|Home | About | Donate/Volunteer | Contact | Jobs| Early Schizophrenia Screening Test||
I did go to the ALS support group with Joe and Karen after all, though the support given is all informational, not emotional as one would both hope and expect, given the nature of the illness. I was surprised by this, as was Joe, but I said to him that most people are not used to talking about their feelings and perhaps they would find it threatening to deal with the intensity of emotions brought up when talking about a terminal illness in a group of strangers, especially without a professional guiding the group. So for the most part, people keep a stiff upper lip and maintain composure and good cheer, telling happy stories and accomplishments, not dwelling on their losses, which is, I think, not an entirely bad thing.
Joe has a tendency to refuse to do anything at all that changes his normal behavior and suggests that he is different from before he became ill, such as drinking while dipping his head towards his chest to minimize coughing and taking pills with pudding or yogurt. I told the group this and said he just didn't want to do these things. One man said, "Well, that's too bad, but there are lots of things in life that you don't want to do but you do them." In essence telling Joe, Get over it!
Unfortunately, Joe has a very thick skin, and this neither stung nor impressed him. At lunch, therefore, while he drank only water, a nod to the fact that I'd told him aspirating coke or iced tea could cause pneumonia, he refused to dip his chin while swallowing and so coughed throughout the meal. Why? Probably because he felt it was too hard or too different, or he didn't want to, simple as that. Though he complains about coughing and how much it embarrasses him, I can't seem to get through to him that his own behavior contributes to it.
Anyhow, the person I feared from the ALS Association did come, and smiled at us when we introduced ourselves, though I sent only a small glance her way of acknolwedgment, not wanting to irritate her further, though I still didn't know what I did wrong. She did seem harmless to most people, if not to me. But afterwards, when she said hello, and offered her hand, I gave her my fingers and barely looked at her, didn't really, and quickly left, not wanting my presence to bother her or anyone there any more than it already did.
Later, I realized that there were other explanations for the interaction and her smile and offering her hand, and that I may have been mistaken in thinking she was still or ever had been angry with me. But it took others telling me what they saw and thought for me to understand this. Now my paranoia is less, or less attached to that situation at any rate, and I mostly feel bad that I treated her apparently so badly, since she had no idea I felt as I did, and that I was afraid of her.
The following is a new poem, based on fact, though it needn't be.
AFTER READING THAT IT IS MATHEMATICALLY IMPOSSIBLE
TO PREDICT THE WEATHER FIVE DAYS IN ADVANCE...
Author’s note: Ringing changes is a method of bell
ringing practiced in bell towers and today’s hand-bell
bands in which 4 to 12 bells are rung in strictly
ordered sequences or one-use-only permutations.
Posted by pamwagg at October 6, 2006 09:09 PM
Today the rain darkened like nightfall,
curtaining us in sudden pewter
on our way to the furniture store
to look at “wall units”
for holding books and paper
and all the myriad ends and oddities
that make my writer’s life
after a lifetime of hospitals.
Sodden in the sudden flood,
we pass an Olive Garden and stop
for soda, for lunch, to get
off our feet before the next dive
into commerce. When we leave again,
sunlight’s platinum limns the gray
and we are two women
on a mission. Still, you tell me
as we get back in the car
how you once lived
a professional traveler’s life,
Paris to Hong Kong
and all the continents in between,
a suitcase your snail shell, each trip
an educational orgy
you’ll never forget now that you can’t
work any longer and must live
on a meager Social Security,
your savings, never large, long gone. Life
I assure you, is a beach, no pun.
First the tide swims heartily
high upon the sand, lapping at dunes
and sharp salt grasses,
then it is sucked back out to sea
just like reversals of luck and fortune
for nothing lasts but change,
which is constant.
Church tower bells once
solemnized these permutations,
boys lifted featherweight on ropes
to the rafters, up they swung
and down, up—
and down— a majestic peal
changing the ringers
ringing the changes.