I would like to take a moment to thank the Neurodiversity Movement. That’s right, the whole and justified crusade for acceptance and understanding of our many neurological differences. Although I began learning about neurodiversity in relation to Autism, my neurology has peeked it’s divergent head out of the blue. It is extremely important to note that epilepsy and Autism are two very separate and distinct variances. I think Amy Sequenzia summed this up perfectly in a recent piece she wrote for Ollibean.
“I am Autistic. I love my brain, I am proud of my neurology.I have epilepsy. Seizures make my brain hurt.”
However, having been deeply immersed in my learning about Autism as a kind of diversity (as opposed to all the other stigmatized perceptions that the world will lay onto it) has helped me come to terms with my own self. Vitally, the Neurodiversity Movement has given me perspective, an accepting perspective, not of my epilepsy per say, but of my whole and justified brain.
Perspective on panic: I have written about my first experiences having seizures as a wild and Rebellious teen, and I have also touched on the vulnerability and fear that comes with having seizures as an adult, as a Mother. At first, I blew epilepsy off, and for some reason I remained seizure free for almost 15 years. Lucky me, to be so carefree. Then, of course, everything changed. Having a seizure and the entire trauma that I experienced around that event was heavy. It still is. I want to be free of that worry but I never will be again. The thing is though, I did not panic. My fears were and are in check. There was no devastation, only a hard change. I have already walked through panic. When the first of my Sons was diagnosed with Autism, I went into a tailspin of fright. I followed every dark thought. I cried days away. I was captive to my fears.
I was wrong.
I don’t know what was more painful, buying into those first fears, or realizing my own ignorance and the potential damage I could have done with it. I could have ruined my Sons’ lives if I had stayed afraid, but I already walked through panic. I’ll be damned if I will walk that way again. It took too much of my Sons’ lives and it took too much of mine too. I thank you Neurodiversity Movement.Perspective on shame: I have also written before on my habitual attempts to shed shame. I remember being scared to tell people, strangers at the park, even close family members, that my Sons were Autistic. I remember getting kicked out of story time at our local public library and that hot flash of humiliation thumping in my face while walking back to the car. I remember when someone I love did not bother to explain auditory processing disorder to a visitor, and instead said “He’s deaf,” because deaf was not as disgraceful to her as the negative associations she had made with Autism. I remember shame. It is the same burden as fear and stigma. It has nothing to do with my Sons and their neurology and everything to do with the rest of the world. There is no disgrace in how my Autistic children were born, their differences, or their disabilities and it is through that same understanding that I can now view myself.
I have become disabled.
I am not humiliated.
I am not apologetic.I am not guilty.
There was no way for me to properly advocate for my Sons while I was ashamed, and there would be no way for me to properly advocate for myself now if I were to accept that burden again. I remember shame, and I now know that I must fight it off too. I thank you Neurodiversity Movement.Perspective on love: If you have read anything I have written here, then you already know, everything I write comes from love. I love my kids like I need to breathe. Love is what brought us through the panic and shame. Love is what my Sons gave me while I was lost, mistaken, and flawed in my views on Autism. Love is what pushed me to find Autistic adults and finally begin to understand. Love is what held us together, and holds us, sturdy, as sturdy as a family can be with the twists and turns we have experienced in our journey. Amazingly, I had lived my whole life without realizing the power. I just didn’t get it. Now I do. I get that love is an endless well, stronger than anything that we might face. Love is what this whole thing called life is all about. It will guide my family and friends to support me when I am having a seizure. It will help me to make good decisions regarding our health. It is so prevailing that I love myself, even though I am different, even though my brain hurts sometimes, even though I have epilepsy. I found through the Neurodiversity Movement that Autistic people are absolutely loveable, and I am loveable too.
My deepest thanks to all who crusade.
And what is wonderful for the whole wide world is this; everything that I have gained here, applies to you too. Whoever you are, whatever it is that makes you different, I am not afraid. I will not be ashamed or shame you. I will love you. I will give thanks for you too.
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