The Realities of Wheelchair Life

As you all know, I haven't really talked about my life and disability. So to change that and open the lines of communication a little further, I thought I'd start off by telling everyone what life is like in a wheelchair, the struggles, the fun stuff, and everything in between. I've said this a few times before but here it is again. I have a disability called Cerebral Palsy. 1 in 323 kids have it per year in the U.S. which gives it the title of the most common motor disability in childhood. It has affected my motor skills and obviously, my ability to walk. Due to this one microscopic detail, I've had been fitted for about five wheelchairs. In the beginning, someone else was always driving until my fourth one came along. This one was my first power chair and the one I have right now. Fun fact: Number five is going to be here in 10 days when I'm writing this!
Now let me be real with you. You don't just get in the chair and magically know how to run it. I think it took about 3-6 months before I felt truly comfortable and about a year before I was confident in my abilities. I learned very quickly that I had to be very diligent and aware of what was happening around me, especially in giant crowded areas like mails, fairs, movie theaters, parks, etc. You know, people are trying to get from place to place very fast in those situations and they don't necessarily like to pay attention so if I’m not watching, there isn't any way that I’m going to get through the throngs of people. My tip for you: If you see someone in a wheelchair, or walker, or crutches, or whatever it may be, step out of the way or maybe help to clear a small path. Trust me, that will make a world of difference in that person's life. That's one group. The ones that don't watch/pay attention. Then of course you've got group two. Your starers. I totally understand when little kids do it since they've never really seen a person in a wheelchair but when it's a grown adult or kid? I mean, come on! I'm fairly certain that I'm not the first person you've seen using one and I probably won't be the last. Goodness! They look like they've seen an alien or a ghost. Sorry to burst your bubble! Just a regular human here! Now I kind of want to scream that to freak people out. I'm putting that on my bucket list. Those groups of people are the most common. Except for the occasional, "Can I pray for you and/or your healing?" or my personal favorite, "I've got a doctor you should see!" First of all, I don't need to be prayed for because I'm perfectly fine. Don't treat it like an abnormality. Second of all, I've got great doctors that have done great things to put me where I am today and there are even things that doctors can't fix. So thank you but no thank you. What I’m trying to say in simple form is that obnoxious humans are the worst part but let me tell you. Finding parking is almost more annoying.
First of all, it’s very nice parking. Right up front. There's a cutout in the curb if needed. All is well. Except for a few things. A.) The person using the spot isn't actually handicapped and their using a relative's parking sticker (cause you need one to even be allowed to park there in the first place) or they kept one they had from when they sprained their ankle or something. B.) No one's in the accessible spot but someone's parked so horrendously you can't even get in the spot. Like, I don't know if it's just a really, really old person, or if they forgot how to drive and park, or they never learned how but I have seen some odd parking positions. There's those people who pull into the spot and don't back out and go back in to be between the lines. Then there's the ones that park crookedly! Don't ask me how because I honestly don't know how. In the end, either parking can be easy or it can be a really crappy time. Here's a little parking lot etiquette for your future knowledge. There are actually three different types of parking spaces. The basic spot where everyone can go. The handicapped spots for people who have handicapped parking signs that hang from their car mirrors or handicapped stickers on their license plates. The van accessible spots which are still for people with handicapped signs but it’s a little more advanced. You've all probably seen the no parking lines next to the accessible van spots and most likely thought nothing of it. Insider tip: they’re not there only for show. The lined spot is actually for a van that has a ramp that comes out of it. This is the spot that we have to use because we have a van outfitted with a ramp. So I ask, if you or anyone you know takes advantage of these spots to please stop because people like me really do need them. Ending this spiel on a positive note, a nice part is when you don't have to worry about getting tired when you're out and about all day long or wearing shoes. Although, I do still have to wear shoes when I go out to eat, or go shopping, or go to a movie. Society kind of gets crazy about shoes but we're not going to dwell on that. PS: I never wear shoes when I go for walks or into the park for stuff like Riverbend Rally. So ha society!
However, I'd say something that I've really had to get used to is all the pain. Here's the list of bad spots: My neck, shoulders, lower back, mid back, lower back, pelvis, hips, and occasionally my knees and lower legs because sitting all day really does a number on you. Right now I wake up between 9 and 10 am and I don't go to bed until 10 or 10:30pm and that's not even taking into consideration if we go somewhere. So right there a “normal” schedule is roughly 12-13.5 hours sitting all day. The school year is worse. I wake up on the weekdays at roughly 7am and don't go to bed until between 9 and 10pm which adds up to about 14-15 hours of more constant sitting. What’s the silver lining? I have been able to figure out ways to relieve the pain a little throughout much trial and error. I go to the chiropractor every 1-3 weeks for adjustments and acupuncture (the acupuncture does what my Botox did and loosens my stiff muscles but doesn’t make them degenerate), I get massages once a month which are wonderful, and between all that is a lot of ibuprofen.
​In the end, there’s a lot of stuff that comes with my life. Some things are really annoying/frustrating and other stuff I can’t help but laugh at. Remember, there’s so much in life to worry about so don’t let the small things get to you. Trust me. Totally not worth it.
xoxo-Caroline