The Royal Liverpool Broadgreen University Hospital Trust has commissioned The Reader to deliver a regular Shared Reading group for patients with chronic pain at Broadgreen Hospital since 2013. The group is currently led by volunteer Reader Leader, Helen, who has lived with chronic pain for over 20 years. She talks to us here about how Shared Reading has changed her life.
I was about 16 years old when I first noticed that I had some back pain but I was working as an auxiliary nurse and just put it down to being on my feet a lot and the nature of the job. It wasn’t until my twenties when I had completely changed careers, after going back into education and doing my A-levels and a degree, that I realised the pain was becoming unbearable. At the time I had landed my dream job of teaching and was working as a supply teacher while I completed my Masters in education.
When I went to the doctors I expected them to say it was something like arthritis as that ran in our family but I was totally shocked when they told me I had a tumour in my pelvic bone. Even then it took a while to get it properly diagnosed. That diagnosis took away everything – I couldn’t teach anymore because I was on so many medications that I didn’t feel I could be the teacher that I wanted to be, the teacher that the children deserved.
I absolutely loved teaching and I had worked so hard to get there. Giving it all up led to a very dark time for me. I was in a lot of pain and even when I did leave the house because I was on crutches or in a wheelchair, it was very difficult to get anywhere. I got to the point where I rarely left my house and the only people I saw were my family and medics. I didn’t realise how isolated I had become and I got very anxious when I thought about going out in public.
I heard about Shared Reading through my chronic pain clinic. At the time I was feeling very lonely. I’d lost some friends because people just didn’t know what to say and so the thought of going along to a group with other people who understood what I was going through was very appealing. I had also found that reading helped with the pain – it didn’t take it away but while I was reading I could disappear into a book – the book became my focus not the pain.
I’ll never forget the time we read the poem ‘The Road Not Taken’ by Robert Frost, it just spoke to me because it was everything I had been through and it was showing me that I could rebuild again and that I would have the strength to take another path. At that time I had felt that all I was was a tumour and that being Helen came second to that but through being part of the group I started to feel like Helen again.
Funnily enough as a group we don’t really talk about the pain we go through. We are all in pain for very different reasons but just knowing that we understand what it is like – the trudgery of it, how exhausting it is, the impact on our mental health – is enough. It is a shared bond and after years of being together, we are a family. If I’m having a rough day, they are there for me. We also share things in the group that we probably wouldn’t share with our nearest and dearest. It’s through the literature that we talk about how it relates to our life and I find it easier to open up that way.
During lockdown many of us were completely shielding and it stayed that way for two years. I was determined to carry on the group so arranged for people to join a session on Zoom. It became a real lifeline and during that time I also started leading the group as a Reader Leader. It gave me something to look forward to, as not only did I have the group session to take part in but I was responsible for preparing the sessions as well. It’s really helped me build myself back up and I feel as a volunteer I’m able to give back what Shared Reading has given to me. Now we meet in person and online.
Through reading with others as part of my Shared Reading group I have been able to see a way ahead and it has given me the confidence to start to live my life again. I owe my life to that group and Shared Reading.
I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference.
From ‘The Road Not Taken’, Robert Frost
