04 January, 2012

You never when it's going to be too late until it's too... late

The window of opportunity for understanding my origins is forever narrowing.

I started this blog entry well over a year ago. It was an idea I had, I guess. But I stopped. It was undoubtedly during a broad window of writer's block.

When I was in high school, or perhaps younger, I did a project for either school or some personal reason, where I interviewed my grandmother - my mother's mother. I don't remember what I asked her. But I do remember that she didn't remember as much as I would have hoped she'd remember about her past. And I probably didn't ask very well-formulated questions.

I never got a chance to ask any of my other grandparents those questions. With the exception of my father's father, they were all born in Europe around the turn of the century. That was a different time and place. There was no electricity. There was no internet. There were no refrigerators. There were no cars. It's weird to me to think that just that gap of two generations holds such immense changes in how life was lived.

I talked with my mother a lot, about a lot of things. But I wish, now, that I had conducted lengthy formal interviews, extracting every bit of knowledge I could, and taking good notes. I wish I knew about her childhood more than I do. I remember her relating tidbits such as when I asked her about what it was like growing up and she said "We all [her sisters] believed that we were our father's favorite, and that our mother hated us." I remember stories about my mother's father. I knew he'd lost his leg because he was hit by a fire engine. I knew that he had a temper and he was good at playing cards. I knew that people had only a vague sense about what he did for a living. As a child, I recall stories about how he either worked for the circus or was in the Jewish Mafia. I don't know what the truth was. And I don't know why it was so opaque.

I used to ask her questions about how she and my father met, and she would always tell me crazy stories about how my father supposedly wouldn't tell her what he did for work for the first few months they dated. I know that my father's mother didn't care very much for my mother. That she wasn't good enough. Just all these little snippets. But it's not a movie. It's like notes inside fortune cookies. I didn't get to ask her everything I wanted to ask her. And I have forgotten the details of many things I did ask. It seems ironic to me that I used to get so upset when my father would tell me he didn't remember things from the past, but I am now forgetting things from the past. Though, I think I remember my past better than that of the stories that have been related to me.

I want to know more about my father's time as a child. I want to know more about his father. Even though my mother's father died thirteen years before I was born, I know more about him, because of the few stories, than I ever have known about my father's father, who was alive when I was a small child. I only remember visiting him in a hospital bed. I know that he was part of a business with partners, something like a hat store, and that his partners "screwed him out of the business" (that's how someone related the story), and that they lost their home in the depression and never owned a home again for over forty years. But that's all. I don't know what they were like.

The only ones left in my family from whom the stories may be told of the past are my brother and my aunt. There is probably much they can share of their respective generations. And they both are great storytellers.

I learned much from my brother about how different my parents were when they were younger, with him being eighteen years older than me. But again, the stories don't feel like I'm really there. I don't know what it is. It's like I'm wanting something deeper than a story can provide. And nobody's memory is sufficient to quench my desire to feel what these people were like.

I would love to know more about my father's time in the Navy. Or in college. To know what he wished for when he was young. What did life look like?

I loved it when my mother would tell me little memories... she told me what it was like the day that JFK died, and I could feel the emotion. I want that reality, that intensity, for the entire movie of the entire history.

But she's gone.

And people are aging.

And I am aging.

And memories are fading.

And at some point, in the not too distant future, it's going to be too...

Home sweet home sweet (bittersweet) home

The truth is, you can have two homes.

I've struggled for years now as to "What is home?" When I moved to Seattle, there was a long time where I spent my time pointing out all the ways in which Seattle was lacking. Inferior infrastructure. Inferior pizza. Lack of anything really "old." There was a long list. It went like that for a few years. And then, at some point, for a variety of reasons, Seattle became home. And suddenly, I dreaded Boston. For completely different reasons, however. It was not that I changed my preferences about pizza. Or mass transit.

I developed an aversion to the pressure of visiting family. Of having to stay in the uncomfortable, tiny bed of childhood. The deep immersion into family which I had told myself I was happy to be away from. The weather. Hot or cold. The feeling that a family visit was not really a vacation, and there's only so much vacation time. So, for many reasons, Boston became a dreaded trip, and a place I could never imagine myself living again. Each trip was short, and rushed, and felt frantic and tiring. And when my mother died, it felt like Boston had become repellent to me. I did not want to return. Ever.

Then, my situation at work became such that there was an opportunity to travel to Boston periodically. And suddenly, my attitude began to change. Visiting Boston meant visiting Boston - the city. Working in the city. Staying in the city. And visiting family and friends as a part of the trip. Now, Boston became a trip to a really cool place I used to know, without being too deeply immersed in the things that made me uneasy. And that made me develop a new fondness that may have even exceeded that which I had when I left.

In the course of about a year, I think I visited Boston four times. It was a period of transformation for me. I started to feel more connected with family. I started to feel more connected to my history. I felt connected to my roots.

And then I left the job where I was afforded that opportunity to visit home on a company dime, and stay in fancy hotels, and eat on a per diem budget.

And I haven't visited since. Instantly, my aversion to visiting has ratcheted back up again. I don't even know when the last time was that I visited, but I believe it may have been about a year ago. And, as before, the longer I go without visiting, the more I don't want to go. And the longer I go without visiting, the more it becomes imperative that I visit sooner rather than later. And that, again, makes me want to move to Irkutsk.

So where is home?

02 January, 2012

23andMe and the prospect of eugenics

Though not quite as elaborate as the eugenics of Gattaca, 23andMe is a service that, for $200, will tell you quite a bit about your genetic traits, disease risks, and family heritage. I decided it would be a fun thing to do. Actually, I decided it would be a fun thing to purchase as a gift for a friend who is a biologist. And the friend, in turn (and independently), decided it would be a good gift for me.

There's a lot of information in the results they provide. Some of it is not at all surprising, such as validating your risks of diseases that you already know are in your family (though, it's a reassuring "positive control" to see this appear in the data). There's also a lot of muddier information, where they tell you that you've got potentially elevated risk for something, based on some of the markers in your genome, but potentially decreased risk based on other markers. Of course, that's completely to be expected, but leaves you with not a whole lot of certainty as to whether you actually are at risk.

I suppose there are only a small number of cases where one learns something extremely significant about one's genetic risks. 

One of the neat things about 23andMe is that they have a large number of surveys where they ask you about your own traits, history, and drug sensitivities. The answers to these survey questions, combined with the genetic data that they have collected from a large number of participants, enables them to occasionally identify new associations between markers and traits. So this is a two-way service. They tell us something. But we also tell them something that is used to fuel further scientific discovery.

So what did I learn?

I learned that I have almost double the average risk for prostate cancer, which was interesting to me, because there are no known cases of it in my family (to my knowledge, though my family is so poor at communicating, that perhaps I wouldn't have heard about it anyway).

I learned that I have dramatically lower risk for any type of colon disorders such as cancer, irritable bowel, Crohn's Disease, etc. That's good to know.

I learned that I have much greater than average risk of heart disease, which is consistent with the fact that heart attacks, angina, and arteriosclerosis are widespread on my mother's side of the family.

I learned that I have significantly lower-than-average risk for developing Alzheimer's Disease.

And I also learned that, on my maternal grandmother's side of the family, my heritage at some point traces back to one of the most common European ancestries; not a purely Jewish heritage like I would automatically have suspected.

There are a bunch of other things, but these were the ones that stood out as particularly interesting.

Moving back to the Gattaca topic... how will this data be used in the future? Will insurance companies be allowed to genetically screen people? Should they be allowed to do so? Why is it okay for life insurance companies to charge higher premiums for people who smoke, but it's not okay for health insurance companies to assign higher premiums to patients who carry higher risk for developing diseases?

The quick answer is that lifestyle choices are something we can control, but genetics is not. And we have actually seen health insurance moving in the direction of more privacy, rather than less, in my lifetime. I recall being denied health insurance because of something that was seen in a physical examination when I was in my twenties. It turned out to be a mistake. But the fact is, it happened. Today, we don't see that happening. And even preexisting conditions seem to be covered. Should they be?

Should a health insurance company need to be forced to take on a high-risk patient, and lose massive amounts of money? Or, at the least, should they be allowed to say "Your genetics indicate you have double the risk of cardiovascular disease of general public. Thus, if you want us to insure you, we're going to charge you such-and-such a premium. And if you smoke, the premium will go up by this much. And if you do not maintain your weight below such-and-such a level, your premium will go up by this much."

It sounds brutal, but it is also completely logical for health insurance companies to want to do this. Of course, the resultant litigation would be a nightmare, as would the attempts to falsify data that the health insurance companies can maintain.

The Gattaca scenario of carefully selecting the best possible genetic material, so as to avoid these expensive outcomes seems like a more viable solution than the approach of prorating healthcare.

But can you imagine the battles there would be if the government tried to mandate in vitro fertilization for the purpose of eugenics? There would be huge opposition from the religious right, and from the personal freedoms supporters of both the liberal and libertarian groups. Who would support such a thing? What ideology? It would be easy to envision it in the context of some horrible ethnic cleansing. But what does it mean to cleanse, not by ethnicity, but by genetic "fitness"? Is that any better or worse? And who decides? In a purely capitalistic sense, one could set the goals at eliminating those diseases and disorders that carry the largest price tag. 

It's a scary thought. I cannot really envision us going to it. But it is also (in my opinion) nearly equally odd that individuals who are born with zero, or virtually zero chance of normal lives are provided millions of dollars of medical support, while we don't have the healthcare resources available in this country, or in other parts of the world, to provide basic healthcare to everyone.

The argument is political, philosophical, ethical, and economical. Of all those "-ical" arguments, I suspect, in the long run, economical will be the trump card.

One final angle to consider is the impact that such data could have on relationships and marital choices. If you knew that your partner was a carrier for a trait or a disease, how would that impact your decision to start a family? The implications here are slightly more favorable, in that eugenics could offer couples the opportunity to screen to avoid genetic diseases. This already happens today. But a more widespread availability of such data, and the stigmas and propaganda that could evolve along with that availability, could lead to a new type of relationship conflict. Ultimately, it could give rise to new approaches to "mate selection." One could even envision dating sites where, instead of using a special formula to find your best matches based on preferences and personality, you would be given your best matches for genetic compatibility. The possibilities, again, are endless.

01 January, 2012

Precious things lost forever

When in doubt, don't get rid of it.

That is truly a motto to live by. Because you never know what you'll be sorry to lose. And sometimes, you do know what you'll be sorry to lose, but you let it go anyway. One might point out that this could be taken to an extreme, in the case of pack rats, hoarders, etc. But for the average, balanced person, I would say that if you have one moment's hesitation, keep it. Find a place to put it. Give it to someone for safekeeping, even.

I wrote those first few lines over a year ago. And interestingly, almost exactly a year later, the topic came up again today. Today, I put a little spin on it though. If it has any sentimental value whatsoever, keep it. If it's a stack of random papers that mean nothing to you, that you haven't looked at for 6 years, toss it.

I've lost a few precious things.

A dollar bill. Hand-made greeting cards. Guitars. And in every case, I could have and should have known at the time that I parted with them that I would long regret the decision. In one case, it was brief brainwashing that led to the relinquishment. In another case, it was fear. When it came to guitars, it was the illusion that I needed the paltry amount of money from a sale in order to justify the purchase of some other piece of gear.

Even today, with my countless guitars, I am still heeding my own advice to part with none because I don't need the cash, and well, you just never know when you're gonna wish you still had that guitar. Of course, the guitars are replaceable. The greeting cards were not. And neither was the dollar bill that belonged with the cow.

Don't lose your precious things.