From a carer...

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 sucumbed 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?

Brain injury survivors sing for love

A group of eight brain injury survivors are returning to Abbey Road studios in north London this weekend (September 13) to record The Beatles classic, 'All You Need is Love'.  

The eight, all members of Headway North London, had spent four days in August at the studios with the Nordoff Robins charity with the aim of providing some music therapy.  Between them, they chose the song, and added their own flourishes to the track, including Spanish guitar, their own poetry and a very passable David Bowie impression! 

The track is almost complete, and was played to the wider group of members at the summer picnic held at the end of August.  It was well received, and now they return to the studios to finish the piece and record a video.  Largely new to recording music, the members have sung, played the instruments and written the additional words.  The final track - to be made available on the group's website in due course - is uplifting and joyous.

Headway North London is a local group of the national charity, Headway.  Headway campaigns and lobbies for the needs of brain injured people.  Brain injury can occur through illness such as a brain tumour or a stroke, or may occur through an impact such as a traffic accident or an assault.  Brian injury is often thought of as a 'hidden disease'; even professionals sometimes miss symptoms such as emotional, sensual or cognitive impairments.

Headway North London covers the boroughs of Westminster, Camden, Islington, Haringey, Enfield, Brent and Barnet and runs support groups and meetings for their members throughut the year.  They are heavily dependent on charitable donations and the work of a small group of volunteers.

More information about the music, or about Headway North London can be obtained by calling Julie Bridgewater in the London office on 020 7625 3236.  The track will be posted on the groups website, www.headwaynorthlondon.org.

Headway North London - The Summer Picnic 2013

We have, for the first time in what seems like years, been blessed with a warm, sunny summer.  I spent the last weekend at the Palmers Green Festival in Enfield, an opportunity to try to get Headway North London into the public conscious whilst they are more interested in cool drinks, ice cream and fairground rides.  Not an easy sell.

But the good weather has allowed Headway North London to hold its summer picnic as planned, outside, on a balmy evening in beautiful Waterlow Park, Highgate.  It's a fitting venue for the charity, the park itself being a charitable donation for Londoners by Sir Sydney Waterlow in the late 19th Century.

The annual August event is always a welcome change from the usual monthly Third Wednesday meeting that it replaces - not because no-one enjoys the usual monthly social and the guest speaker that normally entertains - but because of the opportunity to breathe the outdoor air and meet old friends and new in a more relaxed, informal manner in the joyous gardens.

The picnic began at 6.30, and this year had the theme, 'With The Beatles' to celebrate 50 years since Beatlemania.  Those attending, which included clients, trustees and friends, were invited to come dressed in a Beatles-ish manner, and whilst some touchingly obliged, no-one - as far as I'm aware - was mistaken by passers-by for a young Ringo Starr.  But it was more about the getting together to celebrate the first half of the Headway year, in which Headway North London has sought to find new opportunities and new avenues for its services and meetings.

Though the possibility of a light drizzle threatened in the early stages, it passed and the three hours glided by in a haze of laughter and gentle conversation, with over twenty people contributing to the throng.  The event raised £150 for the charity, and as the light dwindled towards the end of the evening, people drifted back home with some warm memories.

The regular Third Wednesday meetings resume on September 18, at the Crossfield Centre in South Hampstead. The speaker will be announced on the Headway North London website in due course.

Intense and Inspiring..The Beatles by The ComaTones

I've just had the pleasure of listening to a reinterpretation of 'All You Need is Love' by The Beatles.  The track begins with a Spanish guitar before a gentle female voice recites a poem about being knocked off her feet 18 years ago.  The repetitive strain of 'All You Need is Love' follows - love, love, love - before a series of voices list some of the more uplifting Beatles titles - Come Together, Here Comes the Sun, Please Please Me - in a joyous rap; then an oddly enchanting Bowie impersonation cites another personal poem over the continuing loop of all consuming love.  It's genuinely powerful and cleverly, beautifully put together.

The track - recorded by seven members of local charity Headway North London in four afternoons during August - is the culmination of a  music therapy summer project in conjunction with the Nordoff Robbins charity.  All of the members taking part are brain injured; that is, they have all suffered from some event in their lives which has affected the way their brain works which has, in turn, affected profoundly the way that they can live their lives.

Julie, the owner of the gentle female voice at the start of the track, was indeed knocked off her feet 18 years ago, but rather than it being by love, it was by a car.  She was left comatose and, all these years later, she's still fighting to ensure that people like her - now brain injured and coping with it for life - are able to take part in society, maintain their confidence and self esteem and offer something to the world as a whole.

Talking to me, Julie describes the four afternoons as, 'inspiring and intense'.  For her, just organising herself to be in a place for four consecutive days is a challenge.  The effort involved in coming up with ideas for a song, facing the pressure to sing and perform and play instruments - all in front of other people and in the presence of music professionals in a recording studio - and trying to remember to bring her harmonica for the sessions adds many layers to an already crowded and potentially confusing few days.  It would be draining for anyone, but brain injury brings with it all sorts of side effects, such as tiredness, deprivation of senses, emotional problems and a fragile self confidence.

But in recalling the experience and listening to the song now, she reflects on a hugely rewarding and powerful week, not only for her but for her band mates - she calls them The ComaTones and already dreams of a tour and merchandise.  Almost overcome by fear of his ability, the Spanish guitar player has to gather up all of his courage to play the introduction, despite being talented enough to feature in a BBC4 documentary; the opportunity drives one member to make the tortuous and difficult trip from his house to the studio each day; despite not having musical backgrounds or a singing voice, all contribute with apparent gusto, playing the bass, percussion and singing and speaking the chosen words.  During a heated debate about what they might sing, one member steps aside for a rest and sits at the piano.  Not having played since his brain injury, he belts out the theme from 'Chariots of Fire', silences the rest of the group and is amazed by his latent talent and probably reintroduces to his life the love of playing an instrument.

Brain injury is hidden to most people and misunderstood by those who might have heard of it.  You can't see it, or put a plaster over it.  Some of those affected by it don't even know they may have it.  Brain injury can come about by way of a road traffic accident, or an assault or a fall; or through disease such as a tumour or a stroke.  Brain injury is very common - it changes a person, their thoughts, their moods, the way they feel about themselves.  It is hard to acknowledge and virtually impossible to heal.  But with charities like Headway North London and Nordoff Robbins, the issues facing those with brain injuries can be addressed.  As with anything, you only need to provide the right tools in life to make ANYONE shine.  This is what these charities do, day in day out.  The wholly uplifting stories coming out of this short week for seven such people is small testament to that.  Why not check them out, and even help them out too?