Crixi on a cure for AIDS

I posted Saturday about a promising technique developed by German researchers which actually snips the HIV virus from cells, thus curing the cells of infection. I connected to that research, from Deutsche Welle, here.

In response to that post, Mr. Crixi Van Cheek responded with a comment that touched me. I have fallen in love with Mr. Crixi over the last year as the result of his comments on Joe.My.God. When he writes, I listen up, so here is Crixi on what he might do when the cure for AIDS gets here.

My Dear Lynette...

At first we think how wonderful it will be. A sort of VE day over AIDS. What would we call it? In 1990 "Longtime Companion" an Oscar nominated film about AIDS, portrayed the end by having us re-united with all our loved ones on the beach on Fire Island. Sadly, nearly everyone in the film is now dead. Including my bright eyed friend Frankie.

I sometimes wonder myself, what would it be like? I got the virus on 11/26/89. I found out, and got sick April Fool's Day, 1991. Now, all these years later, after having watched way too many people breath their last I find I have very few tears left, but a reservoir of rage.

When I was in school I saw news reels from the end of WWII showing survivors of the Nazi Death Camps being liberated. I used to wonder why they just didn't run for the open gates the minute they were freed. They sort of scraggled towards their liberators.

They were wide eyed and skeptical as they were let out of that hell. Of course the cameras focused on the weakest, the rail thin "walking corpses". But in the background and to the sides were the people that had arrived at the camps later, who were still relatively healthy. What were they to feel? Are they less relieved since they have suffered for a shorter period of time? Do they stifle their joy in the presence of those who have suffered unimaginable pain and loss?

And so it may be when they announce a cure for AIDS. Will I be entitled to joy? Or will I feel too much guilt for having been one of the survivors? How many more accomplished people died before me? My first love, a handsome young doctor, such a waste they all said. But me, just a blue collar kind of guy, why me, why did I make it?

Yes, yes, the Mary Ann Williamson profiteers will all have reasons for me to 'embrace' my feelings and live in some spirit, some moment. But fuck them all, they just wrote books and got rich while our bowels rotted.

Will I walk out of the camp, or will I run? Do I have any run left in me? Will I want to go back and scoop up the ashes of my friends or will I not look back and wash that whole dirty virus off me in a marathon shower?

What will I do when there is a cure? Will the Glaxos and Squibbies mourn their lost protease profits as much as we mourn our dead? Or, will we meet at the corner of Gay St. and Christopher and as our friend Joe.My.God would say: "They tried to kill us, they didn't, let's dance"?

Can you imagine such a thing? And is it even possible to experience such a glorious breakthrough ~ a cure for this dreadful plague ~ without mourning loved ones lost? All of my Houston friends are dead, my band of sweet gay boys who introduced me to the bars, to their lives, who I loved absolutely and who loved me right back. I don't think I could revel in the joyful news of a cure without again mourning the loss of those precious men. We were just babies, all of us, so very young and innocent. To think of them older is impossible. I will always remember them on the dance floor, just as Crixi has said, in movement and life and joy and love. A cure will come. I know it.

cure for AIDS in 10 years?

Joachim Hauber of the Heinrich Pette Institute for Experimental Virology and Immunology in Hamburg, Germany, is guardedly optimistic.

"We have rid the cells of the virus," Hauber said on Thursday. "No one else has done this before." He called it "a breakthrough in bio-technology."

Hauber said it was his "cautious" hope that a cure for AIDS could be found within 10 years.

The new procedure actually removes the virus from the cells, leaving them healthy again. Exciting stuff. Requires work with stem cells. From Germany's Deutsche Welle.

Update: After I posted this, Brion from New Zealand wrote with the text of an address he's giving at a fundraiser in NZ. I thought it was appropriate to add his words here, as he speaks from the view of being a person living with HIV and having experienced the plague and so many deaths:

"There are any number of reasons why peer support groups, for any number of conditions, medical or otherwise, are the most useful and multi accessed, but also the most underfunded.

One of the purposes of running a peer support group such as 'POZ PLUS' is to increase the options available to positive people, whatever their gender, age , race or sexuality.

Having a condition such as Hiv can seriously limit some of your options. Not everyone with Hiv is able to continue in full time employment. Even part time employment, when suitable and available, doesn't really help to alter the equation.

With the activities we already operate, the most important the monthly luncheons, we hope to involve our members with some of the options they may no longer have the ability to access.

There's a comment I read recently on the internet that has a certain resonance for some of us who have survived fifteen or more years with HIV. When we were told back in the 1980's that we would be "lucky" to live another 10 - 15 years and there are some now past the twenty and mid -twenties mark, we might feel justified in asking for our money back! Certainly the pharmaceuticals that began to become available in
the late 80's and early 90's have made enormous changes.

Some of us can remember those 1980's. It sometimes felt like being at a dinner party when every now and then someone left the table and never returned. Without wishing to sound like it's over egging the custard, there are some of us who look back on those times and mourn the loss of so many of our friends, lovers, companions. We perhaps feel a certain responsibility, perhaps a little guilt, that we survived when so many didn't. I know that for me and some of my colleagues, there is this inner need to do something useful to commemorate those who are no longer with us........."

Maybe in 10 years, more or less, there really will be a cure for this nightmare of a disease. Thanks Brion!!

circle of love

Michael won't look at me. His dark eyes scrunch shut above the white mask and he tenses as I approach. A few minutes and a slit of eye, then a turning of the head. He's furious with me, still, two weeks after I rescued him from certain death and confined him to this lonely room where he must stay until the tuberculosis wracking his lungs is no longer contagious, while he's pumped full of drugs to combat the virus that's destroying him. He hates the mask, he hates the gown, he hates me and this room and he wants his mother and she doesn't want him.

I am angry too. I am angry with this child's mother, a woman dying of AIDS and tuberculosis who refused to give her son the meds he needed to survive. When I took him from her care, it had been 14 months since he'd seen a doctor. His TB was active and he coughed constantly and his T-cells were nonexistent and his viral count sky high. He is five years old and he has AIDS. She says the meds make him feel bad and they do. That's clear in this tiny tiled room on the second floor of a crappy hospital, the only place in the state that would have anything to do with this little boy. Now that he's dosed up, he's lethargic and his tummy hurts and he sleeps all the time.

He doesn't know it, but his mother's in the hospital too. She is refusing treatment and hospice is giving her comfort and care and attention. It's more than her son is getting. I can't be with him all day and the hospital staff can't spare anyone to sit with him all day and this little boy's soul, it seems, is shriveling while his physical health improves and he's watched, but not touched, by the camera in the corner of his room.

I am at my office late that same afternoon when the call comes in from Lisa. That's not her real name; her real name's unique enough that I won't share it here and unique enough that that I am reminded, when I hear it, of a 17 year old permanent foster care child I met in 1989. She was losing her care, her foster parent booting her the day she turned 18. She was an A student, a soft-spoken child who wanted to go to college, to learn to help people as she'd been helped. I spent half a summer with her as I did my practicum in child welfare. We tried to find pre-college housing so she'd have someplace to go. We got her terrible underbite fixed and more work done on her cleft palate. She told me that her mother never wanted her and abandoned her over and over until the state finally kept her. The foster mother's abandonment was just another verse in the tragic song of her life.

I ask this woman on the phone if she's the Lisa I knew from 1989 and she laughs and says yes. She's a social worker now, just finished with her MSW and back from a trip to Africa where she spent two months trying to trace her ancestors. She is full of joy and pride and deservedly so. She tells me she heard about Michael and then she utters words I never imagined hearing: I want him, I want to keep him. I love that child.

Lisa told me that she had provided respite care for Michael through a local agency, then directly, while his mother was in the hospital or was tired of caring for him. She knows about the AIDS, about the TB, and she wants him. Adding to this impossibly good news, she assures me she is an approved foster parent, another gift, as the process of approval takes months. She wants, immediately, to be allowed to see him. I immediately arrange that.

A week later, I am back in Michael's room. Lisa is there. He looks directly at me and smiles. I can see his lips turning up behind the mask and I can see the sparkle in his eyes, the lifting of their corners as the invisible grin rearranges his face. We all look at one another in our hospital gowns with our white masks and we smile and our eyes connect and I feel as if I can exhale for the first time since I met this tiny little boy.

He's working a puzzle with Lisa and I watch them, seeing two children and a miracle in progress. One is a grown up child, a fine young woman, and the other a little boy, desperately ill, but smiling. One is evidence of what hard work and intelligence and resiliency and a little help and a boatload of compassion from a host of social workers can do, and the other is evidence of the immeasurably powerful effect of love.

It's a little trite and certainly a cliche, but that doesn't take away the truth of it: love given freely to others can expand in a huge ever-widening circle, like concentric rings surrounding a single drop of rain in the center of an ocean. One tiny act of love happens and then the waves of it expand and go on and on and on touching others in ways we'll never know. A drop of love, of kindness, compassion, it seems like nothing; yet it was enough to carry one child through a tragic life and into adulthood, buoyed on the tiny waves of love from this social worker and that one, from a teacher, a minister, a therapist, a doctor, even from a summer practicum student. With nothing but rejection from her family, from the pseudo-parent hired by the state, she still thrived on drops, on waves, on the buoyancy and solidity of caring and compassion. In doing so, she preserved her own goodness and the hope that exists in all of us unless it's stamped out by indifference.

She saved herself and turned right around and saved this little boy. Michael is 10 now and he's got T-cells and the TB's gone. He goes to school and he has friends and he has the kind of life every child should have. Five years of neglect and lack and now five years of love and the kind of cherishing that heals and nourishes body and soul. I don't know if one can entirely make up for the other, but looking at Michael's eyes, at his strong young body, at the way he is with Lisa, I can believe.

AIDS and bill clinton and crixi

In response to Joe's post on Bill Clinton's success in raising funds to provide low cost AIDS drugs to 3d world countries, one of my favorite JMG commenters, Crixi van Cheek, responded with this:

It was the Thursday before Election Day 1992. I had dragged my tired wasting ass onto a PATH train to go over to Jersey City Hall. Bill Clinton, it was rumored, was going to give a speach specifically on AIDS! No other candidate, and in fact, no President had even said the word AIDS. Except for GHW Bush and that lizard in pearls, who referred to "AIDS Babies, the truly innocent victims" as if to infer the rest of us were somehow guilty. Anyhoo...there I was, anxious for some hope, any hope. I wore a long borrowed trench coat, cuz the damn IV I had came with a horrendous over the shoulder pump. I chunky, happy girl of the kind that naturally can identify a queer in need such as I was, befriended me and moved me to the front of the rope line.

Turns out the chunky girl was some sort of State Assemby person. But there we stood, the both of us, tears running down our eyes dumbfounded that this man stood there for a good long time and spoke about his personal losses to the disease and his commitment to stopping AIDS. Not only did he actually SAY the word AIDS, he had personal experience. His friends had died too. He had made deathbed promises to them. He had some of the same experiences I had.

At the end of the speach, there was a rope line of handshakes and thank you's....the cameras were turned away at his request, since he recognized that the stigma of AIDS was still a threat to those of us in the audience struggling with HIV. As he was shaking the hand of a woman to my right he looked at the campaign pins I put on the lapel of that borrowed trench coat.

One said "Lesbians and Gays for Clinton/Gore" the other "Veterans for Clinton" . Clinton, eying them both, said "I am counting on your Votes" plural addressing both issues. I responded with " Governor, you have my vote, but I am afraid it might be the last vote I cast for a president, I have AIDS." He stopped directly in front of me, he gently nudged and intrusive camera away, he held my hand in both of his massive mits and looked me directly in the eyes and said " Let me make myself clear, if you give me your vote on Tuesday I will do everything in my power to make sure you are here for my second term and beyond. You have my word."

The very fact that I am typing this comment in 2007 with a couple a hundred T-Cells compliments of a government subsidized medical program that restored my health during his administration is testiment to the fact that he kept his word. He will forever have my gratitude, not only for the treatments that would never have come to be had he not been elected, but for the simple kindness he expressed in under 30 seconds. He may be flawed, but he is a great man nonetheless.

Crixi Van Cheek | 05.25.07 - 11:16 am | #

Crixi's words broke the gloomy cloud I've been under with tears that haven't stopped yet. I will always love Bill Clinton for his humanity and for his compassion; he is a decent human being, flawed like the rest of us, but at the core, a good man. And I love my mysterious Crixi to pieces.