Lucky Me

Over the past week, I realized how lucky I've been in venturing into the world of BIID. Of accepting myself as a person with BIID, and ways of dealing with it and not dealing with it.

Even though my interest in leg braces, wheelchairs and polio goes back to the time when I was four or five years old, it wasn't until only five years ago that it dawned on me that I could search these things on the Internet.

I've been known to fling myself into things far more often than I should. Uncharacteristically, I sat back and took my time, absorbing things very slowly.

When I came forward, it was as a dev.

I had some unfortunate experiences as a dev. My usual sense of caution about certain things failed me and I was very nearly taken several times. "Taken" as in, nearly spent a lot of money I couldn't afford. "Taken" as in, believed people that had given me no real reason to trust them.

That phase didn't last very long.

Nearly from the beginning, though, I was fortunate in some people I met. I met people who not only accepted but welcomed my dev side but slowly helped me accept BIID.

I had people to chat with online. I had people to email and bounce ideas off of. And one relationship has gone to a very nice, comfortable place.

I've recently encountered someone who is acutely aware of how alone he was for over twenty years. That's a terribly long time to be alone, to harbor what seems like such a burden at times all by yourself. It's made me realize how fortunate I've been in a number of people I've met along the way.

As for people who knew me before the BIID awakening, I've told them very little. A close friend who has a disability, thinks it cool that I'm a dev, but she doesn't know I have BIID. I don't think she would react favorably if I told her.

I've told my therapist and my psychiatrist and they both obviously recoiled. My shrink is convinced it's related to OCD. I've given him websites to visit and contact information for his peers who are knowledgeable about BIID. I don't think he's investigated it, because the last time I spoke with him, he was advocating increasing the anti-OCD meds. My therapist thinks it's a very, very bad idea for me to obtain a wheelchair. Obviously, I'm not getting the support I want and need.

While I continue to search for a p-doc to help me deal with BIID, I'll see the one I've been seeing. The therapist has helped me with other issues in the past. Aspects of these issues pop up from time to time. Some of them might take a lifetime to resolve. In the meantime, I'll keep searching.

So...thank you to the people who have helped me get to this point. It's a very important point in my life, I think. Thank you for not rushing me. Thank you for letting me take my time. And thank you for welcoming me with open arms and minds when I got to this point. Your input, your friendship, your love and acceptance means so much to me.

The Education Continues

I took another trip this week. I met an internet friend for lunch. Not only does she not know that I have BIID, she has let it be known that she loathes anything that has to do with dev-ism. Her late husband was severely disabled by an injury after they had just found each other. When she found out people could be turned on by what was a tragedy to her, it lit a flame that still hasn't died.

After lunch, we went shopping. I had a full tank of gas in my car, so volunteered to drive. Of course I had to clear out the front seat and there among the old coffee cups and half-empty bottles of water were my crutches.

I took them out to move them to the back seat and she looked at me. And she looked at me. "What are those for?" She pointed at me.

"What are what for?" I held the crutches in my hands but had no idea what she was talking about.

"Those." She pointed a lacquered fingernail at the crutches.

"Oh. My legs hurt sometimes." And it's true, they do. I have very minor medical issues with my legs. When it acts up, walking can be unpleasant.

I'm sure I'm probably projecting this on her, but I saw a little frown cross her forehead. Not of disbelief but of believing that I hadn't told her the truth. Was it something other, something worse? And what, she might have wondered, could make your legs hurt so much that sometimes you need crutches?

Well. How about multiple ankle sprains on both ankles to the point that doctors have been prodding me for a couple of years to have surgery on them to bring the bones back into alignment? How about muscle pulls and tendonitis? Put it all together and it could make for some less than spritely days.

I told the truth. And I don't think she believed me.

Not my problem.

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On my way home, I stopped in a quaint old town that I like. Because I was still close to my luncheon companion's home base, I didn't crutch.

But I realized that as a wheeler, this town would be virtually inaccessible to me. All the charming little store fronts have two granite steps in front of them, each about 4" - 5" tall.

-----

My crutches don't fit. Surely it's not right that they bruise my forearms? I have no idea what to do about it.

-----

I finally get the "You help me more by not helping me" thing.

While on the road, whenever I stopped, I crutched. And had five people falling all over themselves to help me.

I came to some conclusions. You probably already know this.

1. You help me more by not helping me. If you rush in front of me to open a door I can open, I'm at risk of losing my balance. That would not be pretty. For anyone. Then you'll really have to help me and you don't want that, trust me.

2. If I'm slower than you - and I am - go around me. One of my favorite poems has the refrain "I have my own velocity." And I do. I'm on my own speed of cruise control and I'm in the slow lane. Go around me.

3. I am fine. I have been fine all my life. I am fine now. Do not, for the space of even a few seconds, take it on yourself to be my protector, my very own rest stop Galahad.

4. To the snotty little girls at Starbucks, you were more interested in talking to each other and giving me attitude than to do what I asked - which was simply to close up the little hole in the top of the lid and give me a bag for the coffee cup. Do you see my hands? Do you see that they are occupied? No. Just give me the bag and no one gets hurt.

5. Take a picture, it lasts longer.

And I have no doubt that in months, years to come, there could easily be photos of me circulating on the Internet. Don't do that. It's demeaning.

----

And so the education continues.

This Cherry Is Definitely Popped

Despite my one-crutch / wheeling trip to NYC this spring, I still didn't consider myself "out" as a pretender. After all, it was only for a morning, it was deliberately someplace where chances were extremely unlikely I would run into anyone I know. I even took a specific train line into the city to avoid all chances of running into someone.

But now, the cherry is definitely popped. And I don't know why this time seems so different and...so profound in its way. But that's how I know I'm not a virgin anymore.

This week, I went to a summer town on the Atlantic beaches. The chances of running into anyone weren't important. I chose the particular place because I was familiar with it. And the weather lately has been gorgeous.

All the disabled parking spaces were taken up. (I still have a temp permit through the end of this year.) I got my forearm crutches out of the backseat and stood up.

The weirdest thing happened. My body instantly believed that my legs wouldn't hold me up. My shoulders believed it. My legs believed it. I said, "Whoa!"

And then I set about learning a number of things you may already know. Maybe this is why I consider myself to no longer be an innocent.

I learned that what's usually a very easy walk for me unaided can turn into a grueling fifteen minutes, walking what I would normally cover in maybe three minutes.

I learned that the pseudo money belt I had on was a perfect thing to carry. A light backpack would have been good, too.

I learned that my zest to walk to the end of the boardwalk to the inlet went away pretty quickly. All told, I must have covered a whopping two hundred yards.

It didn't take long on that sunny day to wish I had a set of fingerless gloves. As unladylike as it sounds, my hands sweat.

Interestingly, I found myself pushed into getting healthy food for myself. All of the regular places along the boardwalk didn't have any place to sit. Or if they did, it was of the "you order it, you bus your own table" variety. I wasn't going to ask someone to schlep my stuff over for me and I wasn't going to let a slice of primo Jersey pie slide off the paper plate as I tried to carry it to my table.

I ended up going into a restaurant, to the second floor where there was shade and an ocean view. Yes, there was an elevator at the back of the restaurant. When I went up to the guy who was doing the seating, he looked perplexed. And then he started making kindly-meant suggestions.

"You know," he said, "I used to travel for a living and I always used to sit at a table. But then I started to sit at the bar. No one bothers you. No one looks at you because you're alone."

I laughed. I've been mostly alone for the past ten years. One of the quickest things I forced myself to get over was feeling odd when dining out.

And suddenly, I said, "I'm sorry. I need a chair. I can't sit on bar stools."

His face dropped.

And I have no idea where that come from. But there it was.

He patted me on the shoulder. "Sure, sure," he said. "I understand."

I highly doubt it, I thought, as I made my way over to the table. The table that faced a brick wall.

"Here," he said. "You're in the shade."

But there were other tables in the shade that didn't have me with my face to a brick wall. Hm.

When the time came for me to order, I uncharacteristically ordered a salad. Hey, I thought to myself, if I end up hauling this body around on my arms, it would do well if there were a lot less of it.

A couple was seated behind me. They moved. I don't know why.

The salad (delicioso) came out, but it was on a weird glass plate that spun around every time I tried to take a bite. Croutons were flying everywhere. And I realized my left hand was shaking so badly, I could barely hold the fork.

Doing something wrong in the crutching technique, I thought. Made a note of it.

Meanwhile, I waved down the waitress. "Could you put this on a bigger plate, please? I'm just getting it all over the place."

"I'll go get - " she said and I stopped her.

"I'm sorry. Could you please put it on the bigger plate?" I sat on my hands.

She came back with the salad on the bigger plate.

And finally, I was able to relax, enjoy the seaside atmosphere, the warmth of the sun, the confusion of gulls. I watched kids throwing a football on the sand and watched one kid plant face first into the sand. Ouch. But he got up, found the ball and tossed it back.

There were about ten perfect minutes there. It was lovely.

I tipped the waitress well, paid my bill, stopped into the amazingly accessible ladies' room, then got in the elevator going downstairs.

Once within range of the parking lot, I stood in line at the funnel cake stand. I asked if they could put the cake in a bag for me and they said sure.

I went to one of the benches facing the sea and carefully ate the greasy, sweet fried dough. Normally, I'd go for the whole thing, but again, I didn't want any more. Again, I thought of hauling this old body around.

I hoofed it back to my car and as I opened the door, I thought, this is over. I have to tell my legs to work now.

I found them reluctant to go along with the scheme. I put my crutches in the front passenger seat while holding onto the door frame.

How odd it was to pull my feet in, to position them on the floor mat and tell myself that they not only worked now, they had to work.

That's not right, I thought. There's something very wrong about it.

When I got home and stepped into my house, the same thing occurred.

This outing as a pretender - which felt like very real and not a bit like pretending anything - has happened and there's no un-happening it. And I'm glad.

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

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

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

I silently screamed, It's not OCD!

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

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

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

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

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

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

Songs

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

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

The first one is "Paint It Black."

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

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

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

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

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

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

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

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

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

Here's "High and Dry" by Radiohead:

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

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

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

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

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

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

Stay at Your Own Risk

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

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

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

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

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

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

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

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

Grrrr...

All The News That's Unfit to Print

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

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

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

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

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

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

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

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

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

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

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

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

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

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