Sorry I worried some people when I didn’t post Friday. I got too tired out to finish what I had been writing.
Friday April 28, 2006 (9:47am)
A scattering of thoughts, as they occur to me:
I guess I’m going to have to get used to things yo-yo-ing. Gary was a little groggy during the later visits last night, but otherwise seemed fine. I had been hoping for things to always move in a forward direction, so didn’t like hearing about any new problems. I received reassurances from my email friend Vicki and also from my brother Joe, who at one time was a med tech and so hung out in a hospital, that pneumonia wasn’t at all that unusual in Gary’s situation and that it wasn’t something to panic about. It’s just that I hate seeing Gary lie there, me feeling helpless to do anything to make him all better, or at least to not let things get any worse.
Speaking of Joe, he and his wife Dolores have a home remodeling business in Colorado, and have offered to help make our house accessible for when Gary comes home (now it’s official, Joey, and you can’t weasel out ;-)). Dolores worked with accessibility issues when she was a real estate agent in Florida, so will also have information on that. My brother-in-law John has a brother who was in a car accident that put him in a wheelchair when he was around twenty, if I remember that age right, and who, again if I’m remembering correctly, has helped construct accessible homes, so there is another possible resource. I know a neighbor of ours also had her home re-designed for wheelchair accessibility so I hope we can tap her for local information. Phil has offered an electric wheelchair for use if we want it. I imagine when Gary gets into therapy they’ll be telling us more about what needs to be done to the house.
It’s way too early to say what Gary will or won’t be able to do. I sure hope he’s going to be able to lift himself, as the physical therapist believes he will, because I know I won’t be able to do that. I joked to Gary we may both end up going around the house on motor scooters.
Gary’s hearing seemed even worse this morning. I walked in and raised my voice as usual, and he told me to repeat what I had said louder. (Unfortunately that resulted in my yelling so everyone up and down the hall could hear, “Hold on a second, I forgot to tie the drawstring on my pants, and they’re falling down.” I heard suspicious giggling coming from the nurse’s station.) Gary said the audiologists were supposed to see him again today, and I told the nurse to give them the message that I thought the hearing was worse. But they never showed up – I’m not sure Gary had the information correct. Later in the day a doctor told me that further testing would have to wait until Gary was off the ventilator and able to sit up in a wheel chair so they could take him down to a special soundproof booth. For now they were still hoping that once the fluid in the mastoid air cells was resorbed the problem would clear up on its own.
Gary wanted to know how the kitties are doing. I talked to Connie this morning, and she was going to the house to pick up the mail the neighbors have been bringing in so that she could send it on. She later reported that both kitties ran up to her for petting, even Blackjack (named because I like the assonance, not for the card game), who usually runs out the cat door or under the bed at the appearance of humans other than Gary, me, or for some reason my older sister – perhaps because her voice sounds similar to mine. Anyway, I was pleased to report to Gary the kitties are doing fine and haven’t left any “presents” for Connie to forward to us. (I was glad I remembered to tell Connie to do walk-throughs of the house – all we would need would be to come home to a houseful of decaying ground squirrels and lizards.)
We finished the morning by Gary shaving himself with the electric razor I bought. A nurse had shaved him with a safety razor days before and volunteered to do so again Thursday night, but Gary didn’t want her to – he’s afraid of being cut. For some reason she refused to do it with the electric razor – I didn’t understand the reason why. Anyway, she said I could do it the next morning with the electric razor. I said that would be an interesting experience, figuring I’d botch the job. But when I wielded the razor at him, he wanted to shave himself. Smart move on his part. He shaved by feel and only missed one spot. I guess if you do that for forty years you get the routine down without needing to look at yourself. He didn’t do the throat area, though, for fear of getting too close to the trache hole.
After that visit I took another jaunt out to Wal-Mart for doodads. The clock I had bought for Gary fell off the thermostat I had it propped up on, and the hands fell off. Seeing that the clock wasn’t keeping the correct time anyway, no great loss. I was hoping to avoid another trip out into the real world, but Gary gave me such a mournful look when I told him the clock was broken that I couldn’t not go out there. So I got him a new cheapo clock, trying out one with a square bottom. Unfortunately the top of the thermostat is rounded, so I don’t know if this will work any better. Gary had the idea of getting him a cheap light watch that we could tape to the cast on his right hand, so I bought him one and taped it to him. I also happened upon a dryboard and bought it in case he would prefer writing on that, but he didn’t, which is fine with me – this way I can keep the notes he writes.
It seems odd to me that they don’t have more “patient amenities” for those in the ICU. I know the physical care of the patients is well taken care of and of primary concern, but it seems to me that there are some simple things they could supply that would make recovery more comfortable. I brought my laptop holder (aka “bed table”) from home to set things on so Gary could write or read, etc. I’ve had a couple of enquiries from other people asking where I got it so they could get one for their family member as well. Seems like that could be made standard equipment. And I know many other patients here are on ventilators and cannot talk – seems like it should be SOP (standard operating procedure) to aid them immediately with printed out alphabets instead of people having to think of that on their own. The only reason the speech therapist came by and made the suggestion of pointing to the letters of the alphabet was because of Gary’s hearing loss, but that happened days after he’d been there and his inability to communicate verbally wasn’t because of that.
After writing the above, when I walked in for the early evening visit, I found Gary’s new clock had been hung up on an IV stand near the end of his bed (okay, to be honest I didn’t notice it right away, but I did discover it later when I looked to see what time it was). I made the comments I wrote above to Gary, and the nurse overheard me. She came in and said she agreed with me, and that I should make my suggestions to the nurse manager. She also thought there was a place on the UAB webpage where I could leave such comments. She said whoever had been designing the rooms had been thinking of the staff, not the patients, and that the clock was convenient for them, but that there should be a second clock for the patients. She also said that most patients on the ward were not aware enough to communicate, many in comas, but that there were always a few like Gary who were able to communicate, so she also thought bed tables should be standard equipment.
Got the mail at the 2:30 visit. Thanks to David Turner, J.P. and Pam Holmes, and the parents of Gary’s sister-in-law, Daniel and Lydia Munoz.
We tried out a few local visitors at the 2:30 visit: Mike O’Farrell, who was a grad student at Auburn the same time I was and who now lives in Huntsville (he also brought his wife, Carmen); John Mayer and Lex Oversteegen, mathematicians at UAB. Gary was happy to see them. John recommended biographies of John Adams and Oppenheimer if Gary wanted some ideas for books to read. John also brought a Calvin and Hobbes book, which Gary said was more his speed right now. Gary was whipping his pen around the alphabet board so fast I had a hard time keeping up. When Mike came in for the second fifteen minutes (they only allow three visitors at a time, and since I didn’t graciously allow it to be the three of them . . . ), I was a little worried at first. Mike has always been soft-spoken, and couldn’t speak loud enough for Gary to hear. I thought I might have to repeat everything Mike was saying, but the two of them decided to just write each other their conversation, so that worked out fine. All the visitors mentioned Gary looked good, and they could see what I meant about him still being Gary.
One thing that Gary is confused about, and which I don’t know how to help him with, is how to balance his day’s activities. He likes to have the visitors, says they really lift his spirits. He enjoys doing Sudoku and the little reading he does. Now the physical therapist has given him an exercise band to pull on with his left arm for a little exercise (again without any instructions as to how often for how long). But he also knows he should rest. I asked the nurse if there was someone we could talk to about how to balance his activities, and she put in an order for a consult with one of the hospital social workers. To me that really didn’t seem to be who we should talk to about this. Gary said he would talk to the physical therapist about it when he sees her on Monday, and I will continue to ask every nurse that is caring for him (since that regularly changes and they don’t alway give the same advice) and every doctor of his that I run into. (Note: I told the nurse about this on Sat. morning, and she said that as long as he was sleeping well at night, he could do as much of the non-resting activities as he was comfortable with – that reassured him.)
Note to anyone who stays at the Marriott long enough to run out of underwear so you have to do laundry: bring lots of change. The clothes dryer is pathetic; you will probably have to spend at least $3 to get your clothes dry. A dollar gets you half an hour. I spent that and am letting the clothes finish drying somewhere in the room. I’ll probably find them again some day – my room looks like the wreck of the Hesperus, as my mother would say.
Speaking of change, you might also want to bring lots for the panhandlers in the vicinity. One came up to me when I was waiting in front of the Marriott for my sister to pull up in the rental car and deposit my mom. I stood there like a deer frozen in the headlights as this guy said a lot of things I couldn’t make out. I did get that he wanted $5 from me. I gave him a buck. He cursed me. I felt like saying, “Hey, I’m a Daniels. We don’t give out five dollar bills.” (Probably a line only my family will appreciate – the Scott in us makes us frugal. Well, Gary says he is frugal and I am extremely frugal – I think that was his polite way of saying I'm miserly.) When I went out for a walk a couple days ago someone else asked for money. That time I had left my purse in the hotel so I could honestly say I didn’t have a penny on me. I never have figured out the proper response to panhandlers.
I couldn’t quite persuade the chiropractor to accommodate my schedule, but Gary said for me to take care of me, so I will have to skip a visit with him on Monday in order to see her. :-(
(Yes, I know this is another paragraph that just seems stuck in. Get used to it.)
Something that amused me today. I called Jo to give her some information. I had to spell something out (literally) and she mistook an “n” for an “m.” I said, “No, ‘n’ as in . . .” – my mind went black and then I said the first word that came to me. “Not.” There was a pause and then Jo said, “That starts with a ‘k.’”
I forgot I was talking to a topologist.
Okay, some stuff on me, now, so you may want to skip to the next Gary part. ;-) Some people have wondered if, or said they hoped that, I am doing as well as my writing about this experience seems to indicate I am (actually I figured my writing might be leading you to think I had flipped out). I think I am holding up pretty well – I guess we’ll find out as time goes on. The hardest part was the first four days. I was afraid Gary could still die on me, and I felt so all alone, even though I knew both our families were with us in spirit. I could hardly get a word out those days without crying, even though I did my best not to do that when I was in the room with Gary – I didn’t always succeed there. The worst time in that regard was Easter Sunday and I was reading the paper to him. I would give him the title of an article, maybe read out a few sentences, and ask him if he wanted me to read out the entire article. He wanted me to continue with one about Easter and Resurrection in the Life section. I could barely get through it. The gist was how Good Friday (the day of Gary’s accident) was a time of darkness and death, and Easter was new life. All I could think was the person who wrote this couldn’t possibly have experienced the type of thing I was experiencing, that his words were meaningless, that there would be no resurrection here. I took no comfort in the words I was reading, and I couldn’t imagine that Gary was either. I wanted to ask Gary if he really wanted me to continue reading this, what with me crying all through it, but he just kept patting my hand (who was comforting who?), so I continued reading.
Sometimes when I start thinking about what’s happened, or when I write this blog, tears still come to my eyes. And I can’t promise that if I talk to you you won’t occasionally hear the tears in my voice. But it’s not as overwhelming as it was at first. Then it was almost unreal, unbelievable that this was happening, surely it was a bad dream from which I would wake up and find Gary just as he was before; or if he had really been hurt a little, it would soon be over and he would be walking out of the hospital with me.
Once it seemed clear that he was going to survive with his mind intact I felt I could handle anything else that was to come (although when at a visit he seems a little worse than the previous one, the anxieties creep in). I am very glad he has the use of his arms. Otherwise, I think this would have been hundreds of times harder, and if he’d died or been a vegetable I don’t know how I could have borne it. But I guess I would have had little choice to do otherwise.
I’ve only once asked the question, “Why did this have to happen to the most wonderful person I’ve ever known?” because I know there is no answer to that. Oddly, though I never thought I’d be thanking having CFS for anything, I may be thanking it for helping me cope now. I’ve already been through my own life-changing experience, one that was out of my control: it seemed like such a cruel joke – take someone who prided herself on her mental and physical abilities, destroy those abilities, and top it off with chronic pain and fatigue. It was years before things stopped getting worse and more years before thing started to turn around at all (I came down with this in June ’92). But I still no longer have the brain power to pursue something such as my former passion of math, nor the physical stamina for much activity. In recent years I finally got to the point where physically I could handle a little gardening, and that became a new passion. But I deeply missed the creativity of using my mind in something like math research (what I always loved most about research was how my mind worked, not the problem per se), and I mourned that loss continually – it wasn’t something I could get away from. Until fairly recently I didn’t even have the concentrative power to read a book – I’d keep reading the same paragraph over and over again, not able to take it in. But couple years ago, something happened, I can’t say why, though I suspect it has to do with the antigen shots I had been giving myself daily as a result of going to the Environmental Health Center in Dallas, one of a number of treatment protocols I tried, and ironically, the one I was most sure was a complete waste of money but was desperate enough to try. Anyway, I suddenly noticed that I could concentrate better – I could read again. By accident I found a small group on the web that wrote a particular kind of fiction that I enjoyed reading – fanfiction about Remington Steele, meaning stories written using the characters of that TV show, which I’m sure the vast majority of people would find pretty silly, but is my guilty pleasure, and hey, it breathed new life into me. I made a comment one time on the fanfic list about something someone had said, saying wouldn’t such and such be an interesting story line, and someone said, well, why don’t you write the story. My first reaction was, “because I can’t write.” But then I thought, what the heck, surely I can do it better than some of the ones I’ve read (Peg says arrogantly ;-)). Thus began my new passion. So I wrote some short pieces, and then over a year ago I wrote the first draft of a novellete-length such piece of fanfic. But I felt it didn’t have the emotional impact I wanted it to, so I asked the neighbor behind us, an English professor, if she could suggest a way I could improve on my writing, given the restriction that I wouldn’t be able to take a class. She pointed me to the local writing critique group that had just started up. So I wrote them an email saying I was interested in joining their group and listing all the reasons why they probably wouldn’t want to let me into it (I’m a beginner writer, my background is math, I don’t know if I have the stamina to attend the meetings, and what I write is just fanfic). They were desperate enough for another member (the “group” consisted of two English faculty members at the time) that they invited me to one of their meetings. (I found out later their biggest reservation to letting me join was that my background was math :-).) Through their suggestions I improved the story, and they told me to try to write one with original characters, instead of using someone else’s. So that is what I am trying to do now, though I’ve discovered it is a heck of a lot harder, and if my critique group ever sees the result, they may tell me to go back to writing fanfic ;-).
So at last I’ve found something that dovetails with what my mind and body can handle (and thankfully mind and body can handle more than they could there for a long while). I can once again have that same aha! experience I had in creating math, only this time it comes when I write a sentence I like or work out a plot point. Sometimes it seems a little silly because I spend all this time on something that may never be read by more than a small group of people, but Gary always told me that first of all, the important thing was that I enjoyed doing it, that second of all, probably more people had read my stories than had read both of our math papers combined, and third of all, maybe some day I’d write a script for a movie and make us a million bucks. Hmm. I liked his reasoning until he got to number three, as I’m highly doubtful of that (he assured me he didn’t expect that . . . but that it would be nice).
It took time – too much (ironic grin), a heck of a lot longer than three days – but I’ve had my own death and resurrection experience. (I guess that Sunday article held some meaning after all, but I couldn’t see it this past Easter, not for Gary.)
So if you’re still with me, my point is that in terms of my being able to handle this, I’ve already gone through an experience that has parallels to what has happened to him. Life goes on and you find ways to deal with the new givens, even if it takes time (and even if you bitch about it occasionally). I believe Gary is a strong person, and I believe he’ll find his way to make the best of the situation. That helps me deal with it. I wish he didn’t have to go through this, and I am hoping he won’t find the transformation into his new life as painful as I did. My main concern, as I’m sure it is for all of you, is for him to keep his spirits up; I don’t want this to break his spirit. He still has his mental abilities, so he can continue doing what he has loved all these years, the math and the teaching, so that’s one of the most important pluses.
Oops. I see I’ve spent quite a bit of time talking about myself here. Let me finish this part by saying I also want you to know it helps me tremendously to know that there are people out there who are concerned for us. And I have tangible proof – I open my email and look at my inbox :-), which I am way behind in replying to. (A consequence of my “dependency,” however, is I nearly had a panic attack the day the service provider here went down for half a day (okay, a “panic attack” is a bit of an exaggeration, but I did feel “cut off”)).
Well, I thought I was finished with the above topic, but coincidently, Gary told me last night after I had written the above that he thought he had already mentioned how impressed he was with how I have been dealing with this stuff (not that I feel all that impressive), and how grateful he was, but also how sorry he was for making me deal with this stuff. At which point we both burst into tears. I told him I knew it was an accident, something out of our control, just like my having CFS has been and I had always been sorry that he had to deal with a wife who has that (many spouses leave their partners who have the illness). I told him the hardest part of him having the accident was over, because I had been afraid he was going to die. He said he had been too. I told him we could deal with whatever had to be done now, and that the most important thing was for him to keep his spirits up, that he had so many people out there rooting for him, and that Jack and Michel had been writing me about how they were going to do everything possible to get him back to teaching as soon as he was ready for it. I could tell this really meant a great deal to him. He also tapped out “I’m not Superman.” I missed the reference and told him I hated to inform him that he never was. He said neither was Christopher Reeve until he became quadriplegic, and then his life was heroic. I didn’t want Gary to put any pressure on himself, so I told him no matter what, he was always my hero.
April 29, 2006 (1:52pm)
At this morning’s visit, Gary again wanted to resume writing the letter to Norma, because he doesn’t think it’s realistic to go on such a complicated trip so early, and because, he said, we would need the time to get our house wheelchair friendly and to take care of the things that need to be done so he could return to teaching in the fall (that was good to hear, that he’s got it foremost in his mind that he’s going to be right back in the thick of things ASAP). I asked the nurse about it, still reluctant for Gary to give up this trip with his family, and she paged the doctor on call. He said medically it would be likely Gary could physically make the trip, but being in a wheelchair was going to be a new experience for him as it was, so he probably wouldn’t enjoy the trip as much as he would a year from now – he wouldn’t be able to do much, it might be frustrating, etc. So I think it’s likely he’s cancelling his part in the cruise, unless I get back there this afternoon to find he’s changed his mind. (I doubt that though.) When I left him he was writing a letter to Norma. This is the first time he has attempted to write anything totally without my help in holding the paper, getting out new sheets of paper, etc., so I take it as a positive sign. I only hope I can read what he writes. :-)
Friday April 28, 2006 (9:47am)
A scattering of thoughts, as they occur to me:
I guess I’m going to have to get used to things yo-yo-ing. Gary was a little groggy during the later visits last night, but otherwise seemed fine. I had been hoping for things to always move in a forward direction, so didn’t like hearing about any new problems. I received reassurances from my email friend Vicki and also from my brother Joe, who at one time was a med tech and so hung out in a hospital, that pneumonia wasn’t at all that unusual in Gary’s situation and that it wasn’t something to panic about. It’s just that I hate seeing Gary lie there, me feeling helpless to do anything to make him all better, or at least to not let things get any worse.
Speaking of Joe, he and his wife Dolores have a home remodeling business in Colorado, and have offered to help make our house accessible for when Gary comes home (now it’s official, Joey, and you can’t weasel out ;-)). Dolores worked with accessibility issues when she was a real estate agent in Florida, so will also have information on that. My brother-in-law John has a brother who was in a car accident that put him in a wheelchair when he was around twenty, if I remember that age right, and who, again if I’m remembering correctly, has helped construct accessible homes, so there is another possible resource. I know a neighbor of ours also had her home re-designed for wheelchair accessibility so I hope we can tap her for local information. Phil has offered an electric wheelchair for use if we want it. I imagine when Gary gets into therapy they’ll be telling us more about what needs to be done to the house.
It’s way too early to say what Gary will or won’t be able to do. I sure hope he’s going to be able to lift himself, as the physical therapist believes he will, because I know I won’t be able to do that. I joked to Gary we may both end up going around the house on motor scooters.
Gary’s hearing seemed even worse this morning. I walked in and raised my voice as usual, and he told me to repeat what I had said louder. (Unfortunately that resulted in my yelling so everyone up and down the hall could hear, “Hold on a second, I forgot to tie the drawstring on my pants, and they’re falling down.” I heard suspicious giggling coming from the nurse’s station.) Gary said the audiologists were supposed to see him again today, and I told the nurse to give them the message that I thought the hearing was worse. But they never showed up – I’m not sure Gary had the information correct. Later in the day a doctor told me that further testing would have to wait until Gary was off the ventilator and able to sit up in a wheel chair so they could take him down to a special soundproof booth. For now they were still hoping that once the fluid in the mastoid air cells was resorbed the problem would clear up on its own.
Gary wanted to know how the kitties are doing. I talked to Connie this morning, and she was going to the house to pick up the mail the neighbors have been bringing in so that she could send it on. She later reported that both kitties ran up to her for petting, even Blackjack (named because I like the assonance, not for the card game), who usually runs out the cat door or under the bed at the appearance of humans other than Gary, me, or for some reason my older sister – perhaps because her voice sounds similar to mine. Anyway, I was pleased to report to Gary the kitties are doing fine and haven’t left any “presents” for Connie to forward to us. (I was glad I remembered to tell Connie to do walk-throughs of the house – all we would need would be to come home to a houseful of decaying ground squirrels and lizards.)
We finished the morning by Gary shaving himself with the electric razor I bought. A nurse had shaved him with a safety razor days before and volunteered to do so again Thursday night, but Gary didn’t want her to – he’s afraid of being cut. For some reason she refused to do it with the electric razor – I didn’t understand the reason why. Anyway, she said I could do it the next morning with the electric razor. I said that would be an interesting experience, figuring I’d botch the job. But when I wielded the razor at him, he wanted to shave himself. Smart move on his part. He shaved by feel and only missed one spot. I guess if you do that for forty years you get the routine down without needing to look at yourself. He didn’t do the throat area, though, for fear of getting too close to the trache hole.
After that visit I took another jaunt out to Wal-Mart for doodads. The clock I had bought for Gary fell off the thermostat I had it propped up on, and the hands fell off. Seeing that the clock wasn’t keeping the correct time anyway, no great loss. I was hoping to avoid another trip out into the real world, but Gary gave me such a mournful look when I told him the clock was broken that I couldn’t not go out there. So I got him a new cheapo clock, trying out one with a square bottom. Unfortunately the top of the thermostat is rounded, so I don’t know if this will work any better. Gary had the idea of getting him a cheap light watch that we could tape to the cast on his right hand, so I bought him one and taped it to him. I also happened upon a dryboard and bought it in case he would prefer writing on that, but he didn’t, which is fine with me – this way I can keep the notes he writes.
It seems odd to me that they don’t have more “patient amenities” for those in the ICU. I know the physical care of the patients is well taken care of and of primary concern, but it seems to me that there are some simple things they could supply that would make recovery more comfortable. I brought my laptop holder (aka “bed table”) from home to set things on so Gary could write or read, etc. I’ve had a couple of enquiries from other people asking where I got it so they could get one for their family member as well. Seems like that could be made standard equipment. And I know many other patients here are on ventilators and cannot talk – seems like it should be SOP (standard operating procedure) to aid them immediately with printed out alphabets instead of people having to think of that on their own. The only reason the speech therapist came by and made the suggestion of pointing to the letters of the alphabet was because of Gary’s hearing loss, but that happened days after he’d been there and his inability to communicate verbally wasn’t because of that.
After writing the above, when I walked in for the early evening visit, I found Gary’s new clock had been hung up on an IV stand near the end of his bed (okay, to be honest I didn’t notice it right away, but I did discover it later when I looked to see what time it was). I made the comments I wrote above to Gary, and the nurse overheard me. She came in and said she agreed with me, and that I should make my suggestions to the nurse manager. She also thought there was a place on the UAB webpage where I could leave such comments. She said whoever had been designing the rooms had been thinking of the staff, not the patients, and that the clock was convenient for them, but that there should be a second clock for the patients. She also said that most patients on the ward were not aware enough to communicate, many in comas, but that there were always a few like Gary who were able to communicate, so she also thought bed tables should be standard equipment.
Got the mail at the 2:30 visit. Thanks to David Turner, J.P. and Pam Holmes, and the parents of Gary’s sister-in-law, Daniel and Lydia Munoz.
We tried out a few local visitors at the 2:30 visit: Mike O’Farrell, who was a grad student at Auburn the same time I was and who now lives in Huntsville (he also brought his wife, Carmen); John Mayer and Lex Oversteegen, mathematicians at UAB. Gary was happy to see them. John recommended biographies of John Adams and Oppenheimer if Gary wanted some ideas for books to read. John also brought a Calvin and Hobbes book, which Gary said was more his speed right now. Gary was whipping his pen around the alphabet board so fast I had a hard time keeping up. When Mike came in for the second fifteen minutes (they only allow three visitors at a time, and since I didn’t graciously allow it to be the three of them . . . ), I was a little worried at first. Mike has always been soft-spoken, and couldn’t speak loud enough for Gary to hear. I thought I might have to repeat everything Mike was saying, but the two of them decided to just write each other their conversation, so that worked out fine. All the visitors mentioned Gary looked good, and they could see what I meant about him still being Gary.
One thing that Gary is confused about, and which I don’t know how to help him with, is how to balance his day’s activities. He likes to have the visitors, says they really lift his spirits. He enjoys doing Sudoku and the little reading he does. Now the physical therapist has given him an exercise band to pull on with his left arm for a little exercise (again without any instructions as to how often for how long). But he also knows he should rest. I asked the nurse if there was someone we could talk to about how to balance his activities, and she put in an order for a consult with one of the hospital social workers. To me that really didn’t seem to be who we should talk to about this. Gary said he would talk to the physical therapist about it when he sees her on Monday, and I will continue to ask every nurse that is caring for him (since that regularly changes and they don’t alway give the same advice) and every doctor of his that I run into. (Note: I told the nurse about this on Sat. morning, and she said that as long as he was sleeping well at night, he could do as much of the non-resting activities as he was comfortable with – that reassured him.)
Note to anyone who stays at the Marriott long enough to run out of underwear so you have to do laundry: bring lots of change. The clothes dryer is pathetic; you will probably have to spend at least $3 to get your clothes dry. A dollar gets you half an hour. I spent that and am letting the clothes finish drying somewhere in the room. I’ll probably find them again some day – my room looks like the wreck of the Hesperus, as my mother would say.
Speaking of change, you might also want to bring lots for the panhandlers in the vicinity. One came up to me when I was waiting in front of the Marriott for my sister to pull up in the rental car and deposit my mom. I stood there like a deer frozen in the headlights as this guy said a lot of things I couldn’t make out. I did get that he wanted $5 from me. I gave him a buck. He cursed me. I felt like saying, “Hey, I’m a Daniels. We don’t give out five dollar bills.” (Probably a line only my family will appreciate – the Scott in us makes us frugal. Well, Gary says he is frugal and I am extremely frugal – I think that was his polite way of saying I'm miserly.) When I went out for a walk a couple days ago someone else asked for money. That time I had left my purse in the hotel so I could honestly say I didn’t have a penny on me. I never have figured out the proper response to panhandlers.
I couldn’t quite persuade the chiropractor to accommodate my schedule, but Gary said for me to take care of me, so I will have to skip a visit with him on Monday in order to see her. :-(
(Yes, I know this is another paragraph that just seems stuck in. Get used to it.)
Something that amused me today. I called Jo to give her some information. I had to spell something out (literally) and she mistook an “n” for an “m.” I said, “No, ‘n’ as in . . .” – my mind went black and then I said the first word that came to me. “Not.” There was a pause and then Jo said, “That starts with a ‘k.’”
I forgot I was talking to a topologist.
Okay, some stuff on me, now, so you may want to skip to the next Gary part. ;-) Some people have wondered if, or said they hoped that, I am doing as well as my writing about this experience seems to indicate I am (actually I figured my writing might be leading you to think I had flipped out). I think I am holding up pretty well – I guess we’ll find out as time goes on. The hardest part was the first four days. I was afraid Gary could still die on me, and I felt so all alone, even though I knew both our families were with us in spirit. I could hardly get a word out those days without crying, even though I did my best not to do that when I was in the room with Gary – I didn’t always succeed there. The worst time in that regard was Easter Sunday and I was reading the paper to him. I would give him the title of an article, maybe read out a few sentences, and ask him if he wanted me to read out the entire article. He wanted me to continue with one about Easter and Resurrection in the Life section. I could barely get through it. The gist was how Good Friday (the day of Gary’s accident) was a time of darkness and death, and Easter was new life. All I could think was the person who wrote this couldn’t possibly have experienced the type of thing I was experiencing, that his words were meaningless, that there would be no resurrection here. I took no comfort in the words I was reading, and I couldn’t imagine that Gary was either. I wanted to ask Gary if he really wanted me to continue reading this, what with me crying all through it, but he just kept patting my hand (who was comforting who?), so I continued reading.
Sometimes when I start thinking about what’s happened, or when I write this blog, tears still come to my eyes. And I can’t promise that if I talk to you you won’t occasionally hear the tears in my voice. But it’s not as overwhelming as it was at first. Then it was almost unreal, unbelievable that this was happening, surely it was a bad dream from which I would wake up and find Gary just as he was before; or if he had really been hurt a little, it would soon be over and he would be walking out of the hospital with me.
Once it seemed clear that he was going to survive with his mind intact I felt I could handle anything else that was to come (although when at a visit he seems a little worse than the previous one, the anxieties creep in). I am very glad he has the use of his arms. Otherwise, I think this would have been hundreds of times harder, and if he’d died or been a vegetable I don’t know how I could have borne it. But I guess I would have had little choice to do otherwise.
I’ve only once asked the question, “Why did this have to happen to the most wonderful person I’ve ever known?” because I know there is no answer to that. Oddly, though I never thought I’d be thanking having CFS for anything, I may be thanking it for helping me cope now. I’ve already been through my own life-changing experience, one that was out of my control: it seemed like such a cruel joke – take someone who prided herself on her mental and physical abilities, destroy those abilities, and top it off with chronic pain and fatigue. It was years before things stopped getting worse and more years before thing started to turn around at all (I came down with this in June ’92). But I still no longer have the brain power to pursue something such as my former passion of math, nor the physical stamina for much activity. In recent years I finally got to the point where physically I could handle a little gardening, and that became a new passion. But I deeply missed the creativity of using my mind in something like math research (what I always loved most about research was how my mind worked, not the problem per se), and I mourned that loss continually – it wasn’t something I could get away from. Until fairly recently I didn’t even have the concentrative power to read a book – I’d keep reading the same paragraph over and over again, not able to take it in. But couple years ago, something happened, I can’t say why, though I suspect it has to do with the antigen shots I had been giving myself daily as a result of going to the Environmental Health Center in Dallas, one of a number of treatment protocols I tried, and ironically, the one I was most sure was a complete waste of money but was desperate enough to try. Anyway, I suddenly noticed that I could concentrate better – I could read again. By accident I found a small group on the web that wrote a particular kind of fiction that I enjoyed reading – fanfiction about Remington Steele, meaning stories written using the characters of that TV show, which I’m sure the vast majority of people would find pretty silly, but is my guilty pleasure, and hey, it breathed new life into me. I made a comment one time on the fanfic list about something someone had said, saying wouldn’t such and such be an interesting story line, and someone said, well, why don’t you write the story. My first reaction was, “because I can’t write.” But then I thought, what the heck, surely I can do it better than some of the ones I’ve read (Peg says arrogantly ;-)). Thus began my new passion. So I wrote some short pieces, and then over a year ago I wrote the first draft of a novellete-length such piece of fanfic. But I felt it didn’t have the emotional impact I wanted it to, so I asked the neighbor behind us, an English professor, if she could suggest a way I could improve on my writing, given the restriction that I wouldn’t be able to take a class. She pointed me to the local writing critique group that had just started up. So I wrote them an email saying I was interested in joining their group and listing all the reasons why they probably wouldn’t want to let me into it (I’m a beginner writer, my background is math, I don’t know if I have the stamina to attend the meetings, and what I write is just fanfic). They were desperate enough for another member (the “group” consisted of two English faculty members at the time) that they invited me to one of their meetings. (I found out later their biggest reservation to letting me join was that my background was math :-).) Through their suggestions I improved the story, and they told me to try to write one with original characters, instead of using someone else’s. So that is what I am trying to do now, though I’ve discovered it is a heck of a lot harder, and if my critique group ever sees the result, they may tell me to go back to writing fanfic ;-).
So at last I’ve found something that dovetails with what my mind and body can handle (and thankfully mind and body can handle more than they could there for a long while). I can once again have that same aha! experience I had in creating math, only this time it comes when I write a sentence I like or work out a plot point. Sometimes it seems a little silly because I spend all this time on something that may never be read by more than a small group of people, but Gary always told me that first of all, the important thing was that I enjoyed doing it, that second of all, probably more people had read my stories than had read both of our math papers combined, and third of all, maybe some day I’d write a script for a movie and make us a million bucks. Hmm. I liked his reasoning until he got to number three, as I’m highly doubtful of that (he assured me he didn’t expect that . . . but that it would be nice).
It took time – too much (ironic grin), a heck of a lot longer than three days – but I’ve had my own death and resurrection experience. (I guess that Sunday article held some meaning after all, but I couldn’t see it this past Easter, not for Gary.)
So if you’re still with me, my point is that in terms of my being able to handle this, I’ve already gone through an experience that has parallels to what has happened to him. Life goes on and you find ways to deal with the new givens, even if it takes time (and even if you bitch about it occasionally). I believe Gary is a strong person, and I believe he’ll find his way to make the best of the situation. That helps me deal with it. I wish he didn’t have to go through this, and I am hoping he won’t find the transformation into his new life as painful as I did. My main concern, as I’m sure it is for all of you, is for him to keep his spirits up; I don’t want this to break his spirit. He still has his mental abilities, so he can continue doing what he has loved all these years, the math and the teaching, so that’s one of the most important pluses.
Oops. I see I’ve spent quite a bit of time talking about myself here. Let me finish this part by saying I also want you to know it helps me tremendously to know that there are people out there who are concerned for us. And I have tangible proof – I open my email and look at my inbox :-), which I am way behind in replying to. (A consequence of my “dependency,” however, is I nearly had a panic attack the day the service provider here went down for half a day (okay, a “panic attack” is a bit of an exaggeration, but I did feel “cut off”)).
Well, I thought I was finished with the above topic, but coincidently, Gary told me last night after I had written the above that he thought he had already mentioned how impressed he was with how I have been dealing with this stuff (not that I feel all that impressive), and how grateful he was, but also how sorry he was for making me deal with this stuff. At which point we both burst into tears. I told him I knew it was an accident, something out of our control, just like my having CFS has been and I had always been sorry that he had to deal with a wife who has that (many spouses leave their partners who have the illness). I told him the hardest part of him having the accident was over, because I had been afraid he was going to die. He said he had been too. I told him we could deal with whatever had to be done now, and that the most important thing was for him to keep his spirits up, that he had so many people out there rooting for him, and that Jack and Michel had been writing me about how they were going to do everything possible to get him back to teaching as soon as he was ready for it. I could tell this really meant a great deal to him. He also tapped out “I’m not Superman.” I missed the reference and told him I hated to inform him that he never was. He said neither was Christopher Reeve until he became quadriplegic, and then his life was heroic. I didn’t want Gary to put any pressure on himself, so I told him no matter what, he was always my hero.
April 29, 2006 (1:52pm)
At this morning’s visit, Gary again wanted to resume writing the letter to Norma, because he doesn’t think it’s realistic to go on such a complicated trip so early, and because, he said, we would need the time to get our house wheelchair friendly and to take care of the things that need to be done so he could return to teaching in the fall (that was good to hear, that he’s got it foremost in his mind that he’s going to be right back in the thick of things ASAP). I asked the nurse about it, still reluctant for Gary to give up this trip with his family, and she paged the doctor on call. He said medically it would be likely Gary could physically make the trip, but being in a wheelchair was going to be a new experience for him as it was, so he probably wouldn’t enjoy the trip as much as he would a year from now – he wouldn’t be able to do much, it might be frustrating, etc. So I think it’s likely he’s cancelling his part in the cruise, unless I get back there this afternoon to find he’s changed his mind. (I doubt that though.) When I left him he was writing a letter to Norma. This is the first time he has attempted to write anything totally without my help in holding the paper, getting out new sheets of paper, etc., so I take it as a positive sign. I only hope I can read what he writes. :-)
posted by Peg Daniels at 1:28 PM
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