5.19.2012

day forty-seven

Yesterday was day forty-seven—forty-seven days since Calvin’s last observed grand mal seizure. It was also the day that Calvin went on his first extended field trip to the Boothbay Botanical Gardens with his fellow first-graders. I agonized about whether to go along to help his one-on-one Mary and to be there in case something went wrong since the gardens are nearly an hour away. My decision was made no easier when Calvin awoke slightly out of sorts, not eating well and with a sub-normal temp. But by the time the bus came he seemed better, so I sent him, wanting him to have the experience, needing some time away from him and wanting to avoid imposing my strict and controlling caregiver ways on Mary, who is wonderful. But the decision didn’t sit well with me.

Throughout the day, Mary sent me photos of Calvin from her smartphone. In nearly all of them he appeared lack-luster and fatigued, particularly in comparison to his bright-eyed, smiling peers. I began to doubt my decision further and became worried to the core.

The night before I’d described my worry, of seizures or other injuries Calvin might sustain, to my friend Arnd. I told him how it reminded me of those old western films where a cowboy goes in for a shave and the barber—the bad guy—presses the long blade hard into the cowboy's neck, but without cutting. I feel that pressure constantly—that ceaseless tension of worry. It almost never escapes me.

But Calvin came home from the field trip fine and the nurse took care of him while I tended to chores. Later, my friend Sarah and I made our way to Lilee’s Public House. We sat at the bar and openly lamented its impending closure, then wondered what we’d do without our most favorite watering hole and burger joint. She told me not to let it bum me out too much. She knew I had enough to worry about. But it bummed me out nevertheless.

At some point halfway through our Caesar salad I realized the cell phone was in my purse where I might not be able to hear it. So reaching down to transfer it to my pocket I realized it was ringing. It was the nurse. “Calvin had a seizure,” she said, and I could hear him crying in the background. “I’ll be right home,” I replied.

Sarah jumped off of her stool and told the bartenders, who know of Calvin’s epilepsy, that something was wrong with my boy. They simply told us to go. We grabbed our purses and ran out the door holding hands across the street. Approaching drivers must have seen the worried tears in my eyes and the urgency of our steps so they stopped in the intersection for us to cross.

Once home, Calvin was still crying. I can only think that after three minutes of electricity burning through his brain—during much of which he doesn't breath—he must have raging headaches or migraines that cause his grief. So the nurse had given him some rectal acetaminophen. And, as the dutiful boy he is, he took his six anticonvulsant tablets with yogurt and then a little liquid medicine in water before we laid him in his bed. He fell asleep as soon as his head hit the pillow, and Sarah went back to the pub and squared our tab.

Yesterday was day forty-seven. Today is day one.

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Calvin during a seizure

7 comments:

  1. Dear Christy,
    I'm sorry to hear about Calvin's seizure. Hope he's feeling better today and hoping it will be a seizure free Saturday.
    ciao
    Federica

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  2. thank you federica. i always love to know you are out there for me. xo

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    1. I'm SOO sorry to hear about the seizure. That is so hard and I am sending positive energy in your direction. I wanted to pass on a realization that made my last few years with epilepsy so much more manageable. Early in high school I had countdowns everywhere--in my mind, on my computer. The categories in my ical calendar were "homework/school, life, and seizures" and that was indicative of the way I thought about epilepsy--it was something separate from the rest of my life that had to be quantified and then fought. Before this year, I never made it past 15 on my seizure count, so the fight was a little bit futile. (In that specific way--the fight against epilepsy is never futile! Ahh!) During my junior year of high school I took a class on Buddhist Meditation at Smith and was blessed with the entrance of an incredibly articulate professor and a supportive Zen priestess into my life. I had seizure after seizure in their class, which became a little metaphoric because their perspective was integral in how I came to view my epilepsy from a new vantage point. That year, when I began pouring through Buddhist sutras I came across a speech that the Buddha had given when he was very sick. Someone asked him how he dealt with his sickness and he responded, somewhat enigmatically, "Sun-faced Buddha, moon-faced Buddha." I think that he was suggesting that he accepted the sickness because the sickness was part of him, who he respected. I started thinking about moving into a place of acknowledging a greater integration of my seizures into my being. So the first thing I did to that end was delete my "epilepsy log" from my computer (I would write in a journal if I felt I noticed any kind of correlation with triggers) and I stopped counting the days between my seizures because every time I had another one I felt that I had lost some unsaid battle and grieved that I had to start over from ground zero. It took less energy to think about my seizures as part of who I was. Like the Buddha, I loved who I was and so I tried not to hate this part of my self. And then after 18 years of calendars, I have finally gained seizure freedom. I think there is some significance to the idea that it was when I finally came to a greater level of acceptance I can begin to count again. I know so well the grief of seizures breaking through again and I'm sorry that you are going through that now. Take care of yourself and drink lots of tea :)
      ~Julianna

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  3. dear julianna,
    thank you again for your insights. funny, i had just decided to give up the count. i try to control so many things and i think i end up making myself crazy with this counting thing. i want to be more free. i know it will make a difference.
    xo,
    christy

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  4. Christy, Idon't know what to say. we send our love and light a candle for our sweet friend Calvin. KIM

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  5. Hey Christy, I was thrilled to see Calvin at the Botanical Gardens! He did seem tired, but I must tell you of a few moments of his happiness. Sadie (who ADORES Calvin) sat with him to take some photos and say hello. He was snuggling up with her, chewing on her hair, smelling her neck, and clearly enjoying it! She did too. As we walked away, she said, "I love the way you can always tell when Calvin is happy. He's the goofiest guy in my class, thats why he's the only boy I like." Im so sorry his happy day ended with a seizure, sucky.

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  6. dear elsa,
    just getting around to replying. thank you so much for writing this. what a great thing to hear your daughter say. it made my day.
    xo, christy

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