reflections

I have an appointment tomorrow. It will end almost a year’s worth of uncertainty, doubt, fear and resentment.

If I test positive for the Huntington’s gene, then there’s a good chance that I’ll be dead within the next 20 years. During that time I can expect to slowly lose my mental stabilty and my social skills, gradually alienating those who are closest to me. Most people with Huntington’s have few or no friends, and repeatedly attempt to end their own lives.

The testing has been significant. I’ve been seen by consultants and counsellors, undergone psychometric analysis and had my blood taken. Now all that remains is for me to get the result - which has turned out to be the toughest part of it all.

I thought hard about whether to write this post, and if it was necessary to let the people reading my blog into this part of my private life. I decided that I should say something, because like it or not this thing has fundamentally altered who I am, affecting me in more ways than I would like to admit. In doing so it has changed what I write, and so how I blog.

One thing that I’ve learnt is that life can be fragile. You need to cease each day with both hands, and don’t let go until another one comes along.

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It’s just seven days now until my test for Huntington’s, and to be perfectly honest I’m shitting bricks. I don’t think I’ve ever been so nervous about something in my entire life, and it scares me to think that the results of the test could be positive…

I don’t think I’ve got it if the truth be told. I’m not exhibiting any of the symptoms, and I certainly don’t behave like my estranged Mother (who has now been tested after twenty-five years of denial, and has it) or Brother (also in denial, and has gone so far as to lie about having been tested when he quite clearly hasn’t). I just don’t know what to think.

I heard a story about a guy whose family had mostly got the disease - we’re talking his siblings, Mother, the lot. He was so very sure that he had it too that he didn’t bother to get tested for years and years. He had all the symptoms too - including the memory loss, mood swings, and the shakes. Then when he did finally get talked into being tested, it turned out that he didn’t actually have it - and the whole thing had been psychosomatic. It messed him up for a long time, partly because of the guilt he suffered from being the only one of his family not to get it, and partly because of the shock to his system.

The worst thing is going to be the 4-6 week wait for the results, once the test is done. That’s gonna be a real nail-biter. I’m not sure yet how I’m going to cope with the last stage of the waiting… I guess I’ll just keep telling myself that it’s all going to be over (one way or the other) at the end of it.

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