marientina

The Soulmates piece about John has turned into a short story but with a different theme. It needs a few rounds of editing to become publication-worthy but I have tapped closer into the reason why his death hit me so hard. Irina has put the dance company on hold so we may not do this piece for awhile. Our jobs are so consuming that only things that can be completed in short bursts can be accomplished. It is very frustrating but that is life.

In exactly one month, I will be in Athens with mom. Already the phone conversations are becoming unbearable. The anxiety of living in her world again without being able to just hang up the phone is giving me bad dreams. My family's problems are like a soap opera and I starred in it for awhile but now I prefer to maybe 'watch' while washing dishes, in the background instead of being in it. Inevitably, I often have to intervene. Interactive television maybe?

It has been now over a year that I threw myself into the research of thalassemia, ADHD, bipolar disorder, genetics and some related things. I don't want to say that I am closer to the truth because I don't think that exists in a vacuum, but I am certainly more qualified to inform a project. My mother would resent me for dealing with my life in terms of "projects", but in my experience when you're in the shit storm you can't think clearly, so I have learned to pull out and dissect. I can't help it. It is a coping mechanism. I also don't like to live a double life and pretend that "everything is fine" when nothing is. Nobody who really knows me would describe me as a private person. Perhaps in my first few months of coming here, but there was short-term trauma involved. It isn't who I am. Privacy is great but burdens are everyone's problem.

Secrets about health (mental or physical) destroy relationships and they distort public opinion about what is normal. They put more pressure onto the people who carry a burden. I see this all the time and while over-sharing is dangerous too, it may be better than being isolated. Shame of illness is deeply rooted in provincial attitudes about public opinion. When you grow up in a small place where everyone knows everything about you, being protective of health problems is top priority. My first experience with this was at my father's village. The neighbor's husband had hepatitis from alcoholism and all children were instructed not to go into that house because "they would get sick". Obviously the neighbor didn't have viral hepatitis but village folk didn't know any better. His house was stigmatized as 'contaminated' and we were scolded for visiting.

As I grew older, I noticed more shame and stigma of illness, especially if it was contagious or genetic. When we were little, my brother and I got lice and my grandmother was ashamed to tell anyone, especially parents of other children at school. Lice carries the stigma of uncleanliness and she could not face the world if we had lice. This attitude was so dangerous and permeates so many generations of my family that I am determined to break the cycle. There are bigger problems out there. HIV and Thalassemia are on my mind because they are both spread through ignorance. One is a disease and the other is a genetic disorder. Carriers of either are stigmatized and isolated and they bequeath further illness. I am a heterozygous carrier of beta thalassemia. In Greece that is labeled as "stigma". People ask you: "do you have the stigma?" Plain and simple. It is understood what it is. Language is great. "Yes, I have the stigma. So does my brother and father." So?

While reading "The Midnight Disease" book, I came across the interesting parallel of homozygous and heterozygous bipolar disorder. The book isn't about bipolar disorder but it covers it in terms of writing behaviour. The author wrote something that went like this: if we saw bipolar disorder as a recessive trait, it is possible that a heterozygous carrier may benefit from the brain stimulous the disease causes, just like being heterozygous thal protects somewhat against malaria and hypercholestemia (high cholesterol). Hmmm... I had never thought of this as such. It isn't of course black and white. Genetics is all about gray. More than 300 mutations of thalassemia exist and although it is a recessive trait, heterozygous mutations don't cause the same symptoms to everyone. If homozygous is on one end and heterozygous is on the other, there is in between thalassemia minor, intermedia and major, depending on the severity of clinical symptoms. Problems arise from confusion between genetic classification and clinical symptoms (genotype vs. phenotype).

There are monkey wrenches. Some homozygous carriers maybe not be as sick as expected. Some heterozygous carriers may be sicker than expected. And then there are other issues: a heterozygous carrier who receives a successful bone marrow transplant will be reclassified as thal minor or intermedia depending on clinical severity. It doesn't change who they are genetically. To many people's horror, a recently identified and rare dominant form of thalassemia has been observed, first in Japan and then in some other places. It causes defacto intermedia or major symptoms even if you are heterozygous. And then there is the irony of finding thalassemia, once dubbed a mediterranean disorder all the way to Japan. Thalassemia is found everywhere from the mediterranean basin, to the Middle East and then Southeast Asia and Japan. Human mobility trends stretch it in all directions and bring it into the American "melting pot", with Northern California being the "capital" of Thalassemia in the US. So many myths can be debunked through following the gene trail...

I take detours because what I learn from them informs my destination. I don't know what will come of it. Thinking in terms of "pathologies" is even relevant to the paper I am writing now about technology infrastructure in education. For the "Conversations..." project, I am thinking of distance, such that can be turned on and off through a phone conversation or video conferencing, any kind of remote presence really. Think 10GB link. Two people on both sides questioning what normal behavior is and how close we are genetically even when culturally we are completely different. Or maybe we aren't?

And then there is the complicated bond between a parent and child. The network, whether it is a phone line or a data network connection is a virtual umbilical cord: it is always there even if you are far way. It pulls at you. If I could observe my mother all day in HD and she could observe me, our daily lives interconnected full-time from afar, would we understand each other better through a safe distance? I have placed an ocean and two continents between us, but I am afraid I am just pulling on a large umbilical cord. I think of Frida Kahlo paintings with umbilical cords, or the two Frida's connected at the hearts. When one of the ends dies, does the link get snipped or does the fact that one end is three feet under make the other end feel closer to their own mortality?

I do not mean to be morbid. In my culture death is one of those things we dwell on, sometimes coldly and sometimes very emotionally. Ancient custom fused with greek orthodox tradition make for a very gothic up-bringing. We worship bones of saints on display. We dig up the dead after the flesh has melted, wash in wine and oil and put them in crypts. We drink flesh and blood of Christ as warm red wine and bread from a common cup (apparently you can't spread disease eating from a single gold spoon at church....uhuh...) Yet we are ashamed to say that there is something wrong with us. "Do not tell." Do not tell what? Don't be different? But we are all so similar. The truth is in the genes.

Tonight at midnight Greek Easter is celebrated. Christ rises from the dead. I mainly miss the fireworks at my neighborhood church in Greece and my mother's liver and intestine fricasse soup--yes you read correctly: liver and intestine soup. Do you think hot dogs are more sanitary? My mother scolded me for telling her I don't care to go to church. She will freeze some soup for me to eat in 30 days. I miss tradition but not religion. If I could be back to my little neighborhood, the little white church by the airport, the humble priest who had 11 children, the lighting of the candles at midnight and the bells and fireworks, the 1am feast and the clubbing till 9am, maybe I too could celebrate the fact that "Christ has risen." I dream of an IP camera into my past where I could revisit memories in full color, good ones and bad ones and then turn away, close the browser window and return to my 'today' and some project. I may be clinical in my dissection of reality but I am not void of emotion...

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P.S.#1 Moments after finishing this ramble, my mother calls again."Call your grandparents immediately to wish them happy easter!" It is almost 2 am there now. I feel the tug of the umbilical cord, two continents and one ocean away. Greeks, Jews and Catholics also know this tug as 'guilt'...Happy easter according to whom?

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P.S #2 And again at 4.30 am, she calls. Deep into her manic insomnia she rambles into my voicemail about calling the grandparents. "SMS me if you called them. I need to know." She continues the dribble for a few minutes as if I am listening in parallel. Like most of the conversations we have, they are one way. Thoughts get stuck in her mind and cycle without resolution. They become obsessions that inhibit her from living a productive life. Every night she sleeps at dawn. "Did you? Did he? How? What?..." And then again, the scary part: I blog it. How is that different than leaving a voicemail someone may never hear? Am I dissecting my mother or am I unproductively obsessing? I remind myself that between the genotype and the phenotype there are at least 256 shades of gray and the truth is not black and white. And no matter what, I can sleep at night, even if later by some people's standards. I have thankfully inherited 50% of my father's callousness... ;)