Who Are We? A Quick Tour of Genetics, Geography, and Georgia O’Keefe
Today, a five a.m. wake-up call and a stack of to-do lists. Ronan is facing me at the other end of the mini-couch in our front room, talking and smiling (and hiccupping!), playing with his book and his “Websies” toy and his plush donuts from Aunt Susan. Darkness still waits at the windows. Rick has rigged up a box in the front room for “toys on rotation”; he’s cleaned the floor until it shines. Ronan is curious about what I’m writing, looking up every few seconds to check my progress and smiling. There may have been a “pooping” face in there, too. In any case, he’s excellent pre-dawn company.
This week was the anniversary of Ronan’s diagnoses: 1.10.11 – a date that looks ominous somehow, even without the associations, a release date for a horror movie that flashes on the screen after the movie trailer. This week, en route to the Plaza and the Georgia O’Keefe museum with Weber, the geneticist called with the “other half” of Ronan’s blood test results. Although one of Ronan’s genes was easily identified as one of the 9 mutations common among the Ashkenazi Jewish population, after his DNA was sequenced, another very rare but identifiable gene was discovered. Last reported in 1997, it is associated with those of Moroccan heritage. I was expecting Irish, even Jewish (a part of my family is German, so that seemed possible, if unlikely, and would have been a great conversation starter at the next family reunion, and would also, I thought, speak to my desire to convert to Judaism four years ago), possibly French Canadian. But Moroccan? Really? My parents both grew up in a small town in Illinois. Farm country. German. Irish. Norwegians and Swedes. As children would they have been able to even find Morocco on a map?
We know that persecution and isolation gave rise to the Tay-Sachs gene: Eastern European shtetls isolated from the non-Jewish community, a separation enforced by pogroms and other forms of violent persecution that led to intermarriage; the colonial boot in Ireland. The gene has been discovered among French-Canadians and Cajuns, although it is still widely – and incorrectly – known as a “Jewish “ disease. (In fact, the Ashkenazi Jewish population has been so vigilant about testing that the number of affected babies has declined greatly since the 1970s, in part as a result of intermarriage, but also due to increased awareness efforts.) The numbers of our genes will arrive in the mail this week, and then the research will begin. “We really don’t know who we are,” the doctor reminded me, “or how old these genes are, or where they come from.” His voice, calm and reassuring, and then, in my head, the geneticist at Cedars-Sinai in Los Angeles, surprised that I’d had the Tay-Sachs test at all, saying “The odds are astronomical that you would be a carrier.” (Enter Morocco).
When I learned I was pregnant (via a surprise phone call at the old Novel Café in Venice while on a writing date with W) I became obsessed with odds. I quickly ordered every prenatal test available to me, even those I was told, “based on my background,” were unnecessary, including the test for Tay-Sachs. A lifetime of living with a rare congenital disability had made me wary of odds. You might say that pre-natal testing failed me in this respect; and yet I failed to read the fine print (closely examined now after receipt of my medical records) that indicates how the standard blood test offered in a pre-natal screen detects only nine of the most common mutations and leaves the other 91 (and counting) up to chance. All that vigilance, and yesterday I sobbed on Rick for an hour in the afternoon, took Ronan out for a mashed avocado (margaritas for me and Weber) at Maria’s, and after dark found myself looking up at the bright disc of the moon from a hot tub at 10,000 Waves in Santa Fe, calmly thinking about Ronan’s memorial service, and how to make it joyful and meaningful. Every day feels like running a marathon on a gravel road in the dark – dust obscures your vision and crowds your lungs. Where you’re headed – who knows?
In 1997, the last time my gene was detected, I was a Fulbright scholar living in Seoul, South Korea, on the verge of a nervous breakdown. Panic attacks, shaky, caffeine-powered days and sleepless nights, hours spent riding the subway back and forth across the Han River and looking out the small window of my bedroom at the red neon crosses that seemed to float above the flat roofs strung with laundry-drooped clotheslines. A molten, polluted sky overhead. All that time I was struggling to come to grips with the disability I had so long ignored; my ignorance at that time seems almost precious, so outwardly focused, so concerned with the body’s physical aspects, a struggle to accept it, live with it, when all along there was this inner landscape of genetics, accidents of geography that may be impossible to trace, all of which added up to the existence of this beautiful child whose body cannot withstand life for more than a few years.
Where are these genes from? How old are they? So, nobody knows, and perhaps it wouldn’t help to know, but I can’t help wanting more information, and wishing, not for the first time in my life, that the word “rare” was not associated with any aspect of my physical body.
Rare. Everyone knows the story of Georgia O’Keefe arriving in New Mexico and, startled at the rare and austere beauty of the place, proclaiming to her friend, “you didn’t tell me it would be like this.” Over a series of years she installed herself as a permanent fixture in the state – painting, worrying, writing letters, working in her garden and trying to buy a house from the Catholic church (she eventually succeeded). The museum in Santa Fe houses a rotating and careful selection of prints and paintings. In a small theater you can also sit and watch a few videos about O’Keefe’s artistic development – one narrated by Gene Hackman, and the other featuring the worst “Georgia” voiceovers ever (I thought of the bad movies we once watched about the electoral process in civics class). The feedback from one of her first shows sexualized her paintings, an interpretation she found disturbing and misguided and unexpected. She started painting peaches and pears. This misinterpretation stuck, however, and for all of her originality and genius, for all of her decades of work that altered the world of modern art, people still refer to her flower paintings as “vaginal.” Dismissive, pejorative, demeaning.
Today, the sun is rising. Time for peaches, physical therapy, a walk in the crisp air, the blue-tinged mountains ringing the arroyo path, birds singing from the bare trees. Who are we? Where do we belong? Perhaps it doesn’t matter; perhaps it is the only thing that matters. This place, this time, today, this morning. No, I didn’t know it would be like this. Perhaps the only mistake I made was assuming I could know.