I've been away from here, thinking a lot lately.
I understand why some people with BIID have a desire to get approval or at least avoid the loathing of the PWD community. Part of that is the reason why I've been quiet. One PWD blogger made a comment that they thought a question about accessibility in NYC directed their way was then used - by a pretender. Gasp. Horror. Because after all, the subway station belongs to this other blogger, of course.
After much pondering, I've decided that I want to move along in here.
I know that if I have BIID (and I've been told by a medical researcher that I have all the symptoms), I don't think it's as severe as it is with other folks.
I don't obsess about it. I put my mind to it from time to time.
It's a tremendous relief to me when I'm at work to think of myself in the body image I want, an L3-4 polio para. The brief seconds I use to think of it bring me a deep peace that I use to get more work done.
Lately, my focus is on a right AFO. Part of this is because my right ankle truly is screwed up. I've ignored all the recommendations for surgery, chiefly because I have yet to find the surgeon I feel comfortable with and I can't afford to miss the time for work.
There may be a wheelchair coming my way soon. I want to take a weekend away, a very, very, very rare occasion for me, and am thinking of where I could go within a 3 hr drive of NYC, a place that is accessible. Accessible is a hard thing in the northeast US. The only place I can think of is Atlantic City and AC is just lost on me. I don't get it. I have several vices, but gambling isn't one that I have. In fact, I just don't get it.
Still, I ponder the place to go. And that, too, brings me a kind of peace.
Saturday, December 5, 2009
Monday, September 28, 2009
It's A Hell of A Town
Went into the city the other day, crutching it.
As instructed by someone who would know, I found the elevators in Penn Station. Not only did they work, but they didn't stink of piss. I needed to go downtown, so for the second time in my life, I took the subway. I didn't have the energy to go in search of the bus stop. I'd already been across the terminal and back.
I suppose because my expectations had been set by the misadventures of others, I wasn't overly dismayed by what I found. And I realized anew that this is no place for wheelers without a bodyguard of bouncers. On crutches, I could go up a couple of steps, but I didn't dare try to go into the tiny, tiny shops in Chinatown.
I thought it was pretty hysterical that one subway stop that has a big wheelie man blue badge on the maps does indeed have a very nice elevator in the station. And when you get to the exit, there's a flight of about 12 steps.
None of it really came as much of a surprise to me until I headed back home.
At the train station, I realized that my choice was to either go down a flight of two dozen steps or down the elevator that reeked of urine. Apparently, it's much harder to curb your bladder in Jersey than NYC. I reluctantly chose the elevator and when I got to the bottom, realized that I would have to walk about three city blocks to get back around to the front of the train station.
This is when I wanted to grab the idiot who had designed this, shake him by the collar and say, "Do you have any idea how stupid this is?" But I was tired and I knew I was cranky. Having to walk those extra blocks did not improve my mood.
I live in a state full of idiots. I don't know why this came as such a surprise to me.
As instructed by someone who would know, I found the elevators in Penn Station. Not only did they work, but they didn't stink of piss. I needed to go downtown, so for the second time in my life, I took the subway. I didn't have the energy to go in search of the bus stop. I'd already been across the terminal and back.
I suppose because my expectations had been set by the misadventures of others, I wasn't overly dismayed by what I found. And I realized anew that this is no place for wheelers without a bodyguard of bouncers. On crutches, I could go up a couple of steps, but I didn't dare try to go into the tiny, tiny shops in Chinatown.
I thought it was pretty hysterical that one subway stop that has a big wheelie man blue badge on the maps does indeed have a very nice elevator in the station. And when you get to the exit, there's a flight of about 12 steps.
None of it really came as much of a surprise to me until I headed back home.
At the train station, I realized that my choice was to either go down a flight of two dozen steps or down the elevator that reeked of urine. Apparently, it's much harder to curb your bladder in Jersey than NYC. I reluctantly chose the elevator and when I got to the bottom, realized that I would have to walk about three city blocks to get back around to the front of the train station.
This is when I wanted to grab the idiot who had designed this, shake him by the collar and say, "Do you have any idea how stupid this is?" But I was tired and I knew I was cranky. Having to walk those extra blocks did not improve my mood.
I live in a state full of idiots. I don't know why this came as such a surprise to me.
Saturday, September 26, 2009
Mr. Sensitivity
At the moment, I'm working for a Fortune 100 company. In case you aren't familiar, these are companies with tens of thousands of employees working for them. Because they are so big, they often draw public scrutiny.
This company, due to its type of business, is very, very careful about proclaiming its diversity. And it's true that there are a number of people who come from ethnically diverse heritage. But despite the number of disabled parking spaces in front of the building, I've yet to see one wheeler or even one person on a crutch or even with a limp from a heel blister.
In this particular assignment, I'm being very careful not to mention or even vaguely hint at my age. There are few people at the company who have reached my age of decrepitude. (However - go figure - all the executives are white men in their 50s and 60s.)
Although I've already learned it would be in vain to hope for a permanent slot there, I still don't want to completely discount the possibility.
I've worn glasses since I was in the second grade. My prescription is something like 20/400, 20/450. In other words, what a person with good vision can see 450 feet away, I have to be 20 feet away to catch a glimpse of it. No need to blindsim. I can just take off my glasses.
Yesterday, one of the strapping young men came over into my cubicle for something. He caught sight of the monitor attached to my laptop.
"Whoa! Those are some f*ing big fonts! Those icons are huge! Why do you have everything so big? You must be blind as -"
I turned around. I gave him what my ex-husband called The Look.
Stunned by my mighty power, Mr. Sensitivity backed away in silence.
The whole thing made me uneasy.
Come to think of it, I haven't seen any blind folk with their white canes in the building either.
All talk. No action. And not much in the way of sensitivity, either.
This company, due to its type of business, is very, very careful about proclaiming its diversity. And it's true that there are a number of people who come from ethnically diverse heritage. But despite the number of disabled parking spaces in front of the building, I've yet to see one wheeler or even one person on a crutch or even with a limp from a heel blister.
In this particular assignment, I'm being very careful not to mention or even vaguely hint at my age. There are few people at the company who have reached my age of decrepitude. (However - go figure - all the executives are white men in their 50s and 60s.)
Although I've already learned it would be in vain to hope for a permanent slot there, I still don't want to completely discount the possibility.
I've worn glasses since I was in the second grade. My prescription is something like 20/400, 20/450. In other words, what a person with good vision can see 450 feet away, I have to be 20 feet away to catch a glimpse of it. No need to blindsim. I can just take off my glasses.
Yesterday, one of the strapping young men came over into my cubicle for something. He caught sight of the monitor attached to my laptop.
"Whoa! Those are some f*ing big fonts! Those icons are huge! Why do you have everything so big? You must be blind as -"
I turned around. I gave him what my ex-husband called The Look.
Stunned by my mighty power, Mr. Sensitivity backed away in silence.
The whole thing made me uneasy.
Come to think of it, I haven't seen any blind folk with their white canes in the building either.
All talk. No action. And not much in the way of sensitivity, either.
Thursday, September 24, 2009
A Scream in the Night
I woke up in the middle of the night, yanked out of sleep by a ferocious pain in my leg, the one I injured earlier this year.
It felt like I'd stepped into a bear trap, that the steel teeth were digging deeper into the flesh surrounding my calf.
I sprang out of bed and nearly fell when my leg would hold me up. Instinctively, I tried to walk it out, tried to stretch it out, this charley horse of all charley horses.
Then eventually I realized someone was screaming in pain. It was me. Of course, even while I was doing it, I realize how pointless it was. Screaming did not make the pain go away, but it seemed like there was a disconnect from my brain, that the searing pain went through nerves correctly directly with screaming without bothering the brain.
I'm not used to pain anymore and I think I'm turning into something of a sissy about it.
But as the muscle in my leg spasmed and spasmed again, I thought, this would be part of it, you know. This would be part of it, too, getting where my body needs to go. And no screaming allowed.
Could I take this not just once every ten years but possibly several times every day?
It comes with the territory. We do what we must. And stop screaming. And go back to bed.
It felt like I'd stepped into a bear trap, that the steel teeth were digging deeper into the flesh surrounding my calf.
I sprang out of bed and nearly fell when my leg would hold me up. Instinctively, I tried to walk it out, tried to stretch it out, this charley horse of all charley horses.
Then eventually I realized someone was screaming in pain. It was me. Of course, even while I was doing it, I realize how pointless it was. Screaming did not make the pain go away, but it seemed like there was a disconnect from my brain, that the searing pain went through nerves correctly directly with screaming without bothering the brain.
I'm not used to pain anymore and I think I'm turning into something of a sissy about it.
But as the muscle in my leg spasmed and spasmed again, I thought, this would be part of it, you know. This would be part of it, too, getting where my body needs to go. And no screaming allowed.
Could I take this not just once every ten years but possibly several times every day?
It comes with the territory. We do what we must. And stop screaming. And go back to bed.
Saturday, September 19, 2009
RTFM
...or at least make a few phone calls.
Back in the days when I was in IT (once called IS, once called Data Processing), newcomers would have a trial by fire. People would be helpful at first, but once the newcomer started dragging on you, it was perfectly acceptable to bark, "RTFM!" (Read the F*ing Manual.)
Alas, there is no manual for BIID. There are some scholarly and not-so-scholarly articles in journals and the usual "Eww!" response from the disability community, but serious scholars and researchers are thin on the ground. And if they're on the ground, they should get up and get back to work. Pronto.
I've been seeing a good but wildly expensive psychiatrist, Dr. Yow, for a couple of months. When he last called to see how I was doing, I told him that there was likely a wheelchair in my future. He instantly offered me an appointment.
When I went to see him, he told me again that he thought this is a form of OCD and was surprised that the SSRI I'm taking didn't seem to help with this.
"Of course," he said indulgently, "It's possible that this is a form of fantasy that you're acting out."
Dude. Whatever.
I told him that there is doctor researching BIID who is surprised that he never gets calls from psychiatrists treating people with BIID. Then I gave him Dr. Researcher's name.
Another indulgent smile. Dude. Have you been nipping at your own free samples cabinet?
Dr. Yow said, "I know Dr. Researcher. We were at school together."
Good. You'll feel comfortable calling him and chewing the fat with him about me. And Dr. Researcher may tell you that I am not fantasizing and that BIID doesn't usually respond all the well to SSRIs.
And who do you think referred me to you, hmm?
I'm not doing your homework for you. I gave him Dr. Researcher's phone number. I got a new set of scripts, because the meds he has me on seem to be working well. And another appointment. And if he hasn't called Dr. Researcher by then, all discussion of BIID ends.
Back in the days when I was in IT (once called IS, once called Data Processing), newcomers would have a trial by fire. People would be helpful at first, but once the newcomer started dragging on you, it was perfectly acceptable to bark, "RTFM!" (Read the F*ing Manual.)
Alas, there is no manual for BIID. There are some scholarly and not-so-scholarly articles in journals and the usual "Eww!" response from the disability community, but serious scholars and researchers are thin on the ground. And if they're on the ground, they should get up and get back to work. Pronto.
I've been seeing a good but wildly expensive psychiatrist, Dr. Yow, for a couple of months. When he last called to see how I was doing, I told him that there was likely a wheelchair in my future. He instantly offered me an appointment.
When I went to see him, he told me again that he thought this is a form of OCD and was surprised that the SSRI I'm taking didn't seem to help with this.
"Of course," he said indulgently, "It's possible that this is a form of fantasy that you're acting out."
Dude. Whatever.
I told him that there is doctor researching BIID who is surprised that he never gets calls from psychiatrists treating people with BIID. Then I gave him Dr. Researcher's name.
Another indulgent smile. Dude. Have you been nipping at your own free samples cabinet?
Dr. Yow said, "I know Dr. Researcher. We were at school together."
Good. You'll feel comfortable calling him and chewing the fat with him about me. And Dr. Researcher may tell you that I am not fantasizing and that BIID doesn't usually respond all the well to SSRIs.
And who do you think referred me to you, hmm?
I'm not doing your homework for you. I gave him Dr. Researcher's phone number. I got a new set of scripts, because the meds he has me on seem to be working well. And another appointment. And if he hasn't called Dr. Researcher by then, all discussion of BIID ends.
No Joy in Quaintville Today
Today I had some errands to run that took me well beyond my usual borders. I headed off to Quaintville, which I rightly expected would be invaded by droves of aging-hippie-chic boomers and their uber-cool offspring. Still, I thought I would get there before the hordes.
Lately, I'm keeping my crutches in my car.
I found a parking spot in Quaintville and got out with my crutches.
One thing I realized quickly upon gatching a glimpse of myself in a store window: I should never wear anything white that reaches down to my butt. For some reason, on crutches my butt looks huge. ("Do these crutches make my butt look big?") Cover it with white and it's just scary.
Again, I found myself limited in energy. I walked less than half the distance I usually would have. I also found that people were scared of me. Not quite cross-to-the-other-side scared, but scared enough to walk on the sidewalk curb.
I got the usual "Hey, how are ya?" generic greeting from a couple of the shop owners. One ignored me completely.
In Quaintville's ancient bookstore, I found myself in a warren of little rooms. I picked up an interesting book ("Stitches" by David Somebody) and began leafing through it. And was an impediment to foot traffic.
Walking back to my car, I know people were checking me out while doing pretending to avert their eyes. I caught a couple of them.
I have a wheelchair waiting for me. It's a matter of a few formalities and some investigation, but it will likely be mine within the month.
Quaintville will be entirely off limits. Much like the town in upstate NY, Quaintville's shops have steps leading into every one of them (except the Dunkin Donuts, which has a nice ramp). The beautiful little glass and jewelry store. The store with imported Italian pottery. The store of fanciful things. I won't be able to get into them. There aren't even little steps you would wheelie over - these stores have four or five steps in semi-circles (and no banister) with a landing and then two or three other steps. It was hard to get up them on crutches.
No joy in Quaintville. Not today. Not unless I go AB. And right now, that's just not on the agenda.
Lately, I'm keeping my crutches in my car.
I found a parking spot in Quaintville and got out with my crutches.
One thing I realized quickly upon gatching a glimpse of myself in a store window: I should never wear anything white that reaches down to my butt. For some reason, on crutches my butt looks huge. ("Do these crutches make my butt look big?") Cover it with white and it's just scary.
Again, I found myself limited in energy. I walked less than half the distance I usually would have. I also found that people were scared of me. Not quite cross-to-the-other-side scared, but scared enough to walk on the sidewalk curb.
I got the usual "Hey, how are ya?" generic greeting from a couple of the shop owners. One ignored me completely.
In Quaintville's ancient bookstore, I found myself in a warren of little rooms. I picked up an interesting book ("Stitches" by David Somebody) and began leafing through it. And was an impediment to foot traffic.
Walking back to my car, I know people were checking me out while doing pretending to avert their eyes. I caught a couple of them.
I have a wheelchair waiting for me. It's a matter of a few formalities and some investigation, but it will likely be mine within the month.
Quaintville will be entirely off limits. Much like the town in upstate NY, Quaintville's shops have steps leading into every one of them (except the Dunkin Donuts, which has a nice ramp). The beautiful little glass and jewelry store. The store with imported Italian pottery. The store of fanciful things. I won't be able to get into them. There aren't even little steps you would wheelie over - these stores have four or five steps in semi-circles (and no banister) with a landing and then two or three other steps. It was hard to get up them on crutches.
No joy in Quaintville. Not today. Not unless I go AB. And right now, that's just not on the agenda.
Saturday, September 12, 2009
The Right Stuff
Someone asked me if I had braces.
Alas, no. I don't.
The answer to "why not?" is very simple: I've been unemployed for over eight months. I have perhaps two months' worth of expenses in my bank accounts and then I'm skint. If you do a little research on KAFOs, do the math. The ones with all the bells and whistles that I want would add up to about $2500 - $3000.
There are many, many things I could do with that much money and none of them involve stainless steel uprights and leather cuffs.
Besides, I can't find the right shoes I want with them. If I could find them, I would buy them and wear them. It would mean something to me.
I have two pairs of crutches. One pair reaches to just under my armpits. The other is a pair of forearm crutches and as I've mentioned, when put to hard use, they don't fit me and leave bruises on my forearms. Still, I'm grateful to have them.
This past week, I went shopping in thrift stores and found a pair of shoes. These aren't the shoes, but they're an acceptable substitute. They appear to have been made on a straight last. They are black and boxy and ugly. Sometimes I have to remind myself that I used to walk three miles every day in 3 1/2" heels.
I bought the shoes, in a rush because the store was closing.
When I got home, I discovered their subtle charms. For one thing, they have very thick orthotics in them. The orthotics are removable. With the orthotics in them, they are the most comfortable shoes I've ever worn. If I leave the orthotic in one and take out the other, I instantly have a shorter leg. I've been able to make the taller shoe even higher. Somehow, I feel that it's necessary.
It's funny to me that I'm exploring this. I allow myself to slowly feel around for what feels right.
My long-repressed image of my body is an L2 - L4 polio para. Because I did such an excellent job of repressing this for so many years, I wonder if there's anything else I forgot. So I ask myself questions - arm amputations? And I'll go around for a day at home with one hand behind my back. I know fairly quickly what fits and what doesn't.
It's somehow reassuring that I keep coming back as that initial version of myself. Somehow it says that this is real.
With the exploring, I feel like I'm advancing. Having the right equipment, no matter how cobbled together - isn't that what most people have to do, anyway? - matters greatly to me.
There is a good chance that I'll be getting a wheelchair. I want this so much that I can't think about it for too long, knowing my thoughts would be completely taken up by it.
That, I think, will help, too, and I'm looking foward to the day.
Alas, no. I don't.
The answer to "why not?" is very simple: I've been unemployed for over eight months. I have perhaps two months' worth of expenses in my bank accounts and then I'm skint. If you do a little research on KAFOs, do the math. The ones with all the bells and whistles that I want would add up to about $2500 - $3000.
There are many, many things I could do with that much money and none of them involve stainless steel uprights and leather cuffs.
Besides, I can't find the right shoes I want with them. If I could find them, I would buy them and wear them. It would mean something to me.
I have two pairs of crutches. One pair reaches to just under my armpits. The other is a pair of forearm crutches and as I've mentioned, when put to hard use, they don't fit me and leave bruises on my forearms. Still, I'm grateful to have them.
This past week, I went shopping in thrift stores and found a pair of shoes. These aren't the shoes, but they're an acceptable substitute. They appear to have been made on a straight last. They are black and boxy and ugly. Sometimes I have to remind myself that I used to walk three miles every day in 3 1/2" heels.
I bought the shoes, in a rush because the store was closing.
When I got home, I discovered their subtle charms. For one thing, they have very thick orthotics in them. The orthotics are removable. With the orthotics in them, they are the most comfortable shoes I've ever worn. If I leave the orthotic in one and take out the other, I instantly have a shorter leg. I've been able to make the taller shoe even higher. Somehow, I feel that it's necessary.
It's funny to me that I'm exploring this. I allow myself to slowly feel around for what feels right.
My long-repressed image of my body is an L2 - L4 polio para. Because I did such an excellent job of repressing this for so many years, I wonder if there's anything else I forgot. So I ask myself questions - arm amputations? And I'll go around for a day at home with one hand behind my back. I know fairly quickly what fits and what doesn't.
It's somehow reassuring that I keep coming back as that initial version of myself. Somehow it says that this is real.
With the exploring, I feel like I'm advancing. Having the right equipment, no matter how cobbled together - isn't that what most people have to do, anyway? - matters greatly to me.
There is a good chance that I'll be getting a wheelchair. I want this so much that I can't think about it for too long, knowing my thoughts would be completely taken up by it.
That, I think, will help, too, and I'm looking foward to the day.
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