My local Center for Independent Living had a couple of focus groups that I was invited to participate in over the last few days. Those gatherings are kind of my thing because I love to give opinions and describe my experiences related to disability issues. The first one was about accessible parking and the second one was a discussion about ways to write effective advocacy letters. It would be no surprise to anyone who knows me even remotely that I wanted to participate. The thing out of the ordinary is that I got myself to the center alone, in my power chair.
The building is only a few blocks away from my house, so people might be wondering why this is such a big deal to me. There are a number of reasons. And although I am not at all sure I can explain them in a way that will be understood, but I will certainly give it a shot.
First is that I don’t really have any sense of direction at all. Most people laugh when I say that and tell me in one form or another that they do not have a great one either. But I could not be more serious. Because I have had my disability since I was born, I never had a bike. I never had to find my own way home after school. I never drove a car by myself. Therefore, I am not at all sure those particular pathways ever developed in my brain. I can memorize addresses like a champ to tell people where to go in terms of picking up medication for me or running a particular errand, but if I ever have to explain to someone where some landmark is in relation to somewhere else, I am as lost as Dora the Explorer without her backpack. A paper bag would be in trouble if I had to find my own way out.
Secondly, adventures aren’t always fun for me. Never have liked roller coasters. Too many unexpected twists and turns for me. I like to have a familiar routine and to know what is coming next. When I do something new, I usually have somebody with me as sort of a safety net in case anything goes wrong. Going it alone last week had me a little rattled. Not going to lie about that.
I will say that I had “walked” the route a few times in my power chair with one of my caregivers. We even explored a few different ways to get to the building where I was going so that I could go on the route that has the widest paths and the fewest cracks in the sidewalk. Being safe from the time I leave my front door to the minute I get where I was going was one of the reasons for my fear. And let’s face it, anything new is uncomfortable, at least until you have done it several times.
The plan was to leave my house well before the start of the meeting. My next step was to text one of my caregivers the route that I would be taking from my door to my destination. I felt safer that way. If my chair happened to break down or I got stuck somewhere and needed assistance, she would have known exactly where to find me quickly.
There are a few incentives for me to have broken out of my comfort zone in this manner. If all went well with the groups I was going to participate in, I would get $50 each time for my involvement. The flyer also promised free pizza. Now $100 and free pizza is enough of a draw to get me to do almost anything legal. but I was hoping something else would happen on this journey as well.
If I was successful in getting where I was going by myself, then I would know that I have accomplished something that I haven’t done before. I would have one less thing in my world to be scared of, and that means that eventually I can take my service dog for walks on bike trails all over the city or find routes to my favorite restaurants downtown some random afternoon when I get a wild hair to go out for lunch when no caregiver is scheduled. It means there is one less thing on the list of “What Lorraine Can’t Do by Herself” and I have it in my head that list needs to be as short as possible.
I knew that I had done everything I can to set myself up for success on my adventure before I started out. At last, it was time for the rubber to meet the road. (Pardon the pun.) Was I nervous? Yes indeed. But I was also excited and ready to see if I could meet this challenge and overcome it. Because there is a whole new world for me to see on my own and I need to explore it on my terms.
There were only a few times I was terrified. Some of the curb cuts on the accessible sidewalks were incredibly steep, and it was scary to go over them with any kind of speed. To be totally honest, I said prayers for protection the whole time and tried to quickly dismiss the pictures in my head of my chair getting out of control and going off course into oncoming traffic. Turns out that the bumps aren’t nearly so scary if you focus on what’s beyond them to where you are going instead of the bump itself. Not to be too philosophical, but that is kind of a metaphor for life as well, don’t you think?
To cut to the chase, I successfully made the trip to the independent living center on my own twice in a few days. That is totally something to celebrate. My world just got bigger, my list of “cant’s” just got smaller.
And I learned that sometimes you have to start scared to succeed.