Jen Fizz

Public Property

2011-10-07T14:41:00.000-07:00

Until the last couple of months, I've been left alone when I go out. Steep ramp? Just give me time, I'll get my ass up it. Something too high on a shelf? I'll work it out. Those leap-up-it's-a-miracle-moments shouldn't happen and they don't.

However.

I've been going out more lately because I have better casters and caster wheels on my chair. And also because I've lost a little weight, enough to make a difference. What I'm finding is that I am now public property and I don't like it.

During the past month, I've been down to Atlantic City a couple of times. I don't gamble, but there's just something about AC (as we Jerseyans call it) that I like. For one thing, if you go during the week, four-star rooms are about a hundred bucks. For another, there's frequently wonderful restaurants and some good shows around, too.

I zipped down the Parkway recently and made a pit stop at one of the Parkway service stop areas. Got my chair out, ran down the guy who was eating ice cream in the ramp from the parking lot and looked at the two steps that separated the sidewalk from the rest stop.

There was a ramp. A crumbling and unhappy looking ramp. For a weakling like me, I knew it was going to be a challenge and it was until, lo, a great miracle occurred and I flew up the ramp. I turned and there was some man I'd never seen before in my life pushing me up the ramp. Into the rest area building.

I thanked him. It was only polite. But I grit my teeth at the same time.

What I noticed on this trip was that I was not invisible. People saw me. In a way, how could they not? Not only was I visible, but I was the village idiot and public property. People felt like they had to take care of me.

And I have to admit, for some reason during this trip I was not the sharpest crayon in the box and don't know why.

I'd been to the concert venue before and knew the ramp up into the hall area was steep and carpeted. I asked one of the ushers for some assistance and again, I got the Wheels On Fire treatment.

This particular artist is known for never having a set list and plays whatever requests are left on the part of the stage closest to him. I knew if I went down there I wouldn't get back. (Yes, I am getting the hint that I'm not as, ahem, fit as I should be.) I asked an usher to take it down for me and she refused. I tucked the song request back in my bag.

On the way out, a couple of people who had been sitting in front of me asked if they could push me down the ramp. I said no, that gravity was going its job admirably.

The rest of the time away from home was not without a few complications. I went to a museum for a special exhibit and the parking manager nearly knocked me out of my chair and I had to finally ask him to stop helping me.

It's hard to ask for help. It's not so hard to ask people to stop, because usually you're being treated like public property.

Disability as Combat

2010-10-03T06:15:00.000-07:00

I've never liked the metaphor of disability as a battle. It sounds as if disability is a war with tools that can make the disability go away.

In the same vein, I wince every time I see an obituary with "after a long battle with cancer" or some other disease. Sometimes with illness, it can be cured or at least put into remission.

If you're talking about a choice to go on with your life and cope versus staying in bed and turning your face to the wall, the big news is that this is a choice every person has.

Why make disability into a personal war? Are there hills to take? Bridges to destroy? This immediately places the person into a role where he or she is forced to be a combatant or a coward, instead of a person who makes their own decisions about the direction of their life. The person with a disability is expected to put forth extraordinary effort to no longer be who they are. It's one thing to have surgery to deal with painful spasticity and another to have chancy surgery to gain just another degree of mobility. It's for the individual to choose and no judgment should be made if the decision is no.

As hard as it was for me to take, I respected my mother's decision to have chemotherapy when she was diagnosed with Stage IV lung cancer. Already in precarious health, it was extremely doubtful that chemo would extend her life and would certainly degrade the quality of her life. I wished that she had done more in previous years to reach out to life - to find out how she could best become more mobile, how she could improve her health. Still, it was her choice. It was hard for me to accept it, but I did.

If there comes a point in the life of a person with a disability that he decides enough is enough, enough with the surgery, enough with this or that or whatever painful treatment with a minimum of return, then that's enough. Respect that.

It doesn't mean that he's a coward. It only means that he's comfortable in his own skin and makes his own decisions.

It's not a war. It's not a battle. It's living life day by day, every day.

Mail Order Takes an Interesting Turn

2010-08-24T17:20:00.001-07:00

The other day in the mail, I got a packet from Paralyzed Veterans of America.

They asked me to send me money.

Do I get my own paralyzed vet? Please?

Life Sentence for Speeding

2010-06-05T08:24:00.000-07:00

An acquaintance has recently blogged that the 22 year old Thomas Wopat-Something has received his just desserts if his spinal cord injury turns out to be permanent.

I am stunned at the maliciousness of this. This is a person whom I respect. I know everyone has an off day, but when I questioned her on this, she redoubled her statement. People on the Taconic speed all the time. Locals have been killed by non-locals who were speeding on what is a local road and not an interstate and certainly not a speedway. Those are tragedies and there's no doubt about that.

If Wopat-Something's spinal injuries are severe enough to cause complete or partial paraplegia, that's a harsh sentence for speeding. Yes, we know paraplegia is not the end of the world or the end of a life, although it does cause lives to take unexpectedly different directions most of the time.

For going too fast, Wopat-Something likely faces surgery, painful recovery, and rehab. I'm sure he would have much rather pay the $200 fine for speeding and lose his license if he was, in fact, driving under the influence. If he had been speeding, he should have slowed down.

That's like wishing Stage IV lung cancer on someone who smokes a pack a day. The punishment in no way mirrors the crime - if there was one.

Mostly, I'm surprised at the harshness of this woman's judgment. I know her usually to be just and fair, so this venomous take on this shocked me.

Ironically, this woman's husband was severely disabled before he died.

Could she have forgotten this so easily? Or has her anger marred her judgment?

I hope she doesn't find out that I went 80 mph on the Turnpike last Thursday.

Hanging wif my Peeps

2010-05-21T11:27:00.000-07:00

I just back from "Abilities" expo. These seem to be good to go to every three or four years. The pace of innovation isn't exactly breath-taking.

I have to come down off this high I'm on because all I can burble right now what how cool it was. How people looked me square in the eye and shook my hand. I was taken at face value - except for one guy who was in a chair, in KAFOs, who asked me within two minutes "what happened". And I replied - truthfully, as it turns out - lesions at t-12 and l-5. He said he was a polio. 'Scuse me if I'm skeptical.

Don't get me wrong. I am grateful for the chair I have now....but...but... as I was cruising down an aisle, a Quickie rep came up to me and said, "Aren't you kind of worried about that left wheel?" Yes, as a matter of fact, I was. It had a wonky feel to it, and as I was wheeling along, I kept it slow. I asked if anyone was repairing chairs and he pointed directly over my head at a sign in the next aisle for free wheelchair repairs.

Free! Free wheelchair repairs, although I imagine you would have to pay for the parts. I rolled over there and within five minutes, all was set in order. There were nuts loose. (Stop. Don't say a word.)

I went over to a major, major, major w/c manufacturer. They let me take two different chairs out for a test drive. One was good, but the second was the one I fell in love with. It fit me perfectly.

There was a demonstration of wheelchair/AB dancing on the other side of the convention center, so I zipped over there to watch. A female dancer was teamed with an extremely buff para. Be still, my heart. At first, I wasn't impressed but when it was just the two of them, things got muy caliente.

I saw a big open space away from the dancing and I went over there to dance. It was so freeing. The chair was a dream. What a wonderful thing! I take back every snotty thing I've ever said about wheelchair dancing.

I zipped all around the convention center - still in the test drive chair. In ten minutes, I saw what would have taken me hours in my own wheels. I went back to the sales guy - who turned out to be the international production manager. I asked how much the chair was and he told me a figure that would fund a two week deluxe trip to Europe. I gulped. And then I said, "I know you guys get asked this all the time, but do you ever sell demo chairs?" The sales guy pointed to a guy in another chair. "Ask him. He's the head honcho. He's the president of the company."

The Prez wheeled over and Sales Dude introduced us. We shook hands. Sales Dude put the question to him and then walked away. The Prez, who looked to be about my age, pondered the question. He went through a legal disclaimer about only selling through dealers, etc., etc., etc.

I have learned that the most amazing things happen if you just stand there. By just standing there at a mattress store, the price miraculously descended several hundreds of dollars. I just stood there.

"Insurance," he asked.

I shook my head.

He sighed. "E-mail me when I get back into the shop next week. Remind me about our conversation. Sales dude! Get the measurements on that chair she liked! Sometimes we have things that have just...amortized out. Maybe $500?"

I nearly wept. These gorgeous chairs. These swift and beautiful chairs!

Then he whispered, "But you can't, for God's sake, tell anyone we did this. The distributors would kill us."

I zipped my lip, locked it and threw away the key.

Everyone who saw my current chair looked at it and then back at me, in the spiffiness. They shook their heads pityingly.

With great regret, I got back into it. But make no mistake - I am grateful to have this one.

And I'll just wait for the spiffiness.

When You Hire A Negro

2010-05-12T18:14:00.000-07:00

Welcome to the XYZ Corporation handbook on interviewing and hiring a Negro.

As we all know, laws have been passed to make companies a more hospitable environment to Negroes. It is important that we learn to feel comfortable around people who are Negroes.

Interviewing a Negro
First, make sure the Negro understands where and when the interview is to be held.
When interviewing the Negro, do not judge the person by how dark or light his skin is. Sometimes, it might even be hard to believe a person is a Negro!
Do not make a point of mentioning the person's skin tone.
Do not judge a Negro's ability to do the job based on the person's Negro-ness.

Hiring a Negro
It is up to the Negro to identify himself as a Negro. Again, sometimes you can't tell that they might need extra help (also known as "accommodation") to perform the job they were hired to do.
Ideally, the person would identify himself as a Negro before beginning work in case accommodation is needed.
Before the Negro's first day, gather your staff to explain that the new team member you have hired is a Negro. Explain a little about the exact kind of Negro-ness the new hire has.
Don't stare at the Negro. It is perceived as an insulting and threatening gesture.
Make sure the Negro feels included in team meetings and activities.
You will find that Negroes are loyal and tend to stay longer at companies more than non-Negro employees. They are tremendous assets in this sense.

-------

Honestly, this is what I read online today at the company where I'm consulting these days. Oh - except "Negro" was spelled "person with a disability".

Well, Blow Me Down

2010-03-28T16:11:00.000-07:00

It doesn't happen so often anymore, but there are times in my life when I realize something or am made to see something I have not wanted to see.

When that happens, I tend to shut down. Before, I've deleted blogs or sworn that I'm never coming back, etc. etc.

I'm not saying that now.

But what I am saying is that I've had the wind knocked out of me and I'll be taking some time off here for awhile.

Fair wind and smooth sailing.

No Limits

2010-03-23T15:58:00.000-07:00

One of my fantasies is that I'm allowed to try every form of disability that I want to. Miraculously, I am restored to my ordinary self within a fantasy day or two.

I saw a video once of a Japanese woman who had an insert in her ear that made her gait spastic. I would love to get hold of that ear piece for a day or two.

Blindsimming is easy. All I have to do is take off my glasses, put on a pair of dark glasses, and I'm in business. Actually, it's a lot like every day life.

Deafness? I think my hearing is already impaired. Once upon a time, I had to use ear plugs to get to sleep, but I never took them out for a spin in public.

Most of my interest lies in mobility or lack thereof.

Again, my very rich fantasy life sometimes has been spending days in the House of Solange, an ordinary-looking woman (with the exception of her long leg braces) who can arrange to have many fascinating things happen.

Some go beyond the pale, but it's my pale and I can go beyond it if I want.

It's always satisfying to spend some time chez Solange, but it doesn't do to stay there very long. At all.

Dark Wonderland

2010-03-22T17:40:00.000-07:00

Last week when I was transferring from my chair to a chair in the restaurant, it took careful planning and a couple of tries because my lower body did not want to move.

I've experienced this a couple of other times in my wheelchair.

What surprises me is that I'm not faking anything. My lower legs aren't working. I don't trust my quadriceps to hold me up.

I don't get a thrill that "oo, look at me, I am what I want to be" because I'm concentrating on the situation at hand.

Those moments of struggle and plotting every move are as real as real can be. For one or two brief seconds, they have been alarming.

After it's over, I'm a little amazed that my mind is that strong. Because surely, that's what's orchestrating my lower body's non-cooperation.

No doubt it is my mind, perfectly willing to hypnotize myself into believing what I want to believe.

I don't know how to emphasize how real and how striking these moments are, how they go into a quiet internal space that I don't think my conscious mind has ever seen.

What, I wonder, is that place like? And what else is in there?

Maps Lie

2010-03-18T13:20:00.000-07:00

I went to a world-famous museum today, wheeling. I did my due diligence first. The blue badge parking lot was just here. The museum's accessible entrance, right next to it. There was an accessible ladies room next to the restaurant.

What the maps didn't tell me were that:

1. The blue badge parking was on a relatively steep slope. I wheeled down it, but it took extra help getting back up.
2. There is only ONE accessible rest room and it's faux accessible. I couldn't fit my chair into the stall.
3. The restaurant (which was very nice and very pricey) was at the end of another incline. One of the security guards came over and pushed me the rest of the way. Going back down was fun and I have to admit, I was very tempted to just keep rolling and maybe run over some people.
4. Unlike the NY Metropolitan Museum of Art that stocks all of its stores with the same things, this museum didn't. I mean that if, say, you see a book on Andrew Wyeth right outside a Wyeth exhibit, if you don't buy it there, it will be at the museum store. If you find, as I did, a couple of cute doo-dads and expect to see them at the museum store, you won't.

There was something about this trip that took a lot out of me.

For one thing, after awhile, I gave up telling people that I was fine and I didn't need any help, thank you. At least ten people asked me. Ten! And honestly, my shoulders and hands were done. So at the end, someone could have wheeled me home and I would have been just as happy.

I was disappointed at how much the maps lie. I know they don't lie at the Metropolitan Museum, having gone there and rented a chair. And I didn't need anyone to push me anywhere.

I'm taking some Aleve. And then I'm taking a nap.

In Retrospect

2010-03-14T07:12:00.000-07:00

Despite what I think most of the time, I really have been fortunate in my life. My physical maladies and injuries have been few. I have no lingering health problems. I think it makes doctors angry that I can be so overweight and yet be so healthy.

I've had the usual scrapes since childhood. A broken foot. Badly sprained ankles. Some cases of road rash when I fell off my bike a couple of times. All in all, well done, me for not being more of a klutz and managing to be in the right place most of the right times.

There have been some close calls, though, some circumstances that would have proved painful, if not deadly. Or really, really inconvenient.

Four or five years ago, a friend had invited me to drive into the city with her to pick up her daughter and go out for dinner. I don't remember why I declined, but it turned out to be the night of a massive blackout in New York City. I think it took her until one in the morning to get home.

On 9/11/2001, I had been scheduled to be at my then-company's Wall Street offices for training. There was a change in my job duties, so the training was canceled two weeks before.

Then much further back, there was the impromptu trip I turned down with my parents. I was going to college in the Shenandoah Valley of Virginia. It was a gorgeous spring day in March. My mother was recovering from hip replacement surgery and she wanted to get out and about. Although they lived about two hours away from where I was going to school, they called me and asked if I wanted to go for a ride with them.

It was so tempting. Really, really tempting. But I'd done badly during my first semester and was working like mad to rescue my GPA. Despite how gorgeous the day was, even though at first, I said yes, when I looked at the stack of books on my desk, I knew I had to spend the day at the library, studying.

They called me four hours later. They'd been rear-ended by some drunk going 50 mph while they were going 45 mph. Luckily, my parents were unhurt, although I think it set back my mother's recovery a little bit.

The car wasn't driveable so they got my aunt to come pick them up and had the car towed back to town.

Later when I went home for spring break, I saw the car.

I saw where I usually sat. The drunk's car had pushed the trunk forward to the point where, if I'd been sitting there, I would have gotten hit hard (if not smushed). It would have hit me a little below the waist.

At the time, I thought, my legs would have been broken. My knees would have been smashed.

I think that would have been the least of it, really.

Set forward, who knows what would have happened to my mother?

And what damage would have been done to me? Specifically, my spine.

I'm grateful I wasn't in the car that day. The physical damage would have been the least of it. If I had caused injury or worse to my mother, that would have been nearly impossible to live with. If she had survived intact, what would have followed would have been years of unbearable dependency on them. My mother's attitude would not have been good.

The house they lived in was completely inaccessible. I know I would have wanted to go back to college as soon as possible, but would have found that campus inaccessible.

Now I would like to think, maybe it would have forced the issue sooner for me to be out on my own. Perhaps I would have moved to the West Coast, found a college there. And likely would have stayed there.

There are so many points in our lives where we don't realize that we're making a life altering decision. Taking this road or that, going for a Sunday drive or staying at school to study.

I wish there was a machine to let me see what that one decision, reversed, would have meant to me.

Closer

2010-02-26T04:53:00.000-08:00

Since I was five, I have known what I wanted to be and how I wanted to look. Despite literally having dreams about it, I put it aside. I did it very effectively, too, because it remained mostly buried for decades.

I wanted long leg braces. I wanted black ankle boots. I wanted a wheelchair. I wanted forearm crutches. And yes, I wanted the disability to go along with it.

Again, I tamped it all down, knowing it must be impossible.

And what a painful thing to learn that it was possible, but financially out of reach.

Within the past two months, I have found and brought home the wheelchair and the black ankle boots. The boots are unbelievably perfect. And I'm saving them for special. I already had the forearm crutches. I bought a pair of orthopedic shoes from a thrift store and found it was possible to create about a 2" difference in height. Walking in them with the forearm crutches was so good. So much closer than I ever dreamed.

Lately, I'd been concentrating on getting an AFO, preferably a right AFO to guard my weak right ankle.

And suddenly, I am the owner of a set of AFOs. They are home made, but passable.

I am learning to maintain and repair the chair. I know what adjustments I need on the forearm crutches, which again, I do myself. All of this is changing me slowly, changing who I am and how I think.

I look at curb cuts in a completely different way now and am surprised at how many of them fail to meet muster.

Double doors are an annoyance of larger proportions than I'd realized.

I'm getting closer.

I doubt I'll ever get all the way to where I want to be, but getting closer is the important thing for now.

First Wheelchair-related Injury

2010-02-13T05:46:00.000-08:00

I managed to get the chair un-frozen. And I learned that I could wheel around in my house on one caster with little problem.

I'd seen a couple of nifty You Tube videos on popping wheelies and while I had done one accidentally last Sunday, I decided I needed to master them.

I wheeled over to an empty area of the living room, managed a wheelie and promptly landed on my back. I also hit my head on something relatively hard. It turned out to be the basket with all the cat toys in it. Ow. I mean...ow.

Using my injured head, I decided to try it against something softer - like the couch. Much better.

I wouldn't say that I've mastered the wheelie but I've got a good start at it.

Grounded

2010-02-12T18:15:00.000-08:00

Unless some minor miracle occurs, there will be no flying around for me this weekend.

Mechanical failure. It's a bitch. I have 1 1/2 casters on my chair.

And this is very embarrassing but my folding chair does not want to unfold. It spent this past week in the trunk of my car and while it didn't get jostled around very much, I wondered if it could have frozen shut. It's been in the house for hours now.

I knew it would be futile to go out in the mainstream looking for that very peculiar six-sided bolt that holds the caster into the prope

r position, but I did give it a try. Truthfully, I want a few spares of the caster-holder-onner assembly.

Of course there are lessons to be learned everywhere and I have learned a couple of things here.

One is that wheelchairs are very complicated machines. If you're going to ride one, you need to know how to maintain it.

Another is that I'm never going to be out without some little toolkit with me.

I will likely spend the weekend trying to find out if any of the wheelchair supply and repair stores around here are open on weekends.

But first I've got to be able to get in the chair.

Another Scream in the Night

2010-02-10T06:04:00.000-08:00

At exactly 1:38 this morning, some mysterious and formless assailant crept into my bedroom, grabbed my left leg and stabbed me repeatedly with a stiletto. Every muscle in the back of my calf bunched and it felt like the stiletto was twisted around and around, like winding spaghetti onto a fork.

Without being aware that I was doing it, I started to scream. I have quite a set of pipes on me. I screamed while trying to get out of the bed, out of the sheets wound around me, away from the cats that just didn't understand the disturbance.

I finally made it out of bed and saw that my heel was pulled up and back about three inches. I stopped screaming, but each time I tried to gently stretch out the spasm, it went back into that fist-sized knot.

This is the leg I hurt last summer. My first wake-up-screaming episode was in September, 2009. This was only the second one, but I have to say, I'm not a fan. I wonder if there's some sort of scarring on the muscle - not that I even know that this can happen - and wonder if surgery could keep it from happening again.

Weirdly, I would be afraid that the surgery would go awry somehow. And hope that it would, somehow. And at the same time, realize that were my perverse wishes to come true, these muscle spasms would likely be a part of it.

The screams in the night bother. But they don't.

Warming the Hearts of Do-Gooders Since 10:30 EST

2010-02-07T10:05:00.000-08:00

When I put the chair together after it was shipped to me, I looked at one of the casters and said, "That's probably not on right."

I was right, but it took three trips to the outside world to find out for sure.

The good news is that I have found the perfect place to cruise. It's a mall, of course, and it has a bookstore on one end, but all the flooring surfaces meet my criteria.

I encountered my first do-gooder as I was going up the slight (slight? Really?) ramp to the bookstore entrance. My casters smacked against uneven pavement with dirty water splashing up on me. I nearly did my first wheelie and it was not intentional.

A guy pushing his kid in a stroller leapt forward out of nowhere and said, "May I help?"

After the third time I'd taken a run at the door sill and still hadn't made it, I said yes.

Somehow he got me and the stroller in the door. God bless. I really wasn't looking forward to getting the entire back half of me drenched in filthy water.

I went to the posh food court and got myself a tasty early lunch. Twin girls turned around and looked at me. They were Asian and looked to be about the same age. One was fascinated by me. She was about three and was all staring wonder. Cute kid. Seriously.

On my way back through the bookstore, I picked up a copy of Pride and Prejudice (and thank you, no, I do not have a copy of Pride and Prejudice. Thank you very much.) and as I was cruising against a far wall, I felt a weird "ka-chunk" and the chair pitched forward and to the right, nearly pitching me out. I dropped my gloves, my sunglasses, my Visa card and laying on the floor next to all of this was one of the bolts that held the caster on.

I think this is when I dropped the f-bomb. It might have even been the m-bomb f-bomb. I straightened myself up, put the remaining stuff in my lap onto a bookshelf and tried to reach the stuff I'd dropped.

Here I began muttering and a woman asked, "Can I help?" I rolled my eyes at myself, just annoyed as hell at me, and said, yes, I did. She handed me the stuff from the floor, I thanked her and she moved on.

I sat there for a moment, pondering my situation.

I checked underneath the chair. The caster was still on, although pointing backward. I tried to balance and found if I kept my weight to the back and to the left, and moved very slowly, I was okay.

Finally at the check-out counter nearest the door, I dropped my gloves again, tilted forward perilously and the store clerk came around to ask me if I was okay and handed me my gloves. If I could have safely done an "oh, f- me," face palm, I would have.

I got to the door, my chair lurched again, but I knew I was okay going out. I just hoped I didn't pitch face forward into a pool of filthy water. The dean of the Physics department at Princeton rushed up. "Can I help?"

Not unless you've got a toolkit in your trunk. His sons watched me pass.

I went across to the parking lot verrrryyy slowly. I stopped traffic. As I approached my car, a very snazzily dressed older Russian woman called out, "Kin I hilp you?"

"No, no. No. No, thanks. I'm fine."

"Are you sssurrrre?"

"Yep. Yeah. I'm fine. I got it. Thank you."

A pregnant pause and then she shouted, "You are hheeeerroe!"

Oh, f- me. Now I'm a hero.

I managed to get into the car without requiring a dozen people to run to my aid.

Well. Ahem. I guess my good deed is done for the day. I made at least ten people feel good about helping me.

And I'm an f-ing hero.

Ha.

Limits to Mobility

2010-02-06T06:06:00.000-08:00

I'm at home today and likely will be tomorrow, too. Where I live is smack in the middle of Snowmageddon. There are about eight inches on the ground right more and probably at least another four to come.

My wheels likely would not be happy in this, any kind of wheels.

But here's something else - I probably couldn't wheel today. I have arthritis in my right hand that is normally managed down to annoyance level, but today, it hurts all the way up to my elbow. I've also got some kind of strained or pulled muscle in my shoulder. All told, I can't do much with my right arm at all today.

These things happen. There are some days when you have no choice but to stay close to home.

Concerning Doors and Floors

2010-01-30T03:59:00.000-08:00

Oh, right, like I could wait until Sunday to do this again. Actually, considering my weekend schedule, Friday night looked like the best time to go for a spin.

What I had forgotten was that on Friday night, the mallrats come out in force. They travel in packs and their movements are unpredictable and erratic.

Weeknights, then, would be a good time to go out and about.

Regarding Doors - Everyone Wants to be Galahad
The doors for Anonymous Mall aren't great but they aren't terrible, either. There's a wheelchair entrance of one door, with the big square button to push. The sills aren't raised. It's easy to get into. The Anonymous Bookstore, on the other hand, is a stone bitch. Yet, I managed. I had to leave the mall to get into the bookstore.

Honestly, the only attention I pay to people is to make sure no one is darting in front of my path, which would end badly for both of us.

But as I approached the bookstore's doors, two guys ran ahead of me to get the door for me. While I appreciate the gesture, it isn't necessary. I grabbed the first door, shot through it and as someone was getting ready to hold open the second door, I opened it and used the door jambs to shoot on through. I heard a disappointed little "oh" behind me.

"Got it, thanks," I called over my shoulder.

The same thing happened as I re-entered the mall.

But the worst door, the almost insurmountable yet most vital door, was the one leading into the ladies' room. I'm sure it has to open inward to the bathroom to meet some kind of code, but the way this one was positioned was just a pain.

Otherwise, no problems.

Floors
Ceramic tile = Evil.
Padded carpet = Evil.
Unpadded carpet = Better.
Plain old floor, such as linoleum or wood = Whee!
Smooth cement = Watch my dust.

But you probably already knew that.

First Flight

2010-01-26T15:26:00.000-08:00

I had the tricky part of the chair fixed at a bike shop. The guy was able to get the seat back into the right position. I think he was initially a little freaked out about it, but after a few minutes, he was just working on machinery, which made him happy.

He was fascinated by the quick release pin for the wheels. I also think I put the casters on wrong, but that's another adventure at a later date.

For the past three years, I've known exactly where I would head the first day I had my chair: the Anonymous Mall. No one I know goes there because it's out of the way and a bit down at heels.

The parking lot was full.

I lucked into a spot relatively close to the book store I wanted to go to. I got the chair out of the car, assembled it, and got in. I closed the trunk and set off slowly.

What I didn't realize while it was happening was that I had to go up a slight incline to get into the store. There were double non-automatic doors with raised sills.

Every middle-aged woman in the book store rushed to the front to open all of the doors for me at once. I said thank you because I genuinely needed that bit of assistance. So. Thanks.

In the store, I took a minute to orient myself to being in an unfamiliar store and at tush height, no less.

I picked out a couple of books and wheeled over to the cafe area. I was already jazzed up/borderline manic without making it worse with a cup of high octane coffee, so I just wheeled up to a table, scooted over one of the chair, and thumbed through my books.

There were a couple of things I learned.

One is energy conservation. I was in the middle of the store and wanted to look at cookbooks. Instead of drifting all over the place, I asked a sales clerk which direction to the cookbooks and she pointed me on my way.

I haven't the least idea if anybody stared at me, nor do I care. I was more concerned about getting from point A to point B without falling on my face. When I left the store, I was feeling considerably more confident and I bulled through the doors. "Oh wait," one woman said, chasing after me,"I'll get the door for you."

"Got it, thanks," I called over my shoulder.

And then I zipped down the slight incline and began to feel what my cadence will be like when I wheel longer distances. It takes some experimenting to get into the groove. To find your own particular groove.

I got into the car and thought about how odd it was.

When I was in the chair, it was as if my legs and indeed, anything from my hips down, didn't exist. I didn't expect them to do anything to aid me in my travels.

Getting in the car, it really was a bit of a struggle. I sat and looked at my legs. I said, "All right. You have to work now." And after a few minutes, they did.

When I got home, I thought, that was interesting but I don't know if I ever have to do that again.

Today, I started planning a trip for Sunday.

Mine

2010-01-20T15:09:00.000-08:00

It's sitting in my bedroom, the Quickie 2 wheelchair that arrived yesterday. I put most of it together, but not being mechanically-minded, I was stymied by one back post. I'll deal with it later, but want it dealt with by the weekend.

Because yes, that's when I'm taking my first trip with my chair.

My chair. My wheelchair.

Although one of my cats would disagree...

I was mortified to find that it is a bit of a squeeze to fit into it, but tell myself this should prove an incentive to fit into it better. (We don't say the "d" and "e" words here, although we think them, frequently)

And it's mine.

Someone had loaned me his for a good long while, but I thought I was keeping it in storage for him. As such, I didn't regard it as something I could play fast and loose with, although I did roll around the house a little bit with it. There was something about that chair - I never felt comfortable in it.

This one, I do. And we will begin our adventures together very soon. Stay tuned.

The Fever

2009-12-31T15:25:00.000-08:00

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

2009-12-19T15:18:00.000-08:00

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

2009-12-05T08:21:00.000-08:00

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

2009-09-28T18:12:00.000-07:00

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

2009-09-26T04:59:00.000-07:00

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

2009-09-24T19:07:00.000-07:00

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

2009-09-19T17:40:00.000-07:00

...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

2009-09-19T11:20:00.000-07:00

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

2009-09-12T13:53:00.000-07:00

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?

2009-09-07T13:06:00.000-07:00

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

2009-09-05T13:01:00.000-07:00

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

2009-09-04T03:52:00.000-07:00

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

2009-09-02T12:15:00.000-07:00

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

2009-08-28T05:42:00.000-07:00

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

2009-08-24T15:41:00.000-07:00

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

2009-08-16T15:13:00.000-07:00

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

2009-08-15T05:16:00.000-07:00

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

2009-07-23T14:59:00.000-07:00

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

2009-07-09T09:01:00.000-07:00

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

2009-06-28T07:11:00.000-07:00

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

2009-06-22T14:29:00.000-07:00

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?

2009-06-02T08:29:00.000-07:00

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

2009-05-21T05:28:00.000-07:00

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...?

2009-05-17T15:26:00.000-07:00

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

2009-05-12T06:29:00.001-07:00

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

2009-05-06T11:45:00.000-07:00

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?