A big preoccupation right now is introducing Joe Faber to as many people as possible. So it’s really thrilling to see the Headway interview with Terry and myself online.
Headway is the brain injury charity which offers support through a network of local centres and its own rather lovely website. We were already fans of this organisation because of the help they continue to give an old friend who suffered a cerebral aneurysm.
Many months ago now, before the paperback was out, I was contacted by a reader, Sue, who’s a therapist working for the charity. At that point she hadn’t even finished the book, but she was enjoying it, and could see its usefulness to clients and their families – alongside all the excellent non-fiction which is available. I can’t express how much that meant to me: it was exactly what I’d hoped. Sue has been a tremendous champion, pointing me to the right contact, and the upshot is this beautifully produced article. Read Headway interview
A big aspect of the Headway website is its ‘share your story’ invitation. In an area where both the effects of injury and experiences of care are very varied, it’s always been important to share stories. It has never been more so than during the Covid crisis, when hospital visiting is not allowed. This puts huge pressure on already overstretched nurses, and it’s truly awful for the patients themselves as they start to recover and the realities sink in. But also, bluntly, brain injured patients are being discharged to bewildered families and caregivers who simply haven’t had the opportunity to learn at the bedside from medical staff. They haven’t even had the opportunity to come to terms with the changes in their loved ones. They’re shocked by what they find. They haven’t seen progress – which may come by minute increments – first hand, so they can’t see that the trajectory is a positive one. They may lack hope. If you’ve connected with, say, a facebook stroke supporters group, your will know what I mean – they have so many heartbreaking questions, and it’s not officially anybody’s job to check they’ve been answered. And that’s before you even start trying to understand things like discharge procedures and the social care system. Add to that the stress of managing care alongside home working and home schooling, and people are in despair.
I will never forget how simultaneously thrilled and terrified I was when my husband came home. And I was well prepared! I’d picked up so much along the way, and benefitted from multiple short but meaningful interactions with the nursing staff, who had a conceptual framework for all this which I lacked. They were able to say, this is normal, this is a good sign, this is what we do. Before discharge I was able to get them to show me how to make Terry comfortable in bed, and physios taught him how to get in and out of a car. Admittedly, he hadn’t mastered the Zimmer at that stage, and I hadn’t grasped the basics of manoeuvring a wheelchair beyond the smooth flooring of a hospital. This is nothing compared with what people are facing up to now. There is so much to adapt to, and it all takes time to sink in. The awful thing is that every jar and every little hurt or scare can resonate for hours, even days, in the lived experience of a seriously weakened person. Essentially you’re bringing home a newborn – because yes, this person has literally been born into their second life – but a newborn who has an adult identity to protect, and who doesn’t fit in a cot.
Headway, Stroke Association, Carers UK – all deserve our support.