You Know Who I Am

I've been to a couple of consumer and trade shows that deal with DME. I went to buy some new gear for my chair and also to check out that the chair back was appropriate for me (It is. All Nature rejoices.). I also went to buy some items that could help with pain because at the time I was dealing with pretty bad back pain.

There must be some secret code, maybe a secret handshake among the sellers, I don't know. Or perhaps I'm being paranoid. But one person in particular, I'm fairly sure he knew I have BIID.

Mostly, no one asks questions unless they're actually physically fitting and measuring you for a chair. When I was in the process of getting a new to me but used chair, I got some questions about the typical use I make of my chair and level of injury. (I only use it when I want to cover long distances. L1 due to a cycling accident which makes me sound way more badass than I am.)

There may be knowing looks. I have no idea if these guys go back to the hotels around the convention center and exchange stories. I suspect they go out for a couple of drinks, some dinner, then fall into bed because they know tomorrow is another day or tomorrow is another day when they have to schlep everything back into various trailers.

They may know who I am, but they don't call me out on it. Because I am jaded, I think it's because my money is as good as anyone else's, including Medicare.

Out and About

Because of some physical therapy I had to address another issue, I'm finding my upper body strength is increasing. This is good. This is very good. There have been some situations that I've been able to power through that I haven't been able to before.

I need to go out more than I have, but have to admit I live in a very inaccessible part of the U.S. If a wheelchair became a daily part of my life, I would head west or at the very least, head someplace where most things are new. And fairly flat.

I know a lot of people complain about getting too much attention when out in their chairs. I've heard that people say rude things to them. This has not yet happened to me. A woman who was coming out of a store held a door open for me and I told her she'd better move unless she wanted her bare toes rolled over and we both laughed.

But no, no one has come rushing to my aid. I'm figuring this out. It's working.

I've spotted a couple of people who looked like they were just about to come rushing over when I turned around and got myself out of whatever small jam I was in.

Kids notice me because I'm at eye level. Maybe a couple have been pulled away from me. I have no objection to that because I don't particularly like children.

But sales people leave me alone. I like that. The most I ever buy when I go out and about is a snack and the clothing stores I go into have beautiful clothes that range from sizes XXXS to M. I am XXL, so it's all just so much window shopping.

I feel about this invisible in my everyday life. It doesn't bother me.

I wonder how it would be if I was with another person. Would that attract more attention? Is it so unusual to see someone in a wheelchair alone? I think it must be, because I can only recall one time when I saw a guy in a wheelchair by himself. (He was crossing Times Square on an autumn evening.)

No. No more invisible than usual.

But it was good to be out and about. I have to do this more often. Much more often.

This Feels Like Hope

Recently, I've read a few scholarly papers and seen some YouTube videos about BIID. The more I read, the more likely it sounds like it's going into the new DSM next year. That means that it's recognized as a real thing. And if it's real, there can be attempts at treatment.

I have no doubt that the pharmaceutical companies will set up protocols for drugs that already exist. Because we are, at the moment, known to be a small population, I wouldn't expect that there would be a great wave of companies out there trying out their old antidepressants for a "new" illness. Besides, we already know they don't work.

At my age, (late 50s) I realize that surgical treatment will not come in my lifetime. I'm okay with that. And no, I am not willing to pay tens of thousands of dollars to find that surgery elsewhere.

My first small hope is that there would be an experiment - I know, a very non-technical word and no doubt a little off-putting - for people needing paralysis. I would gladly volunteer for nerve blocks on the sciatic and femoral nerves.

To get my legs out of the way for two hours, while I'm awake...I can't help but think it would allow me to focus on something other than that. The buzz is always in the background, except when I spend a lot of time in my chair. What a tremendous relief that would be.

Mixed States

I realize how long it's been since I posted here. Not much has changed.

A lot of things have happened.

I'm going out in my chair more but it still isn't a lot. More on that later, maybe. Today's particular kvetch is a spillover from my mainstream blog. A friend of mine has invited me to lunch at a very nice place with very nice gardens. It's a two hour drive away. She's going to drive. In her convertible. In her teeny tiny Mercedes convertible. I was just diagnosed with my second round of skin cancer - very minor, but still, surgery is scheduled and I'm not looking forward to it.

There is nothing at all about the convertible experience that I cherish. The wind, the sun, the hair all over the place thing, the wind, and the sun. Not to mention the fact that my friend comes in size XS and I am XXL and she naturally chose the car to fit her and not any of her passengers. I am sure that all will be well once we reach our destination, have our meal and wander the gardens and then again when I return home.

Tina is one of the few people in my real-life world that I've told about BIID. She showed enormous intellectual curiosity about it when I first mentioned it to her and I've told her to feel free to ask any questions. One of life's many ironies is that Tina owns a wheelchair van. She is perfectly able-bodied but her late husband was paraplegic due to illness in the last years of his life.

She has a hard time getting rid of things. The few times I've seen it in her driveway, I've cast longing glances at it. I've considered asking her if I could buy it, but I honestly don't have the cash and again, she has a hard time letting go.

This is not the weekend that I had in mind for myself. I have my chair in my car and I knew where I wanted to go. I may or may not have to opportunity to go out on Sunday. There is someplace deep where this all comes from, the unsettled feeling I have. Perhaps that's what it feels like when things begin.

Public Property

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

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

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?