Life, Minutiae, Toys, Irrational Phobias, Peeves, Fiber

Lifted Curse

Posted on | February 19, 2004 at 5:10 pm | 9 Comments

Today may have been the happiest day of my life so far. I debated talking about this in an online journal, since it’s a very personal thing, but it’s such a big part of who I am and what I’m feeling that I can’t just ignore it here. Besides, it feels great to have some good news to talk about for once. But if you’re embarrassed reading personal details about a blogger, skip the extended text…

Today my younger sister got the results of her genetic test for Huntington’s Disease and it came out negative. This means she has no chance of getting the disease that my mother and my older sister died of (not to mention uncles, cousins, grandfather, etc.), and no chance of passing it on to her three kids. Essentially this wipes out the disease in our family and I never have to worry about it again. It’s an extremely nasty terminal disease with no cure or treatment, that usually strikes around middle age, and my 3 sisters and I each had a 50% chance of inheriting it from my mom. I took the genetic test 6 years ago and it was also negative. We beat the “odds” in our family – since only one of the four got it (although that’s not a good way of looking at it, since each person has a 50/50 chance of getting it, independent of what happens to the others).

My whole family and I have been living under this cloud for so long that it’s going to take some adjustment to come out of it. But that’s definitely an adjustment I can make. Nothing can make up for losing my mom and my sister to this monstrosity, but at least I know we’ll never have to face it again. Thanks to those of you who have known about this albatross and have supported me over the years!

Anyway, there’s a link on the HDSA page for donations, and I urge everyone to throw something their way so that other families who have been going through this but haven’t been as lucky will have more potential for hope. There’s a lot of research going on and they’re getting closer and closer every day to some kind of treatment or even cure for the disease. I’d like to see it go away for everyone forever.



9 Responses to “Lifted Curse”

  1. Sue
    February 20th, 2004 @ 12:10 pm

    Rog, this is such happy news. I’m so happy for you and your family, and especially Lori & her kids. Yay!

  2. Jeff
    February 20th, 2004 @ 9:40 am

    That’s fantastic – and I suspect it’s the sort of thing whose full impact won’t be felt for a while. That is, you might have been unaware of how this possibility was lurking beneath any number of other anxieties, or making them worse, and now that this issue’s been resolved, those burdens too will be gone. It’s certainly good to hear some positive news once in a while!

  3. Alan
    February 20th, 2004 @ 9:51 am

    Great news, I’m glad she finally decided to get tested. This must be a huge relief for everyone in the family.

  4. Flasshe
    February 20th, 2004 @ 2:34 pm

    Thanks, guys! Jeff, you’re certainly right about the additional anxities. I know that after my own test was negative, I wasn’t as happy or relieved as I should’ve been, since the issue as a whole wasn’t resolved and was still peeking around the corner (especially since that was before my older sister died). It feels good to just relax now and worry about the usual things: cancer, bus accidents, layoffs, TV shows getting canceled…

  5. Miles
    February 20th, 2004 @ 2:47 pm

    Rog, I had no idea about any of this, so I am simultaneously saddened to learn that you’d been living under this cloud (and of the losses you’d suffered) and delighted to learn that it’s passed for good. This Snoopy Dance is for you!

  6. Flasshe
    February 20th, 2004 @ 9:09 pm

    Hi, Miles – thanks! Yeah, it’s not the kind of thing I talked about with very many people because 1) the privacy issue involving other members of my family, and 2) it’s just such a depressing subject and it tends to stop conversations cold. It’s not that I don’t trust people to understand, it’s more like I’ve been down the road so many times before that it’s often less stressful to not dwell on it. I needed some parts of my life, some relationships, that I could escape to, where this wasn’t an issue. (More true before I took the test, as you can imagine.) That said, my discussions with Sue & Joe, who urged me to take the test, contributed a lot to me finally deciding to do it back in late ‘97. For that I was grateful, especially considering how it turned out. Living under something like this brings a whole new meaning to compartmentalizing your life.

  7. Miles
    February 20th, 2004 @ 10:30 pm

    Rog – no need to ’splain, friend, and I said what I did not because I felt left out, but because I felt bad that you’d had this hanging over your life for so long.

    It’s good not to have to explain every little thing to everybody or have to put up with even more "how are you doing?" sort of questions. And while compartmentalization is a strain, it’s also necessary – and underrated IMO. People like to act like it’s somehow being false or unfeeling, but done in the right measure, it’s also known as coping, dammit.

    And hey, you fixed that thing where my e-mail addy was showing in that weird way (probably caused by me typing in an extra character or something)! Cool!

  8. Lorrie
    February 21st, 2004 @ 9:58 pm

    Rog, that is wonderful to hear! Even more so because now there are three kids who don’t have to worry about it. Great news for you and your family.

  9. patty
    February 26th, 2004 @ 11:38 am

    :D whew!
    that IS good news!
    nOw you can smile
    easier and laugh longer with us my good friend!

Comments are closed.