More than a Number…..

This week the World AIDS conference is being held in Mexico, and the MSM has barely covered. At the same time we learned that the CDC has been manipulating the actual Stats, the “Numbers” on HIV in this Country for the past 5 years.They admit that this has happened. What worries me more than the 10’s of thousands they ignored in their numbers, is that they were willing to lie about HIV, then they most likely also lied about AIDS and the auxillary diseases, such as TB and  STD’S. Heaven forbid that any of us should think that the Government’s  Abstinance Only programs were less than Meaningful or successful.I am allowed my cynicism and my disgust,my worried angst, I took care of hundreds of AIDS patients spanning over 15 years.

AIDS and HIV should not ever be about repainting the Numbers with bright colors, Lives are at stake, of good people, and Lies, deliberately told also can Kill and can also bring back an Era of Shame and Fearmongering about a Disease that needs good care and treatment. I worry that this Administration’s Lies will now reap a new generation of Victims, that at worst may go undocmented  and uncounted and maybe even Invisible, and maybe even ineligible for aid and care.

In the early 1980’s I worked as a nursing student in Baltimore, and while working an Oncology Floor to pay for nursing school  I took care of my first AIDS patients, They were young men who came to our floor rapidly wasted with GI Distress and devastating respiratory infections and died so quickly and myseriously. By the late 1980’s my knowledge had increased and I was working the frontlines of AIDS, it was no longer a mystery….but it was a dangerous Killer. By the Mid 90’s the disease would be manageable with proper treatment and educational advances,but that took time, diligence and vigilant record keeping and medical research.

A Face of AIDS….More Than a Number.

I worked as an AIDS nurse in Seattle in the late 1980’s and one of my favorite patients Rick, became a friend. He was a talented artist, this friend that taught me about Buddhism and how to find my way with it. He was an artist and a poet that had worked and taught Art and English in Asia. I first took care of his partner Steve in 1988-1990, and as I taught him the finer graces of nursing to care for his partner, he taught me so much more. He taught me intricacies of Life even when dying. He was more than a Number, but a life that indeed should have been Counted, both when he had HIV and when he had AIDS. He was one face in so many, one valuable Life.

I first cared for his partner, Steve providing homecare, but Rick was in Charge, and was the Caregiver that had alot to teach. As a caregiver what seemed so simple, he explored with loving attention to details that were medically motivated.

His partner was nauseous alot, so Rick would spend hours figuring out what SMELL made him feel better ( S’MORE’s fresh in the microwave and vanilla mint icecream on the bedside table were some of the best Comfort results). He taught me how to make “Russian Tea” ( Which is Tang and Iced tea powder mixed and served steamy and hot, a heavenly concoction). He explained that a part of Buddhism is science and reading, and putting those into action and having faith that the Universe would help the Healing. I liked how he explained it and that it was not a matter of “Leaving it up to God”. ( Who personally by that point in time I felt had failed miserably, as much as Reagon).

Rick would sit by Steve’s bed and read to him from the I Ching, and Chinese poetry, and from Confuscious, and Teachings of Buddha. He had rituals where he would serve tea and tangerines. He put ginger in the tea.He consulted a Feng Shui expert and they reviewed the horoscopes and rearranged furniture and brought in different colors to help Steve’s comfort , and amazingly it all helped. And Rick would smile and gently leave books out for me about the Feng Shui, Chinese Medicine and Chinese Horoscopes, and “The Barefoot Doctor”.

I took care of AIDS patients in Seattle 1988-1998, and this was quite a feat, for a good part of those years I lived on Capital Hill near many of my patients and my neighbors that were battling the disease as well. And yes, as many of my neighbors became my patients there are also were lessons to learn about boundaries that became blurry and soft. I did Homecare and also worked at a lovely little Hospice that was called Rosehedge. ( and still worked other shifts on the side , including ER and PEDS). ( I had this grand idea that if I could just work alot of different areas- I would never burn out as a nurse).AIDS taught me that Advocacy and Education made a difference, it also taught me that my “Patients” were real People with Real Lives and that their lives were worth fighting for. It as the first time I realized that the Government could play a signifigant role in a Disease, and that could indeed be a good thing or not.

Steve died first in 1990 and in less than two years I got a call that Rick was very sick. And by then we were stll friends, but I took a job at a nursing homecare agency that I knew would take good care of Rick. Rick was shocked to realize that he had AIDS and that he had CMV retinitis.( He had been HIV postive for almost 8 years when he went into AIDS, he took amazing care of himself, even while caring for Steve. ). He called me and said:

” I can’t believe this, I am losing vision every day. It is so odd, it is like the colors are being washed from the sky. You think living in Seattle where it is so grey and rainey , that makes it worse?”

The saddest part was he was still grieving Steve when he got his own bad news, and it spiraled him into a huge depression. He gave up painting- totally. So I would go see him, and so would his friends, and we would all try to figure out what to do. I finally took the Phone number list off his frig and organized a Plan. I called Everyone, all his friends and neighbors, his “Care Chain”. I set a a huge old Value Village Bowl on his front Hall table,called it the” Blessing bowl”, and we all started leaving goodies in the bowl, to help him heal, to help him paint. Handmade playdough beads from my son,silvery gum wrappers, String, a birds nest, copper wire found in the Alley, cards and even tangerines and fig newtons and fortune cookies. And day by day he could not pass the bowl and not be tempted by what gifts were there.

And slowly after many monthes, I arrived one day to find him painting with his head bent close and putting wire and beads on the canvas, and he said.

” I can’t really see clearly, but I can feel the texture, and mostly I can FEEL Again” he lifted his head, and through the paint and glue and woven into his hair and face, I could see a wide infectious smile.

And for the next few monthes I would always make him my last stop of the day. We would paint and weave, make paper with a dilapitated blender, and laugh and listen to music. And yes in many ways , I think that it was Grand Conspiracy that his friends and I pulled off. We were able to get Rick to paint again.

If you come to my home, I have many of Rick’s greatest paintings.
I have packed them over and over on my precarious journey cross country.
( and even ones we painted together, that I know in my heart are priceless)
I look at Them and they are not Just Art :

They are laughter at glue spilled on ugly old linoleum,
They are coconut shavings and melon seeds stuck on my clogs,
They are the the 1962 Hamilton Blender that vomited home-made paper on his kitchen ceiling,
They are homemade Minestrone Soup and Opera on Fridays,
They are the 16lb. bowling ball that “fell” out of the 3rd floor window.
They are courage against angst,
They are watching Willow 26 times,
They are Winter in Seattle, without the Grey.
They are Chili Cookoffs and “Friends& Sienfeld”.
They are sandalwood Incense and tangerines,
They are Light in the Darkest of Darkest Shadows,
They are Chinese New Year…and Eternal Hope.

~~~~~~~~~~~~~~~

This Post was originally written as “Chinese New Year”, in 2006 on Watergate Summer, it has been re-written in various forms. It is always dedicated to Rick…..Because he taught me more about AIDS and Life than I could have ever imagined.