Voices: Beyond the Beads
by Lani Sinclair
At the conference, most of us wore beads of different colors to signify whether we were breast or ovarian cancer survivors, previvors, genetic counselors, health professionals, or supporters. I wore beads to indicate I am BRCA negative. Several people asked me, “Then why are you here?” The answer is complicated. My sister was a founding member of FORCE, and I’m now on the Board, but there’s more to my commitment to this organization.
Last year, when I turned 57, it was an overwhelming yet triumphant birthday for me; a milestone no other woman in my family had achieved. My family history was devastating. My grandmother Lorene died of ovarian cancer when she was 39. My mother Betty died of breast cancer when she was 44. My cousin Donna died of ovarian cancer at 41, and four years ago my sister Sherry succumbed to ovarian cancer at age 56.
During Sherry’s 10-year battle with ovarian cancer, she became involved with many organizations. But FORCE became pivotal for her: a burgeoning organization that was one of the first to address the impact of hereditary cancer on families like ours. As a founding member of the Board, her life soon revolved around FORCE activities and members.
My own genetic testing results came back negative. This was wrenching for me, given my sister’s diagnosis. I suffered survivor’s guilt, which Sherry and I discussed. She recruited me to volunteer for FORCE; since I’m a writing consultant, she suggested I help with grant applications. Thus began my involvement with FORCE, where I kept a low profile because Sherry was such an energetic, effective, and dominant influence wherever she went.
After Sherry passed away, I was reluctant to increase my participation. I knew I could never fill her shoes. Yet I felt committed to FORCE, knowing how incredibly important it was to Sherry. FORCE helped her immeasurably during her illness. FORCE members became her loving friends. FORCE as a community of people who understand what my family has been through, and how family losses have impacted me, was important to me too.
When my mother died almost 40 years ago, nobody talked about hereditary cancer. My doctors noted her death in my files, but said little else about it. They didn’t mention, and I had no idea, that breast and ovarian cancers were linked. My grandmother’s abdominal cancer was probably ovarian but nobody talked about ovaries in the 1930s. When my cousin was diagnosed with ovarian cancer in the 1980s, I assumed our family was doomed and that I would someday be diagnosed with cancer. Sherry and I often discussed how an organization like FORCE could have helped us during those years. Now due to FORCE’s efforts, families like ours are much more informed and have far better information and more options than we did when our family history was being written.
This is a longer story than colored conference beads can reveal. I may not have had cancer, prophylactic surgery, or breast reconstruction—but I share with the rest of our community a passion and dedication to FORCE.
Exercising the Mind-to-Pen Connection
by Kathy Steligo
For every action, there is a reaction. That was certainly the case in our Writing for Power, Peace, and Publication workshop during the 2007 Joining FORCEs conference.
This session was about writing for ourselves. We weren’t concerned with sophisticated techniques, clever turns of phrase, or what others might think of our words. Our goal was to simply have a written heart-to-heart chat with ourselves, by freeing and recording our innermost feelings about hereditary cancer.
We began with off-topic warmup exercises to help us get our minds in the mood. Using “clustering” techniques, participants freely associated words and ideas around a central theme of hereditary cancer. They then focused on writing about one or more of the themes in greater detail without immediately editing or censoring; that’s something that can be done later. Putting aside our inherent constraints—concerns about grammar, style, punctuation, and sentence structure—while we write allows us to express our true emotions. This powerful methodology often produces surprising perspective, understanding, and awareness.
Although each participant held deeply personal experiences and thoughts about hereditary cancer, within the workshop’s supportive environment, several common themes became apparent when people began sharing what they had written. What was revealing for one became a lesson or validation for others. Many attendees felt their writing brought clarity and understanding of fears, guilt, or anger about being BRCA positive. Others said the freeform exercise gave them a new awareness of previously unacknowledged emotions. One woman told us she gained a fresh perspective about being BRCA positive, one that she planned to use as a springboard for difficult conversations about genetic testing among other family members. Another attendee said that writing helped her to understand her long-held sentiments of denial and confusion regarding her mother’s bout with cancer years ago; she felt further exploration of these feelings would help her open fresh dialogue about issues they were never able to discuss before.
In this workshop, we concentrated on a singular action: writing without constraint. For most, if not all participants, reaction was immediate: acknowledging and thinking about hereditary cancer issues in a new way. It was an inspiring and rewarding experience.
Just Write! Five Tips for Getting Started
- Warm up by first writing something off topic.
- Write without editing or censoring yourself.
- Write what you feel, without analyzing your feelings beforehand.
- Write from your heart, not your head.
- Keep your hand moving!
Kathy Steligo is the editor of Joining FORCEs and author of The Breast Reconstruction Guidebook (www.breastrecon.com). Her article “The Language of Mastectomy” appeared in the Fall 2005 issue (Vol. 1, Iss.2) of Joining FORCEs.
Share Your Story
Do you have something to say that may inform our readers or ease their experience? We invite you to share your reflections or personal story about dealing with the issues of hereditary breast or ovarian cancer. Tell us how you feel, how you cope, or what you’ve learned.
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