Living With an Elephant in the Room

elephant-in-the-room-audialtempartemI briefly touched upon epilepsy in my post about the Patriot Half IM, but I thought I would share more about living with this elephant in the room, which is my epilepsy. It is not something most people know, except some family and friends and coworkers (and those of you who read that post back in June.)

First off, what is epilepsy? It is “a neurological disorder marked by sudden recurrent episodes of sensory disturbance, loss of consciousness, or convulsions, associated with abnormal electrical activity in the brain.” There are different types of epilepsy depending on their symptoms: Generalized (in which they affect the whole brain) and focal, or partial (in which they involve a small area of the brain). 

I was first diagnosed when I was 16 with what is now known to be tonic-clonic seizures. I feel media does not help with the image of someone having epilepsy, as the severity of symptoms varies. I feel people do not know enough about it, and tend to stigmatize those who might have it. No, not everyone with epilepsy wears a soft helmet to protect their head when they have a seizure. Not everyone continues to have seizures throughout their lives, either.

I would usually go 6-7 months without having a seizure (I was seizure free for a year before that!). I’ve had EEGs done, CT scans, MRIs, you name it. There have been some questionable nervous system anomalies, just things to keep an eye on.

December, however, has been a tough month: having multiple seizures and now experiencing a different type of seizure (on top of the clonic-tonic) which are simple partial seizures. The new onset of a different seizure has definitely put me into a whirlwind of fear, anxiety, and shock.   My neurologist wants me to do even more tests which involve hospital stays and started me on even more meds. There is an elephant in the room, and it is my epilepsy. Every morning and evening when I take my AE meds, I am reminded of what I have.

After these newest seizures, the voices telling me “what if you have a seizure again? what if you are not somewhere safe? what if….what if….” have returned, and they are not fun to deal with. When I was first diagnosed I was living in fear. Then, as the seizure activity lessened, I was able to go on with life. Now, that fear has returned, and is bigger than before. Having a seizure isn’t a fun experience; it scares the crap out of me, even though I have had tons before. This fear has caused more emotional breakdowns than I have had in a while. I’m pretty sure Kevin has seen more tears this past month than before–from stress, anxiety,and fear. People tell me “you can’t control them, you will be okay, you are always okay.” But, the people who tell me that are not suffering from seizures. If they had epilepsy themselves, I am sure they would have a better understanding of where I am coming from.  For me, the fear has become almost debilitating. This fear makes it nearly impossible for me to slip into the pool and swim. Logic tells me I am okay, I will be fine, I have been swimming and nothing has happened. That elephant is still there, telling me I might have a seizure in the water. What if I drown? What if I have one and no one is around to help? What if…What if….What if…?

I’ve had doctors tell me to be careful with the activities I do; to pay more attention on basic human needs to include eating and sleeping, and not to over exert myself. It is difficult being told what you can do and what you cannot do. However, having epilepsy makes me more aware of my body when training, especially electrolyte balance, as an imbalance decreases my seizure threshold.

But, I have come to the conclusion that I cannot let the elephant be in the room anymore. I love to swim. I love to bike. I love to do races. Training for this Ironman means a couple different things for me. One of the reasons is the epilepsy. I am training and will do my best to complete it in order to shove that elephant out of the room. I want to show other people like myself who may have similar fears about their epilepsy, that something like competing in an Ironman event can be done, and for me, no matter what it takes, will be done.

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1 Comment (+add yours?)

  1. Trackback: Just Believe | A Rendezvous with Sneakers

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