A New Dream: To Help
PWAs Who Are Alone
April 1987 ■ Q-Notes PAGE 5
■ jWjsisss
Fiom Pievious Page
Mary and Bill beseech me to tell other
parents not to try to tace this crisis alone.
"Bobby has given us strength, but we
need so much more," Mary said. "We
need other people to talk to — other
people going through the same thing."
Bill agreed: "I think other people may
need us more than we need them, at
least just as much."
Mary shared her dream with me — to
help care tor AIDS patients who have no
families to support them. "It's something
1 want to do when when Bobby is gone."
She admits she isn't sure she will hove
the courage. Somehow, 1 think she will.
When Bobby was diagnosed with
AIDS, a minister who happened to be in
the hospital at the time came to comfort
Mary as she sat in the lounge and cried.
"1 told him it's such a difficult thing —
not the AIDS or even the reaction of
people to it. What bothers me is that my
child is dying and there is nothing I or
anyone else can do about it."
Bill echoes her frustration: "There is no
amount of money — you can be the
wealthiest person in the world, and that
money can't help if you have a son who
has AIDS."
How do they cope with that helpless
ness?
"I hope and pray," Mary said. "We
pray that the scientists and the chemists
and the research people come up with
something." Bobby missed by one slot a
chance at the AZT trials that started last
May. The drug has since been ap
proved by the FDA and he now receives
the costly medication.
Last Thanksgiving, Bobby, back in
New York, was once again hospitalized.
The drug Pentamamine used to treat
PCP played havoc on his body. After 14
days of treatment, his kidneys and blad
der were not functioning.
"He would pass out every time he sat
up," Mary said. "They decided to do
another spinal tap because they sus
pected these were seizures. I was with
him this time. After a few weeks, they
stopped the Pentamamine. It had
cleared up his lungs completely. Then
we had to get the kidneys functioning
properly, and so he was in the hospital
for another week."
Bill and Bobby's brother Sam came to
New York to help Bobby move back into
his apartment. His pancreas was no lon
ger producing insulin, so he had to
learn to inoculate himself.
Mary returns to her photographs. She
shows me each one.
"There is so much love for him. I love
all my children, including Bobby. All of
the horrible times we have gone
through with him — his suffering so
much, accepting his homosexuality and
him. But he is our special child and his
brother and sisters' special sibling. It's
hard on them all."
Bill and Mary feel Bobby is fortunate
in ways. He maintains his own apart
ment with financial assistance from So
cial Security disability, Medicaid, pri
vate insurance and the New York City
Department of Social Services (DSS).
Bill asked me if I would like to see a
videotape Bobby made in New York for
DSS — his way of reaching out to other
AIDS patients.
We watched in silence. I sow in his
gcmnt face a boyish smile. I saw his
father's eyes and heard his mother's
laugh. I felt numb as I drove home that
afternoon, scarcely noticing the cold,
monotonous winter rain.
■ ■ ■
AUTHOR'S NOTE: Bobby still lives in
his New York apartment. He has agreed
to meet with me so we may report his
personal postscript to this series in next
month’s Q-Notes.
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