The life I never expected

Way back... Way back when... Way back when I didn't know how disabled Hugh was or would be... Way back when I didn't realise how destructive his seizures were... Way back when I thought the doctors could fix things... I thought,  I thought that once we'd sorted the epilepsy everything would be better, I thought that once we'd sorted the epilepsy I'd have to struggle to come to terms with having a child that needed to go to special school.
I didn't expect to have to come to terms with having a child that would be unlikely to live past his teenage years.
I didn't expect to come to terms with having a son that hardly knew I existed.
I didn't expect that, even once the terrible times had past, the devastating consequences would remain.
Hugh's epilepsy has robbed him of a future. Hugh's epilepsy has robbed us of the child he might have been.
His really bad seizures are less often than they used to be, And for that I am grateful, But they cast a long shadow, And I ne…

The Epilepsy Lie


I have a bone to pick with the larger epilepsy charities and their blatant propaganda exercises in which they try to ‘normalise’ epilepsy.

"... Epilepsy is not something to be afraid of.

Epilepsy is not something that should stop you living a full and rewarding life.

Epilepsy is not something that should prevent you from achieving and fulfilling your dreams. ...." And so on ...

Really? I beg to differ.

That’s not the epilepsy I know.

I have approached a few of the charities with things I have written in the past. My posts never make the glossy magazines. They don’t get retweeted or recommended. My experience of epilepsy isn’t the kind of epilepsy they want to talk about. It’s not the kind of epilepsy they want publicised. It’s the epilepsy to be condemned to the shadows and ashamed of; the epilepsy that destroys lives.

In their push to ensure that the public understand that epilepsy can be treated and ‘normal’ life can resume, they’ve excluded those of us for whom that simply isn’t true. In their drive to remove the stigma and fear associated with epilepsy, they’ve belittled the demons that keep me awake at night.

Don’t tell me not to fear epilepsy; I will show you a mother who has given mouth to mouth to her own son at the side of a busy road.

Don’t tell me that normal life can continue; I will show you a boy whose seizures stopped him being able to swallow and who has to be fed by a tube.

Don’t tell me that epilepsy shouldn’t prevent you from achieving your dreams; I will show you a child who has repeatedly lost skills and been unable to develop due to the devastating impact the seizures have had on his brain.

1 in 130 people in the UK have some form of epilepsy

Approximately 70% of children who develop epilepsy will respond to anti-epileptic drugs. The remaining 30% will develop difficult to control seizures or ‘medically intractable’ epilepsy.

There are approximately 1,000 deaths from epilepsy each year in the UK. That is 3 people every day.

More than 500 are attributed to Sudden Unexpected Death in Epilepsy (SUDEP). This is greater than the average annual number of cot death and AIDS cases COMBINED.

(Source: http://www.sudep.org/whatwedo/learnmoreaboutourwork/)

Whilst I am happy that awareness of epilepsy is being raised, I am worried that downplaying its severity merely encourages complacency and marginalises those of us who live within the shadows of ‘complex epilepsy’ every day of our lives. There are many different sides to epilepsy and some of them are devastating.

Don’t tell me not to be sacred. I am terrified!

Comments

  1. It's the same problem with autism and aspergers: you're condemned if you write negative stuff about the effect that these conditions have on your child's life: it all has to be about how amazing they are and how they've enhanced your life, otherwise you're a bad mother xx

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    Replies
    1. Yes. Exactly!!! It's great that awareness of so many disabilities is increasing. But the reality for most people is far removed from the Paralympians that were heralded last summer. But to publicise the more negative and difficult aspects of life with a disability is almost taboo.

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  2. This is spot on. I feel torn btw the "good" face of Epilepsy and wanting people to have high expectation and not put a horrible stigma on it b/c there are certainly plenty of people with Epilepsy who lead "normal.productive" lives. But not my son. I'm with you. It's terrifying and every story needs to be told and heard. Thanks for sharing yours.

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    Replies
    1. Thanks TeamAidan, exactly! I do think its important to raise awareness and reduce the stigma, but don't want that to be at the expense of the 'other' type of epilepsy.

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  3. maggie.danhakl@healthline.com20 January 2015 at 04:34

    Hi,

    I hope all is well with you. Healthline just published an infographic detailing the effects of epilepsy on the body. This is an interactive chart allowing the reader to pick the side effect they want to learn more about.

    You can see the overview of the report here: http://www.healthline.com/health/epilepsy/effects-on-body

    Our users have found our guide very useful and I thought it would be a great resource for your page: http://littlemammasaid.blogspot.com/2013/03/the-epilepsy-lie.html

    I would appreciate it if you could review our request and consider adding this visual representation of the effects of epilepsy to your site or sharing it on your social media feeds.

    Please let me know if you have any questions.

    All the best,
    Maggie Danhakl • Assistant Marketing Manager

    Healthline • The Power of Intelligent Health
    660 Third Street, San Francisco, CA 94107
    www.healthline.com | @Healthline | @HealthlineCorp

    About Us: corp.healthline.com

    ReplyDelete

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