My experience of encephalitis – a journey towards gratitude

In February 2012, I had been working very long hours in my job as an IT consultant for a large IT company when I went down with a strong cold.

I worked from home for one day, and the next morning I was so unwell and disorientated that my wife phoned an ambulance.

They provisionally diagnosed a neuro-condition in the ambulance, and I was taken to St George's Hospital, London, where I was to spend the next four months.

While I was there I became completely paralysed and couldn’t even feed myself. I couldn’t walk, speak and I lost my memory to such an extent that I couldn’t remember my house. I was diagnosed as having acute disseminated encephalitis, caused by an auto-immune reaction. I had a plasma exchange, where the white blood cells were taken out of my body, put through a filter, and put back in again.

Over the next weeks and months, I had lots of physiotherapy and speech therapy. I slowly learnt to walk again, initially on crutches and then on a Zimmer frame, and eventually with no additional support. I had also lost my ability to write, and so every morning in hospital I took my daughters’ handwriting books and worked through the handwriting exercises. My memories started to come back over weeks, until I could remember my past, and also remember places and people.

But as I recovered physically and made rapid progress with my recovery, I developed a psychosis and delusions. I believed that the security services were chasing me, and many other delusional thoughts. These lasted a year and a half, long after I left hospital.

This was a very difficult time for my family. Then, one week in September 2013, 18 months after the initial illness, over a few days, the psychosis disappeared.

My recovery has been a kind of miracle. I have made spectacular progress on every level, and am now physically fit and running again.

However, the experience has not been without its consequences.

The encephalitis has left me with a mild brain injury, which has multiple effects. In my case means that my memory is not as good as it was, though it is not a disaster! My visual memory has been affected, which sometime makes navigation and getting to new places harder than before. And my executive function has been affected, making organisation and planning more difficult than before. Additionally, my much-loved wife said that she wanted a divorce because of the brain injury. And I have not yet gone back into paid employment, but instead do a lot of voluntary work, building my skills and experience, while contributing to meaningful causes.

I have found that in many ways this experience has led to a kind of post traumatic growth, which is described as positive psychological change experienced as a result of adversity. I have more compassion and empathy for suffering, better and stronger relationships with some people and through meditation have discovered greater spiritual awareness and developed greater personal strength.

I am fortunate to have made such a good recovery. I could have been left in any state of physical or mental disability. I appreciate especially the small moments in life, the walk in the park, the smile on my daughters’ face, the chat with a friend.

I am lucky indeed to be able to live a full, rich, independent and happy life, and really appreciate what I have and those around me.

*Ed is the organiser of informal get togethers in London for people affected by encephalitis. If you would like to join him at a future meeting, please send him an email.

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