me, at an academic conference

I’ve been to a conference, feeling worthy, at the local university, on epatients, blogging and social media. It was about story telling and connection and sharing and learning and power imbalances. I spent days with amazing people, a peer amongst academics, and still got to sleep in my own bed and hug my little people.


I’d always intended to attend the event, but I was thrown by being asked to speak a week before. (I’d written a proposal months ago, and not considered it at all when it wasn’t accepted then.) Cue panic of research, sleep, more research, writing, sleep. I produced something and stopped writing when I got bored. I used some of my own story; I would use more the next time.

I often tell people about how all the stories matter, but appear to be reluctant to keep talking about my own. Do I think that ‘me as patient’ is too mundane to have any impact? Do I think ‘me as carer’ is out of date and the lessons have all been learnt? Oliver Burkeman’s article Why don’t we take our own advice? resonated with me. I’d encouraged one of the other speakers to apply, to tell her story, to share her experience, and yet I was freaking out when I had the chance to do so myself.

Marie on the power of stories in health, at a different event

Sally’s story from Saturday

My head is still buzzing. I have much to learn and relearn. I have ordered many books referenced at the conference. Fingers crossed my brain has the energy to read them.

How can we use stories to improve the system?

Work in progress…

not without my father


Our bloggy buddy Andra Watkins did something remarkable to promote her first book, and in the process she challenged her relationship with Roy, her dad. Not Without My Father is a result.

Andra walked the length of the Natchez Trace, as had her characters in ‘To Live Forever: An Afterlife Journey of Meriwether Lewis‘. She did the walking, took the pictures, wrote the blog posts, made the videos, dealt with painful feet and painful truths. Roy did the talking, selling of the books, and the farting. Not Without My Father tells their tales, wonderfully. There’s even a soundtrack- Elvis, Johnny Cash, Everything but the Girl, The Bangles… All the senses are engaged by this memoir. I loved it.

Both my parents are dead; this book made me pause many times to think of them, to reflect on differences, to miss them. I miss being annoyed by them, I miss the anxiety they cause. I miss just being able to hug them, and stop time.

This is not a sweetness and light memoir. Roy is maddening. Andra is suffering physically and wondering what in god’s name she’s doing, and why. (It’s so frustrating when the only person you can blame for a goofy idea is yourself.)

The story is told by Andra, and by her versions of Roy’s stories. She tells us about Roy beautifully, with love and empathy and understanding, all the while being mad at him. Because that’s what families do.

There are many characters in the memoir, supporting, selling, watching from a distance, travelling to be with her. Andra discovers unexpected community, as well as the complexities, difficulties and delights of the Trace itself.

As a journey of discovery along the Trace, looking for a father and finding adventure, ‘Not Without My Father’ is a companion piece to ‘To Live Forever’, but can be enjoyed without having read the novel in advance. But you’ll want to read the novel next…


I read an Advance Reading Copy of Not Without My Father.; I’ve also bought a kindle version, because this book is worthy of rereading. I’ve commented on To Live Forever & Andra’s journey here. Andra is the real deal. Don’t miss out.

in which change happened

This time last year I announced I was going to take writing seriously. I was going to write every day. That did happen for a little while. I did an online course, which I enjoyed but never quite got round to finishing.

Why? I’m easily distracted. I wanted something I felt I could actually have an impact doing. Writing a bit is fun, but it feels like additional to real business.

This year, the real business turned out to be talking, watching, reading and meeting. Learning from others, sharing my experience beyond the hardy bunch of wonderful bloggy buddies. (You have no idea how much I’ve been boosted, buoyed, inspired and entertained by you.)

Soo told me that twitter was full of ‘e-patients’ and that I might be interested in what they’re doing. In the world of rare disease, we know that patients often know more about their health than those treating them, but I’d not got to thinking beyond that. So I had a little explore.

e patient: enabled, empowered, engaged, equipped

Hashtags and twitter chats, an application for a European course to be a patient expert. The latter didn’t work out, but there have been many opportunities this year. I just had to look round me and see them. Our own Marie is a leader in the world of e patients. A real person, a bloggy buddy! It can’t be too alien then, surely? I found conversations, tweet ups, conferences, courses, books. Lots of ways of learning and sharing. And I got to meet Marie.

I had to develop the confidence in the validity of my own experience, my own voice. It’s not just about reading another article. I had to join in. I had to stick my hand up. I had to be brave, and use that voice. Some days I even had to get dressed and leave the house. Grand plans are one thing, anxiety is another…

I’m learning that I can make a difference. Each of us can.

Small steps, and we can make change happen.

Let patients help.