Things Not to Say

part 2,349,233 in a series

apolytus: the moment you realize you are changing as a person, finally outgrowing your old problems like a reptile shedding its skin, already able to twist back around and chuckle at this weirdly antiquated caricature of yourself that will soon come off completely.

The Dictionary of Obscure Sorrows, John Koenig

Carl and I took Sophie for an appointment with The Osteopath this afternoon. We hadn’t been in nearly a year, and Sophie was calm and seemed to really relax into the experience. Sophie’s been seeing an osteopath her entire life, and during today’s visit, the doctor and I spent a good amount of time reminiscing about Dr. Viola Frymann, the OG, as they say, the person who literally changed the course of my and Sophie’s life. That’s another story, though. One of the things I recalled was how Dr. Frymann insisted that NO ONE speak about Sophie’s condition in front of her, that the words she heard about herself should be positive and affirming and that there were ways to include Sophie in the conversation that respected her and her integrity. Dr. Frymann believed in the dignity inherent in every human soul, and her entire life was a testament to healing. She treated children from all over the world well into her nineties — some of the most compromised children with the bleakest of prognoses — and each child she treated was holy and worthy of promise, filled with potential. I can honestly say that she was the single biggest influence on how I began to perceive disability and identity. It was a lot of years ago — another lifetime, really — but I can conjure exactly who I was in those years. I can feel it, in my bones.

After the osteopath visit, we drove west a couple of miles in hopes of catching a good sunset. I fed Sophie fish and chips at the cafe on the beach, and then we strolled a bit and finally stood and watched the giant orange orb drop into the Pacific, streaking the sky with pinks and ice-cream swirls. We walked slowly back to the car, and just as we reached it, a woman in a car parked next to us, leaned her head out the window and asked What’s wrong with her? I looked up at Carl, and he looked back at me and she asked again, this time louder, What’s wrong with her? I was going through the motions of putting Sophie into the car, and there’s a lot to do and I knew at once that something might be wrong with this woman because she repeated the question again and said something or other about being paralyzed herself, and then I said something something brain injury and then nothing’s wrong with her, we’re all good and I was busy busy opening doors, tieing Sophie’s chair down giving Sophie a drink, putting my bag on the front seat and the lady kept talking asking whether I was offended at the question, on and on and I said nothing just kept smiling or maybe it was a rictus and got in the car and faced forward. Carl went back down with his camera to catch the last bits of sun streak in the sky and I cracked the window and heard the woman talking to another couple who’d evidently walked up from the beach and all was normal in their conversation so maybe there was nothing wrong with her after all and I would be justified if I’d just swung a giant ax her way and lopped off her head.

Later, I went over it with Carl and he made the tiniest remark with his customary sweet humor but whose inference was that I had showed my displeasure or anger and I immediately felt ashamed and defensive even as he was as kind as he ever is and it rankled inside me. I’ve always wanted to be a saint, to be a perfect caregiver, you see, even as I know my tongue is sharper than a serpent’s. It rankled inside of me but I acknowledged that desire and let it go. I am tired of all of it. I have no desire to educate others, to speak kindly or even think kindly about this kind of thing. The word rankle. What’s wrong with you sat inside of me all of two to three hours and disappeared entirely when I shared the story with a good friend who also has a child with awful seizures and the rest of it and she assured me that we’re all just tired of it tired of making nice and being helpful and educating others and protecting our children. That’s all, she said. That’s all it is.

hem-jawed (adj.) : feeling trapped inside your own language, struggling to shake away the baggage weighing down certain words, unable to break out of its age-old structures and melodies, frustrated that the scattering of verbal pigments on its palette could never quite capture the colors in your head.