For most Americans the Fourth of July invokes thoughts of fun, sun, heat, fireworks, cold drinks, grilling with friends and family, etc. But what sometimes gets lost in the mix is that the day commemorates the adoption of the Declaration of Independence in 1776, the nation forming document created by a group of men who cherished their independence from the King of England so much that they declared that they were their own independent states.
By analogy I tend to cherish my personal independence similarly. But when you are a spinal cord injury quadriplegic like me who heavily depends on personal care attendants, accommodations, disability services, and things of that nature to live my daily life then realizing my full independence is elusive. Rather, in my world achieving independence is something that I’ve gained more of bit by bit as the years have gone by, best signified by a carrot perpetually dangling just out of my reach on a stick rather than a flag planted firmly in the ground. I am very independent for a quad, but I always crave to be much more so, and therein lays the rub.
So staying within the spirit of July 4th I thought that I would offer up a few examples of what have been important personally historic steps to me becoming more and more independent as a person with a disability over the past fifteen years since my paralyzing diving accident:
Moving into my new room: At the time of my SCI my bedroom was in our inaccessible basement, so while I was in rehab my parents broke ground on a new, fully accessible addition to our house that would become my new room. While construction continued for about three months after my discharge from rehab I was forced to sleep in my parent’s bedroom. When I could finally move into my room it was awesome to have my own space again which included my bed, bathroom, desk, and private ramped entrance to the garage. It was like an apartment that allowed me to come and go as I pleased. It felt like my independence increased tenfold after I moved in there.
Driving my van: Around April 1997 we got a minivan with a fold out ramp and fitted with hand controls. Not only did that mean that doing very annoying car transfers every time I ventured out were a thing of the past, but I could drive myself wherever I wanted to boot. My van and my wheelchair are by far my primary outlets to the world. Getting my own wheels was the biggest step to increasing my overall independence.
Switching to my power wheelchair: When I started college in 1997 I made the switch to using my power wheelchair full time. I remember feeling really hesitant and conflicted by it because using my power chair made me feel lazy since I was fully capable of wheeling myself around in my manual chair. But as my very awesome physical therapist at Craig Hospital in Denver (an ex-NAVY S.E.A.L.) put it, I would be “kicking my own ass” wheeling myself around campus if I didn’t have a power chair. I look back on that hesitancy now and shake my head because my power chair gives me much more independent access to the world than my manual chair ever could.
My first solo “road trip”: In the fall of 1997 I felt cooped up at home one night and decided to go for a drive. I had no destination in mind; I just got behind the wheel and went. About twenty-five minutes later I showed up at our old lake cabin, where I knew that my dad and our neighbor were sitting by the fire. It didn’t seem like a big deal to me but showing up unexpected like that shocked them because it was the first time that I had done anything on my own like that post-SCI and it ended up leaving a big impact. It signified that between my power chair and my van I had the independence to go wherever I wanted whenever I wanted to.
My first solo shopping mission: Going shopping at the mall is no big deal for me now, but once upon a time I never went shopping without assistance. The first time that I went to the mall by myself to buy my sister a birthday gift. Going into a bookstore, pulling a book off the shelf, paying at the counter, and getting my change and shopping bag back without dropping them was a big deal for me. It meant that I didn’t have to wait to shop until someone could go with me.
Moving to Minneapolis: When I moved to Minneapolis, MN from Eau Claire, WI it not only meant moving to a much bigger city but it meant that I was moving away from home for the first time. I went from a very insulated lifestyle surrounded by family at home to living completely by myself. When I moved into my very own accessible apartment the plan was to get a roommate that was a live-in PCA. When that fell through I decided to give it a go without one, and save for a few hours of PCA assistance every morning I’ve lived alone for seven and a half years now.
The first time I bought milk by myself: This may seem like a strange one but when I lived at home I never had a need to buy milk because there always seemed to be some in the fridge. Even after I moved into my apartment I timed most of my grocery trips around visits home so my mom could help me out, often getting a few gallons of milk at a time so I could stretch out my milk use until the next time I had shopping assistance. Or I would give my PCA money and she would buy it for me. The first time that I went to a grocery store after my law school classes to buy milk on my own felt like a big breakthrough for my independence. It was a gateway purchase that would soon lead to me doing quite a bit of my own grocery shopping without waiting for assistance. Now I’m not sure why buying milk by myself seven years ago was a big deal, but it was at the time.
Taking myself to the emergency room: Within the first month after I moved into my apartment I cut my pinky on a pizza slicer. When I couldn’t get the bleeding to stop I bandaged it as best as I could with my quad hands and drove myself to the emergency room where they gave me four stitches. Nothing makes you feel independent quite like taking yourself to the ER at 10pm in a big city.
So although as long as I am a wheelchair using quad I probably won’t be able to declare my outright independence, but by the same token the key is to keep chipping away and discovering inroads towards that ultimate goal. It’s an ongoing learning process and almost every month I figure out something new that gives me an extra independence boost. Sometimes they’re little things but they provide an opportunity to improve my lifestyle nonetheless. Let independence rule!
What are some of the milestones that you’ve reached on your quest toward independence?
Photo Source: Tony the Misfit