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‘You can’t pay for this’ – Patricia’s Story

Written by Rachael Norris, 17th October 2019

Patricia is a regular at a special Shared Reading group at her local hospital, for people living with chronic pain. In her Reader Story, she tells us what finding the group, and the literature shared here, has meant to her.

I was diagnosed in 2006. Then had a relapse in 2008. That meant 14 months in and out of hospital and a transplant in 2009.

My whole life froze in front of me. I was a working mum of two – I was always very active, there was nothing that I couldn’t do. This affected everything.

You’re working all the hours you can, not seeing your kids – and you suddenly become useless. I became a different person. My kids became my carers, which was hard for me to deal with. I felt like I’d taken their childhood away from them.

Don’t get me wrong, they’ve turned out brilliant, but I know they didn’t like leaving me on my own. And the side effects of the treatment were exhausting. My life revolved around hospitals. I struggled for years with pain that I hid behind a mask. ‘I’m ok’ I would say. And I cracked jokes to cover it all.

I’d isolated myself from my friends. I’d become boring. You start saying ‘no’ to everything. I was hiding away and was scared if I broke down emotionally, who would pick me up? I was laughing on the outside but I wanted to scream.

I was isolated in my own little world. I knew I was missing something. I’d been to various different types of groups before, and I was sure it worked for some people, but I needed something that I needed. Then, I met a lovely lady in the waiting room. ‘You need to join our group’, she told me. ‘You’ll love it’.

I’ve got to be honest – I was still a bit dubious. ‘Am I going to walk into something that’s not for me?’ I thought. I was so scared. I couldn’t pick up and read a whole book on my own – I’d just get distracted and go back to the pain. Then I got a phone call from The Reader – which really reassured me. ‘I fidget,’ I said, and they told me I could stand up, sit down, whatever. Every part of the group was so different from anything I’ve ever been to. When I walked in, everybody introduced themselves by their first name. And it was a really mixed age group.

No one focused on my condition. Even though I talk about it – I didn’t want that to be the first thing. The group gives you the chance to open up, in your own way. You can laugh and you can cry.

It’s different because you break during the reading, it gives you time to absorb the information. You get involved with the characters, these people’s lives in the book – and the group – and can put them into your own life. I can tell my story – and everyone
has theirs. It gets my head focusing on other things, like that Timothy Gedge (from The Children of Dynmouth by William Trevor) – he’s got me on edge. He gives me sleepless nights. I want to love him. I want to guide him in the right direction.

For the first few months in the group, I was sticking with being the joker. It’s so difficult to trust people. But I was terrified if I spoke out in school – the good thing with the group is, you get the option.

It’s built my confidence to read aloud. The first time, I was nervous as anything. I couldn’t see the words in front of me. ‘That’s brilliant,’ the Reader Leader said. They gave me that encouragement.

I am able to be myself in the group, able to open up and talk openly and honestly. Everyone listens to and respects each other. You feel you can talk here. I’m here; this is happening in this room. It stays in this room.

Sometimes I don’t want to get out of bed but I want to get up for this. I want to come here. The book brings that different side of you – a different way of expressing all this. At Christmas, one of the kids asked what I’d want from Father Christmas. ‘Two hours pain free,’ I thought. Of course, I didn’t get that. But he did give me this group.

It’s a different way of dealing with pain. It’s a lonely world otherwise. My theory in life – there’s always one positive thing each day. When I had the emotional breakdown, I was in a dark place and that wasn’t me. This group is my one positive thing. And I see hospital very differently now. I look forward to it.

‘Mum, it’s the happiest I’ve seen you in years,’ my daughter says, ‘what are these people doing to you? Don’t you give up!’.

It’s everything you’re looking for: stories, reading, poetry, people, laughter – you can’t pay for this. And I’m sure it doesn’t work for everybody, but it’s what I was missing. Give it a go. I was you. All you can do is try it once. I love it.

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