June 7, 2006 (2:44pm)
Someone emailed me about what I called my “performance anxiety dream” (the person mentioning as an aside that “performance anxiety” could have a different meaning for a middle-aged male). He then conjectured we all have that kind of dream, and told me about dreams of that nature that he’d had. His were “traveling dreams,” where the bags weren’t packed and the train was about to go. He wondered why his dreams involved trains, since he used planes much more often.
Hmm. Performance anxiety, trains . . . were there tunnels in your dreams? . . . no, I won’t go there ;-)
Mail call: thanks to Beth Fletcher – you find greatly amusing cards!
Okay, to the day. I came in to find Gary’s casts had been removed. The casting people said they’d come back later in the day with these casts split down the sides, turning them into what they called “bivalves.” Gary will then wear them for an hour to make sure the fit is right, and after they get the right fit he will wear them for eight hours a night for the rest of his life in order to keep his ankles from dropping.
The flap doc came in, took a look at his handiwork, and said Gary’s flap looked excellent. The rest of the staples are to be removed today (and they were). They will start stretching the flap area (by increasing the bend in his legs) starting on Friday. He will start sitting up on the 14th (starting with a half hour and increasing by a half hour per day), and he will start back in on rehab on the 19th! So assuming no setbacks, we are ahead of schedule.
At 11 he was wheeled to his bowel class. I had already subjected Gary to listening to what I had learned in my class, and neither of us picked up anything new from this lecture – but that’s all right. Lunch came afterward, and I told Gary it was better timing than having lunch after the skin lecture (where they show awful pictures of bed sores). We thought it ironic how part of the lecture was on the increased importance of good nutrition for a person with SCI, and yet the hospital food was dismal. Today’s lunch was particularly bad, the entree being deep-fried fish that seemed mostly breading. I removed as much breading as I could, per Gary’s request, and he filled out his lunch with some nuts I had bought him. I offered to go to the Fresh Market and get him something more, but he declined the offer.
After lunch was another hour-long class, this one on counseling. It turned out to be like a group therapy session, this one on communication. The counselors and class members talked about how to deal with others upon returning to the outside world, how to let others know what had happened to them and what their abilities and disabilities were (I told Gary he shouldn’t run into too many problems that way – everyone already knew about his situation by reading the blog ;-)). All agreed they didn’t want others to feel sorry for or pity them, but that empathy was a good thing. The counselors told the patients they might find it helpful to take the initiative to put others at their ease, that by starting the conversation, it would help others to treat them normally, but on the other hand, if there were people they didn’t want to share with, they were under no obligation to do so.
Later in the afternoon the PT came, and I asked her about vans. I had checked my email earlier and discovered that a couple people – Phil and Jo – had mailed me to tell me my expectations for a wheelchair-friendly van are too low. (Unfortunately, during my earlier talks with the voc person and the PT and OT about cars and hoyers and such, I hadn’t remembered Jo’s previous email on the topic.) I showed the PT Jo’s email where Jo describes a friend’s van, which comes with a lift, and the PT said sure, there were vans like that. I’m not sure why she and the other Shepherd people didn’t bring up the type of van Jo talked about themselves (maybe that would have come up later in the driving class), but the PT did say many people didn’t have the financial resources to get vans that had lifts in them, or even for vans that had ramp entrances. I’m not sure about that, since in the catalogue she then gave us, there were used ones for about $2000 (granted, they were 70's models). She told us that certain companies that supply vans thus equipped will bring the vans out to Shepherd for the patients and their family members to try.
This will still be in the future, though. When Gary first gets back home after rehab, we will have to use a regular car or van for a while, we believe, with a hoyer or with Gary doing depression lifts. Because, first of all, we will have to buy the van, which we don’t believe we’ll have time for here. Secondly, Gary will have to come back to Shepherd or go somewhere else to learn how to drive a van with hand controls. (Shepherd has a driving school, where first the clients are extensively tested to make sure their SCI hasn’t rendered them unsafe to drive, as might be the case if they’ve aquired attention difficulties due to brain changes that might not be readily apparent; then the clients start out in simulators.) Then Gary will have to be re-licensed to drive (legally his old license is no longer valid – if he were to use it and get in an accident, the other person could claim that Gary had physical limitations not noted on the license, that these had contributed to the accident, and that therefore Gary shouldn’t have been driving).
Soon after, the casting person came (I suppose I should have learned what her title is). “Your clamshells are here,” I told Gary. “They’re called ‘bivalves,’” the casting person corrected.
Well, I was close.
She and the PT taught me – or rather, tried to teach me – how to put the bivalves on, since unless Gary gets really, really flexible I am going to have to put them on him each night. They put Gary on his back (temporarily, as for the flap he still needs to lie on his side), and then the casting person put the left bivalve on. When she was through I tried putting the other one on Gary’s right foot. It had looked highly nontrivial ;-) when she’d done it, and I found it downright hard, not having the eight arms I apparently needed. First there is the matter of bending his leg up at the knee and getting his foot resting on the bed. Well, he can’t hold his knee up with his leg muscles, and though he tried to help by holding his leg underneath his thigh, it was still a lot of weight for me to hold. I ended up hooking my left arm under his right knee and letting his knee rest on my shoulder (all the while wondering what this was doing to my back). Then I had to stuff his heel into the lower half of the cast and try to get the cast molded against his lower leg. Again, since he can’t hold his leg up, this wasn’t as easy as it may sound. (“You’re doing great,” the casting person told me, as she re-adjusted everything I’d done. Uh huh.) Now it was time to put the top half of the cast on – oops, it was on the table behind me, not good advanced planning. The PT handed it to me, and I fitted it over the bottom half. Next came the one-handed wrapping and tightening of the velcro straps that go around the two halves of the cast. First came the middle strap that goes around the calf, then the bottom one that goes around the top of the foot, then the top strap that goes around the top of the shin – except, before tightening that one I needed to pull (using my eighth hand) the top of Gary’s calf muscle (what is left of it – things have noticeably atrophied down there) out and up so that it doesn’t get pinched between the “valves.” Then all the straps had to be re-tightened so that there was no space between the two valves (even the casting person had to do this – it is part of the procedure). And then one final check is made to make sure there is a seamless fit and that no skin is pinched between the valves.
I then collapsed onto the bed in exhaustion.
Okay, that was an exaggeration, but putting that bivalve on was work. The casting person told me to practice putting them on each day and claimed I’d get it down with practice. She’d better be right.
I left to grocery shop, take a walk, make dinner, and meditate. Just as I got in the door from my walk, Gary called. His dinner had been terrible, he said. I told him that, coincidentally, I had just checked out the deli section of the Fresh Market and told him what I’d seen. He asked me to bring him some salmon, as well as the Hagen Daz I told him I’d already picked up. I had already put some mixed baby greens from that market in the hospital fridge for him, so all this would make a nice meal.
So, later, on my return trip to Shepherd, I stopped in at the market and got the salmon. At the hospital I set up his meal (except for putting the ice cream in the hospital freezer – in a brown paper bag with his name on it so it would still be there when he finished his meal). Shortly after he commenced his second dinner, his cousin Helen arrived. She had called earlier in the day to say she was coming. She asked if I wanted to use her condo from the 16th to the 24th – at which time her remodeller would commence working on it. Since I’d gotten such a good deal from the Residence Inn, I decided it would be easier not to move twice, so I declined her kind offer. She then offered to let Gary’s family use it while they are here, so we called Norma and had a four-way conversation about it. Hopefully mine and Helen’s directions to Helen’s condo won’t result in the Gruenhage family getting too lost. ;-)
Close to the end of the conversation Norma said, “See you in a week.” For some reason it hadn’t connected in my brain that their visit was only a week away. Which, significantly, meant my “kick-out” date at the apartment is only 9 days away (Friday the 16th). Which means I have to start moving things out to my car starting tomorrow, because Shepherd housing gave me a check-out deadline of 9am, and I am supposed to have the apartment cleaned and sheets and towels washed and folded by then. Since I have no intention of getting up at six to do this, especially on a day when Gary’s family will be here, my plan is as follows: clear as much of my stuff as possible out of the apartment ahead of time; clean no later than Wednesday and then try to be really really neat so all I have to do is give things a last swipe; and wash the sheets and towels on Thursday and then “borrow” a towel from Shepherd to use overnight (I know where the linen is kept, since I get towels for Gary to use as “bibs” during these lay-down meals of his). I was stumped on the bedsheet issue, but I thought to ask Helen if I could borrow some from her for that one night I’ll need them, and she agreed.
Helen left soon after the end of the phone conversation, saying she would show me the ins and outs of her condo tomorrow, in case there’s any info I need to pass onto the Gruenhages. After she left Gary remembered his Hagen Daz, thus not having to share any with her (if he ever hears I wrote this, he’ll protest, saying he hadn’t done this intentionally), so I scooped him out some and then left for the night after he made suitable noises of approval of the ice cream.
Before signing off on this entry, let me thank Michel for reiterating in an email that he saw no problem with arranging a suitable teaching schedule for Gary this coming year, starting in the fall. Because that is the case, and because Gary could, as might be necessary or wise at the beginning, come home after teaching rather than staying on campus all day long as he used to, we’re as confident as we can be at this point that this would overcome the doc’s concern that Gary won’t know his body well enough to be at work so soon.
Oh, and in response to an email, no, I don’t swim anymore. During my first years of CFS, before I was diagnosed and had no idea what the problem was and how it could cycle, I used to try to start up on my swimming whenever I seemed to be going through a reprieve – I had been a competitive Masters swimmer, even ranking first in the Southeast in an event in my age-group (30-35 year olds) the summer before I got ill, and I was quite the fanatic (right, Connie? :-)). But I kept getting ill soon after I would start getting into the pool again, even though I started off easy. I don’t know if it was that the exercise was too much for me, or if I was reacting to the chlorine. Anyway, that discouraged me from attempting it much, and after my big crash in ’95, I’ve never swum again. I have no desire to – I don’t want to have that stark reminder of what I can no longer do in that regard. I suspect it’s like Gary telling the TR that he has no interest in re-learning how to play golf under his current circumstances. I asked him why, and he told me it wouldn’t be fun anymore, and I completely understand – it was something he really really enjoyed, and now he’s not going to be able to do it as he could, so rather than be reminded of that, it’s better to try something different, something that didn’t mean as much as it did before the disability struck – that’s my interpretation of why he doesn’t want to do it, but that might simply be my explanation of why I don’t want to swim anymore.
All for now.
Someone emailed me about what I called my “performance anxiety dream” (the person mentioning as an aside that “performance anxiety” could have a different meaning for a middle-aged male). He then conjectured we all have that kind of dream, and told me about dreams of that nature that he’d had. His were “traveling dreams,” where the bags weren’t packed and the train was about to go. He wondered why his dreams involved trains, since he used planes much more often.
Hmm. Performance anxiety, trains . . . were there tunnels in your dreams? . . . no, I won’t go there ;-)
Mail call: thanks to Beth Fletcher – you find greatly amusing cards!
Okay, to the day. I came in to find Gary’s casts had been removed. The casting people said they’d come back later in the day with these casts split down the sides, turning them into what they called “bivalves.” Gary will then wear them for an hour to make sure the fit is right, and after they get the right fit he will wear them for eight hours a night for the rest of his life in order to keep his ankles from dropping.
The flap doc came in, took a look at his handiwork, and said Gary’s flap looked excellent. The rest of the staples are to be removed today (and they were). They will start stretching the flap area (by increasing the bend in his legs) starting on Friday. He will start sitting up on the 14th (starting with a half hour and increasing by a half hour per day), and he will start back in on rehab on the 19th! So assuming no setbacks, we are ahead of schedule.
At 11 he was wheeled to his bowel class. I had already subjected Gary to listening to what I had learned in my class, and neither of us picked up anything new from this lecture – but that’s all right. Lunch came afterward, and I told Gary it was better timing than having lunch after the skin lecture (where they show awful pictures of bed sores). We thought it ironic how part of the lecture was on the increased importance of good nutrition for a person with SCI, and yet the hospital food was dismal. Today’s lunch was particularly bad, the entree being deep-fried fish that seemed mostly breading. I removed as much breading as I could, per Gary’s request, and he filled out his lunch with some nuts I had bought him. I offered to go to the Fresh Market and get him something more, but he declined the offer.
After lunch was another hour-long class, this one on counseling. It turned out to be like a group therapy session, this one on communication. The counselors and class members talked about how to deal with others upon returning to the outside world, how to let others know what had happened to them and what their abilities and disabilities were (I told Gary he shouldn’t run into too many problems that way – everyone already knew about his situation by reading the blog ;-)). All agreed they didn’t want others to feel sorry for or pity them, but that empathy was a good thing. The counselors told the patients they might find it helpful to take the initiative to put others at their ease, that by starting the conversation, it would help others to treat them normally, but on the other hand, if there were people they didn’t want to share with, they were under no obligation to do so.
Later in the afternoon the PT came, and I asked her about vans. I had checked my email earlier and discovered that a couple people – Phil and Jo – had mailed me to tell me my expectations for a wheelchair-friendly van are too low. (Unfortunately, during my earlier talks with the voc person and the PT and OT about cars and hoyers and such, I hadn’t remembered Jo’s previous email on the topic.) I showed the PT Jo’s email where Jo describes a friend’s van, which comes with a lift, and the PT said sure, there were vans like that. I’m not sure why she and the other Shepherd people didn’t bring up the type of van Jo talked about themselves (maybe that would have come up later in the driving class), but the PT did say many people didn’t have the financial resources to get vans that had lifts in them, or even for vans that had ramp entrances. I’m not sure about that, since in the catalogue she then gave us, there were used ones for about $2000 (granted, they were 70's models). She told us that certain companies that supply vans thus equipped will bring the vans out to Shepherd for the patients and their family members to try.
This will still be in the future, though. When Gary first gets back home after rehab, we will have to use a regular car or van for a while, we believe, with a hoyer or with Gary doing depression lifts. Because, first of all, we will have to buy the van, which we don’t believe we’ll have time for here. Secondly, Gary will have to come back to Shepherd or go somewhere else to learn how to drive a van with hand controls. (Shepherd has a driving school, where first the clients are extensively tested to make sure their SCI hasn’t rendered them unsafe to drive, as might be the case if they’ve aquired attention difficulties due to brain changes that might not be readily apparent; then the clients start out in simulators.) Then Gary will have to be re-licensed to drive (legally his old license is no longer valid – if he were to use it and get in an accident, the other person could claim that Gary had physical limitations not noted on the license, that these had contributed to the accident, and that therefore Gary shouldn’t have been driving).
Soon after, the casting person came (I suppose I should have learned what her title is). “Your clamshells are here,” I told Gary. “They’re called ‘bivalves,’” the casting person corrected.
Well, I was close.
She and the PT taught me – or rather, tried to teach me – how to put the bivalves on, since unless Gary gets really, really flexible I am going to have to put them on him each night. They put Gary on his back (temporarily, as for the flap he still needs to lie on his side), and then the casting person put the left bivalve on. When she was through I tried putting the other one on Gary’s right foot. It had looked highly nontrivial ;-) when she’d done it, and I found it downright hard, not having the eight arms I apparently needed. First there is the matter of bending his leg up at the knee and getting his foot resting on the bed. Well, he can’t hold his knee up with his leg muscles, and though he tried to help by holding his leg underneath his thigh, it was still a lot of weight for me to hold. I ended up hooking my left arm under his right knee and letting his knee rest on my shoulder (all the while wondering what this was doing to my back). Then I had to stuff his heel into the lower half of the cast and try to get the cast molded against his lower leg. Again, since he can’t hold his leg up, this wasn’t as easy as it may sound. (“You’re doing great,” the casting person told me, as she re-adjusted everything I’d done. Uh huh.) Now it was time to put the top half of the cast on – oops, it was on the table behind me, not good advanced planning. The PT handed it to me, and I fitted it over the bottom half. Next came the one-handed wrapping and tightening of the velcro straps that go around the two halves of the cast. First came the middle strap that goes around the calf, then the bottom one that goes around the top of the foot, then the top strap that goes around the top of the shin – except, before tightening that one I needed to pull (using my eighth hand) the top of Gary’s calf muscle (what is left of it – things have noticeably atrophied down there) out and up so that it doesn’t get pinched between the “valves.” Then all the straps had to be re-tightened so that there was no space between the two valves (even the casting person had to do this – it is part of the procedure). And then one final check is made to make sure there is a seamless fit and that no skin is pinched between the valves.
I then collapsed onto the bed in exhaustion.
Okay, that was an exaggeration, but putting that bivalve on was work. The casting person told me to practice putting them on each day and claimed I’d get it down with practice. She’d better be right.
I left to grocery shop, take a walk, make dinner, and meditate. Just as I got in the door from my walk, Gary called. His dinner had been terrible, he said. I told him that, coincidentally, I had just checked out the deli section of the Fresh Market and told him what I’d seen. He asked me to bring him some salmon, as well as the Hagen Daz I told him I’d already picked up. I had already put some mixed baby greens from that market in the hospital fridge for him, so all this would make a nice meal.
So, later, on my return trip to Shepherd, I stopped in at the market and got the salmon. At the hospital I set up his meal (except for putting the ice cream in the hospital freezer – in a brown paper bag with his name on it so it would still be there when he finished his meal). Shortly after he commenced his second dinner, his cousin Helen arrived. She had called earlier in the day to say she was coming. She asked if I wanted to use her condo from the 16th to the 24th – at which time her remodeller would commence working on it. Since I’d gotten such a good deal from the Residence Inn, I decided it would be easier not to move twice, so I declined her kind offer. She then offered to let Gary’s family use it while they are here, so we called Norma and had a four-way conversation about it. Hopefully mine and Helen’s directions to Helen’s condo won’t result in the Gruenhage family getting too lost. ;-)
Close to the end of the conversation Norma said, “See you in a week.” For some reason it hadn’t connected in my brain that their visit was only a week away. Which, significantly, meant my “kick-out” date at the apartment is only 9 days away (Friday the 16th). Which means I have to start moving things out to my car starting tomorrow, because Shepherd housing gave me a check-out deadline of 9am, and I am supposed to have the apartment cleaned and sheets and towels washed and folded by then. Since I have no intention of getting up at six to do this, especially on a day when Gary’s family will be here, my plan is as follows: clear as much of my stuff as possible out of the apartment ahead of time; clean no later than Wednesday and then try to be really really neat so all I have to do is give things a last swipe; and wash the sheets and towels on Thursday and then “borrow” a towel from Shepherd to use overnight (I know where the linen is kept, since I get towels for Gary to use as “bibs” during these lay-down meals of his). I was stumped on the bedsheet issue, but I thought to ask Helen if I could borrow some from her for that one night I’ll need them, and she agreed.
Helen left soon after the end of the phone conversation, saying she would show me the ins and outs of her condo tomorrow, in case there’s any info I need to pass onto the Gruenhages. After she left Gary remembered his Hagen Daz, thus not having to share any with her (if he ever hears I wrote this, he’ll protest, saying he hadn’t done this intentionally), so I scooped him out some and then left for the night after he made suitable noises of approval of the ice cream.
Before signing off on this entry, let me thank Michel for reiterating in an email that he saw no problem with arranging a suitable teaching schedule for Gary this coming year, starting in the fall. Because that is the case, and because Gary could, as might be necessary or wise at the beginning, come home after teaching rather than staying on campus all day long as he used to, we’re as confident as we can be at this point that this would overcome the doc’s concern that Gary won’t know his body well enough to be at work so soon.
Oh, and in response to an email, no, I don’t swim anymore. During my first years of CFS, before I was diagnosed and had no idea what the problem was and how it could cycle, I used to try to start up on my swimming whenever I seemed to be going through a reprieve – I had been a competitive Masters swimmer, even ranking first in the Southeast in an event in my age-group (30-35 year olds) the summer before I got ill, and I was quite the fanatic (right, Connie? :-)). But I kept getting ill soon after I would start getting into the pool again, even though I started off easy. I don’t know if it was that the exercise was too much for me, or if I was reacting to the chlorine. Anyway, that discouraged me from attempting it much, and after my big crash in ’95, I’ve never swum again. I have no desire to – I don’t want to have that stark reminder of what I can no longer do in that regard. I suspect it’s like Gary telling the TR that he has no interest in re-learning how to play golf under his current circumstances. I asked him why, and he told me it wouldn’t be fun anymore, and I completely understand – it was something he really really enjoyed, and now he’s not going to be able to do it as he could, so rather than be reminded of that, it’s better to try something different, something that didn’t mean as much as it did before the disability struck – that’s my interpretation of why he doesn’t want to do it, but that might simply be my explanation of why I don’t want to swim anymore.
All for now.
posted by Peg Daniels at 7:25 AM
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