Epilepsy was something my Aunt Claire had. “Claire’s in a seizure! ” was something I heard on a daily basis. So much so that I had lost the fear of seeing her writhing around the floor. It was commonplace, a part of our lives. However, that Wednesday morning, I didn’t realise that at four o’clock that day , I would be the person with… that. Initially I had felt I had been robbed of my independence. Gone were the days where I could run out the door saying “I’m off out”.
I remember getting ready for the gym… hen what felt like seconds later lying in an ambulance, with the pressure of the oxygen mask against my face and the sirens blaring. Recalling the turning of peoples heads, as I was wheeled through the centre of A&E. I’d never been so mortified, I wanted to just curl up into a small ball and hope that everything around me would disappear, the stares, the mountain of questions. I remembering feeling as if I was on one of the medical dramas I had seen on T. V, I could not help but look at the wards and equiptment and make some link.
Thinking back, I can now see that I thought this way as a form of reassurance, to block out the seriousness of the situation, keeping in mind that the majority of people on these shows end up okay, and so would I. I felt intimidated by the three doctors surrounding me, but still I was the one to ask the question after suffering my third seizure “Do I have epilepsy”. With the question being so outright he hesitated to answer me, I remember seeing the look on his face and I knew my fate. The silence as we walked to the car and the thoughts of the drastic changes were overwhelming, would I just be known as the boy with the Epilepsy?
Would people still want to be my friend? Would they understand? These were the hurdles that I had to overcome I was off school for two weeks which felt like a lifetime, walking round that day knowing I’d be on my own without my family to answer the abundance of questions I knew I’d be faced with, left a heavy feeling of stress and anxiety churning at the pit of my stomach. At the school gates I watched my mum walk away, knowing every footstep she took was filling me with dread, she was the one to keep me from harm and now she was getting further away.
As I walked round the school shed, I was noticed instantly, I was expecting to be flooded with questions, but that wasn’t the case, it was just like any other day. I was only eleven, and it was only natural I wanted some attention. I remember feeling relieved that my close friends never questioned my absence, but in a way I craved their attention. Even though family are the main source of support and reassurance, there were difficult times when it came to the discussion of my treatment. My Mother had the opinion that I shouldn’t be treated any differently, that I should be treated like any other teenager.
But my gran had completely the opposite opinion. I felt as if she never saw the difference between Claire and I, when there was a very big difference. Thinking back to the times where I used to stay at my gran’s, and enjoy running down to the shops – that was only a five minute walk away – to get some sweets, seemed like an impossible task after my diagnosis. In my grans eyes my diagnosis changed everything, Thoughts of a genetic link between me and my aunt meant many visits to Yorkhill Hospital.
Since Claires had her epilepsy for 40 years in contrast to my 2 years, her appointment took longer. Claire’s always been known as mentally and physically handicapped with no specific name to her condition. After many weeks of anticipation, there was zero link between mine and my Aunt’s epilepsy. She was actually diagnosed with Dravet Syndrome, a rare form of epilepsy. For many years I’d help with the feeds and medications, l’d often wonder what she was thinking but she’d give the occasional smile, even though Claire’s condition is a lot worse than mine and can’t be controlled, I ope one day mine will.
So I can have a positive outlook on life and achieve all my life ambitions. I often questioned myself about that bump in the head I had got playing outside many years before. I knew , you can’t help but wonder. I had initially thought my epilepsy was somthing genetic, my aunt had it, and so did a few other family memebers, so it was the only foreseeable answer. However, that thought was quickly erased from my mind with the genetics test proving there was no link at all, le ing me questioning that bump in my head, even to this day.
But all the questioning would be left forever with no answer, so we’ll never know how it started. If I’m being realistic, I certainly would not be the individual I’m today, if it was not for the support of my family and friends. I’m not saying it was all smooth sailing at the beginning, it really wasn’t. But what I seen as being really overprotective, was me being really stupid and idotic, looking back, now I can see that it was because they cared – which I’m reminded often by my mother – and all I can say is I’m truly greatful.
