Courage, Story-telling and Community!

paulo-coelho-courage-love

I have read and listened to four health-related stories this week, all very different contexts but with one powerful connection: courage. The stars of the stories each show incredible courage in both their responses to the cards they have been dealt and also in sharing their stories with us.

Stories inspire us, give us hope, give us perspective and insight and are a gift to be respected and appreciated.

The first story was shared in a blog post written by Anne Cooper (@anniecoops), who always produces thoughtful emotionally intelligent pieces, often breaking open subjects that need a good airing and this was certainly one of them. Anne wrote about ‘the Big M’, the Menopause. Although it affects half the population, Anne states: ‘it’s one of those taboo subjects that no-one talks about’. Anne shares with us her experiences of what she thinks might be the initial symptoms of the ‘Big M’, it’s potential impact on diabetes and of how conversations with her peers are helping her to feel better and get back on top of things. Sharing something this personal that is a ‘taboo’ subject in an open social media space takes courage and I believe has a significant positive impact on others as was shown by the animated twitter threads prompted by the post.

The next story was shared by ShipShape Sharrow, a community organisation in Sheffield, through the medium of video filmed by FunMeFit for Move More Sheffield. These four clips tell a story which begins with Karen and Don, two community activists who both live with chronic pain. Karen and Don, supported by ShipShape Sharrow, have set up a swimming group for others who also live with chronic pain. Janice, Alison, Jonathan and Yvonne tell us their stories of how becoming part of the group is transforming their lives and their health. Karen and Don explain the background to the group here. 

Janice shares how she lives with multiple conditions including anxiety and how becoming part of this peer group has helped her make new friends, relax, exercise and come out of her shell. When asked what she would be doing if this group didn’t exist she quickly replies “nothing, stuck in the house doing nothing”. Sometimes taking that first step over the doorstep can take enormous amounts of courage.

Yvonne tells how she has become part of the group to manage her pain, get healthier and socialise. She says “until I met this group of people I felt really isolated with the condition that I’ve got”. She goes on to explain that since starting the group 10 weeks ago she can now walk. Before the group she could not!

Alison, alongside her son Jonathan, describes how she has had two attempted suicides and struggles with chronic pain, anxiety and depression and has a lot of ‘caring problems’. She shares how becoming part of the group and going swimming gives her ‘the feel good factor’. Alison explains the impact of peer support for her: “It’s difficult to talk to people who don’t have pain about it …If you have chronic pain yourself and you talk to someone else with chronic pain you get that understanding and they have helped me tremendously….They’ve done me wonders…Its been brilliant, I can’t thank Don and Karen enough”. It’s early days for Alison but what really touched me was how when Alison bravely talks about future positive steps, her son leans over and affectionately and gently hugs her.

Each of these people is taking enormous steps to try to overcome the challenges that chronic pain, anxiety and other conditions present to them and not only that but they share with us with great honesty and courage their journeys so far.

The next person whom I was privileged to meet just before Christmas is Kate Allatt (@kateallatt). Kate is founder of ‘Fighting Strokes’ and, my goodness me, she knows a bit about that! I’m not going to tell you her full story as I want to encourage people to buy her book entitled “Running Free” which I went home and bought the day I met her. After suffering from a brainstem stroke, Kate went from being a fell running super active mother-of-three to becoming totally paralysed with locked-in syndrome. Against all hope, eight months later she walked out of the hospital and not only walked but ran again. She now dedicates herself to stroke recovery and travels the world sharing her inspirational story to help others.

Finally, I read a story published by the Guardian which prompted me to write this post about courage, story telling and community. A story written by the brave Mother of an equally brave young woman, Kate Gross who died of cancer on Christmas morning leaving a husband and five year old twin boys. Jean describes how her daughter has written her story in a book ‘Late Fragments’ so that ‘her sons would one day discover who she was and what she held dear’. She shares Kate’s wise words ‘everything has changed and yet nothing has changed. In other words, the petty frustrations and stupid ambitions and general rushing around have melted away, but the good stuff remains. And it’s better than ever’. Jean finishes her story by saying ‘I’ve learned that there is more love in the world than I ever knew and that perhaps all we need to do is learn to ask for what we need”. There is so much we can all learn from the stories told by both Jean and Kate.

All of these people are full of courage in so many ways and they are generous and brave in the way they have stepped forward and shared their stories to help others around them, in their communities and beyond.

Thank you Anne, Don, Karen, Janice, Yvonne, Alison, Jonathan, Kate, Jean and Kate.

In case you missed the links in this post…

Anne Cooper’s blog ‘The Thoughts of a Nurse with Type 1 Diabetes’ and post ‘The Big M – more taboo subjects’

ShipShape Sharrow website

Don and Karen’s youtube clip about their Chronic Pain Community Group

Janice’s youtube clip 

Yvonne’s youtube clip 

Alison and Jonathan’s youtube clip

 Kate Allatt’s website, book ‘Running Free‘ and Charity Fighting Strokes 

Jean Gross’s story published in the Gaurdian on 10 January 2015 ‘Farewell to my daughter Kate who died on Christmas day’.

Kate Gross’s book ‘Late Fragments’ 

Health related story telling information resources:

Patient Memoirs: A site where patients can upload videos

Power of Story Telling by the Innovation Unit

Digital Story Telling by Marie Ennis-O’Connor on Healthcare Social Media

Other related posts I have written:

Blogging: digital led therapy 

65 Patient and Citizenship blogs

Gardeners of connected communities 

Advertisements

Diabetes Glass Half Full…

164436860

Glass half full….

Living with type 1 diabetes since I was 27 has given me a sense of ‘Carpe Diem’, seize the day, make the most of every moment. People also ask me how I fit so much in, where do I find the energy and sometimes I tip the balance, but I am driven by that zest for life that comes with a realisation of mortality!

Coping with diabetes has given me empathy and awareness, meeting the physical and emotional challenges of adapting has given me strength and resilience. I have met wonderful new friends and have changed my direction of travel at work to one where I hope my personal experience and passion is helping me to make a difference.

There are some important factors which help me to live well with diabetes including being well informed, feeling confident and in control of my health and life and feeling connected and being supported by my family and friends. Completing the DAFNE course (dose adjustment for normal eating) http://www.dafne.uk.com/ made a big difference too, an opportunity I believe should be offered to every type 1 diabetic and could be delivered by (paid) expert patients! 

I generally take far better care of myself than I did pre-diabetes, drink less, exercise more (although could do better on both of these accounts), and I am generally more self and health aware.

Best of all, as any woman who has had diabetes before and during pregnancy will tell you, the emotional turmoil and physical discipline which goes into having a baby has made me absolutely treasure my two wonderful and thankfully healthy children and made me consciously feel great appreciation of them every day!

So whilst it is sometimes hard living with diabetes, (I would like a day off of calculating carbohydrate portions, injecting and monitoring every now and again) and yes, the future is uncertain, (it is a joke in our house that diabetics are at a higher risk of everything on the planet), the negative stuff is not the whole picture. Actually with the disadvantages also comes some precious gifts, especially valuing living and those around you.

I think we (in healthcare) tend to view long term conditions as a deficit, always talking about the costs, the complications, etc but I just wanted to share that actually there is another more positive dimension to diabetes.

Would love to hear from others with long term conditions on the silver lining for them….