And more Jane progress....
Dear Friends --
Jane continues to improve, though she has some rough spots. (As always, our comments when I read them back to Jane, are in bold.)
Yesterday, Saturday, May 26th, my work schedule got all messed up, with one client showing up at a different time, and another who cancelled, calling to reschedule. The upshot was that I didn't make it home for lunch. I checked with Jane on this, and she reassured me that she understood and that it would be fine. And when I came home, nothing seemed amiss -- she was all smiles and I got the usual long hug.
On reading this, Jane said, "I felt OK."
But then she seemed to become more withdrawn. "I just felt so empty," she told me the next day. "And I got worried that I'd have that emptiness the rest of my life."
Part of this is we're waiting for Jane's new eye glasses, which should arrive next week. This has made reading much more difficult for her. And with reading more difficult, she has less she can do. Part of it, too, is Jane's improvement, meaning that she's more aware of what she can't do.
At this, Jane nodded.
"I can't spell any more," she said this morning. "It's not like I used to be."
"You mean you have trouble recognizing word you used to know?" I asked.
"Yes," she said, "and I've got so much I have to learn."
I explain that it's not learning, as in learning everything anew, though there will be some of that. I firmly believe that Jane still has, somewhere in her brain, her mind, all the words she used to have.
Jane nodded. "I have them in the other... the opposite side of my top arrangement."
"I agree," I said.
Jane certainly has some good access to much of her extensive vocabulary. I'm not trimming my vocabulary when I speak with her, and she recognizes the words. So all that good stuff is still in there.
But we need to find ways so Jane can reach it reliably.
That's certainly improving. But Jane is a long way from where she used to be, and sometimes that's profoundly discouraging.
Again, Jane nodded.
What set her off happened as we sat down for supper. Again, as the last time when I didn't make it home for lunch, this about a month ago, she looked at me and asked,
"Isn't he coming in to sit down with us?"
Jane started laughing.
"Who," I asked.
"The man who came home from work," she said.
"I'm the man I came home from work," I said, feeling uneasy.
Jane's laugh continued to increase. "It's only funny afterward."
"But you," I said, "that you can find it funny, is one of the most important skills you have. And I think you have your mother to thank for it."
"Oh, Lord," she said, laughing even more, "could well be. I felt horrible about it last night."
"No, the man who sleeps here," Jane insisted.
"Jane," I said, hoping to stave off a repeat of her terror, "I'm Dave; I'm your husband. I'm the one who sleeps here."
I could see it in her eyes: she realized her confusion. As she said the next morning, it was the last straw in a difficult day. She burst into tears, and didn't want either to talk about it or to be consoled.
We went to be early, which was fine with me, and we cuddled wordlessly for a long time.
The next morning, as usual, she was better, and she, on her own initiative, explained what happened to her. When I offered the idea that this may have been because I didn't come home for lunch, she pushed that aside. "I don't think that's it."
But I insisted. "I think it's really hard for you to be separate from me."
"That's certainly true," she responded, "and I hope I get over it."
"Yes," I agreed, "but I don't want you to get over wanting to have me around."
Jane laughed.
She chuckled. The idea was so silly as to need no comment.
"I think when I'm not around," I said, "you're a lot more likely to feel empty."
Jane agreed. "And I don't understand why I should be that way."
"When you hit your head, more than just your words, your speech got mixed up." I paused. This is still hard to explain -- I'm still trying to find the right words for it.
"I didn't used to be like this," Jane offered. "I don't think I used to worry when you weren't around."
"You didn't," I reassured her. "You didn't mind when you went to work, or when I went to work." I paused again, still searching for the right words, and still dissatisfied. I decided to go ahead anyway. "I believe that you were securely bonded to your father."
"Oh, yes," Jane agreed. "No question."
"And you could take that love, your father loving you, with you, even when your father was there. When your father went out to farm, you still felt loved by him."
"Right," she said.
"And when you went to school, you didn't lose your sense of being loved by him."
"No," she said, "that's right."
"And that was true when we first got together," I said. "You didn't lose the sense of being loved when I wasn't around."
"That makes sense."
"And that," I said, "is part of what you lost when you hit your head. That holding onto me, to us, to our love, even when I'm not there -- that's what really rattles you."
Jane nodded with a serious look on her face.
"I do get silly when you're not around," she said, "especially if I don't know when you're coming home."
"Jane, you always know when I'm coming home. I think it's hard, even when you know, that I'm not there."
Jane chuckled.
"That's what I want to get over," she said.
Now came the hard part, the part where the words don't fit yet, don't quite make the sense I wanted them to. "When you have trouble hanging onto our love, our being together and not having to worry about that.... It's more than just worrying about us." I frowned. "You also feel empty, because when you can't get to us, you can't get to yourself, either. You need us to get to yourself."
Again, Jane nodded.
Jane looked thoughtful. "That may be right."
There are the usual Jane firsts, signs of improvement. Just a couple of examples. This morning, I asked Jane to make me an extra piece of toast, which of course, she did. But that meant pulling out the toaster oven tray farther than usual, and it got stuck. With no hesitation, she gave the grill tray an extra couple of shoves, with the right amount of effort, until it went back in. A sequence returned when she had need. Yesterday or the day before yesterday, at breakfast when she checked in the refrigerator and found we were out of jam, she went to the cabinet where we have always stored the next jam, pulled it out, and opened it.
Old sequences are definitely coming back. Probably more than I realize, and certainly more than Jane realizes. Because if I'm not around, and if I'm not noticing, it's easy to let those slip by. And since Jane does it automatically, she doesn't realize what she's done, either.
"Yeah," Jane said.
"That must be very frustrating," I said.
Jane began to laugh. "Listen. Even since I can remember through high school, I was head of the class. I was not stuck."
"And now you are," I said.
"And now I am."
"And you don't like it," I said, taking my cue from her face.
"No, she said, laughing again, "I don't like it at all." She looked thoughtful. "I've done quite a lot of think about how I've treated people who lived in the world with me. In any way. And I concluded that I had somehow worked out a place that I didn't feel I had given away anything unsafe. But that I was still able to perform satisfactory."
"You got good reviews on your jobs," I said. "And you've had some good friends in your life."
"Mm-hmm," Jane agreed. "I got some unexpectedly positive responses to the kind of things I was doing with people, even those I didn't know very well, either. But I was asked to help. And I didn't plan to make them feel that way. When I worked with someone, I planned to do what was fair for him. "
"You have tried to do right by people," I agreed
"Better by some people than others," she said, smiling wryly. "But I don't think I had a reputation for being a difficult person to work with. On the whole, I was considered OK."
"That's my strong impression," I said. "And you're getting back to that now, too."
"Take a little doing." She though a moment. "I hope it won't take me two sessions. I would like to get it the first time, but I'm not sure I can."
"However long it takes," I said firmly, "that's how long it takes. We'll give it the time it needs."
"Since everything else has taken a short time," she said, "I'm hoping this will, too. But it's much harder."
"Yeah, I agree. Would be for me, in your place."
Jane looked sad. "I just don't want it to happen to you. I don't want to get this going." She began laughing.
"I don't think it's catching," I said. "Or at least I hope not."
We shared a laugh.
For Jane to have to stop & think about something, at this stage in her recovery, usually means she'll get stuck. It's a bit like, "what's that?" -- pointing to something and asking her to name it. When things aren't in context, Jane still has trouble finding words or actions, though this is getting better, and getting better regularly.,
"I'm glad you think it's getting better," Jane said. "I think it's interminable,"
"In your position, I'd agree. But I don't just think it's getting better. I know. And the doctor and the therapist agree with me, too. As does Les."
Jane nodded. "The gal in my class (speech therapy) -- you know, speaking & writing, in which I'm awful -- she thinks I'm better."
"You are better, Jane," I said. "You are."
She laughed. "It wails the daylights out of me that Les will know a word instantly that I can't speak. My daughter, for Pete's sake."
"That galls you, doesn’t it?"
She nodded. "We went over a bunch of words the other day, and I couldn't get any of them. Les got them all." She laughed. "I asked if she had any trouble, and she said, 'no,' as if I had asked a stupid question."
It's more than just old sequences are coming back. Jane is initiating things; she doesn't just stare, like Martin Luther's cow, hoping the barn door will open. She goes about making things happen.
One major first maybe three weeks ago: she was upset about something, I forget what. And Les & I were hurrying around with whatever busy-nesses we thought had to be taken care of, and probably did. I looked over, and there Jane was, sitting on the couch, eating a piece of cake.
Jane began laughing.
"Where did you get that cake?" I asked.
"I wasn't feeling too good," she said, "so I thought I'd get a piece of cake."
Sugar as comfort has long been one of Jane's major coping styles. This was, however, the first time she recognized a food need -- that, in itself, an improvement, in that she is still reconnecting her mind & her body. She then remembered there was a chocolate cake that Barbara had brought down for Mother's Day, and that we'd put it in the refrigerator. She got it, then got out a plate & fork, brought it to the couch, where she sat down & ate it.
That might not seem remarkable, but it brought together so many things beyond remembering where things were. More & more, Jane is trying to take steps not just to care for herself, but to make her life better. And that is huge, since that's one of the engines that drives her motivation, her recovery.
Jane nodded.
The other engine, of course, is the love she feels for her family, and wanting to improve, not just for herself, but for us.
Again, she nodded. "Oh, boy, I worry about you. Sometimes I feel right down sick about you.
"Why?" I asked.
"Because I want you to have a life."
"I do have a life," I said firmly. "With you."
She smiled. " Right. One thing helps, and it's just begun to help. If I am with you, in a place where I certainly would have been before the accident. Or if now, sort of by accident... just turned up being with you, and you were listening to someone else talk, and they were talking about something beyond anything I'm reading now, I'm able to do fairly well listening. I don't feel so embarrassed about being there any more."
"Ah," I said. "That's a bit step."
"I don't know that I always... get exactly what they are saying. But I get enough when I get by."
"Last night," I said, "I read you that article about Jimmy Carter's work with disease in Africa."
"Mm-mm."
"And I had a sense that you were... more alert to what I was reading than you had been. I think that's improving."
"I think so, too," Jane agreed. "That's a fairly difficult article. It had an awful lot of stuff in it that most of us have very little knowledge of."
(There were a number of references to comparatively rare tropical diseases, and how they needed to be cured or contained.)
"Yes," I said. "That means, you're not just getting things back, you're also learning new things, too."
Jane nodded.
Today, we go up to Ed & Barbara's. Ed is home over Memorial Day to pack up his family and leave with them for Alabama.
We going to miss them. A lot.
With love,
avus & family
ETA: Oh, and while Jane & I were talking during our morning cuddle, she said, "Look at that critter."
I turned and saw, walking perhaps 20 yards up-mountain, a very large black bear.
Jane continues to improve, though she has some rough spots. (As always, our comments when I read them back to Jane, are in bold.)
Yesterday, Saturday, May 26th, my work schedule got all messed up, with one client showing up at a different time, and another who cancelled, calling to reschedule. The upshot was that I didn't make it home for lunch. I checked with Jane on this, and she reassured me that she understood and that it would be fine. And when I came home, nothing seemed amiss -- she was all smiles and I got the usual long hug.
On reading this, Jane said, "I felt OK."
But then she seemed to become more withdrawn. "I just felt so empty," she told me the next day. "And I got worried that I'd have that emptiness the rest of my life."
Part of this is we're waiting for Jane's new eye glasses, which should arrive next week. This has made reading much more difficult for her. And with reading more difficult, she has less she can do. Part of it, too, is Jane's improvement, meaning that she's more aware of what she can't do.
At this, Jane nodded.
"I can't spell any more," she said this morning. "It's not like I used to be."
"You mean you have trouble recognizing word you used to know?" I asked.
"Yes," she said, "and I've got so much I have to learn."
I explain that it's not learning, as in learning everything anew, though there will be some of that. I firmly believe that Jane still has, somewhere in her brain, her mind, all the words she used to have.
Jane nodded. "I have them in the other... the opposite side of my top arrangement."
"I agree," I said.
Jane certainly has some good access to much of her extensive vocabulary. I'm not trimming my vocabulary when I speak with her, and she recognizes the words. So all that good stuff is still in there.
But we need to find ways so Jane can reach it reliably.
That's certainly improving. But Jane is a long way from where she used to be, and sometimes that's profoundly discouraging.
Again, Jane nodded.
What set her off happened as we sat down for supper. Again, as the last time when I didn't make it home for lunch, this about a month ago, she looked at me and asked,
"Isn't he coming in to sit down with us?"
Jane started laughing.
"Who," I asked.
"The man who came home from work," she said.
"I'm the man I came home from work," I said, feeling uneasy.
Jane's laugh continued to increase. "It's only funny afterward."
"But you," I said, "that you can find it funny, is one of the most important skills you have. And I think you have your mother to thank for it."
"Oh, Lord," she said, laughing even more, "could well be. I felt horrible about it last night."
"No, the man who sleeps here," Jane insisted.
"Jane," I said, hoping to stave off a repeat of her terror, "I'm Dave; I'm your husband. I'm the one who sleeps here."
I could see it in her eyes: she realized her confusion. As she said the next morning, it was the last straw in a difficult day. She burst into tears, and didn't want either to talk about it or to be consoled.
We went to be early, which was fine with me, and we cuddled wordlessly for a long time.
The next morning, as usual, she was better, and she, on her own initiative, explained what happened to her. When I offered the idea that this may have been because I didn't come home for lunch, she pushed that aside. "I don't think that's it."
But I insisted. "I think it's really hard for you to be separate from me."
"That's certainly true," she responded, "and I hope I get over it."
"Yes," I agreed, "but I don't want you to get over wanting to have me around."
Jane laughed.
She chuckled. The idea was so silly as to need no comment.
"I think when I'm not around," I said, "you're a lot more likely to feel empty."
Jane agreed. "And I don't understand why I should be that way."
"When you hit your head, more than just your words, your speech got mixed up." I paused. This is still hard to explain -- I'm still trying to find the right words for it.
"I didn't used to be like this," Jane offered. "I don't think I used to worry when you weren't around."
"You didn't," I reassured her. "You didn't mind when you went to work, or when I went to work." I paused again, still searching for the right words, and still dissatisfied. I decided to go ahead anyway. "I believe that you were securely bonded to your father."
"Oh, yes," Jane agreed. "No question."
"And you could take that love, your father loving you, with you, even when your father was there. When your father went out to farm, you still felt loved by him."
"Right," she said.
"And when you went to school, you didn't lose your sense of being loved by him."
"No," she said, "that's right."
"And that was true when we first got together," I said. "You didn't lose the sense of being loved when I wasn't around."
"That makes sense."
"And that," I said, "is part of what you lost when you hit your head. That holding onto me, to us, to our love, even when I'm not there -- that's what really rattles you."
Jane nodded with a serious look on her face.
"I do get silly when you're not around," she said, "especially if I don't know when you're coming home."
"Jane, you always know when I'm coming home. I think it's hard, even when you know, that I'm not there."
Jane chuckled.
"That's what I want to get over," she said.
Now came the hard part, the part where the words don't fit yet, don't quite make the sense I wanted them to. "When you have trouble hanging onto our love, our being together and not having to worry about that.... It's more than just worrying about us." I frowned. "You also feel empty, because when you can't get to us, you can't get to yourself, either. You need us to get to yourself."
Again, Jane nodded.
Jane looked thoughtful. "That may be right."
There are the usual Jane firsts, signs of improvement. Just a couple of examples. This morning, I asked Jane to make me an extra piece of toast, which of course, she did. But that meant pulling out the toaster oven tray farther than usual, and it got stuck. With no hesitation, she gave the grill tray an extra couple of shoves, with the right amount of effort, until it went back in. A sequence returned when she had need. Yesterday or the day before yesterday, at breakfast when she checked in the refrigerator and found we were out of jam, she went to the cabinet where we have always stored the next jam, pulled it out, and opened it.
Old sequences are definitely coming back. Probably more than I realize, and certainly more than Jane realizes. Because if I'm not around, and if I'm not noticing, it's easy to let those slip by. And since Jane does it automatically, she doesn't realize what she's done, either.
"Yeah," Jane said.
"That must be very frustrating," I said.
Jane began to laugh. "Listen. Even since I can remember through high school, I was head of the class. I was not stuck."
"And now you are," I said.
"And now I am."
"And you don't like it," I said, taking my cue from her face.
"No, she said, laughing again, "I don't like it at all." She looked thoughtful. "I've done quite a lot of think about how I've treated people who lived in the world with me. In any way. And I concluded that I had somehow worked out a place that I didn't feel I had given away anything unsafe. But that I was still able to perform satisfactory."
"You got good reviews on your jobs," I said. "And you've had some good friends in your life."
"Mm-hmm," Jane agreed. "I got some unexpectedly positive responses to the kind of things I was doing with people, even those I didn't know very well, either. But I was asked to help. And I didn't plan to make them feel that way. When I worked with someone, I planned to do what was fair for him. "
"You have tried to do right by people," I agreed
"Better by some people than others," she said, smiling wryly. "But I don't think I had a reputation for being a difficult person to work with. On the whole, I was considered OK."
"That's my strong impression," I said. "And you're getting back to that now, too."
"Take a little doing." She though a moment. "I hope it won't take me two sessions. I would like to get it the first time, but I'm not sure I can."
"However long it takes," I said firmly, "that's how long it takes. We'll give it the time it needs."
"Since everything else has taken a short time," she said, "I'm hoping this will, too. But it's much harder."
"Yeah, I agree. Would be for me, in your place."
Jane looked sad. "I just don't want it to happen to you. I don't want to get this going." She began laughing.
"I don't think it's catching," I said. "Or at least I hope not."
We shared a laugh.
For Jane to have to stop & think about something, at this stage in her recovery, usually means she'll get stuck. It's a bit like, "what's that?" -- pointing to something and asking her to name it. When things aren't in context, Jane still has trouble finding words or actions, though this is getting better, and getting better regularly.,
"I'm glad you think it's getting better," Jane said. "I think it's interminable,"
"In your position, I'd agree. But I don't just think it's getting better. I know. And the doctor and the therapist agree with me, too. As does Les."
Jane nodded. "The gal in my class (speech therapy) -- you know, speaking & writing, in which I'm awful -- she thinks I'm better."
"You are better, Jane," I said. "You are."
She laughed. "It wails the daylights out of me that Les will know a word instantly that I can't speak. My daughter, for Pete's sake."
"That galls you, doesn’t it?"
She nodded. "We went over a bunch of words the other day, and I couldn't get any of them. Les got them all." She laughed. "I asked if she had any trouble, and she said, 'no,' as if I had asked a stupid question."
It's more than just old sequences are coming back. Jane is initiating things; she doesn't just stare, like Martin Luther's cow, hoping the barn door will open. She goes about making things happen.
One major first maybe three weeks ago: she was upset about something, I forget what. And Les & I were hurrying around with whatever busy-nesses we thought had to be taken care of, and probably did. I looked over, and there Jane was, sitting on the couch, eating a piece of cake.
Jane began laughing.
"Where did you get that cake?" I asked.
"I wasn't feeling too good," she said, "so I thought I'd get a piece of cake."
Sugar as comfort has long been one of Jane's major coping styles. This was, however, the first time she recognized a food need -- that, in itself, an improvement, in that she is still reconnecting her mind & her body. She then remembered there was a chocolate cake that Barbara had brought down for Mother's Day, and that we'd put it in the refrigerator. She got it, then got out a plate & fork, brought it to the couch, where she sat down & ate it.
That might not seem remarkable, but it brought together so many things beyond remembering where things were. More & more, Jane is trying to take steps not just to care for herself, but to make her life better. And that is huge, since that's one of the engines that drives her motivation, her recovery.
Jane nodded.
The other engine, of course, is the love she feels for her family, and wanting to improve, not just for herself, but for us.
Again, she nodded. "Oh, boy, I worry about you. Sometimes I feel right down sick about you.
"Why?" I asked.
"Because I want you to have a life."
"I do have a life," I said firmly. "With you."
She smiled. " Right. One thing helps, and it's just begun to help. If I am with you, in a place where I certainly would have been before the accident. Or if now, sort of by accident... just turned up being with you, and you were listening to someone else talk, and they were talking about something beyond anything I'm reading now, I'm able to do fairly well listening. I don't feel so embarrassed about being there any more."
"Ah," I said. "That's a bit step."
"I don't know that I always... get exactly what they are saying. But I get enough when I get by."
"Last night," I said, "I read you that article about Jimmy Carter's work with disease in Africa."
"Mm-mm."
"And I had a sense that you were... more alert to what I was reading than you had been. I think that's improving."
"I think so, too," Jane agreed. "That's a fairly difficult article. It had an awful lot of stuff in it that most of us have very little knowledge of."
(There were a number of references to comparatively rare tropical diseases, and how they needed to be cured or contained.)
"Yes," I said. "That means, you're not just getting things back, you're also learning new things, too."
Jane nodded.
Today, we go up to Ed & Barbara's. Ed is home over Memorial Day to pack up his family and leave with them for Alabama.
We going to miss them. A lot.
With love,
avus & family
ETA: Oh, and while Jane & I were talking during our morning cuddle, she said, "Look at that critter."
I turned and saw, walking perhaps 20 yards up-mountain, a very large black bear.