Today’s post is written by Bunny – it’s the third of seven guest posts I’ll be sharing to mark National Carers Week.
My name is Bunny (aka “Bunsies”, ticced suggestively in a frisky old man voice).
I first met Touretteshero several years ago, before she discovered her superhero powers. We became close last summer – during the “I’m a baby!”, “I’m a square!” era – when I started accompanying her to work on Mondays and Tuesdays. Tellingly, I feature in this blog mostly in connection with comedy spillages and fits of laughter.
My job as Touretteshero’s support worker begins when I pick her up from home in the morning and travel to work with her in a cab. At work, I type her dictated emails and documents, I support her physically as she moves around the office and I try to make sure that she doesn’t hurt herself during ticcing fits. If she goes to meetings, I go with her. If she takes the day off work and goes to a spa with her family, I thank my lucky stars that I work Mondays, and go there with her too!
Sometimes, when I’m supporting Touretteshero on a weekend, we like to go shopping in town. Touretteshero makes a good shopping companion because, like me, she quickly tires of actual shopping and needs regular breaks to refuel. Once, we went to Knightsbridge in search of underwear and decided to have a browse in Harrods, as you do. We found that although the store had ornate lifts to all floors and marble accessible loos, the women’s clothing section had certainly not been arranged to facilitate wheelchair access. The clothes rails and display tables were spaced just shy of wheelchair width, forcing us to take surreptitious action. To move across the shop floor I darted ahead to drag clothes rails out of our path and Touretteshero nudged tables away with her feet. “We’re rearranging Harrods!” she tic-announced happily. Nobody stopped us. Nobody stops a pair with a wheelchair, I’ve noticed. This can come in handy!
During a ticcing fit later in the day, we ducked into another overpriced shop to get out of the cold. Whilst we were in there, the fit stopped. We took a tiny lift to the first floor, which opened one way to get in and another to get out. We discovered that as cool as this sounds from a quirky feature point of view, it’s not so great from a wheelchair user’s point of view. The lift was filled with dazzlingly bright lights and, as I endeavoured to perform a three-point turn, Touretteshero shouted, “Help! I’m stuck in a spaceship!” Safely back on the street, Touretteshero observed that as far as the security guard on the door was concerned – he’d eyed her with alarm as she came in fitting, and then with amazement as she left serenely – some kind of magnificent healing had taken place.
Mostly my job’s an absolute pleasure. It’s a luxury to be paid to go to work with a friend, a treat to have someone to chat to on my lunch break and an unusual privilege to be constantly creating happy memories that straddle my personal and working life. However, on days when Touretteshero is unhappy, stressed or rushed, I too become all of those things. In addition, I worry that I could be supporting her better and easing her distress more effectively.
A challenge unique to supporting or, indeed, being supported by a close friend is learning how to embody both elements of your relationship – being able to provide or demand a high level of support when appropriate but then also making time just to be friends, outside of any formal support arrangement. For the most part, I think we do pretty well at this, thanks to Touretteshero’s open and honest communication. If something does go awry, she’s always quick to detect the problem (an essential superhero quality, I suppose) and insists that we talk it through to a resolution.
After a lot of soul-searching and a ruthless elimination process, I think my favourite tic is “Marmoset.” I love the way it’s ticced and I love the animal in question. I like that lots of people don’t know what a marmoset is but are inspired by the tic to go home and look it up. Touretteshero: promoting wildlife awareness since 2010.
Photo: Sam Robinson