The hair is the curtain of the skull

It was July, I was volunteering at my favorite youth leadership camp and feeling like, for the first week in a long time, I was comfortable in my own skin. The disconnection from my own personal reality and the immersion into the world of teenage leadership and empowerment was fulfilling and freeing.

I had just cut my hair, shedding the monumental weight of the emotional trepidation that had been endemic of my 2014. I felt new, though no one knew that, and I knew it was fleeting as reality loomed on the other side of a cell connection.

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Short Hair, Don’t Care…

One night, late in the evening, as I was just finishing working on what is called a “word of focus” to inspire the youth of America to be impassioned about the Rotary four way test, I saw the wifi kick on on my cellphone that I was using to look up quotes I had saved. Suddenly my voicemail chimed alerting me that people outside of this happy bubble I was in were clambering to get back in. What could it be? Who needs me that doesn’t know I’m away? I saw the Arizona area code and my heart skipped a beat, it was the neurosurgeon. I had had an MRI about a month prior but from my lay analysis of it, there was only marginal growth in the tumor. I figured if it was a problem the doctor in Colorado who’d ordered it would have called me with a grave seriousness in his voice imploring me to make an appointment. He never had so I assumed all was good. As I reasoned away the possible reasons for a midsummer’s call from a neurosurgeon I hit play. At this point I’d gone into my room and was sitting on the ground in the dark, hoping not to wake my roommates. I heard an unfamiliar and perhaps over confident voice. “Hi Samira, this is Dr. ________, we had a chance to review your films with Dr. Spetzler, we are recommending a surgical resection as the tumor has shown growth in multiple MRIs. Let us know if you have any questions.”

Let us know if you have any questions. Let us know…if you have…any questions. Wtf. Yes I have questions you insensitive brain cutter opener! Less than a year prior the last overly confident resident told me I could follow up in a year. This MRI was a fluke, to appease my local doctor who was anxious to radiate my brain. It was just to keep the people who hold my life in their hands happy, to let them know I listen to all the advice all the time. It wouldn’t show anything. I spent that night shaking and sending Jason messages over google hangouts. I couldn’t get on the phone but the wifi would make that darkness a bit less ominous. That was a rough night.

I would like to say there was shock of death or pain or a fear of the loss of my body that was just regaining strength, but really, I was just pissed about my hair cut. (Those more realistic concerns would come later but I had just reinvented my outer persona through my hair in hopes it would heal my mangled heart and all the broken relationships with family and love.) There’s no hiding a gnarly scar with a cute little pixie. There’s no combing it aside or a low pony tail with a hat to mask the pain behind the scar. Ok sure, be a Rihanna-esque badass who wears a shave job and her scars like proud markers of battles won. I would, but let’s be real, I’m not that badass, and it’s easy to say you don’t mind looking ugly when you are a reasonably attractive person not facing a forced quarter shave job, a paralyzed face and a magnet holding your eye shut. I’m just not interested in going through life as a Quasimodo. It’s not brave to do it, it’s circumstance. So perhaps I seem insensitive but I am growing out my hair. I want to bare my scars to the world on my terms. An outward marker of disability can be a beautiful thing and I do believe that our conceptions of normal should be shattered and what it means to be sick or well are just constructs that need to be dismantled. I really believe that. It’s just harder to fight that battle on my own body. Though I won’t stop trying to get my heart, my courage and my activism to catch up with my rational mind that sees an unjust ableist world shirking beautiful bodies from the center of our universes. It’s just hard.

And thus begins Operation Hair Grow Back. I’m not trying to hide behind my hair, I just want to ease the journey a bit. It’s like, we put curtains on the windows to make things feel warm and cozy, to let the sun peek in gradually rather than blind us in its radiance. I have no doubt (ok I have some doubts) that my life will someday return to being radiant, but I can’t face it all at once, it’s too much for this frail heart to bear.

So I am invariably in the awkward growth stage and things are getting really seventies up in here. We’ll call it vintage, it seems less awkward that way.

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It’s getting real 70s up in this haircut… nice side burns..

One day I will open the curtains and let the sun pour in, today, just a sliver will do.

Peace and love,

Samira

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One thought on “The hair is the curtain of the skull

  1. #1: You are badass. If you don’t see it, know that I do.
    #2: Your skull curtain looks good at any length.
    #3: Doctors are lame.

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