Epilepsy and Exiguity…

So Year-1 has been a tough one so far. This week, I’ve had to make some hard decisions. Whether they (or publicising them here!) will come back to bite me, remains to be seen.

Is it possible to miss what you’ve never had? I don’t think so. I think it’s possible to miss the idea of something, but if you’ve never actually experienced it, then how can you truly know what it’s like to miss it. For example, most who know me well, know that pretty much all I ever wanted from life was to be a mother. A combination of factors, maybe I’ll get to those later, have put paid to that. I don’t miss being a mum, I miss the factors that would have allowed me to become one. I have a niece that I don’t see. She’s just 3. I don’t miss her, how can I, I don’t know her? I have friends who don’t live near me that I miss desperately because I know what it was like when seeing them was just a case of a quick call, text, email to find out when they were free. With my niece, the exiguous relationship (and its a real stretch to even call it that) isn’t the one I thought we would have. I thought she would grow up and we’d be close. I thought we’d do the whole auntie/niece thing of days out, playing, fun, laughter all the things I’ve experienced with my god children and the kids of my friends. I didn’t bank on her parents not wanting the same thing.

I’m not a good role model apparently. I’m not a positive female role model. Let’s examine that. I work hard, everything I own is mine because I worked hard and earned it. I didn’t inherit money, a lifestyle or marry a rich man. I have a great job (whether I enjoy it is a completely different issue). I’ve travelled a lot of the world as an adult through choice. I wasn’t brought up in different places around the world that I couldn’t possibly appreciate because I was far too young. I love the idea of that kind of life, but it wasn’t mine. I chose where to go, how to pay for it and whether to fully experience it. I’ve had some fantastic travels with friends, lovers and by myself. I own my home. Yes, it’s mortgaged to the hilt, but that was the trade off I made as an adult and I’m not living beyond my means. My arrest record is non-existent, my drug intake is limited to those prescribed to me, and my alcohol consumption has never put me or anyone else in remote danger. I’ve never lied on an official document. I believe my friends would say I’m a good friend, they acknowledge my demons, but ultimately I’m not a bad friend. I contribute to children’s charities and animal charities. I’m a responsible cat-sitter and I’ve done more than my share of babysitting. I choose not be close to certain people in my life, but should I be asked, I will have a conversation to explain why. But you have to ask me to share my reasons for that and it has to be a one on one conversation. But, I’m not a positive role model. So, if I’m being judged as such, I can only think it’s because my judges have never bothered to ask me why I choose to have a scant relationship with certain people; or it’s because I have epilepsy.

I’m not perfect by any means. I hope those who chose me to God-parent, babysit for or look after their pets recognise that I’m just an adult. A good person, trying to get by in life, making mistakes (paying for them!) but that my imperfections are what makes me a unique individual. If my epilepsy is what makes me an unacceptable role model, then to be brutally honest, I don’t want those that believe that to be in my life anyway. Belief that such an affliction makes you a bad person is a reflection on the judge not those in the dock. If I’m a bad role model because of the relationships and depth of relationships with certain individuals, then please ask me about it before you condemn me because you have half a story from another party or because you just can’t understand it.

I don’t miss what I’ve never had. I wish I could. I wish I could change some circumstances, but it takes more than wishes and all parties need to actively involve themselves in that process. I’ve held my tongue for years now and I’ve reached a point where not putting it out there weighs more heavily on me than the potential consequences. There is not a single scenario I haven’t considered, but I will not be judged anymore.

One thought on “Epilepsy and Exiguity…

  1. I’ve never had anyone tell me I’m not a good role model because of epilepsy. 🙂 Mostly, my siblings seem to feel a bit of guilt… like a survivor guilt thing. I don’t let it stop me from doing what I enjoy.
    There are so few people with epilepsy writing blogs. I laugh every time I read your blog title The Great Shake. Your very creative. 🙂 I love it!

    Liked by 1 person

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