Miami Herald (MH) - Sunday, July 28, 1991
Elinor Burkett; Herald Staff Writer

Her body has never suffered toxoplasmosis or pneumonia. She is not infected with HIV. But she is one of thousands of older Americans whose lives have been torn apart by AIDS.

For the 59-year-old grandmother, life became dominated by AIDS when her son Doug was diagnosed in October 1986. His brother Scott was diagnosed four months later. Both boys died in 1988.

But Segal's life still is dominated by AIDS. "Sometimes people look at me and ask if anything is wrong," she says. " 'What else could possibly go wrong,' I answer. 'What else could possibly happen to me that would count.' "

Segal is angry that her two grown sons died because they received HIV-contaminated clotting factor to treat hemophilia. She is angry that her sons' lawsuit against the companies that collected and processed the infected blood failed.

She is mostly angry that no one wants to hear her story. No one wants to publish her memories of the five-year struggle with AIDS.

Segal is a survivor of a disease that evokes little compassion for its patients -- and even less for their caretakers. As researchers begin to study AIDS and the elderly, they look at how the demands of the expensive syndrome compete with the needs of America's aging. They are beginning to ask questions about HIV-infected seniors.

But few pay much attention to the mothers who, after decades of caring for growing children, spend years more caring for dying ones.

Few pay much attention to someone like Maxine Segal, who kept her sons alive through countless hemorrhages only to watch the drug that had stopped their bleeding take their lives.

Volumes have been written about caretakers of cancer or Alzheimer's patients. But Segal's story was rejected by 10 publishers: Nice job, they said, but there is no market for books about AIDS.

Segal was not thinking about markets when she began to write a diary in early 1987. She wasn't writing to sell. She was writing to stay sane.

"I couldn't talk about it but I could write about it. I had to write. I had to make sense out of what was happening to me."

Only months later did the English teacher at Miami-Dade Community College realize the diary had become a book. In a section of Remember Us taken from her diary of Nov. 18, 1987, Segal writes about the relationship between age and death:

The character of death is determined by the term of life.

If death takes a life lived full term, it can be intellectualized as a gentle friend. My 86-year-old mother is very ill, hospitalized, and I am preoccupied with thoughts of death . . .

She is extremely frail and becomes weaker each day, fading in and out of awareness.

Sol lifts her bodily from the chair in her room back to her bed. She is 86 years old.

Watching her slip away is heartbreaking. Scott and Doug visited her last night. My conversation with Doug this morning:

"Dougie, you saw Grandma last night. What do you think?" I asked.

"I've seen her look better," he replied.

Later this afternoon I talked to Scott.

"Scotty, you saw Grandma last night. What do you think?" I asked.

"I've seen her look better," he replied.

A firm consensus. But she is 86 years old.

Several times recently she has spoken of her sisters, Sadie and Mary, in almost anticipatory terms, as if she was anxious to be with them again and certain that she soon would be. She has seen children, grandchildren, great-grandchildren and been loved by all of us. I think she will leave us with no deep regrets. And she is, after all, 86 years old.

Scott Segal was 36 when he died on May 7, 1988, three months before his 37th birthday.

Doug Segal had just turned 36 when he died on Nov. 19, 1988.

CHUCK FADELY/Miami Herald Staff

NOBODY LISTENS: Maxine Segal has written a diary about her experiences of taking care of two sons she lost to AIDS.

A MOTHER'S MEMORY: Doug, left, and Scott Segal, both hemophiliacs, died from the HIV-infected clotting drug that was supposed to save their lives.

CAPTION: PHOTO Maxine Segal, Doug and Scott Segal (AIDS)
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