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I rose at 7:00 to the alarm and the cat simultaneously, one buzzing louder and louder, the other starting her attack on the table by my bed, impatiently tossing articles off it one by one, hoping a crash of something loud enough would bring me to my senses and though angry -- my curses being a price worth paying -- get me to get up and feed her. Needless to say, after a quick pit stop at the bathroom, I went to the kitchen and dished out her quarter cup of morning kibble and one tablespoon of half and half (our secret treat) toute suite. I noticed then that my music was playing -- no particular song, just a chorus of women, like 20 Sweet Adelines, singing a series of notes up and down and around and back in a choir, with harmony that I could not reproduce except mentally. As soon as I tried to sing out loud I lost it. But mentally I could sing right along!
Just then, no later than 7:15, a blast from the buzzer both irritated and startled me as it never failed to. Who on earth could be ringing so early? Surely it wasn't Eliza the visiting nurse...she usually came at 9:30! "Hello?" I said warily into the phone-like intercom. "Hi, Pam." So it was Eliza. I wondered what she was doing here so early in the morning. Pressed the button to unlock the outer door twelve stories below then set about making coffee while I waited for her to take the elevator upstairs.
Actually, it turned out that it was quite convenient that she spontaneously chose to come this early that day, as Joe and I had to leave at 8:30 to go to Newton Hospital for his appointment at the Sleep Center for a consultation regarding his breathing machine and his sleep/fatigue, and I'd have had to call Eliza to ask her to come early anyhow. So here she was and no phone call was necessary after all!
Eliza scratched on the door and came in. She did her usual routine, asked me how the weekend went, how I ate on Sat and Sun, then she poured my pills and watched me take the 10-15 that I take every morning, had me sign her computer and with the usual reminder that I should call her if anything came up, she was soon out the door and on her way.
To music as always, I ate part of a tofu bar and a cup of coffee with cream, checking my e-mail. I changed my clothes in order to be presentable, though ordinarily I'd simply stay in the clothes I slept in. No shower, no way! When Joe called, I told him to come on up, I was all ready, though we still had 15 minutes before we had to leave. Suddenly I was afraid my hair was dirty and that my balding spot would show, so I quickly stuck my head under the bathtub faucet (fully clothed) which I can do without trouble, though it takes some manuevering, because of the long leg muscles I was born with, and shampooed and rinsed in under two minutes. I was done by the time Joe came in. There's a lot to be said for very short hair; I'd gotten mine shorn only two weeks before.
The drive to Newton Hospital was uneventful. I was too sleepy to drive and the music continued, but it was ignorable and Joe was able to talk while he drove so we discussed some of his symptoms, since that's what he seemed to want to talk about. He brought them up, I didn't. He usually does when he's with me, and seems to want to talk about his illness, which Kay tells me he only jokes about with her and others...But then he tells me later that I'm always harping on his illness!!! Well, I don't bring it up ever! He is the one to always always talk about it, as if he hungers to have someone to confide in and talk about it with...So why does he then attack me about it? He also tells me things like he sleeps only 2 hours using the biPap machine, but then tells the docs that he uses it 5-6 hours a night! To whom is he fibbing??? and Why?
Anyhow, during the drive he brought up the fact that he felt he was getting weaker in general, nothing specific just that he felt weaker all over, though when I asked him if there was anything he couldn't do now that he used to be able to do, he couldn't name anything, thank god. Except for walking upstairs, which the CLinic told him not to do, he still does what he always did, but it takes more effort. He does however have trouble eating and chewing, which makes eating a laborious process that can make it take an hour to finish a meal. And speaking is obviously labored; it is clearly difficult to produce articulate speech as well as to produce sounds at all. That is, it is tiring to talk, to project sound, as well as to form clear and articulated words, insofar as he can at all. Right now he has a lot of trouble with L, V and K sounds, so far as I can tell, and probably others as well, though T is quite clear. I don't think we without ALS appreciate quite how tiring it is to talk, maybe after a day of lecturing we might have an inkling, but only that.
At the hospital I began to have trouble, due I suspect to what Dr O would call paranoia. I was carrying several official looking manila envelopes and a green filing envelope plus a book and my purse, and I wore brown pants, good brown suede clogs and a fitted brown tweed hip length suit jacket. In short I looked quite professional...which was a problem for me. Once inside, we proceeded towards Neurology which houses the Sleep Disorders Center. My clogs clicked officiously on the linoleum and even worse on the temporary flooring when they had contruction going on. I felt like I was preceding myself with an announcement or warning; I was too conspicuous, both in my clothes and because my shoes made too damned much noise!
Finally, we made it to the Sleep Center, where there was carpeting! Since I have been there often (Dr O works there and I have had my appointments there several times) and knew the way, I led and brought Joe where he was supposed to go, told the receptionist who he was. Luckily then Joe took over, after he had put down his crate holding the bipap machine, and I could fade into the woodwork again -- except that everyone thought I was his wife, and so addressed everything to me as well...and I couldn't disabuse them of the notion because they never came right out and said anything to that effect! I just know they assumed it.
(This is making me so anxious to recount that I have to have a cigarette. Don't worry, i will not relapse. I could just as easily NOT have a cigarette too. I just happen to feel like I could have one...and I know it won't blow my having quit, because I have done it before... Well, okay, maybe I won't have one. Phew, that's how long the occasional craving lasts!)
But we were 45 minutes early and there was paperwork so we went to take the elevator to the 5th floor cafeteria for coffee and some more breakfast. In the elevator I noticed three people getting off on higher floors staring at us at me and wondered if they knew me or of me from someone or were trying to influence my mind to tell me where to go or if I was allowed in the caferteria. I wasn't, not alone. Luckily, I was with Joe and that by definition gave me permission not only to get a cup of coffee but to get something to eat as well, so long as it was done quickly and inconspicuously, no lingering indecisively or the people in the cafeteria would notice and know that I didn't belong there. As it was I was being tested: If I could choose what to eat and drink quickly, decisively and normally, I'd be permitted to purchase them and leave. Otherwise I would not be welcome. I could feel all eyes on me as I ostentatiously pumped cream into my coffee cup then filled it with vanilla flavored coffee, tonged a muffin onto my tray, trying not to take any time to decide what kind or which one, as if it made any big difference, and went to join Joe in the check-out line. I paid but had to wait for Joe, sticking out like a bruised thumb, then we left.
Out in the dining area, another problem: where to sit? Where would we be best protected? I wanted to sit in a corner where walls would afford some defense on two sides. But Joe marched right to a table in the center, put down his tray and pulled out a chair, without even asking me if this was okay. The Rules already dictated that I could not object so with a dejected heart I sat in a chair opposite and tried to make the best of it, surreptitiously surveying my surroundings immediately, to see what sort of danger I was in.
I could see at once there would be difficulties. Too many people around to watch me and for me to be afraid of; too many people for me to be vigilant of...Three men in white coats wearing scrubs eating finger foods from plastic bags and laughing and slouching around a table, looking around...and a couple of Spanish-English speakers right next to me, so close I could have reached out and touched one of them. I could hear every word they said, and likewise, if I said anything, they'd hear me and could tell what I was thinking. Worst of all was the fact that by necessity Joe had to do his paperwork, and to eat, both activities requiring all his attention and precluding any distracting talk that might have made me not only feel safer but, by virtue of not being alone anymore, actually be safer. While he was otherwise occupied, I was to all intents and purposes, effectively alone and as vulnerable as I would have been without Joe. I hadn't even brought my book in which I could have seemed to be absorbed to take some of the attention off me.
So while Joe ignored me, I sat very quietly in pain, trying not to look distressed or upset but setting my face hopefully to blankness and staring straight ahead...at the back wall of three identical pictures interspersed with repetitions of several smaller identical prints...Boring boring boring...that didn't matter, it simply gave my eyes something to focus attention on. Actually I was aware of everything else, aware of every word I heard, every movement of the men in scrubs at whom I glanced from time to time, wanting to get them to leave, but not daring to turn to look at the Spanish/American couple next to me for fear of provoking them. All this time, I was still fixed on the back of the room, staring through a younger black woman who was eating fruit salad at a table just past us. I was afraid if she turned around and saw me staring, she'd accuse me of, well, staring at her, when in fact I mostly didn't see her at all, but saw through her, my eyes fixed on something or nothing in the distance. She just happened to sit within the cone of my viewpoint and so it looked like I was seeing her, when she was not even in my focus. I didn't even think about her until my fear noticed her glancing at me and then I began to worry about what she may have been thinking and worrying about me!
(This is getting too long so I will continue the saga tomorrow or later) 8D for now)Posted by pamwagg at November 1, 2006 07:52 PM