Thursday, March 24, 2016

The First Night

     There was a regular videotape running the whole time, too, but it stayed on the big machine, pointed toward my bed. I don't think it recorded sounds, but that doesn't really matter. Nothing mattered at that point except somehow finding my way back to myself...and getting rest.
     I don't remember the first person brought in to keep an eye on the crazy lady I was, but the second one was not a good match for me that night. She was ready to sit down and chat, pulled her chair right up next to my bed, but I was having none of that.
     When the nurse asked her to keep an eye on me from further away, not so close to my bedside, it must've hurt  the woman's feelings because she pouted. I can spot a fellow pouter a mile away because I've been doing it myself forever...since those early days of stomping out to the apple orchard to release my anger.
     Later, when I was myself again, she came back for another turn and I discovered that she was in her own kind of pain, constantly. We even hugged before saying goodbye on my last day there, two survivors wishing each other well on our separate journeys.
     But that first night, I turned my back away and curled up into a ball, like my my dog and cat and snake do when they sleep. I wanted to shut everything out and find the deep sleep state that brings my dreams to me.
     It was nowhere to be found, not with Fycompa poisoning my brain and a bed that was designed to prevent bedsores...Every few minutes, it wiggled. The moving bed wasn't as sleep-disruptive as the noise I could hear beforehand, coming from inside it.
     At first, I thought the noise came from the EEG monitor and meant that one of my seizures was finally being captured, after years of doctors trying without success. I should probably point out that neurologists want patients to be sleep-deprived because then we are more likely to seize.
     My wiggling bed wasn't a major concern to anyone but me.
     Hearing that noise was one of many "letdowns" during my stay at Walter Reed Medical Center. I suddenly sat-up, excited at the idea that my seizures had registered on the type of machine that always misses them. But it was only my wiggly bed.
     The seizures were as evasive as ever. There would be no "early release for seizing on EEG."
     At some point, I realized there was a new person by my bed, further away, by the windows I really wanted to sneak out of at that point. It would've taken a ladder, so I knew that option was out. I fly in my dreams and have no desire to try it in real life, not that way.
      I first thought the new sitter was a young psychiatrist but he told me he was a medical social worker. To me, he quickly became an angel, the person who got me through that first horrible night when my mind kept going in the same dark places, scary thoughts circling my brain like buzzards over a dying calf.
     The medical social worker reminded me of my oldest nephew, Wayne, young and strong. However, he talked, and more importantly, listened, like someone wise beyond his years. Every time I started to ruminate on the same irrational, dark thoughts, he redirected me back to the here and now.
     Even a hospital room with a moving bed and no privacy was better than where Fycompa took me. The seizures take me beyond heaven; that drug was leading me into hell.
     Within a couple of hours, he built the kind of trust and communication it took months for me to have with my first autism students, the ones I followed into their classes as an instructional assistant to help them fit in more easily.
     For example, when my voice grew too loud, he made a motion with his hand and I lowered my volume, realizing I was acting like manic Pam again.
      By that point, he had heard some of my most painful stories, and I had to ask, "How do you do this day after day and not take it home with you, in your own head?"
     "I've seen much worse," was his quiet response.
     There was one more question I needed answered before his shift ended. "How did you end up stuck with me tonight?"
      "I volunteered," he said. My heart exploded with love and gratitude for him.
      That night felt like 30 years of therapy. I wanted to hug him and never let go but instead, I simply shook his hand and said, "Thank you."