Alport Syndrome

Alport Syndrome

My Analogy


 

Let’s pretend you’re at a party… and you don’t have a choice, you just have to be there… So you’re with your friends, having fun, getting loose and throwing mad shapes. All of a sudden, amid the shuffling bodies on the dance floor (empty lounge), someone’s eyes lock onto yours… their face warps as they squirm through the crowd towards you and when they arrive well-within your comfort zone they say, “Hi, I’m gonna punch you in the face, but I’m not gonna to tell you when I’m gonna do it.” They then scurry backwards and vanish amongst the oblivious disco dancers, leaving you wondering what the hell you’re going to do about it…

So… what do you do?

A: Escape the party and hide.

B: Put a costume on, pretend to be someone else and make out it’s a normal thing to do at a non-fancy dress party.

C: Stay put… pump your chest out… hold your head high… gather your friends… tell everyone what the cretin said to you… dance like a lunatic… make more friends… live for the moment… cherish your loved ones… grab life by its big hairy balls… do a handstand in the kitchen… do the limbo naked… do whatever you want to do because any minute now some twisted maniac IS DEFINITELY going to punch you in the face…

I chose C.

Because that’s pretty much how I’ve felt my whole life… Ever since I was old enough to understand that I have Alport Syndrome.

When I was a child, a renal consultant once said to me, and I quote:
“It’s a bit like a time bomb really, no-one knows when your kidneys are going to fail.”

Until now.

On 3 December 2018 (My birthday!), my consultant told me that my kidneys will fail within two years, maybe even by the end of 2019, at the rate at which they are declining.

Throughout my twenties, I struggled psychologically with the concept, because of the uncertainty of when they would fail. Most of the choices I’ve made in life have been orchestrated by sub-conscious effects of A.S. Although I find it slightly daunting, and even though it’s not a definitive deadline, it’s also refreshing to finally have a timescale on when my kidneys might fail. I’m very fortunate that my hearing, eye sight and kidney function have been closely monitored my whole life, and I’m extremely grateful for that.

So, I guess it doesn’t actually feel like a punch in the face… more like a constant, annoying and uncontrollable prod in the forehead.