressed
Girlfriend: What do you want to wear today?
Me: Khakis and that red button-up.
Girlfriend: So my leggings and a T-shirt?
Have you ever brushed someone else's teeth? I urge you to try. I believe you'll find that it's surprisingly simple to unintentionally gag them. Or maybe my family is just doing it on purpose.
Imagine a severely disabled giraffe with zero muscle control. Now imagine that your job is to keep this animal afloat while it attempts to frolic in the deep end of a swimming pool. This is the challenge my friends face when they take me swimming. I cringe thinking about what we must look like to strangers.
Want to read more from the Carers' Issue? Alex Andreou wrote about the realisations that came to him on his 44th birthday, while caring for his mother, who has Alzheimer's. Tom Chivers pulled together 11 charts that show how caring will evolve in the U.K. over the next several years. Alex Taylor-Beal and Stephanie Crack talked about the change in their relationship when Alex became Stephanie's carer after she was diagnosed with multiple sclerosis in her second year of university. Halima Ali collected some of the secrets people caring for loved ones never tell you.