Suzy, Drinker Of Coffee

One day, we knew this day would come

I did warn you all back on Saturday that this date was coming up. If you didn’t read the post (shame!) then today was the day when I’d be getting the results of the blood test taken to analyse my genetic build up to determine as to whether I’ve picked up the genetic defect (repeat) that makes up Huntingdon’s. Before today, no-one (barring the medical staff) knew which way it went. It was a 50/50 chance either way.

In the end, the result was given, and was fairly clear cut. If you ever have had this done, or know someone who has, you will know that the figure which is considered to be having developed the faulty gene is something like 16 or 18. Naturally, you are hoping for as little a repeat as possible. (I forget, but I am sure you can Google it if you need to). My result was 46 – well into a “medium” case, and now have a very good chance of developing the same conditions and disturbances that my dad has been through in the last ten or so years. They don’t use the terms positive or negative, or didn’t in my presence at least, but it’s a positive, no doubt about it.

So, what now? This doesn’t change a thing for me right now. It just means that longer term i.e. into my thirties/forties, there is a good chance I will end up as he is now. Or worse. Or better. Maybe even avoid it altogether (v. unlikely). There’s no cure. There’s no current treatment, but someone with more money than me is spending a lot of it trying to find one. As I said back in March, there’s no “reinstall the drivers and phone us back”. There’s no putting a new body on the old insides (well maybe, but that’s something else). But lets go back a step. Thirties or Forties? I’m 27 on the 16th of January…

There are various medical studies on the web which show a *possible* genetic disturbance in transsexual people, even those who’d not gone for any injections or surgery. As the father’s “side” is what determines the birth gender of the child (at birth), can there possibly be any link? Far too early to even tell, but it’s kept my mind off other things. There was talk a few weeks ago on the Venus Envy discussion group (I swear, one day they are going to talk about something to do with the strip!) about genetic testing which could predict trans in the future. It could never happen, and it might give people the wrong idea. Maybe this is what they said about HD all those years ago.

I went back to the ward with my mother (she’s still in Ward 4 Ninewells, but getting out this Wednesday), and stayed until just after 1510. 54 home, 313 – showed up on the “real time” as 5mins but was outside when I walked out… Maybe I was walking slowly for once. I came home. I thought, and dozed off for a bit. Booted up the mobile, tried messenger on the mobile, tried to get to Jay… maybe next time, as I think his pc kept crashing. Or something. With luck I’ve not given him a heart attack…

I still don’t think it’s hit me what has happened. When I went for the test last month, I could barely sleep. This time, I made sure I could in advance. Maybe that’s why I was chilled so that it all just has slipped over me. It’s not, I’ve taken in every moment.

Back in 2001, I was somewhat depressed following a spate of bad luck. I was miles from home, just out of hospital for five weeks and no better than when I went in, no job, having the landlord kicking down the door drunk, and the deep down suspicion that somewhere, somehow, I was going to end up with whatever it was that my dad had. At this time, I wasn’t out as my real self. Yes, I’d admit to saying I felt suicidal then. Someone kept me talking… until the police were at the door… you get the idea.
Four years later, a lot has changed. Job and home can sort of both keep each other happening. Other medical issues have come and gone, came and got worse, came and improved, so I’m better now than I was. Only now, my fate is confirmed. At least it gave me some hope for the last four years, in which I did accomplish a hell of a lot, sometimes acting against the odds, and even beating my own expectations.

One of the most basic rules of medicine is “if it’s genetic, then you’re fu*ked”. Oh yes. Except this time, there was a chance it might not have been – my brother has tested ok. Now my sister is next up for thinking about it, esp. as she’s just passed 18 and is now engaged (that’s making me feel even older now…)

So what now? I really don’t know. It does not change anything for me. I won’t be doing anything any differently. It means that the time I’ve spent attending appointments and departments before getting ok’d to go ahead with testing can now go back to being spent in progression of pursuit of the “new” me. That will not change. The results were something that I could not have changed, no matter what. As I said on Saturday, by the time conception has occurred, it’s already too late. Because I was conceived more than thirteen years before anything was known about this, and about fifteen years at least (rough dates but you get the point) before my dad knew about this, there was no reason to suspect this.

My mother used the opportunity to reiterate her faith to me, which I found a little out of place (but hey, I’m used to it just about every time I see her). She still thinks someone out there is looking out for me. In what way? Protecting me from passing this onto anyone else (children) by punting me out in the wrong body and leaving me to my own for sixty odd years? Oh yeah, nice one, what about me in the meantime? Religion and her choice of words in such are for another day. For the last few years, I’ve been living and surviving on self-belief. Right now, it’s maybe all that’s kept me going. Into 2006, who knows what will happen?

Kind regards
Suzy xxx

posted by Suzy Scott @ 23:30