The Unsung Presence That Hovers

Pearl L. Lewis

December 18, 1990|By Pearl L. Lewis

SEVERAL YEARS AGO my daughter Rachel, as president of the senior class of Western High School, participated in graduation ceremonies. Then-Mayor Schaefer was handing out the diplomas. Things were moving slowly and he turned and remarked to Rachel, ''when you get to be my age you'll move slowly, too.''

Little did we know that in a few short years the prospect of Rachel attaining Mr. Schaefer's age would not be a given. In 1988 Rachel was stricken with hemolytic uremic syndrome. At that time the thought of Rachel having end-stage renal disease, losing her insurance coverage and being dependant on the state's kidney-disease program was the furthest thing from my mind.

It was not that I was unfamiliar with chronic illness, its impact on the individual and family, issues of reimbursement, access to quality care, research and development or other areas of concern to any segment of the health-care community. At the time my daughter was diagnosed, I was national director of patient advocacy and government relations for the National Foundation for Ileitis and Colitis. I have faced life-and-death situations directly related to a third-party payer or to government's failure to recognize that various procedures and medications are necessary to sustain life -- or in spite of that recognition to budgetary decisions not to cover the service.

In 1988 when Blue Cross and Blue Shield terminated Rachel's coverage the kidney-disease program was there to provide my daughter with medical treatment. Now the program itself is threatened. The Schaefer administration is in effect issuing a collective death warrant for people who have committed no crime, for people who are victims, not perpetrators. Who among us will speak for the victims?

Why do I write? Is it because of Rachel? Those of us who have seen our child, or any child, suffer would find that reason enough. It is because I know the paralyzing fear that envelopes one when afflicted with chronic illness and threatened with loss of the payment mechanism that provides life-saving treatment. I have heard the panic in the voice of a person forced to choose between medication to sustain life and buying food for a child. I am familiar with HMOs that will remove a rectum or bladder and then call the ostomy appliance a ''convenience item'' and deny coverage. No matter what the disease, the issues are the same.

In 1989, a year after Rachel, her older brother Greg was diagnosed with hemolytic uremic syndrome. I suppose I can say my family has been chosen. We are one of 81 families in the world with a family risk of the syndrome. We have learned more abut HUS than we ever cared to know. We cannot predict whom else will be stricken: will it be Jodi, will it be Kate?

My children represent the third generation afflicted with the disease. The children's natural grandmother died of what they then called Bright's disease. In 1966, three weeks after Rachel was born, her natural mother died of what was then called scleraderma of the kidney.

The reality with which my family, indeed all families afflicted with chronic illness, must live can best be conveyed by these words.

The issue is not death. It may even be that death is a kind of refuge from a less dramatic, but more real source of anxiety, chronic illness. Death is too final, too spiritual, too grand, the stuff of art and philosophy. There is none of that in chronic illness. Chronic illness is the unsung presence that hovers, fluttering like an uncertain bird of prey.

Chronic illness lies in a deep chasm between remote rims of acute illness and non-illness. There is no health; it involves constant perterbations of sensation. These may not even deserve the word pain, but they are transformed by the cerebral cortex into agony.

There are waves of hope and despair with restless fingers searching for remembered aches. there is fatigue, irritability, and an endless preoccupation with numbers on lab reports and how one feels. Mainly there is waiting in doctors' offices, dialysis units, drug stores and for and in hospital beds.

Health becomes less of a memory, more of a mirage -- thin, unreal, longed-for.

What fiscally driven government intervention in the health-care delivery system does is fragment this systemic disaster into modules of diseased organs. In the process that unique and indispensable commodity, is lost.

Today, the threat of death is our reality propelled by the actions of an administration that appears to value bricks and mortar and salary increases over human life.

We must not allow ourselves to capitulate in the face of adversity. The power within is incalculable, but something must happen to activate that power.

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