I’ll call them Ben and Maggie, although I’m sure they would not object to my using their real names, for Ben wanted this story to be told. Both have been deceased for several years, but their poignant tale of love and heartbreak lives on in my mind and I want to share it with you.
Ben was gregarious and was our close friend for many years, sharing gardening information on summer evenings and recounting tales of his younger days. Maggie was more reclusive, staying at home, keeping a spotless house. Childless, they grew even closer together as they aged. Now they anticipated their 50th anniversary in about 18 months and Ben busied himself reading brochures and making plans for the celebration. Nothing, in his mind, was too good for Maggie, the light of his life.
In early spring he began to notice a change in Maggie. She left the stove burner on frequently and couldn’t remember recent events. She stumbled and bumped into the wall when walking. Then began the medical search for the problem – Alzzheimer’s, Huntington’s disease and a number of other neurological disorders were ruled out.
In the meantime, her symptoms increased. Often what she said did not make sense. She was tested at UVA and at last a diagnosis was made — Creutzfeldt-Jakob Disease (CJD) – the human version of mad cow disease. Ben listened to the dire report: The disease is rare, about one in one million; there is no cure; it is always fatal with death occurring in about one year. The only help is treatment of the symptoms. Ben was devastated — Maggie did not understand.
How Maggie contracted this disease was not known. They had not visited areas where cows were infected. Consuming neurological tissue from diseased animals can cause variant CJD—the human form. They learned that infectious proteins, called prions, which destroy the brain and spinal system, may be dormant for years, so contact could have been made long in the past. On the other hand, another form of the disease seems to fit Maggie’s case.
“It is important to clarify the differences between variant CJD and this other form of the disease, referred to as “classic” or “sporadic” CJD. Classic CJD has no known cause and occurs each year at a rate of one to two cases per 1 million people throughout the world, including in the U.S. and countries where mad cow disease has never occurred.” (WebMD)
The only good news was that the disease is not transmitted by physical contact, allowing Ben to care for her without fear of contracting CJD.
As Maggie’s physical and mental symptoms increased, Ben tried to provide a more accessible environment for her. He put up hand rails to help her maintain balance and renovated the bathroom to make bathing her safer. He installed a stair lift elevator to transport her to the garage when they had appointments to keep. No expense was too great if it could make her life a little better.
At night when she soiled her clothing, he cared for her, cleaning and dressing her, sometimes several times before morning. And when hallucinations terrified her and she cried in fear he comforted her as one would comfort a child. Ben hired caretakers to sit with her for a few hours to allow him time to shop for groceries and tend to other business, but he was determined to be with her and care for her as long as possible.
One ray of hope came when he learned of a clinical trial of a new drug for CJD. Maggie was eligible but would have to travel to California for testing several times. Since riding in a car for a half hour taxed her endurance, Ben feared the strain of cross-country air travel would be too much for her. Furthermore, he had no assurance she would receive the new drug and not the placebo. He declined the offer.
Eventually Ben could no longer handle his ailing wife and agreed to send her to a nursing home. By daybreak each day he settled into the recliner by her bedside and talked to her, although she did not respond. Nor did she pay attention to the Food Network show he kept on the small TV bought especially for the nursing home. He said she always loved to watch food shows and he hoped it might stimulate her brain.
Maggie died one year and two months after the first symptoms were noticed. As Ben planned her funeral, hoping to dress her thin body in a soft pink dress, he learned that would not be possible. He had given permission for doctors at the University of Virginia to harvest her brain for research, for he desperately wanted to do all possible to fight this terrible disease.
The body was sent to Charlottesville and the surgery was done with robots to avoid human contact with diseased tissue. Then the body was sealed in a plastic bag and returned to Roanoke for burial. The casket could not be opened. So Ben’s dream of seeing his wife lying at peace at last was not to be realized.
Two years later Ben died, the victim of bone cancer – and perhaps a desire to see his Maggie once more. I have to believe that as difficult as the end of their journeys were in this world that the joy of their reunion in the next eclipsed it completely.