All that potential seemed to bear out, too, in Orli, and then later in her sister, Hana — in their temperaments, in their curiosity and, eventually, in their resilience over three and a half years of terrible illness. Orli’s cancer diagnosis didn’t warp the wonder they shared; it sharpened it, made it less random. There were no minor experiences once so many hours of so many weeks had been swallowed up by hospital days of leaden time in airless, fluorescent-lit hallways, endless blood draws and treatments that at times seemed to draw more from the era of barbershop medicine than modern science. Joy could be found in a late-night city walk, a streaming series binge, a bowl of great ramen, a round of laughter, a perfect dandelion puff, a shareable tree swing or in unexpectedly adding an extra night to a vacation. Pride came in the hard-won knowledge Orli would impart to others in how to navigate some of the most impossible things a person can face.
I have struggled, since writing a eulogy for my 14-year-old, to use the past tense. How can I apply the past tense to someone so fully present? So fully herself, so fully formed, so insistently alive? When doctors asked her if it was really her wish to continue treatment, she replied, insistently and with exasperation, “Yes! You’ve given up on me!”
That said, Orli wasn’t fearless. She engaged with fear: She spoke to it, got under it, wanted to understand it, didn’t run from it. She insisted that we, her parents, sit with it and not lie to her about it. She did not want to die, contrary to the fallacy, seemingly held by some of our doctors, that her will to live might fade as her prospects dimmed. Even when cancer robbed her of so much personal agency, of moments of dignity, eventually of her mobility and even, frustratingly, some of her precious words, she did not want to leave this world behind.
In her last weeks, I understood, viscerally, why washing someone’s feet is a holy act.
As our world narrowed, no one could sufficiently explain how to help us — or her — contemplate, without rage or hysteria, the monstrous possibility of death at such a wrong age. We had so much forward momentum for so long, it seemed inconceivable.
Still, at some point, her sense of time seemed to shift: Where once she had talked about college, now she just wanted to go to high school. She asked me why I hadn’t yet enrolled her in summer camp. One visiting hospice doctor, at her bedside, asked her if she had any places she’d still like to see. She told him she wanted to go to Tokyo.