Time to Thrive
We're happy to publish this special blog post, written by a guest contributor. Tim has been living with epilepsy for over 10 years, and he's been involved with our Society for just as long. He's attended events, organized fundraisers, and now given the most important contribution - sharing his experiences with epilepsy.
I was first diagnosed with Epilepsy in the spring of 1993 - at 23 years of age. I had a Grand Mal seizure in the middle of the night, while I was sleeping – so I was completely unaware of it. When I woke up in the morning, I did not know that it had happened. I remember feeling a bit tired… but I was just going to hop in the shower and get ready for work. My partner at the time asked me “where are you going?” I said, “to get ready for work!” He said “oh no you’re not… you’ve got to go to the doctor today – right away”. He explained to me what happened… and that he had called 911 in the middle of the night. I was shocked.
How could such a ‘thing’ happen to me? I’m young? I work out. These things don’t happen to healthy, young people. And – to be honest, the word Epilepsy just wasn’t ‘cool’. In my mind – there was such a stigma attached to that word – and it would not be attached to me.
Over the next few weeks and months, I learned a bit more about Epilepsy. I went to support groups and to lectures on the subject (all via the BC Epilepsy Society). I learned that it is not a disease – but rather a disorder – a seizure disorder. My Neurologist was able to get the seizures completely under control… and for the next five to seven years, I just popped my medications down - and it was not an issue for me. Most of my friends and co-workers didn’t even know I had Epilepsy.
My life-affecting experiences with Epilepsy started in approximately 1999. I started to have the complex-partial seizures. These are not the physical kind that most people think of when they think of seizures. These ones were more ‘in my head’. Initially, I was only having these seizures while I was asleep (and they would wake me up). They were like vivid dreams that wouldn’t stop when I woke up – and I sort of learned to tell myself that it was “one of them seizures again” – and I would try not to panic. I coped with those ones to some extent.
It has only been in the last couple years that I started to experience newer ones during the day. I believe I started to have simple-partial seizures during the day. My first one was shocking. They would affect what I see and hear, and making me unable to speak – for the duration of the seizure – and a bit afterwards.
Even then, I didn’t worry about them too much because I never lost consciousness, I always knew where I was, what I was doing, who I was with etc – and that it was just a seizure that would subside in a few seconds or at the most - a minute. If I was having one with my partner, I would simply hold up my hand, signalling that I was in my “zone” – as we’d call it.
But, just at the start of this year… it started to affect me at work. They were happening more often and soon people at work were starting to notice “something strange about Tim” – and I felt that. Plus, it was really affecting my quality of work and most definitely - the quantity. I had no choice – I had to take time off work and work with the specialists on a solution before it got worse.
Since then, I’ve been through lots and lots of tests… and I am now waiting for a possible date to have brain surgery. Although scary, I welcome it… because it could mean the start of the end of my issues with Epilepsy. But – as we all know, nothing in life is guaranteed. I just like to focus on the positive.
While off work, I’ve had lots of time to think about me and Epilepsy. Surgery is not guaranteed – nor is the outcome. I know my memory has been affected. Let’s be honest - it sort of ‘sucks’. Sometimes I have to miss a social outing with friends. I accept that. Every one of us has to learn to cope/live with life challenges. This is my take on me and Epilepsy.
Overall, I have a good life – with a great family, great circle of friends, and a great home-life with my partner (and my dog Jackson). I know I don’t have a life threatening disease, for which I am grateful… but I have a disorder that I may have for the rest of my life. So… what can I do to live the best life possible.I read a great saying in a magazine a few months ago - and I just loved it. It said, “It’s not enough to be alive… but instead, it’s time to thrive!”.
For me, a day without having a seizure is a day to “feel good”. Sure… I’m going to have my days with a few seizures. But - on my good days, I’m going to do whatever I can do - to “thrive”.
I tell myself that my story is not unique. There are others with Epilepsy – some more severe than mine - and there are others with other health or life challenges. I’m a firm believer that you can’t have a happy, healthy spirit without a happy, healthy body. You can’t have a happy, healthy body – without a happy, healthy spirit.
So I say… get out there on your good days! Do things that empower your mind, body and spirit. Eat right as much as you can, exercise to get those endorphins going, surround yourself with people you love (friends & family) and people who inspire you, go for a hike, a walk at the mall, go to a fundraiser, organize a fundraiser, or start a home business. Give yourself goals – and then go for them. Do things that empower you physically, emotionally and spiritually. We all should make our good days so good that they over-power our down days… because you know what? - With Epilepsy or not - we’re all going to have them! We must do whatever we can on our part to further enhance the treatments/medications we are taking – to make our lives just that much better.
That’s my story. Thanks for reading. What’s your next seven days going to look like?
Posted by BC Epilepsy Society at November 13, 2008 12:15 PM
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