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You live and learn

Unusually I am going to post on a forum but as I viewed Jon Snow’s interview on the Channel 4 news last night I thought it was time. All I’m hoping is that I can put some minds at rest.

Firstly, living with epilepsy (sorry, I forgot to say that I had my first tonic clonic seizure when I was 9, I am now ahem........46) isn’t easy. It can be made easier, and strange as it may sound there can be positives.

I want to say before anything, to parents and children no one is at fault. We try to rationalise everything in life, you will be going around in circles getting nowhere if you try to. I hated the word ‘suffer’ and any mental and/or physical pains really can be ameliorated by companionship, love and a willingness to listen, and the ability to take a step back when the person with epilepsy wants to deal with things themselves.

You will probably find that maternal/paternal bonds are particularly tight and loving. It is something very natural to people that have epilepsy.

It is common to have poor attention, and schoolwork/work can suffer because of this. Look at the VAK (Visual Audion and Kinaesthetic) techniques as there may be something that will suit your child. Explain this to teachers as your child deserves the same quality of education that every other child receives - I taught for a year and witnessed the disparity the quality of education given to some children.

Your child still has opportunities to succeed and live a happy fruitful life. I’m about to list my first company on the London Stock Exchange which is a big deal for me, but for people that can really inspire your children here are some others that have inspired millions even billions of people whilst living with epilepsy:

Agatha Christie
Alexander the Great
Alfred Nobel
Aristotle
Charles Dickens
Edgar Allen Poe
Fyodor Mikhaylovich Dostoyevskii
George Frederick Handel
Hannibal
Julius Caesar
Leonardo Da Vinci
Lewis Carrol
Lord Byron
Martin Luther
Michelangelo
Napoleon Bonaparte
Pythagoras
Sir Isaac Newton
Socrates
Theodore Roosevelt
Vincent van Gogh

Life is different, I’m not going to lie. The medication, the embarrassment that can result from having a seizure and the disappointment when people tell you they are unable to deal with it when you first tell them. Even the way one thinks can be very different - although that doesn’t make it wrong. This means that those friends you do make are very special, almost as special as the bond between child and parent.

Understanding is difficult. My mother subscribed to Epilepsy Now (I think it was called that, it was American). It had an excerpt from Dostoyevskii’s Idiot, which led me to read it at the age of 11. It gave me an insight to my feelings, and helped me understand things that cannot be put into words here. I ended up writing a thesis on Dostoevskii at university.

I am quite emotional, a sensitive person, loving and caring. This is very common in people with epilepsy. Embrace it.

I was a particularly bright child, which may explain why the warning signs were missed. I would stare into thin air and it was described as Greg having “one of his moments”, or a “Greg moment”. My schooling was ruined, and teachers tried to have me put in a special school or home. This is the extreme, and shouldn’t happen now. My point in mentioning this is twofold. Firstly I had something as well as family to help me, in my case it was sport I was one of the top cricketers and rugby players in the country. Please find something that is an outlet, just because your child may not be getting the grades in class it is not the end. Secondly, later in life working with architects in my 20’s I found myself correcting their work, but I was the man with no education, not an O’Level or A’Level to my name. I decided to attend night school and go to university.

Achieving a BA and an MA gave me that confidence to be the best I could be, whilst making the usual mistakes along the way.

As someone with epilepsy your confidence (along with many body parts) takes a bashing. With others there for you (who will make mistakes, just as we will), a sense of purpose. This may take longer than most, but when you find it you cherish it.

I married a beautiful intelligent woman 3 years ago now. I told her about my epilepsy reasonably early (after about the 3rd date), and her response was to find out all that she could about epilepsy. She has seen a few seizures and the most worry thing for her (she tells me) is that she doesn’t want me to hurt myself. Her response was the most important thing. She saw past the epilepsy and looked at the person thus changing my life inexorably for the better.

My message is that there will be tough times, this isn’t anyone’s fault, be there for each other (you will probably forge a bond that is stronger than anything you thought possible) and never give up. Just because it may take longer it doesn’t mean it won’t taste sweet when you have that first success. If Da Vinci can do it, then so can you.

Good luck to you all.

Comments

thank you for sharing this!

thank you for sharing this!

Well said my friend. Best

Well said my friend. Best Regards

I wish my mother could have

I wish my mother could have seen this way back when I first started having seizures because she would pull me out of sports or anything she believed was dangerous and when I wanted to try something new she would always say you can't do this and you never will because your an epileptic. That bothered me so much and it still does it still puts a toll on me and I'm 38 and others have and are still telling me those same words and I feel like I will never achieve greatness because all my dreams have been taken away from me and I still do not know what I supposed to become. If she would have saw this maybe she would of thought of things differently and approved on my dreams. 

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