Suzanne's story

After 20 years of epilepsy and a cocktail of medications, Suzanne Elliott has written her first novel, And I Love Her. She explains how writing has helped her shape a new life.

I remember my first fit very clearly – it was Halloween 1994 and I was attempting to do the Mensa test early one Sunday morning (does anybody else remember the teletext Mensa tests?) Before I knew it I was on the floor unable to move, but completely able to hear. To this day I am convinced that those in a coma can hear purely because I can always hear people speaking before I can move, speak or even make sense of things when I have had a fit.

The following years were a mess of medication changes, weight gain, skin problems, fits and missed school. Typical of an adolescent epileptic, I suppose. I was fortunate to have a good neurologist who tried a cocktail of drugs which shouldn’t work, but did for me. I remained stable from the age of 14 to 21. It was absolutely great as I was able to live normally – I made friends, I had part time jobs, I went to university, I went clubbing and I travelled abroad. Whatever people say about the amount of debt people leave university with I cannot regret any penny of it as I got to live like a standard teenager for a time and I am grateful for that.

Changing medication

In my final year of university I began to have a series of illnesses. At first my illness was dismissed as mumps, then glandular fever, then rheumatoid arthritis slowly moving through a list of illnesses which would put an episode of Grey’s to shame. Eventually my GP came to the conclusion that I was reacting badly to my medication and we would have to try and change them. In 2006 we tried to get me off my tablets completely which wasn’t a success.

Some people live quite happily without medication. My brain, however, is sufficiently skew-whiff, that it needs what my neurologist terms a hefty dose of medication daily. So, we went on to try Keppra – which turned me into the Incredible Hulk, Topamax which just didn’t work and Tegratol which caused me to stop sweating and have night fits. At which point we conceded defeat and went back to my original cocktail of drugs, glandular mumps and all. This was towards the end of 2008.

The problem with doctors is, no matter how good they are, and I’ve seen some great ones, once they have done their specific job then your other health problems or lack of quality of life doesn’t concern them. I was on so much medication at that point that my Mum had to cheat at scrabble so she didn’t beat me quite as badly as she should have done. I could barely hold a conversation and had to be in bed by half eight. It was depressing. I had left university nearly four years previously and had done nothing besides a little travelling and temping immediately afterwards. It isn’t that I resent my friends doing well, but it is soul destroying when they get married/promoted/move abroad and you are left stuck behind.

Alternative treatments

So, I began to seek alternative methods. I tried one which really didn’t work well at all. I developed an extreme anxiety disorder; a severe form of OCD (obsessive compulsive disorder)  where I jolt if anything is out of place and I fear having jolts. I actually became afraid of my epilepsy. This was my lowest point and led to a nervous breakdown in 2010. It did, however, prompt me to seek other alternative help and shape a new life.

I began to see a kinesiologist who helped to improve my general health and fitness which had become awful during my illness. I also began to write a novel, a Victorian family saga, to ward off the boredom. It got pushed aside many times as my health fluctuated but I finally finished it in February 2014. Since I couldn’t bear to have another year with nothing happening I emailed it to a publisher called Ravenswood, in America more in hope than expectation. To my surprise they accepted it. And I Love Her was published in April of this year and is now available via Amazon and through various stately homes. It is completely unrelated to my illness, although I am incorporating more of my experiences into the sequel. 

If you buy And I Love Her by Suzanne Elliott through our Amazon online shopping link, about 5% of the purchase price of whatever you buy will be donated automatically to Epilepsy Society at no extra cost to you.