Originally published on www.headwaynorthlondon.blogspot.com
I was sorting out some electronic files on my PC at home last night, and I came across some pictures of my first wife. She died nearly five years ago now, having succumbed to a brain tumour. There aren’t many days that go by that I don’t spend at least a moment thinking about the eight years she had with that lump in her head and not only thinking about her as a person but the process we went through during that time.
Conversely, I don’t spend any time trawling through photographs that were taken during her last couple of years, but they are on my PC, kept for a reason I don’t really understand and cannot express, but the sight of them was shocking.
She was a perfectly happy, open, care-free, friendly person, and an experienced and well-liked teacher of 32 when she had the first epileptic seizure in 2000, which threw her out of bed at six in the morning. She’d had migraines in the past, and the following couple of years saw her going in and out of hospital for monitoring, scans and tests. At this time, the experts suspected that the brain scans were showing a ‘benign cyst’, but continued tumour growth and persistent niggling problems with aches and odd thoughts and visions lead to a biopsy in 2003 which diagnosed a grade 2 astrocytoma deep in the right side of the brain.
With the biopsy came brain injury; with that came growing uncertainties, decreasing self confidence, worry about upcoming appointments and scans, and concern that the normal we’d had was never going to be recaptured. But, we had hope that it would. Even when the headaches became intolerable, the neck movements more difficult and the sight marginally reduced, we felt that surgery to remove as much of the tumour as possible would see us return to a quieter life. It was the end of March 2005.
Surgery and chemotherapy saw her eyesight become worse and her short term memory affected. The medical response to this was to try to deal with the loss of sight and loss of memory as separate problems whereas the reliance on learning new techniques for overcoming sight loss and the reliance on visual cues to overcome memory loss meant they were intrinsically related. Having had to give up work and having had her life catastrophically altered, there were also issues around self-esteem and self worth that needed to be managed; new social networks needed to be formed and new ways of stimulating her intellectually and creatively had to be found. These issues were all related to the person, not issues to be managed independently from each other.
We found Headway by accident in early 2006. In retrospect it was too late – we could have done with them about three years earlier – but Headway House offered a place to go, to be with other people similarly affected by brain injury, to socialise, to blog and to use the computer, to talk about her issues, to be creative and to see places that she otherwise wouldn’t get to. As the burden of care increasingly fell on me as I tried to maintain full time employment as well, Headway also offered a secure place where I did not need to worry about her and offered support for my needs as well.
In the end, the disease progressed and worsened, with complications and unpredictability, meaning that a residential home was the only viable solution for her needs. Whilst she no longer attended Headway House, the friends she’d made there continued to support us through to her passing in 2008. The photos I was looking through show the transformation from a bright, glowing, vital young woman to a frail, terrified, damaged person who tried very hard to smile and be positive in the face of devastating changes to what was a promising life.
I’ve tried to move on too, but after five years I remain haunted by it. It doesn’t dominate me, but it hides in the dark parts of my mind, raising itself in low moments and clinging onto events, songs, images, smells that will take me back to some point in that terrible journey. The only real light from that whole period was the warmth of Headway; it was only they who really understood the comprehensive and strategic needs of a brain injured person, and they battled hard to find what she needed.
I know that the charity finds it hard all over the country to get to those people with brain injury – a hidden disease that the sufferers themselves may not know they have and GPs often miss or mistake for something more tangible. I don’t know what the answer is, but supporting your local branch is the simplest way to ensure that they can get the resources they need to find the people and to give them support. Why not seek out yours?