April 30, 2006 (9:00am)

Today’s stream:

I forgot to mention in the previous post: It also helps me cope with this to write about it, which is probably obvious!

Note to his family: I again conveyed to Gary that from the beginning you have been chomping at the bit to come see him. He still would rather you wait until he can talk to you, but he definitely feels your love and concern, have no doubt. (This was written before I talked to you, Donne.)

The rest of yesterday was pretty quiet. Gary was on the trache collar at the 5:30 visit and wanted to concentrate on his breathing, so I just read more Dylan to him. Near the end of the visit a sharp pain went through my left knee and my leg nearly collapsed under me – uh-oh, haven’t had that happen before. Glad I’m seeing the massage therapist today (Sunday) at noon. Also had a couple spells of light-headedness Saturday, also not something I usually experience, so will have to keep a watch on that.

Gary did “2 and 6" on the trache collar, meaning 2 hours on the trache collar alternated with 6 on the ventilator. I noticed he kept watching the clock during that early evening visit; since he’d told me they were supposed to put him back on the ventilator at 6pm I thought that might mean he was feeling the effect of all that breathing on his own, but he told me he felt pretty good during it. He has discovered the sessions go easier if he tries to nap for a while before they start. I was told that on Sunday they may bump him up to “4 and 4.” He looked a little dubious when I relayed that to him. I forgot to ask him if he was dubious because he didn’t think he was ready for that or because he didn’t believe the words of the medical personnel.

I felt a wave of depression when I went back to my hotel room Saturday night; haven’t had that happen before over this, but I know it’s a reasonable reaction. There was nothing in particular that caused it, just wondering what we were going to face when we got back home and in the future. I am looking forward to being back in my own bed and getting a decent night’s sleep and petting my kitties and getting back to my story-writing, but I know that’s still some time off.

At the Sunday morning 10:30 visit I asked Gary how he was doing – a former student of his, Alex Shibakov, and his wife Lauren were going to be visiting today so I wanted to make sure Gary was up for it. He said he was fine, just a little tired. I asked him if he’d slept okay during the night, and he said “no.” They had the trache collar on him at midnight for two hours, and he says he can’t really rest during that because it is harder to breathe with it on as opposed to being on the ventilator. Plus they turn him every two hours. To top it off they take an x-ray EVERY night at 3 am. I did not know that. I just don’t get the scheduling of such a procedure. The doc told Gary he was going to prescribe a drug so he can sleep better at night, and I’m thinking, “forget the damn drug, quit bugging him at 3am for an x-ray.”

At that visit Gary and I chatted a bit, listened to the book-on-tape for a while, and then it was time for me to go. What happened next, I debated not divulging, but since there are witnesses, I feel I must ’fess up. I went back to my hotel room, ate a little something, and then at 11:40, in preparation to leave for my massage at noon, reached into my purse for my car keys. No keys. Panic. After dumping everything out of my purse and searching to no avail, I had the horrible thought that I must have left them in the car ignition after returning from Wal-Mart. Two days ago. I left a garbled message on the massage therapist’s answering machine and then chugged my way to the parking garage, hoping no one had stolen the car. Fortunately it was still there, as were my keys, taunting me from the ignition. So near, and yet so far. I went into the sky deck area (which connects the parking garage area to the hospital and is where you pay your ticket at a machine) and talked to a woman manning a desk there. She gave me the number for “Pop-a-lock,” and I called them, unfortunately forgetting that we have AAA, and I could have had this service done for free. Pop-a-lock said they’d be there in forty minutes. I figured they were in the same time dimension as construction workers, so would be there in a couple of hours. Goodbye massage. I decided to chance that my car would be safe without me for another two minutes and started back to my hotel room to get a book to read while I was waiting at the car. While in transit, the massage therapist returned my call (I have now joined the 21st Century and own a cell phone as of last week). She attempted to calm me down, giving me the old New Age spiel of how nothing ever happens without a reason, etc., etc., words that I’d like to believe, but don’t always manage to. She thought we could still work in a massage, though I was dubious. She told me she had a nice warm table ready, soothing music going, and would give me a good massage. Sounded lovely. I ended the conversation feeling better, though I forgot to tell her I would probably be allergic to the scented candles :-)

So I guarded the car for about an hour when who should pull to a stop in front of me but Alex and Lauren, no doubt wondering what I was doing standing in the parking garage reading a book. They took a spot near me, and we talked a short time. Lauren said she could get my keys for me by breaking my window with a rock, but I declined her kind offer. I had Alex stand guard while I went inside to get the phone number of Pop-a-lock again and see what they were up to. The guy claimed to be a short distance away (13th and 3rd) and asked me how to get where I was, on 18th and 4th. I told them I didn’t know my way around Birmingham very well, but it seemed to me that if he went five blocks up to 18th and one block over to 4th, he would be here. :-) That conversation really inspired my confidence in his abilities. He took an inordinately long time to travel those few blocks, but he did get here. He popped the lock, and I rescued my keys and paid the $35 (I tried to get a discount because he was wearing an Auburn cap, but that didn’t work). Ah, well. It could have been worse. I could have locked the keys in the car and obliviously walked away with the motor still running, only to realize this when I returned to the car. I’ve done that as well. Dolores, even though I’m not quite old enough, can I pass this off as a “senior moment” too?

By this time it was too late for the massage, though the therapist told me to call after the 2:30 visit to see if something could still be arranged, depending on how things worked out with the other appointment she had scheduled for the afternoon. The Shibakovs and I moved to the hotel lobby and visited a bit before going over to the hospital. When Alex walked in for the visit, the first thing Gary tapped out was, “Can I get you a beer?” There was small talk for a short time – Alex offering Gary insights as to how he could get legally high by manipulating the push button on his painkiller dispenser – and then Gary turned to math. I was glad I figured out “Lindelöf” after the first four letters, cuz I don’t know how Gary would have communicated the umlaut ;-)

The time flew by quickly, and Alex and Lauren left with promises of coming back with coffee and chocolate for Gary when he was able to have it (great, with all that caffeine he’ll be buzzing around the room), and organic zuchinni for me.

I tried to call the massage therapist again, but there was no answer, so that was a bust for today. Oh, well. I’ve got the chiropractor tomorrow, and then my sister the massage therapist for Tues thru Fri.

At the 5:30 visitation, Gary was fast asleep, so I didn’t bother him. Unfortunately that meant the Currys didn’t get to say hello to him. They brought over their CD player and lots of classical music, so that will be great, especially because of all the TVs on the ward, Gary’s is the one that has broken, as of today. Maintenance didn’t see this as the emergency it is, so it will not be fixed until at least tomorrow. We are contemplating buying a DVD player if the TV isn’t fixed by tomorrow morning’s first visit; he needs a little something of that nature to occupy his time when he is not up to more active stuff like Sudoku and Calvin and Hobbes and Newsweek.

Well, it is getting late, so I will post this now. Wouldn’t want you to get worried like the last time you were when I failed in my duty to give you your daily update. :-)

Oh. Jamie wishes to correct my statement that the writing critique group could ever have been described as desperate for members. She says they only let the truly brilliant people in. Who am I to argue? :-)

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. :-)

April 27, 2006 (4:10pm)

The 2:30 visit left me agitated and worried. Gary was completely wiped out from the “bronching.” The doctor told me they had suctioned a lot of gunk out (“gunk” evidently being official medical jargon), and that hopefully that would speed the weaning process (before Gary dozed off, he did tell me he was breathing easier). But the doctor also told me there was pus in one lung and that Gary was in the early stage of pneumonia. Hospital + pneumonia = frightened Peg. The doctor said that it wasn’t uncommon for pneumonia to be induced by the ventilator, and that that was one reason they were trying to wean him off of it as soon as possible and get him out of ICU, a place that in itself increases one’s chances of infection. But the doctor said it is now something of a Catch-22, because the pneumonia makes it harder to get weaned from the ventilator. *Sigh* They have put Gary on an antibiotic to hopefully wipe out the pneumonia quickly – the cleaning out of his lungs should help with that too.

Another unwelcome bit of news is that the bottom staple in his back is draining, meaning there is some infection there. The neurosurgeon who assisted at Gary’s second spinal operation told me the antibiotic would also help with that, but they would keep an eye on it to see if they need to remove that staple; they feel the infection is superficial. The nurses’ orders are to keep him turned to keep pressure off that area, and to keep a dry gauze bandage on it.

I talked to the neurosurgeon again about the hearing situation, but he didn’t tell me anything new. He did say he would pass on to the audiologists that the hearing loss had surfaced after that second surgery.

Well, at least Gary’s new glasses came, so he’ll be able to see better.

Blog at http://drpeg2003.blogspot.com/

April 27, 2006 (9:25am)

Today’s stream:

A few corrections/ clarifications. It was my older sister who told me where the grocery store was – I didn’t find it myself. Not that she’s really going to care that I didn’t give her proper credit, but just to set the record straight. :-) Also, Gary is not really at the point where I can get him a latte. That was a joke, with reference to the earlier remarks about caffeine withdrawal. BUT my understanding is that he will eventually be able to eat normally. Now he is being fed through a peg-tube going into his stomach, and through IVs in his arm. Last night, when I was trying to wade through all the tubing coming from him in order to get close to him in the bed, he joked, “Don’t step on my dinner.”

We are still concerned about his hearing. He had a hearing test yesterday and it showed a moderate-to-severe hearing loss. :-( They plan to do more testing. Again, they don’t think it is nerve damage, but they haven’t found a definitive cause – they keep saying something about the accident, and I keep saying it never showed up until after the second surgery. I would just rather he didn’t have to cope with this on top of everything else.

A speech therapist came by with the wonderful idea that Gary could point out the letters of the alphabet on a sheet of paper in order to communicate. Way ahead of you, lady. (I’m not complaining – I know they have a lot of patients to see to.)

On my way back from one of my visits, I arrived at an elevator just when it had opened and a white-coated doctor stepped into it. “Are you going up or down?” I asked. “Uh, I don’t know,” he replied. “Stay the hell away from my husband,” I thought.

I managed to set off the fire alarm in my room yesterday afternoon. I have been cooking in the bathroom, and I forgot to keep the door closed that time. The steam from my rice cooker set off the alarm. I rushed over to the phone to call the front desk to assure them there was no fire. When they answered, they said, “Ms. Daniels, are you all right? We were just trying to reach you.” “I’m fine,” I replied. “I set the alarm off.” “Were you in the shower?” he enquired. “Uh, yeah,” I lied (that’s the ticket). “We’ll reset the alarm. Keep the door closed when you shower,” he instructed. “I sure will.” I was afraid to tell them it was due to cooking, as I have carefully avoided reading any fine print on the card hanging on the back of my door that might say that no hot plates, etc., are allowed.

I have discovered I actually DO NOT know how to plug a cord into a printer without guidance, and the less said about that the better.

(1:25pm)

It’s early afternoon now, and at the morning visit I found out that Gary has a wound infection from one of the staples in his back. They claim this is not unusual, and will put him on antibiotics. They may also remove the staple, clean out the area, and let it heal without putting the staple back in. They have also found fluid in his lungs, which they feel may be the reason he is not progressing with being weaned off the ventilator as fast as they thought he would be. When I left, they were prepping him to put a camera into his lungs and check things out, then “bronch” (pronounced “bronk,” don’t know how they spell it) him, meaning they would suction some fluid out of his lungs. He also was feeling hot, even though the room was about 68 (and I was cold), but his temperature was only 99. I wish there weren’t all these extra things to be concerned about.

He decided not to finish the letter to his family, and I am glad. It was about cancelling his trip to Alaska with them. Yesterday, when it became clear that that was what he was writing, I told him that he could write it if he wanted, but that the trip was still more than two months away, and we had no idea how far along he might be in his rehab by then, maybe the trip was still a possibility. He didn’t think that was realistic and continued to write. But after I left, the physical therapist came, and he talked to her about it. She told him the trip was still more than two months away, who knew how far along he might be in his rehab by then, and that maybe the trip was still a possibility, so he decided he was writing the letter prematurely. Hmm. Of course, the therapist had the weight of medical authority behind her when she spoke those words. :-)

Somebody asked if I had accidently forgotten to include myself as going on the cruise. I did not. Although the level of severity of my CFS is less than it was a few years back, I haven’t really chanced taking trips. A year ago last Jan. I took the first one in about 10 years, a short one to visit my older sister in Nevada and to go to L.A. because the story I’ve been working on is set there and I needed to do some on-site research. I almost thought of chancing the Alaska trip, though I was nervous about it, but then the back problems haven’t cleared up, so I don’t think it would be wise to take such a trip.

More Mail! Thanks Ronnie, Michel, Krystyna and Piotr, Stan Schneller of COSAM, the
Barjenbruch family, Alexander and Lauren Shibakov (who sent a hospital survival kit), Mom G once again, and Jo – who made me laugh with the lifetime supply of earplugs she sent.

April 26, 2006 (11:54am)

Okay, now for the next stream-of-consciousness entry.

WE’VE GOT MAIL! Thanks, Debra, and Judy and Stan – your cards made it to the Marriott. And the other cards made it to the TBICU: Debra, the Nyikos’s, the Carolinas Topology Seminar, Justin Moore, the Szulgas, the Kuperbergs (thanks for the CD – Mary Jane said she is getting a player to us), Ralph and Norma Grotelueschen (relatives of Gary’s, as you might guess from the name ;-)), Mirko’s, Mary Ellen’s, the Smiths, Randy Holmes and Liza Weisbrod, and another one from Gary’s mom, which included a cute picture of Gary as a, in her words, “one-and-three-quarter- year-old” (actually, Mom G, since that was a Christmas picture, he would have been one and five-sixths, less a day ;-)). We spent this morning composing a letter to his sister, Norma. He was supposed to go on a cruise with them to Alaska in two months, but he feels there is no way that is going to happen. The letter isn’t finished yet – he is insisting on writing it out left-handed, even though I told him if he pointed the letters out, I would write the letter. He should learn to take me up on my transcription skills while they are still being offered ;-) Anyway, we’ll probably finish the letter this afternoon. Just as I was to leave he wanted the Sudoku book, so thanks again to his grad students for bringing that.

Gary is looking healthier, has more color in his face now. When I came in he was hooked up at the trachea to some kind of machine that made noises like a steam locomotive. It’s supposed to shake up his lungs to help break up the secretions (not being technically correct here, I’m sure). The weaning process is taking longer than he’d hoped. They put him on the trachea collar again last night, hoping to keep him on for 2 hours, but had to put him back on the ventilator after thirty minutes because he was having difficulty. I was told it could take up to two weeks to wean him, but I know Gary had been hoping for the minimum time of two-three days. We have learned to preface everything the nurses tell us with “maybe” – like that he was going to be moved out of ICU, or that he is getting a lighter cast on his hand, or that they’re going to adjust the bed so his legs can drop down into a more of a sitting position. One person will tell us one thing is going to happen, and the next thing we know they will say it isn’t. Personally I wish they wouldn’t do that. It seems like getting his hopes up and then dashing them. He wrote me that he understands that a lot of different people are coordinating this. Like with letting his legs drop – the orthopedic guys say it’s okay, and then the neurosurgery people say no.

I heard from Auburn Eye Care that his new glasses are ready and they will UPS them to me. What happened to the glasses he was wearing at the time of the accident, I have no idea. Neither of the emergency rooms (first Auburn, then Birmingham) have any record of them. When I went to clean out his car, I looked around for them as best I could, but they were no place I had access to. They could have flown off and gotten wedged between the front passenger seat and the divider, but that area is so crunched together I couldn’t put my hand in to find out. Another mystery is what happened to his keys. He claims they were in the pants he was wearing, but the emergency room only salvaged his wallet, belt, and watch – his clothing had to be cut from him, so wasn’t saved. I did manage to find an old pair of glasses of his when I was home that Monday, so he hasn’t been too bad off that way. I’d be miserable without my glasses, since I would have to put things about 4 inches from my nose to read them, and people would remain a blur.

They are opening a Starbucks on the first floor of his hospital wing on May 9th, so hopefully by then I can sneak in a latte for him – yes, I know this sentence just appears stuck in.

One of the people who is in a similar boat as me (his wife was in a car accident) jokingly calls me “our leader.” I have the time down so I always arrive a few minutes before they are to let us in (tho they are often late in doing so), and then I march up to the front of the door to the ICU and plant myself so I am the first one in. Then I barrel down the hall when they give the okay. Outta my way, folks. Gotta get there before the selfish people do, as my older sister says. But they fooled me this morning, and opened a few minutes early, and some other people beat me in. That blew my track record for being first off the block, but being small I squeezed by them and still managed to pull ahead at the finish.

This speed reference reminds me. The elevator at the hotel is the slowest one in existence. I and others make jokes about it, commenting that we should have brought something for entertainment to pass the time until we get to our floor. I have received condolences for being on the sixth floor. The experience of traveling in it was even more delightful when my mother was here. The elevator makes this loud obnoxious beeping sound ever time it passes the floor. My mom decided to imitate the sound ever time she heard it. Great. Like standing next to the Road Runner on sedatives.

A couple people wondered if I got bored here (which really made me wonder if I was boring them with my writing. JUST KIDDING, I know that’s not what you meant. I hope). I am not. I am a slow writer, so it takes me quite a while to compose these updates. I am behind in my emails to people. Plus there are always little things that crop up that have to be taken care of, related to house and home, or little errands to be run. I have finally found a massage therapist who will work on me in her home, 5 minutes away. (One of the reasons I am looking forward to my little sister visiting next week, I admit, is that she is a massage therapist, and I plan to take advantage of her skills – and so is Gary!) Mary Jane recommended a chiropractor, and I am debating whether or not to go to her. It would be about a 20 minute trip, and I’m a little bit wary of having to travel that far and thereby ruining any adjustment she makes. There are a couple of acupuncturists listed in the yellow pages and I need to check their websites. When things get more settled, I plan to return to working on the mystery story I have been writing. I can’t focus on it now, as it takes a good deal of concentration, and I am not up for it. Probably even before then, I will return to critiquing stories written by my fellow members in my writing critique group. That will keep me busy – Jamie has written a story that is about 1200 pages long, and is willing to have the installments sent up with my mail. It is a wonderful story, and I have so enjoyed critiquing it. It is in the fantasy genre, which never before held any interest for me, but I couldn’t put her story down. All four times I’ve been through it (wink to Jamie). AND AS OF TODAY I HAVE MY SEASON 3 REMINGTON STEELE DVDs! Yes, I know, you’re thrilled. I am looking forward to watching them to unwind. I am debating on whether to save some of the eps and subjecting Gary to them – oops, I mean, offering to let him watch them with me. It’s not like he can voice any complaints. And if he pounds on the bed, I can just put that down to involuntary muscle spasms. (Sorry, a little black humor.)

All for now.

April 25, 2006 (8:00pm)

Gary had another CT scan of his head this afternoon to see if they might have missed some fracture that could be causing some mechanical difficulty with his hearing, but they found nothing to indicate that. They did find a mass of fluid (the doctor illustrated by rubbing his hand along his neck under the ear) that they feel is the source of the problem, and are hoping that it will soon be absorbed. I hope that happens soon; mostly for his comfort, but also so I don’t have to raise my voice so much. I feel like I am straining it when I read Dylan to him. He asked me to bring the Jimmy Carter book this afternoon (“Our Endangered Values”), but I forgot. I have it packed to go for this evening. We listened to a book on tape for awhile, one borrowed from my critique group friend Jamie, but I confess I didn’t pay much attention to it. I was standing there thinking that what he really likes is biographies, and wondering if I should try to find a place to rent some, or to go on the web and make use of a service my sister Janet found where you can rent books on tape. I don’t know if the latter would be worth it. Hopefully soon he’ll be where he can use his laptop, and then we’ll make use of the Netflix subscription my brother Joe and sister-in-law Dolores have offered to get for us.

They may soon remove the huge cast he has on his right hand and replace it with something lighter. It seems amazing how they’ve got that whole hand so wrapped up when all he broke on it was one finger. Of course, it was a serious break.

Today I sallied forth to buy a printer for my laptop – this way I’ll be able to print off some of the emails you’ve been sending and show them to him. I was proud of myself for figuring out how to get it working (though I won’t admit to you how long that took me); the only problem is that there is something wrong with the power cord – it keeps falling out of the back of the printer. Granted, I am not the most mechanical of people (like not at all), but I am sure I am sticking that cord in right. So now I’ll have to go back for a replacement. I hate having to do that kind of thing – feels like a waste of time to have to correct someone else’s mistake. Maybe I’ll get lucky and there will be a place to rent books on tape nearby.

Found a grocery store about 8 blocks away from the hotel. Being used to Kroger I found this place anachronistic. The overhead signs were uninformative and I ended up going up and down every aisle for the few things I wanted. Fortunately it was a small store. At the checkout counter was a booklet, “Pregnancy for Dummies.” I’d rather the dummies not get pregnant. :-) Gary said they’re going to get pregnant anyway, so it’s good to have this book.

One thing that makes me smile, is that when Gary wants to ask the nurse something and I am there but have moved out of the way to let her do her thing, instead of tapping the words out on the paper to her, he insists on having me come over and read what he is saying. Personally, I don’t think I do it any better than the nurses do, but it touches me that he wants me to do it. (I hope he is not going to be too embarrassed when he reads some of the things I’ve been writing. Maybe I shouldn’t give him the address of the web page.)

I am happy to report that the neighbors from hell were only here that one day. Turns out there was some “big” motorcycling racing going on, and Michael Jordan was here. This is the kind of thing I would print out whoop-de-do for. Well, now I’m not surprised at the type of people who were inhabiting the hotel that day. (Oops, my prejudices are showing.) I also found out that there is some big car racing event coming up, so I wouldn’t be surprised if a similar thing happens.

Someone said the hospital should have some kind of housing for families of people in the hospital, and in fact, they do. I have been on the waiting list for it since I got here, but it’s anyone’s guess as to when something might open up for me. It would be like a small apartment with a kitchenette, and would cost about a tenth of what I am paying for my hotel room. It is a bit farther than where I am right now – I’d have to walk through another building of the medical center and then walk outside for a block. At night, they tell people not to walk outside, because this isn’t the best of areas – one calls for a shuttle. But who knows if something will open up. There are two women who have been here a few days longer than me. They literally live in the 8th floor waiting room of the NICU where Gary was at first. There are a few couches there that they have taken over. I wouldn’t survive that kind of setup.

All for now.

April 24, 2006 (3:59pm)

Gary seemed downright chipper at 2:30. The physical therapist had come for the first time, earlier; he said she was nice and they talked about family stuff, etc. His exercise was to look at his feet and legs while she exercised them. He said his legs felt like blobs, and that when he touches them, it’s like feeling someone else’s body. She got a baseline evaluation for him, and told him the hard part was to come. He seemed happy to have this concrete sign of progress in his recovery.

April 24, 2006 (11:58am)

Someone suggested we do a blog, so you can post your comments and Gary can read them when he gets the internet. I was told about blogspot.com and am trying that out. Will let you know if it seems successful (note – I think it works. Check out http://drpeg2003.blogspot.com/ ). I am well aware that some of you may want to send me emails responding to what I have been writing, as has been happening, but would not want your comments available for public consumption. If that is the case, please don’t let the fact that I am putting this on a blog stop you from sending me the private emails – I won’t post them. I read them, but be aware you may not always get a timely response (ironic grin).

This next paragraph you may want to skip because I am going to vent. I had a rotten night. My leg hurt and I was upset from my visit with Gary, although writing about it actually made me feel better. Then my typical bad karma with hotel neighbors returned with a vengeance – what is it about people who go to hotels and act like they’re the only ones there? First I had the people to one side and across from me going in and out, talking in the hallway, and worst of all, visitors banging LOUDLY and frequently on their doors until after midnite. Perhaps that went on even later, but my exhaustion took over about then. My critique group friend Eve has told me, in a different context, that the penance for murder in the Catholic church is only 10 Hail Marys. I got to the point where I was willing to say a novena. Then at 4 am somebody decides to check into the room next to me on the other side . And can they do it quietly? Of course not. They had to talk to each other in the hall and bang their door for thirty minutes. I was ripped out of a sound sleep, shaking, and my heart going a mile a minute. Just when I had started to calm, someone started knocking on their door. I lost it. I went out there in my jammies and asked if the person was the same one who had been knocking on the door before, intending to request that they find a different mode of communication. The woman looked at me, said she just got there, for me to go back to sleep, and that sometimes we don’t get what we want. At which point I burst into tears and said, “I am well aware of that. My husband is lying paralyzed in the hospital.” Obviously not the response she expected. She walked away, then came back and said, “I’m sorry, I’ll pray for you.” I felt like telling her that was all well and good, but I’d appreciate it more if they would just be more considerate and not make so much noise. Oh, well. At least I think I guilted them into being more quiet. Unfortunately, I didn’t get back to sleep. So I meditated. I have been putting a lot of extra mileage on my mantra this week. I had intended to get up at 9, on the theory that it would be better to get up and going and hope I would be tired enough tonight to get a good night’s sleep, but at 8:30 I finally fell asleep until about 9:45. I pulled myself out of bed at 10 and got ready for the 10:30 visit.

I felt anxious going over there, worried how Gary would be feeling this morning, but the difference was like the difference between, well, night and day. Things seemed back to “normal.” He had two questions for me to ask a doctor – when he would get off the breathing tube, and about the deep breathing exercises. Good timing. A respiratory doctor came in and I asked the questions, and the doctor told Gary weaning him off the trache tube was a trial and error thing. That they just had to see how he was responding to the weaning process and go by that. This was not any new news, but I think Gary likes to have the reassurance of a doctor. I asked the doctor how much Gary should practice deep breathing. At first he said like the nurse had, “when he thinks of it.” I don’t know about y’all, but I’m standing there thinking, wouldn’t that be all the time? I mean, it’s not that he has a lot of other stuff on his mind right now. Fortunately the doctor then gave a specific, that a good routine would be 1-2 min. every hour. Now that’s something I can wrap my mind around. Tell me how often to do something and I’ll do it. Give me a vague “whenever you think of it” and I’m bewildered by how much I should be doing it. Anyway, just having the doctor say this to him helped ease Gary’s mind, I think.

Another good piece of news, when he yawned this morning his ears popped and he got part of his hearing back, so it’s a relief to know that is just is a matter of his ears being stuffed up from drainage.

A bunch more cards came – from his brother Donne and family – Phyllis, Carissa and Justin; Jack and Janet Rogers; Judy Roitman and her husband Stan whose last name I regret to tell you I can’t remember and I can’t make out the writing; the KU group; Sheldon and Brenda (? again, forgive my memory and the fact that I can’t make out the name for sure) Davis; and Gary’s sister Norma, who wrote that Gary could give anyone there a hard time except me – Gary pointed that out to me and nodded emphatically.

I think that’s all for now . . . Oh. Someone (since this is going up on the web, I’m not naming names for the most part, except to let those people who sent cards know that they arrived) wondered whether my leg problem might be “ restless leg syndrome.” I haven’t heard it called that, and from what I’ve read on it in the past, I don’t think that’s it. I HAVE had what I thought was that in the past, the need to move the leg to get some kind of relief. But I haven’t read that a symptom of that is the “shaking” sensation. This shaking is something that can actually be felt – when the massage therapist works on me, she can feel the internal shaking. And sometimes the shaking can be felt in the small of my back. Someone else thought an acupuncturist might help. I did actually go to one – she is a Chinese medical doctor who does acupuncture in Auburn – but I got scared after the first treatment. Not the acupuncture part, tho I was uncomfortable lying on the table that long, but when she finished up, it was with some kind of massage. I don’t know what the official term for it was, but for us Americans she termed if “Kung fu massage.” (Her English is pretty bad – I understood about one word in ten – like maybe the pronouns.) Anyway, the name fit. She was slapping me all along the back of my body with her palms, and I mean hard. I was really afraid she was going to hurt me, make my symptoms worse. But I couldn’t get off the table. I told her to stop, that I was afraid this was too much. She said, “No, no, good for you, wake up chi.” I said, “No, no, not good for me, beat the chi out of me.” She didn’t understand. Or chose not to. But I had been thinking of giving it a try again, so when I get the chance I’ll see if I can locate a traditional Chinese acupuncturist around here. Let’s see. I’ve gone thru an M.D., two physical therapists, three massage therapists, and a chiropractor so far. Everyone helps a little but no big breakthroughs. Actually, I think the latest thing the chiropractor was doing – stretching me on the rack (all right, decompression table), was definitely helping. Another thing to look into, to find someone up here who does that.

Okay, time for next visit.
All for now,
Peg

April 23, 2006 (9:23pm)

Tonight was upsetting to me. Gary had to be put back on the ventilator, which gives him the little extra push to breathe, because his oxygen saturation was down. He was concerned he had had a setback, though the nurse tried to assure him he has been doing better than most people do when going through the weaning process. I think he thought the problem might have been due to them doing a marathon suctioning session on him – they used something called a bag on him, which evidently does deep suctioning. The whole ordeal, as he termed it, took thirty to forty minutes. He called it the suction from hell. His hearing got worse again, even though when I saw him earlier this afternoon he had said it had gotten a little better. Also this evening he wrote out big notes for the nurses while I was there to hold the paper for him: “Turn me: yes no” “Pillow: yes no” “Sit me up so I can watch the TV: yes no” So obviously he doesn’t feel he is being able to communicate to the nurses. The nurse tonight told me he needs to practice taking deep breaths and to cough deeply when they suction him. I told that to him, and he indicated that that was news to him, so obviously there is a failure of communication. The nurse also said for him to be sure to rest, and when I relayed that to him, he spelled out, “speaking of rest . . .” and gave me a significant look. I took the hint.

Maybe I read too much into the things that happened tonight, but I felt upset because I felt that he was frustrated. Yet when I asked if he was, he answered, “a little.” Maybe that’s true, he’s an even sort of guy. I hope so. All I know is that it put my stomach in knots and brought on another session of the weeps.

April 23, 2006 (7:08pm)

Gary seemed perkier at the 2:30 visit. I guess a sign he’s getting better is he made out a to do list for me: buy electric shaver (I forgot to bring his from Auburn, not used to thinking about such “men things”) and buy a big clock so he doesn’t have to bug the nurses about what time it is (they keep the clock on the wall to the side but behind him, and he can’t twist and see it). So I had my big adventure: finding and surviving Wal-Mart. Did I tell you how much I hate driving? The hotel desk clerk gave me good directions, which weren’t at all difficult, but I always managed to be in the wrong lane for turning. Fortunately there were polite people who let me cut over to the correct lane – even with my “No George W” and “Freedom of Choice” bumper stickers (Gary actually designed the latter on some site on the internet and bought them). Once I got in Wal-Mart I faced the second challenge: find the stuff. Did I tell you how much I hate big stores? Once I located the stuff, time for the adventure of getting back. I realized I had forgotten to make sure exactly how to do that – which exit to take off the freeway – but fortunately it turned out to be obvious. Except once again I was in the wrong lane.

The worst part is even that little driving set of my sciatica-like symptoms (the chiropractor said I have more than just sciatica, but I don’t know any technical name for it; some of the disks are bulging). This is a drag. I tried walking it out and stretching it out, but things are definitely worse. I hope the pain doesn’t interfere with sleep too much. (For months now I’ve also had the sensation like someone is holding onto the bottom of my foot and shaking my leg very fast, or that a current is going through it – that sensation isn’t painful, but you try sleeping with someone shaking your leg all night.) So I hope I don’t have to run such errands very often.

I gave Gary his presents at the 5:30 visit, and then we read more Dylan.

He didn’t get out of the ICU because they didn’t have a bed available in the other section for him to move to.

April 23, 2006 (12:01pm)

Well, breathing turns out to be hard work. They have been weaning him off the trache tube, making him do the work of breathing (but with a trache collar through which he gets medicines for his lungs). According to his blood gases he is tolerating it well, but it is definitely fatiguing him. He had said it was okay for a few of his grad students (Brad, Asli – and Robert F. joined in the group) to visit, and the morning visit on Sat. went fine – that was the first time he was on the trache collar – but when they came back for the afternoon visit he was definitely showing signs of wear. They didn’t cause that, let me assure them (heck, if anyone would’ve tired him out, it would’ve been my brother-in-law the previous days (JUST joking, John)).

Gary enjoyed the visit. They brought up a get-well card from the math dept. (which reminds me, I forgot to read it) and a Sudoku (sp?) book. He did the first one after we left that morning. When we came back he said it had been an easy one. Brad told him the challenge was to do it left-handed.

I called Gary’s mom after that visit, filled her in. She told me a story from when he was a kid, when they lived on his grandpa’s farm. She was listening to a local radio station, a call-in program, I guess, and someone started saying something about what a bad mother some boys had because she was letting them play up in some tall trees. The caller described the location, and Gary’s mother said, “That’s OUR area!” She went out and found Gary and some other boys (probably including his trouble-making older brother, Donne) up in some trees – Gary the farthest up. She calmly informed him he needed to come down right now, which he did. She then forbade any of the boys from climbing those trees again. Not sure if she was obeyed. She blames the boys from the town for their bad influence. Personally I would still blame Donne, even if he was nowhere around. He, after all, was the one to get Gary to blow on the rocket fuel in a spoon because they couldn’t get it to ignite. It then did. And Gary practically blew his face off. I’m also betting it was Donne who got Gary to ski off the roof of the barn. He broke his foot that time. Hmm. I suppose I can get sued for libel by Donne now.

After hanging up with his mom, she called me back almost immediately, cautioning me not to let Gary get too tired out with visitors. When I saw Gary at 5:30, he was still tired. The nurse said he was doing well adjusting to the breathing. They roll him on to one side or the other to prevent pressure ulcers, and he is on blood thinners and wearing compression bandages to prevent blood clots from forming. The three students just stopped in that time to give Gary a present – I understand Regina chipped in as well – the first 2 seasons of our favorite TV show, “24.” That should keep us occupied. I informed Gary that Season 3 of Remington Steele had just been released on DVD and I was having it forwarded from our house so we could watch it. He spelled out something, but I’m sure I must have mis-read it. It looked like “Whoop de do.” I can’t imagine why he would say that – he enjoyed watching the full five seasons with me just a year or so ago. I would think it would be even better now that we have it on DVD instead of on tapes of tapes I’ve gotten from various people. I mean, now we can actually see the faces of the actors.

He was too tired for any talk, so I asked him if he wanted me to read to him. He said yes, and between the choices of the paper, Newsweek, and a book, he chose the book, Bob Dylan’s new autobiography. Gary must like it pretty well because the bookmark was more than half-way when I started reading it to him last week. It’s not really my cup of tea tho. Dylan was slightly before my time, so I’m not intrinsically interested in him, and the book strikes me as rather stream of consciousness. The imagery is vivid – I keep wondering, can he really remember what he was wearing on that occasion back in the 60s? what those places and people look like? (Heck, I didn’t even remember we had wallpaper in our kitchen before it was repainted a few weeks ago when that topic came up (the person putting in our new kitchen floor, who had seen our place one time, a month earlier, commented to Gary (I wasn’t there) how nice the repainting job was, that she liked it so much better than the wallpaper. Gary had been impressed she remembered that detail and told me about it, and I said to Gary, “We had wall paper?” Of course, I am the person who when asked if our house was wood or brick had to tell the person I would have to go home and check. I am definitely not a sensate person.) The book reads somewhat like poetry. I’m thinking “beat poetry,” though I don’t know if that is an accurate assessment because I’ve never read any. Perhaps Gary finds the book soothing. I find it confusing.

When I came back at 8:30, Gary was so tired out he didn’t even want me to read to him. In his usual polite way he spelled out, “If you don’t mind, I would just like to sleep.” I think if I were in his position I would be spelling out, “Go away.” Or if I felt wordy, “Go the hell away.” Anyway, I told him no visitors until he’s more perky, and then left. Mom knew best.

I had seen Gary’s neurosurgeon in the morning – the one who kept me waiting around until 1 am Thursday morning for an update on Gary’s surgery and then never showed up. There wasn’t anything new to report, really. Everything is looking good, no complications. They took out the stitches in his back and put in staples (youch!). They’ve taken out the drain he had in his back that he had had in for the surgery. They given him some blood cuz his red blood cells were low, and given him some extra minerals and electrolytes that were a little low.

Okay, that was Saturday. Today, Sunday, I have so far seen him just on the first visit. He is still tired, from the breathing adaptation, which they say is still going well, and it may be that things are catching up to him. For one thing, ICU isn’t very restful, it’s like day all the time. They like to get people out of there ASAP because patients can get “ICU psychosis” because of the lack of REM sleep they get from the constant interruptive activity that goes on – they get tired, cranky, and can even start hallucinating. So far he is just tired. Since I don’t even need one hand to count the number of times I’ve known him to be cranky in 25+ years, that would be noticeable. The nurse told me he is doing so well that they may even move him out of there today. He would go just down the hall. I believe it’s called Trauma and Burn Nursing Unit, but I’ll check on that when he moves. Yep, another change of address.

All for now.

4/22

Since this ordeal first began on the 14th, I have been writing individual emails to various people about Gary. Thinking I would cleverly combine all of you into one

big list, I have been writing about Gary's condition and sending that off in one shot starting about the 20th.

Unfortunately I then heard today that some of you aren't getting

the mail because of span filters (if you check your trash, maybe you can recover some of the emails – in fact, maybe some of the emails I wrote to individuals are in their trash, because I never got replies to some of them when I would have expected to – I have replied to every single email I have received, so if you didn’t hear back from me, it must have been marked as spam). Janet Rogers suggested my mail was being marked as spam

because I was sending my email thru my charter

acct. So I made a new yahoo acct and so am testing it

out now. If there are still problems, I will get on

Gary's university acct and try that. I was going to

try to avoid that so I didn't "take over" his account.

Unfortunately because I stuck in everyone's address

that I know, it may be getting rejected because of the

number of people in the address list.

Of course, how will I know if some of you don't get

this ?

What follows below is some mail you might have missed. If you've already seen it,

sorry, please ignore. You may get yet another copy if

I have to move to Gary's account.

Peg

( Note – later this evening I decided to try to put all this stuff up on a webpage. Excuse the inelegance, I know nothing of blogging etc. I have, hopefully, rearranged this in reverse chronological order.)

4/22

sometime between 3:30 and 5 pm, I forget exactly when.

Well, now the surgeon who did Gary's second spinal

operation tells me the hearing loss is NOT due to the

drugs ( he wasn't given the ones that could cause

that) but either due to drainage from the feeding tube

that was in his nose or possibly to blood in his inner

ear from trauma during the accident. Sigh -- bottom

line is, they don't know for sure, but they don't

think it is anything to be worried about.

He is "on schedule," progressing nicely. Today they

start weaning him off the trache tube. They are

optimistic that this will go quickly, meaning 2-3

days, until he is just wearing the trache collar for

24 hours, meaning the machine won't be giving him a

little extra help and he will be breathing normal air

(now he's getting a higher concentration of oxygen).

Hmm, what else. Oh. He would like a vanilla caffe

latte (he's going thru caffeine withdrawal). I'm not

sure the experience would be the same going thru one

of his tubes, but as long as he gets the caffeine kick

. . .

He complained that you would think that with all the

technologically advanced equipment surrounding him,

they would have a decent TV system. The remote works

randomly --it's anybody's guess when hitting the "on"

button will actually turn the damn thing on -- I think

this is cruel, making the patients wonder about their

sanity (half-joking). they also have a lousy selection

of channels. The attending (male) nurse told Gary he

needed to get into the soaps. Gary said the nurse

probably watched them all, to which the nurse

agreed,saying he watched them right in the ICU. I told

Gary the guy watches them instead of the patients. The

nurse said if Gary kept up his complaints about the

TV, he would be sedated. Gary called the nurse cruel,

to which the nurse responded, "If you want to see

cruel, I'll call Bobby Lowder and have him come visit

you." Gary said he didn't think he better write out

his response to that. (To the non-Auburnites, Lowder

is all the faculty's favorite AU trustee. Not.)

Many of you have asked how I am. What can I say? I was

petrified he was going to die on me. I am deeply

grateful that he's had no brain injury and am very

glad he's still got the use of his arms. A good friend

(hi, Connie)brought me back to Auburn last Monday for

the day where we did what had to be done -- getting

tax stuff in, getting the accident report, seeing

State Farm, packing up some stuff I needed, or wanted

for Gary's entertainment -- and one thing I did was go

to his car to retrieve what could be retrieved.

Definitely not an experience I would like to repeat,

seeing the car. Thank God he wasn't hit on the

driver's side (the impact was on the front passenger

side).

i am ensconced in a hotel where I can literally be at

Gary's side in less than 5 minutes. Hotel living isn't

my thing, but if it has to be, this place is good for

it. Convenient to the hospital so I don't have to

drive. Reasonably quiet for a hotel -- I'm betting

the majority of people here are here because they have

someone in the hospital. I use my hot plate and my

rice cooker for my meals -- I'm allergic to most all

foods, so am able to meet my needs this way. Actually

it was a few days before I could choke anything down.

Sleep is lousy, but I'm sure that will get better. My

major worry in that regard is to try to get enough

rest so I don't have a CFS crash. If this had happened

even a few years ago, when I was much worse off, I

don't know if I could have even made the trip here. So

in that regard, after my visits with Gary, I go back

to the hotel room to unwind. Some people literally

live in the waiting room of the hospital, but I

wouldn't be able handle that. Even waiting there in

between visits would be too much, in terms of comfort

for my back and getting some rest.

I am grateful for all the help I've been given and

offered. When I received the news to call the

emergency room, I had just arrived at Paneera's for my

writing critique group. One of the group members, an

Auburn junior -- Eve -- drove me to my house where I

threw the necessities in my car (unfortunately with my

food allergies I am high maintainence)-- or rather I

should say i threw them in boxes and Eve carried them

to the car, because I have been having back problems

(in fact, when I talked to the emergency room doctor,

he told me Gary had told him I couldn't come to B'ham

because of my back, and later when he found out I was

on my way up, he told me he wanted them to call me and

tell me not to chance it, but that they couldn't

because I didn't have a cell phone -- I told him that

if he thought that would have stopped me, to let me

assure him as long as I had breath in my body I

would've been there. As you can see from this he has

been quite lucid throughout the ordeal; the only thing

he can't remember is the gap in time from heading home

from the golf course to waking up in the emergency

room, tho he evidently even aswered questions of the

police at the accident scene). Eve also carried all my

boxes up to the hotel room for me. Connie hauled me

around last Monday on the various errands, and then

she and Jamie, another critique writing group member

(and on the English Dept faculty) formed a caravan to

take me back to B'ham so I would have a car up here

(so I can buy my zuchinni :-))but wouldn't have to

drive it up myself.

Various neighbors --Sue Rodger, Sylvia Goldman, Hilary

Wyss and her husband James whose last name escapes me

now -- have offered to see to the house and cats (who

were pretty mad that I hadn't made the trip back home

on Monday in order to spend the day petting them).

All of you have helped me by sending your emails of

sympathy and support, and replying to various

questions I had re insurance stuff, etc, taping "24"

so we won't miss an episode (Gary was concerned about

that , thanks Jim). I've probably forgotten people

I should single out for thanks, so if I have, I'm

sorry. I'm grateful for all the help I've received and

all the offers of help.

What do I need? My massage therapist Connie and my

chiropracter. I assume those aren't possibilities (at

least, affordable ones), so I will have to look for

ones up here. I imagine we'll be up here for at least

another month.

Well, this is probably MUCH more than you ever wanted

to know but I figure you can always hit "delete."

;-)

All for now.

Peg

4/21

10:23pm

Gary is sitting much more upright now -- about a 60

degree angle (see the advantage of a mathematical

background?). They will start weaning him off the

trache tube by alternating it with a trache collar

(which they said looks like an oxygen mask, but fits

over the hole they made in the trachea) starting

tomorrow. He has had a bit of a fever since last night

-- 100.2 -- but they said that was normal for after

all these surgeries. He got a little pooped out after

the last visit with my mom and Janet &John , but

should be all right. He is looking better and better

each day. Our spirits are good -- it really helped me

to have some family around for this short while --

they left tonight. I think we all got a little

slap-happy Thursday night. I hope the other people in

the trauma unit didn't object too much to the laughter

coming out of our room -- I can't even remember what

we were all laughing about.





Peg

4/21

10:18am

The surgery on his finger yesterday went fine -- they

put in a metal plate

and six pins. He jokes that he now has a bionic finger

and asks whether that

scared us or excited us (me and my sister Janet and

brother-in-law John and

my mom). I told him it depends what he does with it.

It will be in a metal

splint for 6-8 weeks, and he won't be able to use it

until then. They had

x-rays of it for him to see.

One thing that I don't like is he now is having

trouble hearing, like his

ears are plugged up as they get during flying. I've

been pestering the

nurses about it to get on the doctors about it. The

neurological docs say

there is no neurological reason for it. Wouldn't you

know it -- I finally

pestered the staff enough so they tell Gary what they

are doing when they

come in the room with him and do stuff to him, and now

he can't hear them.

They had to suction him a lot with all those tubes in

-- I'm hoping it's

just something like irritated sinuses, or maybe all

the anesthesia. I will

see him in about 20 minutes so I will see if the

doctors are doing anything

about that yet.


All for now.

Peg



I forgot. When I first wrote some of you about Gary's

address, he was in NICU (N=neurosurgery), but then he

was moved to TBICU, Trauma and Burns ICU, where he

still is now, just a floor up from where he was before

. I got on his university email account and see

someone has said his address is MICU --I'm not sure

where they got that info; perhaps that is a correct

address as well. I will try to remember to doublecheck

that when I go over for next visiting time. Anyway,

the Browns' card made it, and I believe that was sent

to NICU, so if you already sent one off, it will

presumably eventually make it to him.



The hearing loss, the doctors say, is due to the all

the anesthesia he has been getting for his different

surgeries, so will return. We have a new method of

communication -- we've written the letters of the

alphabet on a piece of paper and he points to the

letters with a pen. I know, I know, I should have thot

of that earlier.



All for now,

Peg

Staff assured me that anything that was sent to him at

the NICU will be sent up to the Trauma and Burns ICU

(TBICU) where he is now. His new address (put his

name at the top):







TBICU/North Pavillion 9th Floor

Room 9508

1802 6th Avenue South

Birmingham, Al 35249

4/20

2:19pm

Okay, I'm going to try to summarize here. Gary was in

a car accident on Friday and suffered a severe injury

to the spine, broken ribs, bruised lungs, broken

pelvis, and broken rt. index finger. He was flown by

helicopter to UAB Hospital in BIRMIngham, where he was

first in Emergency, then the Neurosurgery ICU. The

first surgery he had, Friday, was a spinal

decompression, during which they took care of a

hematoma next to the spinal cord (I may not have

everything technically correct, but this should be

close). Unfortunately they discovered the injury to

the spine was worse than they initially hoped -- in

one doctor's words, the spinal cord was completely

destroyed at the T4 level, about nipple height. Below

that level, he has permanently (they say, but never

say never) lost all feeling, in particular he has lost

the use of his legs. However, he's still got his

"Gary-ness" -- no damage to brain/mind. He also has

the use of his arms. They put him on a breathing tube

(mouth) and feeding tube (nose). Both of which he

detested and mimed a strong desire to yank them out.

He is flat on his back and cannot speak or use his

right hand, so we communicate by him writing

left-handed on a piece of paper I hold up in the air

for him. In case you want to know, he can write pretty

damn good with his left hand -- I've been able to make

out everything. He was concerned about his classes,

and also wanted to make sure everyone knew he was fine

from waist up (actually, not that far, only nipple

level up, but he hasn't quite taken everything in). He

has definitely maintained his desire to do as much as

he can by himself -- if I try to guess what he is

writing, even if I guess correctly to save him the

effort of writing, he still insists on writing it out.

Even if I guess a synonymn of what he is trying to

write, he'll continue to write his own word, thank you

very much.



He had a second spinal surgery yesterday to stabilize

the spine -- the ligaments holding the vertebrae

together had been stretched and torn. So screws were

put into the spine to give it strength. He also had

bone grafting done at the same time, so that the bones

will fuse and take over from the screws and other

metal supports when those inevitably fail. (Again, I'm

not sure I have all this quite correctly stated, but

it should be close). In a second procedure done right

after the spine surgery, they took out the mouth and

nose tubes (yea! says Gary) and put in a trache (sp?)

tube for breathing and a peg-tube for feeding (there's

a metaphor in there somewhere). This afternoon he

should be having his last surgery, where they put pins

in his right index finger so hopefully he'll have the

full use of his right hand again.



His lungs are weakened from nerve damage and

contusions, so it will be at least a few days, up to 2

weeks, until they can wean him off the breathing

apparatus. Eventually, the hole in the trachea will

heal so he can talk again. Once he's off the

ventilator, they'll begin easy therapy, then hopefully

more intensive therapy in about 2 weeks.



All for now, as I'm about to dash over for the next

visiting half-hour.





I've conveyed all your words of concern and wishes for

a speedy recovery to him.



Peg

This is just a test to see if I'm understanding how this works.