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After Lou Gehrig's Diagnosis, an Attempt at Group Support

Updated on September 20, 2018
Kimberly G Tucker profile image

As artist/autist/writer, Kim has work in many anthologies, magazines, etc.. Her memoir: Under The Banana Moon (life on the spectrum)

Howie
Howie

It may work for others, It wasn't for us...Support through groups

A Group Thing

We went to a support group at the hospital and sat at a long table amongst people with various stages of the disease.

One woman lost use of her hands and vocal chords, leaving her no means of communication; but she walked just fine. Others were in wheelchairs and in the throes of the “last stages”, with machines all around their chairs.

A stubbly man rasped through his mask, “You're. Angry. Aren't you? You're angry right now”. His name was Jack and every syllable was labored. He could turn his eyes my way, but not his head.

“I have three kids”, I stated.

Jack was trying to smile around his face mask. A lawyer was introduced by a social worker. He rose and gave a speech on what to do with your assets in the event of your demise.

“I have three kids”, I said to an open-faced woman with a bob haircut who glanced at me. The room was bright, the table glaring.

The advice was practical and one man, who was there with his wife showed little symptoms. He too had a little muscle twitching (vacillations) and severe weakness of muscles but did not show outward signs, either in speech or mannerisms. Newly diagnosed, like Howie, he asked questions and he and his wife took notes. They asked that if further down the line, insurance should drop him, maybe would it be wise to fake a divorce so they could qualify for more benefits? Good, good, they wrote down, 'yes', some people did that. It was a possible plan for them. Next question: Should they secret their money, put it in the kids' names for protection? Oh yes...answered the lawyer, this disease often takes people for all they've got. The couple lit up, the woman taking notes, another possible plan.

At the end of the meeting we made for the door; me slowing my pace to match Howie’s new pace. A woman who was very showy emotionally and was there to ‘support’ her father (who was chair-bound), was blocking my departure to the outside hall... I got by her but she cornered us outside. Holding a doughnut shop coffee container and twiddling wadded tissue, she assaulted me with her wet eyes full in the face and told me her name.

“I'm Sally”, she said and smiled like a sad model. “This is my Mom and here's my Dad”. The huge smile was a prosthetic limb being waved in the air for all to see, dis-attached from the rest of the body, yet waving there, boldly. Should I too learn to flash that artifice?

Howie smiled genuinely, I thought, and he said, “Hi, nice ta meet you”. He lit up his cigarette with two hands to steady the Zippo; all the while glancing around for a chance to flee but we were cornered.

The older man in the chair appeared to have no use of his lower body but his arms seemed okay. He said, “Look at me”. We did. He said, “I've had this monkey on my back how long now? Two years, goin' on two years and look at me, I’m doin’ just fine”.

“I have three kids”, I said; my mouth tight.

They agreed it was nice to meet us. “I have three kids, I mean we do”. I reminded them, summing up the struggles ahead; that my mind was reeling with, leaving much unspoken in my simple statement: Jeremy may be at the teen years when Howie loses his life, it is unfair to Kerry who was just starting Kindergarten to go on in life having lost her father at a young formative time in her development. All this, my statement didn't say but did say to them. Jeff; he could not articulate daily life stuff; never mind loss.

“And my parents also have three, of which I am one”, declared the woman, Sally.

We have three, three kids”, I told them.

At last they high-tailed it to the van and disregarded us. We headed toward the car ourselves. “Wait!” I squealed and turned to Howie who flicked away his cigarette. The act angered me as always; it would not biodegrade there in the gutter, especially the filter; it would dry out and blow around for an eternity.

I went back inside, down the short expanse of naked hospital and into the room where we'd been and there, on the table, was a pile of books. People were milling around the lawyer, still asking questions, and the matronly ‘therapist’ or ‘moderator’ of the group was beginning to take notice of us but couldn't immediately break from her conversation to say hello-goodbye. She was glancing our way. Howie behind me, I picked up a book, Tuesdays with Maury, and held it for him to see.

“We liked this movie; I thought I should like the book even better. She said we could borrow any book we want”, I told him and I made to tuck it under my armpit.

“No”, he said in the voice he reserved for Kerry if she were about to touch something hot. “Put that down. Let's get the f$#k outta here”.

“But why?” I asked, obeying him and following him to the exit.

Even though he was weaker, he walked five paces ahead of me and I hurried to catch up. He turned to talk my way as we hurried outside. “Because if we borrow that it means we have to come back”.

“Oh”, I said, pretending to understand the logic and understanding it later.

This collage I did of myself and my cat. Animals and art help get me over stressy life events
This collage I did of myself and my cat. Animals and art help get me over stressy life events

Tuesdays with Morrie: by Mitch Albom. My husband, diagnosed With ALS, learned the value of legacy from this

Kimberly Gerry Tucker speaks about minding the feeding tube, being a fulltime caregiver to her terminally ill husband Howie, who had ALS

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