The Nazis Came For Us First

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The Nazis came for us first; the epileptics, not the Jews.  Physical and mental deformities were much worse than merely being a Jew.   We couldn’t be allowed to reproduce and spread our dark and dangerous diseases to the Aryan race.  Starting on January 1st, 1934, I could have been taken and sterilized, no questions asked, no problem at all.  In 1939 it was deemed by “Action T4” that those who were considered “incurable” should be “granted a mercy killing.”  These incurables, people just like me, were the first to be sent to their deaths.  Who would protest for the freak, shaking in the street?  My husband reassures me, this wouldn’t be you, you just wouldn’t go out…  Did that help Anne Frank?

This was less than 75 years ago.  Before the Nazis, they burnt us at the stake, crushed us under millstones.   Surely she must be possessed, screaming and falling down, the shaking, the vomiting.  Even doctors that thought they were helping drilled holes into our heads with gruesome blunt tools.   Electroshock therapy anyone?   I shiver to think what would have become of me in a previous generation.   Not so many years ago, I could have been sent to an institution and restrained.   I truly appreciate advances in medical science.  Pharmaceuticals give me a better life.  Of course, things are not all roses and sunshine either.   Medical science and pharmaceuticals haven’t cured me.  My meds make me sick and dizzy and tired. I suffer from double vision daily.  My ears ring.  My seizures are not fully controlled.

More than one doctor has tried to convince me to have brain surgery.  That is not for me.  It is more sterile these days, but it is still gruesome.  I think of it as a melon baller, what they want to do to my brain.  Just go in and scoop out the part of the brain where the seizures start.  Where they think my seizures start.  No thanks.  I don’t want to do that.  Nor do I want to become a cyborg with wire running from an electrical pacemaker in my chest, into the deepest parts of my brain.  No, I’ll just go and take my pills now.  The side effects are crippling, but I have less seizures and my brain is intact.  I guess it is good enough for now.  No one is trying to kill me at least.

Of course, if I do have a seizure out in public, I must certainly be on drugs.  There is nothing worse than having a doctor angrily accuse you of being on drugs when you don’t know where you are or how you got there.  One minute here, the next gone.  I have no concept of time during a seizure and despite my talking and blinking and maybe answering some questions, I am not there.  I don’t know where I am.  Where does your mind go when you aren’t home?  Surely I don’t know.  My head is an attic full of ghosts and whispers, cobwebs and dust.  It is old home with an entire wing closed down and shut off for years.  Things get lost easily.  But it’s not because I’m on drugs.

I have Idiopathic Temporal Lobe Epilepsy.  It’s a mouthful.  Basically, my seizures start in the temporal lobe of my brain, for no reason.  Doctors use the term idiopathic to refer to diseases with no known cause.   Idiopathic is probably the scariest word I know.  It has it Greek roots in the words idios (of one’s self) and pathos (suffering):  personal and hurt.  Ouch.  My idiopathic temporal lobe epilepsy is my personal hurt and it has no explanation.  That part really scares me.  Everybody wants a reason.   I concoct reasons in my head.  But they’re not true.  They are just stories.  I was born this way.  I didn’t believe it for years.  YEARS.  That’s my personal hurt.

Honestly, now I am just glad to have a name for this terrible thing that happens to me.   Once they didn’t even have the words to explain these “fits.”  I didn’t always feel this way.  In the beginning, just hearing someone say the word epilepsy was one of the worst things about it.  It was laced with fear and loathing.  It was the worst word in the whole world, a dark, mysterious disease.  Now I am relieved to have a definition that I can share with the world.  It’s a short cut.  Everyone can learn the words “epilepsy” and “seizure.”  I won’t have to define them again and again.  I won’t have to explain as much.   I’m thankful for that.  It’s not really a complete explanation, but it’s something.   It’s a band aid.  A band aid serves it purpose.  It can’t heal everything, but it can hide the hurt and keep the dirt and germs out of the wound.

I may be incurable, but I am not going to be euthanized.  I am not going to hide in the shadows anymore either.

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13 Comments

Filed under Living w/ Epilepsy

13 responses to “The Nazis Came For Us First

  1. They are finally building a memorial for the incurables: http://www.bbc.co.uk/news/world-europe-23234296

  2. Kat, this is an incredible story. I am simply speechless. Your writing and your voice is so unique. More people need to hear your stories, and I am repeatedly stunned by the depth of your honesty and your ability to let me see into your world. Powerful stuff. ❤

  3. LCW

    Fabulous. Keep writing about it, it’s very healing. 🙂

  4. Thank you! It is *very* healing to write it all out. Thanks for reading!!

  5. Wow very powerful piece.

  6. I had the Left Temporal Lobectomy and it changed my life completely. Yes I have looked at scans of the brain now, and it is empty. This was 30 years ago, with new life, and proud that I had it done. Now I was able to work in OB and help to deliver babies, and watch them grow. Still on Dilantin and will be the rest of my life. Occasionally I have the aura, but know what to do to stop them. Never say you will not do something to help your live a productive life without seizures that control. There is a life for you, just read more about it. There was a 22 year old that had the mentally of a 2 year old due to seizures that had damaged his brain. He gave me strength before my surgery. Even though a Nurse, I too, had a fear, but this young man gave me strength. I hope this will give you strength, to give a second thought on surgery. I am 65 years old now and from age 15 to 35 seizures during cycle and ovulation. Hormones plays a large roll in seizures, so read more. I wish you well in any solution you take.

  7. Thank you for reading and thank you more for sharing your story! The more we talk about it, the better all our lives will become. The more Awareness there is, the $ donated, the more scientific breakthroughs that may come! Perhaps some day there will be not one more second lost… Until then, grin and bear it as best I can.

  8. nirile

    Plus, the whole Polish thing….

  9. That was a terrific story!

  10. Jessica Denny

    Did you know that Eugenics was started in the United States? The Germans actually came here to study it. This is why the Nazi’s were not charged with war crimes against sterilizing disabled people. Many epileptics were sterilized here and others were warned against marrying. This is why Emily Dickinson did not marry and why she was a recluse. It wasn’t until the 1950s the Eugenics philosophy was discredited. It is really sad to think of those that should have been but never were because of social and political opinions.

  11. This is just fab! I have epilepsy too and relate to so much of what you have written here. I write a blog about my experiences with it too. Hopefully the more we talk, the more the stigma ends. http://www.amurmuringmind.com/

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