Prompt 186. Freedom & a new 100-Day Project
and a prompt on untangling an obsession by Elizabeth Benedict
Hi friend,
I’m excited to say that after five weeks of confinement in a hospital room, I’ve left my fluorescent chamber.
This was the most challenging, at times the most harrowing stay I’ve ever had, especially three weeks after transplant, when I developed mucositis, two blood infections and a side effect of chemo called cystitis that left me in the worst pain of my life. I thought I would feel a sense of claustrophobia or suffocation, stuck in the hospital as I was, but for most of it, I didn’t have the urge to leave at all. I felt safe, secure knowing that a whole team of medical professionals was watching over me.
The morning I was discharged, I was excited but also daunted by the prospect of not having round-the-clock care. I also felt a measure of sadness, because so many of these hospital workers became my friends—like Christina, a nurse who spent her break in my room playing my favorite game of Scrab-Grab (aka lightning-quick Scrabble), and Chandra, who came each day to clean my room and shared stories of her life.
When I was finally discharged from the hospital a few days ago, these friends sent me off in the most wonderful way. As I was wheeled from my room, my mom, dad, and Jon beside me, we turned the corner to find the whole hallway lined with dozens of nurses and doctors and staff, cheering and clapping—something they reserve for patients who’ve had a really rough go. Across the end of the hall, they’d strung a green ribbon, like a finish line. They had me cut it with a pair of fancy gold scissors, then they draped the ribbon around my neck and cheered until I made it to the elevator. It was such a loving, supportive gesture that I wept all the way home.
I’m currently on Day +30 post-transplant, and this next phase will not be easy. While I’m thrilled to get to sleep in a real bed and to have home-cooked meals, the truth is, I’m in rough shape—I’m very weak, in need of a wheelchair or walker to get around. Each day for the foreseeable future, I’ll go to the hospital for outpatient treatment, and I’m anxiously counting down the days until my first post-transplant biopsy. To get me through, I’ve decided to do a new 100-day project.
When I’ve done 100-day projects in the past, they’ve been so powerful—both the sense of creative possibility and the organizing principle it affords: your day becomes centered around one small creative act. What I also love about this project is doing it in community, drawing inspiration and a sense of accountability from loved ones.
I’m going to begin on April 1—which also happens to be the two-year anniversary of the Isolation Journals. I’ve asked some of my family and friends to join me in starting their own 100-day projects, and now I’m inviting you.
Next week I’ll be sending more information about next steps and what the project will look like. (Don’t worry—I don’t have the energy to send you an email every day for 100 days. It’ll be more of a self-directed kind of thing, with period pep talks and guiding thoughts from me.) In the meantime, I’m dreaming about what my project will be. I haven’t been well enough to write, so I’m toying with the idea of making daily voice notes, as a kind of audio diary. My other idea is to continue painting—perhaps not a whole painting a day, but thirty minutes of watercolors in bed each afternoon. The project needs to be challenging and nourishing, but most importantly it has to feel doable and sustainable in order to make it to Day 100. Perhaps you’ll spend this next week dreaming up yours?
And now, onto today’s prompt—from my friend and the bestselling author Elizabeth Benedict. I met Elizabeth years ago, when I contributed an essay called “Hair, Interrupted” to her anthology Me, My Hair and I: 27 Women Untangle an Obsession. Hair happens to be the subject of her gorgeous prompt, but as I’m sure you’ll see, it’s about so much more.
Sending love,
Suleika
P. S. On Thursday, I sent out Dear Susu #3: “Love in the Time of Cancer”—featuring my dear maman, Anne Francey. We talked about mothering: selfishness, surrender, and wisdom gained from experience. I’m so proud of it and so awed by her. It’s not to be missed—you can read it here.
P.P.S. I was so sick when the paperback of Between Two Kingdoms came out last week that I wasn’t able to do any press or book events or even post about it on social. But Carmen asked for your support, and thanks to everyone who has read and shared this book, it debuted at #7 on the New York Times bestseller list. I’m truly humbled by this incredible community. I can’t thank you enough.
The Isolation Journals is my newsletter for people seeking to transform life's interruptions into creative grist. Both free and paid subscriptions are available. The best way to support my work is with a paid subscription, where you get added benefits like access to my advice column Dear Susu, an archive of interviews with amazing artists, behind-the-scenes tidbits from me, our virtual writing hour the Hatch, and other opportunities for creative community.
186. Untangling My Lost Hair by Elizabeth Benedict
Shortly before I was to start chemotherapy in 2017, my sister, who has long, beautiful, carefully coiffed hair, phoned and asked eagerly, "Do you want me to shave my head in solidarity?" I was stunned by her offer and said "no" immediately. I’d said nothing about shaving my head—I had no interest in it. The idea came entirely from her.
As I faced losing my hair, I wanted to slink away and hide. I wanted no grand gestures, no drama, no consults with hairdressers. Their advice would’ve been like rearranging the deck chairs on the Titanic; nothing would make me less bald. I bought a wig and a few little hats, which I called “cancer hats,” though I could barely say the c-word even to myself. When I mentioned losing my hair to my grown stepdaughter, whose gorgeous hair falls to the middle of her back, she said, “I think bald heads are cool.” I did not agree.
Yet when my hair came out in strands and then in clumps, I didn’t mourn. I was more worried about the future and whether I’d be around for it. One day, I grabbed my locks, took scissors, and snipped just below my ears. The rest didn’t completely fall out, just thinned to mere wisps. I wore a hat whenever I went out—so easy in wintertime. When my hair grew back in the spring, my neighbors noticed. “Wow! New haircut!” It took a few seconds for me to summon a response: “I just wanted something different.”
Coming up against our mortality is like dangling at the edge of a cliff. Will you fall, or will you find your way to safety? It’s a bracing experience, a trauma, and keeping my illness to myself felt like a suit of armor. When my sister offered to make the public gesture of shaving her head, it bumped up against my instinct to hide.
It took months to see through clouds of fear and to understand her offer for what it was: evidence of love. She was willing to cut off her treasured hair if it would help when I lost mine. Years later, with my hair and my health back, I can see more clearly and accept more graciously. I had gone through such contortions to hide my illness that I could not recognize the bright light of love when it shined on me.
Your prompt for the week:
Hair is elemental. It can define us, confine us, refine us, and when we're faced with losing it, through age or illness, it can undo us.
Write about your relationship to your hair: how it shapes your own self-image. How others see you. Or how, when you lost your hair or changed it, you learned something—about yourself or someone else.
If you’d like, you can post your response in the comments below, in our Facebook group, or on Instagram by tagging @theisolationjournals.
Today’s Contributor
Elizabeth Benedict is the author of five novels, including the bestseller Almost, and editor of three anthologies, including Me, My Hair and I: 27 Women Untangle an Obsession, where you can find Suleika's essay, "Hair, Interrupted." Look for Benedict's forthcoming memoir, Nora, the Susans & Me: Silence, Fear & Feminism. To learn more, visit elizabethbenedict.com.
For more paid subscriber benefits, see—
Dear Susu #3: Love in the Time of Cancer (Part 1), on mothering, selfishness & surrender
Suleika’s Studio Visit, Hospital Edition: Survival as a Creative Act
A half-hour reprieve: Guided Breathwork with Taylor Somerville
I am a registered nurse and can only say how much I love and value the many treasured relationships with patients that have nourished my life. One of them was a man who had endured two very significant losses and then developed a cancer that eroded his entire mid-face until it became an open, gaping cavern. He isolated himself in his room out of regard for others and not wanting to frighten others with his appearance. I was only 21 when I started caring for him and I was afraid I wouldn't do right by him, so I summoned compassion and my warm sense of humor and brought him as much love as I could. We had many bright and very real conversations. Just prior to his death, he told me he had fallen in love with me. At the time I didn't know what to do with that very dear expression, but as I grew older and thought of him I felt so deeply honored. I loved him too. If there is a place where our spirits go when they leave our bodies, I hope to meet him again and tell him how much his love meant to me. Wellness is a concept that, in my way of understanding, means that a person finds the way to be their best self within the context of their experiences, happiness or suffering. In the context of your disease, one might consider you to be quite well. I loved reading your book and am grateful for all you've shared. I love this blog and therefore I love you for being real, thoughtful, and well enough to help all of us be well too. I am a young-in-spirit retired nurse at age 69 and my hair has changed from being long, straight and blonde, to thin, wiry, and silver. I miss being able to wash it and go because now it takes a bit of work to style it, even with a simple style. If I wear a beanie in the winter, it is a frightful, electrified mess when I remove it. I wear a hat when I'm out hiking on our beautiful trails here in Colorado, but have a very funny looking case of hat head when I remove it. If I ever lost my hair - and being an older woman puts me at risk for developing a cancer as I age- I would be most embarrassed to show my head because I have a permanent bump on it from where my head hit the windshield in a car accident. I'll have to name it and draw a smiley face or some other object on it to signify how glad I am that I survived that accident. My first husband died at the scene. Like you, when I recovered (mostly) from my injuries, emotional and physical, I left the U.S. for Nepal for an extended trek while my friends climbed Mt. Everest. I did this so-called crazy thing because I needed so much to be in a new, very beautiful place, away from all the well-meaning folks who wanted me to be "me" again and seemed to always be peering into my soul to see if I was really healed and not fooling them when I said I was. I enjoyed that no one knew I was a nurse, a young widow, and just wanted to stop containing my spirit in the box where being a survivor seemed to put me. May you be well, be safe, be loved. I congratulate you for being a good example of what it is like to find wellness within your struggle.
Loss of hair…probably the most if only visible sign of fighting the big C. During my experience I continued to run my business, play soccer when I could and not miss too many beats. My friend hired me to come to her company once a week for a big project. I wore my wig, met with executives and delivered! When my hair got to the point that I didn’t have to wear that hot thing in a Texas summer any longer, I went to the office sporting my short do. As I entered the employee break room to grab a coffee, from across the crowded room, the VP of risk management yells out “whoa it takes a strong confident woman to cut her hair that short. I love it.” Only my friend knew about my C diagnosis. She was giving him the cut it gesture but he continued on. I just busted out laughing…because I fooled them all. Cancer had me but in that moment I didn’t have cancer. I was just a girl with a daring hair cut and it’s one of my favorite c stories.