About a year ago, while sitting around a fire in my backyard, my friends and I compiled a list of the ridiculous obstacles that will need to be overcome if I am ever going to move out of my parents’ house.
It began as a joke, as we added items like “find a highly qualified Butt-Wiping Assistant,” and other silly challenges that I will inevitably face when I live on my own.
But pretty soon, the unsettling reality began to hit me: My disability will greatly inhibit me from living independently. That scares the shit out of me, but that’s okay! Overcoming adversity is what makes life worth living.
My whole life has been a struggle for independence. When I was young, getting my first wheelchair ended the brutal torture of being pushed around in a baby stroller by my parents. Suddenly, I could move! The world was at my fingertips, and yet my two-year-old brain used this new freedom to perform high speed crashes into the walls of my daycare center. I guess I was easily amused.
As I grew and entered grade school, I adamantly protested the administration’s desire to assign me a full time aid. Nothing would make it harder to find friends than an old lady hanging on my shoulder at all times. By asking classmates to help with the physical assistance I needed, I was able to be aid-free from second grade onward.
Middle and high school brought new opportunities for independence. I wanted to stay out late, go places with friends, and get into trouble. My wheelchair complicated these matters, but I found ways to overcome the obstacles by refusing to give up, like the time I decided to drive my chair home from school and almost froze to death on a frigid winter afternoon.
By the time college arrived, I had mastered independence in most aspects of life thanks to a great group of friends and family who were always more than willing to help out. But there was still that nagging voice in the back of my head, urging me to consider life on my own.
The biggest dilemma stopping me from moving out is my nighttime care. I’m basically like a big baby after the sun goes down. Someone needs to help me shower, use the bathroom, brush my teeth, put on my princess pajamas, comb my hair, etc. Next, that person has to put my feeding tube in, which involves sliding a long plastic tube up my nose and into my stomach. Once my helper puts me in bed, the fun has just begun. Since I can’t move even a little bit, I need help when I get uncomfortable at night. This has always been one of the things my amazing father does. Probably 2-3 times a night I’ll call his name, and he wakes up to come help me readjust. For this reason, I will need someone in the house with me at all hours of the night when I move out.
Some of you are probably thinking: Aren’t there nursing agencies and home healthcare programs to do exactly what you need, Idiot Shane? The answer is yes. However, I’ve heard enough horror stories to feel extremely uneasy about this solution. Nurses not showing up, caregivers handling patients with apathy, and other flukes in the system could cause me to be in some very bad positions.
Another natural solution is to live at home until I meet a girl and have a relationship that progresses to the point of moving in together. But that’s an entirely different story for a different time.
The most ideal situation would be to move into a house with some of my closest friends, who could split up the “Shane duties” so that no one person is left with my care. Unfortunately, none of my friends are able to make that happen in their current lives.
So where does this leave me? Give up? Accept that I will live with my parents forever?
Now that I have graduated from college, this is really the first time I’m giving serious thought to the challenge. As you can see, I don’t have a perfect solution, but giving up is the only guaranteed way to assure that I’m stuck here forever.
So for now, I will focus on how much I have to be thankful for. I have incredible, loving parents who devote so much of their lives towards taking care of me. My friends are always more than happy to come lend a hand or pick me up for nights out. I have safety and comfort and happiness.
My dream is that over the next few years I’ll be able to make enough money to allow me to consider more options for moving out. The possibilities are endless, and if I keep my head in the right place, I know I’ll figure it out.
Besides, my dad has spectacular taste in beer, so that makes it a little easier to stay.