Since studying the film Gattaca in year 12, I don’t think I’ve watched it. Yet 12 years later it’s suddenly stuck in my thoughts. For those who haven’t seen it, basically it’s set in a time where natural conception of a child means they’re outcasts. Instead the norm is pre-selecting the genes of your child and essentially predetermining his or her life path.
So why am I suddenly thinking about this film and what’s it got to do with my illness blog?
Well, in May I volunteered to give a group of medical researchers in America a sample of my blood. The purpose of their research is to check for a particular marker thought to be related to narcolepsy.
This genetic marker subtype is known as DQB1*0602 and I have it. So was my fate sealed like in the film?
I received my letter yesterday telling me the result. The researchers were very careful to explain that this is not a diagnosis, and there are people with the gene who don’t have narcolepsy and people with narcolepsy who don’t have the gene. Even so, the news hit me in a way that I was not expecting.
Despite my diagnosis 2 years ago, there’s always remained a question mark as to whether I do indeed have narcolepsy, especially as I don’t have cataplexy. Whilst I thought that this uncertainty was just making me depressed, it seems that it was also my glimmer of hope that perhaps the diagnosis was wrong and that one day I’ll get a different diagnosis and find a better treatment (or even a cure).
But now I feel that the hope has gone. I have to accept the fact that I was quite literally born this way. That little mutated gene has made me susceptible to getting narcolepsy.
So I guess now I need to try and refocus my hope because I need that something to hold onto and help me keep fighting. I’m 30 and as each person *jokingly* told me as I hit the big 3-0, my body is now going to start falling apart. Turning 30 didn’t scare me, but falling apart sure as hell did!
Am I just going to keep getting worse? I’m terrified of the thought of no longer being able to work, play and live a “normal” life.
For now all I can do is hope that this genetic marker one day help me find treatment or at the very least, answers.
I WILL be the Ethan Hawke of my story and I will keep fighting. At least that’s what I’m going to keep telling myself…