feb. 14, 2020: PSJust to be clear, I ran all this by Karl first, who said, I favor having her here. (Very Karl.). Id been in touch with Sooki once or twice when there was talk of a bookstore in Santa Monica, and now I pinned my hopes on her as she dug into Toms schedule at Playtone, his production company. Sooki got her pilots license before she learned to drive, Karl told me. She would pour color into my inbox for a while and then be gone again. Germline mutations in ATM, BRCA1, BRCA2, CKDN2A, PALB2, PRSS1, STK11 and TP53 are associated with increased risk of pancreatic cancer. There is Tom Hanks's deceased assistant, Sooki Raphael, protagonist of the title essay that went viral a few months ago when it was published by Harper's, who had gone to Nashville for her . I made a documentary about my father. The three of us were standing, back of the theater in the dark. The ones who stayed turned out to be the ones I was interested in. At Harper's Magazine, author Ann Patchett relates working with Tom Hanks, through which she meets and befriends his assistant, Sooki. Its not like youre stuck in one place. I would have given her a hug but for the pandemic. Plant medicine, they called it now. She had once shown me a picture of herself standing in the surf wearing a bikini, a sarong tied around her narrow hips. Sooki left for yoga just as the waitress was bringing our eggs. The paintings were bold, confident, at ease. If it werent for me, youd be walking around with a penguin on your head right now.. is the author, most recently, of The Dutch House. How was that possible? So every time I am writing a novel, once I get about a third of the way into it and I really know what I'm doing and I love my characters, I start to think, well, what happens if I get hit by a car? I knew people in college and graduate school who took mushrooms, and then about thirty years passed before I heard anything about them again. That was how I saw the coronavirusas something that could kill Sooki. She liked herself again. She thought it would be fun for a while. UCLA had plans to start the same clinical trial that was up and running in Nashville, but not for another month or two, a unit of time that could not be lost to waiting. The next day she brought up the vacuum cleaner to vacuum off her yoga mat. And I'm always taken aback because it feels a little like asking a parent, who's your favorite child? I had liked her coat very much, those pink peonies as big as my hand. Shed only been here for a couple of hours. I tried to find a place for this new fact in the equation but all I could come up with was the obviousI didnt know her. We can go up and back the same day.. And so I just relied on a book to get me through. There arent a lot of boundaries. We had finally found a completely comfortable way of being together. It was such a short trip it hardly counted as being gone. apr. Sookis impending departure touched a memory I made a point of not revisiting: My sister and I flew from Tennessee to Los Angeles for one week every summer to see our father, and on the morning of the day we were going back to Tennessee I would start to cry. I was sorry for what Id done to him, by which I meant poisoning myself. She has children. In her tribute to Raphael, Wilson pointed to her friend as proof that it is never too late to explore your creative passions. Our newsletter vital information, hope, and healing, delivered weekly. To say that Patchett was impressed is an understatement. We said our goodbyes and Adrian and I walked downtown to see what had happened. Marti and I had hitchhiked through Europe together the summer we were nineteen. In time, all I would have to say was, Its Friday. Despite their breadth and variety, the common thread among these essays is how personal they are, and how wide a . Seventy percent of participants rated it among the most personally meaningful and spiritually significant experiences of their lives. He rolled his eyes, but he kept reading. She wrote home with vivid tales and photographs that demonstrated the color and beauty of her travels in the most unique ways. I feel like I could pop into Trader Joes and have them replaced with those happy little stickers they hand out to well-behaved childrenit undermines my confidence in the sophisticated nature of the whole process just a bit. KELLY: Wow. Many people loved it; some dared to hate it. To the best of my knowledge, she never quit. I wanted to say hello very quietly so as not to bother her. It turns out that the trial that they were running at the hospital where he worked was exactly the trial she needed. I was overcome by a sense of order in the world: if I hadnt picked up that book, if I hadnt gone to D.C., if we hadnt stayed in just enough contact for her to tell me a year after the fact that she had cancer, and if I hadnt mentioned it to Karl, she wouldnt have found her way to the only clinical trial in the country that both matched her cancer and could take her immediately. I came and watched from the open door. People were dancing, laughing, and so she went outside. Sparky Considers a Squirrel, Nashville 2020. And it was working for Hanks that led Raphael to Patchett who would later become an invaluable friend to Raphael during her cancer treatment and artistic journey. After a series of emails, Sooki comes to live with Ann and her husband . But you write that what you loved was finding someone who sees you as your best and most complete self and that she did that for you, and you think you did that for her. She shouldnt stay for us or leave for us. And who wouldnt be given the fact that Raphael didnt really emerge as an artist until her pancreatic cancer diagnosis in November 2018. We would all proceed with our lives except that now we would be together. Maybe its the trial, she said, but I think it could just as easily be the food and the yoga.. What with all the news of this new virus they thought there was a good chance people werent going to show up. The road forks and forks again. The spring was cold and wet and endlessly beautiful because of it. And then one night, for reasons I cannot imagine, we decided to do it all again before we went to sleep. I met an old friend from school who lived up in Harlem and she drove me out. When I rely on my faulty memory, the pieces are free to move. She told me that at home she had become impatient and angry. Tell us. We were in the middle of a pandemic. Vivaldi, Vivaldi, Vivaldithats how it starts. No, not Chekhov or Dickens or her one-time hero, Updike. My friend told us we should wear eye masks and cover ourselves with blankets. What about your sisters? I asked. I had been afraid of how the story would end. She was right here, Karl said. I hadnt meant this to be my career. There was no hesitation on the canvases, no timidity. I just cant stand the thought of being so disruptive to your and Karls (and Sparkys!) Karl, being Karl, took the officer around the corner to explain the situation. How it happened is told in the title story of These Precious Days, [] Figuring out Nashville was small potatoes for someone who had put together a Thanksgiving dinner for a film crew in Berlin. In a heartfelt tribute after she died, Wilson told followers about the lovely artist that was her dear friend and shared some of her vibrant paintings. I was taking in every precious day. He has me repeat my name, birth date and area of radiation each time before I enter the room. At any point in life. Entranced by her velvet coat and kind demeanor, Patchett knew she wanted to be friends with Raphael. How could there still be so many things I didnt understand when our time was nearly over? You all did a book event. He was in Nashville. Did Tom even know that Sooki and I were friends? Thats worth everything.. Their close friendship began through email, and would eventually lead to Patchett offering her home to Raphael in early 2020 so she could receive cancer treatment in Nashville. She had set up her life in the basement of our house, a place we never went. Get help here. She said she didnt know what she was going to do. Whether you loved it or hated it may depend on your feelings about celebrity culture since the benevolent presence of Hanks and his wife, Rita Wilson, hovers in the background. As the number spiked this week at 1700 U/L, I ran out of excuses, and my PET scan on Wednesday showed a return of the cancer to my liver. Even as Sookis white count continued to hover in the neighborhood of nonexistent, her CA 19-9 cancer marker number (that unreliable indicator we relied on) was dropping. You know that you dont talk about yourself, right? We were living together. Click here to dismiss this module permanently. Karls friend Dr.Bendell knew Sookis oncologist at UCLA and her oncologist at Stanford and her surgeon at Duke. Hell make sure you get everything you need. My friends who had tried it all had positive experiences, new books extolled the virtues of seeing the beauty and connectivity of all life, and there was a chance that this experience, coming so far out of left field, might be just the thing Sooki needed. He would bring a copilot to split up the hours. Of course we could. You okay? Sooki asked. I wrote again. Susan Joan "Sooki" Raphael of Topanga, CA passed peacefully on April 25th surrounded by friends, family, color, light, joy, and love. But remembering all the wonderful ways your loved one enriched your life and moving on from there can be such a powerful way to move forward. Its like youre going home to the Ukraine for the first time in ten years, I said as we loaded up coolers and bags. In fact we were so exactly in the middle of history that we had no way of understanding what we were seeing. Don't have an account? Everything filled in. Sooki wore a leash as a child, the energy in her tiny frame too much for her mother to control. How much is the Raphael worth? I didnt say, Your death. I felt like someone was slamming me against a wall, not in anger but as a job. The bookstore was closed to the public, but we were still shipping orders. An epilogue describes how before Sookis death they manage a day on the beach and a celebratory exhibition of her paintings. People are not characters, no matter how often we tell them they are; conversations are not dialogue; and the actions of our days dont add up to a plot. Still, Im able, for a while at least, to pick up the thread and walk it back. When undergoing treatment for cancer, looking inward for inspiration can be a very cathartic journey that helps with recovery. Most mornings, Sooki set out in the darkness to walk the two miles to a power-yoga class that started at six-thirty, despite the presence of my car keys on the kitchen counter and explicit instructions to drive. Except it was Sooki, and I liked her very much. Visit our website terms of use and permissions pages at www.npr.org for further information. Overview; Filmography; Filmography. About a quarter of the trees were down. She was supposed to lug this cooler with her to the hospital every week. Or I should say the boundaries you think are there tend to fall away. I was going to tell Karl what was happening but he was looking at his own phone. Its there for us at all times. They arent hard to come by around here; my office is made up of piles of books, mostly advance-reader copies that have been sent to me in hopes Ill write a quote for the jacket. "They have it," she said. Niki works at the bookstore. Good, I thought. Almost from the moment we finished that first practice, she identified it as part of her recovery, the thing she needed to stay alive. She didnt know. Or maybe it wasnt as bad as that. I really could call once, and I wanted to call her after dinner. But her time as Hanks assistant brought her to a woman who would later become an invaluable friend during her cancer treatment and artistic journey. I would be gone for the night, and once I got back my friend Emma Straub was coming to visit. We filled up the bird feeders twice a day, scrubbed out the birdbath every morning, tracked the relationship of a couple of lizards who lived in the planter on the deck. They were lucky and the fire skated past. When does the story start and when does it end? Doug Wendt also lost a loved one to cancer. Twenty-two sessions down and six to go. That shed always been so careful not to cross any lines, not to advance herself through connections shed made through him. I chart your emotional life.. She once caught bats for the City of New York. Everything looks so logical going backwardYes, of course, thats what we didbut going forward its something else entirely. All the messages were about Tom and Rita. Look at this.. Of course I want to go. He's really interesting. We were about to go on. Tom Hanks was so completely absent from our conversations that I once asked her if he knew where she was. I would tell you we were idiots, but thats true only in retrospect. For a while she filled in for a friend and was the assistant to a film director, and then another friend introduced her to Tom, who was looking for someone. Having lost his mom to breast cancer in 2018, he knew he wanted to be extra careful during the pandemic. This is whats been missing.. All resources were now directed at a disease that was not the disease Sooki had. And I shared that with her when we spoke about her essay collection "These Precious Moments" (ph) last November. I miss our emails. She sent updateschapter eight now, chapter twelve. Sookis mother lived two miles from the Westchester airport. Sooki got a stool and a towel and went to sit on the back deck. My friend Patrick, who lives in a tiny apartment in New York, spends a couple of weeks with us every year, writing in our basement, which, for the record, is nothing like a basement. I told them that when I was a child, my sister and I would come to the Ryman on Friday and Saturday nights with the man who was then the house doctor at the Opry. Locked out of your account? In a previous interview with SurvivorNet, Cuozzo tells us how she found comfort expressing herself through her work. And who wouldnt be so blown away given the fact that Raphael didnt really emerge as an artist until her pancreatic cancer diagnosis in November 2018. So all the other girls went home. But before her passing, she had a long career in the film industry which included her time spent as Hanks assistant before indulging her passion for painting. Remember in the future not to make assumptions. Shed fallen down some stairs outside of church the night before and twisted her foot and now that foot was swollen and sore. Entire countries have lost their distinctive smell, The Wests industrial-sized chicken farms could be as dangerous as any wet market. Email tilts toward the overly familiar. KELLY: And the timing of this - she comes to live with you while she's doing the treatment, and this turns out to be the beginning of the pandemic. Catalpa flowers littered the sidewalk, though I hadnt realized the catalpa trees were in bloom. 2023 USA TODAY, a division of Gannett Satellite Information Network, LLC. Karl said she should send him her records if she wanted to, and that he would talk to Johanna Bendell, an oncologist at the hospital where he works. And if you decide you want to stay, well, you dont have to give that up either., Sooki the Tireless, Sooki the Indefatigable, looked as if she was about to split apart. I had told her the make of my car, and she waved when I pulled up in front of the airport. I have limited time as I work til mid May, then leave the US in June until I come back to start another movie in September. Then Covid strikes; 2020 is all but canceled and its impossible for Sooki to go home. 2,560 Followers, 85 Following, 25 Posts - See Instagram photos and videos from Sooki Raphael (@sookiraphaelartist) It would have to be for this story to continue. It was so hard for her to talk. 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