SORTING THROUGH
TO A RIGHT PLACE AND TIME
Journal of Healing – Dec. 31, 2003

By Mary Koch

It will take a while to sort through the greetings, letters and news that flood our home during the holiday season. It will take a lifetime for my mind to sort through a couple of them.

Because of my husband’s rare medical diagnosis, and by virtue of the Internet, we are in touch with an international community of people with Locked-In Syndrome. Like my husband, their minds are imprisoned by a body that cannot move or speak. In most cases, LIS resulted from brain-stem stroke. The age range is teen to octogenarian.

From Otago, New Zealand, we received a news story about 30-year-old Nick, who has been locked-in for three years. He is progressing steadily, however, thanks to an innovative therapeutic weight-lifting regimen.

Jimmy, 35, in Atlanta, Ga., has been locked in for two years. A grading contractor at the time of his stroke, he would no doubt love the chance to lift weights – or do any kind of therapy. But he’s lucky just to get out of his hospital bed for brief respites in a wheelchair. He is, as his wife says, "stuck" in a hospital because no nursing home or rehab facility will accept him and his need for high-level care.

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THESE TWO GUYS could be poster boys for two very different national healthcare systems. LIS patients are rare but not unique in their plight. Treatment and care for anyone who is severely disabled depends not so much on who you are, but where you are – and when. I wonder if Jimmy, a Gulf War veteran, ponders whether he’s in the wrong country at the wrong time.

For my husband, the right time and place were10 years ago on the rehab floor at the University of Washington Medical Center in Seattle. A dream team of therapists laid the foundation for hope in a life that seemed utterly destroyed.

Marvin, who was part of that team, called just before Christmas to see how John is doing. Marvin had started out as a physical therapist, then combined that training with a native genius for mechanical and technical problem-solving.

He spent hours with my husband, parlaying John’s few voluntary movements (a slight lift of the eyebrow, a minimal turn of the head) with technology that would operate a wheelchair or computer.

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MARVIN'S "OFFICE" was really a workshop, crammed with every imaginable device, screw and widget, so jumbled only an earthquake could organize it. Yet he could pick out the precise bit of metal or plastic to solve an immediate problem. His office door was plastered with news clips and photos of disabled clients who made headlines by overcoming their personal disasters with that essential combination of determination and technology.

When Marvin called, I learned that 10 years ago was the right time not only for John, but for the long line of patients who waited in wheelchairs at Marvin’s door. Now would have been too late. The funding for Marvin’s program was cut. Now he repairs medical equipment, never sees a patient, and is thinking hard about retirement. I’m trying not to think hard about the people who could still benefit from his talent but won’t.

I’m reminded of Dickens’ classic phrase – the best of times, the worst of times. It is best to approach a new year with hope, even if that hope may be tinged with apprehension. And if the new year brings us the worst, may we be in the right place with the right people to turn it into the best of times.