The disability world barely touched my life before I sustained a spinal cord injury at 17. Up until then the only wheelchair users I came across were a lady with cerebral palsy, who very sporadically showed up for Sunday morning church services (as I mentioned in this post) and a middle/high school classmate who has Spina Bifida. Therefore, I have no real frame of reference as to what the average able-bodied person may think about the ins and outs of the lifestyles of wheelchair-users, specifically those with SCI. My assumption is that the level of consideration doesn’t venture far beyond noticing our wheelchairs and observing that we can’t walk. But there are a lot more behind the scenes things with this lifestyle that make it challenging. To put a twist on one of the most famous superhero lines of all-time, “with significant disabilities comes a high level of lifestyle responsibilities.” Here are a number of hidden responsibilities that go hand in hand with my daily SCI lifestyle.
Medication: Almost every day I take up to a dozen medications that are all SCI related (e.g. for muscle spasms and osteoporosis). It has gotten to the point where I go to the Target pharmacy so often that most of the employees know me by name—which I find equal parts convenient and disconcerting. Hands down the most important medications I take are for muscle spasms, which I take multiple times a day. So I always seem to have my pill case with me wherever I go. Always having to account for all those pills can be annoying but absolutely necessary. And there is no such thing as “no pills day.”
Body maintenance: Most people with SCI have no bodily sensitivity below their particular level of injury, so we often don’t notice things like bruises, scratches, etc. because we can’t feel them when they occur. If certain blemishes go unnoticed for too long they can lead to skin breakdowns (e.g. open sores) that can take weeks, if not months to heal because of the lack of regular blood circulation in the lower extremities. This past October a scab that formed on the outside of my right foot (from new shoes I think) somehow went unnoticed by both me and the people who help me out with my personal cares (grr especially in the case of the latter considering they put my socks and shoes on every day), and it quickly led to cellulitis and a blood clot. It took until a few weeks ago for the scab and swelling in my foot to finally heal enough for me to go back to wearing regular shoes all day again. Doing daily bodily skin checks is a requisite with this lifestyle to prevent that kind of thing. I also need to be extra careful every day so I don’t cause myself any bodily harm.
Managing PCAs: From the hiring process to overseeing the day to day execution of my personal care duties, there is a decent amount of responsibility in managing PCAs. When a new PCA starts, or I have a fill-in, there is a lot of extra explanation, training, and monitoring involved so I get ready for the day correctly. By and large once I’ve been working with someone for a while things run like a well-oiled machine. But that doesn’t mean that certain things don’t fall through the cracks. For example, they will plug in my wheelchair to the charger but not turn it on. One of my long-time PCAs hardly ever told me when I was low on either household or personal care supplies, which often put me in tough spots if they ran out. So having to constantly monitor them and make sure my life can stay in order, as far as their assistance goes, can be taxing.
Adaptive things: When I go out and about I need to bring along adaptive things that will help me complete tasks more easily. For example, when I know that I will need to fill out forms or sign things (e.g. credit card slips) I need to bring my adaptive writing tool. In most cases it’s not a big deal but it’s just one more thing that I need.
Equipment: By equipment, I’m mostly talking about my wheelchairs because they are the most important pieces of equipment in my life. Therefore, I always need to be mindful that they are taken care of, to not bang into things in ways that may cause damage, etc. I also need to make sure they are fully charged and have enough juice for a full day’s use. The other most important equipment in my life—my wheelchair accessible van—I make sure to keep my van’s ramp serviced regularly so that it doesn’t break down and I get stuck inside or out of it.
Fiber intake: A few years ago I made the switch to a high fiber diet. Sure it meant eating healthier foods, being that my metabolism slowed way down once I hit my late 20s, but I made the switch primarily to have a more successful bowel program—the darkest secret about the SCI lifestyle that nobody ever wants to talk about because we are all super self-conscious and embarrassed about it. In fact, given the wide audience of this blog, just mentioning it now is arguably the bravest thing that I’ve ever shared in almost four years of writing about my SCI experiences. But it is what it is. That said, I’m not going to get into details other than to say that for the better part of ten years I had a lot of issues in that department that ruined my quality of life and switching to a higher fiber diet—an average daily intake of fiber is 25-30 grams—has helped out incrementally. But ingesting that much fiber can be challenging because not a lot of foods have adequate fiber per serving—for example, my favorite snack, Cheez-Its, have less than one gram of fiber per serving. So I have to do a lot of label reading and eat a lot of fruit, multi-grain, and whole wheat foods, as well as fiber supplements in order to hit my daily quota. If I do things like go out to eat at places that I know won’t have high fiber meal options I plan my other meals accordingly to make up for it. It takes a pretty decent commitment.
So those are some of the key daily responsibilities of my SCI lifestyle. But like with any other challenge I face, I ultimately embrace them, adapt, and thrive.