SOMETIMES A GUY'S GOTTA
SPEAK UP FOR HIMSELF
Journal of Healing – Sept. 1, 2004

By Mary Koch

My husband was a man of words before his stroke. Now he's a man of precious few words.

As journalists, we hone our skills to report the most information in the least number of words. As a stroke survivor, John has refined that craft into an art form.

A lot of this has to do with economy of energy. Sometimes I can understand a word when he merely shapes it with his lips. Occasionally he can actually "say" a word or two, barely audible but understandable. Most of the time he has to spell out the words by blinking his eyes, letter by letter. A tedious exercise.

Sunday morning he spelled, "I am here."

"You are here," I agreed. "I know you’re here. What do you mean?"

He spelled more.

"Your cupboard. Your hou . . . "

"My house," I completed, as the light dawned.

* * *

A FRIEND AND I had been discussing a renovation project in the kitchen. I was going to paint the walls, which haven’t been painted in 10 years and are approaching greasy spoon status.

But you know how projects grow. "As long as I'm doing this, I may as well . . . "

Painting the walls leads to a new color scheme, which leads to painting the cupboards, which leads to new shelves, new light fixtures, new flooring . . .

A flurry of planning and possibilities as John sat in the next room, listening. The kitchen, once John’s favored domain, had become unintentionally, exclusively, mine. It doesn’t matter that John can no longer cook and eats very little, the kitchen still represents the heart and soul of OUR home.

"You know I wouldn’t do anything without your approval," I protested guiltily. He looked at me silently. Approving finished plans is not at all the same as helping to develop those plans.

* * *

TYPICALLY, writes Beth Witrogen McLeod in her excellent book, "Caregiving: The Spiritual Journey of Love, Loss and Renewal," when a spouse becomes ill or disabled, the caregiving spouse "becomes a wallflower," the person others look past, the person pushing the wheelchair.

Anybody who’s been around me would snort at that. I’ve never been a shrinking violet, and I think many times, caregiving can empower the well spouse. Because we have to, we take on more responsibility, more challenges and single-handedly make more tough decisions than we ever thought possible.

But then we find ourselves flying solo in what is supposed to be a marriage. There’s such a thing as being too efficient, too independent. In my efforts not to bother John, I also have to remember not to leave him out of the picture.

My friend in Georgia, whose husband Jimmy also is "locked-in" (unable to move or speak), e-mailed recently that Jimmy pulled his brother-in-law out of a jam. The brother-in-law’s septic tank was backed up, and Jimmy spelled out instructions for solving the problem.

"Some people think we shouldn’t bother Jimmy with such issues ‘in his condition,’" she wrote, "but the smile on his face said it all. He loved still being a part of it, even though he couldn’t physically help."

Sunday evening we held a summit conference in the kitchen – John, our advisor and I.

"These cupboards should be kind of a ‘putty’ color – but that’s not the right word," said the advisor.

"Adobe," John spelled out. It was exactly the word we needed.

© Mary Koch, 2004

(Mary Koch writes about health care issues and her experiences as a family caregiver. Her husband, retired newspaper publisher John E. Andrist, was severely disabled by a stroke in 1993. They welcome your letters at P.O. Box 3346, Omak WA 98841 or e-mail them.)

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