Awareness of this neurological disorder is still relatively unknown, despite a growing number of sufferers, writes VISHMA MISTRY
As I begin to think about ways to fundraise and build awareness for a very important cause in March, I recall memories of how that one thing changed the story of my life and to this day, still plays on my mind. This thing is called epilepsy.
Epilepsy is a neurological disorder of the brain function and takes the form of convulsive and non-convulsive seizures. A person diagnosed with epilepsy suffers from reoccurring seizures, for which no specific cure has yet been found. In fact, it is a family of different seizure types. It is like the unwelcome guest that turns up unannounced at any time in a person’s life. It doesn’t look at age, gender or lifestyle. Nothing can prevent it from coming into a person’s life, and nor can they be warned. And just like that, it came into our lives – unwelcome and unexpected. Not once, but twice.
At barely nine years, the word ‘epilepsy’ had no meaning to me; I had no understanding of what it was. All I knew was my mum carried a little gold cylinder keychain, which had the green first-aid cross printed on it, within which was a scroll of paper which read: ‘I am Epileptic’. I encountered what epilepsy was for the first time at home one afternoon; having returned early school, my sister, who was probably only four or five at the time, and myself were watching Neighbours, while mum was vacuuming. Then the next minute she was on the floor, she had had a seizure. My dad had told me what to do if this were to ever happen, but at that age how was I to know the seriousness of what he had said. Too frightened to climb over her and call the ambulance as I had been told, I remember switching off and unplugging the Hoover, taking her keys and telling my sister to stand at the front door as I went to shop next door to ask for help.
Can you imagine how frightening it must be for a young child to see such a thing happen to their parent? Even to this day the visual of my mother lying on the floor, blood coming out the side of her mouth, caused from having severely bitten her tongue, with her eyes rolled to the back of her head, as her body stiffened and shook as the seizure took control are still freshly etched in my memory.
In the end, epilepsy took her life and she was only 36. She left behind three children, the youngest, my brother – had only just turned two.
Epilepsy soon returned to our lives, and this time it was my younger sister, who was barely 10. This time epilepsy showed us how much power it had to change a person’s life, and not just by destroying them. My sister suffered from seizures almost every six months, and as the years went by, it took over her life, taking away everything she had. She was no longer the cheeky, highly organised young girl who used to make sure I had her clothes ready for the next day, and wouldn’t let me sleep until I did. She was no longer the girl that used to call me ‘Vish-a-n’ instead of ‘Vishmaben’. Her health had deteriorated, the seizures had affected her so much so that she was no longer able to speak, walk, eat, see – in simple words she was unable to do anything! She too was taken away from us, at only 16.
Epilepsy doesn’t only affect the person suffering from the condition, but also the family and friends of that person. It changes everyone’s life, just as cancer does.
No matter how long ago things happen in our life, no matter how old we were, and no matter how much we try to move on, there are certain snippets from our lives that leave their mark in our memories and bit by bit are pieced together, almost like making a short film – a memoir of ‘The life of…’
Even today, visuals from the past play on my mind, raising unwanted questions such as, am I next? What if it does happen to me? Is it passed on through genetics? And is there a possibility of it being passed onto my children?
But greater than this, the one person who’s life it changed, the one person that struggled and suffered but never complained, never gave up and still stood by and supported his family with strength, smiles and positivity – my father. A man that spent his nights in the hospital, and 12-hour days at work. A man who was not only a father, but also became a mother. A man who became a best friend to his daughter, something a sister would normally be, and yet he never complained.
Epilepsy is a life-changing disorder for everyone involved and not only the person directly affected by it. Here are a few facts that everyone should be aware of:
- Epilepsy is the world’s most common serious brain disorder.
- There are more people with epilepsy in the world than there are with cerebral palsy, Parkinson’s disease and motor neurone disease combined.
- Anyone at anytime can be diagnosed with epilepsy.
- One in 10 people will have a seizure in their lifetime.
- 70% of people have their seizures well controlled by medication, however, for others it may have severely disabling consequences.
- People living with uncontrolled epilepsy may suffer from wide ranging physical, psychological and social issues; including disadvantages in obtaining an education/ employment and social isolation, to name a few.
- According to the World Health Organisation it is probably the most universally neglected condition, due to lack of resources, social stigma and a low profile.
There are many, many more facts about epilepsy; however this is the most important one: according to a number of researches, ‘there are just as many, if not more, deaths from epilepsy than there are from breast cancer’. And yet epilepsy is underfunded and there are minimal efforts put into raising awareness of this serious disorder. If breast cancer can be given so much time, research, attention and funding, why can’t the same be given to epilepsy? Why aren’t more efforts being made to better and save the lives of those suffering from epilepsy?
Time and money should be invested in research of this cause, and in raising awareness of this condition. We can make a difference and help individuals and families suffering from epilepsy by supporting and donating to charities such as Epilepsy Australia, and fundraising on International Epilepsy Awareness Day, celebrated on March 26 annually, by simply wearing purple.
