I know that I’ve lived with my disability for more than fifty years now, so one would think I would be used to my circumstances. For the most part, that is true. I would be the first to tell you that it takes two transfers to get me in and out of bed. One to go from wheelchair to bed and then a different type to go from sitting to lying down. And these days, it is par for the course that someone else helps me in and out of the shower and that someone else helps me to get dressed and undressed. But there are day to day things in the course of navigating my disability that I don’t think I will ever get used to.
I don’t drive. I tried to learn the first time when I was 17. I tried again when I was in college and for the final time when I was in my early 30s. It never worked. One of the ways that cerebral palsy affects me is that it messes with my eyes. They don’t track together. It’s not a big deal when I am wheeling down the hallway of a building. It’s a much bigger deal when I must stay in my lane of traffic. I still remember the feeling when the director of the adapted driving program of a rehab hospital told me that she didn’t think it would work out. The weight of a million lost opportunities crashed into my heart all at once. I never completely got over it.
I tried public transportation. In fact, in the years that I had a 9 to 5 job, that is how I got back and forth to work. That is even how I got around to various appointments in my workday. Then a few years after that arrangement started, there was an accident. The driver of the van didn’t strap my wheelchair in correctly for the ride home from work, so when he hit the brakes along the way, I flew across the bus. I ended up with a permanent soft-tissue injury in my back. Even though those events happened many years ago, I still am wary of public transportation. Trauma affects people in all kinds of different ways. Pretty much from that day forward, I have exclusively had caregivers and friends give me rides.
Sometimes it isn’t that big of a deal. When I have a full team of caregivers, I can let everyone know at a scheduling meeting the appointments that I have in a given week and we just work out the rides within the group. The thing is, most of the time I am short-handed. I have known for many years that the role of being my caregiver is a temporary thing for most people. And it should be. Most of the people who apply for this job are students who want some experience to put on their resume. Once they get it for a semester or so, they move on to bigger and better things.
That creates situations like the one I am in now. I have one caregiver who is hanging in there. (Thanks, Matt!) and another one who works a few hours per week. I also have had several potential caregivers cancel their interviews at the last minute and recently have put lots of effort into finding other people who might be interested in the position.
Matt is here as much as he can be and friends of mine from my church are graciously helping out. And I sincerely appreciate all of that. At the same time, I still wish I could drive. My life would be so much less complicated if there was a way for me to get myself from point A to point B. Not only for the various appointments that I have, but I would love to hop in the car and go to Walmart on the same day that I run out of laundry detergent or just “make it happen” when I want to meet some friends downtown for dinner or I have a hankering for my favorite ice cream.
Uber drivers cannot touch me due to liability issues and these days it is rare that I can into or out of a vehicle completely be myself.
Lately, several people have told me that driverless cars will be available in a few years and that if Medicaid expansion ever happens in Kansas then caregivers will be offered health insurance as part of their job. That should make a few caregivers stick with me a little longer. But all those things are coming, they are not available to me at this point.
For now, I tell myself that it is okay to be frustrated with this situation in my life. Being so dependent can truly suck sometimes. And it’s okay that on some days my lack of independence drives me crazy.