Your First TC
You’re in the kitchen, narrating, Telling us, your mom and I, the story of your day. I’m not looking at you, Listening as I focus on a task at the kitchen table, As we prep for dinner. I hear it first. The normal rhythm of your voice, With its recurrent underlying “buzzing,” created by the VNS in your chest, beneath the skin, Your vagus nerve stimulation device, Your “cybernetic” implant. I hear that normal rhythm abruptly change to A single syllable, a single sound. Repeated… rapidly… I turn my gaze, And see your mouth trying to move, Fighting against your jaw as it clenches, Making that disconcerting sound, A sound that doesn’t belong in conversation. I see your body tense, Even through your hoodie and sweats. I see your hands begin to ball in fists, And your arms bend at the elbows. I see your body start to jerk, And your eyes roll back. I see you crumple to the floor. I feel myself moving towards you. I see myself stopping your head, From hitting too hard against the tile. All the while my brain, Is still back at the table, Half focused on the previous task. Until I hear your mother’s voice, “It’s a grand mal! He’s having a grand mal!” The poster child of epileptic seizures. What everyone thinks of, When they hear the word epilepsy, Also known as tonic clonic [TC] seizures. And with that verbal slap from your mother, My brain has caught up, Now fully staring at you through my eyes. You straighten out, body convulsing, Eyes rolled back, Teeth and jaw firmly clenched, Air hissing through your teeth, My hand under your head. My brain may have caught up, But it’s not firing on all cylinders. “Roll him on his side” your mom instructs. I do. I roll you to face me, Cradled against me, Hand still under your head, As the saliva, now able to escape, Flows from between clenched teeth, Pooling on the tile beneath your head. 20 seconds of this? 30 seconds? We’re not sure. Your mom retrieves the VNS magnet, And swipes it across your VNS to activate it, Assuming what’s good for absence and myoclonic seizures, Is good for tonic clonic seizures. “Wait!” I exclaimed. “Doesn’t that stop it for a while?” “Oh shit,” mom said. “I don’t remember now.” “Fuck! I don’t remember either!” [Swiping does activate it outside of the normal cycle], [Holding it over the VNS for a few seconds pauses it]. The Three Stooges nature of our exchange, Would feed some dark humor later, But in the moment, Only added to our fear and rising panic. The convulsions finally stop, After 30 seconds, After forever. Your body begins to relax. Your breathing slows, Though teeth and jaw remain clenched, For a minute or two more. Mom fetches your rescue med, Wondering if we should give it to you, But we can’t get it through clenched teeth. [Forgetting the tablet would dissolve between cheek and gum], [Forgetting it’s only really needed after 5 minutes], [Forgetting everything we learned about tonic clonic seizures], [When you first developed absence seizures so many years ago]. I stroke your hair with my free hand, Repeating your name, Rubbing your forehead with the thumb of my other hand, That’s still holding up your head. Your eyelids start to flutter. Your eyes alternating from looking ahead and rolling back, As your brain starts the long reboot process. Mom calls 911. I vaguely remember us asking each other if we should. Then mom just did, It was your first TC, We needed to make sure that’s all it was. [yeah, just a TC, that’s all], And we were scared. I was still cradling you when they arrived, Holding your head, stroking your hair, Talking to you, Watching your awareness slowly come back, Imagining a rotating hourglass icon in your eyes, Impatiently waiting for the reboot to complete. They checked you over, Vitals all good, Seemed a textbook TC, Reboot proceeding within normal parameters. So, we opted to drive you to the emergency room ourselves. Mom would have to sit next to you, As holding yourself up was a struggle, Your body having undergone, The equivalent of running a marathon. But that’s when your sibling came home, To a firetruck, to an ambulance, Parked in front of the house. The terrible things they imagined, The panic they initially felt. Then we had to leave. We told them they could come with us. They said no, but they were in shock, So was mom. So was I. We didn’t think to have them follow in the other car. They wouldn’t have had to stay until you were released, [Midnight, as it turned out]. We texted them from the hospital, But your sibling was back home, With runaway thoughts, In an empty house, Afraid for you. Thankfully, they had a friend to text with. You’ve had two TCs since, And your mom and I have trouble sleeping, Worrying you’ll have one on your back, in your sleep, Worrying at every thump and bump we hear, Worrying the med modifications won’t take care of it, Worrying about what your new normal will be. But you keep going, Going to school, crewing for the musical, Trying to live your life. Despite the seizures, Despite the med side effects – the fatigue and nausea, Despite the anxiety, the worry, and sadness, Despite the frustration and anger, You keep going. And there’s reason to think that, The med adjustments will control the TCs. So, we’re hopeful, As we impatiently wait, To get to full dosage, And make other lifestyle changes. You’ve been burdened with challenges, Most will never imagine. But the amazing mix of, Empathy, creativity, humor, Steadfastness, strength, and Resiliency, That is you, Will help you face, Will help you stare down, Whatever oceans of tribulations life throws at you, [Along with your community]. Epilepsy be damned, [Transphobia too, for that matter].
Gemma ⭐️🔰🇺🇸 🇵🇭 🎐
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