26 Jan My Cancer Story Quilt
Thank you, hands.
Thank you, hands of nurses
Who set my IV, wiped my tears, gave me a pill
Thank you hands at the ends of my arms
for pulling up the covers, caressing aching skin
grasping at hope
Thank you to the reassurance of hands
I trembled as my fingers caressed her hair
I slept as he grasped needle and thread to close my wound
I smiled as her hands dipped into paint and created a sunset
Thank you, hands.
You held the sky and me,
You stayed when everyone left
You wrote letters and emails and posts,
You encouraged me
to stitch this story
Since childhood, cancer has been with me. My father’s lymphoma, then death from brain cancer. My aunts’ breast cancer. I could fill scrapbooks with its stories. I could quilt blankets with its emotions. But I didn’t realize its impact until my own. Mine. 2017. I was forty-four with an eleven year old daughter. Mammogram, ultrasound, biopsy. The Phone Call. A full calendar of appointments. Surgeries, chemotherapy, radiation, medications upon medications. My childhood memories came flooding back. My fear of death and dying. My embarrassment and shame of how sick my dad looked. His silence. As a child, I didn’t know what to say or do. What do I say now? To my own daughter? To my husband? My marriage was falling apart, and cancer exposed the cracks. I needed to tell my story. I needed to help children like my daughter, like the girl inside me, in ways that I had needed so many years ago.
I turned to my hands. Creating for myself, for those who helped me, for my daughter and all the children who have been impacted by cancer.
During my treatment, I wrote a children’s book, The Little Green Monster: Cancer Magic! And crowdfunded its publication. Since 2018, I have supported over 2,500 families with book donations and free creative arts workshops, focused on using creative expression to process emotions and cancer. This year, I co-founded a non-profit, Well Beings Studio, to pursue this mission further. Well Beings Studio engages the creative arts to open communication and support emotional well-being of families impacted by cancer, other traumas and difficult times. We focus on understanding emotions; processing change, grief and loss; and utilizing reading, writing, and creative arts for well-being. We work to dismantle stigmas about cancer, emotions, and asking for help. We are committed to inclusion, equity, and sharing multiple voices and diverse perspectives on creativity and wellness.
Our newest resource is the My Story Quilt app, inspired by our arts and emotions workshops, and The Little Green Monster: Cancer Magic! book. In the app, families can:
- Engage in conversations about cancer and emotions
- Tell your own cancer story and read others
- Make monster friends, art, music, poetry
- Write letters and give acts of kindness
- Create playful memories with treasure hunts, dance parties, and silly stories
- Connect with loved ones, including those in treatment at the hospital.
Our app is designed around the concept of quilting. Quilts provide comfort and have been historically used throughout different cultures to tell stories. Quilts represent resourcefulness because they utilize a variety of leftover fabrics. Friendship quilts were historically made by friends as a gift of remembrance. A story quilt is made with pictures, sounds, scents and textures to tell a story and can be made with a group to tell about a moment in time, an event or a feeling that is important to you. The center-point of the app is a nine square quilt that offers interactive opportunities for comfort, creative expression, communication, and collaboration between family members on the cancer journey—and the opportunity to create an evolving chronicle.
I was inspired to create this app to break silences and stigmas about cancer and emotions. I remember my own silence during my father’s cancer, and how much better my daughter’s experience was because we talked and created together during my cancer.
Our intention with this app is not only to create joyful experiences and memories, but also to break these stigmas taught by society and affect us as individuals. Stigmas happen when we feel embarrassment and shame and become silent about our experiences, isolation, and other barriers to well-being.
Having cancer in our society can be seen as a mark that sets someone apart, particularly since the disease is life-threatening. We have a culture of fear and silence about dying and death. Showing emotions in our society can be seen as a sign of weakness or being out of control. People fear difficult emotions and may believe that expressing them will overwhelm them and be permanent.
A family member with cancer might think…
I’m weak. I need help. I’m not healthy. I’m different. My family isn’t normal.
I don’t feel worth loving. I don’t feel attractive. I can’t provide for my family. I’m not me anymore.
Children of a loved one with cancer might think…
I don’t want to lose you. I’m scared you will die. This is my fault. I am mad at you for changing. I feel bad that I’m mad. I feel out of control. I need to be strong for my loved one. I don’t want to add to their problems. I don’t want to be a burden.
Our app, My Story Quilt, and our other resources and creative workshops encourage families to break these stigmas through open conversations and creative expression. We focus on three goals:
- Self-compassion: Acknowledge emotions, be present, learn about the feelings in our bodies and listening to ourselves.
- Safe vulnerability: Talk about feelings, express emotions, and communicate about cancer.
- Holding space: Listen to others, support their emotions and stories, share and discuss cancer information and emotional support.
At this moment, I am thankful for my hands, as I type these words and share with others. My hope for 2021 is that we can support more cancer-impacted families in innovative, creative ways.
Well Beings Studio offers free art-based resources and workshops, including donations of books and art supplies to participating families and partner organizations. Join us!
By, Sharon Frances, PhD, Director, Well Beings Studio www.wellbeings.studio
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