From the mom:
"Who's going to marry her?"
Brutal.
I saw that, couldn't bring myself to read it.
Yeah, I read that yesterday and thought, that's gotta suck.
I also thought, if I knew I was going to start falling apart in twelve years (actually, if I had what she has, I'd have started it two years ago), what would I do differently? And the honest answer is probably develop a suicide plan and then spend the next decade just fucking around doing stupid shit traveling around the world like a college student.
On the upside, guilt-free smoking!
This article was like a compressed novel, what with the mother's cruelty and erraticness possibly being explained by an early onset of the disease and the courtroom confrontation and the creeping certitude of death death death.
I have to say that I sort of agree with the therapist who urged her not to have children. I'm hoping that the therapist crushed her dreams as theuraputically as possible.
As you search for someone to date, ogged, remember to look for someone who has a need to scratch the "deeply depressing" itch. Poor woman.
That was a hell of a story. The family situation was pretty grim. Of course, she gets to go through her mid life crisis while being young enjoy to really enjoy it (although it sounds like colleges loans are an overhanging issue - or at least the fact she actually plans to pay them off. OT, in America, is there a phase of maximum opportunity for financial irresponbility - where the debt versus income curves actually seperate during ones lifetime? It would appear to be just one damn thing after another).
And the honest answer is probably develop a suicide plan and then spend the next decade just fucking around doing stupid shit traveling around the world like a college student.
Yup.
I couldn't bring myself to read it either.
The whole issue makes me think of the prenatal bioethics stuff that LB (?) posted on last week. I mean, within 10 years a large percentage of us* will be able to be tested for a a number of very scary genes. Some will be clear-cut cases (i.e., we can predict with relative certainty how fast the disease will develop and how debilitating/fatal it will be). But a great many will not.
Are we all going to live our lives recklessly after a "pre-diagnosis"? Are we going to feel honor-bound to live as avoid-ing-ly as possible, staying away from foods or activities known to trigger certain diseases to which we are predisposed? It's happening now, but the tests are too pricey and the predictions are too variable for insurance companies to be able to bully us into them all.
I think this is an area where our technology is going to outpace our social understanding of how to behave for at least a generation.
*Reasonably well-off people in industrialized countries
I knew a guy in college with cystic fibrosis. They've made a lot of progress keeping people alive with CF in the last few decades -- I'm pretty sure he's still around. But when I met him at 19 or so, he was at his life expectancy: he was expected to live to 19 or so, and he was 19.
Scary smart -- there's not a lot of people at MIT who do the 'blow off classes all term and then ace the final' trick -- but had a personality that was clearly the result of not making any long term plans. Very self controlled and sensible some ways, but really just didn't give a damn.
But I suppose it's different growing up with imminent death staring you in the face and having one handed to you when you're in your twenties.
This is a really sad story, but is it that different than testing positive for HIV? Not cheapening it, just saying this isn't a unique futureville genetic testing situation.
My mom was just talking to me today about how my sister and I have to be careful about our lifestyles now that we know we have a family history of colon cancer. Pretty different from this, though, because it's easy to catch in the early stages if you know to look for it.
I tested positive for a BRCA mutation.
As awful as the HIV/AIDS drug-cocktails might be, they do seem to stave off the symptoms that really make people's lives miserable and short. There don't seem to be any drug treatments developed for Huntington's disease.
Yeah, and there would just be something different about a disease that's embedded in your DNA and one that, however intractable, was essentially something outside yourself, you know?
A friend of my mother's had a terrible breast cancer that she survived, after a double masectomy, and her doctor husband wanted their third daughters to get preventative double masectomies because their genetic risk was so high. They told him---quite reasonably I think---to fuck off and calm down. They probably get very regular tests already in their late twenties/early thirties, though. It's a scary thing.
I dunno, JM. I'm planning on getting prophylactic masectomies after I finish breast-feeding. I've got an 80% chance of getting breast cancer before I'm 50.
That's a little more reasonable than "Right now! At 25! No time to lose!"
True. I thought you were commenting on preventative masectomies in general.
Well. I'm a little nervous about the idea of preventative masectomies in general. I should cop to that.
It seems so drastic?
It's squeamishness talking here, not any considered scientific opinion. But wouldn't very very regular testing catch something early enough that you could have a masectomy then?
But no, you're probably right, and I'm sure you've given it a lot more thought than I have (there's almost no incidence in my family).
18: I think I'd do the same. In fact, I might very well do the preventative mastectomy at 25 and just go hey, formula. Or banked breast milk. Although of course, not being at risk, I really don't know anything about what can be done vis-a-vis early detection and all that, if you know you need to monitor.
17-24: I was having deju vu all over again until I realized that yes, this discussion did already happen, but no, not at Unfogged. (I think it was at B's blog.)
Yes, it was at B's. I didn't read it, but I remember seeing discussion about it on other blogs.
Oh right, that was Stroll guest posting. I don't think I read it either, actually.
23: But if they catch something even very early I think you have to go through the full chemo routine, right? That's not fun. We've got a neighbor doing it now.
If it were available and indicated, I'd have taken a test for something like HC before or after I had kids, depending on when it was suggested. I'd either not have had them in the first place or planned to leave a pile of money if I knew I wasn't going to be around while they still needed support. Now, I wouldn't bother, I'm going to find out what's going to kill me soon enough, and while the kids might miss me for a month or three they don't *need* me for anything.
Yeah, and there would just be something different about a disease that's embedded in your DNA and one that, however intractable, was essentially something outside yourself, you know?
That's part of it, but it's also that with AIDS, even if you get really ill, you're still yourself; Huntingdon's attacks your identity, too.
with AIDS, even if you get really ill, you're still yourself
Not with some side effects. Encephalitis...or one of the most horrifying things to contemplate, cytomegalovirus-induced blindness that goes from zero to full within a couple days.
It's not inevitable though.
Part of me wants to tell this girl just to live her life as normally as possible. She could die in a car accident five years from now, or get hit by a bus tomorrow. I hope she has something going on in her life besides the Huntingdon's disease; it's gotta be all but impossible, but it seems somehow worse to think that not only is her life going to be diminished in her mid-thirties, but that her twenties are going to be just preparation for dying.
Cala, that was on my mind too. It's like her current life is all about the disease in a way that, maybe, is a bad thing. If you want to be all about Huntington's, your choice, but it sounds like she's been absorbed by it in a less reflective way.