Meningoencephalitis Lived Experience – Paul’s Story

A photo of Paul. Paul shares his lived experience of Encephalitis.

Below, Paul shares his lived experience of Meningoncephalitis.

For years I was in the ‘wilderness’ of recovery after I suffered encephalitis in 2002/2003. My family and I struggled to come to terms with the person I had become. In one of my many visits to the neurologists, I was told I would never work again, something that for a time destroyed what little confidence I had left.

After what I can describe as a terrible time, a journey which (through absolutely no fault of their own) saw me lose a large number of friends and family and become even more isolated, I was always worried it would come back to either take me or – in some ways worse – destroy that small part of me I had left, leaving me with nothing.

Sadly, it did.

Around 2007/8, I started to have issues with my eyes again and became constantly dizzy and spent an entire summer in hospital; it seemed momentarily that my brain forgot how to process information received from my eyes, no longer correcting the damage in my lenses. Everything I had worked for was lost, clients from the small business I had needed to find alternative assistance, and I was once again trapped not only at home, but within myself.

To cut a very long and boring story short, a friend saw how distraught I was and suggested I needed a hobby and lent me his old camera. I began photographing old toys and plants in the garden; soon I was active again.

My imagination sadly outweighed my skills, so I joined a photography class at my local adult education centre; not that I knew it then, but it was to be my newest and greatest chance to become valid in world again. My skills increased but whenever I succeeded, my imagination drove me on to bigger and higher goals. The same centre offered A-levels in photography, and I was encouraged by virtually everyone to join… so I did.

It turned out I was a natural. Perhaps because of my imagination or aptitude due to a glitch from the brain damage, but I think it was more to do with my eye issues; I had to wear darkened glasses, so was naturally looking cool no matter the time of day – I was destined to be an artist!

After A-levels, I found a drive I thought I would never feel again. Yes, in my mind I was still daft as a brush in many areas of my life thanks to ‘Mr Encephalitis’ and his invisible rolling pin, but in this part of my life, I had become successful, knowledgeable and to my amazement respected by some!

Due to this success, I chased the next step, and enrolled and was accepted onto a Bachelor of Arts degree course at UCA Rochester in Kent. I only went and passed! This crazy bloke who had lost so much and had no self-belief went and got straight A’s! To be honest, I’m still expecting to find I’m hallucinating again, like in 2003!

However, I’m not, and I’m now on a Master’s degree course in the hope I can one day teach photography, using the skills I have learnt, paying forward all the help I have received.

However, this isn’t a story of my life post-encephalitis, its ups and downs, the highs and lows. It’s not an ‘aren’t I doing well?’ a story of pride or of gloating (as none of those early insecurities have ever left). It’s a story that I truly hope displays the hidden lessons I gained and how you may benefit too.

Thanks to the classes at college, I have improved my social skills and won lifelong friends. I’m no longer scared to leave the house; in fact, I recently travelled to Paris on my own and didn’t get lost once!

The essays I have had to write have improved my acquired dyslexia. Rather than focusing on me, I now focus on the next task ahead, and that has had a profound impact on the rest of my life too. No one likes a grumpy old man moaning about who he used to be; instead I now moan about ‘nothing being on TV’ or my feet hurting like most men my age.

Thanks to the life lessons gained during the education I have received, I can look forward, not back.

It’s not the actual skills in photography that have truly benefitted me; it’s the skills I learnt by simply attending. Those skills can be developed at a knitting group, an art class or yoga lesson. Camaraderie with like-minded individuals who see past your limitations because you have a shared love of a subject is immensely beneficial.

I had the great fortune of finding a goal I could still achieve, despite my long-standing issues; it did take me some time to find it, but it truly has changed mine and my loved one’s lives for the better. There’s a very good chance it could do the same for you.

Paul’s Instagram

For another lived experience of Meningoencephalitis, or other types of Encephalitis, check our website for other stories.

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Page Created: 11 December 2023
Last Modified: 15 July 2024
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