The Lost Tribe – Stories from Survivors of Cauda Equina Syndrome
Running an online support group helped me see just how powerful positive stories can be. Stories of resilience and determination. Stories of people learning to adjust to life after Cauda Equina Syndrome, returning to work, rebuilding their confidence, and maintaining meaningful relationships with the people they love.
Whilst working on the charity helpline, I realised not everyone could or wanted to access Facebook. But by not being in the group they were missing out on the most valuable information – shared lived experience. Access to this information meant real help for those on the difficult quest for answers. I knew I needed to find a way to share this information more widely, and make it accessible outside the online group.
As has been the case so many times before along my journey, I was to meet someone who would provide me with a solution.
For CES Awareness Day in 2021, we created an online CES Festival. We asked Mr Mecci, Consultant in Spinal Rehabilitation at the Golden Jubilee Spinal Injuries Centre, Middlesbrough if he would present his thoughts on best practice for CES patient rehabilitation and share them with our attendees.
I listened to Mr Mecci’s presentation as it was filmed, his powerful words describing CES patients as a “Lost Tribe” really resonated with me and were so very true of our community. These words inspired me for the title of a book I had long been mulling over and fuelled me into collecting stories from brave members of our group. These people, who despite having their dreams for the future shattered by CES, had found ways to overcome this and carve out new purpose and lives for themselves.
When you are newly injured through Cauda Equina Syndrome adjusting to issues such as continence problems, changed mobility, chronic pain and sexual dysfunction can be terrifying and overwhelming. I wanted to show people life wasn’t over, and that they could find happiness again. Equally, it was very important to provide a resource that could be shared with family members and healthcare professionals, so they could truly understand the impact of CES and be better informed to support people affected by it.
Every person who bravely shared their personal story in this book is an inspiration to me. Their words are a source of comfort and validation for so many people facing a new life with Cauda Equina Syndrome.
When we released the book, it quickly reached No. 1 in the Living with Disability category on Amazon books and received some wonderful reviews – you can order a copy here, all proceeds go to Cauda Equina Champions Charity.