Tis the Season

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“Nothing can dim the light that shines from within.” Maya Angelou

“Should we pull the holiday boxes from the attic?” my husband calls from the garage. It is the season, and I love the lights, my fake Christmas tree, and all of the Santa ornaments that I hang on it. Most of all I love hiding the special Santas throughout the house for my grandchildren to find. Harper and Macy count on this tradition. Usually that is reason enough to haul down the boxes.

“COVID is not stealing Christmas,” I call back to my husband. But I choke from the dust as the boxes begin to clutter the kitchen. As I wipe them down, I think of other traditions I love most. Baking coffee cake from mom’s recipe. Buying each child a special ornament. But the lights, and hanging way too many of them, is my favorite tradition. Last year I discovered crystal, twinkling star lights—energy efficient. I hung them everywhere. Inside and outside. At this darkest time of year, we need light. Especially now.

I recall the Lady with the Lamp. In third grade as I waited for the school bus, I hid in the back of the classroom reading the little orange biography books. Here I discovered Florence Nightingale. During her life she was revered not only for her nursing work that saved soldiers from death during the Crimean War, but also for her medical insights. She wrote, “It is the unqualified result of all my experience with the sick, that second only to their need of fresh air is their need of light.”  What I remember most about her: she was kind–taking patients flowers and making sure they were rolled out into the sunshine whenever possible.

After Nightingale and before antibiotics, many physicians and sanatoriums practiced light therapy for healing. Thinking back, the early Egyptians worshiped Ra, the Sun God, and the father of medicine, Hippocrates, advocated an idea that we seem to be embracing yet again—the healing power of sunlight.  Even the winter blues has a name, SAD, or seasonal affective disorder, that can be treated with light boxes or even better–sunshine. Current medical data shows light energy has profound healing properties for us.

As I hang the lights on the tree, I think of Susan. While I am alone during COVID, I have new and wonderful friends in my Zoom classes. Susan Lugo who has stage three ovarian cancer has been an integral part of our Healing Journeys book club. While her cancer outlook is not good, her personal outlook shines through like the northern star. I feel she will make it. As we discussed our stories last week, she gifted our class a poem. It says,

I am not cancer.

I am life and light and energy and beauty and love

And giving and joy and delight and gratitude.

The memory of these words catches in my throat. The beauty of them. The truth of how we can align ourselves with light and energy and beauty and love–even when we face a life-threatening illness. Even when the holidays look bleak. Even when it will be only small gatherings until we loosen the grip of this pandemic.

Like Susan, I will choose light and energy and beauty and love in this season. I will wish this for all the people. Especially those I care about. For you.

To celebrate this thought, I stop decorating and place an online order for additional strands of crystal, twinkling star lights—energy efficient. There will be light.

Note: Here is a link to Susan Lugo’s beautiful poem.

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.”