Over the last seven days my amazing support team have offered their perspectives on Tourettes and on being carers. I’ve been touched by their thought-provoking, honest and funny accounts of their role in my care.
Bunny, Poppy and my sister all said they wished someone would write a post about them. So I’ve decided to do that.
What follows is an open letter to each of my carers. As well as being a chance to thank them individually for their support, I hope it’ll also help you get to know them a little better.
Dear Leftwing Idiot,
Where do I start in describing our friendship and the incredible difference your support makes to my life and to those of other people?
Most regular readers of this blog will get a sense of the enormous amount of practical help you give to me. But what might be less clear is the time and thought you invest in my emotional wellbeing.
The care you provide makes my life infinitely easier and more enjoyable. You’ve helped me face up to big decisions like moving house or getting a wheelchair as well as demonstrating your consideration for me in hundreds of tiny ways each day.
I notice and am grateful each time you add a bit of cold water to my tea so that if I spill it I don’t burn myself.
I appreciate the break from pounding my chest when you reach out and hold my hands.
I’m glad that you challenge me to stand up for myself and never let me get away with being lazy by doing something for me you know I can do myself.
I love your cavalier attitude towards kerbs when you’re pushing my wheelchair, and how much some of my tics make you laugh.
There are moments when we find each other overwhelmingly irritating or frustrating, but many more are filled with collaboration and laughter.
I know that sometimes the intensity of my support needs must put a strain on you, but I’ve never felt even a sliver of resentment.
I sometimes jokingly refer to you as a visionary but I’ve never really told you how incredible a lot of your ideas are. I’m constantly impressed by the originality and creativity of the things you come up with and feel very lucky to be able to work with you to make them happen.
Thank you for patience, humour and understanding and for showing me the value and creativity of my tics, and for challenging me to do everything better.
Dear Franish – Nemesis of the wheelchair,
I have utter admiration for the focus and patience you show in everything you do. This determination is evident in your relentless battle with my wheels.
I’m much more laid-back than normal after our days together – your calm approach to supporting me seems to rub off. You have a gift for making dreary tasks fun and turning hopelessly stressful situations around with humour.
Your playful approach extends to my tics and I enjoy your gentle attempts to try and influence them by repeating words or suggesting tunes to sing.
I remember the first time you helped make something tricky feel easier and more enjoyable. It was at Carnival a few years ago and I’d been keen to go but anxious about how it would work. You helped me up from the floor over and over again as we danced and laughed along with Leftwing Idiot and Poppy.
Since then we’ve enjoyed so many more lovely times together and your work with Bunny and Sophie creating Access Events means that loads of other people have opportunities to hear music, dance and share jokes in a vibrant, supportive atmosphere.
Your reputation as a warm, funny, and compassionate person preceded you. I knew of you through Leftwing Idiot long before we first met. You’d been friends with him for many years and I’d heard about the times you’d shared together.
We met in passing on a number of occasions but the first time we hung out properly was when I invited you to come and watch frogs having sex at the nature garden where I work. You embraced this unusual offer with enthusiasm and good humour, and I felt instantly that I wanted to be your friend.
I remember speaking to you on the phone soon after you Sophie and Fran founded Access Events. I was blown away by your ideas and the focused way in which you were making them a reality.
Other than Leftwing Idiot and my family, you were probably the first person to provide me with regular and intense support. Accepting this level of help as my mobility and independence deteriorated could have been upsetting, but your sensitivity and humour made it a joyful, rather than sad, process.
One of my favourite memories is a simple one from when we were staying at Leftwing Idiot’s flat together. He was away on holiday with Poppy and we were sitting opposite each other working at the kitchen table. We were quietly drinking tea and sharing chocolate as we worked until my tics claimed your speedy touch-typing was a façade and the calm gave way to laughter.
I love living with you. You’re an excellent flatmate and friend. You’re funny, creative, open and generally unflappable.
I think it’s fair to say the level of support Leftwing Idiot provides me would’ve daunted most people embarking on a relationship. But you’ve always been unfazed, understanding, and supportive.
Your energy and sense of fun means that hanging out with you is always a pleasure. You approach everything with a straightforwardness I really admire. This has been important in helping us build a strong friendship and I know I can trust you to say if something’s on your mind.
I love that there are some tics you never tire of even if you’ve heard them thousands of times before: “I’m a baby,” “Women,” and anything relating to “Mr Otter” spring to mind. Your clearly love it when I call out Leftwing Idiot’s name and then tell him to shut up. You always let me know when a tic is driving you mad, but you never expect that to change anything.
I’ve been lucky to benefit from some of your many talents. Thank you for every delicious meal you’ve made for us, and for the hours you’ve spent making me amazing padded gloves.
I was deeply proud when I saw the costumes you’d made for your degree show. You worked breathtakingly hard on them and the results speak for themselves.
Since we started living together a year ago we’ve shared many thoughtful conversations, relaxed evenings and impressive cocktails. I look forward to many more.
You’ve added loads of sparkle to the castle and I don’t just mean the hundreds of sequins.
You were the first person I really spoke to in detail about having Tourettes. I called the Tourettes Action helpline where you worked, nervous about discussing the uncontrollable movements and noises I was making. I needn’t have worried though – you put me at ease and helped me take the first tentative steps towards getting a proper diagnosis.
The first time I met you in person was at a busy Tourettes Action event. You took the time to speak to me and make me feel welcome. That evening is etched into my memory because as well as meeting you I also met Ruth for the first time. Neither of us had ever met anyone else with Tourettes before, and being introduced to Ruth helped make me more accepting of myself. This is just one example of how your intuition and thoughtfulness has helped me.
Dear King Russell,
You are quite frankly a legend.
I’m very proud to call you my brother-in-law and my friend. You take everything in your stride. You dissolve tension with your good humour and kindness and I’m pleased I had the opportunity to get to know you as flatmate as well as part of my family.
Thank you for all your help with the website and for the time and thought you put into keeping all the other technical stuff working so well.
Thanks for your graciousness when I descend on your home and for every time you’ve changed your plans at short notice to make sure I’m OK.
Thank you for patiently accepting the many accusations my tics have made against you over the years:
“Russell broke the shower.”
“Russell fell out of a worm hole.”
“Russell’s sexually compatible with aliens.”
“Russell had a love affair with your mum and Guy Ritchie.”
Dear Fat Sister,
There have been times when you’ve been so unfazed by my tics it’s left me baffled. However well other people are able to screen out the noises and movements I make, you’re the only person who seems not to see and hear them at all. I think it’s because we’ve both grown up with this strange and impulsive behaviour.
You do realise, not everyone gets bitten by their siblings at breakfast every morning, don’t you? And as far as I’m aware, it’s not standard practice for an older sister to run at closed doors like I used to. If I let myself think about my behaviour towards you when we were children I feel a strange mix of guilt and admiration for your resilience.
I know there have been times you’ve felt guilty too – particularly after you and King Russell moved out of the lair last year. Please don’t. You’re incredibly giving with your time and your love and I know that whenever I need you, you’re there for me.
I’m particularly fond of your laidback, and sometimes haphazard, approach to my care. You frequently point out that because you’re my sister you’re not bound by the usual conventions of good support work practice.
This is how we end up debating which of us is more stable when negotiating stairs in a pub. Or how I find myself on my back, being dragged by the ankles across your floor into a safe space when I’m having a ‘ticcing fit’.
There’s a long established joke that you’re my worst carer. I trust you know that, despite your sometimes-unorthodox approach, I appreciate every moment of help you give me. I feel privileged to have such a close and loving relationship with you and I couldn’t imagine life without it.
For the record, you’re an excellent carer and sister. I particularly appreciate your expertise as a sounding-board, first aider, emergency hotel, chauffer, raver, and murder mystery enthusiast.
In other words Fat Sister – you’re awesome!
Moving Beyond Gratitude
During the last week the posts written by my friends and family have touched me, but I was also moved by someone else’s blog about Carers Week.
The post, written by pseudodeviant, challenges us to move the conversation around providing care beyond one just of admiration and gratitude.
Her fantastic post unpicks assumptions and attitudes towards care and makes me realise that, as well celebrating the love and support I’m shown by those who care for me, I also have a responsibility to address the politics of care.
She asks us to get talking about the real issues facing disabled people and their carers and argues that we need to think more carefully about how we can:
• Improve access to support for carers and for the people they care for
• Pay carers a proper wage for all the hours they provide support
• Ensure real choice for the carers and the people they support
So, in addition to reading my letters of appreciation, please also read her post and undertake to reflect, discuss, and get angry about a system that leaves many people with little or no control over their support and leaves vast numbers of carers stressed, untrained and unpaid.