SmartDrive, DumbDriver ---- by Rey Don'tsay, the Saturday guy

Happy Saturday folks.  I hope life is doing you good.

     I have a few tales I’d like to unload on ya.  It’s hard to know if things are too personal.  Before my paralysis, I was different in what I wanted to share with the world.  I was more closed, private.  I feel much more free-er in ways now.  Loose.  For better or worse.

Ain't me. I use lower cliffs.

     There’s a person I interact with at the hospital.  He’s very kindly.  He tends to walk with me sometimes in the hall, using his walker with a little seat shelf on it, but I've never seen him sitting in it.  You’ve all seen one.   I stroll, of course.  And since I have a little motor machine that pushes my ‘regular’ wheelchair, called a SmartDrive, I try to match his cruising speed. It can be hard to control.

     Wheelchairs come in two basic overall shapes, though within these groups they can sure vary in style and function quite a bit.   When I say 'regular' chair, I mean that it’s the standard hospital type wheelchair design with 2 big wheels, a footrest, and handles to push the poor injured folk around some.   And there are also the motorized chairs, some quite massive, usually with controls attached or even handlebars and such.  I might have that in my future, but the people who tell me what I need don’t want me to move to a motorized chair.  They say that your general health gets worse in a motorized vehicle.  Maybe?  Who knows?  Every person is so individualistic in their functioning and their needs...it’s a tough call.

     I still have two mostly working arms and hands. So I get to push myself or charm others for pushes. Typically, I visit a super big VA Hospital for many many appointments, usually alone, as Cleo works and my family's not that near. I spend most of my days there bopping from appointment to appointment or trying to figure out the latest pharmacy screw-up.  I socialize with other poor saps in rolly chairs.  I’m even getting better remembering their names!!  We’re all usually both vets and disabled, and that’s like a different subgroup of the whole human macareña.

     Well, my mobility changed a few years back, when I was given a SmartDrive. It’s a little mechanized third wheel that can push my fat ass around.  Here’s a pic:

     I think there’s something a bit phallic about it, with a fancy black wheel attached, hey heeeey.  It’s got a Batarang as a handle, I guess Batman would be ok with it on his beaten-up days. It hooks up to a bar on the back of the “regular” wheelchair. Give it orders and off ya go.  You steer using your big side wheels like always.  There’s a little watch device.  They call it a PushTracker.  It uses Bluetooth that’s connected to the big heavy-ish newborn baby-sized machine to control the wheel. Annnnnd as you tap the side of your wheelchair twice (or almost anything twice), the Bluetoothy-watch registers it and sends instructions to the SmartDrive, and so, it will make it gooooo. It starts at a slow speed and gradually gets pretty fast.  Almost ramming speed, really.  You tap it once more at the speed you want as it’s moving and tap it twice more to stop.  It’s a bit unnatural and takes some getting used to.  Still, quite a bit of help on sickly and weak days getting around.

     I have a friend who's in a chair and also uses a SmartDrive and he tries desperately to bang my arm twice to make my chair lurch forward when I'm talking and not paying attention.  I think he was successful a few times but I caught myself too quickly for his taste.  I now power off when I'm around the cheeky b.

     The machine can peter out on long and steep inclines.  I’m not thin.  I try to be forgiving.  And if you hit some bumps or, say, the longish gap on some elevators where the door slides, if you hit them just ‘so’ you can bump the SmartDrive right off.  Once at an outdoor wedding on a small hill my SmartDrive flipped itself completely under my chair.  It took a minute or two to figure out why my chair got impossible to move.  It’s flipped under me three or four times at different times.

     I’ve taken out a few pairs of feet in elevators.  Smashed into countless things at speed.  One time, I crashed a glass door so hard that I don’t know how it didn’t shatter.  The watch-PushTracker thing has a battery that loses a charge quickly, so on long days at the hospital, I need a plug and the charger in my backpack to juice it up.

My SmartDrive did something weird with the little ramp I have on my doorframe and I fell backwards, banging my head and was stuck halfway in and out of my apt. front door.  I yelled and yelled for my neighbors to help, but it was a cold day and absolutely no one came by. I called the fire dept. for rescue and passed the time taking rare phone pics. This is my doorframe taken from the sill. 

   
     Another time, I forgot to turn the power off, and it was on a charger and plugged up to the wall.  I did NOT have it on my wrist!  I was in a small room full of people from my group therapy session (I’m the only wheelchaired one, yay).  The watch got bumped twice and my chair took off and headed across the room at an ever-increasing speed. I had other stuff on my lap like a backpack, a phone, an iPod, and a folder for group papers. I use a little lap-tray that fits around my chair with straps to hold my crap and write on.  It’s good for coffee and other drinks, but I’ve still managed to spasm or knock drinks off at my Mom’s house several weeks in a row one time.  Anyway, all that stuff on my laptop table went flying as I grabbed my wheels and tried desperately to stop.  I turned sharply to the left, in time not to crush those now-targets across the floor space.  If you hold your wheels still with strong grips (talk about a hand brake!!), eventually, you’ll override the program and it’ll stop.  Nevertheless. with all my stuff falling off as I flailed. and my chair popping forward out-of-control at missile speed, it was all quite a to-do, to say the least thing possible to say. I avoided hitting anyone but it was the closest of calls.  Sigh.  I detest spectacles that come from my differently-unabled self.


     Anywho.

     We have to go back now to my bud who I was walking down the halls with.  Ah Ah Ahhh. I rolled and he half-rolled on one of those walkers with a pair of small wheels. He can move fast on that thing.

     I have a hard time matching anyone’s gait with accuracy unless they compromise some. It was mostly ok. He adjusted.

     He said, “I still say we’re gonna see you walk again,” softly, but in his natural super-manly Barry White soothing voice.

     You see, he’s religious. I’ve known him a while. He does this a lot when we’re alone, and sometimes he pushes it out in front of others:  this declaration that I’ll walk again.

     He knows I’m not religious, but that doesn’t stop some religious folk.  He doesn’t understand how much it stings, how it hurts, to make such declarations to a person as broken as I am.

     He thinks he’s doing good, being hopeful.  Trying to encourage that hope, that goal in me.

     You see all the time on the news or on shows the paralyzed car crash survivors, the injured athletes, the wounded veterans who all OVERCOME their back injuries and find a way to at least walk and other miraculous endeavors. Yay? (Yeah, I’m jealous as all fuck.)  Most of the ones who can come back typically have injuries in one section of their back, or several sections, depending on their injuries.  Usually, small areas where the spine is broken.  They’re  the “incompletes.”  Doesn’t sound hopeful, but that means their injury is fixable.  These are the ones with hope.  Because there is hope. For them.

     But there’s a whole ‘nother section of invalids like me.  My “injury” is complete. COMPLETE.  It means “face it sucka, you’re screwed.”  My ‘injury’ was caused by a cancer tumor that grew and filled up my spinal column and handily crushed the all-important cord.  It took nine days or so.  Smushed.  Trampled.  Crushed.  For about a foot and some inches.  It was purple, the surgeons who removed it told me when I asked.   My favorite color.

     They hoped the cord would “bounce” back.  Bounce.  Like when you press something fabric or springy and it rebounds.  Mine was flat. Like a pancake. It was beyond the pale.  No bounce.

     And guess what the procedure is to decide if there’s any hope for you or not?  The head doctor of the Spinal Cord Injury unit, (It’s called SCI for short), the fancy part of the VA hospital dedicated to people like me where I transferred to from ICU, did this procedure and immediately, and I mean immediately, declared me COMPLETE-a mundo.  The head of the department stuck a finger, (maybe two, heck if I know) up my backside, and fiddled around in there.  Yep, kinda gay.  They, Head Doc and an associate,  looked for a reaction. A response.  I failed in my gayness. No response.  That’s low.  It was all so fast.  He said I was complete and unfortunately it meant it was all gone.   He didn’t make a show, but he made sure to be clear.  I would never feel, never get an erection, never walk.  I was paralyzed...completely.  I don't really consider it complete because I feel agonizing pain from muscle spasms.  Lucky me.  The paralysis 'line' is from a point a few inches below my nipple line, all the way down.  Well, that changed. In the following weeks, my paralysis line rose to a few inches ABOVE  my nipples.  That’s how we knew the cancer was still active and heading toward my brain.  To kill me, likely.

     I saw a documentary by a woman in a wheelchair who couldn’t move much.  She'd made a documentary about disability in the movies.  It’s pretty good.  When she was being interviewed she mentioned that in getting into an elevator while in a big wheelchair, it is the duty of the disabled person to ease the discomfort of the walking people.  It makes people tense to be around us.

     What the…?  Why?  Why is this my duty?  Heck. what about MY discomfort?

     This idea has been ringing in my head for a few weeks.

     The Head Dr was supposed to be my doctor.  Maybe because I was on the younger side for a VA SCI guy, they thought I’d have potential.  They do get occasional young guys from conflicts and war, but not many that I saw when I was there for months.  Most of the other veterans were older and many had back injuries from falls, quite a few from ladders, actually.  I remember one young guy I met who was shot accidentally in the back by his uncle cleaning a gun while he was on leave.  I think the bullet entered the side but was one of those that zip around inside a body and eventually hit his spine.

     My spinal bones are open all the way down. They don’t usually close them back up, I was told, because it can still be supportive just as it is. If you feel down my back you can feel two separate spine lines a few inches apart.  It’s different but kinda cool, I guess.  There’s a huge long scar in-between it.  I think they said 13 or 14 inches.  I don’t know. I can’t look.


     Back to my hallway buddy.

     Sigh.  What can I do?  What can I say?

     I think I said, “I won’t walk unless they come up with some super-fancy operation or something.”

     Did you see that?  Did you see what I did?  I’ve known the guy for years.  I half-love him in that way you can love characters you see regularly.  You care about them.  You don’t want to shoot them down.  Besides, I’ve tried to be harsher with him in the past.  Reiterate that my case is beyond hope.  It doesn’t matter what I know.  He believes.

     You see.  What I actually did there, with my friend,  was I “eased his discomfort.”

     I was polite.  I smiled.  I reassured.  Like it was no big deal.  We were moving down the hall but we were in an elevator.

     Inside, I ached.



     This is nowhere near what I wanted to write about.  I wanted to talk about my Momma’s trauma when she was little.  Her pains.  Then about my birth and what it possibly did to my mind.  My pains.  And then another birthday 46 years later where the birthday itself is somewhat responsible for my near cancer death and paralysis.  Big-time pains that are somewhat weirdly connected to my birth. Go figure.


     I got a joke for ya.  It’s blue-ish?  Maybe purple?  Ha.  I have a theory that I’m a funny-talking person, and maybe a little fun pops through in my writing, but I still can’t tell a full-on regular joke and make ya laugh.  You be the judge.

     There’s an older man who walks into a grocery store.  He’s starting to shop and goes down an aisle and past a female employee. She notices the military ball cap he’s wearing and she says to him quietly and politely as he slowly shops by, “Sir, your barracks door is open.”

     The man continues his shopping, puzzled by what she meant.  He goes down another aisle in the store and again passes the same employee from earlier.  And again she discreetly says, with a little more urgency, “Sir.  Your barracks door is still open.”

     He walked away slowly, completely lost on what she might be talking about.  Finally, the man finally finished his shopping and went to pay at the register, and yet again the same employee from earlier was checking out customers.

     She looked at the man and another time said, “Sir. Your barracks door is open! Your zipper…,” as she quickly gestured her hand to his mid-section.  He finally understood and turned around to take care of things.

     When he turned back, he looked at the employee and paused for half-a-minute. He then asked, “Young lady, did you see a little staff sergeant saluting and standing at attention??”

     “Why no…,” she slowly replied.  “I saw something a bit different from that.  I saw a sad tiny disabled veteran sitting on two large half-filled duffle bags…”




     How’d I do?  Take care...


Rey Don'tSay

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