This is the first of seven guest posts to mark National Carers Week. This entry is written by Leftwing Idiot.
I first met Touretteshero in 2000, long before her tics were obvious to anyone but herself and her family. Since then we’ve worked together on various projects supporting disabled children’s right to play and celebrating their creativity. Along the way we’ve become close friends, even if we do bicker like siblings given half a chance.
It was during a particularly challenging time at work several years ago that Touretteshero’s tics became more apparent. I was puzzled and amused by the strange noises and movements I’d started noticing her making.
I don’t remember exactly how, but I discovered that if I asked her what noise a dog made, she’d woof involuntarily in reply. We’d always had a playful banter-filled friendship and this new element felt like gold dust.
Both of us were under a lot of pressure from the organisation we were working for and we’d been called for a meeting at their head office for a grilling. With the meeting looming I discovered I could ‘programme’ Touretteshero to say particular things just by repeating them to her a few times. Making her say something extremely rude about the woman we were due to meet seemed like an excellent idea at the time.
To my surprise we both survived with our jobs intact and as her tics became more and more prominent, the joy of exploitation gave way to a desire to find out more and to help. Several years later, this process of discovery is still on-going.
With the benefit of more knowledge and experience of Tourettes, it’s safe to say I’m not proud of my initial response to my friend’s emerging tics. However, then as now, I recognised humour as being the most important tool for staying upbeat about the challenges they bring.
Once she was finally diagnosed, I was quietly surprised that Touretteshero should have what’s often seen as a ‘joke’ condition. We watched an episode of South Park about Tourettes together, which coincided with the diagnosis, and we chuckled like a couple of naughty children as she repeated back the noises and words coming from the TV. We’ve been sharing this laughter ever since.
That being said, it’s been a hard process seeing a close friend struggle with her deteriorating mobility, and reduced safety and independence. Each punch to the face or sudden drop to the floor makes me hurt in empathy. There have been times when I’ve found myself burning with rage at the injustice of it all. Why should someone as kind and thoughtful as Touretteshero end up having to deal with seemingly endless ticcing fits and hostility from strangers?
The anger fades when I see the amazing commitment she makes to rising above the challenges her tics bring and unstintingly giving to others in every aspect of her life.
There must certainly be elements of her condition that she would choose to lose but Touretteshero isn’t looking for sympathy or for a cure. She’s too busy getting on with her life for that.
Offering my care and support feels like a natural extension to the consideration I’d extend to any friend in need. As Touretteshero’s needs have increased it’s undeniably become more challenging, complicated and exhausting for all involved.
Fortunately she’s refused to be defeated and has worked hard to build the necessary support into her life to meet difficulties head on. It’s because of this approach and because she’s never stopped laughing that I know for sure Tourettes isn’t her problem, it’s her power.
It’s hard to pick a favourite tic – there are so many to choose from already, not to mention those yet to be said, but, ‘Aim your dog at the moon’ has lodged itself in very deeply.