Instead of focusing on all the things I couldn’t do, I began to rejoice in everything I could
I like to think I’m normal, but I’m not. I like to think I can do whatever I want, but I cannot.
I remember the first time this reality hit me, as a skinny, energetic, ringlet-haired six-year-old. That’s when I had my first public seizure. At school. In the middle of the classroom. On the mat.
But it wasn’t until a few days later that I got an insight into how it would affect my life. I’d been given time off school and my cheerful mother was driving us home from a visit to the shops when we pulled up behind the school bus. It was the first time I’d seen my classmates since the episode and suddenly a number of them began pointing out the window at me and talking animatedly. We sat like this for a few minutes as I wondered what would happen next. Nothing did.
As we slowly drove home, my thoughts were in conflict. Part of me had decided to put off returning to school for as long as possible, but the other part knew I had to face my fears. It was the first time in my life I realised that I was different.
Later, at the age of 16, I began to realise how much my illness would dictate what I could and couldn’t do. My schoolmates and I had excitedly taken the morning off school to sit for our learner’s permit. We walked to the road transport office, full of the expectation of independence that driving would bring. All five of us – diligent, dedicated hopefuls – proudly passed the test that day.
However, as we triumphantly filled out the paperwork to rubber stamp our test results and officially get our permits, my heart sank. There it was, at the bottom of the form.
The question that would change everything: “Do you suffer from any serious illness?”
The laughter and talk of my friends echoed around me as my thoughts raced. What should I do? If I ticked the “No” box, would anybody really know? But the idea that my epilepsy might make me an unsafe driver started to gnaw away at me. And, although I was just a teenager at the time and still immature in many ways, doing the right thing won out. Everyone but me returned to school with a piece of paper saying they were licensed to drive.
But there were also times when I didn’t let my condition restrict my life. One summer, I visited Dreamworld with a group of friends. The front gates hinted at the excitement that lay within; for once, I was determined to forget my woes – at least for a day.
As we approached the line for the roller-coaster, we laughed nervously, excited and a little scared. Last time we had visited, we were too young to go on this ride, but now we were teenagers, we planned to conquer it. At the front of the line I spied the information sign: “If your head does not reach beyond this line when standing, you are too small to go on this ride.” No problems there. “Pregnant ladies, people with heart problems, and those with epilepsy are advised not to use this ride.”
My stomach suddenly lurched and my mind raced. I had to make a split-second decision. I’m not a sick person, I reasoned. There’s no reason I should be left out. Epilepsy shouldn’t prevent me experiencing everything life has to offer. So,
I went on the ride. But my eyes were bright with a different kind of fear from those around me.
Today I’m an adult living with epilepsy. I’m married to a wonderful man and we have a beautiful daughter. My little girl Bella loves to dance and sway in time to music and I love to join her. When I do, I’m not sure if it is the dancing and singing or the laughing that exhausts me the most! But when we start to tire, I know that I cannot simply fall in a heap on the ground from exhaustion without provoking fear in those around me. I don’t have complete control over my body. I never will.
There have been times in my adult life when I could not even bathe alone, much less spend time on my own. The fear that I can lose control at any moment, and there is no way of knowing when this will occur, never leaves me. But my husband has been amazingly supportive and I am humbled by his dedication, patience, respect and care.
Recently we were on holidays together. We were walking along the beach when, out of the corner of my eye, I saw an old man walking along the shore with his grandson.
The boy was about six and they were holding hands. What a perfect picture, I thought as the sun began to set on the horizon.
Later, as we made our way back along the beach, I again saw the old man and his grandson, but this time they were surrounded by a crowd of people. As we got closer I realised the little boy was having a seizure.
I watched as the grandfather gently held the boy’s tiny body in his strong arms. The picture was no longer perfect, although the love was still there.
My head whirled with thoughts so different to the other onlookers. Seeing this boy, I also saw my mother holding my hand. I saw the love and commitment in her eyes and I also saw the fear. Seeing this boy, I saw my own child and the future that may possibly lie ahead for her.
The sad reality is that life as an epileptic is frightening, heartbreaking, complicated, gut-wrenching, tiring, disappointing and so much more. It can stop you from living, it can stop you from laughing, it can stop you from being everything you want to be.
But only if you let it. Over the years, the biggest obstacle I’ve had to face is not the condition itself, but the temptation to set limits on myself because of it.
Today, the thing I am most proud of is that I do not see myself as a “sick person”. I try hard to make the best of every opportunity in life and I fight every day to make my life about all the things I can do: the triumphs, the achievements, the beauty, the friendships, the laughter, the love. This is who I am.
Danielle Bruce, 28, is a counsellor who lives in Melbourne with her husband, Richard, and daughter Isabella, aged two. She enjoys reading, cooking and drinking good coffee.
