I'm a glitch

Note: I initially published this on my previous blog on 30 November 2012. I wanted to make sure it was here now since that site is inactive but it's still a story that has helped some and I want you to have a chance to read it as well!

I’ve gotta be honest with you – I normally don’t draft my blogs. Usually these entries – especially those labled “From the heart” come straight from my heart to the screen through my finger tips. I do very little editing, proofreading, or rearranging. I want to talk through this blog like I’m just talking to you and I feel most like I’m doing that when I just let the words flow. This entry is different though… this is a story I’ve told a million times. It’s something I’ve lived and known since I was eight. I do think about it every day but I don’t think of it as something that has gotten in my way which is probably why you won’t find a lot of mention of my epilepsy on my blog.

Have you seen Wreck it Ralph yet? As soon as Vanellope started talking about how she was a "glitch" and they showed how it affected her performance in the game, I knew I could relate to this girl...

I was diagnosed with epilepsy 6 weeks before my 9th birthday after having 2 grand mal seizures. For those of you unfamiliar, that means that I wasn’t conscious during the episode, had trouble walking and talking afterwards, and had no control over my body at all during the entire seizure. Both of them started while I was asleep but my dad saw the second one which is what gave the doctors the last bit of information they needed to get me started on medicine. After that medication controlling my seizures for 2 years, we reevaluated my status. Most children outgrow epilepsy and given my clean test results, I seemed a likely candidate for going off medication. Woohoo!!

Until a couple years later… I started having minor episodes where I would have trouble breathing for a moment but all of those episodes could easily be contributed to being overtired (I didn’t even tell my parents about some of those!), heat, or just too much going on. In retrospect, I know these were partial seizures (still conscious and in control of my thoughts) but that wasn’t apparent until I had two partial seizures that included full body convulsions. Back to the doctor and the medications.

I didn’t outgrow it and I have had a few EEGs that still show “abnormal activity”. I’m one of the lucky ones for whom medication can control my episodes and I live a pretty normal life. I can drive. I can work out. I do most everything everyone else does on a daily basis. I suppose that’s why I haven’t talked about my epilepsy much here – even though I think about it every single day (often several times each day), it doesn’t change my life too much. I have to be careful with how much caffeine I have (as we all should anyway), hyperventilation is bad, and I cover my eyes at the movies or a bar when lights are going crazy and strobe-light-like. Most any other changes are just so much a part of my life I don’t give them a second thought.



Lately though, some things have come into my life that bring my epilepsy a bit more to the forefront. Camp Do More, boxing, and babies. Just to be clear, no I am not pregnant and am not planning on having kids for a little while still. However, I am thinking about being a mom a whole lot more and I know that when the time comes, I will likely need to stop taking medication and I worry about whether or not I will start having episodes again that would put my child at risk. That’s a ways off so I try not to think about it but that’s a hard one to ignore when so many around you are having babies.

Boxing should be simple enough to explain but it probably is the most painful thing that epilepsy has taken away from me. Many of you know I had started training, was showing some good potential, and had set a goal with my coach to win the 165 lb Novice Chicago Golden Gloves title. I had a really good shot at it. I talked to my neurologist (she’s amazing) about it and she explained that just one hit to the head – and it wouldn’t even have to be a hard one – could undo all the control we’ve had over my episodes. I wouldn’t be allowed to drive, I probably shouldn’t live alone (imagine a seizure while I’m showering or holding a sharp knife…not a pretty outcome), etc. Life as I know it would be over. Hearing that is like being told by the person you love that you can’t be in their life at all anymore. I still feel like I’m recovering from a terrible break up – certain songs make me change the station, the boxing gym is a raw reminder of what I’m missing (although I still love everyone there dearly!)... You get the idea.

The reason I'm finally writing this blog though is Camp Do More. Turbo and Hip Hop Hustle especially were designed to be a party and as such, they are accompanied by loud music, lots of intensity, and party lights. Pretty cool right? Absolutely... Except for an epileptic who knows strobe lights and hyperventilation can trigger her episodes. I'm sure you can imagine that with all in intensity and excitement during a workout, hyperventilation is a very real risk and we already covered the lights.




For me, that means that I've been participating by doing the workouts in the hall in "normal" lighting and a bit removed from the intensity. When my gorgeous and amazing team captains asked me why I was working out so very removed from our team, I shared my story which brought up the question of the team competition. Each team does a routine on that stage and most importantly, under the lights. Because they didn't want me to miss out, they made sure our lights would be steady for our routine so I could participate. No one was going to let my epilepsy get in the way. In fact, since I was so determined not to let my epilepsy stop me, in addition to helping the team, they made me Team Redskins MVP!! I can't tell you how amazing that felt but I can tell you it paled in comparison to the moment I had with team captain Bridget Frederick at the dance party that night.

"You need to share your story with others," she told me. "There are people out there who are letting things like epilepsy scare them out of doing what they love. You can show them that it won't get in their way."



So there it is... Long overdue but shared.
I have epilepsy. It could stop me. It could scare me out of a lot of things. I keeps me out of dance halls, makes action movies a little tough to watch sometimes, and makes me nervous when I know that certain things happening in life are making me more vulnerable. I think about it everyday and take a decent amount of medication to make sure I'm not at risk or putting others at risk. My meds can make me tired, depressed, and according to some studies, suicidal. I can't eat grapefruit a lot because of how it counteracts with my medication. There are a lot of worries of what life will be like down the road when I have kids or start to have some of the long term side effects of my meds.

But I run, turbo, drive, love James Bond movies (even if I have to cover my eyes during the firefights), and have made it through college, a very stressful job, and several moves on my own. I do not let my epilepsy stop me and instead have made it just a part of who I am. I don't usually say I'm epileptic - instead I say that I have epilepsy because even though an episode can take control of my life for a moment, I don't let it control everything. That's life. That's what makes us strong. Find a way to work with the cards you've been dealt and push forward. Yes, pieces of your life may not fall into place just as you had always imagined but the next chapter will be better than the one you drafted for yourself.

I have epilepsy. It can be scary and it has changed my life but I wouldn't change that for a moment. In some ways, defying it and working with it has become my strength. It has taught me - in a very real and physical way - that I won't always be able to control every moment. But broken bones heal stronger, scars are tougher skin and the same can be said for a soul that has been through trials and turbulence. Allow yourself to learn and grow from these difficulties and in the end, it will be worth it.

November is Epilepsy Awareness month but I'm always an open book on this topic. If you or someone you know has epilepsy or even just questions, please don't hesitate to contact me at gabriella@teamaddictedbb.com.

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