‘She won’t make it through the night.’ Turns out those seven short, sharp words weren't actually true.
Until 2011, I lead a busy, happy, life as a wife and mother of two teenagers, working full-time as a judge. I was fully independent, fit, healthy and training for the London Marathon. And then on the 8th September 2011, in an instant my life was changed forever.
I collapsed with a subarachnoid haemorrhage, after a giant aneurysm ruptured. My husband was told I wouldn’t make it - and although I lay in a coma for two weeks, teetering on the brink of death, I came to, and my new life began!
A new life with a severe brain injury. I was mostly blind in each eye, and half-paralysed with a host of significant life-changing health problems. I didn’t see any professionals for six months, felt alone and lonely, and at times wished I hadn’t survived.
I believe that brain injury survivors absolutely need to meet people who have experienced what they’ve been through and that survivors feel most at ease with other survivors.
But then, in summer 2012, I went to a Stroke Association forum, and met my first other ‘subarach.’ He had no family or friends, he’d had no treatment, so I befriended him and took him out for a weekly lunch. When the sensory loss representative at the council heard about this he said ‘can you help a lady with hemianopia who needs support?’ From that point the Royal National Institute of Blind People, Stroke Association, and Wessex Neuro referred people to me for support. It started in Hampshire, but soon I was also travelling to Dorset. I’ve now looked after 20 people, and named my group Hants & Dorset haemorrhage and hemianopia support group.
I believe that brain injury survivors absolutely need to meet people who have experienced what they’ve been through and that survivors feel most at ease with other survivors. It makes all the difference not having to explain why you are fatigued, what it feels like or understanding when background noise becomes too much to even think.
Eight years on we still meet for coffee every month and I’ve hosted afternoon teas at home. I still go to hospital appointments to help buddies ask the right questions, to access the right treatment, to assist them with Personal Independence Payment and Employment Support Allowance applications and by going with them to assessments. We’ve also worked together to find suitable voluntary work which helps them enormously. Most importantly, by becoming their friend, I hope I can make their lives a little more bearable.
Now, as a trustee of the Brain & Spine Foundation, I have a vision to create a network of support groups throughout the country so that no one feels alone post haemorrhage. The Brain & Spine Foundation SAH Facebook Group works fantastically with online support, but it’s the bringing together of people who have real-life experience of this life-changing event in person which helps heal the most.
My group is filled with laughter, love, respect and humour and it is relaxed, with no expectation and full of mutual support. We learn so much from each other. So be brave, give it a go, help set up a group or attend one – it could be the best thing you’ll ever do after your diagnosis!