Patient's letter begs Bush to fight stigma of AIDS

WASHINGTON — WASHINGTON -- Belinda Mason describes herself as a "hillbilly from Eastern Kentucky, a small-town journalist and reliable Tupperware party guest," and she has written President George Bush a letter.

"In these days, which will be my last, my family has become my respite from the storm," wrote Ms. Mason. She is at home, so weak that she is "in my pajamas all the time," as she says.


She is dying of AIDS.

Ms. Mason, a former reporter for a Kentucky newspaper and a short-story writer, says she will use whatever gifts and time she has to try to help others. And so on Friday, she sent the president a sort of last plea, a plea that he use his influence to keep people with AIDS from being stigmatized.


Two years ago, Mr. Bush named Ms. Mason to the National Commission on AIDS, a panel set up to establish a national consensus on how to deal with the disease, because she herself has acquired immune deficiency syndrome.

rTC She contracted the disease from a contaminated transfusion. Because of that, she says, she has been spared the stigma -- if not the suffering -- that AIDS carries.

She says she has been given a stage, bigger than that granted to others who have the disease. "If I was a young woman of color in the Bronx, I wouldn't be standing up and talking AIDS," she wrote the president. "I'd be home worrying about how to pay the rent."

Ms. Mason was infected during the birth of her second child in 1987. The birth was an emergency Caesarean; she hemorrhaged, her uterus was removed, she went into cardiac arrest and lapsed into a coma for days.

Because the initial emergency occurred on a weekend, the staff members at the hospital in Eastern Kentucky who would have tested the blood to be sure it was not contaminated with the AIDS virus were off-duty. Fearing that she would die if she did not have a transfusion at once, the doctors gave her one.

The blood platelets she received were contaminated.

"Because of the way I contracted AIDS the audiences of businessmen, church leaders and college students I speak to are spared a confrontation with the messy realities of sex and drugs," she wrote last year in a personal essay published in a newspaper.

Although she was infected through lapses by health-care workers, she says she is not angry at them. She does not want widespread compulsory testing of them, nor does she want people with AIDS to be barred from entering the country -- both current proposals in Washington.


She offers an image opposite to that of Kimberly Bergalis, the 23-year-old Florida woman who apparently was infected by her dentist and who has spoken out angrily in favor of compulsory testing of health-care workers, telling the doctors of the Florida Health Department in a letter: "I blame every single one of you bastards."

Ms. Mason says it is too easy to feel separated from others who have AIDS. "That's the innocent-victim syndrome, and I don't like it. In my bio put out by the commission, it says I got AIDS from a transfusion, but I've asked them to take that out. I don't want to be considered different."

She and Ms. Bergalis have become two grim symbols in the social drama that is AIDS and both are pleading with their final strength to try to change policy -- though in opposite ways.

Ms. Bergalis wrote a letter to doctors that was published in Newsweek and quoted widely after her parents released it. "My life has been sheer hell," she wrote. "Who do I blame? I blame Dr. [David] Acer and every single one of you bastards. Dr. Acer was infected and had full-blown AIDS and stood by not doing a thing about it. You are all just as guilty as he was. You've ruined my life and my family's."

Dr. Acer has died of AIDS.

Ms. Bergalis made a plea for doctors and other health workers to be ordered to get tests for the AIDS virus, to disclose the results, and stop practicing if they are infected.


The letter was entered into the Congressional Record by Sen. Jesse Helms, R-N.C., who has proposed a law that would jail any doctor or other health worker who is infected and continues to treat patients.

Ms. Mason's letter to Mr. Bush is not angry. "At this point in my life, there is little that you or anyone else can do for me, but I have no bitterness, and I'll spare you the terrible details of this late stage in my disease."

In a telephone interview Friday from her home in Kentucky, she said: "I'm not bitter and never have been. I've encountered hardship. I sometimes think of those people who screwed up and did this to my life, those who released the infected blood without checking it.

"But the bitterness puzzles me. It seems to me that it's based on an assumption that things are supposed to be easy in life, that what happened is not fair and shouldn't have happened to me. This occurs to people, particularly people like me who got AIDS from a blood transfusion and Kimberly Bergalis, who got it from an unfortunate contact with her dentist.

"But the question is, why should it happen to anybody? I never felt I was a member of an exclusive club that should go through life unscathed. I suppose if I say this it sounds hokey, like &L; 'Pollyanna gets AIDS,' but I have always had wonderful things in life."

In her letter to Mr. Bush, she speaks of life and of AIDS and of the country's struggle to come to terms with the disease. "There is no time for me to do much more about any of this.


"But there is time for you. Mr. President, doctors don't give people AIDS -- they care for people with it. The blanket screening of health care workers will create the false illusion that people with AIDS are a threat to others."

And she wrote of those yet to get sick and die: "Mr. President, those who are coming after me are counting on you."

Though she is a member of the commission on AIDS, she is not sure how much good she or it could do other than keep the epidemic and the suffering before the public.

As she has worked at it, she says, "I have become the disease. When people talk to me now, they see the disease first; nobody talks to Belinda Mason the short-story writer any more. My previous identity has dissolved. . . . I've become an AIDS poster child."

But now her disease has progressed to the point that she doesn't leave the house any more. "Sometimes I forget what I'm saying in the middle of a sentence. I am constantly confronted with the obvious losses in my life, but one of the greatest is the diminishing of my intellect; I used to have a razor-sharp tongue and I could use my hillbilly wisdom, fly by the seat of my pants. That used to define who I was; now AIDS has consumed my identity."

As for her own life and her fading energy, she says she feels guilty sometimes. "I'm home with my kids, but I haven't spent as much time as I should with them still. My son gets only the low-energy things -- read a book, play a game."