My Date Night with Epilepsy

The marble felt cold on my forehead in contrast to the warm water running down my back. My left hand braced on one wall and my right slowly sliding down the other, and I was sobbing. Wracking sobs that shook my body, a release of tears down my cheeks, slobber dripped from my lips. It was ugly; I felt ugly. And frustrated, angry, and disappointed. I was defeated.

I looked at the wall where my palm rested and saw small rivulets of black wash from my hands- remnants of my mascara being wiped from my face only minutes before in the car. In fact, 30 minutes before, I was laughing in a restaurant with friends, listening to their stories of travel and enjoying my first “normal” night out with my husband and another couple in months.

I’d had a little bit of a rough afternoon that day with a few twitches. So disheartening since I’ve improved so much with adding the Keppra and it had been a week since my last twitch. I guess it should’ve been my sign to cancel, reschedule for a better, more predictably “stable” evening but you can only cancel so much and I’d been looking forward to this freedom for a while. So I did my hair, dressed cute like I used to and actually put make-up on for one of the few times in the last couple months. I felt like an adult. I felt alive. I felt back to normal. I waved to our now rarely used babysitter and hopped into the Uber. Alone. Not as a Mommy, not as a prisoner, as a woman going to meet friends and her hubby after work for drinks and dinner. For laughter and normalcy.

Fast forward, drinks were great (which, by the way, have never been a trigger for me) and dinner started well but then it hit me, right in the middle of their funny anecdote about a little animal visiting their remote, romantic hut (newlyweds :)), and I started to tingle. I focused on breathing and although I felt my right eye starting to cross, I returned to the conversation unscathed. No one the wiser. But I let it get to me; there it was- the fear. It took up its old residence and I could feel the weight. Soon there was one twitch, conversation paused, I breathed, my husband putting an arm around me as I buried my face in his shoulder. (I hate it when people see my face twitch.) Ah, and it was done. I felt embarrassed and apologized as I always do, and the conversation moved forward. More laughs, more normalcy.

I can do this.

Shortly after, the second one came and lasting a little longer than before, my husband knew it was time to leave. He grabbed me, both of us making apologies, and we hurried out as calmly and normally as possible. His arm around me, I clinging to his side. I felt the rush of cold air hit my face as we entered the ally and filled my lungs with it. Relief and sadness. My husband holding me, shhhh-ing my apologies and tucking me into the car. I broke. The sadness of being defeated and the fear of being “exposed” in front of friends and strangers gave way to sobs. And I cried and cried. Frustrated and fearful of a big one, I curled into myself, into the ache, and just gave in. It came in waves and I didn’t stop them. My husband’s seen it all, knows my experiences and feelings better than anyone else but I’ve always tried not to cry in front of him. I know he feels as helpless as I do… but I can’t always play optimistic and hopeful. Sometimes I just don’t want to be strong…

We were about to make a right hand turn off PCH towards home, when I told him to keep driving. I didn’t want to go home yet. It was still early and although I knew we weren’t going to be getting out of the car and my face looked like something out of the zombie apocalypse, I couldn’t go back just yet. Even being in the car going anywhere but headed nowhere was better than going home. He made a joke and I laughed and we moved forward, eventually stopping for gas and then I told him to turn around.

I cried the whole time. I couldn’t stop and I didn’t want to stop. I needed to empty that pain, succumb to a moment of self-pity and heartbreak. Bare myself in front of the only other one I knew would understand. Knew I needed to let go.

I tried to clean my face a bit before walking in and seeing the sitter. I’m sure she drove home in wonder as I headed to the shower and my husband to start the bedtime ritual with our son.

And there I was, back to tears, with U2 playing softly in the background, watching those black lines mar the white marble… Just as the water began to turn cold, my son ran in- giggling- followed by my husband and said goodnight. I would normally pop my head out and give him a kiss but I stayed behind the curtain and said “goodnight, lovebug.” He replied, “Are you feeling okay Mom?” Then, “Mom, you’re my best friend in the whole wide world,” and he ran out to find Daddy. I melted from his sweetness. By now the water was freezing but I hadn’t wanted him to see me like I was; he’s old enough and smart enough to understand hurt. To internalize that it means something bad but not exactly what. We don’t shelter him, yet if I can spare him concern, I’d prefer to. And I needed this moment for myself.

After I dressed, I went to his room instead and crawled in bed with him. He slid his little body over to mine and whispered in the darkness, “cuddle with me Mom,” and we slept huddled together all night… peacefully.

I know my story pales by leaps and bounds with others suffering from Epilepsy and the massive suffering present in our world, that’s why I always try to share only my optimism and often don’t share these kinds of posts, but I came to the conclusion last night that it’s okay to take a moment for yourself. To mourn your situation even when it pales in comparison to others, for life isn’t perfect, I’m not perfect- I never expect either to be.

Sometimes you just need to let go. And similar to those black rivulets, life will slowly wash the pain away…

I know it. :)

3 thoughts on “My Date Night with Epilepsy

  1. booklovingmama says:

    It may not be as bad as others, but it’s what you have to deal with. It is the nuisance in your life and it’s natural to struggle with it.
    Mine isn’t as bad as other either, I don’t have any other disabilities like some do and I tend to only have 3 Grand mals a week (although I get plenty of others) but I still struggle with what I do get and to fit normal life around it sometimes.
    The post was really inspiring and your really strong :)
    Xx

    Like

  2. sarahsmithstorm says:

    Thank you for being brave and writing for the rest of us who fight this.. Hugs!! Oh, I’d love to have coffee with you!

    Like

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