June 24, 2006

Mail call: thanks to Ron Becher

When I walked in this morning, Gary made a face. He said that on account of him not being in his room yesterday when “dietary” had come and taken the orders for today’s meals, they’d chosen his meals for him. He’d really disliked the breakfast he was served and feared all the meals today were going to be terrible. I reminded him that if he wanted, I would go and get him something else to eat. That cheered him up.

We started with a stretching session, me climbing up on the firmed-up bed with him. I had had the idea of looping two gait belts together (imitating Shepherd’s chain loop devices, which supposedly had been ordered for Gary before the flap surgery but have never shown up), so we tried it, and it made things easier – once I got Gary’s leg in the proper position and looped a belt over the arch of his foot, he pulled on the other belt looped through the first one, and that helped support his weight while I held his leg in position. After the stretch session, we got his net (sling) in position under him. We weren’t absolutely sure if we were allowed to do a hoist without a tech or nurse present. I’d done it often enough under supervision that Gary trusted me to do it without being watched, but it turned out that his nurse walked in just as I got the hoyer. The nurse stayed during the maneuver (he said Gary and I made a good team :-)).

Gary may not have had his binder on tight enough, though. Later, when he was doing a depression weight shift, he felt a little dizzy. He tightened his binder, and that helped a little, but at the next weight shift he again had a problem with dizziness, so I tightened the binder even further around his abdomen, as it was hard for him to get it tighter himself. Apparently that solved the problem – he didn’t have another episode of dizziness the rest of the day.

When lunch came, Gary pronounced it acceptable (grilled cheese sandwich), but when “dietary” came around a shortly after that Gary found out they planned to give him meatloaf with brown gravy for dinner. No way was he going to chance that ;-). He asked if he could change it. The woman said yes and that his other choice was a tuna melt. He decided this was a good day for his wife to bring him dinner ;-).

After lunch it was time for another weight shift. He didn’t want to do another depression lift, because those were the kind that had made him dizzy. I offered to clear the pillows and blankets off the chair in the room so he could rest his arm on that as he leaned over to the side for a side weight shift. He said he’d find another chair, and wheeled off. I was trying to upload a blog entry, so my attention wandered from him. A short time later, Piotr Minc walked in and said hi – we were expecting him for a visit. “Didn’t you just walk by Gary?” I asked Piotr, thinking that since Gary wasn’t in the room he must be in the outer room washing his hands or something. Piotr said he hadn’t, and I said I had no idea where Gary had gone off to or what he was up to (such a good short term memory I have). Piotr said that that was good, meaning that the last time he’d seen Gary, Gary had been a far cry from being able to toodle off by himself somewhere. At that time, Gary had just been moved from the B’ham NICU to its nursing unit; he hadn’t been able to talk, still on the trache tube; he hadn’t sat up yet; we were just starting to think about rehab; I had just pulled out the information my older sister had given me about the best places to go.

As Piotr said later, what a difference six weeks has made. He thought Shepherd was a great place, with its intensive approach. We agree.

Anyway, Gary came back a few minutes later; he said he’d gone all the way to the gym to find a chair for his weight shift. Don’t ask me why he didn’t simply ask me to take the pillows and things off the chair in the room – I don’t know. Must be one of those “man things,” like not asking for directions ;-) (Gary definitely doesn’t display many stereotypical male behaviors – otherwise I wouldn’t have married him – but that is one he does.)

Piotr brought up some Topology Proceedings stuff; Gary said he was now at the point where he felt he could take over his duties on that, rather than filtering it first through Jo and Piotr – but of course he is so grateful that they did that for him when he wasn’t up to it.

Piotr had done some shopping for me (I had felt a little hesitant about asking him to do such a thing, since my reluctance to do the shopping myself is only due to hating to shop and the fact that taking the time to shop means having a little less time to spend with Gary. But Piotr had said he loves to shop, a consequence of having grown up in a socialist country, so I took advantage of that ;-)). Piotr got Gary some more of the skin cream I’ve been putting on him and three more pairs of the sleep pants he’s been wearing during the day (though called sleep pants, they look like lightweight sweat pants, at least for the most part – for some reason Gary is averse to wearing the red plaid pair (hey, they’d said to get him six pairs of sweatsuit-like pants, and in his size Walmart had had only three in solid colors; believe me, there were far worse options than the plaids ;-)). Piotr also brought some stuff up from home I’d asked for (including enough Basmati rice that I won’t have to shop for any more while here, and the only swim suit of mine that Joe could find – a suit which I unfortunately immediately knew was one that I’d looked great in fourteen years ago but wouldn’t dare put on now ;-)).

There was some talk about vans and chairs, during which I remembered Phil Zenor had sent an email reminding us that he had an electric wheelchair that Gary could borrow and telling us that the community bus in our town has a service where after getting a doctor’s statement, they will come to a wheelchair-bound person’s home, use a lift to get the person into the bus, and take the person to his destination, for $3 per trip (fantastic news, Gary thought!). Then Gary took Piotr on a little tour. The rec room was full, so we were all spared from playing pool or ping pong. We went to the garden instead. Gary had felt on the cool side up in his room, so had put on a long-sleeve T-shirt. He definitely didn’t need it out in the garden. In trying to get it off he lost his balance and went sideways. Not that there was any disastrous result – he had his seat belt on – but it brought home to me that there are still “basic” skills to be mastered. He also kept popping wheelies in trying to get back up the ramp – every time before he’s done that smoothly. We thought his net had gotten caught in his wheel, so we corrected that and he tried again. It went better, but still some wheelies. We didn’t figure out why this should be so.

Somehow time had escaped us, and Gary needed to go to a therapy session. I walked back to the parking garage with Piotr to transfer the bags of rice to my car. Piotr again remarked that Gary certainly seemed to already have all the physical skills he needed to get right back into teaching this fall (Gary had agreed with him about this earlier) and noted that it would be good on the psychological level as well. Gary has had getting back to work on his mind since the beginning, so I know that is true.

I found Gary’s substitute PT stretching him in the gym, which meant I wouldn’t have to do it during the evening visit (lately that time has been eaten up by the personal care tasks that we have taken over from the nurses, so we haven’t watched a DVD since finishing Capote). After the stretching came weights. I think the PT liked Gary cuz he would tell her if he needed to use a heavier weight – she said some of her patients try to “get away” with stuff, not working up to their capacity. But Gary is highly motivated to get as much as he can from his time here, so is no slacker. They finished up with practicing transfers back and forth between the exercise mat and his chair, including a couple where he didn’t use the board at all, just popped right over from mat to chair or vice versa. The PT still supplied help, but mostly in balance, not in lifting his weight. I could tell he was really pleased at doing the transfers without the board, and I gave him the thumbs up. On our way out of the gym I asked in what situations would he do transfers without a board. He said it would depend on the distance he needed to transfer and on his strength.

We had a half hour to go before we needed to get back to his room. We went down to the rec room. The pool table was still occupied by some able-bodied players, no patient in sight. Personally I think the people should have turned the table over to Gary. But as they didn’t, we went to the ping pong table. During play, Gary lost his balance when reaching too far to the side, so decided he needed to wear his chest strap. Later he felt a twinge in the shoulder as he reached out for a wide ball. I had felt a wrench in the leg chasing the ball. We decided maybe this wasn’t such a good game for us ;-).

When it was time to get Gary back in the bed, the nurse came and watched us do it. I should have asked if there was some official clearance to doing it on our own, but I forgot. While Gary called Mellow Mushroom to order himself a pizza, I got him situated to do the care of his flap as the skin nurse had taught me. I thought it best to have Gary’s nurse watch while I did it, so we called him back. He said I did it just fine. I did notice my final taping of the edges of the gauze wasn’t as neatly done as the nurses do it, but the nurse didn’t take points off for it not being symmetrical ;-)

I picked up Gary’s pizza, and after delivering it headed back to the hotel. Unfortunately I then remembered we had forgotten to give Piotr a check to give to Joe for a down payment on the garage. I called Gary and finally got through to him – since he was back in bed a nurse had had to go in and put the phone near him. We couldn’t think of a good way to get the money to Joe quickly, though later at the hotel I thought of Paypal and called Gary again. We weren’t sure what Joe would have to do to get the money from his side, assuming he didn’t have a Paypal account, so I sent Joe a “test” dollar. The Paypal instructions then said Joe would be emailed that this money had been sent to him and tell him how to open an account so he could receive it. We had our doubts that Joe would want to open an account. Gary had already called Joe and left the message that we’d forgotten about sending that check with Piotr, so the only thing to do was to wait and see what he suggested we do (fearing it would be along the lines of “go jump in a lake” ;-)). When Joe called later in the evening, he started off with, “Oh, you mathematicians,” but said in a joking way. I was relieved, as I thought he’d be exasperated with us – here he’s been working his tail off fixing our house, and we can’t even remember to write a check.

He said to just put the check in the mail sometime tomorrow (Sunday), that if I did it at a post office it might even be picked up then. I knew there was a post office right on the corner near my hotel, so on my way home I did send off the check – and at the same time mailed Janet Rogers a check that we'd also forgotten to send off with Piotr. But the box didn’t list Sunday as a collection day. Oh well, nothing more that can be done about that.

Gary had finished “Into Thin Air” already (he said it was a really good book), and I asked him how he liked the new book he’d just started. (Judy Roitman had told us about a book that was supposed to be good, called “Still Lives,” about people with spinal cord injuries. I had read the amazon blurb to Gary, and he thought it had sounded good so we’d ordered it. Piotr brought it up with him, it having already arrived at our home (which confused me – I thought I had had it mailed to Shepherd, though I was happy to see it had come so quickly)).

Gary said he liked the book so far. He said it was mostly about quadraplegics, though, which we both feel would be quite a tougher situation, and he’d like to find a book that included more paraplegics (we’ll have to check amazon recommendations). Gary said it was amazing how much the people in the book had been able to do with their lives. “No million dollar babies there, huh?” I said. He said that at the time we’d seen the movie he’d thought it was one-sided, but reading this book made him realize just how one-sided the movie was.

I had had a much stronger negative reaction to that movie when we’d seen it – I hadn’t liked the ending at all and had left the theater mad, railing, “What kind of message does that movie give to disabled people – that just because they can’t do what they could before or because they can’t do what able-bodied people do, their lives are worthless, might as well end it?” I freely admitted the movie hit a nerve because of the way CFS disabled me. Those first years after I’d come down with it, when it was such a struggle to do any math and I’d finally given up on it, when things had gotten worse and I couldn’t do much of anything, let alone anything “productive,” (set-theoretic topologists perform a valuable service to the world, don’t they? ;-) Or at least math teachers do. . . . Hmm, many students would beg to differ) I had felt my life was a waste.

But I digress (again ;-)). After seeing that movie I had gone on and talked about what Christopher Reeve had accomplished, about how this young woman in the movie was understandably suffering from depression just after an accident that had made it impossible to do the one thing she thought she had been born to do, but that that was not the time for someone to assist her in ending her life. She hadn’t had the opportunity to explore other options – the movie had made it seem like there weren’t other options, like there was nothing more she could do with her life. (When I brought this up again now to Gary, he pointed out that that might have been true many years ago – from the book he'd learned that until the beginning of the twentieth century, quadriplegics usually only lived a few months, dying of pressure sores and infection.) If the movie was supposed to be about how it was sometimes kinder to let someone end their life, then there should have been another reason for it, say that she was suffering from intense pain that had no chance of being relieved.

And that brings up another thing Gary learned from the book, that 60-65% of those with spinal cord injury have chronic pain; for 20-25% of them it is severe. I told Gary that one of the first things I had read about spinal cord injury was the possibility of having to live with chronic pain, and that I had had to stop reading the material, at the time not in the psychological position to be able to handle reading more along those lines. I had simply hoped that that wasn’t going to be his experience. So far it hasn’t been; that “demarcation line” around his chest can cause him discomfort but has never gotten to the point of being actually painful.

Thank God for that.