Date Night: Public Dinners & Private Battles

I panicked a little bit. I felt they were all staring at me although they weren’t – it was just a bunch of words flittering around me as I twitched and floated in my own space. Nobody noticed anything but I felt it all descend upon me. The black around me, overwhelming background noise and my inability to form coherent sentences. I wished it away. As always… But it’s not something you can ever wish away. And that’s what made me hate it most in that moment.

I felt it as soon as we sat down. And a night I was so excited about; having a triple date – parents out without kids, a new combination of people. All I wanted was to have fun and be perceived as fun. The unavoidable human insecurities of perception, ugh. But I loved the two couples we went out with and the whole day I looked forward to having a date night with my husband, filled with laughter, void of life’s weight.

But then it was there… First a tingle, a slight numbness, a chill up my spine. Not something from the weather, or a joke, or the electric feeling of a first date. I knew what it was – and the skip in the beat of my heart told me I couldn’t avoid my nemesis. It was the slow crawl of cold up through my body… The erie flush down my arms, like water running under one’s skin. The twitching of my eyes as I looked in the opposite direction. And then I felt that one thing that I haven’t felt in the almost 2 decades since being diagnosed with epilepsy, with the exception of the most recent months on these new meds… It was the now familiar hallucinogenic aspect of my lips feeling heavy, the lower part of my face hanging and not being able to catch the drool from my lips. Hold the liquid of the drink in my mouth.

What do you think it feels like when you touch your own lips and realize actuality is much different than what you imagine’s happening? When you try to look somebody in the face, be normal, and at the same time feel slobber escape from one’s mouth; it’s surreal. Nothing induces self-consciousness than being that unconscious of what your body is doing or may do.

I had to sit closer to my husband… Being near to his calming influence in my life. I didn’t want to go home. We were dressed up, on a date, out to have fun. I wanted to make this night count. I wanted to see if we gelled with these two couples, and I hoped so.

The girls noticed, then everyone noticed. My heart sunk and I took a deep breath realizing we could leave or I could chance it. I wanted to take a chance. I needed to take a chance, if only regarding a simple dinner. But it’s my everyday life. This decision you make in the moment… Whose moment is it – my body’s or my own? Out of stubbornness, I refused to give up control. Something so minuscule and seemingly insignificant to anyone who doesn’t battle for his/her own self-sufficiency.

Figuratively, once the awkward responses to your incapacity begin, you try to run as though in an M. Night Shyamalan horror movie… hands plastered over one’s mouth to muffle any possible whimpers, searching for thin air to disappear into. One hides behind a smile and the continuation of conversation. So much chaos going on in one’s body never seen on the surface. It’s ironic, once you’re 37, there shouldn’t be any resemblance to high school. But you think about it – and it’s all the same. All you want is to be involved, included, and light-hearted. Fun.  

We stayed and they fortunately lessened. I relaxed and the chills dissipated. Later I wondered though, why this night did I feel this way? Why at 8:15 rather than 10 PM, 11 PM, later? Tonight I thought you’d cut me a little slack… save the broken pieces for the wee a.m. hours when we’re used to cleaning up after you. Why not the usual cluster at 1 AM, 2 AM, etc.? I feel so safe, to the point where I can manage, and then it comes back. In public, always in public. And that’s the problem… you begin to feel safe.

It never goes away. You, Epilepsy, return as a reminder just when comfort starts to set in. And no matter how long I spend doing my make-up, picking the right clothes, curling my hair, you are under my skin – in my brain – and in control of all else…

 

2 thoughts on “Date Night: Public Dinners & Private Battles

  1. In Megan's Shoes... says:

    Oh my gosh, my heart goes out to you and your son… I know the frustration and hurt he must feel and my family knows the loss for understanding you feel. THANK YOU for reaching out; I will keep you both in my prayers… Your fight for your son is incredibly brave and he sounds blessed to have you. Sending you lots of strength… 💜💜💜

    Like

  2. christopher velona says:

    You write so amazing…tears of frustration and empathy roll down my face for you…and my son…He is 13…and cant ever tell me what is happening from his episodes. I found you on twitter and have not been able to stop reading your blogs. Thank you for sharing these gut wrenching feelings…it has confirmed my fears as to what he may go through. I am in a battle myself with my son Sebastian. He was mis-diagnosed for a few years only to recently learn that he has Battens Disease. The symptoms are Seizures, blindness and neurological disorders on many levels. I know it sounds odd to find comfort in your words …but as a parent I do. I appreciate your courage hear.
    Truely,
    Christopher Velona
    Director~Project Sebastian

    Liked by 1 person

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