Understanding For Amy

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.

6 Responses to Understanding For Amy

  1. catherine says:

    Such, a sad, sad waste of life. I feel for her and her family, what a devestating blow. Now I feel that running a TA support group is vital for young people to meet others with TS and for their parents to meet others in similar situations also. Both you and Ruth are an inspiration to you, the way you have been able to carry on working in important roles. I too often get "talked down to" by people who don’t know me.

  2. Jellybean1 says:

    This makes me sad because it could so easily have been me you were writing about. The mental pain of being bullied and teased for something I could not control led me to suicide attempts on many occasions. Luckily I was never successful and I am now trying to look to the future, including writing a book about how badly I was treated by bullies in the hope it will never happen again. It is lovely that Amy got comfort from the group. Send hugs to her mum.

  3. AutisticMajor says:

    So sad to hear about this. I hope this was just a tragic accident and not another needless suicide.

  4. jazz says:

    It’s truly sad when things like this happen. I was in the same hospital when she died. And all i can say is that she was an amazing person who really wanted people to understand. There were many times we were talking about Tourettes and she really wanted people to understand. she was an amzing person and my thoughts are with her family

  5. jazz says:

    I’ll miss her very much. She was full of life and was such a wonderful person to be around. I’m so sad she’s gone but i hope her fight for people to understand Tourettes will continue.

  6. jazz says:

    I’m not going to lie when i first met amy i ahd no idea what tourettes was and though she was just being rude. but after a while she opened up and spoke about her struggle with it and how she had been bullied at school. at first i really struggled to understand and get on with her, but after a while and many converstaions i started to understand what she was going through. She was so kind and lovely. she was always making sure that veryone was ok. I was so sad to hear what had happened and it shocked us all at ticehurst. I hope no-one else has to go through what she went through all because of bullying and ignorance. she will be greatly missed. We all loved her. My thoughts are with her family and i hope they get all the answers they need. I don’t speak for just myself when i say that she was a lovely person. Everyone at hospital was so shocked and it’s broken our hearts. She will always be with us. I miss her so much, i just hope this never happens again and over time i hope her family will start to heal and get the answers they need. I’m so sad that her life ended like this. RIP beautiful amy. x

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