Finding a Bit of Beauty

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Seven years ago I sat on the edge of a black velvet chair in a chalk-white, sterile office. My heart clenched as I waited for a doctor I did not want to meet. When the door swung open, a chalk-white radiologist entered and motioned me to sit back. Suddenly I felt trapped in a black and white 16 mm movie of my life, a scary, surreal film–the kind of strange avant-garde ones that Andy Warhol used to make in the ‘60’s. There was no sound but the ghostly white doctor mouthing the words, “You have cancer.”

For one year I struggled. Profoundly aware of my new state. I recall curling up like a child on the cold tile of my kitchen floor and crying. Then traipsing from one doctor’s office to another to see x-rays of my troubled left breast blown up on screens and studied meticulously. Then I faced biopsy after biopsy. These were followed by a failed surgery that allowed me to finally intuit what my care team had known all along. I needed to lose my breasts, and I finally yielded to a double mastectomy. Throughout the journey I wrote copious notes in my bright red “I have cancer” journal. The writing gave me the gift of understanding. A new awareness.

This began my journey of teaching not only cancer patients but veterans and writers in all possible community settings. The rewards of watching these individuals unfold with new stories and new ways of coping were huge. I still thrive and grow from the notes and hugs I receive from my students.

But caught in the dance of awareness, I know that 115 women—and men–die from this terrible disease each and every day. Sometimes I know them personally– and it is like getting endlessly gut-punched. Over and over.

For four years I went to chemo with my cancer buddy, Jen Campisano. She learned she had stage four cancer at age 32. I love sharing excerpts from her blog, Booby and the Beast, with my students. Jen is a breast cancer survivor–an inspiring one. At the same time, I am crushed when I read one of her blogs that shares the losses of her all-too-young friends. Like Adrienne:

Adrienne breast cancer survivor sandra marinella

“A few months ago, my friend Adrienne was told she had no evidence of disease. She took her little boy to Disney World. But this Saturday morning, she died of metastatic breast cancer that caused her liver to fail. Poof — gone, just like that. Another little boy to grow up without a mom. A dad left to explain how she would have stayed if she could have. Another young woman dead long before she should be. . . And now I am angry, and I am terrified.”

Sometimes these stories rip my heart open. I know we need to do more. I know I need to do more. These experiences make me determined to give what I can-–teaching the power of narrative medicine, giving books or workshops to cancer patients, or by donating my book profits to cancer research. This is why I do what I do.

Please help me. Let’s be aware. Let’s do what we can to help. One of the most powerful insights that I have learned from Adrienne and Jen is that life is short, and we must heighten our awareness, live in the now, and be grateful. Lisa Bonchek Adams said this wonderfully when she was facing the end of her life:

 

“Find a bit of beauty in the world. Share it. If you can’t find it, create it.

Some days this may be hard to do.

Persevere.”

Katie’s Story

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Katie's Story, Sandra MarinellaKatie held up her portfolio of drawings, pleased that I had asked to see them.  I had been invited to an evening of “Stories of Ourselves.” I wanted to learn how those with language disabilities shared their stories. Katie, born with cerebral palsy, became my joy-filled teacher.

She tapped out her message for me.  “This drawing comes from my imagination,” said a strong male voice, generated by Katie’s Window tablet that serves as her speech generating device. I wondered why her machine cannot carry her voice and then I realized she has probably never had a voice. Still, I was disappointed.

Katie has used twistable crayons to create a book of colorful drawings and many of them hold secrets to her story. Who she is.

“Robots!” I exclaimed, attempting to guess the subject matter on the cover on Katie’s portfolio. She nodded with delight. This evening my job was to help those with limited language ability to share their stories. As we flipped through her portfolio, I was taken by the vibrant colors and meticulous detail Katie had etched on each page. I oohed and awed as I turned the pages.

In the end we returned to the drawing of robots, and I sensed this work was especially important to her.  Katie was born with cerebral palsy and suffers from hemiparesis which has left her walking lopsided most of her life—but walking. She hears out of one ear and often communicates by tapping out responses on her tablet since she struggles to speak. Together we studied her robot drawing.

It was composed of two half-human, half-robot women. I pointed to the one in foreground, and I named her “Alpha Robot,” and the one behind her, I called “Beta.” Katie clapped with delight at these names. We had an easy rapport. These robot women walked forward on their own, but their limbs were twisted, and they appeared to struggle. Of course, this reminded me of Katie’s own struggle to walk. The robot torsos were box-like machines. Because of her tightly bobbed hair, Alpha Robot, reminded me of Katie. When I asked if Alpha Robot depended on her machines to speak and navigate the world, Katie nodded and joyfully high-fived me with her hand. I suspected she understood the connection I made between her and the Alpha Robot, and it pleased her. I was thrilled at how flawlessly Katie used her body movements as well as her art to share “the story of Katie.”

Both of the robots appeared to be screaming and running, and I puzzled over this. Since Alpha Robot seemed to be scurrying across a white carpet that was littered with footprints—or knives, I wanted to ask, “Are they running from something dangerous? Maybe knives?” But I held my tongue, and I found myself wondering if Katie’s world sometimes feels like she must walk through a minefield of sharp knives. Then I turned my attention to the brilliant pink swirl that poured from the heart of Alpha Robot. “Coming from her heart,” I said as I pointed to it. Katie nodded vigorously. The pink swooped upward like a huge Chagall vase of flowers. From the mouth of this vase burst two of the biggest and most glorious roses to ever bloom, one white and one orange–like the full-bodied roses my mother grew.

“Wow!” I exclaimed tracing the trajectory of these amazing blooms. Katie clapped at my reaction then she fumbled with her phone before handing it to me. To my surprise the screen framed a poem Katie had written. Although the words were a bit jumbled, I could easily interpret her message. The title was “The Perfect Prejudice.”  “I know I am different and weird,” she wrote. Then she explained how it hurt that other people constantly made fun of her. She wished others could see inside her heart. It they could, she noted, they would know the truth–“I am a good person.” I read the words aloud. Then I looked back to the Chagall vase of flowers springing from the robot’s heart. To Katie’s delight, I traced them again. Then I thanked her for the gift of her story and hugged her.

Tiny Dancer

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When I packed, I rediscovered a simple silver dragonfly.  I bought it for my mom shortly before she died. When I tried to give it to her last February, she insisted I keep it.  She knew we were both facing transitions. Changes. I knew she was preparing to die, and I was struggling to accept it. I decided to wear the necklace on my trip.

In California I became a student again. This time Julia Cameron was my teacher at a workshop. I am rereading and studying her classic, The Artist’s Way. While Julia proved to be an unconventional creativity guru, her advice struck me as completely conventional. She gave homework and reminded my class to do something creative and interesting every week. “Do it alone,” she insisted. “Call it your artist’s date.” I heard moans come from other students in the room.

But I didn’t moan. A prickle ran up my spine. I like to be alone. I have just forgotten this because I love being with people, too. It has been a life-long dilemma. I write alone. But I teach workshops to ten or sometimes two hundred people. I practice my spirituality alone. For three decades I drove eleven miles, five days a week to teach 150 high-energy high schoolers, but many nights I sat up alone, grading their words, their honest attempts to discover who they were.

Yesterday I went hiking alone. My first “artist’s date.” No, I did not take on the Pacific Crest Trail. But I took a short hike in Scotts Valley near Santa Cruz—and it opened up my head. Midway through my tromp among the pine and redwood trees, I sat down on a flat rock and looked up in wonder at the threads of sunlight shooting through the branches of this natural cathedral. I was thinking of how I love to walk and how sad it was for my mother when she could no longer take her own walks—for my mom loved to walk, too.

Then I saw this flash of red. She hovered near me like a tiny toy helicopter. A brilliant red dragonfly. Like a graceful dancer she spun close to me for a long moment as if she had come to tell me something. Then she flew backwards like a hummingbird but returned to hover over me. Directly over me. I watched her wings spin and marveled at her red belly. I had never seen a red dragonfly and she was—well stunning. Then she darted down close to my face before unexpectedly shooting forward into her future and my memory.

It was late last night when I remembered the ruby red dragonfly. I dug deep into my bookbag to find my journal. “Dragonflies,” I wrote. “They stand for changes—and wisdom.” I twirled my pen in imitation of this wonder bug. They can and do fly in six directions at a speed of up to 45 MPH—and they do this with the agility and confidence that that come of age and maturity. I admitted to myself that I am aging, and that since mom’s death, life seems to be passing too quickly. Then I touched the silver dragonfly on my neck and the glimmer I was seeking shot right through me. “While life may seem fleeting,” I wrote, “it can still be lovely and graceful.” Then I realized Mom left me with the knowledge that aging comes with the possibility of wisdom and a deeper understanding of how to navigate the ending with poise and confidence. I thanked the universe for this moment. I can embrace it and try to move forward with the grace of the tiny red dancer I met in the woods.