September 02, 2006

If you lived in my skin

Bam, bam, bam!...Bam, Bam! "Pammy? Pammy, wake up. It's Ana!" At the first bam! I had startled awake and by the second I was out of bed, fully dressed (I sleep in my clothes -- real clothes not just sweats) and hunting blindly for my glasses. Aha! Found 'em. "I'm coming, Ana, I'm coming!" I grabbed a sweater, for the temperature had fallen overnight, and ran to unlock the door. I glanced at the clock and groaned; it was barely 7:30.

Ana is usually the evening visiting nurse, but on Saturdays she comes in both the morning and the afternoon. Short, competent, especially good at giving the IM injections that I get once a week and compassionate, but also not without an earthy sense of humor, Ana and I get along well. However, she makes certain I swallow the hated Haldol when she's in the kitchen and can see me take it. Same thing this morning.

Still stuporous from my 4:00am Xyrem, I signed her paper and locked the door after she left. Then I cat-napped Eemie, and raced back to my bed, hoping it was still warm.

When I woke at 9:55 the phone was ringing, but this time it was Joe and I was happy to get up. "You want to come up?" I asked him.

"Sure thing. Give me a few minutes."

When he knocked, I had to unlock the door rather than tell him to come on in the way I usually do, because I forgot I'd locked it after Ana left. For that, I got a morning hug. Now I am not at all an affectionate person, not physically. I don't know how to be, one, and two, I basically feel squeamish about touching and being touched by other people. I have learned how to accept a hug from certain people and even to hug back, mechanically but believably. But to Joe I've always said no. Ours has been a completely non-physical relationship because I needed it to be that way. If he wanted more than I gave him, he only joked about it to me, never pushed the issue and accepted what I had to offer.

Then he found another "good" female friend, after years of having me, and he wanted her to be his "girlfriend." At first, this took a load off me, because I felt that she could give him things I couldn't and I wouldn't have to feel guilty. But he found that she was sort of vapid. Despite having graduated from Harvard, she was interested only in style and fashion, and good dining...which also made her expensive, when Joe is the most frugal of men. He would go out with her then come back and come to visit me in order to have "a good conversation," which he clearly missed. Once I joked that she might be his girlfriend but I was first in his heart; he didn't contradict me.

That relationship soon broke up though, with neither party particularly devastated. Joe was the one to end it however, and he soon began to visit me again regularly. Then I was hospitalized; then he was diagnosed; then his old "girlfriend" who is very pushy, started to hone in on him despite having another boyfriend, secretly trying to, well, do something against me and I got upset and told Joe I was jealous. Afterwards, walking down the street, he put his arm around my shoulder, and it felt okay, it felt comforting even...So I didn't recoil or shrug it off the way I would have ordinarily...

So, a hug, then breakfast for me -- yogurt and half a frozen banana (Joe had already eaten). Joe's voice was poor this morning, more difficult to understand than usual, very strained and sludgy. "Music" started to play in the background, but sheer willpower turned it off, or else I was able ignore it. He kept yawning and saying how tired he was, fearful that --yawn -- he might not have enough energy to attend the November technology --yawn -- seminar in Cambridge, MA he was so looking forward to.

His fatigue worried me, as everything about Joe worries me these days. I know I shouldn't assume everything is a dire symptom, but it is hard not to, when there is no professional involved to explain anything or to take over his care.

So when he went to take a nap at 11 in the morning, I read in one of my ALS books about daytime sleepiness and how it can indicate respiratory difficulties, and went into a panic, thinking, Oh no, his tongue is affected and then, the rare occurence, his breathing muscles are going to weaken early rather than late in the disease! I was in terror for hours, waiting for him to wake up. That's when the voices started up for the first time today. Attacking me, calling me names, telling me I had caused Joe's illness... anything they could say to make me feel bad, and with their usual vitriol. I had to ignore them, I couldn't sit there and listen to them all day long, but I did nothing, just brooded and listened and tried to read up on ALS, which only scared me the more.

Finally, I made myself fight back. I concocted a homemade lentil soup to freeze in meal-size batches, so Joe won't have to eat out every night. When that was simmering away, I finally called him and was relieved to hear him sounding somewhat better, more rested, more alert, his speech a little less slurred.

Later: He came up to have some soup just now and wondered aloud if the blood pressure medication or minocycline (experimental drug for ALS but also common antibiotic for acne) could be making him tired. "Joe, I don't know. It could be anything. But it may be the ALS, don't you think?" I prodded him gently, being fairly certain it was. "Weakness feels like fatigue, it is easy to get tired when your muscles are weak."

"Yeah, I think you're right. It could be that. But if I've gotten so tired in one month out of twelve, where will I be in a year?"

"But no one knows where they will be a year from now, Joe. A lot of things could happen before then. So let's not worry about things a year in advance. This past month is all we know about."

Now he has gone down to his apartment to go to sleep and it is 8:40pm and the "music" is playing and the voices are yammering on and on about me and what a stupid f___ I am and I've eaten only yogurt and a banana all day, forgot lunch and supper and am not hungry now. But I need to eat something or I will be weak tomorrow myself, and scared at what I'm doing to myself...So I need to stop here. I will probably continue to write, though in my notebook, for a couple of hours, and then try to read until midnight, when I take the first dose of Xyrem, set the alarm for the second dose at 4am, and go to sleep.

Note: This has been a pretty average day in the Wagner household, except that the topic was Joe's illness a great deal of the time, whereas before we might have spent time inventing something together, which we did a lot, or discussing -- oh, any topic that tickled our fancy.

Posted by pamwagg at September 2, 2006 05:34 PM


Hi pam, this blog was soooo touching! thanks for giving me the insight that you give me. it's a great gift to read your blogs. feel good and yes as your other friend said, please eat! love, sue

Posted by: sue marasciulo at September 3, 2006 11:25 PM

Dearest Pam,
After reading Kate's comment(she is a treasure worthy of universal amnesty), and the comments of the incredibly intelligent Cynthia(another orchid in full bloom)I am so delighted that more voices, with more understanding of you than I could ever have because they share your illness, have joined me in commenting on your ever provocative blogging. If you recall, although I truly admire your physicians, I noted that despite their clinical experience and knowledge, they, themselves, have never experienced SZ, which cannot help but hinder them somewhat in their efforts to help you. I liken the whole thing to my experience about passionately arguing that I simply did not want a spinal tap. Every physician with whom I spoke assured me that it was nothing. I was even told that spine tapping was the next thing they learned to do after mastering drawing blood! Yet when I asked each one of them if he or she had actually UNDERGONE a spinal tap personally, the answer was a sheepish, "No," EVERY time. Now that I've opened Pandora's box, however, I realize this is the way of the world. Joe's doctor has not had ALS, the late Christopher Reed's doctors were not totally paralysed etc., etc. Despite the fact that I have now proven that I'd be a washout on a debating team, I hold fast to my original joy at your discovering that you have such wonderful, insightful, and understanding new friends due to the siren call of your blog. Their importance is magnified in my eyes because they
have occupied your shoes while I have not. I, like your physicians, am hampered by my lack of actually experiencing the sound of the voices that I so despise who taunt you, degrade you, and command that you hurt yourself. I have said this before, but even without having had the experience, I implore you to strip them of the power that they DO NOT HAVE. They are NOTHING. Pretend that the noises they make are as impotent as that tree falling in the forest, and you are NOT there and so you can not, WILL NOT hear a thing. What you can concentrate on now are the melodious voices of your new friends who have come a long way to read your words,admire and suppport you, and clearly show your voices that they LIE,LIE,LIE.
I believe I am finally done for now.
Lovingly, Paula,swinger of birches

Posted by: Paula Kirkpatrick at September 3, 2006 09:58 AM

Dear Pam,

I sleep in my clothes too and don't change anything for days. Luckily I don't happen to be a very smelly person, but I want this to change. I make an effort when I go out to see my brother or shop to at least change my shirt. I was very pleased that the other day I actually did a load of laundry.

About not wanting to be intimate, well, I can relate. Except for a few minutes several years ago (which I new almost immediately was a mistake but I was in the midst of a psychotic break at the time...), I haven't been sexual with anyone but myself for the past eleven years and this past year not at all. Unlike you, I would love to be hugged. In fact, that was one of the hard parts about being psychotic was wishing someone would just hold me and nothing more. I associated that with being safe and comforted. Schizophrenia is a lesson in isolation. I am content with this isolation for now, but know I will end it within a year. And when I do, I hope I am as lucky as you in finding a platonic relationship with a safe, kind and bright man like Joe. After making a mistake one time with an abusive boyfriend, I know that a firm friendship must come before any kind of mutual sexuality. It may not be with Joe, but I do hope that someday you will be able to be touched by and to touch someone else. I know there's a kind of perverse safety in not being touched and in avoiding mirrors, but I also know as a way of life it's a bit unhealthy. Well, I have hope for both of us.

Please eat.

Kate :)

Posted by: Kate K. at September 2, 2006 10:17 PM

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