What is it like saying goodbye to a person who is still alive? What is it like never being able to say goodbye to that person, never being able to grasp or grieve their loss? You knew him or her—or yourself—well. Now you are learning about and accepting the new self or spouse or parent or child or friend or coworker. Now you are trying to learn them. Now you are trying to accept them. You are trying to know them—why they do what they do, how they feel, what you should do, how you feel. You are trying to learn and accept and know you.
Should you help them complete the sentence or remember the name? Should you, as the patient, let those around you locate that word hiding in an unnoticed location in the damaged brain?
Or maybe this is the only you—epilepsy has always been a part of your life.
This isn’t a collection of easy answers. It offers ideas but is mainly a confession of the adventure many of us endure. Each day. Each moment. Each word we work to remember.
This is my effort to adjust to the new me.
This is our effort to adjust to the new us.
So welcome to the journey of hidden mysteries and moments of desperation. Welcome to an adventure of pursuing shore while seeking rest amid the unknown. Welcome to swimming among waves in the deep. Welcome to firm rocks, unexpected shallow water, and a sight of unfamiliarity staring back. Welcome to the cold—of numb hands and feet and faces. Welcome to inner questions of endurance or surrender. Welcome to turbulence of fatigue, exhaustion. Welcome to the existence of feeling warn out, swimming with an ongoing desire to be back in bed. Welcome to the overwork of the brain’s functioning region that seeks to pick up the slack from the damaged portion’s inability to do its tasks. Welcome to confessions of how the brain battles events like its own versions of tsunamis, ridges, valleys, slopes, trenches, shelves, seamounts, cliffs, caves, arches, stacks, terraces, currents, and lagoons. Welcome to coming ashore to an unknown beach. Welcome to the world of disease and disability, the world of encephalitis and epilepsy, the world of scar tissue, the world of seizures and medication, the world of an electrical system under construction until forever.
Welcome to life Underwater.
From the book Underwater – Buy on Amazon.