Prompt 199. Things to Look Forward to
& a prompt on beauty, wonder, and delight by Sophie Blackall
I recently reached Day 100 post-transplant. It’s a pivotal milestone, as transplant patients face the greatest risk of fatal complications in the first 100 days. At Day 100, you also undergo a whole battery of tests, including a bone marrow biopsy, which reveals how successful the transplant has been. Late last week, I went with Jon and my mom to get the biopsy results, and when my transplant doctor came in, he didn’t waste any time. “Your bone marrow looks beautiful,” Dr. G said. “No sign of leukemia, and it’s 100% donor cells.”
It was good news and should have felt like a celebratory moment, but it was quickly eclipsed by what came next. Given that this is my second transplant, and given the nature of my disease and the chromosomal abnormalities that put me at a high risk of another relapse, these good biopsy results are only the beginning. To prevent the leukemia from returning, I’m entering a new phase of treatment, and Dr. G laid out the plan: a monthly protocol of two chemo drugs, one via infusion and the other in pill form, as well as donor lymphocyte infusions (courtesy of my brother) every three months. It’s a regimen I’ll be on indefinitely.
Anyone who knows me knows that I do not like to cry in public. But suddenly, I could feel some part of me crumbling, and I couldn’t stop the tears from falling.
“What’s upsetting you the most?” Dr. G asked.
“The word ‘indefinite,’” I replied.
As long as there is an end point, as long as you can see the horizon, be it literal or figurative, almost anything feels survivable. But the notion of doing chemo forever felt so sprawling, so undefined, so endless—I didn’t even know where to begin. Since childhood, my orientation has always been one of optimism, of hopefulness. I’ve always felt that, whatever the circumstances, it’s possible to make the most of them. This became my most important survival skill during treatment a decade ago: to rally through difficulty, to muscle my way through pain or discomfort, to take the hardest thing and make something useful, even beautiful out of it.
But that day, and over the last week, I lost sight of that orientation. It hit me that my life will never not be organized around cancer treatment and side effects and significant limitations—that I will never not be sick. What this means for the future—for my life and the lives of my loved ones—I just couldn't stand up under the weight of that. Couldn’t rally, couldn’t muscle through. Couldn’t see a way of taking this and turning it into anything useful, and certainly not beautiful.
Here, on the eve of my next round of chemo, I can’t say that weight has entirely lifted, but I trust that I will learn to hold it. I’m beginning to see the shape of the challenge before me, which is so different than before. I keep thinking of something Dr. G said toward the end of my appointment: “The goal is not just to survive, but to live.”
How to do this? It’ll take time to figure out. Today I’ll start by sitting on my terrace, which is growing exponentially in potted plants, including the loveliest urns from my friend Sharon, overflowing with delphinium, purple verbena, white irises, and fountain grass. I’m going to read a French true crime memoir called The Adversary (my mind has been so foggy as of late that it takes some heavy duty narrative suspense to keep my attention). And I’m going to focus on today, saving whatever simple pleasures I can conjure.
A few weeks ago, my dear friend Hollye sent me a beautiful book called Things to Look Forward to by Sophie Blackall. Based on a philosophy Sophie cultivated during a period of grief—when, as she says, she began to lose sight “of beauty and wonder and delight”—it’s a list of 52 small joys, gorgeously illustrated and described.
Her approach feels necessary and vital, and I mean this broadly. (Like I said last week, the world is a lot right now.) Today, with Sophie’s permission, we’re sharing a few things from that list and a prompt inspired by it. May her words and her simple but radical philosophy bolster you. May it fill your days with things to look forward to.
P.S. I’m writing about this moment and the challenges I’m facing with the hope that it might help others navigating similar difficulties, not for pity or advice. I’m so fortunate to have an incredible support system helping me through this. Lots of people don’t, and if you know someone in that situation, I’d encourage you to reach out to them, maybe even send them a copy of Sophie’s book.
P.P.S. Today we’re gathering at the Hatch, our virtual creative hour for paid subscribers, from 1-2pm ET. Our newest Isolation Journals team member, the writer Holly Huitt, will be sharing a passage from Hold Still by the photographer Sally Mann and some thoughts on being anchored to a place. Join us here!
P.P.P.S. Last week I sent out a Day 70 check-in—on things to inspire us for the homestretch. The discussion is shaping up to be an amazing list of things to watch, read, listen to, immerse yourself in. Find it here!
An Update on Fran
Foster pup Fran has been adopted! Thanks to everyone who expressed interest and helped spread the word. If you’re interested in fostering or adopting, please check out the Barking Meter and Sgt Pepper’s Friends.
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Prompt 199. Hot Showers, 11:11, and Drawing on Eggs by Sophie Blackall
Excerpted from Things to Look Forward to: 52 Large and Small Joys for Today and Everyday
No. 2. A Hot Shower
I never take a hot shower for granted and never underestimate its power to make me feel better. Coming from drought country, I mostly try to keep my showers short. But now and then I let the hot water run.
No. 9. 11:11
When my kids were little, we would touch fingertips like E.T. and Elliott and make a buzzing sound when we connected. I would reach a hand to the back seat when I was driving, and the kids would bzz my fingertip in return, not looking up from their books. I would bzz them if I was stuck on the phone too long or if I was trying to be discreet at school drop-off. It was a way to silently communicate: I love you. Don’t forget to eat your fruit. I wish I could protect you from all the heartache and injustice in the world—bzz bzz. We haven’t entirely retired the finger buzz, but it was mostly replaced around fifth grade with marking 11:11. Initially, it was about noticing the time and making a wish; all the kids were doing it. In middle school, when my children got cell phones, one or the other would send a family group text at 11:11 a.m. I was torn between thinking they shouldn’t have their phones out and being chuffed to get the message. Now they are out of college and making their way in the world, but we three still text each other at 11:11 if we happen to catch it, sometimes twice a day. You can’t watch for it—that would be wrong—but it’s a moment to look forward to, a moment of connection. A virtual finger buzz.
No. 11. Drawing on Eggs
If you have an egg in your house, you can draw a face on it. No one will stop you. Then you will look forward to opening the fridge.
“Hello, Egg!” you’ll say.
You will amuse yourself no end. Trust me.
Your prompt for the week:
Make a list of things to look forward to. Include big things if you’d like, but also the small everyday things that buoy your spirits, make you laugh, make you feel alive.
Bonus prompt: If you want, try your hand at illustrating them!
If you’d like, you can post your response in the comments below, in our Facebook group, or on Instagram by tagging @theisolationjournals.
Sophie Blackall is an award-winning illustrator of over 50 books for children, including the New York Times best-selling Ivy and Bean series, the 2016 Caldecott Medal winner, Finding Winnie, and the 2019 Caldecott Medal winner, Hello Lighthouse, which she also wrote. She is the four-time recipient of The New York Times Best Illustrated Picture Book Award and has worked with UNICEF and Save the Children, UK on global health and literacy initiatives. Originally from Australia, she now splits her time between Brooklyn, New York, and the Catskill Mountains, where she is building a retreat for the children’s book community called Milkwood Farm. You can find Things to Look Forward to here.
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Inspiration Immersion, a Day 70 reflection and community crowdsourcing of things that inspire us
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Hello Suleika - I just wanted to reach out in solidarity. Similar to you, I have relapsed AML after a transplant and am currently in hospital, having more chemo and battling an infection. I feel and know the uncertainty, the realisation that the shape of my life does not look how I imagined it might. The plan for my treatment is unfolding, but no-one is sure exactly what happens next. It’s hard to manage at times. Sending you so much love and strength from London - Claire x
P.S. the list has inspired me to get out of my hospital bed and have a hot shower x
I’m a paraplegic. I have been for 38 years. Sometimes my limits and losses hit me like a hammer; I’ll never wiggle my toes in beach sand; I’ll never climb the Roman Steps or the Eiffel Tower; I’ll never dance again.
Although I deploy “Compare and despair” and work to count my blessings, I can still be smacked with a moment of grief and jealousy when I see a photo of someone doing something physical that I would love to do. Whoops, did I write “a moment?” Make that “An utter meltdown of mammoth proportions.” I snap at people I love and then I feel terribly guilty.
Nature saves me. The silliness of the grosbeak twirling on the suet feeder;, the clear, stained-glass yellow of big-leaf maples against a brilliant blue sky; the bizarreness of finding a purple or navy-blue mushroom growing near our home — and Pontificating saves me — I write, I lecture, I interrupt people and say, “Actually, . . . “ (Thank God it is impolite to clock a paraplegic. There’s times I deserve it).
Grief and gratitude are the swirling yin-yang of my life. I live each day on a knife’s edge. Will I get adequate sleep? Will my body ooze/bruise/betray me if I try an excursion? Yes’s and No’s pop up with great unpredictability. It’s exhausting to experience and exhausting to explain.
Then the phone chimes and my neighbor says she’s free for a bit. I strap on my leg braces and clunky orthopedic shoes and heave myself upright on awkward forearm crutches. We’re about to spend the next half hour peering under the bushes that line our short, rural road. We’re documenting the fungi in our neighborhood.
We’re up to about 200 species so far. It’s important to look frequently because many species will produce fruiting bodies that are out for just a day or two. The mushrooms are bizarre, adorable and incredibly interesting. Beauty, wonder and delight right there on the forest floor, feet from my front door. My life’s journey sucks — until it doesn’t.