Sparkles, Gaslighting and a New Decade

Welcome to 2020! Welcome to a new year! Welcome to a new decade! We are back into the Roaring 20s! So what are each of us going to do!? I’m not even talking about New Year’s resolutions, because those only last until the middle of January anyways. I actually made a resolution and I broke it yesterday.


When I say “what are we each going to do” I mean, what are we each going to do? Not just lose weight/stop smoking/staying up too late/learn an instrument/whatever. I mean like, how to change our worlds. What is it that is in our world that we wish wasn’t? What isn’t in our world that we wish was? Which of these things that we wish can we change?


Obviously, I wish I didn’t have epilepsy. I might be an advocate for epilepsy awareness, but that doesn’t mean that I don’t wish I could wake up in the mornings and not have to worry about seizures. It doesn’t mean I don’t wish that I didn’t have to set my alarm for 30 minutes before I wake up so that I can take my medication and go back to sleep, or carry around my evening medication and a water bottle at all times. Being an advocate doesn’t mean that I don’t wish I could register for a race, or a trip, or join a running club, and know that I could commit to it without seizures getting in the way. That I would know I could wake up each morning and make it to an event.


However, what I do I know is that wishing isn’t going to change it. Nothing is actually going to change epilepsy for me, so that’s just how it is. How it will always be. No matter what decade it is. I will always be a person with epilepsy.


I can go forward and be unhappy about that. I can go forward into this new decade and think back to the life I had pre-epilepsy or even just back to when it was super well controlled. I can focus only on the periods of time when I didn’t have any seizures. In 2019 I went a stretch of 155 days without a seizure, and that’s pretty awesome for me. I could consider those 155 days a victory. I could consider that the only type of victory, the circumstances where something that is a part of who I am (physically and emotionally) doesn’t make an appearance.


Or… I can consider the times that I’ve had a seizure while running. Not in the way that it messed up my time/pace, but in the fact that I usually got up and kept running. THAT is a victory. I know that all of those times my knees hurt. My kneecaps hurt from the impact and my skin hurt because it was ripped open. But my lungs also hurt because I was running. My quads hurt because I was running. My brain was wondering how crazy I must be because I like running long distances for fun.


Please also note that in the 155 days that were seizure-free, I did not run a marathon. It was in other parts of the year that I ran the two marathons that I did. Seizure-free is not a requirement to racing.


In 2018, my medical condition was used against me. I experienced discrimination and the emotional manipulation that is gaslighting and other psychological abuse. I learned the insecurity that follows those things, and I spent a lot of 2019 trying to deal with that. In 2019 I made a lot of changes and I questioned my choices the whole time. Not just because they were major life changes, but because I had been led to believe that I was incapable of making decisions.


What I have realized, and what I plan to focus on for 2020, is that regardless of my medical condition, I have value. It is not unreasonable to anticipate that I will be treated with respect as long as I am treating others with respect. Asking questions is not subversive. Pausing to think is reasonable. Expressing emotion does not make me hyper-sensitive and illogical. Kindness is not transactional. Being seizure-free is not required to race, and there is nothing stopping me from starting a proper training plan.


And back to the topic of my ripped-open-kneecaps: on New Years Eve I wore a full length dress that had a slit up one leg to just above knee. My knees are super bruised and scarred at all times, and not for ONE MOMENT did I consider not wearing that sparkly dress for the gala I attended. Not for one moment. Looking fabulous and sparkly was way more important than hiding something I can’t change. And I was definitely sparkly. Being more sparkly is also one of my plans for 2020. I have already proven that I can be sparkly and epileptic at the same time. Sparkle sparkle sparkle!

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