The First Time

Share with your friends...
FaceLana Hilton was 14 when she had her first Tonic Clonic Seizure (Grand Mal) and was then diagnosed with Epilepsy.   Lana now has a wonderful website called www.thefirsttimer.com.  It’s about celebrating people’s ‘first times’ in life – not the dirty kind!  Her concept is based around the positive and negative experiences of doing something or going somewhere  for the first time and how those experiences might inspire or educate others.  I think it’s a fantastic idea and here Lana shares her very courageous and personal story about the ‘first time’ she had an epileptic seizure…
 

The first time I had a seizure

I was told that I fell back onto my head and went into a full on Tonic Clonic Seizure (Grand Mal). The worst kind. Arms by my side, a stiff contorting body and frothing at the mouth. Not pretty. Epilepsy is a disorder of brain function that takes the form of recurring convulsive or non-convulsive seizures. Epilepsy is not just one condition; rather it is a diverse family of disorders comprising many seizure types. A seizure is a single episode of a fit while epilepsy is recurrence of seizures.

12 years ago I was diagnosed with Epilepsy. It was my Year 8 school camp. I had pigged out on lollies and chocolate all day and night and after the teachers completed their final bed checks I raced into next doors room and proceeded to engage in gossip and all around teenage girly-ness, which ended in us crashing out after a sugar-high in the wee hours of the morning. Now my memory gets a little sketchy.

I can see myself in the dining hall with breakfast in front of me but not eating. I can hear loud, cheery voices, kids talking about upcoming activities. I can hear noises but I’m not listening. You know how you used to sit on the bottom of the pool with a friend and attempt to have a conversation? It makes sense when you are speaking but you can only hear high pitched, muffled ‘ohhs’ and ‘ahhs’. That’s what it sounded like to me.

My memory then flashes forward to sitting cross-legged on a dirt-laden forest floor, at the foot of a rock-face watching the camp guide jingle and jangle his harness. My first activity was to be abseiling – imagine what could have happened. I can see my friend throwing bits of grass at me because she can tell I’m not paying attention. She is laughing because I am looking at her but staring way into the distance. And then it happened. I had a ‘fit’.

I freaked everybody out and then I made them jealous by being scooped up into the arms of the hunky (late 90s reference) abseiling instructor and carried to the medical centre. I came to not long after. I was lying on a crisp white bed-sheet on an uncomfortably sturdy doctors table and whoever was surrounding me rudely jumped down my throat asking all sort of questions about my health. I felt dazed and incredibly heavy; as if the rock-face I’d been sitting at not so long ago I’d somehow packed into my pocket while I was twitching, out of control, on the ground.

Unfortunately, that was not my only seizure. Over the past 12 years I’ve had an ‘episode’ – as my family call it – at least once a year, sometimes more. I have had all the tests and lucky for me my seizures are provoked, that is, I can control them if I watch out for the symptoms that relate to me. I have never gone on medication and as a result, each year I’ve had to pass a medical examination in order to keep my driving licence. Hopefully in the next couple of years I can prove I can be ‘fit-free’ and this will no longer be the case.

I am going to include a link to a video of somebody having a seizure. This will be the first time I’ve ever seen footage of this event. I saw a Counsellor when it all started but I was in denial and didn’t want to feel limited by my condition so basically told her to p-off. She gave me a video to watch but I never did. Here goes…

(WARNING – REAL-LIFE VIDEO OF A GRAPHIC, TONIC CLONIC SEIZURE)

Wow. Heavy stuff. I watched about 20 videos before I chose this one as my mum said it is most like me. In each video I was so sad for the person who was having it and for those who had to endure watching it.  Some people have three or four a day – A DAY! I am extremely lucky compared to them. We are fortunate in that we don’t remember the seizures. It would be horrible to be aware that we were out of control, helpless and at the mercy of misfired electrical impulses which cause our brain and body to become momentarily scrambled.

I’d like to thank my family and friends for always being there and helping me through it. I have been lucky in that I have had someone I knew close by when I needed them. I often took you by surprise and scared the absolute sh!t out of you and for this I apologise. Thank you for keeping it together for me.

If you would like to read more about what to do in an emergency please visit this link for First Aid procedures for a Tonic Clonic Seizure. Remember, there is nothing you can do to stop the seizure, you can only ensure the person does not hurt themselves in the process.

Organisations to contact for further information are:

www.epilepsyaustralia.net

www.epilepsy.org.au

www.epilepsy-society.org.au

www.epilepsy.org.nz

I asked Lana how having Epilepsy impacts on her life:

I am lucky in that I don’t have to be on medication and can still drive but it has impacted me in that I have to be very wary of the three factors that provoke my seizures – heat, lack of sleep and time of the month. In Summer I have to be very careful.

My Mother and Sister have been there most often when I’ve had a seizure and it was always very scary for them even though they knew what to do. My younger Sister was (and still is) constantly worried about me even though I’m 26 and coping with it. They have to walk a fine line between asking “are you ok?” too often and noticing that something is wrong before I do and trying to get me to lie down.

I also asked Lana to give some suggestions for how friends and family can best help:

What I can suggest is that friends/family don’t give up and are always aware of the signs, but that they also let us make a mistake every now and then so we know what the consequences are. Only then will we attempt to have more control over our own lives. They also shouldn’t be offended when we are in that ‘strange’ pre and post-seizure state…we say things we don’t mean and are pretty out of it. Although it is scary it is nowhere near as bad as other illnesses and diseases and they should be thankful for that.

Share with your friends...

Speak Your Mind

*