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.

It Takes a Village

Well, we’ve gone, in three weeks, from Lisa’s walking with a cane to needing a 3-sided walker to being in a wheelchair. The effects are a little like the effects of a stroke, but it came on in increments, not all at once, so, unlike most stroke patients, she (and I) aren’t learning to handle everything in the safer-feeling confines of a rehab hospital. She can stand with support, can support herself for about 15 seconds, but cannot walk at all. As I said in my previous post, the problems aren’t so much with either the motor or the sensory nerves — there is strength in her legs, and she can feel things — but in the nerves that control the brain’s ability to understand where her legs actually are.

I probably don’t need to say that this has been scary. We’ve gone from being independent adults to needing a level of help that I’ve never experienced: home health aides, visiting nurses, physical therapists, occupational therapists to help us figure out how to rearrange the house, and social workers to expedite permits and all the other processes.

But what we have also had is help from our friends. I mentioned before that we needed to move the bedroom downstairs and my office upstairs. With the wheelchair in place, we also needed a ramp to the back door, a doorway widened, and a closet altered. Over the last two weeks, our friends have done it all.

First Lisa’s sister Noralie and brother Bruce came up and moved my 2000+ books from old office to old bedroom. (OK, Bruce brought his Airedale puppy, Hamish, who did chase our oldest, fattest cat — this is the cat who couldn’t move fast enough to get out of a falling window, and lost the tip of his tail. With sufficient incentive — and Hamish was good incentive — he not only made it from living room to kitchen in record time, but he got his 19+ pounds halfway up a kitchen curtain. Once we were sure he was all right, it really was pretty funny. Imagine a black cat about the size and roughly the same shape as a basketball clinging spread-eagled to a black-and-white toile shade….)

(Did you know that the Wizard Earl of Northumberland had about 2000 books in his private library back in the 1580s? Neither did I, but I bet he never had to worry about moving them.)

Then Lynne and Victoria and Amy came over and did most of the painting in the new bedroom. This was a giant help, because when I decorated my office, I painted the trim a deep rust-red. Lisa said, “You know, if you ever change your mind, that’s going to be hell to paint over.” I said, “I’m not going to change my mind.”

Let’s just say she was right.

But the room is now a creamy yellow with deep gold trim, and looks beautiful with our sage-green bedspread.

Then, over the next two days, they moved us. First they spent a day boxing and moving stuff out of both rooms so that the furniture could be exchanged. (I think Alan got the worst of it, because he arrived in time to empty my office closet. That’s the one that held all my supplies, plus 14 years of unsorted junk from the last move. I am still grateful that all he said when I apologetically opened the door was, “Oh. My.”) The next day, in five hours, they swapped the rooms completely, and altered a closet that was going to block wheelchair access. Steve and Denise and Leigh and Lynne and Melissa and Nathanial and Maura and Danny did construction, moved furniture (heavy furniture!), cut apart and rebuilt bookcases that wouldn't fit up our stairs, moved boxes, got books into shelves and files swapped from one computer to another — oh, yes, and Maura and Danny brought coffee and bagels, so there was time to eat and chat and feel less stressed. We had expected to take another day to finish, but at the end of the five hours, we had a bedroom we could sleep in.

It was an amazing, miraculous experience. We’re just so lucky to have friends like these, skilled people willing to give up a few days to help out.

Oh, and a postscript. Tuesday, while it was snowing the kind of snow that feels like thick, cold rain, Steve and Brett attached the (rented) ramp to the back door. We asked if it was possible to remove the doorjamb in the kitchen to make a little more room for the wheelchair to swing. They looked at it, pried at a couple of boards, then took down the door casing. We gained about 4 inches, which is more than enough to make the transition easy. Like I said, amazing people!