Emma's Story – A Journey through Encephalitis
By Margaret and Ian Shaw
The Encephalitis Society
I read the book from cover to cover and was most impressed. Indeed I learned a great
deal that I did not previously know. I thought it to be an excellent piece of work
and that it would have been very informative and, to a great extent, comforting
had I been in a similar situation to that faced by Emma's parents. Luckily I am
incapable of imagining what it must have benn like to be Emma herself. How fortunate
we are!
John FM Rodwell, Chairman, The Hedley Foundation, 9 Dowgate Hill, London EC4R 2SU
An initial copy of the DVD is available at no charge to Encephalitis Society Members;
however we do ask that you pay the postage. Additional copies and copies for anyone
not directly affected by encephalitis or living outside the UK and Republic of Ireland
are £7. To become a member of the Society, please download and complete the
membership form at the top right of this page.
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Forever
Today
By Deborah Wearing
Reviewed by Ava Easton
ISBN: 0385 607091
Clive is a world famous musician and scholar on the work of the Renaissance composer
‘Lassus’. He is a workaholic and perfectionist and Deborah and Clive
mean everything to each other. Sadly Clive develops Herpes Encephalitis and despite
being treated on the then new drug, Acyclovir, he sustains significant injuries
to the parts of his brain responsible for memory, among other facets of his personality.
The Acyclovir probably saved his life however it was too late to save his memory,
which is virtually completely wiped out. Clive is left with no capacity to remember
anything and no capacity to relearn. He constantly thinks he is waking every few
moments and our witness to this torture is heartbreaking.
Deborah takes us on their journey and the many hurdles socially, politically, and
emotionally that she manoeuvred, both with and without Clive during their 20-year
journey to the present day. Somehow Deborah and Clive eventually build lives together,
yet separate from each other in order to bear the legacy left by the Herpes Virus.
However one thing never changes during this epic journey and that is Clive’s
enduring and passionate love for Deborah.
This book is an emotional journey but also an educational one and socially documents
some of the movement within brain injury services during the last 20 years. A must
read.
Healing Lazarus
By Lewis Richmond
A Buddhist’s Journey from Near Death to New Life
ISBN 0-7434-2260-0
Buddhist teacher, businessman and musician, Lewis Richmond’s near death experience
followed a sudden attack of viral encephalitis which left him paralysed and unable
to speak. This is the story of his slow and difficult journey from this state to
almost complete recovery.
The illness follows a sequence that is familiar to many other encephalitis victims
– flu-like symptoms, high fever and coma followed by the long and painful process
of recovery. Richmond sees his suffering through Buddhist eyes which does not help
him very much at first. In fact he feels ‘intensified distress’ when
he finds he is not calm enough to meditate. Later, when he is stronger, his faith
helps him to cope with the challenges of rehabilation and to move from feeling suspicious
of his care-givers to remembering, ‘how important it is to allow others to
step in and hold us, support us and allow us to accept whatever our fate will be.’
Lessons learnt about suffering are an important part of this journey. Change and
disaster are not cruel tricks of fate but a fundamental part of human life, a Buddhist
truth that Richmond had understood in theory but which now becomes real. While he
is still weak, he is hoping for the opposite – ‘for permanence, safety
and for the hope that nothing else would go wrong.’
Richmond says that his healing experience was obviously coloured by his personal
history and that someone else would have a different story to tell. That may be
so, but as a fellow survivor of encephalitis his story often reminded me of feelings
I had almost forgotten. I was particularly struck by his intense feeling of grief,
fear and isolation when he is, ‘overwhelmed with sadness over my lost identity
and shattered sense of self’, and he mourns for the person he had once been.
Brain disease and recovery from it are not often written about by the sufferer because
their memory is affected and bound to be confused. This is a clear and memorable
record of a devastating illness in which feelings of fear, isolation, sadness, despair
and gratitude are vividly described. One of his doctors said Richmond was ‘unusually
perceptive’, pointing out that most patients, ‘don’t recognise
their mental confusion till it lifts, and then they are amazed.’ Unlike them,
he is aware of it while it is happening
At times, there is something of the over-achiever of the author’s pre-illness
life in this story. Not content with having survived, he is at pains to point out
how much he has learnt and how much he is changed by his illness – a ‘better’
person, ‘more humble and compassionate’ who now has a deeper understanding
of his faith and of the ‘fragility and preciousness of life.’ Following
encephalitis, he was afraid, helpless and totally dependent on his wife and carers,
and this led to what he describes as a ‘gradual opening of the heart.’
He learns a painful lesson in patience, humility and compassion, an experience he
describes as ‘inspiring’. On the whole, so this book.
Buy via our Amazon link
Out of It
by Simon Hattenstone
ISBN 0 340 71869 2 Hodder and Stoughton
The story of a boy who went to bed with a headache and woke up three years later.
'Match of the Day, Wizzard, T Rex, poetry and encephalitis, these were all part
of growing up for Hattenstone . . . Out Of It is littered with brilliant
and sharp observations of adult behaviour, made all the more poignant when seen
throught the eyes of one who has all but been dumped on by the adult world' The Times
Buy via our Amazon link
Me Myself My Memories
By Gillian Shaw
Reviewed by Ava Easton, Support Services Coordinator
Gillian has produced a collection of drawings, writings and photographs from her
childhood through to the present day. They describe her journey before during and
after her experiences of encephalitis - a memoir of a fractured self, for want of
better words. There is no doubt that Gillian’s book has been a cathartic process
for her – her visual imagery and writings are reflective of her experiences
and feelings. This book would allow people a glimpse into her world although I am
unclear about its wider appeal. People with encephalitis who have visual disturbances
might find some of the pages difficult to read where there is both text and imagery.
In addition I would urge a word of caution with regards Gillian’s remarks
about encephalitis. Encephalitis is not a virus as she describes. Encephalitis is
inflammation of the brain, usually the result of a viral infection.
There is no doubt that Gillian is very talented and such a visual image of people’s
difficulties following encephalitis is a useful tool in the campaign to raise awareness.
Anybody interested in obtaining a copy should email the office and we will pass
on your requests to Gillian.
The cost of the book is £8 (including P&P)
request@encephalitis.info
Last modified: 4 September 2008