ysobel: (me)
[personal profile] ysobel
I tend to make occasional, and sometimes oblique, references to my physical condition, to being disabled, to being in a wheelchair, to mobility restrictions. And anyone who's met me IRL knows that I'm disabled, even if they don't know how or why. But I forget, sometimes, that not everyone knows what's up. That my disability is not as blindingly obvious on the internets as it is in meatspace. That even the people who see me regularly don't live with what I have, don't know it as intimately.

So.

A startlingly high percentage of the people working with Dreamwidth have Weird Medical Shit going on. I ... am one of those.

The condition I have is called Fibrodysplasia Ossificans Progressiva. (Well, usually, it's just called FOP, because three letters is easier than thirty-five.) This is a long complicated name that is actually relatively descriptive of the disease: muscle, and tendons, turning to bone progressively.

It only (... only. heh.) affects skeletal muscle and connective tissue; smooth muscles and organs aren't affected, which is good because I would be dead otherwise. But "only" doesn't seem the right word, given that the end effect is one of slowly turning into a living statue. Think about all the joints in the human body, and also about other movable parts like vertebrae and ribs, and then think about having all those parts fused into immobility.

Yeah. It's about as fun as it sounds.

I got lucky, relatively speaking, for someone with FOP:

* I had a fairly normal childhood -- the major motion restrictions didn't start until junior high. (It's something we have from birth, as a genetic condition, and it has a nonpredictable progression but usually manifests in childhood, often early.) I was even able to go to college, more or less normally. I was in a wheelchair at the time, but I could live completely independently. (I couldn't walk except for very short distances, but I could go to the bathroom by myself, dress myself, feed myself, get in and out of bed, shower, get myself places, all without help. Ten years later, I can't do any of those things.)

* I had a fairly non-scarring run of misdiagnosis -- sort of; I ended up doing a run of chemo, and also having a (counterproductive, as things turned out) surgery, but I didn't end up with more than that, like the alternate surgery that (I wasn't told at the time) would have left me paralyzed from the waist down. (Misdiagnosis as cancer is common; a lump of cartilage looks a lot like a tumor in many tests. In my case, they thought it was rhabdomyasarcoma at first, hence the chemo. There's one case in the FOP community where the doctors, thinking it was cancer, removed the girl's arm.) This condition is rare enough that no one really knows about it, which makes doctor's appointments endless amounts of fun even when you know what's going on

* And I ended up in a relatively neutral position. We have no control over when, or how, our joints get restricted. It can literally happen overnight, and it does what it wants to, and there is nothing that can be done. There are people that are bent nearly double at the waist, people that are straight as a board, people with heads fixed tilted to one side or tucked down... I'm lucky. Sitting, I look somewhat slouched, because of the angle of my hips and back, but that isn't bad, all things considered. My hands have nonexistent range (fingers work for the most part, wrists to a limited extent, rotation pretty much not at all) and I can't reach any part of myself with them, but they're positioned such that I can type, even though right now I have to use a stick with one hand, and I can look 'natural'. My head is angled slightly down, but basically faces forwards, and is more or less upright.

As an example of what FOP looks like, I give you Harry, the official FOP skeleton:

0013zkg9

(The details of bone formation varies individualistically. The general effect doesn't.)

Like I said. Fun tiemz. \o/

(I've been staring at this entry for three days and not making much progress, so I think that's all for now. Though I will mention that if you have spare money and are looking for a worthy cause to donate it to, please feel free to donate to IFOPA, which funds research and support for the FOP community. I can give you my RL name if you want to reference it in the donation, though that isn't required. It's not as well-known or wide-reaching as organizations for breast cancer research, or heart disease, or starving children in other countries, or what have you; but that doesn't make it any less important.)

Date: 2009-05-14 07:51 pm (UTC)
staranise: A star anise floating in a cup of mint tea (Default)
From: [personal profile] staranise
I'm glad you made this post.

There do seem to be more PWD on DW. I think maybe because there's enough of a community that the normal ableist shit ("Suck it up"/"Everyone has pain"/"Oh, once I twisted my ankle so I know what you're going through!"/"Have you tried healing crystals?") doesn't get to permeate the groundwater. It's nice, in my opinion.

Date: 2009-05-14 08:39 pm (UTC)
logovo: (Default)
From: [personal profile] logovo
Just a quick note to let you know I read your post and thank you for the information.

Date: 2009-05-14 09:53 pm (UTC)
rainbow: drawing of a pink furred cat person with purple eyes and heart shaped glasses. their name is catastrfy. (Default)
From: [personal profile] rainbow
I'm glad you wrote this so we would know more about you.

I'm going to read the guidebook at ifopa now.

Would I be correct in thinking being able to sociallise through the computer is at least (and probably more) life and sanity saving for you as it is for me?

*hugs offered if you'd care for htem*

Date: 2009-05-14 11:38 pm (UTC)
branchandroot: oak against sky (Default)
From: [personal profile] branchandroot
I am trying to bundle my reaction into words, and they're a bit tangled, but: thinking you are amazing; terrified upon trying to imagine experiencing this; grumbling along about doctors; thinking again that having a life is a triumph every day.

Date: 2009-05-15 03:34 am (UTC)
dame_grise: b&w Waterhouse painting (The Lady of Shallot) (Gray Lady)
From: [personal profile] dame_grise
I'd never even heard of such a thing. Thank you for educating me.

Date: 2009-05-15 03:32 pm (UTC)
From: [personal profile] amaliedageek
*puts arms around iDaughter* Well said, hon.

Date: 2009-05-15 05:04 pm (UTC)
From: [personal profile] chasy
wow. i did not know this about you and it seriously increases my respect for you as well as the You're Amazing factor. *hugs*

Date: 2009-05-16 02:55 pm (UTC)
forthwritten: stained glass spiral (Default)
From: [personal profile] forthwritten
Thank you for sharing this - I'm not quite sure what to say (or what would be helpful to say) but it gives me even greater respect for you and if I had the money, I'd donate to IFOPA.

Date: 2009-05-16 09:32 pm (UTC)
lacey: Me and my leather :D (Default)
From: [personal profile] lacey
Thank you for writing about it.

Date: 2009-05-17 02:19 am (UTC)
onceamy: Nothing special; just a pixelated rainbow. (Default)
From: [personal profile] onceamy
I am a lemming from no_pity.

That is some scary stuff there. Thanks for joining, and being willing to talk in detail about your mobility and living.

I'll certainly keep that charity in mind when I get my pension rise :).

Date: 2009-07-18 05:26 am (UTC)
quiara: (flowering tree pink)
From: [personal profile] quiara
Just a note to let you know that today was payday, so I made a donation to IFOPA. <3

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ysobel: (Default)
masquerading as a man with a reason

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