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5 December 2002

grandma.jpg (77645 bytes)I 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.

quiltdisplay.JPG (55716 bytes)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.

quiltbsa.JPG (47488 bytes)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.

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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.

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(look at the dates...this hurts to see)

Quote of the Day

Let us remember that the Christmas heart is a giving heart, a wide open heart that thinks of others first. The birth of the baby Jesus stands as the most significant event in all history, because it has meant the pouring into a sick world of the healing medicine of love which has transformed all manner of hearts for almost two thousand years... Underneath all the bulging bundles is this beating Christmas heart.

~ George Mathhew Adams

Photo of the Day

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I took this a week or so ago--
whenever we had the full moon



One Year Ago
It's a Dirty Job, but Somebody Has to do It
The patient lies there on a table, her head propped up comfortably on a pillow, her feet cuddled in oven mits over cold chrome stirrups and her legs spread wide apart like a turkey about to be stuffed for Christmas dinner. The doctor has this long condom-covered wand stuck up inside her, and all three of you are watching the movement of her organs.

Two Years Ago
A Ticklish Situation
...when the card came nearly a year ago, I really didn’t know how to respond. It was an anniversary card. And it was a very nice, home-made anniversary card. It was happy and funny and full of love and smiles and congratulations and joy on our anniversary. The problem was that it wasn’t our anniversary. What it was was the anniversary of Paul’s death.

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Created 12/4/02