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I'm afraid I did it again. I wrote a whole long blog entry and LOST it. I will try to reconstruct it as long as I have the energy, but I dunno how much I can do of it.
We went to the Connecticut Book Awards -- I'm just gonna condense this as it no longer interests me to describe it -- and I immediately knew we had not won as there were only 8 awards (pewter lamps) on the dais table for 8 categories, whereas there would have been 9 had we won! So that took the wind out of my sails for the first few speeches but by the time the biography/memoir prize was announced, I had recovered enough so that when Roya Hakakian won, I was even happy for her as I had predicted her book, JOURNEY FROM THE LAND OF NO would win, a memoir about her girlhood in revolutionary Iran. I haven't read it, no, but I had heard it was quite good, and moreover it was just too topical and too appropriate to the moment not to interest everyone. However, after all the prizes were given out, one of the judges came up to me and told me that our book was really terrific and that the choice had been very very difficult...So that made me feel better.
Here's a poem about losing:
In the short light and coming cold, the trees
lose their leaves to the pull of the ground.
They do not grieve, knowing they bear others
in their bones and that winter is kind and necessary.
Dog-eared, torn, coffee-stained, the book
loses its jacket in the first months of its using but does not
regret the content that thrills between its covers.
The beach loses part of itself to each tide,
the wave sidling up and snatching grains of sand
before sliding stealthily down into the sea again.
Losing anything hurts – keys, a bet, your shirt, your temper.
Losing a friend, spouse or child particularly shatters:
we are all like glass waiting for the hammer.
In this scheme, then, what is losing a competition
to a better winner? The ego loses face and fat
but some would say that is not so bad.
Otherwise we gain humility’s gauze,
a future yet to be attained, open to question,
and something we can live for, not only die with.
The ending I mean to read as We can live for a goal to be attained in the future whereas a past goal already attained is only something that we can die with the knowledge of. It is no longer something to strive towards, in other words.
Not my greatest work, but passable, I think.
We had some bad news about Joe today when we got the results of his sleep study. They said he had 18 apnea episodes an hour in general and 43 an hour during REM or dreaming sleep. Apnea means a brief episode of not breathing, often broken by a brief awakening to take a breath, rarely consciously, then falling back asleep, though they didn't say if Joe did this or not. They termed this "Mild to moderate apnea" which was good news, I suppose. But what was bad was that they said his O2 (oxygen) levels dropped very low when he slept at night without the bipap breathing machine. In fact, they had to give him oxygen in the middle of the night because of this. I don't know how low it fell, because I couldn't see the sheet, but Joe is bringing home a copy for me to keep with his other records so I will see the results then. This does not bode well if he takes off the bipap at night and forgets to put it back on. I hope he has been scared at least enough not to, though I fear he does it while so sleepy that he doesn't really know what he is doing and can't help it.
One thing I did mind was that he asked the doctors if his breathing and O2 levels were going to get worse, and they didn't give him a straight answer. They fudged it, and I don't know why. It may be because he had told them about his schizophrenia, they were afraid he couldn't handle the truth. But they don't know Joe. He wanted the truth, and was owed the truth. And I think I need to call them and tell them that. Or at least have Dr O tell them that, since she works with them. They talked to me openly, tellling ME there was no hope. But to him they said, well, you might stabilize and have no more deterioration. But those chances are very very slight indeed. .001% to nil. And with his kind of ALS, it is doubtful that it is even possible. ALS is a uniformly fatal disease, Stephen Hawkings or no Stephen Hawkings and whatever disease he has.
But Joe is not that badly off yet. After all, his O2 during the day is 95% and he seems to breathe fine without the bipap then. With more advanced stages, you need the bipap day AND night, and eventually you need to choose whether to have a ventilator and tracheostomy or pass away, if you live long enough to make that choice. We're hoping Joe will, as he wants to try the ventilator route for as long as it is bearable for him. But he has to survive the nights on the bipap first in order to get to that point. There are so many things that can go wrong: he could choke on his thick secretions, for one thing. He could leave the mask off and die in his sleep from too little oxygen. He could aspirate and die from pneumonia, or catch a cold and have that turn into pneumonia too.
So many worries...But he remains as upbeat as possible and I take my cue from him. Now the visiting nurse has come so I must stop. TTFN BDPosted by pamwagg at December 4, 2006 06:28 PM