I’ve written many times about the importance of increasing people’s understanding of Tourettes and about my mission to ‘Change the world one tic at a time.’ But never before has this felt so important, and never before have I wished the world could’ve been changed more quickly.
At the beginning of last summer my friend Ruth organised a Tourettes support group meeting in a pub in North London. It was here that I met Amy, a bright, chatty thirteen year-old with a lot to say. Amy’s warmth and sense of humour immediately made a big impression on me.
Amy hadn’t met anyone else with Tourettes before and she was eager to learn about other people’s experiences. I remember her mum explaining the difficult time she’d had at school due to her tics, and how she wasn’t always shown the understanding she deserved. Amy wanted to understand more about Tourettes from different perspectives and I enjoyed her curious questions, and her company.
When I left the pub that afternoon I remember hoping we’d meet again.
It’s with deep sadness that I now know this will never happen.
A week ago Amy’s mum got in touch with Ruth and me to let us know that Amy had died. She was fourteen.
Amy died while being assessed as an inpatient at a hospital unit where she’d been placed following her exclusion from school. She was there so doctors could get a better understanding of her difficulties. It was in her room at this hospital unit that she was found with a scarf around her neck.
Paramedics were called and they tried to revive her. She was taken to a different hospital, but she died the following morning as a result of severe damage to her brain.
Over the last week my thoughts have repeatedly turned to Amy and her family. Whenever a young person dies it’s intensely sad for all concerned, but it’s particularly devastating if it seems their death may have been preventable.
I don’t know the full circumstances of Amy’s final hours but I do know that fourteen-year-olds should not die as she did – there are too many unanswered questions. An inquest will be held in the New Year and I very much hope her family get the answers they’re seeking, and that other children will be better protected in the future as a result.
When we met last year it was already clear Amy’s life was much tougher than it needed to be because she had Tourettes. I remember her saying that other people often misunderstood her verbal tics and thought they were directed at them. Speaking to her mum last week it was incredibly sad to hear how this had continued.
I know how hard it is not being in control of your own body or of the words coming out of your mouth. I also know about the constant worry caused by tics and how they impact on other people, as well as the frustration of being judged as rude or naughty.
Her mum described Amy as being ‘Sensitive to other people’s pain’ and I remember how much care she took at the meeting in the pub to make sure everybody was included and had someone to talk to. It’s upsetting to think she wasn’t always extended this same compassion by those entrusted with her care.
Lots of people think they know about Tourettes, but very few really do. It’s a complex condition that affects people in different ways. To understand this, you really need to listen. I’ve met far too many children and families who’ve described their frustration at not being heard – this isn’t just unacceptable, it’s dangerous.
There have been plenty of times in the last year when I’ve been extremely vulnerable and not able to speak for myself. It’s at these times I’ve been most aware of how important it is to have a strong advocate.
I remember one of the paramedics who took me to hospital during a particularly long and exhausting ‘ticcing fit’ asking which day centre I went to. She was being caring and professional but she’d still made a judgement about me based on my tics. I was so relieved to hear Leftwing Idiot explaining about my job and about me as we sat in the ambulance. I knew he was looking out for me and that he wouldn’t let anyone lose sight of my needs.
Sadly, even with a strong advocate, damaging judgements can be made very quickly. Amy’s mum fought hard for her daughter while she was alive, and she continues to do so even after her death.
I’m sharing Amy’s story to show how crucial it is to take the time to understand other people’s differences. I spoke to Amy’s mum a few days ago and she told me she thought Amy often suffered as result of people’s poor understanding of Tourettes.
When I talk about increasing understanding, I imagine lots of people think about how this helps in public, like on a bus for example. But while understanding from strangers is certainly important, it’s the people we see every day who have the most responsibility to understand us and it’s particularly important when it’s a person in a position of authority, like a teacher or a doctor.
If there’s ever an occasion when you’re tempted to make an assumption about someone who appears to be different, think of Amy and take the time to make sure you’re not misjudging them.
I’m so sorry that no one else will ever have the opportunity to be touched by Amy’s exceptional spirit. She was very much loved and will always be deeply missed.
In loving memory of Amy El-Keria.
This post is written in blue because it was Amy’s favourite colour.