Three Words
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THREE LITTLE WORDS
PACK A WALLOP
Journal of Healing – Feb. 4, 2004
By Mary Koch

Much of this week has been devoted to an exercise I call Justifying Our Existence.

This kind of thing has come up regularly since my husband’s stroke 10 years ago. Every time we’ve changed insurance, or insurance personnel have changed or the system has changed – and health care has changed exponentially over these 10 years – we start all over again, justifying our existence and John’s process of healing.

Central to John’s healing is therapy, an unheralded, under-appreciated, and under-funded component of health care. Whenever there’s a belt-tightening, therapy benefits are too often the first to go.

I used to get angry when John’s therapy regimen was challenged by the bean counters. Now I don’t mind. It allows me to inventory the successes of these 10 years. John has built a strong case for therapy, not only for himself but for other stroke patients, especially those with John’s diagnosis – Locked-in Syndrome – a functioning mind locked inside a body that is totally paralyzed and unable to speak.

For 10 years, John has flown in the face of conventional medicine. At first we were told that if stroke patients regain any function, they do so only in the first six months to two years after their stroke.

That’s self-fulfilling prophecy and a convenient way to eliminate therapy benefits after six months to two years. There is a growing body of literature that demonstrates stroke patients can make gains 10, 20 and even 30 YEARS later.

* * *

ABOUT A YEAR after the stroke a young, fresh-out-of school therapist who worked briefly with John was discouraged by the slow progress but chirped: "Well, he’s got a year left."

"He’s got an entire lifetime left," I retorted through clenched teeth.

The conventional outlook for Locked-In Syndrome patients is especially dire. Their progress is slow, so the official view is that there’s no progress. The National Institutes of Neurological Disorders and Stroke says this: "The prognosis for those with locked-in syndrome is poor. The majority of individuals do not regain function."

More self-fulfilling prophecy, because the "majority of individuals" are not given a chance. Here’s what the French-based Association of Locked-In Syndrome says: "Through re-education (physical and speech therapy) progress is possible. In order to get out of their isolation, reduce their handicap, the patients must learn how to move a finger, swallow, breathe without assistance, utter a few words and start living a ‘second life.’"

The U.S. view is all or nothing at all. If we can’t fix it overnight with a pill or brain surgery, forget it. The French view opens the door to a second life, and the key to that door is therapy.

Anyone who’s tasted a second life – the renewed life that comes after surviving a tragedy or illness or maybe recovery from an addiction – knows that the second time around is indeed wonderful.

* * *

LAST WEEK John's speech therapist set an ambitious goal for him. In six months, he should be able to speak short phrases (average of three words) and be understood 70 percent of the time.

Some might scoff that a man who once wrote and spoke volumes should find satisfaction with a mere three words. But there are times when three words have changed the course of history.

"Somebody shot Kennedy."

"California or bust."

"Remember the Maine."

"He is risen."

Anybody can pack a lot of power in just three words:

"You’ve got mail."

"Go to hell."

"Let us pray."

"I love you."

So I don’t mind justifying our existence, three words at a time.

© 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.)