Epilepsy and Sharks…

I was watching a programme on the Discovery Channel about Steve Backshall’s attempt to swim with the Great White sharks. The line he says at the start of his series , Swimming with Monsters, struck a chord with me. “I’ve devoted my life to adventure”.

I haven’t. It made me think about what I have devoted my life to. I came to the conclusion, pretty quickly, that I’ve devoted my life to wishing for adventure. It would be pretty easy to say that having epilepsy means that I can’t have a life of adventure. Easy to say, but untrue. It would be an excuse and I’ve tried hard never to let my epilepsy be an excuse for anything. Indeed, I have had many adventures and I’ve loved every adrenalin rush I’ve deliberately experienced.

So, I have a decision to make. Increase the meds; stop the meds; leave the meds as is. I don’t even know how to go about making that decision. The wrong one, potentially could be disastrous. The decision as to whether to skydive, the decision as to whether to shark dive, the decision as to whether to climb a ladder. Well they are made in the time it takes for my beating heart to decide whether to take the next beat. In fact, they’re not really decisions, they’re foregone conclusions. If you’re putting the opportunity to get into the sea with a Great White shark in front of me, then I can not resist. Lean, grey, elegant, streamlined beautiful sharks. But the three choices I face now? I don’t know where to start.

Not taking medication when you need to, could lead to an increase in seizures and an increase in seizures leads to an increase in the possibility of death. The words of my consultant. What if I don’t need the meds? Staying on the same dosage would, seemingly, neither increase nor decrease the likelihood that I’ll have a seizure. Non-one can say for definite whether the meds are actually working. I used to believe that while they don’t fully control my episodes, they do reduce the number I have. But do they? And at what cost? Increase the meds? Why? I’ve been on higher doses, I still fit. What about different meds? I listened to the consultant and yes, there are newer drugs, but not better ones. I try to do the research, but I don’t really understand the science and there seems to be just as many horror stories as there are success stories.

Maybe I should view the decision as an adventure? No one knows what the end result of any of the scenarios is going to be. Same as I didn’t know if a great White was going to penetrate the cage or whether my parachute would open in the skydive. Calculated risks though. The odds were in my favour. I don’t know so much about the meds decision. If I write on a form that I have epilepsy and at the same time say I don’t take medication, then I suspect the odds of me being able to do what I want to do are not going to be great. If I say I am medicated then the odds get better. But at what cost.

Meds, to me at the moment, are like a rogue shark. There are rogues in every walk of man and mineral. I don’t know what they are going to do to me and I don’t know how much of a risk I’m prepared to take. I’m having a hard time because there are no definites. No one can tell me if the drugs work or don’t work and if they are working, to what extent are they working. So many unknowns. Should I go with my heart or my head. Adventures have always been ruled by my heart and tempered by my head. I know there are things I can’t do, because, and this is the only thing the medical profession do actually agree on, I do have epilepsy. I won’t be able to deep sea dive – too dangerous for me and for others. I won’t be able to join the armed forces or emergency services – fine, I don’t want to join. It’s unlikely that I’ll ever drive – a combination of not being able to prove I’m controlled and my fear that my epilepsy maims or kills another living soul. Getting my skydiving licence is a bit iffy – there’s a grey area. I’ll never be a pilot – don’t want to be. I’m sure there are other things my epilepsy could stop me from doing, but go be honest, if they haven’t jumped out at me by now, then they’re unlikely to. So, other than the aforementioned there’s not much I can’t do. Should I choose to.

Choice. We all have choices. Even doing nothing is a choice. I can’t really explain why I’m finding this decision so hard to make. I haven’t talked it over with anyone either. I never really do talk these things over. I wonder what that should tell me? That I know I’m wrong and I don’t want the error of my ways to be pointed out to me? Or because, it’s my decision, and that means the responsibility really does lie with me. I can’t lay the blame at anyone else’s feet. I can listen to opinion but I find it so very hard to voice the turmoil in my mind.

As I write this, I’m feeling a mixture of anger, disappointment and fear. Pretty negative emotions. I’m scared of making a decision and I’m scared of making no decision. My decision-to-be feels so insignificant in comparison to some of the traumas my friends are living through. I feel small and weak-minded and I’m taken back to the knowledge that I’ve lived my life wishing of adventure and desperately afraid of disappointing people. So, I disappoint myself. Daft eh?!

My choice, ultimately boils down to drugs or no drugs. Sink or swim. No sharks or sharks.

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