This isn’t thought out, it’s just what’s in me now, a sort of free verse letting go of what I don’t know how to say…

Sadness is insidious. It creeps in on you when you think you’ve gotten control of it. It takes hold and won’t let go. I’ve been told happiness is a choice but in reality happiness is a construct. It is a myth that a happy life looks or feels a certain way. True happiness is simple, it’s keeping the insidious sadness out. It is not found in flowers, candies. Happiness is found inside ourselves, outside of the confines of who we’re supposed to be. Happiness is found in our hugs, in our love, but it only has to look like what we want it to. No one can ever say what happiness is.

It’s acoustic neuroma awareness week, plunked right in the middle of brain tumor awareness month. A month where we’re all called upon to “go grey in May.” I should be writing about that, right? I want to do it, to enthusiastically own my condition and wear it proudly to the world in the form of grey t-shirts and ribbons. But I won’t. I won’t advocate for a cure, nor will I raise money to find the cause. I will tweet and participate in a cursory fashion from the sidelines. But I don’t have it in me to make it my cause, to wear it like a cheerleader and commodify it in that way. My experience is not a cause. It’s not fodder for a charity. It’s just what happened to me. A chapter in my book. A page I didn’t know how to write.

Plus, I’m busy. Drowning in the sadness of my everyday. Trying to choose smiles and warmth but not knowing how. Trying to protect and nurture love, but that monster sadness takes over. It mixes in with the physical pain of a scar coming un-numb and the tension that lives in my neck. It wraps itself around a jaw that hasn’t come unclenched since that first headache more than ten years ago and which clenches tighter with each emotional blow.

I want to be a crusader for the world. To blow the cold air away and let the warmth take over. I want to wear my disability proudly. But then, I don’t. I want to cherish my story, not just of Herbert but every pitfall and every triumphant climb. I want it to be mine, not a commodity in this marketplace of outdoing each other’s sadness. None of us can ever win, no one’s sadness will free them, vindicate them or make them whole. No one’s pain will give them peace. Not until they can let it go and life more fully for each day. So I focus on my happiness, the love I’ve so desperately tried to cultivate. I abandon the world and try just to see myself clearly. To see past the cookie cutter images of a happy life, a happy family. I try to destroy the barriers that keep me tied to what seems right versus what is right. I try to be more than the story set out for me as a woman. I try to be more than the story set out for me as a scholar. I try to be more than the story set out for me as a victim. I try to be more than the story set out for me as a survivor. I am more than what I see mirrored to be in the world. I am more than what I see in my tumor. I am whatever I want to be.

I have a poster on my wall. It shows a woman dressed uniquely, you know, marching to the beat of her own drums. Next to her are the words “here she lies, where she wanted to be.” Those words always struck me. The woman in the picture is weird, but she’s fiercely herself. Unashamed and strong she claims her space in the world and with it the love she deserves and the strength she can share. She shows the world that she is herself and worthy. She values love, individuality. She is empowered. Ok, maybe she doesn’t do all that, but that’s what she does for me. I will always advocate for what is important, but here and now, I stand here in sadness and in struggle, trying just to advocate for me and my happiness. Trying to see that weird, proud, strong woman in me.

And now, some quotes:

Peace and love,

Samira