Sunday, September 30, 2012

Twenty-Five Years

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: ) 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 23, 2012

Brain Age

I originally titled this "Flaking" because I am aware that I am forgetting things a lot and it can get annoying for all involved.  But when I looked the term up in Urban Dictionary, it is a wholly derogatory term meaning someone who says they're going to do something and you're relying on them and they let you down.  Though forgetting is assumed, it is mostly seen as a character flaw, as someone who is undependable.  This is not me.  Still, I had hours of neuropsych testing this week to figure out the parameters of my post-concussive syndrome and I still think this is the most likely diagnosis, especially when I had to list all the ways I could remember that I was still messing up.  

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.   
"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
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.  

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.

Sochi, our one stop in Russia, was comparably less interesting, though still beautiful.  The port was perfect, not a freighter in sight, and the town picturesque, though largely unprepared for the Olympics coming their way in a year or two. The Winter Olympics, to be clear--though this is a summer resort, the winter competitions will be held in surrounding mountains, miles outside the town.  Still, it may be tricky; Putin came in for a visit while we were there and his helicopter and security snarled traffic all around us.  Our tour guide told us he likes to put on plays with his friends during his summer vacation.  At the National Theatre, which was closed to the regular ballet company for the week as a result.  Such a card, that one.  We also saw folk dancing (lots of yipping), a tea plantation, and a lot of their immigration officials; Sochi was the only port we stopped at where you needed a tour guide or a visa to get off the boat.  We were inspected both coming off and onto the boat.  We were that fascinating. 

Batumi was our only stop in Georgia, full of vigor and construction and art and food, and Roman ruins (the ancient walled town of Adjara).  Reportedly St. Mattias was buried in the still-being-excavated site, and the day we were there an orchestra was practicing for a fundraiser under a big white tent.  We were fed white pizza at one stop, and wine, and the strangest sodas I've ever tasted, tarragon lemonade and pear lemonade.  Residents were proud of their Alphabet tower, still unfinished and touting the three different alphabets, influenced by everyone from the Armenians to the Greeks,in the Georgian language.  One is more modern and most widely used, which is good because each requires it's own keyboard.  We also saw a statue (actually a square) to Medea and the golden fleece, and to lovers (below).    From one direction it looks like one person; from another it's two, very beautiful.

Love Statue
Batumi, Georgia
One of our Turkey stops was cancelled due to bad weather, and this was related to a vicious bout of seasickness that befell me but Jessica or my father, despite my motion sickness patch and eventually medical treatment.  Enough said (and remembered) about that.  

But the two stops we did have were both great.  Trabzon is a pretty workaday city, surrounded by plain homes built up the sides of hills.  The most impressive of these is the Trabzon Monastery at Sumela.  The road to get here is a hike so we came here by bus, and then taxi, and then foot up many stairs and some remarkably reckless trails.  Many were felled in their attempts, sitting on the edges of the trail or stopped at a turn in the road, stymied.  But so worth it:  4000 feet above sea level, built at the site of a Virgin Mary sighting in a cave, if you can't be spiritual here you are a goner.  

We saw an ancient church in Trabzon, Hagia Sophia (Saint Sophia), converted like many to mosques for centuries before tracing back the original architecture and frescoes.  But this didn't compare to the one we saw in Istanbul, next to the Blue Mosque, both huge tourist attractions and rightfully so; and hard to find peace within.  You'd have nearly as good luck at the Grand Bazaar, where there were repeats every few stalls, tee shirts and then leather goods and then jewelry and then tea, people haggling everywhere, goods and money flying.  With thousands of shops, one after another, the place is crowded, and fascinating, and as promised by others who had been there who we met on the ship, where nearly anything can be found.       Not the fist-sized diamonds and emeralds we saw on display at the Toptaki Palace (along with harem pants like you would not believe), but nice mirrored pens, and teas and tees.  Enough, and we were ready to go home.  

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
My sister and I went on a cruise with our father around the Black Sea because he'd always been curious about it and he asked us to go.  It's been the hub of a lot of history, from the bloody battles at Gallipoli  to the peace accord at Yalta, and this likely fueled his interest, but when I asked he said he'd done a soft shoe shuffle in grade school to "Istanbul, not Constantinople" and his images of the place had stayed with him, one of those beacons that calls to you.  So we went, and it was amazing.

Living all my life in a country with water lapping at three sides, in states with coast carved across and through, I can see why there's been fighting for access to water on this border between Europe and Asia for millennia. Each country we visited recited the list of who had conquered them, from the Romans to the Byzantines, the Ottomans to the Mongols; and, more rarely, those they had resisted.  In modern times, the Soviet bloc used to control the entire European side of the Black Sea, protecting their warm-water ports with the Black Sea Fleet that could pour into the Mediterranean in a day.  In World War I  the battles at Gallipoli raged after the Ottoman Empire came into the war on the Axis side (reportedly because Germany offered one million dollars more than the Allies) and tried to cut off this access.

Today, though, there are six countries that border the sea, and we saw them all.  There's tension between the borders; a skirmish broke out between Russia and Georgia while we were there.  Russia does appear to be looming especially heavily over that country, more so than Ukraine.  On this side of the Atlantic many of us think of Russia as relatively contained these days; I'm not sure this is true.  Turkey was also flooded at its Southern end by Syrian refugees every day, and Turks we met predicted the Syrian government would fall within the month.  Falling governments are also a foreign concept to Americans; here they are real and serious, and common.  My mother was far more concerned about what was happening between Syria and Turkey than were the Turks that I talked to.

Inner streets of Athens
The Acropolis, in disrepair
But politics was a topic most of all in Greece, where our trip started in Athens.  It was still summer, brutally hot, and most of the city residents were away in the islands for vacation or a return to their family homes so the city was almost vacant, hollowed out except for a few tourists and resentful people who couldn't get away.  Our taxi driver was one; he said he used to be able to get two months off for summer vacation and now he's lucky if he can get two weeks.  Hmm.  Discussing the dire financial straits of the country, my father asked about their national pride in tax evasion, and whether he paid taxes himself.  He said he would, whole-heartedly, if it would make a difference.  So.  The place was a mess, graffiti eveywhere, roads all torn up, every other storefront out of business, but the Acropolis was open and we hiked up with pleasure (and adventure, as we didn't have euros to get in but Jessie used charm and wiles to find us some), then down through the pretty central blocks of the city before eating at a harborside restaurant that gave new meaning to al fresco dining; there were fish nearly nibbling at our feet.

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.

Though I repeated this everyday in every port, not one of my letters or postcards have made their way home.  If not a meaningless exercise, perhaps it was one in math; every country had a different currency.  I brought bits and pieces of each home to my daughter Lizzy and she was thrilled.  The one exception was Constanta, Romania.   There are some deep local prejudices against the Romanians; when I thought my hairstylist on the boat, Radmilla, was Romanian she was horrified.  "Do I look like a Romanian?  I'm a Serb!" she hissed, and the knot-pulling intensified.  I kind of understand her point; I couldn't breathe the air in Constanta without wheezing and had to stay below decks for the day.  While all the ports were busy in one way or another, Constanta was heavy industry, the ninth busiest cargo port in Europe, though they said it was fourth.  It led to an oily, coaly smell in the air, acrid, and so no postcards were sent and no currency saved.  But pictures were taken, especially when Jessie went to Bucharest.  These pictures are mine, the best and worse views from inside the boat.  

Odessa was next, and stunning.  My husband Mark and I went to Europe for our honeymoon, Innsbruk, and though we tried and tried to get to Vienna as well, the snow was thick in January and we were blocked by it on every effort.  Well, plus once I forgot my passport and we were stopped where we had to pass through Germany...and we never got to Vienna.  So I think Odessa is the closest I may get; it is so beautiful, old-world European buildings and squares, baroque pastel hotels, an opera house, those famed Potemkin Stairs.  Well, maybe you haven't heard of them but they are famous, in Russia, a symbol of the first Russian uprising when soldiers on the Battleship Potemkin mutinied and found safe harbor in Odessa; when tracked down by the Cossacks in control of the region, not only the soldiers but the residents, for harboring them, were machine-gunned down the stairs, and elsewhere, in 1905.

It's all memorialized in a movie, the Battleship Potemkin, but like the similarly-depressing Gallipoli, just because the movie's a masterpiece won't get me to see it.  Not even with a young Mel Gibson.  The Allies had almost 50,000 men die at Gallipoli, most of them British, many of them Australian and New Zealand new recruits sent in as fodder.  The Ottomans lost nearly twice as many, and that's not including other casualties; the total between both sides, deaths and injuries, was nearly half a million (473,000 in a campaign that lasted a year).  And all for what ended up being nearly a draw; no one in the end could use the straits, because they were so heavily mined.  Vicious, bloody tragedies--I can read about them, but I won't watch.

I have a feeling I'm not getting through the whole trip in this blog; we're less than halfway.  I'll give you just one more port, and then the rest next week.  Sevastopol.  Pronounce it any way you want; the locals seemed to.  It was a surprise, far lovelier than its name, at least in awkward English; it might sound lovely in Russian or Ukrainian, as named by Catherine the Great when it was first a fortress.  Like most of the other cities we saw it's a resort city and we saw a lot of swimming in the Black Sea, though all adults, and diving off of a concrete grandstand.  While other "beaches" in the Black Sea were made of sand, there apparently was none to speak of here so they made one.  It's nicer than it seems, I almost dove in myself.  We wandered the city up and down, through parks and , just the right size, on a candy hunt that led us to the central fruit and meat market.  Lots of people were playing like we were.  Few locals spoke anything but Russian or Ukranian, though we were able to buy things by holding up money and letting them have their way.  It is the second largest country in Europe, behind Russia, with the second largest military, much of whose Navy is based here.  This may be due to Sevastopol undergoing siege and occupation not once but twice, during the Crimean War and World War II.  Both times the people within suffered mercilessly;  the spirit they showed during the 1941-1942 siege made them a Soviet Hero City.  The obelisk monument for this is prominently displayed at the entrance to the port, next to the one with the seagull for scuttled ships.  Everyone pointed it out.  It's quite beautiful.  But to me, not as much as the Love Locks heart sculpture in Odessa, where sweethearts attach a padlock to signify their unending devotion.  That's what I'll end with for now, the universal language.