LIST...CHECKING IT TWICE
5 December 2002
was thinking about Priscilla last night. I met my friends Sam and Coco from Breaking
Barriers and I asked them how she was doing. I haven't seen her in several months.
Two years ago, at this time, we never dreamed she'd live this long. But miracles
happen, and Priscilla is a miracle. The drugs are working. Her passion for making sure
that her mother's last days are good ones has energized her. Sam tells me she even has a
car now and doesn't need Breaking Barriers' help with transportation any more. I have to
get over to see her before Christmas.
Two years ago she was dying and she was saddled with her five
grandchildren when her daughter was arrested. The Sacramento AIDS Foundation was on its
last legs and was going to be unable to give much help to people with HIV and AIDS. I
mentioned it in passing here in my journal, because I was so frustrated trying to find
help for her. It never occured to me to ask anybody to donate any money for her, but
people who had been reading about her in this journal responded in such overwhelming ways,
with both money and gifts, that I was able to give her $1,000 in food, Christmas gifts,
and cash. She was flabbergasted that people even cared. She said it gave her hope.
Last year, she was in similar circumstances, and the AIDS foundation
had folded completely, so the only Christmas she and her grandchildren (with whom she was
saddled again) had came as a result of our family and the readers of this journal. It was
one of the miracles of the Internet.
I'm very pleased to say that Priscilla is doing OK this year. I will
probably bring her a Christmas basket, but there is no crisis and I am absolutely thrilled
for her. It's probably just that I'm working in an office and not out in the field,
because I know there is great need out there, but none has hit me personally.
However, I spent time with Dr. G's wife yesterday. This is a woman
with a heart as big as Texas and Alaska combined. Some months ago she read about The
Bennett Family, John and Alicia and their three children, Ciara, Hunter and Tommy. The
three children (Ciara is about 6, Hunter is 4 and Tommy is 3) are affected with Sanfilippo
syndrome, a degenerative genetic disorder that is usually fatal before the teens. The
Bennetts were trying to get their children into an experimental treatment program and
their insurance company (Kaiser) was refusing to pay for the expensive treatments.
Dr. G's wife was so affected by the story that she decided to take
on the case and find a way to get the kids' treatment funded. At that time, they knew it
was too late for Ciara and that Hunter was marginal, but they felt Tommy had a chance. She
worked tirelessly getting amazing publicity and in the end, Kaiser relented and agreed to
fund Tommy's treatment, a treatment he is currently undergoing at Duke University and
things are, so far, looking promising. Tommy's mother is keeping a journal, along with photos as
the treatment progresses.
However, while at Duke, they have met a 3 year old named McKenzie, who has a rare form of
leukemia. As Dr. G's wife told me the story of these people she had never met, her eyes
filled with tears. The family has no money, is living at Ronald McDonald House, and the
bone marrow transplants for McKenzie are not going well. The Bennetts, who have just been
begging for money to help their son are now asking people who want to help to send money
to McKenzie instead. I don't know any of these people, but if you are looking for some
worthy cause to contribute to this holiday season, you might want to check out the web
pages for McKenzie and Tommy and see if you feel these are people you'd like to help.
There is so much pain in the world, and it
always seems intensified during the holidays. I was meeting Sam and Coco last night
because the three of us were working the local display of panels from the AIDS quilt. On
the way to the mall where the panels were being displayed, I was listening to MPR, an
interview from Ethiopia, where 10% of the population is infected with the HIV virus, where
8 million children have been orphaned by the disease, and where the people are rejecting
information about the use of condoms because they believe that people in developed
countries are trying to kill them by putting the virus in the condoms and if they use
condoms they will die.
It was so interesting watching the response of holiday
shoppers at the mall. Some of them did stop and look at the panels. But many went out of
their way to look anywhere but at the panels--even into the empty storefront which was
opposite the quilt panels. Sam tried to talk with younger people--the fastest growing
population of new AIDS cases in this country. Some were open to at least listening to her,
but far too many wanted to hear nothing about AIDS, about safe sex, or about how they
could protect themselves.
Is it any wonder that AIDS is once again on the rise--and now among
young straight people, the very group that feels it is immortal. These things happen to
"other people," never to them.
Sometimes there is a chilling contrast between the cheery songs
filling a gaily decorated mall and the reality of the effect of a pandemic standing there
for all to see.
(look at the dates...this hurts to