The Shape of Things

My dad was diagnosed with MS when I was eight. My parents sat me and my sister down two years later and broke the news. I was a savvy 10 year old but the disease meant nothing to me. I went back to my fifth grade life.

Over the next few years, I struggled with my dad’s illness. Not because it was hard seeing my father’s physical ability waiver but because he was identifiably different. He had a cane and a license plate with one of those wheelchair logos. It might have been hanging off a snazzy Audi but it flagged him as unique in a not so publicly welcomed way. No one made fun of me or of him but I felt different.

Classmates would spend winters skiing with their dads. I spent mine helping my mon shovel the driveway and offering an arm to assist my wobbling dad navigate snowy sidewalks. When I got my license, I stepped in as the car-parker. Drop my dad at the curb and swing the car around to a nearby space. I hated when people, complete strangers, would awkwardly extend a hand. They’d hold the door open and I’d sprint through the parking lot to swap places and halt others from taking notice. If I let others help with the burden, that meant others were able to see the disease.

When I left home for college, a transition occurred. I no longer cared what people thought. My dad’s illness was as unchangeable as the freckle permanently dotting the upper corner of my right eye. It just is. I didn’t care that he called the dean at Smith to personally request reserved seats at my graduation. I didn’t care that he couldn’t make a trip up the stairs to any of my dorm rooms to see where or how I lived. He showed up the best he could. At least he was there, I’d say.

My dad’s been sick for the better part of my life now. I don’t know him any other way than dependent on me to fetch his lunch, to carry his briefcase out to the car, to load and unload the scooter he uses when his legs are unable to carry his body more than a few yards. He maintains a great sense of humor, finding laughter where others might only see sadness. He even says that of all the diseases he could have landed in the Russian Roulette of health, he’d take his over any other.

So my family made adjustments. Now we anticipate my dad’s needs without having to think. It’s like breathing or blinking. You don’t need any trigger, you just do it. My family travels according to the accommodations for my dad. We celebrate special occasions at restaurants that are truly accessible. It’s all so routine.

I’m starting to notice that my friends are catching up to me in the world of parents with deteriorating health. One friend’s dad had major heart problems, forcing an early retirement amongst other life changes. Another friend’s dad has an inoperable brain tumor. It's benign in the sense it isn’t cancer but it's pressing up against the brain stem and causing some serious problems.

It’s awkward listening to my peers struggle with something I resolved a long time ago. I’ve acclimated to the clusterfuck unexpectedly knotting up the ideal life whereas they’re still attempting to undo it, too involved to relent and realize there isn’t anything that can repair the problem.

I try to relay my experiences, acting as proof that you can come out the other end even when it seems impossible. There are surely residual characteristics I’ve adopted as a result of my dad being sick. I’m always falling into the role of caretaker when dating and I’m overly independent, making it difficult for me to ever ask for help. Though I haven’t personally lived with a debilitating disease eating away at my own body, MS has shaped me into the person I am; a caring and stubbornly self reliant person. I’m not sure who I’d be if I had grown up with two healthy parents. Not that I think about this. Ever. I wouldn't want to be any other way.