Tuesday, January 24, 2012

The Longest Day

I was watching a show the other day about the training of special forces for various branches of the military. One episode featured a final exam called The Longest Day. It began with paddling a rubber raft through crashing waves, carrying it through the trees, completing a mission and walking the miles back through tear gas without masks. Somehow that sounds worse to me than brain surgery, but maybe it's because I know I can make it through it.

This day last year was my Longest Day. It was the scariest, most painful day of my life and I know I'll never forget it as long as I live. Right about now, I was finishing up my "stim test", where each electrode on my brain was reverse stimulated in turn to see what would happen. The doctors would press a button and my hand would jerk, or my eyes would move or my tongue would stick to the roof of my mouth and I couldn't breathe. Each time I heard one call a set of numbers to the other, I would wait for the shock and pray to God that nothing would happen. They were looking for my motor strip and I wanted so badly for it not to be under my seizure origin point, what they had come to call "the birthmark". I sat in my hospital bed, clutching the small, stuffed dog that my parents had gotten me in the Mayo Clinic gift shop. I was so scared. I focused on the sign my sister had made me that hung in my hospital room: We Love Our Erica. I traced the patterns with my eyes, drank in the colors and tried to stay calm.

In an hour and a half, my surgeon would come in and tell me that the birthmark was not on my motor strip, but right up against it. I was a candidate. I exhaled with my whole body, my whole spirit. I was a candidate. He told me that I could have the surgery, but there was a chance I would lose a good amount of sensation in my hand - I would have a hard time knowing how much pressure was needed to hold a fork, being able to recognize the shape of my wallet in my purse by touch. There was a chance I would lose some speech, some short term memory, though it wasn't very likely. "Do you still want to do it?" I paused for only a moment, because what stood firmly in my mind was that nothing had gone wrong yet, so there was no way it would start now. I lifted my right hand, covered in white tape to hold the IV in place, to the plastic table over my lap and signed the consent form.

Not until about 4pm was I finally brought down to the operating room. I remember a cleaning woman in the elevator as I was rolled in by a nurse. I said, "Hi, how are you?" as cheerily as I could. She looked startled but then smiled. I tried to be brave in the pre-op room among dozens of other patients in blue and white polkadotted smocks, lying in rough, white sheets on a plastic bed. It was easier the first time, when I didn't know what would happen, when I had no idea what I was getting myself into. Somehow, this time it was terrifying. A couple nice doctors, nurses and techs stopped by to explain a few last details, but I didn't care about the information, I just wanted their smiles and calming voices. A few layed hands on my shoulder or foot, and just a simple touch like that brought a sliver of peace.

The OR was brighter, more sterile, more ominous and more lonely than I'd remembered. Cindy wasn't there this time; she'd placed electrodes on my scalp for my monitoring the day after Thanksgiving and the grid on my brain during my first surgery, but since they were removing it, a much less delicate process, she was somewhere else. I didn't know anyone there. It was like the first day of kindergarten: terrifying and, as yet, the biggest day of my life. One man in blue scrubs came closer and smiled through his mask; he said Cindy had told him to take good care of me. I relaxed a little as he held my left hand and someone else took my right while a clear mask was lowered over my face.

I try to forget what happened when I woke up in post-op recovery. I try to block out the pain that was so terrible I screamed; the way I writhed on the bed, the bright light that stared me down when the doctors made me open my eyes, their hushed voices when I sobbed that my pain was a twelve and begged them to help me. That scene is burned into me. It felt like an eternity as the hysterical crying I realized was my own melted to a pleading whimper. This hadn't happened after my first surgery. Couldn't anyone help me? What went wrong?

Last night it came to me like it sometimes does. A wave of remembered trauma, pain, relief and gratitude smashed over me, its full force against my mind. Wet tears slid down my face and as my rock held me in his arms, they turned to sobs that wracked my body and tore sounds from my throat despite my efforts to stifle them. I could see the wet collecting on the collar of John's blue shirt, turning it dark and shiny. I began to calm down at the insistence of my nose that it needed a tissue. I went through three before I could breathe steadily again. I clutched John's back and laid my head on his chest. "It's okay, baby, it's gonna be okay. You've been through a lot." I have.

Thank you to everyone; all of you who have been here for me, with me. Thank you, God, for the blessings you've given me. Thank you, John, for listening, understanding and supporting me every day. Thank you, mom and dad, for holding my hands; sitting quietly when every little noise hurt; making up stories when I was scared; spoon-feeding me; forcing me to sit up, stand and walk despite my dirty looks and petulance; fixing oatmeal and fruit every morning; re-teaching me how to knit so I could regain the function of my hand; making me take naps even when I didn't want to; taking me on slow walks around the block in freezing cold January weather; but most of all, teaching me how to live the kind of life that makes me happy and fulfilled.

John asked me what I want to do tonight to commemorate my anniversary. I haven't decided yet whether I want to go out and celebrate or stay in and remember. Either way, I'll remain, as always, eternally grateful.

3 comments:

  1. Erica, I read with fear & overwhelming intrigue & a sense of kinship.......as you describe what my life this year of 2012 will look like. The fear of the incredibly talented neurosurgeons fiddling about in your brain in some hope to rid you of seizures, whilst trusting they don't take that little bit too much which changes life a little bit too much for the worse.......such a tough decision to make! Your story is so similar to mine except I have problems with the whole of my R leg. Mine is more sensory than motor due to a parietal lesion, where the seizure spreads forward. I will continue to read with great interest!

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  2. I totally respect this blog post. Coming from a personal point of view, you really touch my heart. I am in the process of figuring out whether I would like to have a brain surgery or not. I'm gnawing at my nails (and also writing a blog about it in between each chew) trying to figure out if it is truly the answer. Keep writing... I love it!

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  3. Interesting to read on from the Title it starts with. Would like to hear such interesting stories from your blog.

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