Abilities Expo

This is the kind of day where I sacrifice a piece of my sanity for political stability. The Abilities Expo occurs every weekend in different parts of the country. The event showcases assistive technology on driving, wheelchairs, home care, magazines and just about everything under the sun.

The day was planned last month. My mom wanted to visit the event. So did my father. The situation helps me because they become educated about what’s available and what’s useful/useless. Knowledge breeds rational conversation so, on that point alone, it was worth the trip.

My parental units are overly concerned about how “old” my van is. It’s 10 years old and works perfectly, thank you. That, of course, didn’t stop them from going to the Dodge Caravan guy and telling him I’m in the market for a new vehicle. Nevertheless, it was a good opportunity to indirectly explain why I will never, ever get a Dodge Caravan. I need a lift. They have ramps. Ramps are fine on perfect days but most days are not perfect. They might be wet, dry or humid. Nor am I perfect. I get tired after long days like everybody else. I don’t feel like sleeping outside my vehicle because I can’t get in.

Next stop was the “wheelchair assist tires” only because I don’t know the exact name. They scare the crap out of me. Basically, these are wheels that provide a boost of power when touched. The idea is to allow weak wheelchair users to save money by keeping the manual chair and putting some power behind it. Proper power wheelchairs start at $10,000 so it’s a rational business idea. It’s just not rational for me to have two loaded guns under my ass ready to throw me out of my chair from the slightest random move. I can do that just fine already.

I was explaining this to my folks as we approached the booth selling the wheels. Naturally, they wanted to see it for themselves because maybe I was speaking in hyperbole and overstating the real danger.

I had no better demonstration of my argument than what the salesman did in the next moment. Just as my mom asked, “Are these the assistive wheels?”, the salesman got happy in an affirmative reply. He placed his hand on the left tire and the chair did a wide right turn crashing into the back wall. I smiled. There’s no way I’m touching that stuff. “Oh. I see.”, was my mom’s response.

The salesman recovered well enough and started pushing his product. When you screw up, just start looking for problems in your potential customers to change the subject. Apparently, it works. He began to critique my wheelchair. He noticed I use mag wheels and disapproved of my admission to using airless tubes. According to him, if I do what he does, I’d have a better wheelchair experience. That means 90 psi tires, spinergy wheels, etc.

Here’s a clue for my loyal blog groupies: if a dude has an aluminum shell back, no armrests, no push handles, and other nonstandard custom features like a cellular phone holder, he probably knows exactly what the fuck he’s doing.

So I smile and defend my choices. “Air sucks.”, I respond. “I don’t have time for the danger of low air pressure. I prefer to stay in my chair instead of being sprawled out on the floor.”

“Well, they sell portable pumps for the car.”

The only pumps I want to see are usually the only thing a stripper never takes off. “Too much hassle.”

He seemed to get the picture. “Well, it’s about choices.”, he said. “But you really should get rid of the mag wheels.”

“I will rip spokes out just locking into my van.” Undeterred, he showed me his wheels–incidentally, they are not powered–which looked interesting enough that I’ll definitely consider them. He then followed up with another good suggestion for rough vinyl handrims rather than the smooth ones I currently own. He did a fair job. I was glad to chat with him.

We then moved to the Frederick’s Ataxia Foundation table. This dude severely tested my patience. I managed to make it through the entire summer without wanting to punch somebody squarely in their f’n mouth. I guess it’s not summer anymore, right?

This is the kind of situation where my Buddhist preaching gets directly confronted and tested. I claim to keep my breathing constant regardless of circumstances to maintain emotional balance. I try to keep the banter going in a Socratic dialectic style in hopes that the other person picks up on the fact that they just said something stupid. I try to simply ignore comments if possible.

I managed to back up all my talk today but that didn’t make it easy.

First, let me explain what Frederick’s Ataxia is. Frederick’s Ataxia affects the optic nerves, dorsal columns of the spinal cord, corticospinal tracts, and the cerebellum. The progressive degeneration results in secondary problems like a weak heart and mild retardation. In English, you are completely fucked.

Frederick’s Ataxia is some pretty serious stuff. It’s the most widely diagnosed neurological disorder and, by extension, the choice for weak, confused doctors that don’t want to say “I JUST DON’T KNOW.”

Frederick’s Ataxia is genetic, meaning it can be passed on. Now, with that in mind, let the google god broadcast this to the whole world: I do not have Frederick’s Ataxia. No doctor or physical therapist I’ve ever worked with believes it. My earliest diagnoses even doubt it. Other possibilities are mentioned but even those don’t work. As it stands, I have a “severe peripheral neuropathy.” That means everything at the extremities is in bad shape but the closer you get to the torso, the better things become. There are no vision issues, no mental issues, no circulation issues, no sexual issues and no genetic issues.

I have had FOUR genetic tests. Somebody in a dark underground laboratory somewhere has enough blood to clone me, get it right and create an army of hyperintellectual, strategic mastermind, evil warlord, Don Juan-esque Tae Kwon Do black belt coders. What are you going to do when four different kinds of tests looking for a genetic culprit all come up negative?

You are going to forget about it and find something else to do.

There was a time when I worried about this. I said not-so-crazy stuff like, “no kids. This bullshit dies with me.” But now? To hell with that concept. There’s nothing there.

The Chris Uzal World Tour is on. Before I leave this planet, I’ll have 79 kids in 23 states.

Now back to our friend at the Frederick’s Ataxia table…

I got some bad vibes while my mom was explaining my situation to this punk. Before she could get to,”… but after testing, we don’t know what it is.”, he started on his foot-in-mouth acrobatics.

“I was 19 before I had any symptoms.”, he said. “When did you start getting symptoms?”

I already knew where this was heading. We were about to endure the story of his tragic life. I shot straight. “From the beginning.”, I responded. “I’ve always been the black sheep.” I might as well have said, “donuts are delicious and nutritious” for all the response it got. This was a one way street.

“Really? That’s odd.”, he said absently. “My brother was 13 when he got it.”

“Whoa.”, I said. “That isn’t good.” I have two beautiful, healthy and happy siblings–an older sister and younger brother. Neither, thankfully, share my karma.

“It’s genetic.”

“I’m aware of that.” I said in a matter-of-fact way. My mom mentioned that she wants to get more genetic tests just to put the issue to rest. That’s where the shit began.

“You don’t need to get a genetic test.”, he said.

“Excuse me?”, I just wanted him to extend his thought.

“You both have it.”, he said pointing to both my parents. “It’s a recessive gene.”

I don’t know if my mom caught what was happening but I could feel my father getting agitated. “Did you hear that?”, I said to my folks in a banter style. “You’re both at fault.” In that same breath, I was imagining rolling right up to him, locking his head and throwing him to the floor. This fucking jackass was starting to get personal.

“You are assuming that I have Frederick’s Ataxia.”

In that moment, I recognized my rising anger. I was in front of a pale, pasty, confused and possibly deeply unhappy person. People do stupid stuff under those circumstances. I had to quietly remind myself not long ago that my Buddhist views would be challenged and possibly ridiculed if I wasn’t careful in keeping the cluebat nearby. In this situation, getting away from this guy was the best solution. I’m familiar with what I suspected his mental state was and I know that there’s only one person that can save him from himself. That’s him. I’ve got no time and an entire convention to visit.

“But if I were to see you on the street, I’d say you had Frederick’s Ataxia.”

Good grief. Time to GFO.

I think my father knows when I’m starting to approach volcanic so he ended everything with a quick, “Thank you for your time. Have a nice day.” About face. On to the next booth.

The rest of the event was, thankfully, pleasant and enjoyable. I passed out the resume to some nice government employers. I got to play with an $8500 standing wheelchair. Very cool stuff. I will get one eventually. I saw a Segueway for the first time. Those are incredibly cool. At the top of the cool list was a Chrysler PT Cruiser tricked out James Bond-style for disabled drivers. I had a great chat with the conversion van people in their $40,000 model.

I even tried out a $7000 power/manual hybrid wheelchairs and basically rolled around the place like a loose cannon. That was an experience. I can’t believe I didn’t damage anything or kill anybody. I managed to learn how to control it well enough that I pulled up into the Dodge Caravan on display.

Naturally, the salesman wanted to see what I was up to. “Hey, it looks like you are ready for a new conversion van after all?”

“I can definitely consider one now at the very least.” And that was true. That’s what this convention is about. Possibilities. Making the present easier. Making the future brighter.