The Epic Saga of the Wheelchair

So I have degenerative osteoarthritis, particularly in my spine. I’ve seen the MRI; I have bone spurs on pretty much every single bony area of the spine, and compressed discs in several strategic places — like my neck. Yes, it hurts. It hurts a lot. But that’s not what this particular story is about. I tell you this to provide the background for the saga itself.

Because of the problems with my spine, I have been losing the ability to walk to the point where I am now limited to no more than about 10–15 feet without developing sciatica down both legs. I can’t stand very long either. As it first began, I was given a mobility scooter so that I could go out into the world and not have to walk it all. That worked very well for a couple of years. But eventually my body reached a point where even walking around in the house used up most of the little energy I had. So I talked with my doctor and she agreed that a wheelchair was the next step. I could “save” the energy of not having to walk by riding around in the house, which would then allow me more energy to do other things, like prepare meals.

I was measured for my chair; decisions were made about what kind, what accessories I would need, and I practiced in a trainer wheelchair. Then I waited for the delivery of my own, personalized chair. I was asked about what color I would like to have…purple, of course. (Is there any other color?) The therapists who were helping me get the chair weren’t sure that it would come in that color, but we all figured, “Why not ask?” The worst that could happen was that they don’t do purple and I’d have a red chair.

Then began the wait for the (eventual) delivery of my very own wheelchair. Now, before you get all depressed about this, I want to tell you that I had always, since high school, figured I would end up in a wheelchair. I didn’t know it would be in this particular way, but since I had had rotten knees as a teenager, I knew that I was eventually not going to be able to walk. It was also part of my deal with the Devil: I’d go, happily and without fuss, into a wheelchair if I could continue to use my hands. So far, he’s met his end of the bargain.

I waited for about 3 months. Then one day, the wheelchair was delivered. By the driver of the company who made it. Who had not a fekking clue about setting it up for me. And it didn’t have a seat. Just a flat platform of metal, with bolt heads bumping out of it. On the other hand, it WAS purple!!

I put a gel cushion that I already had onto the metal platform. And I began using the chair. I have 5 levels of speed, but I have only been using 1 — just recently I feel secure enough in my driving that I will kick it up to 2, in the house. Outside, tooling down the road? I can actually handle it at 3. And if I am correct, the speed limit checker near the house (may have) clocked me at a whopping 7 miles per hour. Which is actually a good thing to know, so that I’ll have an idea of how long it would take me to get to the craft store.

When we were setting the specs up, I decided I wanted the joystick controls to be on the left side. I used to play a lot of console games, so I am very used to “joysticking” with that hand. It was a good call. Of course it took a little bit to get used to, navigating around the house and trying not to run over things or into walls. Getting into cabinets or the refrigerator is always interesting…got to open the door and get out of the way for it to open. Then trying to reach in and get whatever I want. But I have got it going on now!

And of course, while I was acclimating to the chair, I was *still* waiting for the “real” seat, the ramp to get in and out of the house, and the lapdesk I REALLY wanted. The therapists did all that they could to push the process — but they were really amazed that I had the chair…and that it was not accompanied by someone familiar with the whole “getting started in your new wheelchair” routine.

Oh the lapdesk…that also showed up at my door, with the driver once again trying to help me get it set up. Well, it was having none of that, we couldn’t get it to be usable, so I told him to take it back with him. And then, eventually (about 3–4 weeks later-ish), the tech from the local Rehab place called me to set up a time when he could come over to see what could be done to get me a working, workable desk. He spent about an hour, taking measurements, looking at the wheelchair itself and figuring out how to attach the desk in a way that didn’t trap me. It took about 3–4 more weeks before he had something that he thought would work.

He had been told to use the desk that was originally sent…so instead of creating a new one out of parts, he modified it. He is some kind of genius engineer — he created an attachment system that works great. I can lift up the desk and put in on the chair, and just as easily, take it off and get out of the chair when I need to. I am very pleased with having it. It was (and still is) my plan to use it when I went shopping. The desk is large enough to hold a shopping basket, so I can actually pick up items without having to put them into a bag between my feet, resting on the footrests of my leg supports. (Which I had been doing.)

The therapists got another, deeper pad for me to sit on. It’s cushy and very comfortable — which it had to be, since I’m sitting in it for the whole day. The chair is actually integrated pretty well into my routine. I can use it in the kitchen, to actually make meals. It will lift the seat up to a point that I end up being taller than if I was standing. (Okay, I’m short. Move on.) With the desk, I can chop and peel vegetables on that (with a cutting board, of course). Or, and this is what I’ve been doing, I take the cutting board and put it across an open drawer, then lift the chair up until the board is at a good height for me to use a knife. Because I can’t get my knees under the counter (cabinets, duh), I end up doing a lot of things sideways. Not the best answer, but better than wearing myself out trying to stand for the amount of time it takes to pull a meal together.

At this point in time, I am still (still) waiting for the ramp. Which means I bump in and out the door whenever I’m going out. But at least the crane in the car has been (FINALLY) modified from “scooter” configuration into a “Wheelchair” mode…which is another chapter and verse in this saga.

So this is how it all went down: I already had a crane lift, to get the mobility scooter in/out of our van. It’s an awesome thing, because it doesn’t take up very much room at all, unlike a trailer-style lift or a ramp. I was very happy when I was told that it would require only a bit of adjustment for it to handle the chair. Great, thinks I, this is one part that will go smoothly. HAHAHAHAHAHAHAHAHAHA. Excuse me, let me catch my breath.

Of course there was the prerequisite waiting, as the local medical equipment store would be the one making the change. The company that actually makes the lift (and the arms/attachments for whatever is going to use it) called me and said that they had sent the parts to the store and that someone there would call me. I waited almost 3 weeks before calling the store. Where I discovered that the tech who normally does this is out for a long time, getting his shoulder replaced. Great. But the owner of the company will be able to do it for me, but he’s not in right now…it took another 2 weeks before he actually showed up at my door.

He brought the parts that would allow the chair to be lifted. It took 4 hours and a couple of trips for him — to the hardware store for tools, back to the store to get a drill — and it was barely possible, with both him and the husband pushing and shoving, to get the chair into the back of the van. Not acceptable. Hubby has to be able to do it alone. The guy says he’ll do some research, talk to the manufacturer, and get back to us.

So another two weeks or so goes by. Hubby, who is something of an engineer — understanding how things go to together or work — had pointed out that the process could easily be solved by moving the arm of the lift itself. But no one was sure if that was possible… So the owner of the store finally comes back, says he talked to manufacturer and there is a way to adjust the arm. Seems that there is a tiny little bolt, on the side of the arm, that holds the arm in place. A few turns of the wrench, the arm was adjusted. He made a final adjustment to the lifting parts on the chair, so that it was level. Then he attached the chair to the lift and slowly, as grandly as any ship sliding out of the dock and into the water, the chair rose, rotated and slid into the back of the van. Much rejoicing all around.

Once again, I can go WITH my husband when he goes out. I can go into restaurants (and I have the most comfortable seat in the house); I can go into the grocery store. Hells’ bells, I can go BY MYSELF to the grocery store that is across the street from our house. I have more energy, so making meals is not the terrible ordeal it had become. I am being careful to do some walking — for example, the chair will not go into the bathroom because of the layout in the house. So I ride up, jump out of the wheelchair and go do my thing. Then I ride back to my desk. I don’t want to lose any more muscle tone than I had already. Having the chair is such a good thing for me. I am so glad I have it.

Now if I could just get the ramp for the house.