- A tonic clonic seizure the day after my eleventh birthday; and,
- The list of “don’t do’s”.
You know that list… the one where the specialist diagnoses epilepsy and proceeds to tell you and your family all the changes that must be made. I specifically remember the following:
- School and concentration would be an increasing challenge;
- I would no longer be able to go to the cinema;
- TV, flashing lights and flickering sun light may cause problems;
- Roller Skating, bicycle riding and my team sport of Netball were now dangerous;
- Be conscious of the effects of music, its volume and live performance;
- You should not expect to qualify for a drivers license; and finally,
- You should never be left alone.
All I remember thinking was, “What! That’s unfair!” and finally the typical teenager response, “I’ll show you!”
At first I wasn’t allowed to participate in my school swimming carnival. That didn’t bother me. As a young nerdy musician, I was very pleased about that decision. Similarly, I loved the Serengeti sunglasses my mother bought me for car trips and outside activities!
What did get frustrating was being watched like a hawk. I roller-skated with company, I rode my bike with company, I swam in the beach with company. I wasn’t even allowed to lock the bathroom or toilet door anymore!
I was too afraid to tell my friends. Teachers at school were now even more conscious of my activities. One memorable example was our excursion to the Sciencentre in Brisbane. I vividly remember the fantastic spinning chair. Here is an excerpt from the Science Centre web page:
‘Sit, belt up and spin out. Take control: speed up or slow down using your body. Discover the tricks that skaters, dancers, gymnasts and divers use. Warning: don’t do this just after a meal.’
You can understand how I was looking forward to my turn. Unfortunately, while waiting for my turn, a special needs teacher quietly removed my well-behaved butt from the line and took me to this stupid platform that did a similar thing only at a snails pace. Whilst I said nothing and was polite, it still makes me furious.
Yes, school did become a challenge. I was diagnosed with both tonic clonic and absence seizures. The tonic clonic seizures were controlled by medication relatively quickly, however the absence seizures, although short, happened often. It is a cycle; concentrate, get tired, stress because you missed information, sleep, concentrate, get tired, stress, sleep…
You get the picture.
As for the DON’T DO list:
- I have my driver’s license.
- Roller Coasters – AWESOME!
- Bungee Jumping in New Zealand – AWESOME!
- Movie attendance: Although that IMAX cinema makes me incredibly ill, dizzy and shaky. Same thing with a few arty-farty movies i.e. “The Blair Witch Project”
- Rock Concerts!
- Radiohead: Fun but the lighting gave me tunnel vision and a wobble in my step;
- Other concerts include: U2 (twice), Metallica, Nickelback, Dixie Chicks, Billy Joel, Elton John, Robbie Williams (twice), The Living End, and Powderfinger;
- Festivals including Big Day Out and V Fest attendance (John Butler Trio, The Pixies, Pet Shop Boys, Muse, Angus and Julie Stone, Wolfmother, Tool and Rammstein);
- Musicals and Opera: all over the world. Too many to list.
- I am looking forward to Dave Grohl and the Foo Fighters in early 2015;
- I’ve trained and passed the Fresh Meat test for Roller Derby;
- When I have time, I join classes to learn street skating on Roller Blades;
- I have completed my Masters Degree in Educational Leadership with a 6.25 GPA; and,
- I have lived alone and away from my family.
Clearly, I am one of the lucky ones. Despite this, I too am familiar with the ignorant, panicked, wide-eyed look on people when they learn about others’ and my own epilepsy. This has meant that there are particular events permanently embedded into my memory.
For what-ever reason I was motivated, this blog will hopefully serve as some personal reflection, information, encouragement and support for others.