On November 27th, 2007, I did what I thought was best for myself. I had a surgery, which for all intents and purposes, was elective.

I chose to have a skilled neurosurgeon remove a piece of my skull, of my first 2 vertebrae, release connective tissue in my brain and put a piece of cow heart lining on my brain’s lining.

I chose that.

And from that surgery, I got 8 months of freedom. I had 8 months of normal life, without pain, 8 months that will stand out as some of the best of my life. In those 8 months I returned to work, school and got married. I was a functioning human.

Last year, when I reflected back on the surgery, I was in the midst of a different (and holy crap so much less severe) long lasting headache. But at that point, I was still sure that I had made the right decision in having this surgery.

But this year, things just aren’t as clear.

There are some things that are markedly better than they were 2 years ago. 2 years ago my balance was awful. I almost fell over at a wedding from standing with my eyes closed. 2 years ago, my eyes would dart from side to side unpredictably, rendering me virtually incapacitated.

But 2 years ago, my left hand didn’t tingle. 2 years ago, my head didn’t hurt with a ferocity that literally brought me to my knees. 2 years ago, I wasn’t sore from lumbar punctures. 2 years ago, I had a diagnosis and a solution.

And I don’t know when the hurting will end. I live with fear and pain that 2 years ago only existed in my nightmares. The nightmares that are now my life.

As time has passed, my body has worked to cover the only real proof I have of what I endured. The scar is now light colored, it is surrounded by hair and if you aren’t looking closely, you might not even see it. But at the same time, my life has worked so hard to remind me of what that scar lies above. Of the pain and fear and unknown. Of the possibilities of more scars and more suffering.

(2 days post-op)

(2 weeks post-op)

(1 year post-op)

(2 years post-op)

Maybe next year the scar and the pain it represents will both be more invisible.

Maybe.

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