Without a Net

I've hired a new assistant, Sonia.  So far, she's really great -- picks up on things quickly, understands what the therapists are teaching her, and doesn't make me fear for my life each time I get into the van.  We made it to therapy all three days this week.  

I realized something on Tuesday, as Cara was transferring me from my chair to the standing frame and Sonia watched with a rather concerned look on her face.  Hanging from the ceiling in the Goldman lift*, watching the floor pass by several inches below my dangling feet, I suddenly realized that this was the first time I'd ever been out of my chair without a safety net.  By safety net I mean someone with whom I felt secure, someone who could get me back into my chair unharmed and straighten me out so I'm sitting properly.

Getting me situated in my chair is much more difficult than you might think, particularly with the deplorably scoliotic state of my back.  We need to make sure my hips are even (not sitting too far to one side or the other), and that I'm pushed all the way back in the seat.  Then, we need to align my trunk, which involves a shifting around of ribcage, realignment of spine, rotation of shoulders.  It looks terribly uncomfortable, but it really isn't.  Cathy has this process down to a science, and Rich has elevated it to an art form. 

Though Cathy and Rich are both very adept at correcting my posture, they are about the only people who are.  It’s not something I can easily direct someone how to do; it’s more one of those things that needs to be demonstrated.  This being the case, I don’t go anywhere that I need to get out of my chair without one of them in tow.  Consequently, I don’t get out of my chair during the day, which is why it was hard for me to get used to doing so when I started therapy.

So, hanging from the ceiling, watching the floor pass beneath my dangling feet, I suddenly realized that I was out of the safety of my chair, and had no foreseeable means of getting back in and situated properly, and nearly had a panic attack.  I was on my own – a concept which, to me, is utterly terrifying.

Although this therapy program is intended to reawaken dormant connections in my body, it has done much the same for my mind.  Being put into a variety of situations that I have not been in (whether due to lack of opportunity, or my intentionally avoiding them) for quite some time has forced me to confront fears, change perspectives, and shed the complacency I’ve built up.  Sometimes, it’s more difficult to contend with than the physical aspect. But, I believe it is part of the healing.

*still trying to find a good image of the Goldman lift.  Will update when I find one.

Rich saves the day... again.

I think he must park his trusty white steed around the corner, because when Rich valiantly appears, in my hour of need, to rescue me -- as he invariably does, no matter how treacherous the peril I've found myself in on any given day -- his equid friend is nowhere to be found.

This particular debacle was unavoidable. The new aide I hired started yesterday (Monday, 9/9). We discovered, while en route to the MSC to pick up a few remaining items from my office, that she was unable to drive my van. Now, I've been in the van with dozens of people who were new to driving it, but never have I actually been afraid for my life. There was drifting into other (occupied, oncoming) lanes; drifting on to the shoulder, into the grass, against the embankment on Needwood Road; nailing the curb with both passanger-side wheels. No hyperbole, no overstatement -- I was lucky to have made it home.

Obviously, that employment arrangement was not going to work out for either of us -- a decision that left me both back at the employee-search drawing board and without transportation to therapy today.

Enter Rich (amid much trumpeting and fanfare to announce his gallant arrival), who offers to take me, despite having already taken the day off on Friday (9/5) for the same reason. After already missing four days of therapy, I was loathe to miss another. Rich, knowing how

important it is, didn't want me missing any more, either. I didn't even ask him -- he just volunteered. After I'd exhausted all other means of transport and, finding nothing, was resigned to missing yet another day, I was rather morose. As I sat, brooding, he said, simply, "I'll ask Martha," and began tapping away on his laptop keyboard.

Whatever would I do without him? I dread to think.

God bless Martha, his boss, who has been so very generous and understanding!

So, thanks to Sir Richard the Awesome, I made it to therapy today. Cara continued her FES lesson from Friday, instructing Rich on where to put the electrodes on my muscles and how to feel for the muscle contraction, how to program the Empi unit, and how to modulate the e-stim pulse strength.

We've found that I can get up to about 70mA on my leg muscles, but I can't tolerate much more than 40-45 mA on my arms and shoulder or it becomes too painful.

Single White Cripple Seeks Competent Aide

As Krista has returned to nursing school for her fall (and final) semester, and I had no one else to take me to therapy, I missed my fourth day of therapy.

Finding a new assistant is never easy, but this time has been much more difficult -- the prospect of driving 72.8 miles (round trip) seems to be a deal breaker for most.  Can't say I blame them -- it's quite the long haul.

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Beyond applicant misgivings about the driving aspect is my own apprehension about the qualifications of those who have been applying.  Where I could look beyond or work around language barriers in the past, the difficulty in communicating will be magnified by the intricacies of the therapeutic methods they will be learning in order to conduct my home-based therapy program.  I'm not quite sure what I'll do about that.

If you know of someone looking for a job as a personal assistant, please do send them my way. I can imagine there are much more interesting jobs to be had, but, I am, at the very least, entertaining.  ;)