Episode 357: I Can't Go On; I'll Go On - Anna's Dad

There is a line from Samuel Beckett that a friend whispered to Stephen outside the hospital room where his wife Kate was dying. I can't go on. I'll go on. It became, as Stephen says in his memoir, a pretty accurate summary of his life after Kate and Anna. Anna came home from China at seven months old, a charming, sweet, luminously happy little girl who had a gift for drawing people to her. Children would flock to her on the playground, sensing something in her they could not name. She loved music, loved to sing, loved every meal she was ever given. She also had a rare and devastating neurogenetic disorder called Niemann-Pick Type C, diagnosed when she was five, after a fall and a head bleed led doctors to notice her enlarged liver and spleen. They told Stephen and Kate she would likely not live past thirteen. She lived to be twenty. Kate died of lung cancer in March of 2012, three years before Anna. She walked into the hospital on her own, refused to let Stephen call an ambulance, would not let him help her through the door. Doctors were puzzled by how a woman with a tumor wrapped around her lung could still be walking around. It was, Stephen says quietly, very much on brand for her. He was left to grieve his wife while watching his daughter continue her slow decline, and to hold his younger daughter Jane together through all of it. He did not do it gracefully. He did it the only way anyone does it. Imperfectly. One foot, then the other. I recognized something in Stephen's words that I have carried in my own grief. There were so many days when I turned to my dear friend and said, I can't do this. And every time, she looked right back at me and said, Marcy, you are doing this. That is the whole of it, right there. You feel like you cannot, and somehow, impossibly, you do. Stephen's memoir, A Ribbon for Your Hair, captures that truth with a writer's precision and a father's aching heart. He reflects on the weather of grief, how you live in it, how sometimes you notice it and sometimes it is just there. He shares the grief advice he received over the years, much of it well-meaning, almost none of it useful. And he stands on a sidewalk outside the apartment where he and Kate were once happy, weeping, while strangers walk past him as if nothing in the world has changed. Because for them, nothing has. That is grief's loneliest truth. He survived it because he had to. Because Jane needed him. Because that is what we do. I can't go on. I'll go on. A Ribbon for Your Hair is available on Amazon and wherever books are sold.