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 husbands stroke 10 years ago.
Every time weve 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 Johns process of healing.
Central to Johns healing is therapy, an unheralded, under-appreciated, and
under-funded component of health care. Whenever theres a belt-tightening, therapy
benefits are too often the first to go.
I used to get angry when Johns therapy regimen was challenged by the bean
counters. Now I dont 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 Johns 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.
Thats 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, hes
got a year left."
"Hes 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 theres 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. Heres 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 cant 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 whos 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:
"Youve got mail."
"Go to hell."
"Let us pray."
"I love you."
So I dont mind justifying our existence, three words at a time.