We have been experiencing storms over the last few days. The air has been heavy as the humidity rises and the thunderous clouds roll around the hills. Like most of our summer storms we are bombarded with rain amid the electrical bolts and roar of the gods. And then in an instance the sun is shining again, the golden beams glistening on the new droplets as the world quietens once more. It is a tumultuous few minutes.
In many respects epilepsy can be likened to a summer storm.
A seizure can start with a warning, or aura just as the early rumblings in the distance of a storm warn us of what is building in the skies.
The middle of a seizure – the ictal phase – is electrical activity in the brain, like the clashing and banging of the thunder and lightning. And then just like a summer storm the seizure ends and recovery begins.
It can be debilitating. It can be overwhelming. It is a chronic condition, which for over 50% of sufferers there is no known cause.
My niece started to experience this affliction first hand in her teens. A tough gig when you are just starting to spread your wings and make your own way in the world. When I asked her about her experience she said “Having the doctors tell me I couldn’t do a lot of things was very hard to hear, quite upsetting because I wasn’t able to do what my friends were doing”. And in your teenage years its all about your friends!
It took her years to gain her driver’s licence. Her seizures, though intermittent with medication prevented that next step towards independence.
Fast forward a few years and Maddie is now 23. With the right medication and support from family she will celebrate 5 YEARS seizure free on Christmas Day. That will be something worth celebrating!
Day 17 of the Advent Calendar for Making a Difference recognises the wonderful support and education provided by Epilepsy Action Australia.
An excerpt from their website really demonstrates their supportive approach to Epilepsy
“Epilepsy should not define who you are and what goals you would like to achieve.
Take the time to adjust and accept the realities of having a chronic health condition. Try to learn as much as you can about it, ask for support when you need it, and actively involve yourself in your treatment and managing the condition.
Above all, look after yourself. That not only goes for those with epilepsy but for the parents of children with epilepsy or those who care for a relative or loved one with the condition.”
One in three people with Epilepsy will never be able to control their seizures with medication. Imagine how debilitating that would be.
For people like my niece Maddy it is heartening to know that there is support, online tools, training and education in times of need. Epilepsy Action Australia makes a difference to people and their families who suffer with epilepsy. You might like to help make a difference too.