The Fever

I've been thinking up ways to save money. At this point, not really enough wiggle room to let it happen. But still, I ponder.

I thought hard, really hard, about getting myself a right AFO. After all, my ankle is all kinds of messed up. I don't have any health insurance right now, so of course that couldn't pay for it. I went to an online brace site and added up that my AFO might cost me upwards of $500 - $600.

Next month, I start a new job. Although I know the AFO wouldn't have arrived in time, I thought, wouldn't it be nifty to just start this way, with a right AFO? I know no one looked at me for long when I went in for the interview. Since this is a contracting gig, no one asked me any questions about needing accommodation to perform my job.

I checked eBay to see if I could find something that would make do.

Instead, I found a wheelchair. A beautiful wheelchair. A Tilite ZRA. For more than $800, plus $50 for shipping.

I suddenly found out a lot about wheelchairs. I learned to measure myself and learned that this chair might be too big for me. But that didn't stop the obsessive round-and-round thoughts in my mind. I dug in and learned more. For one thing, the back didn't appear to be adjustable and I couldn't go any higher than 15".

But I had this irrational fever for this chair.

Although I will be paying my bills out of my savings account until my first paycheck arrives, I wanted this chair. And I knew I was being completely irrational about wanting it.

I begged someone to talk me down from the ledge and he did.

I felt like I could finally breathe again.

Then, quite wisely, he said, "Just because you got around it this time, don't think it won't come back twice as hard."

He's right. And I wish he was wrong. But he's been coping with this longer than I have and had the stones to acknowledge it long before Miss Repression 2009 here did.

The fever will be back. And what then?

Avatar

I'm surprised I haven't heard more from the wheeling community about the movie "Avatar". The previews that I saw showed a paraplegic who was once a soldier, willingly giving up his human form to not be a para and to be a soldier again.

A number of things strike me.

First, the movie is set in 2154. I truly believe that medicine will advance enough to heal spinal cord injuries in the next hundred years. And I can't believe that technology won't advance to the point where wheelchairs will be necessary. Although in fairness, this
was rolling around a hundred years ago and


<-- this is what's rolling around now. You can do all kinds of things to chairs but wheels are still pretty much wheels.

So I'm surprised "Avatar" can't do much better than that. I just checked out some design sites that have some amazing chairs on them that I have no doubt are totally impractical for those with an SCI higher than T-12.

But the essence of "Avatar" seems to be "I would rather be an alien than have a disability." Wha? The ABs are still rocking that pity thing.

Thinking

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

It May Be All in My Head, But It's Not Where You're Looking

Last night during a progress report call to my shrink, I told him that BIID has been especially strong in me lately. "In fact," I said, "I'm looking into buying a wheelchair."

A silence. A horrified one? Then he sighed and said, "I was hoping the Lexapro would take care of the OCD."

I silently screamed, It's not OCD!

He asked me if I'd been going to a therapist. I told him I had but at that particular time BIID was not troublesome. Dr. Therapist is slightly aghast at BIID and has cautioned me more than once about buying a chair. Luckily, I don't go to see Dr. Therapist to deal with BIID.

Dr. Shrink suggested I come see him next week. I will, but suspect I already know the outcome. He will see BIID as a bad thing.

I don't know if wheeling is my karmic destiny, but I do know that I want to attempt some time at it, in a chair that fits. I went to NYC last spring and rented a chair at a museum but fit me it did not, no matter that the experience was generally a good one. Actually, it seemed perfectly natural.

What I want is a doctor to write a Rx for a chair for me. I don't know how else to get what I'm looking for.

The one experience I had with someone trying to sell / give me a used chair made me more than slightly uneasy.

If you have any handy tips, please send them on their way. In the meantime, I have a feeling I'll be spending enough money on Dr. Shrink and Dr. Therapist to pay for a pretty fine used chair. Gah.

Songs

I've noticed these songs and was wondering if anyone else had paid particular attention to them, too.

They sent a little extra prickle up my neck when I heard them and I was sure no one else heard them the way I did, with the obvious exception of "Ruby" by Kenny Rogers.

The first one is "Paint It Black."

"I see the girls walk by dressed in their summer clothes.
I have to turn away until my darkness goes.
I see a line of cars and they're all painted it black.
With flowers and my love both never to come back
I see people turn their heads and quickly look away."

What went through my eight year old mind was a disabled guy watching his unrequited love walk away and people refusing to look at him.

Even better was the Beatles' "You've got to Hide Your Love Away."

"Here I stand head in hand,
Turn my face to the wall.
If she's gone I can't go on
Feeling two foot small.

Everywhere people stare,
Each and every day.
I can see them laugh at me
And I hear them say

Hey, you've got to hide your love away..."

Again, I was maybe ten years old when this came out by my dev mind was formed by then and for years thereafter, I was frozen whenever I heard what sounded like a "dev" song.

It's hard to remember anything else that's hit me quite as hard as those two songs. I bought the single of "Ruby" and sneak-listened to it when I thought no one else was around.

Nowadays, I know I've heard some songs that may lean toward dev-ness or "look out, you're going to kill yourself."

Here's "High and Dry" by Radiohead:

"Two jumps in a week, I bet you think that's pretty clever don't you boy.
Flying on your motorcycle, watching all the ground beneath you drop.
You'd kill yourself for recognition; kill yourself to never ever stop.
You broke another mirror; you're turning into something you are not.

Don't leave me high, don't leave me dry
Don't leave me high, don't leave me dry

Drying up in conversation, you will be the one who cannot talk.
All your insides fall to pieces, you just sit there wishing you could still make love
They're the ones who'll hate you when you think you've got the world all sussed out
They're the ones who'll spit at you. You will be the one screaming out.

Don't leave me high, don't leave me dry
Don't leave me high, don't leave me dry"

Ooh. Harsh. Someone badly broken while trying to fly.

Any other favorites? Any others spring to mind? Inquiring minds want to know.

Stay at Your Own Risk

If you are attacked in a Marriott hotel parking garage or lot, too bad, so sad. You should have known better.

I've always been a big fan of Marriott hotels. I can't think of one time when I've stayed in an accessible room that wasn't. (Traveling with a wheeler.) The staff have been pleasant but not overbearing or sickly sweet.

Check here for the whole story: http://content.usatoday.com/communities/hotelcheckin/post/2009/08/68496944/1

Marriott eventually - three years later - issued an apology but apparently not directly to the victim.

A woman was leaving the hotel with her two little kids. She was in the garage, packing up, when a rapist grabbed her, put a gun to her head, and sexually assaulted her.

And the Marriott lawyers said, hey, it's her fault.

If you're a person with a disability, your risk of being victim of a violent crime is 4% - 10% greater than an AB's.

Not a pleasant thing to think about, but it's a consideration. Especially if you're staying at a Marriott.

Grrrr...

All The News That's Unfit to Print

In the past ten minutes, I've read two news stories that have me seething with frustration.

The first was that a court in Australia has decided to let a quadriplegic man starve to death if he wants to. This is way too much like that misdirected (if you'll excuse the pun) schmaltz, "Whose Life Is It, Anyway?". In the news report, it's not mentioned how long the guy has been a quad. It may be as little as a year. I'm sorry, a year is not long enough to recover from the trauma and adjust to a new life.

The man complains that he can't even read a newspaper by himself anymore. I'm gobsmacked. Has no one in Australia or even his nursing home ever heard of assistive technology? Or even a mouth stick?

I realize that newspapers can't accurately reflect reality. They have limited space, but I don't think there are limited pixels. What's the real story here? How long has he been injured? Did he receive counseling? Physical therapy? Is he, for some reason, unable to control a power chair?

Even if he's been asking for this ruling since November 2008, when he moved into this nursing home, that's not long enough to decide a life or death issue. It isn't.

Granted, I have not been in his position, but I know plenty of other people who are and none of them are sitting around moaning about wanting to die.

The other story is about a five year old boy, Hassani Campbell, who has cerebral palsy and is missing. I'll leave the editorializing about the situation, because I want to focus on this statement from CNN.com:

cerebral palsy is a debilitating brain disease that inhibits motor skills.

This makes it sound like...well, like MS, where the condition may drastically worsen over time. I realize that there can be cognitive deficits involved with CP but has never been the case with CPers I've encountered.

Here's a definition from the Internet, so you know it's true:

a loss or deficiency of motor control with involuntary spasms caused by permanent brain damage present at birth

I realize that in the greater scheme of things, these two incidents may dwindle in importance.

Still, shoddy reporting, incomplete reporting and untruths annoy me. A lot. And I think diminish the people they're writing about.

Get your facts straight. And get them all. And shame on any editor who keeps them from hitting the screen the way they were meant to be.

Staying On Task

I have other issues besides BIID. (There. I admitted that I have BIID. More on that some other time.) I've been dealing with them as long as my manageable BIID.

The depression I have isn't very manageable.

My experience with psychiatrists, overall, has not been a good one. More often than not, he tries to impose his will on me without asking me what it is I need and where I want to get to with the assistance of medication he prescribes.

This week was my latest dance with psychiatry. I knew I would have to address BIID and likely would have to explain it, but I also knew I would have to get past it.

I had to address BIID because my referral to this particular psychiatrist came by way of a BIID researcher, although it was a colleague-of-a-colleague deal. This new doctor asked how I came to be referred to him. I explained and said, "But I'm here to deal with depression, not BIID. That's under control."

We talked about BIID, which he hadn't heard of before. He was deeply interested in it and said he had heard of body dysmorphic disorder. He wanted to know more.

His fee is outrageously high, but having dealt with bad doctors before, I know good ones can be well worth the price. Still, I wasn't there to educate him. There are web sites. He's a very intelligent man. He can Google like the rest of us and will no doubt come up with the sites I would have recommended.

I think one of the tasks that faces a person with BIID seeking help with mental health issues is moving beyond BIID, and more importantly making sure the doctor sees beyond it too.

Hey, it's a new thing. It's a cool thing. It's kind of a funky thing for doctors to wrap their heads around.

Part of my responsibility as a patient is to know as much I can and truthfully report as much as I can about my condition. I know the difference between BIID-induced blues and the long-lasting depression that has been with me for a very long time. In this meeting, I had to make sure the doctor saw beyond the interesting and new and moved on to the particular problem at hand.

I pushed him not merely once or twice but three times to move on. Again, he's a smart man, so he got it and we moved on.

I don't doubt that one day we'll revisit BIID, but it will likely be on his dime and not mine.

I Cannot and Will Not Hook You Up

If there are male devs who read this, please keep it to yourself. Do not IM me. Do not email me. Do not comment on this blog. Do not pass go and do not collect $200.

I was contacted via IM today by someone who asked me if I'm disabled and then asked me if I could refer him to a chick with a disability.

This was creepy and slightly disgusting. I've now had direct experience with why male devs are regarded with suspicion.

You know, generally I'll talk to anybody about anything. But this guy went right to the heart of the matter and the third IM he sent me asked me about my disability and if I'm a wheeler.

When I've chatted via IM with guys with disabilities, the disability rarely features in the conversation. It's more of 'what kind of person are you, what do you like to do, how's life treating you' than 'please tell me the level of your SCI, whether you have sensation or not and what adaptive equipment you use.'

Please, there are web sites for that. Go off with your icky friends and play your icky games there.

And what makes you think my gurlfrens need or want to talk to the likes of you?

Perv.

Lies Employers Tell

I worked for a Fortune 500 company for about a year, in their Human Resources / Human Capital (I hate that expression) / Personnel office. I was doing IT work and didn't do any hiring except for the person to replace me when the time came for me to move on.

It was stunning to see how a pervasive discriminatory mindset worked in what should have been an open-minded and totally law-abiding setting.

Applicants with "obviously black" names (Tanisha and Shaquan are two I remember) were not considered for employment. If your name was Justin, Kate, Josh, Heather or something along those lines, you were considered for employment.

When the company moved into its huge new headquarters, the design was bad. Very, very bad. One woman in HR had multiple sclerosis. She used one forearm crutch and easily got around the older, smaller building. In the new building, she was unreasonably far away from accessible parking and, more importantly, a bathroom. The cafeteria was a hike even for AB me. She voiced her dismay to management.

The company response was to get her a scooter to use at work.

Although she knew it was pointless and didn't resist, her dismay deepened and she grudgingly used the scooter. I'm guessing she disliked being forced "down" to a scooter and in reality although it gave her distance, it did not give her greater maneuverability. Too bad.

I left that company and went to a much smaller company. My manager frequently handed me job reqs to review for the department. Three times, I pointed out to him that the job req's specification for being able to lift 25 pounds was not accurate and might be construed as blocking the way for someone with a disability. I have never in my IT career been forced to lift anything weighing more than five pounds. My manager was surprised and offended. "But we would make an accommodation," he said. And I knew that was a lie.

Last week, I had an interview at a very, very big company. I had been using crutches while my leg was on the mend and on that day, my leg still hurt. It didn't matter. I set them aside for the duration of the interview.

I wasn't prepared for the amount of walking I had to do. Up stairs. Down stairs. In my lady's office. By the time it was over, I was limping noticeably. When I got home, I settled on the couch with a pile of pillows under my leg. I stayed on the couch for the next two days and when I moved around, it was with the aid of crutches.

Imagine my non-surprise when I did not get the job.

The Un-Social Contract

For about the past week, I've been mostly on crutches. In a dazzling display of balletic grace, I fell up the stairs to my house.

I have gone through the usual everyone wants to help business and honestly, have been grateful to have doors held open for me. But today I realized that if the doors slid open automatically, this would have been a non-starter. Most of the doors I went through were doors to public buildings. It was easier to get into the door of a house than the door to my library.

What I have not been so crazy about is people presuming they can touch me - people I've never met before in my life, non-medical people. I'm sure it's well-meant, but it can literally throw me off balance. Reaching around me, reaching in front of me, reaching for my crutches, reaching for me, these are movements that can startle me. I'm not steady on my pins to begin with.

There seems to be a general understanding that the public could and should help someone who is obviously temporarily disabled. The kind of crutches I've been on are the apres-ski break kind, the underarm crutches now in a light and easily maneuvered aluminum.

It was very, very, very weird when I initially showed up at the urgent care facility after my failed gazelle-like spring up the stairs.

I couldn't walk at all on my own, but someone had passed along a pair of forearm crutches to me long ago, saying, "You'll never know when you might need them." Although they didn't do the trick, they got me from the car into the building, which I wouldn't have been able to do unaided.

I gimped my way into the check-in and the freak-out immediately began. I was offered a wheelchair and gratefully took it. When the nurse came in to take my bp and temperature, she looked at me from the corner of her eyes. "What's your underlying condition," she half-whispered to me.

Clumsiness? Hastiness? A pair of really vicious fake Croc shoes?

"A hurt leg," I said.

"Oh. It was hurt before?"

"No, I hurt it an hour ago."

"Not MS?" (The staff at this particular facility has been trying to assign MS to me for the past two years. I have never been diagnosed with MS and I don't have any symptoms of it.)

"No."

"Then why do you have those crutches?"

"To get me from the car to this building."

The nurse went away. The doctor came in, looked at me, declared that I needed a CT scan, that the operator had left half an hour ago, and I would have to go to the hospital. The doctor left and no one came back in. No one. No one came to give me anything for pain, to help me get dressed, they just left me there.

I dressed myself, took the new pair of aluminum crutches offered me, got into my car and drove myself to a completely different hospital's ER. I used the aluminum crutches to go in and there was given pain medication and was talked to like a human being.

It made me wonder how someone with a pre-existing disability is treated when he goes into an ER with a completely unrelated problem. I hope you aren't shunted off to the side like I was. But it wouldn't surprise me if you were.

I'm gradually getting better but not as quickly as I would like.

I have an interview for a contract gig tomorrow and do not want to walk in on crutches. Neither kind.

Got Milk?

Last night, I watched "Milk."

The disability rights movement needs a Harvey Milk. If a martyr for the cause, how much the better?

What Milk had going for him was a constituency. From the time he was able to list businesses that were gay-friendly in the Castro until his assassination, he had a physically centered constituency that he could rally, excite, and motivate.

I knew a guy who said he always avoided being with other wheelers or people with a disability. "It looks too much like the bus from the group home just got in," he said. I think that's a fundamental error in thinking. Lucky for him, his parents were wealthy and handed him a business that grosses millions every year. He insulates himself with money.

Try these on for size:

"I don't hang around with other gays. It looks like Christopher Street on Halloween night."

"I don't hang around with other African-Americans."

"I don't hang around with other overweight middle-aged white chicks. It looks like the Red Hat Society just invaded."

Come. On.

How on earth can you create a movement when there's no solidarity? When you don't want to belong to the group you belong to? Despite what Disney and after-school specials try to tell you, the individual matters pretty much squat. If you get a thousand, twenty thousand, a million people to come together, that's a force greater than one. That's a force that can gather and display its power in how it votes, businesses that are frequented, products that are bought.

At this point, you're only disenfranchised if you want to be.

Are people afraid of the angry, bitter cripple stereotype? What's the price of speaking up? Is it really that hard to get angry, disenfranchised people to speak up?

I admit I am not hooked in to the disability rights movement. If there's a Harvey Milk out there, I'm unaware of it and would love to hear that there is.

Please. Prove me wrong.

The Anti Zone

Someone asked me about my Sunday wheeling experiences.

Did people stare at me?

I have no idea. I wasn't looking at people, I was looking at the paintings.

Did people treat me like I was invisible?

No. I think people were acutely aware of me. On a beautiful and crowded spring Sunday, the museum was packed by noon, but I experienced no problems with crowding. When I backed up, I always checked that no one was behind me and no one ever was. Thinking about it, I realized that was odd. Instead, I realized that there seemed to be no one around me at all.

In fact, I seemed to have created an inviolable space around me. I have to admit, given my intense dislike of crowds, I liked that.

When you were a kid, you probably had a toy of iron filings encased in plastic and you moved a magnet around to draw the filings near the magnet. I was the opposite of that. I created an anti-magnetic zone.

I already know what it's like to feel invisible. I've known that feeling for at least the past twenty years and have felt it especially in the past ten years. Being deliberately avoided somehow makes me visible. You have to see me to avoid me.

I know that to some among the wheeler community, invisibility and avoidance are sources of grief, but I say bring it.

And the big deal about all this is...?

Last night, I set my alarm clock for early this morning and when it rang, hauled myself out of bed.

I had a nice-ish outfit waiting, black trousers, black shoes, a black sweater, conservative earrings. Dressed myself, put on some makeup, stuffed my windbreaker with the stuff I would normally carry in my purse and had a momentary panic when I couldn't find my car keys. I found a spare and will look later for the first set.

In the car, I put both forearm crutches and by the time I parked near the train station, had already decided I would go with one crutch. Surprisingly, it did help with my feet.

Previous experience has taught me that a physical signal like this can be valuable. I had surgery about ten years ago and although my feet were not involved in the surgery, I used a cane when I was outside. This showed people that they would need to go around me if they wanted to go faster because I was already going as fast as I could.

I took my time getting my ticket and a cup of coffee at the station and took a seat on a bench. By the way, I have already noted how very inaccessible this place is for a wheeler. It might be okay if you have a wheelie placard, but it will involve a ride in a stinky-piss elevator. I took the escalator to the platform and sat on the bench closest to the door.

Took the train into the city and walked across the street to the bus. There was a wheeler woman there and her friend waiting to get on the bus. The driver lowered the ramp, WW went up and I gratefully followed.

During the trip to the museum, the driver kept double checking where WW and Friend were going - in Spanish. "Si, si," they kept saying in Spanish. "We're going to this museum."

"And me too," I added in Spanish. WW and Friend laughed. When we were left out, the bus driver kept telling us to go to the east, but I knew we needed to go west and he had dropped us two blocks north of the ground floor entrance.

I borrowed a wheelchair, put my crutch in coat check, and with WW & Friend, took the elevator to the Impressionist paintings.

I'm sure I'll get a better report from my body tomorrow, but right now, I am very, very, very grateful that I used the wheelchair. My feet don't hurt. At all. My shoulders are a little sore, but if I hadn't had to walk twenty blocks south, they wouldn't. (The bus route was closed due to a parade.)

This is it, overall: I was not turned on. I was not all jazzed. I was relieved. Relieved, do you hear me? Relieved. It was so good not to have to worry about my feet giving out on me. I had a very small, specific agenda. I wanted to see the Impressionist paintings at the museum and I did. Painlessly.

I got to spend a lot of time with the paintings I wanted to see. I read the informative little plaques next to the paintings. I got to study the brush strokes in a Van Gogh iris. I saw the mosaic-like tiny rectangles of color in Paul Signac's "View of the Port of Versailles".

Later in the museum cafe, I had lunch with a glass of wine - just one - that had me dangerously close to an "I love you, man" moment while watching the skaters and bikers zoom through Central Park.

When I knew I was saturated with beauty for one day (likely a year or two, unfortunately), I returned to the cloak room, reclaimed my crutch, returned the wheelchair and went on my way.

I don't know what the big deal was about all this in my mind. Using a wheelchair proved to be a wonderfully useful thing that saved me a great deal of discomfort and allowed me to enjoy my museum experience far more than I would have otherwise.

Accessibility, Independence and Pure Bone-Headedness

I heard someone say not too long ago that most people with a disability will sometimes go to lengths to appear less disabled than they are. If a quad can get by with a manual wheelchair, he'll ditch all thoughts of a power chair, even if it means less mobility at a greater effort. In the last couple of days, I've seen guys who probably needed KAFOs or at least AFOs walking unbraced.

Over the last year, I've developed problems with my feet, ankles and knees. They aren't always painful, but when they are, they hurt like hell and I spend those days moving around as little as possible. Doctors I've consulted advocate surgery, but I'm not convinced that that's the proper route to take.

I have an ugly orthotic that I could wear on the bad days, but I don't.

Perversely, my pretender / wannabe / dev self has a new fixation. I live close to New York and I want very much to go to one of the museums there. No matter how I get there, it's going to take a lot of walking. As much as I need to see beautiful things, have a day away from my ordinary life, I know that this expedition presents problems.

Getting to the museum involves a train trip and a bus trip and a lot of walking.

Am I ready to take my crutches into the city? Can I deal with getting onto the train platform, then getting from the train station onto the street? It's a considerable distance. Will my shoulders give out? I know that by the time I got to the museum, I would be very willing to rent one of their wheelchairs.

If I don't take crutches, how far can I walk before my body lets me know it's had enough? Would I be able to make it to the bus stop? When I got to the museum, I would show up as someone who looks perfectly AB - who wanted to rent a wheelchair.

The last time I went into New York, to this museum, I ended my visit sitting on the steps, trying not to cry like a baby because I hurt so much. Walking a block and sitting down is not a possibility in NYC. Once you get up, you keep going until you fall down.

In the end, sitting here in front of my PC, I know that there are so many issues here that I don't know what the one real issue is. And so I stick in my day to day life and beauty will have to wait.

That Girl Again

A few days ago, I was at the doctor's office when I heard a couple of kids squeal in the hallway, the distinctive sound of crutches on the carpet, and into the waiting room came a little girl in KAFOs on crutches.

With her was her mom, her baby sister and her younger brother. The mom settled the kids down and they behaved beautifully. In fact, I don't think I've ever seen such well-behaved children before.

I smiled at them and went back to my magazine. I kept my eyes on the paper although I wanted very much to study the girl's braces. When she came in, I saw from the corner of my eye thermo-plastic with sturdy aluminum or stainless steel joints.

It wasn't long before I was called, so left, the little girl nearly forgotten. She was somewhere on the edge of my consciousness and I couldn't figure out why she was still here.

This morning, I realized that she was the new version of the little girl on the palomino that I saw so many years ago. It was so odd. It was as if a circle had been completed.

But if it was completed, why am I still having such a problem with my urges to go out crutching in public? This has been a problem with me lately. Although I've been away from this blog for a long time, my interests, my wishes, my desires have not left me.

What does it mean, I ask myself. What does it mean?