Why Headway is important

I've been made aware recently of the Brain Tumour Thursday programme on Radio Croydon.  The station broadcasts on the internet and, whilst many of the shows are likely to be of interest to people living in Croydon, the brain tumour programme has regular listeners from around the world.  It's presented by Claire Bullimore and her mum Eileen, Claire having survived a brain tumour herself.  I'll be discussing Headway North London on their show tomorrow, October 10.

I've been listening to their show from last week.  It discusses in some depth the issue of guilt.  As the carer of a victim of a brain tumour, I'm well aware of the guilt involved in caring and not being afflicted myself, but I'm also aware of the guilt that the victim suffered as a result of not having the energy to do the things she wanted, of not working, of letting people down, of not being the person she was or wanted to be.  The guilt ripples out as well, to family and friends.  Whilst the guilt is inevitable, it is also irrational but, despite that, it is still felt.

I'm also aware that guilt isn't the exclusive domain of brain tumour sufferer.  I would be surprised if anyone suffering from a disease or condition that diminishes what they would consider their normal self didn't experience some kind of guilt.  There's no doubt that this extends to brain injury survivors - some of whom will have fallen into the brain injured category via a brain tumour!

And there, in a nutshell, is the some of the complexity of dealing with conditions such as brain injury and raising the profile of a charity like Headway.  The brain tumour community can congregate around their clear definable condition and self support, share experiences.  They do cross over into the domain of other conditions, clearly, but if you have a brain tumour, the condition is relatively easy for the lay person to comprehend or appreciate.  Other conditions are similar - strokes for instance.

Brain injury survivors don't tend to have the same circumstances.  Brain injury can be caused by all sorts of things - by falls, assaults, traffic accidents and through conditions like stroke, tumour, encephalitis or aneurysm.  Brain injury is the result of something else - and it's the something else that often forms the focus of a persons recovery.  Whilst every brain injury has similar effects, the nature and extent of those is different in every case and most of what goes on is not physically apparent.  Likewise, brain injury often comes with side effects - loss of sight or other sensory perceptions, epilepsy, difficulties of movement, difficulties with memory - many of which might be addressed individually by medical teams.

Headway tries to provide a focus for people with brain injury, however they find themselves in that community - and remember, no-one is immune from - say - a bad fall.  Headway tries to deal with the person as a whole, and not as a series of conditions or as a victim of something in the past.  It's about the person, helping them through their difficulties and the changes they need to make to their life as a result of their injury.  People who find Headway - and for many it is a case of stumbling across it - really value the interactions they have with the charity, and the local groups provide a valuable focus for discussion, debate, support and friendship.

My brain tumour victim had lots of teams dealing with her different conditions - pills for the epilepsy, memory tests for the mind, implements to help the loss of sight become more manageable and advice to see her through radiotherapy.  No-one dealt with her issues of confidence, self-esteem, frustration, worry and fear within the health service.  We had to find help for that ourselves.  Whilst we found various sources of possible support that could address these things, nowhere did it quite like Headway and no-one else understood it like they did from the context of a brain injury.  This is why supporting Headway is important, and why you should support your local branch.