October 06, 2006

A new poem and more

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.


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.

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.

Posted by pamwagg at October 6, 2006 09:09 PM


Dear Pam,

I am very suprised that the ALS support group is not really a support group. What a shame. Perhaps you can enquire as to whether there are other support groups, even ones for those with other illnesses such as cancer. You and Joe really need some kind of support group that deals with coping emotionally with terminal illness. Also, are there any online groups for ALS sufferers and their loved ones? That might help as well.

Joe's resistence to change is probably a natural reaction against his illness which, over time, will drastically change his life. He is very lucky to have you as a friend who can give him a reality check and support as his illness progresses. He will learn I'm sure to adapt.
As you said in your poem "for nothing lasts but change,/which is constant". All of us have to come to terms eventually will all kinds of changes, especially the certainty of death, but there is comfort in thinking of life as a beach with the tides going in and out. We are born, we grow (and hopefully thrive) and then we die and as we die someone else is being born and life (and death) goes on.

I'm glad that the person from the ALS Association treated you kindly. Another reality check. Just remember that you have a history of misreading people's attitudes and intentions, so you'll have to be as careful about judging others as you are about creating a poem. And I think you are learning a great deal. Many schizophrenics never get to the level you've achieved where you can turn to others to help you judge a person or situation.
Way to go Pamela!

Thanks for the poem, I really enjoyed reading it.

Affectionately Yours,

Kate :)

Posted by: Kate K. at October 8, 2006 01:41 PM

Dear Pammy,
Despite the ambiguity you expressed concerning the tone of the ALS meeting, I had to smile. Although I have never met Joe, I have spoken to him on the phone frequently enough for me to form my own opinion of his personality. It appears that my Scorpion intuition is still very finely tuned, for his,"It's my way, or the highway," attitude which I had quickly discovered is described beautifully in your blog. He is such a dear and loyal friend, but I'm sure that you have had to count to ten quite a few time during your long friendship,even before ALS entered his(and your) life. In some ways he is quite like me. My mother referred to me at times, rather euphemistically, as "thick". I believe that term fits Joe rather nicely, as well.
Your poem is Pam Wagner at her purest, harking back to the style and content which spurred me on to write my first letter to you. To quote myself in a little poem I once wrote,
"It sings your song, it hums your tune, it takes my breath away." With that I think that that is all I'll say today!

Admiring the so very admirable,
ET(the adverb "so" modifies the adverb
"very" which modifies the adjective
"admirable"-I just had a hunch that
this analysis would thrill you-tee hee)

Posted by: Paula Kirkpatrick at October 8, 2006 09:16 AM

Hi Pam,

I love your new poem. You've described the changes each of one us faces daily so well. One thing we can be sure of .... nothing stays the same.


Posted by: yaya at October 7, 2006 01:49 PM

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