Sometimes I use a wheelchair. See?
I’m just kidding. Well, I’m just kidding about the motorcycle. Sometimes I really do use a wheelchair. And sometimes I make my mom haul that wheelchair on to the back deck for a photo opportunity. See?
I have dysautonomia and because of this, oftentimes I cannot stand up or walk around for very long without an inappropriately fast heart rate, an abnormal blood pressure and a whole host of very unpleasant symptoms.
If you’re confused or curious and want to know a little bit more about dysautonomia then I wrote this appendix/addendum/supplement/whatever for you. And if you’re satisfied with that brief description, great. Carry on reading.
One of the challenges of dysautonomia is that I never know when this barrage of unpleasant symptoms is going to hit me. I might think I’m okay but then a few minutes later find myself in quite the pickle…like the time I was trying to buy yarn and ended up having to leave the store empty-handed because I couldn’t stand in line and then I had to hang out in my car with my feet up on the dashboard for a while until I felt steady enough to drive home…or the time I had to crouch down to the floor of the library and pretended to be really enthralled by the books on the bottom shelf so that people wouldn’t think I was awkwardly waiting to start a game of leap frog.
As you can probably imagine, this can make going out in the real world and doing normal things like standing and walking very difficult.
So, sometimes I use a wheelchair.
After I was discharged from the hospital in November, except for going to appointments I really didn’t leave the house. I couldn’t leave the house. By March it was clear that things weren’t going to magically get better right away so I asked my family doctor to write me a referral to borrow a wheelchair from the Red Cross.
Honestly, I think this whole wheelchair thing has been harder for other people in my life to accept than it has been for me. Thinking about me in a wheelchair has made some people feel really sad and sorry for me. Other people, understandably so, have been caught very off guard when they’ve run into me using it.
But the thing is, I don’t feel sad about it and I don’t feel sorry for myself. It was actually an easier transition to make than you might think. I read an article once on the subject of how do you know when it’s time for a mobility aid? It stated that if you’re even considering using one there’s a good chance it’s already time and that seemed very logical and practical to me. As well, one of my closest friends is in a very similar health situation and she has been using a wheelchair for a while now. It’s allowed her to go out with her family and friends and to even travel a little. She really led the way for me. I saw what it did for her and I saw how gracefully she accepted it and used it to push past limitations instead of letting it become a limitation.
I wanted that. I wanted to be the one in control. I wanted to have some freedom despite my symptoms, not be limited because of them.
So I decided to give it a go. I haven’t used the wheelchair that much yet because it’s an old clunker that weighs about a thousand pounds and I’m not able to lift it in and out of the car by myself. Plus even if I could lift it, I still wouldn’t want to go anywhere on my own because the brakes don’t really work, the wheels have next to no grip and it’s not the right size for me so it’s a bit awkward to maneuver myself. But still, borrowing it was such a great decision! Ironic as it may sound, using a wheelchair has given me some freedom. Now that I know what a positive change it can make in my life, I am starting to jump through all the hoops required in order to get my own (SO many hoops…a story for another day) so that when I have to return this one in a few months I will still have that freedom. Hopefully I will have some independence, too.
I realize it might look like a step backwards, but I don’t see it that way. In the bigger picture it’s a step forward, an opportunity. It’s a good thing. So please, don’t feel sorry for me. There is no need for that. Celebrate with me instead! Be happy that I am finding ways to make this life work for me. There are a lot of things I didn’t think I could do anymore when really I just couldn’t do them on foot. As it turns out, though, there is more than one way to get around.
So to anyone else who is feeling stuck, maybe it’s time to try a different mode of transportation. Find some wheels and come roll with me. If you’re feeling trapped by circumstances beyond your control, if you’re feeling like you just can’t keep up with the world around you, or if you feel like you’re straight up headed in the wrong direction, come roll with me. Grab your wheelchair, bicycle, IV pole or rollerblades. Skateboards, wagons and golf carts are welcome as well. And if you’re really cool maybe you can find one of those soap box derby cars. Any metaphorical wheels will do!
Maybe we can’t take the path we planned on, but we will find another route. And wherever we need to end up, we will get there.
What’s that saying? Have wheels will travel?
Alright then. Let’s roll.