Narrative

[mariness]

When heading out Monday I nearly spilled into the street because of a crack in the sidewalk at an odd angle. I clutched the handlebars, straightened myself, braked, stopped in the hot sun for several minutes until the ground stopped shifting and my feet were actually where my eyes said they were. Then I let the iPod sing out Emmylou Harris and cheered up.

You'd think by now I'd be used to this, and to a certain extent I am, but you never really get used to knowing that someone else's failure to fix the sidewalks can end up stealing minutes from your day and making you sick.

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Found a small two bedroom one bath house online in a nearby location that just might fit my budget. I went to go look, and stopped at the edge of the street, looking down in frustration, knowing that it didn't matter what the hell the house looked like or what condition it was in; I couldn't reach it or live in it because the street it is on has no sidewalks and has a speed limit of 35 miles per hour.

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On good days I honestly completely forget I'm sick. I feel normal. The earth doesn't shift or spin; I can sit up and stand without a single twinge of dizziness, walk without needing a cane or a wall. I still carry the cane for emergency uses, but it's more swinging it around.

I love, love the bike trail nearby which takes me through a Victorian era town and various parks and great trees and some exciting hills (yes, I can make it to Clermont, although not to any useful place in Clermont, on the trike). So on good days I mount up and head west, iPod on, looking at trees, waving at everybody passing at me and coming in the opposite direction. When I'm really lucky I get to see zebras and ostriches. I meet and chat with people.

Good day: I headed out merrily enough, stopped for water at the Killarney station, decided I was still feeling great, headed out further. It hit without warning, on a flat part of the trail; I could feel a – wooziness isn't quite the right word, but we'll use it for now.

And I suddenly realized that I didn't know if I could get back.

I got off the trike; placed myself in a prone position on the edge of the path, listened to music, told people that stopped by that I just needed to rest for awhile.

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I stopped to chat a couple weeks back with a man in a power wheelchair who has been trying for years to get the city of Winter Garden to focus on sidewalks. The city finally did do several repairs on Dillard Street, although they've left the several places where sidewalk users have to cross slanted driveways; if you are in a wheelchair or a trike this means that you are moving at an angle, which makes you feel as if you are going to fall into the street, and certainly prevents you from stopping until you are on flat sidewalks again. We are hoping they hit Story Road next (which is a sidewalk nightmare). So, sidewalk repairs, yay. New sidewalks, not so much.

What would also really help is sidewalking/trailing State Road 50, which right now sits as a horrific barrier to us getting anywhere. What's especially frustrating is the number of businesses on State Road 50 that we could reach/help financially support if we could get to them, or if we could cross the street. Technically, for instance, two movie theaters are within range of my trike (and we think one of them is within range of his power wheelchair) if I could take the direct route of State Road 50, which I can't. (The indirect route isn't sidewalked, either.) There's a computer repair store less than four miles off, completely out of my reach. And so on.

(I got hit by a semi-truck when attempting to cross State Road 50, to give you an idea of the problem.)

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On medium days I'm fully aware I'm not well. But sometimes I tempt fate anyway, like a couple of weeks ago, when I felt like crap, but needed milk and eggs and fruit. Well, I told myself, you're just feeling like crap, but you're not actually dizzy. So I got on my trike, which usually makes me feel better (I genuinely love this trike) and headed down, cheering up as I went. See, I told myself. No problem. You can do this.. Made it to Publix, got a shopping cart, walked around, lifted up my left arm to reach something and came crashing down. I felt the planet tilting wildly, fiercely, to the right and thought I was going to fall off it; I could barely see.

Also, pain. The fun of having a doctor tell me that maybe I should consider knee surgery given the multiple osteochondroma and my new tendency to fall every couple of weeks, or sometimes every couple of days, only given the risks of surgery for me right now maybe that isn't the best move, and the probable best move, along with lots of stretching exercises that I need to do on the floor because if I try to do them in other positions I will fall, is to spend yet more time in a wheelchair. Note the feeling fine above. The terror of trying to get myself and my trike home through the dizziness and pain. The difficulty of reaching for ice in the freezer, knowing that sometimes just raising my arms is what will bring on the dizziness.

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I so, so wish the world had more sidewalks. My life is planned around sidewalks.

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Days go by where I realize I am feeling better, that I'm doing ok, where I start feeling guilty for calling myself disabled at all – and then it hits again. Or I'll notice some minor thing – my feet or hands swelling up (this is inconsistent and seems unrelated to other symptoms).

What's sometimes frustrating is trying to convince people, on good days, that I really am fine and I can do whatever (well, maybe not rock climbing, but I can do anything else.)

Of course, equally frustrating is dealing with people who have only seen me on good days; I keep worrying that they think I'm faking it. Hmm.

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Sometimes I don't even do a good job of explaining why I'm upset. It bothered me, deeply, that I was recognized at the Winter Garden Music Fest because I was in a wheelchair, and because I was brought to the attention of the cops by the truck accident and the trike theft – both of which happened because of my illness.

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When the fatigue hits I can sit blankly at the computer and not remember the sentence I was typing. When the headaches follow, as they do, I can't look at the computer screen at all. I'm yelling at myself, a lot, for the lack of progress I'm making on writing (as opposed to publishing.)

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When I'm speeding down a hill on my trike - to the point where the motor shuts off in alarm - this is totally awesome. There's one particularly great hill that doesn't have a stop sign at the bottom where I can just stop pedalling, grasp my handlebars and go WHEEE! (Yes. I often say this out loud, because if you can't shout WHEE! when barrelling down a hill on a solid steel trike when can you? Plus, sometimes I lose my hat along the way.) I gotta tell you I'm kinda sorry for those of you in cars who don't get to race down hills like this.

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Lots of people keep telling me to dwell on the positive. Quite frankly both my mother and T are driving me up the wall with telling me how much better I'm doing, which is true on good days and not at all true on bad days. Doing less does seem to help with bad days – except for last Friday, which was a bad day even though I'd done nothing that day or the day before.

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So, for those of you who want "narrative," who want to understand the disabled "story," I gotta ask you: is it so hard to understand that maybe, just maybe, this sort of thing isn't the sort of thing I want to dwell on in this blog? That maybe I want to spend my time here chattering about good and bad television and movies and two of the cutest cats in the world and what they are up to at the moment (sleeping; I was kinda hoping they'd provide a nice cute story to insert here but apparently it is Nap Time and I don't think we dare excuse this) and upcoming amused stories about the Wii? That what I want to remember, to focus on, is that my life is far, far more than sidewalks and falling? That I also have friends and politics and excellent food and trees and all kinds of places in Florida that still await exploration? That it includes the Epcot Food and Wine Festival and gaming and that I apparently will be playing in an Exalted game again (I know, South Florida people, I know, but that's another post.) That I can and do do other things? That like everyone I'm hoping George RR Martin manages to finish A Song of Ice and Fire? (No, that really didn't have anything to do with the rest of this post. I just thought it needed saying.)

Look, I'm not against disability advocacy. I sense I'll be doing more and more of it in upcoming years. But asking me – or, actually any disabled person, really – to spend my time telling you the narrative of the disabled experience is problematic at best. The thing is, no two disabled people will have the same experiences. Deaf people, for instance, have a completely different set of accessibility issues to worry about. The fact that I am not confined to a wheelchair – and can actually use the trike – also means that I can't really speak for all wheelchair users, either, many of whom have completely different needs than I do. I have a chronic illness, which has its own set of needs. (And if the POTS forum has taught me nothing else it's that even POTS people have different needs.) I'm certainly willing to increase awareness, to argue for increased accessibility, and to be a public advocate for the Wonder That is My Electric Trike. (I do love that trike. That's been one of the best things of the year.) I'm spending more time on disabled forums, increasing my own awareness of ableist language, of accessibility issues, of marginalization.

But that doesn't mean I feel like spending my time writing about the Shitty and Frankly Often Boring Parts of My Life, or constantly whining about accessibility issues. Nor, for that matter, do I feel like becoming a poster child for The Cheerful And Happy Disabled Person Who Faces Her Adversities With Humor and Grace And Inspires Us All, because, let's face it, as my close friends will immediately note, that's not even remotely close to the truth. I haven't always handled my illness well at all. (Except for the trike. I like the trike.) But despite bad moments here and there (August and September had several) I've so far managed not to fall into one of my major depressions in part because, well, this isn't my life. If this illness becomes my life…

Yeah. I'm not, honestly, sure I'm mentally able to handle that. Maybe other, more mentally stable people can. But I'm having enough issues just dealing with the "disabled" label and with the restrictions on my life as it is.

So if it's all the same to you, I'd rather focus on my non-restricted life and various fun things and the terror that is Hollywood entertainment, thanks muchly. And on occasion amusing people with snark about bad movies.

(Those reading this and thinking, with horror, oh, god, she's about to go on a major Dollhouse rant, isn't she? Well, I'm kinda done with ranting for the day, but, yes, that's coming.)

This rant brought to you by commenter Marc at Feministing, among many other comments throughout the net. Thanks, I think, to trouble for the link.

Comments

[mariness]

You're welcome.

In all fairness, until I became sick, I didn't really realize what life with a disability was like - it's one of those things that's very easy to ignore until you can't. So I usually don't blame people for not knowing.