“Not everything is rainbows and unicorns”
That phrase is the perfect response to the “overly positive.” I’m not saying there is anything wrong with being positive or that it’s not a good idea. But, there is something wrong when people are made to feel bad because they aren’t.
It’s hard to remain positive when you or someone you love has epilepsy. I see this during interactions with others like me. The majority of people are confused, frustrated, sad and angry. Many don’t know how to talk to their family, friends or even their doctors. They try, but as we all know it’s hard to understand if you don’t live with it or are a care taker. Sometimes I can offer advice on how to explain things to their doctors or how to address someone’s questions to them. But, other times all I can offer is an ear to listen.
I’ve been told I’m a pessimist and that I “enable” epileptics to be negative because I welcome their authentic and raw emotions. I prefer the term “realist,” but call it what you will. I’ve learned more from these interactions than any studies or articles I’ve read. It saddens me to have encountered people who don’t want to hear anything negative about epilepsy, interact with those who are negative about epilepsy and some even believe suffering is a personal choice. I take issue with all of those. Why? Because being positive all the time is an unrealistic expectation.
I agree that we should stay as positive as we can on this journey. However, I also know there is a lot of negative aspects to epilepsy. I, myself, admit to getting frustrated, sad, angry, etc.. sometimes on a daily basis. I recently got all of the emotions at once when the new Star Wars movie was released. Sounds stupid, right? I can’t watch movies in a theater or on TV in a dark room because it could induce a seizure. I felt like a 3 year old as I huffed up and said, “this is so not fair! All the movies sucked when I could go the theater and now they don’t. It’s a conspiracy!!!” Yes, I said all of that to Ben. While it’s not life altering it is something I really want to do, but can’t. I will not be positive about it because it flat out sucks!
People can’t be forced to be positive all the time, including ourselves. If you believe otherwise, you are sorely mistaken. You may be trying to fool those around you, but you’re only fooling yourself. If we’re being honest, many of you have acted like me; a three year old throwing a tantrum over a movie. We can offer encouragement, post positive meme’s, offer classes, tell them to suffer is their choice or simply ignore the negativity if we choose. But, if we don’t listen then how will we know how to advocate and help? The answer is simple; we won’t.
Would you say, “suffering is personal choice” to someone going through the pain of chemotherapy? How about to someone who needs a transplant, lost a child, had a heart attack, was hurt badly in a car accident, etc… I’d venture to say they answer is no. So why is epilepsy any different? It’s not.
We are all human and no matter what we go through we will experience the entire emotional cycle. Sometimes more than once and that is okay.
So I leave you with this:
To My Purple Friends: It’s OK not to be OK
To the parents of a child with epilepsy: It’s OK not to be OK
To the caregiver of someone with epilepsy: It’s OK not to be OK
To anyone who has lost someone to SUDEP: It’s OK not to be OK
To everyone, everywhere, no matter what you are facing: IT’S OK NOT TO BE OK!!!