Sunday, 3 May 2020

Day Eight

My hour-long daily dog walk gives me time for some deep contemplation about life and the beauty of nature. Although this morning I had to pick up a labrador turd from next to a dead pigeon, so, there’s that.

It was a fragrant start to what, by my calculations, is the 42nd day of UK lockdown measures, and Day Eight of my charidee blogathon. Only Day Eight and I’m writing about dog poo. God help us all.

Yesterday I spoke about food, and the insatiable appetite that affects people with Prader-Willi Syndrome. 

Today, it’s another biggie - emotional immaturity.

I’m not talking about simply having a short fuse, like my brother did when we were kids and I used to be able to make him lose his shit instantly, with one laser-targeted insult. It was as easy as snapping my fingers, which was ironic, as he did, on one occasion, snap my finger. And burst a blood vessel in my eye when his wild attempt to give me a dead arm missed and connected with my eyeball instead. He’s a police officer now, which I hope you will find reassuring.

No, the kind of emotional immaturity I’m talking about is the PWS person’s inability to understand and control their emotions. 

The loss of control can take different forms: ‘temper tantrums’ more akin to a toddler’s; violent rages (a hefty teenage boy with PWS who has had testosterone supplements can be a frightening, unstoppable force); or sobbing meltdowns.

My girl’s speciality is the latter, a wave of crying that comes over her - sometimes with an obvious cause, sometimes not - that you have to sit and wait out, as while it happens she is oblivious to anything you are saying. You know, like how your mate got after she came round and drank two bottles of merlot after that terrible break-up and then just wouldn’t stop, despite you telling her she was better off without the bastard. The only difference with my girl is that when the tide rolls back and she stops crying, she suddenly clicks back to normal, as if nothing has happened. Not like your mate, who will spend the next half hour telling you she bloody loves you. And then puke.

The flip side of my daughter’s emotional meltdowns are that when you think she might have one, she won’t. When my mum, her beloved Nanna, died, she informed me that she felt like she should cry but she probably wouldn’t. She doesn’t understand emotions, even if she sometimes gets the theory of them, she can’t always recognise what she or others are feeling. 

Today, the feels are good, though. My daughter is curled up on the sofa watching a 1994 film adaptation of Black Beauty, happy and fascinated and not questioning the logic of a horse whose inner voice is narrated by Alan Cummings. My boy is near me, but not needing my immediate attention, as he is lost in the world of Minecraft. So I’ve been left alone long enough in daylight hours (for 42 minutes to be precise) to listen uninterrupted to an entire LP (a rather splendid pink vinyl copy of St. Vincent’s Masseducation). Although it may now have a scratch on it from where I was a bit clumsy leaping up to lift the needle when I remembered too late that the chorus to 'New York' contains not one, not two, but three perfectly enunciated ‘motherf***er’s.

https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972



Song is St. Vincent - New York. You're all right if your kids are listening: this version says 'you're the only other sucker'. I mean, I prefer the sweary one, but I thought I'd treat you to the catsuit.

As part of the 2.6 Challenge (which is asking people to fundraise and donate towards small charities that are threatened with closure because of the effects of the Covid-19 crisis) I'm currently writing 26 blogs in 26 days.The PWSA UK is a charity which is absolutely vital for people with PWS, their families, carers and professionals who work with them. Without urgent help, PWSA UK will fold. This charity saves lives and for some people makes lives worth living. If you can, please go to my Just Giving page. All of you who have donated 26p, £2.60, £26 or any other amount are awesome motherf***ers, sorry, suckers.

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