Sunday, 23 August 2015


Remember the film Total Recall? 

The one about a secret agent who has his memories altered. I mean the original one - you know, the 90s one with Arnold Schwarzenegger flexing his muscles and looking pained as he strained to remember things. Genius piece of casting, that, because Arnie always looks pained as he strains to remember things, in every part he ever plays. And in real life.
(Incidentally, on mentioning this to my husband, he displayed a very specific total recall of Total Recall, going a bit dreamy and murmuring: “Ah yes, there was a woman in that with three boobs. Three!”).

The film popped into my mind because I’ve been thinking about how my own memories have been altered.

Let me explain: when your child is diagnosed with Prader-Willi Syndrome, your world is turned upside down. I know I felt devastated, terrified, sad, confused, and angry. I know that, but I’ll never properly feel how I felt then, because my memories have been changed by future events. I’m not sitting in a darkened room, weeping beside a bed-ridden girl who can’t walk or talk, which was - in my post diagnostic madness - kind of what I envisaged life might be like. What I’m doing instead is telling my 16-year-old daughter to stop quizzing her brother about whether or not he likes spaghetti bolognaise, and laughing at her incomprehension at the idea he doesn’t find the subject quite as fascinating as she does. 

I can see my memories of those bleak first few weeks, but they’ve been drained of their power. I’ll never forget them, but they’re so much easier to look at, now they’ve got no juice left.

Six years ago, I imprinted some monster memories in my bonce when my daughter had two spinal fusion operations to correct scoliosis, and we suffered the agonising wait to find out if everything had gone smoothly and none of the nightmarish possible complications had occurred. I’ll never forget those memories. But they don’t have the clout, the oomph, the welly they had when they were being made, because everything turned out OK in the end. They’ve been un-clouted, de-oomphed, and welly-wanged.

Last year, there was another memory set (there always is). I thought a series of wild, sleepless nights would be carved into my brain forever as my girl was caught in the throes of a then undiagnosed mood disorder, causing her personality and behaviour to change dramatically. For a short, hysterical time, my sweet daughter did previously unimaginable things like turning tables over at school, trashing her bedroom, and swearing. Swearing, from the girl who, if she stumbles across a non-radio friendly version of a Jessie J song on YouTube, tuts: “Jessie, I’m surprised at you!”.

But getting the right professional help, and the right medication, miraculously turned the problem around, brought our girl back, and in turn has made those memories less visceral. 

I suppose what I’m trying to share is this: if you’re stuck in a place where you feel like you are just churning out a slew of bad memories, don’t panic.

Remembering a time you’ve been punched in the chest doesn’t hurt so much in retrospect, once you also remember how you got your breath back.

Song is PJ Harvey - The Faster I Breathe The Further I Go

This post first appeared in the latest edition of PWS News, the newsletter of the Prader-Willi Syndrome Association UK. They have a very informative website here.

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