One Million Thoughts From The Day of The Universe

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One Million Thoughts From The Day of The Universe

I have to face a very hard reality; I wanted to recover completely but this might not be possible. My desire to never have another seizure represents what we all want. We want to be returned back to our original state. Before we were ever hurt. „There is a place inside of you that has never been wounded.” I think it is possible. But that time hasn’t come yet. Enter phase B. Caring, not curing. This is a very Buddhist principle. I can’t fix everything. I can’t fix my body, the past, not yet anyway, not even after 16 years of trying. I can’t fix an immense neurological condition over night. My brain rewired itself when I was a kid. I have to accept that. What I will not accept

Is blame or judgement or the suggestion 
That I have got any choice in a seizure
That is laughable and disrespectful. To someone who has never driven a car or who has been in hundreds of risky situations. It happens to me all the time. I get treated like I am exaggerating or faking. It hurts so much. 
In that moment people think I am just some problem child (I’m 31) and always seem amazed afterwards when they discover I am a highly educated and intelligent and god forbid successful person. But it doesn’t matter. Why should it matter? I am allowed to have seizures whether I am a software engineer or anyone else. Everybody is allowed to have seizures and we live in a strange world where some people would allow or believe one kind of a seizure over another

SO HOW AM I GOING TO LIVE THE REST OF MY LIFE

After 16 years of suffering I am going to say. Yes, this is real. Yes. I am vulnerable. Yes. I have to be careful. And if I feel one coming on. 
I can’t go outside. No matter how much I wanted to. And if it gets really hard not to move right before one - I have techniques I can use to stop the rapid flurry of movement 
That comes right before
YES I AM VULNERABLE
I can’t coach after work
I can’t provide excessive support to people outside of work
I can’t drink at your wedding 
I can’t come to your social
I can’t help you carry the furniture
Are you satisfied? I have spent my whole life trying to protect myself 
Now I need to protect myself more 
A glass fox hanging in a window and reflecting a block of flats
Look. I can dance. I can work. I can go on more and more walks. Every day of my life has been tough and I have lived a much tougher life than many could imagine 
But I can sing 
I can feel the energy
I can feel the wind farms 

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