The New Learning Curve

Learning to manage a wheelchair is hard work. Learning to work with someone in a wheelchair is also hard work, and, despite the efforts of the nurses and therapists, we keep running up against things we didn’t know we didn’t know how to do. And, as a result, we’re becoming quite well acquainted with our local EMTs.

Case #1: getting into our car, 1992 Honda Accord, isn’t impossible. We did that last Sunday, on a lovely, sunny day, with temperatures in the high 60s. We drove around a little, the first time Lisa had been out for any length of time, we got a takeout lunch at a favorite spot, and then we went home. And that’s when we discovered that getting out of the car is an entirely different matter.

We didn’t make the transfer successfully. So there was Lisa, sitting on the ground beside the car, which is sitting in the Margeson parking lot because we don’t have any parking anywhere — and, adding to the irony, the Margeson is elderly and handicapped housing — and I’m standing beside her sheepishly calling 911 on my cell phone to see if the EMTs will come and pick her up and put her in her chair. The conversation goes something like this:

Operator: So your partner fell from her wheelchair. Is she injured?

Me: No.

Operator: Is she bleeding?

Me: No.

Operator: Is she conscious?

Me: (looking at Lisa, who is swearing under her breath) Oh, yeah.

The EMTs arrived within five minutes, picked Lisa up, dusted her off, put her back in her chair, and were off again in another five. We went inside, had our lunch, and then I had a small guilty fit about having “gotten Lisa into situation I couldn’t get her out of.” Lisa didn’t have much patience with that, either.

But I do worry. Because I can’t lift her unaided, I can’t risk doing anything that might let her fall, and that in turn makes her nervous, which makes it harder for us to try anything that we haven’t already done, which limits what Lisa can do and makes her feel more trapped…. It’s a nasty bit of negative feedback, and one that the physical therapists are working hard to help us break.

And then, just when you think things are going well, you have to learn something new.

Yesterday, Lisa got a new wheelchair. It’s a lot better than the old one, lighter and easier to move, with arms that fit under a desk to make working easier, and leg rests that offer full support and elevation. But it’s also different, and different these days also means difficult.

I mentioned the chair was lighter. As a result, even with the brakes locked, it doesn’t have the mass to hold firm on a polished hardwood floor when a 150-pound person leans on it, and that meant the old transfer method didn’t work. It was soooo close: she just slid slowly forward and I ended up lowering her to the floor in front of the chair. We had room to move, so we re-braced her legs, grabbed some new handholds, and this time I actually got her upright with her legs under her — and the chair slipped again.

So we called 911. I went through the litany (Bleeding? no. Injured? no. Conscious? Yeah, you should hear what she said a minute ago), the EMTs arrived — the same ones who came last time — and worked their magic, and Lisa was back in her chair with only a couple of minor bruises.

But now getting into the chair was a problem, something to be dreaded rather than something that had become more matter-of-fact. Luckily, this chair allows you to take each arm completely off, so we figured out a way for Lisa to slide from the end of the bed into the chair. It takes twice as long, but she says it feels secure. We had the physical therapist in again this morning to look at car transfers, and we had her look at the new transfer method, too, and she says it’s perfectly safe and workable, so I think, with practice, we’ll get back to where we were with the old chair.

But, my god, the learning curve is steep.

I remember once seeing a PBS show about Mount Everest, and realizing that, once you start for the summit, there is no flat ground anywhere. Everything is tilted at what looked like a thirty-degree angle; you pitch your tents on that slope, you sleep on that slope, you walk bent over, and eventually you climb that slope. That’s what I feel like right now.