Why I’d wish people would stop obsessing over my but
...Not that kind of but: I don’t have a gluteus maximus like Nikki Minaj (I wish I did). No, I mean the ‘but’ that is the contrasting conjunction; ‘but’ as in I’m perfectly healthy but I have a 50% chance of inheriting Huntingdon’s disease…
Announcing that your parent is gene positive is no easy feat; it’s a trek that’s consumed with thousands of questions. So, I’ll (briefly) answer the ‘FAQ’ before I go on my rant about my big but: “What’s Huntingdon’s disease?”
A google search shows us the NHS’s description of how HD progresses after the initial symptoms become evident: “Huntington's disease is a condition that stops parts of the brain working properly over time. It's passed on (inherited) from a person's parents. It gets gradually worse over time and is usually fatal after a period of up to 20 years.”
Allow me to translate: Huntingdon’s disease is a life-limiting illness; it removes all your decency before mercilessly killing you. What that definition fails to mention is the way Huntingdon’s disease changes everything about you. Your movement? Involuntary. Your cognition? Impaired. Your emotional torment? Invisible.
As you can imagine, your parent having the HD gene isn’t exactly winning the genetic lottery. But what you cannot fathom is the extent Huntingdon’s Disease will go to ruin both your life and everyone’s around you – it’s commonly referred to as the ‘demon child of Parkinson’s and Dementia’.
It isn’t the fact that my dad is going to die like this that bothers me, nor that I have a 50% chance of the same. Rather, it’s our culture of toxic positivity: the frequent, unsolicited declarative – “But it’s only a 50% chance!”
Seriously?
My 50% chance is more than they’ve got. A 50% chance more of dying before I retire, a 50% chance more of not wanting kids, a 50% chance more of becoming a brain-dead blobfish before I die.
“But you could die of something else before that anyway!”
But I have a 50% chance of dying without dignity.
“But you’re not dying now!”
But I have a 50% chance of dying 14.5 years before you.
“But you have more of a chance of getting cancer!”
Ironically, my Nan is dying of a genetic throat cancer. The one that’s ranked as the second cause of death by cancer worldwide (Pierre Lao-Sirieix, 2010) . Everyone has one third of a chance of getting cancer. I have a 50% chance of inheriting HD. That woman’s maths was off and that annoyed me more than anything.
“But-”
But. But. But. But. But.
Most of all, I’ve been told that my outlook on this is that the glass is half empty rather than half full. Either way, my glass has sewage in it and yours has water…
Still, us Britons love living in blissful ignorance. Our collective attempt to hide the slightly less than perfect elements of our lives might work in some situations, but if you cover your eyes before crossing the street, don’t scream bloody murder when you get hit by a bus! When we finally recognise this, we could open our eyes and see the bus. Even if we can’t avoid it, at least we can see it coming…
It’s not that I don’t appreciate it when people try to make it seem better than it is; it’s just that, sometimes, all I want to do is wallow in self-pity.
If I don’t, this pandemic of toxic positivity will continue to knit a blanket that covers reality and suffocates us.
Allow me to unveil my reality: those diagnosed with HD have been estimated to be two to seven times more likely to commit suicide than a member of the general public; those having tested gene-positive have been observed to suffer significantly higher rates of depression, temper and self-harm than those who are genotype-negative; 100% of people who are gene-positive suffer with the knowledge that there is no cure…
But it’s only a 50% chance, right?
Even though that’s the case, it’s still a shitty statistic. If an orphanage burnt down and killed 50% of the children, would your first reaction be to say “But it’s only 50%”? No, there’d be posts plastered all over Facebook about how terrible the tragedy was.
My 50% chance is my tragedy.
Hence, I shall announce all my ‘shortcomings’ that Britain’s forced me to hide: I am a lesbian; I have ADHD; I love pineapple on pizza. That’s ignoring the possibility of adding Huntingdon’s Disease to my stamp collection.
So please stop obsessing over my big but. Instead, allow me to complain about how terrible my life is whilst you frown out of sympathy, nod slowly and zone out.