I stumble around the house with wild hair and a rueful grin. Eight o’frickin’ clock, I mutter. I spy an e-mail from Pat Reynolds and shoot one back: Remind me not to eat gluten again. Rough night.
With a timid motion, I sidle down the stairs. The dog emerges from her domain, wiggles past me and scurries into the kitchen. I slowly follow, opening the backdoor, shuddering with the onslaught of frigid air. Have at it, I tell her. When she’s navigated the icy stairs down to the yard, I turn to heat a cup of coffee. A few minutes later, she mirrors my ungainly pace in reverse route. I hasten to open the door, promising her that I’ll salt the steps today. As though she understands English, I laugh to myself. But the way she eyes me, I think she might. It seems to me she knows that I should have already tended to the clearing of her route.
I let myself eat pasta last night. Real pasta. With butter sauce and sauteed mushrooms at a restaurant in Liberty. I savored each slurp. I’ve been weaning myself from gluten because of its inflammatory properties, sort of like the fabled MS diet only I don’t have MS. I do have jangled nerves from my actual condition and truth told, they fare far better unglutenized.
You’d love my diagnosis. Neuro-transmission deficit associated with infantile onset of a post-viral-encephalitic condition. When I first got this mouth of marbles, the “post-viral encephalitic” part had not been added. Instead, the St. Louis neurologist called it “early onset of a condition of unknown etiology”.
They did so much for my young vocabulary, those doctors.
My mother stared at him when he described the findings resulting from a week’s hospitalization and a couple of botched spinal taps which left me shaking and numb. She turned to study her twelve-year old daughter, sixth of eight, as though she might see something in my eyes or the smattering of freckles across my nose.
She repeated what he’d intoned. Neuro-transmission deficit, she began. Associated with infantile onset. She stopped there and switched her gaze back to Dr. Burke. Her look hardened into a glare. She was sick when she was a baby. Three of my girls were sick at the same time but this one, she was the worst. I told them. I told them it meant something. I told them. She buried her face in her hands. The doctor didn’t move but I leaned over and patted her arm.
It’s okay, Mom. I don’t mind, I whispered. The doctor closed my chart and stood. He had nothing more to say. But my mother had questions and as she hammered him with them, he lowered his body back into the enormous leather chair and straightened his tie.
She had a hundred questions but he had only one answer: We don’t know. I thought about my brothers. I could hear them so clearly chortling: “We? We? What’s this ‘we’? You got a mouse in your pocket?” My mother would be helpless to restrain them. First it would be funny. Then we’d all stop laughing and turn in the doctor’s direction with one solid accusatory stare. Who’s this ‘we’? And why don’t they have any answers?
Mother gathered herself at last, and lifted her pocketbook from the floor. We both stood. This time the doctor remained seated, slumped in his chair. Its luxury could not save him from his failure. I avoided his eyes.
Mother worked her arm around my back and guided me to the door. She thanked him, then, backwards over her shoulder, her head twisted as she tried to get us away. Her voice sounded hollow and unsure. He finally rose and made his way around the desk, one hand outstretched as though to do something. Shake hers? Touch me? He had not even examined me in the hospital. He had not sullied his slim fingers. He’d left everything to minions — interns, and externs, and patient aides. I did not know any of them, nor did they know me. I skittered away from whatever he planned to do with that hand and ducked under my mother’s arm.
Later, at home, my mother talked in low tones to someone on the phone. Her sister, maybe; her father. Her mother. I never knew. I took myself to my bed and pretended to read, while the light faded, the evening ended, and my brothers played touch football in the backyard outside my window.
Here in Kansas City, in the present, the sixty-one year old version of that child listens to the garbage truck go down the street. I didn’t get my trash out or my recycle to the curb. Some things escape me. I tell myself, it’s okay, that mound of cardboard can be flattened and wait another week. I lift the coffee cup and laugh out loud. Remind me never to eat gluten again, I tell the dog. This time, I’m sure she has no clue what I’m saying. She yawns, and walks away. I realize that I’m on my own.
Submitted for your consideration: My wilder carefree self.