Don’t Act the End by Jen Campisano

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Before my mastectomy, I had to get an EKG to test my heart, to make sure it would be strong enough for surgery. As I waited in the hospital lobby, I flipped through a Good Housekeeping magazine from last summer, with Michael J. Fox [who suffers from Parkinson’s disease] on the cover; the feature article was about the actor turning 50. In his interview he said  that there’s a motto in acting that he applies to his life: “Don’t act the end.”

I find myself thinking of that motto a lot lately, as I try to find my new normal. The pain of surgery is gone now, and at six weeks post-op, I’ve resumed most daily activities. What I’m struggling with now is getting beyond mere survival, getting to a point where I’m not constantly looking over my shoulder for the boogeyman, getting back to life.

There’s the fear that still rears its ugly head — less often now, but still ugly. A friend recently asked me how I live with fear without letting it get in the way of all the good moments. I admitted some nights I find myself crying just giving Quinn a bath, watching him splash and giggle and play with his plastic bath toys. Our lives are so fragile. And then I try to push that fear aside. I let it allow me to appreciate each moment with him even more than I might have before the cancer.

In the Good Housekeeping article, Michael J. Fox explained his motto this way: “If you know a bus is closing in on you as you stand in the middle of the road, there’s still a lot of space to fill between where you are and the moment that bus hits you. In other words, don’t act like you’ve been hit by the bus until it happens.”

My hair is returning slowly. Life goes on, and yet, the axle around which my life spins has been knocked off-kilter.  I’m trying to find my new center of gravity, and it’s a strange, unbalanced space to occupy. I no longer feel like that bus is closing in on me. And although there are no guarantees in this life, between now and when that bus does someday hit, I have a lot of enjoying my days to get to.

Update: Jen has survived cancer and her new story centers on helping cancer patients as a patient advocate and caring for her two little ones! I love how she has reframed her story.

You Can. You Can.

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Recently I spoke to a group of organ transplant patients via Zoom. I was quite moved by their stories and coached them to share and write them. Afterwards, Taia, quiet during our Zoom, wrote to me privately. “I wanted you to know my story. I had my first transplant at age 18. Now at age twenty-six I need another kidney. It is devastating. I don’t know if I can do this again. Do you understand?”

In truth, I was not sure I could understand. At that moment I was consumed by my husband’s situation. Steve had a hernia operation on September 10. Routine. Since he was healthy and fit, we believed he would bounce right back, but twelve days later he could hardly eat or walk. During COVID we had been hesitant to go to ER, but after his physician called with results of a blood test, we knew we were possibly in a fight for his life. We went.

In ER Steve was poked and prodded and almost immediately an IV and a catheter were inserted into his swollen body. Chuck, who ran the imaging machine, joked with the attending physician, Dr. Chuck, about which “Chuck” was more important in the hospital. We batted jokes around until Dr. Chuck, who kept wiping his hands on his white medical coat, looked at the scans and squinted his eyes in the dim light before announcing, “This is kidney failure.” Like a wind tunnel these words sucked the levity out of the room. After a long pause, the doctor added, “We can reverse it, and we are going to do all we can to make that happen.” He wiped his hands down the sides of his white coat again. “You may need dialysis and possibly dialysis for life, but I think you can make it.”

“Yes,” I nodded. “You can overcome this. You can.” My words seemed to reverberate through the room. I steeled myself inside. I knew this man. I had lived with him for four decades. He was strong and even now with his body completely compromised, he joked that he was relieved that we now had a problem to solve.

As the chaplain escorted me to ICU, I repeated my new mantra to myself over and over. “You can. You can!” I used to scrawl those words all over essays when students were struggling to find their voice. Nike says, Just do it. I say, “You can.” In my heart I added, “Steve. Believe. You can.”

That night in ICU was a blur of doctor visits, blood draws, IV bags, and beeps and buzzers.  At one point I reached down in my book bag and pulled out my journal. I wanted to write, but I was weary. Instead I reread what I had written that day.

My writers had been toying with a prompt I assigned, “What possibilities do you need to create?” Disappointed by our canceled beach trip last summer, I had scrawled a sketch and written about the possibility of an upcoming trip. I visualized half-built sandcastles, hotdogs dripping in mustard, kites whipping through the breeze. A beach. I saw us walking on the sand and the image lulled me to sleep. A buzzer jolted me awake, and a flurry of people in the room were switching out IV bags and talking hurriedly in hushed tones. “His sodium is going up too fast,” a doctor explained. I prayed and mumbled my mantra, but I was too exhausted to stir.

By 7 am his numbers were headed in the right direction. There was no dialysis that day. In fact, there was no dialysis at all. Once Steve’s fluids could leave his body, his kidneys kicked in and began working on their own. No infection. Recovery would take time, but he could do this.

A couple of days after ICU I faced an avalanche of ignored emails. When I saw Taia’s, I reread it carefully.  She wrote, “I had my first transplant at age 18. Now at age twenty-six I need another kidney. It is devastating. I don’t know if I can do this again. Do you understand?”

I wrote a long email back and at the end, I answered her. “I think I understand. It is hard, but I believe in you. You can do this.” I skipped a couple of lines and at the bottom I scrawled the words just as I used to do on student papers, “You can. You can.”

A Bookcation!

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Madeleine L ’Engle said, “You have to write the book that wants to be written. And if the book will be too difficult for grown-ups, then you write it for children.” She is right. Books for children carry untold nuggets of wisdom. Certainly, my third-grade teacher knew this. Mrs. Vawter read to us every day after lunch. Her gift: she impersonated book characters. She was George Washington shouting orders to the troops when we read his biography. She was Jody Baxter with a backwoods accent when she read The Yearling, a heartbreaking tale of a boy shooting his own pet. In that classroom I often hid behind the book bins after school to read. It is there I learned to love books.

Bump forward a few decades. There is a pandemic. Initially my granddaughter Macy and I loved the novelty of staying home and doing lessons together in a Zoom room, but when we had to cancel a beach trip and the dog days of summer slapped us with three-digit heat, Macy’s enthusiasm waned. Her sapphire eyes lacked their shine. Her voice lingered sadly on words and lacked her trademark joy. Together we decided to go on our own journey. Through books. As Dr. Seuss said, “Oh the places you’ll go!” Even amid a pandemic.

And so began our reading trek down to Mexico where at age twelve Esperanza (Esperanza Rising) lived a fairy-tale existence on a sprawling ranch. As her family’s laborers harvested the grapes for market, Esperanza and her family prepared for the annual fiesta and her thirteenth birthday. But there would be no celebration. A sudden tragedy shatters her perfect world, and Mama and Esperanza are forced to flee to a migrant work camp in California where the Great Depression complicates their lives. Mama falls ill, and Esperanza undertakes hard labor to keep them fed.

Next our reading journey led us from the Great Depression to the deserts of Sudan where we trekked with the teenage Salva (The Long Walk) across his war-torn country in search of the family he had lost. From the rebellion in Sudan, we journeyed to Saigon (Inside Out and Back Again). A young poet Ha wrote poems to share the beauty of her life with friends and her beloved papaya tree before the Vietnam War drove Ha and her family to flee aboard a crowded ship headed toward hope. Headed to America—a country that baffled Ha with its strange food and confusing, mixed messages for immigrants. We read more poems that captured the anguish of a similar prejudice. Poet Jacueline Woodson taught us what it was like to be a brown girl struggling to find her place as she grew up in the South (Brown Girl Dreaming). Along with the stray dog she adopted, Opal (Because of Winn Dixie) taught us how to befriend those in need and how to thread together a truly disconnected little town. “Opal is a hero,” Macy explained to me.

By early August we had read ten books. We celebrated with cake. These books wrapped our brains around endless lessons. We had learned that war is all too common on our planet. That events like a depression or a pandemic have been recurring throughout our history. We learned that all of us must go on our own hero journey—and that there will be losses, pain, and growth.

One of the most memorable moments came from a silverback gorilla, Ivan (The One and Only Ivan). Witty Ivan made us laugh at the follies of humans. Using all his resources, Ivan saved a baby elephant from being whipped into submission in a show and hatched a plan to get her safely to a zoo. Ivan was brave, kind, patient, funny—and we grew to love him. One afternoon as we read, cheering for his success, I saw Macy eyes shining brightly on the Zoom screen and then I heard it–Macy’s hiccup laced laughter had returned.

Long after the pandemic, long after Macy is grown, I will still revel in this experience—and how it brought back the wisdom and joy that can come of reading.