We bought me a wheelchair this week. The reasons are entirely practical and it doesn’t mean I’ve gotten worse. When we go to Disneyland, we won’t have to worry about whether rentals are available, for one thing.
Yesterday Paul and I went to the Tim Burton exhibit at LACMA. Without a doubt the chair saved my energy pool from going really seriously overdrawn. Of course there were issues I hadn’t banked on, mainly art and signage I had to crane or twist my neck to look at.
There’s other, less tangible things I have to figure out. The loss of agency when I get into a chair that someone else is pushing is really jarring. I asked my husband to let me do the “excuse me, coming through” thing even when he was pushing, since it felt so weird sitting there passively while he did all the work. Which is the whole point of getting the wheelchair in the first place, to save me energy, so I need to get used to it.
It felt more normal to wheel myself when we were going our own ways in the exhibit, but you know what’s more nerve-wracking than getting used to controlling a wheelchair? Doing it around a zillion people and extremely expensive works of art. Good thing I usually like a little trial by fire. I’m happy to report I don’t owe LACMA any money, nor medical expenses for any other patrons. Next up: wheelies.
Being pushed around a museum in a wheelchair definitely takes a lot of getting used to. The few times I’ve done it, I’ve gone with groups of people, so they can take turns pushing. (As a single person I have to be creative about recruiting “pushers.”) It does make you realize that even technically “accessible” experiences still aren’t optimal in a lot of ways – there are definitely things you can’t see from a wheelchair, like books displayed on table-style vitrines. I’ve been more inclined to go to very small galleries and exhibits without a wheelchair, and manage just by going slow, flexing legs a lot to control OI, and sitting down often.
The most hair-raising experience, though, is using the wheelchair service at airports. It often makes me think of Mr. Toad’s Wild Ride. (It’s more mellow at smaller/less busy airports, I’m sure, but at LAX it’s a thrill a minute.) I always feel like I should be wearing steel-toed boots because I’m knifing through the crowds of people, luggage, etc. feet-first. NOT a situation for open-toed shoes!!
Anything that helps you do what you want to do is a good thing! (Hard to be passive, though – I am terrible at it!)
I’ve had a wheelchair for a few years now, I don’t have to use it all the time but it has been such a lifesaver when I do! There are just some things that would be impossible without it because they involve too much walking. There have been times when having the chair has meant that I can still go to concerts that I would have otherwise had to miss. It has taken a long time to get past the emotions that come with surrendering so much power to the person pushing me, but I try to drown any of that out with the wonderful memories that it has made possible
I just discovered your blog tonight when a friend with ciguatera (very similar long-term effects to ME) told me how helpful her Wii Fit has been and I went online to do some research. Thanks for your review and for your blog in general! I’ve been too tired to do much online exploration lately so I hadn’t heard the awesome news about the new criteria! I just sent a link to the article and to your blog post to my CFS buddies and the various people in my life who I’ve been trying to transition to the mouthful that is myalgic encephalomyelitis.
I like your style and the topics you choose to write about, I like your perspective, and I’m a KoL player, as well! (I haven’t played in a few months due to a combination of online-unfriendly-fatigue and a little Glitch addiction I seem to have developed. Have you tried it? Probably a little lite for a WoW player, would be my guess.) At any rate, I will be following you with interest!
I’ve used a mobility scooter independently for over ten years now, so when my mother (I was living with her at the time) suggested, for her comfort (because they are much more lightweight), that I try using a transport chair instead of a wheelchair that I could push myself around in, it was more than
a little disconcerting. It meant that I was completely surrendering my will and independence to whoever pushed me, because transport chairs cannot be operated except by being pushed by someone else.
One thing that you may encounter is something I encountered with the transport chair many times, and it will take a lot of patience on your part to deal with: people speak to the person who is pushing the person in the wheelchair, rather than to the person in the chair – cashiers, pharmacists, etc. It’s disturbing, and more than once, I had to catch their attention
when I was picking up a prescription that my mom had wheeled me
up to the counter to get. They’d look at her – even though I was
the one who had asked for it – and she hadn’t said a word. It
was as though being in a wheelchair robbed me of personhood.
Another thing is that when you want to speak to the person pushing you, it’s necessary to twist yourself around in the chair so they can hear you clearly – again, this is something I had to do a LOT. This can be quite painful if you have to do it a lot. If you can work it out beforehand with the person pushing you, try to agree that if you want to talk, have them stop the chair and come around the front of the chair to talk to you instead.
Hope some of this is helpful, and good luck with your new wheels! DO try and run some people over if they don’t hear the “excuse me, could you please move?”- it’s great fun! Or you could get one of those “AA-WOOOO-GAH!!!” horns. *evil grin*