Mark Ellis is ready to die.
The last of three brothers who contracted AIDS, he’s wondering, as it ravages his own body, when the disease will claim him too.
“I see my brothers and friends drop like flies around me and I wonder why I’m still here today,” said Ellis, 38. “I’m ready. I’d just as soon it be today as it is tomorrow.”
But the disease operates on its own timetable. And as Ellis, his wife and children wait out his own final days, the family struggles with the unanswerable questions of why they were chosen--and when it will end.
Long before it led him to the AIDS virus, hemophilia introduced Ellis to the medical system: The hereditary condition makes his blood unable to clot properly, and even a mild bruise or scrape could lead to dangerous bleeding and hospital stays of from two to eight weeks.
“I was practically raised by nurses and doctors,” Ellis said.
In the late 1970s, though, he began taking the Factor 8 clotting agent.
For the first time in their lives, Ellis and his brothers, Larry and Joe, could live almost normal lives. Once bleeding started, they could inject themselves with the product--which was made from donated blood--to stop bleeding without the need for a transfusion.
It was a second chance at life, Ellis said.
But since then, he and thousands of other hemophiliacs have learned the terrible cost of the treatments: Blood products tainted with the AIDS virus slipped into blood banks before the disease was well known and reliable tests developed to screen for it.
According to the National Hemophilia Foundation, 50% of the nation’s 20,000 hemophiliacs are infected with HIV or have developed AIDS.
In 1985, on the day before he turned 30 years old, Ellis became the first of the three brothers to discover he had HIV.
“Devastating,” he said. “I was worried, my son was only 2 years old at the time. I had hoped I hadn’t passed it along to my wife.”
The progression of infection--first one brother and then the next, and the next--nearly crushed their parents, Pauline and Harry Ellis.
A truck accident in 1977 had already taken their oldest son, Harry Jr., the only one who did not have hemophilia.
Joe died in 1987 of AIDS-related complications; Larry in 1989. The next year, Mark Ellis found out that he had developed full-blown AIDS.
Mark Ellis and his wife, Barbara, filed suit in 1985 against a manufacturer of Factor 8, but were unable to link his illness directly to the company, and eventually settled for an undisclosed sum.
Whatever the amount was, Barbara said it would never be enough.
“You can’t put a price tag on your husband’s life,” she said. “No amount of money is going to replace (him).”
Ellis has been unable to work because of the disease. He can walk slowly, but has frequent bouts of pneumonia and is very weak.
Barbara and their sons, Michael, 13, and Isreal, 10, have tested negative for the AIDS virus, but baseball and other typical father-son activities are out of the question.
They get by, somehow.
There are no shortage of strains on their 13-year marriage. Ellis admits he is bitter, and wonders why he was chosen for the disease. Barbara doesn’t question what she believes is God’s will.
“There’s a reason for it and maybe someday I’ll know what that reason is,” she said.
Barbara is matter-of-fact as she talks about much of the struggle. But there are tender spots, including the forced decision to quit her job so the family would be poor enough to qualify for Medicare and Medicaid.
She cries talking about it, just as she did the first time she stood in a grocery line with food stamps.
“People look at you strange and they don’t know your situation.”
Once at the grocery, a woman in front of her looked at Barbara’s diamond engagement ring and said she should sell that instead of using food stamps.
“I couldn’t even defend myself to the lady,” she said, biting her lip to keep from crying.