The Still Point of the Turning World by Emily Rapp Black

Author:Emily Rapp Black [Black, Emily Rapp]
Language: eng
Format: epub
Publisher: Penguin Publishing Group
Published: 2013-03-07T08:00:00+00:00

12

At the end of March I traveled to Boston to attend the National Tay-Sachs and Allied Disorders Association family conference, where I met other children like Ronan and other mothers in my situation. I stayed with friends I’d known for fifteen years. In the mornings I woke to the sound of Weber’s three-year-old daughter, Violet, knocking on my door. In the afternoons I held the hands of kids with Tay-Sachs, Sandhoff, Canavan and other terminal diseases. I missed Ronan and longed to hold him. On the way to the airport after the conference ended, I told my friend Kate that it was almost impossible to imagine feeling this way forever, this ache. She put one arm around me and drove with one hand.

After a brief scare over the lack of a ticket at Logan, and a very nice woman who finally fixed the problem for exactly $967 less than she was supposed to, I was waiting at the gate when a woman began crying hysterically and screaming, saying You can’t do this to me again. You’re ruining my life. Oh my God, I can’t believe this. I literally thought somebody had died. As it turned out, the woman had been told she needed to check her luggage because the overhead bins were full, but the last time she’d flown the airline had ruined her laptop. I had zero sympathy for her as she boarded the plane in a teary huff. I watched her sit down in the row in front of me, still squalling, still hysterical, and thought about offering her a Xanax or perhaps the weekend schedule for the Tay-Sachs family conference: symptom management, secretion control, choosing an end-of-life plan, memorials, support groups for grieving parents at different stages of a terminal disease.

The man sitting next to me pointed at the back of her seat and mouthed, “Freak.” I nodded. The woman sitting next to her had a gentler response. She asked the woman if she was okay, handed her a tissue, and then the real story came out. For years the crying woman had been homeless, jobless, and her computer, her laptop, the one thing that had allowed her some freedom, some ability to look for jobs, had been ruined when she flew home for a family funeral with money a friend had given her as a gift. The man next to me was still chuckling, but I was not. I was no longer in the mood for his jeers or my complicity in them moments before. I thought about what people might say about Ronan at the later stages, some of the names they might call him, the way I had used the word “retarded” in the past; the way people regard difference, including mine—staring at me when I wore shorts, letting their jaws drop at public pools when I took the leg off, the great anxiety about the body during any sexual encounter. The great “reveal” of showing another person I am not what you thought; I am this.

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