The "Science" of Prediction

Another couple came in before direct gene analysis was available and they had chosen not to have children. He had gotten a vasectomy because they definitely did not want to pass this gene on. That was their decision. Then they come back to me when direct testing was available years later and on testing he was found not to have the gene. So for this couple, by then, in their minds, it was too late to think about having children, possibly reversing the vasectomy, and they mourned the child that they could have had.

Testing negative, meaning you don't have the gene, for some people means oh, my Gosh, now I've got a future. Now I've got to do something. I've got to be something. They never let themselves think about that before. Now all of a sudden, what's expected of me? For siblings, where some test positive and some test negative, it is very difficult to be the one without the gene. First of all, as you can imagine, you go through the why not me, the survivor's guilt. Plus, there's a realization, you may then become a care provider.

For those who find out that they do have the gene, first of all, if you're still healthy with no symptoms or subtle symptoms which do not interfere with your life, it's fine to put this away. It's really OK to take this result, put it in a drawer, put it away. There's no need, if you don't want to, to deal with this now. You're fine. I talk to people about maintaining a healthy lifestyle. It's really not a great idea to drink, to smoke, moderation, exercise, eat nutritiously, take a good multivitamin with anti-oxidant properties. We all should be doing that anyway. So it's OK to put it away.

But for some, we really talk about what their life could possibly be like. I had an artist, a lovely young women who came in. She was used to doing very detailed paintings. She says, "What am I'm going to do? I'm not going to be able to do painting anymore." And I brought up that she could change the media that she works in. You could use broader strokes, do abstract paintings. And she said, "It's not who I am. It's not me. It's not my art." Years later she called me, because I keep in touch with my families. They're my families. And she calls back and she tells me that in fact she's still painting and in fact she changed the colors that she was used to using and she is using broader strokes and it's still working. We talk about working in clay. It's very forgiving. We talk about growing gardens, something where you can see progress, development.

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