On my birthday this year, at the AIDS International Conference in Washington D.C., there was a press release saying that two more patients treated early with antiretrovirals, they had been cured. Cured. Of HIV/AIDS. Incredible.
Of course it wasn't phrased like that. What it said (and you can see for yourself here: http://www.aids2012.org/WebContent/File/AIDS2012_Media_Release_HIV_Cure_26_July_2012_EN.pdf ) was that two French adults who had been treated with the antiretrovirals until their viral load of HIV was in the "negative" range, and who then stopped taking the meds, their tested HIV cells remained in the "negative" range for six years so far. But it was released as you can see under the banner of the "HIV Cure" initiative, and it was for these folks as much of a cure as any cancer patient gets--that is, an indefinite remission. Without the sometimes--physically-brutal and always-mind-consuming duty of taking daily antiretrovirals.
The key was to catch the infection early, when the relative viral load was lighter, and there weren't yet secondary medical conditions. Which is why everyone who has any risk at all of contacting the virus is advised to be tested every six months. That test is not a death sentence. It is your chance for a long life.
Imagine if we said this about cancer: Get a blood test every six months, and if we find anything we can "cure" it. The line would be out the door. But HIV/AIDS isn't like cancer. It never has been.
Twenty-five years ago the AIDS Memorial Quilt began, started by Cleve Jones in San Francisco as a way to memorialize and personalize rather than demonize those who had died of AIDS. It hasn't been possible to display the whole quilt for years given how large it's grown, but they did it this year in Washington, all 1.4 million square feet of it. I put my name in and this is the first of many "Lisa's" on the quilt, a five year old girl. This fits in a way, since I was a foster parent during those years when it was almost an obsession within foster parent groups about whether to take in HIV-positive children, often requiring care because their mothers had died or were disabled. It often came down to the "toothbrush" issue--what if another child in the home picked up and used their toothbrush? But the real issue was: could you watch a child die in your home? Because there were grueling chemo regimines, but there was no cure. Everyone died.
I had my first child the year the Quilt was first displayed, and I remember thinking that I had brought her into a scarier world than the one I'd been born into. I had my second child the year that "Lisa" above died. Our third and fourth kids were born in 1990, and contrary to what I expected, all four have grown up in a world where they've been told to have "Safe Sex" but otherwise not to worry nearly as much as I supposed they would have to. There are treatments now. There are possible cures. We are an optimistic land. We think we've turned the bend.
But more than a million Americans have contracted HIV/AIDS, and more than half of them have died; and the global totals are far higher. The tragedy of it is epic, and hard to convey. The quilt tries. So do authors. This week I read Tell the Wolves I'm Home by Carol Rifka Brunt and I loved it. It's told in the first-person, a 14-year-old girl named June whose beloved uncle is dying of AIDS. It takes place 25 years ago, in 1987, with all the cultural references to that time that those of us who were teenagers or adults will remember, and the hopelessness of those with AIDS and their loved ones. A treatment was said to be six months away. It's not in time for her uncle Finn, or his partner Toby, who is kept in the shadows by Finn so he can continue to have a relationship with his family until the end. Toby only comes to June in desperation, for comfort, and for company after Finn dies, and their friendship becomes the odd and funny core of the book. She has to see him in secret. It's sad, and it's uplifting, and it's an amazing book. It made me miss love and miss Finn too, an artist who was full of life and talent and good humor and grace and forgiveness and love. And long as June lives, she'll never really get over it. That's what tragedies are.
Sunday, September 30, 2012
Sunday, September 23, 2012
Brain Age
A related term was "Brain Fade," which originally came from the "brake fade" term in racing where if you ride them too long and too hard they give out. Brain Fade would be if you were concentrating on a report or a project for ten hours and by the end you could barely remember what it's about, or cramming for finals. Interesting, but since I'm not capable right now of this kind of concentration and effort, it doesn't apply either.
"Blond Moments" are of course insulting to the 10% or so of Americans born with that hair color (less so, I think, to those who dye their hair that color and then act the part) because it is some combination of "stupid" and "naive," rather than forgetful. "Senior Moments" are more apt, and forgiving--mental glitches like forgetting your PIN number and pouring fabric softener into the detergent spot-- and apparently made just for my age. It's not sexy, but it's true. I just have more than my share, making up for all those incredibly-mentally-sharp 48-year-olds out there. I imagine that that just like showing off your toned body on the beach, they can wrap up the award for cleverest at any social gathering with their witty quips and gimlet eye. That is, until they start drinking and their brain slows right down to my pace. Ah alcohol, the intelligence equalizer.
So I pulled out my old DS that came with a Brain Age package and tested where I was at. Brain Age, for those who did NOT buy this when you turned 40 for the express purpose of preserving and enhancing your memory and mental flexibility to ward off senility as long as possible, is a puzzle game. It has no proven scientific basis, and though having some form of mental challenge does in fact seem to hold off dementia (once you are over 70), you can also get this from doing crosswords, or reading and writing, or Sudoku, or yoga, or conversation, or travel, and all of those seem more interesting. Still, being a geek I found the game fun (the first few hundred times) and I played it for a few years. My last score was 35 years (when I was 45). Today it was 72.
This fits with my mother's sense of my brain working about as well as hers does. She turned 71 this week and looks fabulous, by the way. There's hope for me in that department at least. And she's always been smart so she won't be surprised to have been right again here. The way I search for words, and objects, and make silly, stupid mistakes and errors in judgement is as familiar to her as it is frustrating. You can almost feel the mental plaque forming up there; the brain refuses to repel aging any more than the rest of the body does. We empathize with each other.
Except I'm not supposed to be there yet, which makes me wonder why I it happened to me. Anyone who has something bad happen to them has to. My gorgeous sister-in-law this week who needed to have a prophylactic double-mastectomy because of the terrifying state of her breast tissue. My father who needed his left hip replaced last week (though his right is perfectly fine, a mystery no one seems to be able to answer to my satisfaction). My son, who was beaten up and found out this week his ACL is torn and needs reconstructive surgery. Anyone.
The book that helped me more than any other at grappling with these thoughts, and why you might have some mental and/or physical consequences from living a stressful life, is The Joy of Burnout. It helped me when I had actual burnout from work a few years ago, and since then I really have followed her suggestions on making the way I live and work more personally fulfilling and balanced. They've improved my life vastly. She also talks about how people with a strong work ethic feel shameful about burnout, or about failure to work or produce at the level they always have, which I strongly identify with. People ask me almost daily if I'm back to work yet. I've tried to steer the question off with a faraway look in my eye, like I'm not paying enough attention, just to avoid answering. It's too painful to discuss why or how I'm still struggling.
But that's the real revelation in the book. She says from her experience there are almost always positives to be gained from such a struggle, and the place you come out is different, and better, than you would have expected. That happened with the burnout, and I have to imagine it will happen with this. Already, I suspect it has--I've found a yoga class nearby on the beach, I've joined a writer's group in New Haven and I'm trying to take a class on writing romance. Not sure if these things are better in any way than being able to shop for groceries or drive trouble-free or remember all the steps to baking a cake, but they're good and they're a lot better than the alternative of focusing on what I can't do well. They're gifts, that you get for something hard happening to you. And for this, for helping me find the upside to head trauma, I thank her.
Sunday, September 16, 2012
Yalta to Istanbul, and Beyond
Yalta was our last stop in Ukraine, the setting for the second peace conference at the tail end of World War II though it wasn't about peace so much (since Stalin, Churchill and Roosevelt were all on the same side) but about divvying up the land controlled by the Axis powers and determining German reparations. It was remarkably cozy, with each delegation having a separate palace to spread out in; Roosevelt's was the Livadia Palace, a rarely-used summer home of Czar Nikolas II before his family, the Romanov's, were killed during the Russian Revolution. We toured the palace and heard various takes on the differences between the leaders. Churchill, and some of Roosevelt's advisers, didn't trust Stalin not to grab control of Eastern Europe as a "buffer zone" against future German aggression but FDR and Stalin got on well and Roosevelt refused to believe that Stalin would abuse their trust.
Ah, hindsight. The palace itself was quite lovely, of course, as was the "pocket palace" called the Swallow's Nest, which a hundred years old and a hundred thirty feet high, perched on less stone than there is building Swallow's Nest close-up . It is 66 x33 feet, designed to hold three levels of bedrooms up the tower, and a main foyer, but it has been used as a restaurant for many years. It's currently closed for what looks like needed shore-ups. And if they need a new location it would fit on my Cape-sized lot."I just have a hunch that Stalin is not that kind of a man. ... and I think that if I give him everything I possibly can and ask for nothing from him in return, noblesse oblige, he won't try to annex anything and will work with me for a world of democracy and peace." Franklin Roosevelt, 1943
Yalta was also the warm-climate retreat for Anton Chekov once he contracted TB in his thirties, and thus the the setting for Jessica's unauthorized excursions into the closed Chekov house and closed Chekov Theatre. Both ended with stories that she is best able to tell (or show, apparently there is a video on her iPhone). What I can say is that Yalta takes great pride in Chekov being there for his last few years, and writing the story the Lady with the Dog, less stream of consciousness than The Seagull and earlier works but still, to my mind, depressing. I read romance novels, on the ship, while Jess read Chekov on stage and communed with his spirit. If she directs any of his plays they'll be great. If she directs a movie about his life, he'll be Johnny Depp.
Love Statue Batumi, Georgia |
Once we had our last souveniers from our trip we needed to retreat to the ship to find our peace.
It was right there, waiting.
Sunday, September 9, 2012
The Black Sea and Me
Lisa and Jessie in Athens |
Gallipoli |
Inner streets of Athens |
The Acropolis, in disrepair |
The boat we traveled on, the Oceania Regatta, was luxe and delicious, and educational if you could sit through the lectures by the professors on board. I couldn't, given my attention span these days, but my father and Jessie did, and learned about harems, vodka, Stalin and the various ports of call. I watched them on the room's onboard TV station, a geek as well, and learned a lot, which I promptly forgot because I have no pictures to jar my memory. So, what I'll write about is what I can see again on Snapfish. First, Nessebur, Bulgaria, lovelier than it sounds, all fishing boats and postcards and village squares and rosewater. Jessie and my father went on a tour, drank some stiff local stuff, met the mayor, and ate in a local residents' home. I went to the town center, watched kids swirl around in a bunch of juiced-up motorized Tonka trucks rented by the minute, wrote out a postcard home, and went through the motions of converting dollars to euros to Bulgarian Lev. Two of them, so I could send the postcard. Done.
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