This post is part of the Epilepsy Blog Relay™. Follow along all month!
Michelle’s Story
Yesterday morning I felt the floor move, and instantly I was overcome with dread and uncertainty. In a fraction of a second multiple questions raced through my mind. Is this an aura? Or too much caffeine? Did I remember to take my levetiracetam? Do I rest on the floor now to minimize injury? Will a tonic-clonic event frighten my young daughter dancing in the next room? Did I stay up too late last night? What happens at work Monday when I can’t present due to a lacerated tongue? This sensory shift to hyperawareness and attendant cause-and-effect inventory is a familiar yet unwelcome situation for many living with epilepsy, no matter how far out we are from our initial diagnosis or how well-controlled our seizures.
Hyperawareness in a time of epilepsy
Sometimes the culprit of unsteadiness simply is a wobbly chair or, in my case here in Northern California, an earthquake with a magnitude of 3.9 several miles out in the Pacific Ocean. Yet similar to earthquake preparedness with emergency supplies (including extra antiepileptic medications), neighborhood support protocols, and family drills, an unanticipated event can happen that renders the best plans only marginally effective. Tectonic plates massively shift during rush hour, synapses misfire during unexpected strobe effects during a performance, or our metabolism stealthily changes just enough to cross the threshold into a need for revised medication management — and we find ourselves again vulnerable to forces we can only try our best to control. We grieve, analyze and recover, and then customize our lives accordingly. Sometimes the grief lingers, and sometimes I find the life customization process involves more engineering and specialists than the time before.
Conflicting states of hope and risk
In the San Francisco Bay Area, most live in constant and conflicting states of hope, risk minimization, and low-grade awareness of sudden, potentially harmful forces that resonates as a person living well (most of the time) with epilepsy. Safety and well-being are at the heart of many decisions yet we don’t regularly focus on the underlying conditions; instead, we give respect to the fissures, then we acknowledge the risks and prepare in earnest with neighbors and experts as best as we are able. “If the ground shakes,” most in the Bay Area think “then, earthquake” — though I suspect a few of us first think “then, seizure.” There is an immeasurable comfort knowing that unusual algorithm is shared, and believe that connecting virtually with others living with epilepsy – especially during the times of reconfiguration – gives us the expansive neighborhood support response when the grounds inevitably shift within. With a milestone birthday around the corner, I am inspired to enter the new year meeting, supporting, and connecting with residents living in our virtual ‘hood.
NEXT UP: Be sure to check out the next post tomorrow at https://livingwellwithepilepsy.com.
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