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.
Monday, September 28, 2009
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.
Monday, September 7, 2009
How Far Will You Go?
I remember the first time someone told me he was actively seeking the disability he'd needed for his entire lifetime. He told me in detail exactly what he wanted, precisely how it could be done and where he thought that might be accomplished.
My stomach dropped. I felt a little queasy. And I thought, this is wrong. This is very, very wrong that he would put himself through something so unsafe for results not even vaguely guaranteed. His level of desperation remains unspoken. He's a quiet man, so even telling me that much was a venture for him, a test for me of how much I could accept.
When I hear of people who have resorted to drastic DIY measures for amputations, I still get a little light-headed.
I believe now the right thing is for surgeons to grant demanded surgery. It took me a long time to get to this point.
I've been asked: If I could go into a hospital, get the SCI I need, essentially be assured the surgery was safe - would I do it?
My immediate response to myself was, yes. Absolutely. As for committing to it out loud, I haven't been so quick. I think I like thinking about it. And once the answer is out there, it feels like I can't change it.
Remembering the feeling I had when my friend told me he was looking for that surgery and that he would take it if offered, I haven't talked to anyone outside the BIID community about this, other than a researcher.
But as far as pretending goes, I find myself in the strangely comfortable position of being able to when I want to. I don't worry - not too much, anyway - about being spotted by anyone I know. It's extremely unlikely and if I did encounter someone I knew, well, let the questions begin.
As with my acquaintance who asked me about my crutches, I'll tell the truth about a chair when I get one.
But the whole megillah? Enh, I think that's going to have to wait.
My stomach dropped. I felt a little queasy. And I thought, this is wrong. This is very, very wrong that he would put himself through something so unsafe for results not even vaguely guaranteed. His level of desperation remains unspoken. He's a quiet man, so even telling me that much was a venture for him, a test for me of how much I could accept.
When I hear of people who have resorted to drastic DIY measures for amputations, I still get a little light-headed.
I believe now the right thing is for surgeons to grant demanded surgery. It took me a long time to get to this point.
I've been asked: If I could go into a hospital, get the SCI I need, essentially be assured the surgery was safe - would I do it?
My immediate response to myself was, yes. Absolutely. As for committing to it out loud, I haven't been so quick. I think I like thinking about it. And once the answer is out there, it feels like I can't change it.
Remembering the feeling I had when my friend told me he was looking for that surgery and that he would take it if offered, I haven't talked to anyone outside the BIID community about this, other than a researcher.
But as far as pretending goes, I find myself in the strangely comfortable position of being able to when I want to. I don't worry - not too much, anyway - about being spotted by anyone I know. It's extremely unlikely and if I did encounter someone I knew, well, let the questions begin.
As with my acquaintance who asked me about my crutches, I'll tell the truth about a chair when I get one.
But the whole megillah? Enh, I think that's going to have to wait.
Saturday, September 5, 2009
Lucky Me
Over the past week, I realized how lucky I've been in venturing into the world of BIID. Of accepting myself as a person with BIID, and ways of dealing with it and not dealing with it.
Even though my interest in leg braces, wheelchairs and polio goes back to the time when I was four or five years old, it wasn't until only five years ago that it dawned on me that I could search these things on the Internet.
I've been known to fling myself into things far more often than I should. Uncharacteristically, I sat back and took my time, absorbing things very slowly.
When I came forward, it was as a dev.
I had some unfortunate experiences as a dev. My usual sense of caution about certain things failed me and I was very nearly taken several times. "Taken" as in, nearly spent a lot of money I couldn't afford. "Taken" as in, believed people that had given me no real reason to trust them.
That phase didn't last very long.
Nearly from the beginning, though, I was fortunate in some people I met. I met people who not only accepted but welcomed my dev side but slowly helped me accept BIID.
I had people to chat with online. I had people to email and bounce ideas off of. And one relationship has gone to a very nice, comfortable place.
I've recently encountered someone who is acutely aware of how alone he was for over twenty years. That's a terribly long time to be alone, to harbor what seems like such a burden at times all by yourself. It's made me realize how fortunate I've been in a number of people I've met along the way.
As for people who knew me before the BIID awakening, I've told them very little. A close friend who has a disability, thinks it cool that I'm a dev, but she doesn't know I have BIID. I don't think she would react favorably if I told her.
I've told my therapist and my psychiatrist and they both obviously recoiled. My shrink is convinced it's related to OCD. I've given him websites to visit and contact information for his peers who are knowledgeable about BIID. I don't think he's investigated it, because the last time I spoke with him, he was advocating increasing the anti-OCD meds. My therapist thinks it's a very, very bad idea for me to obtain a wheelchair. Obviously, I'm not getting the support I want and need.
While I continue to search for a p-doc to help me deal with BIID, I'll see the one I've been seeing. The therapist has helped me with other issues in the past. Aspects of these issues pop up from time to time. Some of them might take a lifetime to resolve. In the meantime, I'll keep searching.
So...thank you to the people who have helped me get to this point. It's a very important point in my life, I think. Thank you for not rushing me. Thank you for letting me take my time. And thank you for welcoming me with open arms and minds when I got to this point. Your input, your friendship, your love and acceptance means so much to me.
Even though my interest in leg braces, wheelchairs and polio goes back to the time when I was four or five years old, it wasn't until only five years ago that it dawned on me that I could search these things on the Internet.
I've been known to fling myself into things far more often than I should. Uncharacteristically, I sat back and took my time, absorbing things very slowly.
When I came forward, it was as a dev.
I had some unfortunate experiences as a dev. My usual sense of caution about certain things failed me and I was very nearly taken several times. "Taken" as in, nearly spent a lot of money I couldn't afford. "Taken" as in, believed people that had given me no real reason to trust them.
That phase didn't last very long.
Nearly from the beginning, though, I was fortunate in some people I met. I met people who not only accepted but welcomed my dev side but slowly helped me accept BIID.
I had people to chat with online. I had people to email and bounce ideas off of. And one relationship has gone to a very nice, comfortable place.
I've recently encountered someone who is acutely aware of how alone he was for over twenty years. That's a terribly long time to be alone, to harbor what seems like such a burden at times all by yourself. It's made me realize how fortunate I've been in a number of people I've met along the way.
As for people who knew me before the BIID awakening, I've told them very little. A close friend who has a disability, thinks it cool that I'm a dev, but she doesn't know I have BIID. I don't think she would react favorably if I told her.
I've told my therapist and my psychiatrist and they both obviously recoiled. My shrink is convinced it's related to OCD. I've given him websites to visit and contact information for his peers who are knowledgeable about BIID. I don't think he's investigated it, because the last time I spoke with him, he was advocating increasing the anti-OCD meds. My therapist thinks it's a very, very bad idea for me to obtain a wheelchair. Obviously, I'm not getting the support I want and need.
While I continue to search for a p-doc to help me deal with BIID, I'll see the one I've been seeing. The therapist has helped me with other issues in the past. Aspects of these issues pop up from time to time. Some of them might take a lifetime to resolve. In the meantime, I'll keep searching.
So...thank you to the people who have helped me get to this point. It's a very important point in my life, I think. Thank you for not rushing me. Thank you for letting me take my time. And thank you for welcoming me with open arms and minds when I got to this point. Your input, your friendship, your love and acceptance means so much to me.
Friday, September 4, 2009
The Education Continues
I took another trip this week. I met an internet friend for lunch. Not only does she not know that I have BIID, she has let it be known that she loathes anything that has to do with dev-ism. Her late husband was severely disabled by an injury after they had just found each other. When she found out people could be turned on by what was a tragedy to her, it lit a flame that still hasn't died.
After lunch, we went shopping. I had a full tank of gas in my car, so volunteered to drive. Of course I had to clear out the front seat and there among the old coffee cups and half-empty bottles of water were my crutches.
I took them out to move them to the back seat and she looked at me. And she looked at me. "What are those for?" She pointed at me.
"What are what for?" I held the crutches in my hands but had no idea what she was talking about.
"Those." She pointed a lacquered fingernail at the crutches.
"Oh. My legs hurt sometimes." And it's true, they do. I have very minor medical issues with my legs. When it acts up, walking can be unpleasant.
I'm sure I'm probably projecting this on her, but I saw a little frown cross her forehead. Not of disbelief but of believing that I hadn't told her the truth. Was it something other, something worse? And what, she might have wondered, could make your legs hurt so much that sometimes you need crutches?
Well. How about multiple ankle sprains on both ankles to the point that doctors have been prodding me for a couple of years to have surgery on them to bring the bones back into alignment? How about muscle pulls and tendonitis? Put it all together and it could make for some less than spritely days.
I told the truth. And I don't think she believed me.
Not my problem.
-----
On my way home, I stopped in a quaint old town that I like. Because I was still close to my luncheon companion's home base, I didn't crutch.
But I realized that as a wheeler, this town would be virtually inaccessible to me. All the charming little store fronts have two granite steps in front of them, each about 4" - 5" tall.
-----
My crutches don't fit. Surely it's not right that they bruise my forearms? I have no idea what to do about it.
-----
I finally get the "You help me more by not helping me" thing.
While on the road, whenever I stopped, I crutched. And had five people falling all over themselves to help me.
I came to some conclusions. You probably already know this.
1. You help me more by not helping me. If you rush in front of me to open a door I can open, I'm at risk of losing my balance. That would not be pretty. For anyone. Then you'll really have to help me and you don't want that, trust me.
2. If I'm slower than you - and I am - go around me. One of my favorite poems has the refrain "I have my own velocity." And I do. I'm on my own speed of cruise control and I'm in the slow lane. Go around me.
3. I am fine. I have been fine all my life. I am fine now. Do not, for the space of even a few seconds, take it on yourself to be my protector, my very own rest stop Galahad.
4. To the snotty little girls at Starbucks, you were more interested in talking to each other and giving me attitude than to do what I asked - which was simply to close up the little hole in the top of the lid and give me a bag for the coffee cup. Do you see my hands? Do you see that they are occupied? No. Just give me the bag and no one gets hurt.
5. Take a picture, it lasts longer.
And I have no doubt that in months, years to come, there could easily be photos of me circulating on the Internet. Don't do that. It's demeaning.
----
And so the education continues.
After lunch, we went shopping. I had a full tank of gas in my car, so volunteered to drive. Of course I had to clear out the front seat and there among the old coffee cups and half-empty bottles of water were my crutches.
I took them out to move them to the back seat and she looked at me. And she looked at me. "What are those for?" She pointed at me.
"What are what for?" I held the crutches in my hands but had no idea what she was talking about.
"Those." She pointed a lacquered fingernail at the crutches.
"Oh. My legs hurt sometimes." And it's true, they do. I have very minor medical issues with my legs. When it acts up, walking can be unpleasant.
I'm sure I'm probably projecting this on her, but I saw a little frown cross her forehead. Not of disbelief but of believing that I hadn't told her the truth. Was it something other, something worse? And what, she might have wondered, could make your legs hurt so much that sometimes you need crutches?
Well. How about multiple ankle sprains on both ankles to the point that doctors have been prodding me for a couple of years to have surgery on them to bring the bones back into alignment? How about muscle pulls and tendonitis? Put it all together and it could make for some less than spritely days.
I told the truth. And I don't think she believed me.
Not my problem.
-----
On my way home, I stopped in a quaint old town that I like. Because I was still close to my luncheon companion's home base, I didn't crutch.
But I realized that as a wheeler, this town would be virtually inaccessible to me. All the charming little store fronts have two granite steps in front of them, each about 4" - 5" tall.
-----
My crutches don't fit. Surely it's not right that they bruise my forearms? I have no idea what to do about it.
-----
I finally get the "You help me more by not helping me" thing.
While on the road, whenever I stopped, I crutched. And had five people falling all over themselves to help me.
I came to some conclusions. You probably already know this.
1. You help me more by not helping me. If you rush in front of me to open a door I can open, I'm at risk of losing my balance. That would not be pretty. For anyone. Then you'll really have to help me and you don't want that, trust me.
2. If I'm slower than you - and I am - go around me. One of my favorite poems has the refrain "I have my own velocity." And I do. I'm on my own speed of cruise control and I'm in the slow lane. Go around me.
3. I am fine. I have been fine all my life. I am fine now. Do not, for the space of even a few seconds, take it on yourself to be my protector, my very own rest stop Galahad.
4. To the snotty little girls at Starbucks, you were more interested in talking to each other and giving me attitude than to do what I asked - which was simply to close up the little hole in the top of the lid and give me a bag for the coffee cup. Do you see my hands? Do you see that they are occupied? No. Just give me the bag and no one gets hurt.
5. Take a picture, it lasts longer.
And I have no doubt that in months, years to come, there could easily be photos of me circulating on the Internet. Don't do that. It's demeaning.
----
And so the education continues.
Wednesday, September 2, 2009
This Cherry Is Definitely Popped
Despite my one-crutch / wheeling trip to NYC this spring, I still didn't consider myself "out" as a pretender. After all, it was only for a morning, it was deliberately someplace where chances were extremely unlikely I would run into anyone I know. I even took a specific train line into the city to avoid all chances of running into someone.
But now, the cherry is definitely popped. And I don't know why this time seems so different and...so profound in its way. But that's how I know I'm not a virgin anymore.
This week, I went to a summer town on the Atlantic beaches. The chances of running into anyone weren't important. I chose the particular place because I was familiar with it. And the weather lately has been gorgeous.
All the disabled parking spaces were taken up. (I still have a temp permit through the end of this year.) I got my forearm crutches out of the backseat and stood up.
The weirdest thing happened. My body instantly believed that my legs wouldn't hold me up. My shoulders believed it. My legs believed it. I said, "Whoa!"
And then I set about learning a number of things you may already know. Maybe this is why I consider myself to no longer be an innocent.
I learned that what's usually a very easy walk for me unaided can turn into a grueling fifteen minutes, walking what I would normally cover in maybe three minutes.
I learned that the pseudo money belt I had on was a perfect thing to carry. A light backpack would have been good, too.
I learned that my zest to walk to the end of the boardwalk to the inlet went away pretty quickly. All told, I must have covered a whopping two hundred yards.
It didn't take long on that sunny day to wish I had a set of fingerless gloves. As unladylike as it sounds, my hands sweat.
Interestingly, I found myself pushed into getting healthy food for myself. All of the regular places along the boardwalk didn't have any place to sit. Or if they did, it was of the "you order it, you bus your own table" variety. I wasn't going to ask someone to schlep my stuff over for me and I wasn't going to let a slice of primo Jersey pie slide off the paper plate as I tried to carry it to my table.
I ended up going into a restaurant, to the second floor where there was shade and an ocean view. Yes, there was an elevator at the back of the restaurant. When I went up to the guy who was doing the seating, he looked perplexed. And then he started making kindly-meant suggestions.
"You know," he said, "I used to travel for a living and I always used to sit at a table. But then I started to sit at the bar. No one bothers you. No one looks at you because you're alone."
I laughed. I've been mostly alone for the past ten years. One of the quickest things I forced myself to get over was feeling odd when dining out.
And suddenly, I said, "I'm sorry. I need a chair. I can't sit on bar stools."
His face dropped.
And I have no idea where that come from. But there it was.
He patted me on the shoulder. "Sure, sure," he said. "I understand."
I highly doubt it, I thought, as I made my way over to the table. The table that faced a brick wall.
"Here," he said. "You're in the shade."
But there were other tables in the shade that didn't have me with my face to a brick wall. Hm.
When the time came for me to order, I uncharacteristically ordered a salad. Hey, I thought to myself, if I end up hauling this body around on my arms, it would do well if there were a lot less of it.
A couple was seated behind me. They moved. I don't know why.
The salad (delicioso) came out, but it was on a weird glass plate that spun around every time I tried to take a bite. Croutons were flying everywhere. And I realized my left hand was shaking so badly, I could barely hold the fork.
Doing something wrong in the crutching technique, I thought. Made a note of it.
Meanwhile, I waved down the waitress. "Could you put this on a bigger plate, please? I'm just getting it all over the place."
"I'll go get - " she said and I stopped her.
"I'm sorry. Could you please put it on the bigger plate?" I sat on my hands.
She came back with the salad on the bigger plate.
And finally, I was able to relax, enjoy the seaside atmosphere, the warmth of the sun, the confusion of gulls. I watched kids throwing a football on the sand and watched one kid plant face first into the sand. Ouch. But he got up, found the ball and tossed it back.
There were about ten perfect minutes there. It was lovely.
I tipped the waitress well, paid my bill, stopped into the amazingly accessible ladies' room, then got in the elevator going downstairs.
Once within range of the parking lot, I stood in line at the funnel cake stand. I asked if they could put the cake in a bag for me and they said sure.
I went to one of the benches facing the sea and carefully ate the greasy, sweet fried dough. Normally, I'd go for the whole thing, but again, I didn't want any more. Again, I thought of hauling this old body around.
I hoofed it back to my car and as I opened the door, I thought, this is over. I have to tell my legs to work now.
I found them reluctant to go along with the scheme. I put my crutches in the front passenger seat while holding onto the door frame.
How odd it was to pull my feet in, to position them on the floor mat and tell myself that they not only worked now, they had to work.
That's not right, I thought. There's something very wrong about it.
When I got home and stepped into my house, the same thing occurred.
This outing as a pretender - which felt like very real and not a bit like pretending anything - has happened and there's no un-happening it. And I'm glad.
But now, the cherry is definitely popped. And I don't know why this time seems so different and...so profound in its way. But that's how I know I'm not a virgin anymore.
This week, I went to a summer town on the Atlantic beaches. The chances of running into anyone weren't important. I chose the particular place because I was familiar with it. And the weather lately has been gorgeous.
All the disabled parking spaces were taken up. (I still have a temp permit through the end of this year.) I got my forearm crutches out of the backseat and stood up.
The weirdest thing happened. My body instantly believed that my legs wouldn't hold me up. My shoulders believed it. My legs believed it. I said, "Whoa!"
And then I set about learning a number of things you may already know. Maybe this is why I consider myself to no longer be an innocent.
I learned that what's usually a very easy walk for me unaided can turn into a grueling fifteen minutes, walking what I would normally cover in maybe three minutes.
I learned that the pseudo money belt I had on was a perfect thing to carry. A light backpack would have been good, too.
I learned that my zest to walk to the end of the boardwalk to the inlet went away pretty quickly. All told, I must have covered a whopping two hundred yards.
It didn't take long on that sunny day to wish I had a set of fingerless gloves. As unladylike as it sounds, my hands sweat.
Interestingly, I found myself pushed into getting healthy food for myself. All of the regular places along the boardwalk didn't have any place to sit. Or if they did, it was of the "you order it, you bus your own table" variety. I wasn't going to ask someone to schlep my stuff over for me and I wasn't going to let a slice of primo Jersey pie slide off the paper plate as I tried to carry it to my table.
I ended up going into a restaurant, to the second floor where there was shade and an ocean view. Yes, there was an elevator at the back of the restaurant. When I went up to the guy who was doing the seating, he looked perplexed. And then he started making kindly-meant suggestions.
"You know," he said, "I used to travel for a living and I always used to sit at a table. But then I started to sit at the bar. No one bothers you. No one looks at you because you're alone."
I laughed. I've been mostly alone for the past ten years. One of the quickest things I forced myself to get over was feeling odd when dining out.
And suddenly, I said, "I'm sorry. I need a chair. I can't sit on bar stools."
His face dropped.
And I have no idea where that come from. But there it was.
He patted me on the shoulder. "Sure, sure," he said. "I understand."
I highly doubt it, I thought, as I made my way over to the table. The table that faced a brick wall.
"Here," he said. "You're in the shade."
But there were other tables in the shade that didn't have me with my face to a brick wall. Hm.
When the time came for me to order, I uncharacteristically ordered a salad. Hey, I thought to myself, if I end up hauling this body around on my arms, it would do well if there were a lot less of it.
A couple was seated behind me. They moved. I don't know why.
The salad (delicioso) came out, but it was on a weird glass plate that spun around every time I tried to take a bite. Croutons were flying everywhere. And I realized my left hand was shaking so badly, I could barely hold the fork.
Doing something wrong in the crutching technique, I thought. Made a note of it.
Meanwhile, I waved down the waitress. "Could you put this on a bigger plate, please? I'm just getting it all over the place."
"I'll go get - " she said and I stopped her.
"I'm sorry. Could you please put it on the bigger plate?" I sat on my hands.
She came back with the salad on the bigger plate.
And finally, I was able to relax, enjoy the seaside atmosphere, the warmth of the sun, the confusion of gulls. I watched kids throwing a football on the sand and watched one kid plant face first into the sand. Ouch. But he got up, found the ball and tossed it back.
There were about ten perfect minutes there. It was lovely.
I tipped the waitress well, paid my bill, stopped into the amazingly accessible ladies' room, then got in the elevator going downstairs.
Once within range of the parking lot, I stood in line at the funnel cake stand. I asked if they could put the cake in a bag for me and they said sure.
I went to one of the benches facing the sea and carefully ate the greasy, sweet fried dough. Normally, I'd go for the whole thing, but again, I didn't want any more. Again, I thought of hauling this old body around.
I hoofed it back to my car and as I opened the door, I thought, this is over. I have to tell my legs to work now.
I found them reluctant to go along with the scheme. I put my crutches in the front passenger seat while holding onto the door frame.
How odd it was to pull my feet in, to position them on the floor mat and tell myself that they not only worked now, they had to work.
That's not right, I thought. There's something very wrong about it.
When I got home and stepped into my house, the same thing occurred.
This outing as a pretender - which felt like very real and not a bit like pretending anything - has happened and there's no un-happening it. And I'm glad.
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