Ken’s Story

Late in 1966, as a healthy, robust 2-year-old, I am told that my parents noticed change in my dexterity. Apparently, I had a fixation for taking a piece of cloth and running my hands from inside to out with both hands, and suddenly I stopped doing this, and, in particular, was no longer able to use my left hand.

Not long after this I started ‘fitting’, and my parents were told that this is something I would just get over by my doctor. They were persuaded to take me to a dentist as they thought my back teeth were coming through; on examination my dentist told my parents that my back teeth were indeed through and that I should be taken to the hospital.

Eventually I was diagnosed with viral encephalitis and was at death’s door for a period of time. To make matters worse for my parents, my youngest sister, who was only 3 months old, was suffering from pneumonia and was also gravely ill. Thankfully we both survived; life apparently went on.

In the 1960s and 1970s, there was very little information and support given to the families and survivors of encephalitis. I struggled at school; I was a problem child. The reality was that I looked healthy, had a extensive vocabulary and communicated well verbally. I had good problem-solving skills.

The lessons at school were simple, for the majority of the time that I was in the class, but my mind was elsewhere: ‘of the world but not in the world!’ I had dreadful results at school, but managed to muster five O-levels during three sittings.

I did have some notable achievements: I was given the same punishment exercise (writing out the chapter of a history book relevant to the coursework) twice in the space of a fortnight, which meant when I took the test I had close to 100% to the horror of my history teacher who wanted anything other than me having an excuse to take history as a subject the following year.

During my schooldays, Scotland’s teachers still meted out punishment by means of the ‘tawse’ or the belt. This was a two-foot long strap of thick leather that was swung from over the shoulder with the aim to connect with the errant pupil’s hands. The maximum punishment was ‘six of the best’. I worked out that in my 2nd year at secondary school I was hit by the belt in excess of 90 times. We had a league table, and I was in the top five in my year!

I left school convinced I was ‘thick’. I clearly was able to hold conversations with people from all walks of life, and was frequently told that someone ‘couldn’t understand why I hadn’t gone to university’.

At the age of 17, I was told by my mother that I had suffered viral encephalitis at the age of two. This was the first time that I had any explanation as to the problems I suffered at school. Apparently, the neurologist in the 1960s suggested that the only problems I would have would be to do with concentration. I do not have a school report card that states ‘lacks concentration’ fewer that three times!

This offered me a degree of hope, that maybe my problem was concentration rather than intelligence!

After a number of dead-end jobs, an insurance company, as part of their recruitment process, asked me to take a telephone-based ‘psychometric test’. I apparently scored very highly on this which persuaded the company to take me on.

I still seemed to be an enigma, with excellent communication skills combined with significant difficulty studying the technical manuals. Over time I managed to pass everything, and for a number of years had a career representing the company to professionals such as solicitors and accountants. I found that my communication and problem-solving skills allowed me to manage this job effectively.

Then a strange thing happened. The newspaper ‘The Independent’ had a small puzzle every day devised by Mensa. I sat and completed it in no time at all and thought it a fraud. I was surprised that when I gave the same puzzles to my friends and colleagues, none of them could do the tests.

After some persuasion, I sat a supervised test. Due to my continued lack of confidence, and my belief that I would fail, I was out drinking until 3 am on the day of the test. Not the best preparation for a test at 10 am. Such was my lack of confidence that I believe that I almost wanted an excuse for the dreadful results that would ensue. My IQ came back at 143, very close to the top 2%.

This meant that I no longer had the excuse of a lack of intelligence, rather I had learning difficulties and I had to confront these.

I’m not saying that life has been easy since I was 27; however, I have understood that my brain has limitations. It is pointless me trying to work in a messy environment, I will simply daydream and shuffle bits of paper from one end of the desk to the other achieving nothing.

I take copious notes, not to recall but simply to stay engaged during conversations and meetings. I get slightly distressed if I do not have my A4 graph pad to write on and my black Pilot G-2 07 pen to write with. They are surrogate teddy bears to me.

I do not think linearly, and as a result work very well with ‘mind maps’. These allow my brain to go off on tangents which, when followed through, sometimes provide me with original and exciting ideas.

Probably most importantly, and so frequently ignored when I speak about it to other people with learning disabilities, such as dyslexics, I use a voice-recognition program called Dragon to type all my meeting notes and indeed this story. This means that a document like this can be completed in under two hours. If I were to rely on my typing, my angry and frustrated brain would lose the plot, and make so many mistakes that I would simply give up. A document like this would infuriate me.

I am a survivor of encephalitis but if you look at my life now, most would say that it is successful. I am married to a wonderful woman, we have children of 23 and 20 who are both healthy, happy and making decent progress in their respective fields. I have been running my own business for 13 years, we are well past survival stage and have had both healthy turnover and profitability for most of those 13 years.

In my community, I led a team of volunteers that took a youth football club from 50 players to 250 players over a 12-year period.

And along with a good friend, Richard Devine, I carry out historical walks of our town promoted through a Facebook page, Remembering Auld Ayr. These highlight the links the town has, which are as diverse as the Founding Fathers of America through to trade links with the Spice Roads. We often have over 50 people on each walk, which lasts over 2 hours. If my old history teacher could see me now!

I still don’t fully understand how my brain works, I get very frustrated, and, admittedly very rarely, my temper is frightening to behold. I am pleased to have found Encephalitis International; I don’t need anybody’s sympathy, but I believe that those that suffer from encephalitis, and the families that surround them, should have a body that can provide specific advice to the unique problems that we have.

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Page Created: 11 December 2023
Last Modified: 12 December 2023
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