I very nearly lost my life to encephalitis.

An illness I had never heard of, had put me in a coma on a life support machine for weeks and hospital for months.  Those months in hospital and the months after are still a big haze.

That was the summer of 1995 and one I won’t forget.  There was hardly any or very little awareness of encephalitis, even doctors at the hospital had difficulty in diagnosing why I was so gravely ill in a coma. Decades on, I am still living with the after effects.  However, the added frustration for me has been that hardly anyone I came across had heard of this illness or understood its life changing effects and what sufferers have to deal with on a daily basis. The added difficulty is that some in the medical field also do not understand it much or understand the devastating effects on survivors.

I’ve always thought of writing about what happened to me not long after I returned home following my final exams at university in the summer of 1995. My consultant once said I should write a book; I know where it would start.

I am still clearly remembering that Friday afternoon. My mum walked into the hospital with bags in her hand.  She stopped before reaching me. She bent down to look at me with a smile, like she was visiting her young child.  She sat at my bedside, gave me a hug, and asked how I was today. She told me that my neighbour would visit that evening.  They were going to the holy city of Makkah for Umrah and would pray for me. I recall my smile and silent internal laughter at that comment, thinking ‘yeah right!’.  I was thinking my immediate family can seem real in my dream but not my neighbours, that is going just too far!  The next thing I remember is later that evening my mum walked in with the young couple behind.  That was the very moment my world shattered.  It had not been a dream, one where I remember thinking why won’t somebody wake me up, why won’t my brother annoy me and wake me up, I’ve had enough of this dream and want to wake up now.  Thinking about it now still takes me back to the sadness of that very moment.  I had been in a deep coma, kept alive on a life support machine for over a month with very little or no hope of survival.

That evening I recall saying to one the nurses ‘I’m sorry if I’ve been rude to you’.  I thought I had been dreaming and I could say whatever I wanted to whomever I wanted, after all it was my dream!  Funnily enough, I do recall being cheeky and back chatting medical staff at times. I don’t recall the nurse’s exact response, but it was along the lines of you have nothing to apologise about.  I also recollect my handsome physiotherapist (he reminded me of Fonzie from Happy Days).  He helped me learn to walk again for which I will be forever grateful.  I remember him training me to walk up steps and repeating ‘no don’t hold on to me’ try a step.   After intense physio I was eventually able to walk first with a frame, then independently though slowly and wobbly.   I had lost the ability to use the right side of my body.  To this day it is still partially numb.  I remain unable, to co-ordinate my left side for fine movements.  My condition had affected various functions of my brain such as cognitive functions and memory Since being diagnosed I have come across only two other people with the same diagnosis.  Mine was a double whammy.  I was struck with brainstem encephalitis which as I understand is a cross-over of body functions in the brain hence I’ve been affected by it in such a manner.

Many people have awareness of meningitis and how it can be fatal if not picked up time.  This is somewhat similar but relatively unknown.  The added difficulty is that the diagnosis comes after a process of elimination.  As I understand, once tests for all other conditions come back negative it is diagnosed as encephalitis.  To this day when I speak to the experts in the field, I am told it was suspected encephalitis and they will never really know what caused me to be so gravely ill but that was the closest diagnosis and it was a miracle that I made it through, my consultant still calls me the miracle child.

Last year I wrote a blog on my condition to coincide with World Encephalitis Day.  Whilst doing some research for it I stumbled across encephalitis International, there was no such organisation when I fell ill.

I contacted Encephalitis International for some facts on the condition, they are the only organisation to provide much, much needed awareness and support of this life threatening and life changing condition.

At the same time I decided to do some fund raising for them, I do not  want other encephalitis sufferers to go through life without support, as I had done for decades.

I raised over £400 overnight from family and friends.  By the time my funding page closed I had raised over £1300 for Encephalitis International to help them to continue to raise much, much needed awareness of the condition, through the fantastic work they to do globally.