4 Key Ways Sharing Your Story Makes a Difference, and Tips for Telling
Monday January 20, 2020
Every individual in the retinoblastoma community has a unique story to tell – whether parent, survivor, sibling, professional, extended family member or supporter. Abby White explores the importance of storytelling, and the many ways in which sharing your story can make a difference – to your own life, and to the world.
Parents, children, survivors, friends, and extended family members gathered for WE C Hope California Family Day in 2019. a wonderful opportunity to share stories and encourage one another.
Your Story Matters
Stories have been at the heart of all cultures throughout history. They help us connect with one another, explore reality and possibility – or escape from it, share knowledge and wisdom, make sense of our past and present, and shape our future.
Our brains are hardwired to think, learn, and act most effectively through stories. Even at night, our sleeping mind creates and processes in the storyland of dreams. While facts and data activate only limited brain activity, stories engage large swathes of the brain in unison to stimulate a powerful emotional response.
So while solid information is vital to guide informed medical care, hard facts alone can be difficult to relate to, absorb and remember. Personal stories create human connection through which the audience can learn more, with deeper understanding. They can recognise similarities in their own life more quickly, recall information more easily, feel part of something bigger than themselves, and be more compelled to act.
As an individual touched by retinoblastoma, your story can make a difference – to yourself and to the world. You can be an informative bridge between unaware society, rational clinical care, scientific research, and the lived experience. Your telling can be cathartic, bring new perspective, build community, and weave a potent gift of hope.
1. Stories Raise Awareness
Sharing your story is one of the easiest and most important ways to raise awareness about retinoblastoma and its early signs. Our personal stories also highlight lifelong impacts, such as treatment effects, genetic implications and second cancer risks.
Most primary care professionals, paediatricians and other specialists are unfamiliar with the early signs of childhood eye cancer and its lifelong consequences. Even ophthalmologists often lack knowledge and understanding of RB1 genetics and resulting patient and family care needs. So parents and survivors routinely find themselves leading their own healthcare, educating themselves so they can recognise symptoms, seek referrals, and advocate for effective care.
Many people first learn about retinoblastoma, its symptoms, genetic implications and lifelong risks when reading other people’s stories – relatable human experience shared on social media or in the news.
Sharing your story can spark curiosity, questions and action in the reader. Especially when they already seek answers but don’t know where to find help, or they lack knowledge and accurate information from their own physician.
Rowan was diagnosed with retinoblastoma in Florida after her mother’s friend in England alerted her to the significance of a white glow in her eye. Reading about Rowan’s diagnosis in the news led other parents to their child’s diagnosis, including one baby girl in Ireland:
“I was flicking through the Daily Mirror over breakfast when I realised the picture looked like Brooke’s [eyes]. If we hadn’t seen the article we would have been none the wiser. It was a godsend. We are just so glad the Mirror printed the story and it was a full page and wasn’t side-lined. I never heard of the disease. Honest to God the article saved her life.”
Rowan and Brooke during a holiday in Florida – Rowan’s story saved Brooke’s life.
2. Stories Increase Understanding
Our stories reduce the distance between our lived experience and the science, statistics, and semantics of medicine. They become a meeting place through which we can speak and offer deeper meaning to the work of everyone in the care and research team.
In recent decades, patient and family centred care has become established as a hallmark of excellence, especially in paediatric medicine. The importance of patient, family and survivor life experience is increasingly recognized today in medical learning and development forums, ranging from presentations at conferences and research development meetings to fully collaborative workshops.
Bringing the human dimension of retinoblastoma into these forums causes medical professionals and scientists to look up from the microscope, from the eye. Our stories ask them to think and feel as we do. They convey difficult concepts and urgent questions in a powerful way that no factual presentation alone could match.
By discussing all aspects of the family and survivor experience, we increase the likelihood that care and research priorities will reflect our key concerns as parents and survivors. As we enrich awareness and understanding within the community, we may inspire researchers to take up new areas of investigation previously considered unimportant – or not considered at all.
Sandra Staffieri, a clinical and research orthoptist in Australia, credits the 2012 One Retinoblastoma World conference – a parent-survivor-professional collaboration – as her motivation to research early diagnosis:
“As each presenter said their piece, the lightning bolts hit me: I had NEVER thought about ‘late diagnosis’. I had NEVER thought about children dying from retinoblastoma as a result…But I knew we had many children who had early signs that went unnoticed. How could I have been so naïve and closeted in my thinking? How could I have presided over late diagnosis for so long and never given a second thought to why it was happening? Or worse, not done anything about it.
I had just spent the four preceding weeks trekking across the world trying to see what we could do better when really, our model of care was just as good as anywhere else. But I had never thought about the greatest challenge that faced children with retinoblastoma worldwide – early diagnosis. In reality this should be the easiest thing to fix.”
There are times when something relating to retinoblastoma may be represented incorrectly, or negatively, with impacts on our community. Fear of eye removal surgery, for example, can prevent parents from seeking appropriate life-saving care for their child. Often those fears are complicated by stigma around blindness, and sensationalized coverage of eye salvage therapy – within the media and within our own community.
Our diverse, honest and open personal experience can help quell those fears, dispel misconceptions, break down barriers, fight stigma, prejudice and discrimination, and overcome limiting – sometimes life-threatening – beliefs.
Carol recalls how a shared understanding and tight community carried her through the most difficult time in her son’s treatment:
“I couldn’t imagine my 17 month old son without an eye. But after a lot of counselling, I consented to the surgery….My worst fear and anxiety was giving my innocent child to the doctors and waiting for many hours, not knowing what was happening behind those doors…The mothers and nurses on the ward were of big help to me. They tried to counsel me and encourage me that we were many on this journey, we are not alone.”
Emotional reactions stimulate the practical response. When we feel empathy for a story’s characters and their experience, we are moved to help wherever we can. Our stories connect potential donors with the specific needs of our community, and motivate their support of work that will enhance our lives and advance care.
Friends, acquaintances and strangers may also ask questions about retinoblastoma or its impacts. Responding with a prepared story can be hugely empowering, especially when enquiries are unwelcome. Our resident Child Life Specialist, Morgan Livingstone, provides advice for talking about your child’s cancer diagnosis with family and friends and responding to hostile or unwanted attention.
By sharing our story, we can also gain new perspective. Thinking about why we want to tell our story, what aspects of our experience we want to share, and how we can best do that invites us to view our complicated experience from different angles. We can step away from our pain to examine the many facets of the gem this journey has hewn us into. We can better understand those parts of ourselves that capture and reflect the light in all its brilliance, and the dark sides, and know they are equally important in shaping our lives.
International Nurses Day in 2018 gave one mother the opportunity to reflect on the experience being a “Registered Mom” – a professional nurse and mother to her child with retinoblastoma:
“Sometimes it truly is a curse, not a blessing, to be in the medical profession when a family member is sick. You don’t want to know what could happen down the road. You don’t want to understand what’s going on…but you do. When my son was diagnosed, all I wanted to do was be his Mom. There were days when I wanted to tell the doctors and nurses to speak to me as they would to any other Mom who wasn’t in the medical field. There were times I didn’t tell anybody I was a nurse.
I’ll never know how or why my son got retinoblastoma. What I do know is that it’s helped me become a strong person, both personally and professionally. It’s helped me realize to get through life, you have to take things one day, one moment at a time. You have to roll with what you get and what you have, or else it will be the end of you. It’s helped me to be more compassionate and empathetic towards people, both as a nurse and a Mom. As my kids get older, I see them exhibiting these traits to others also.”
Creighton and his Superstar Sisters – Ellery (blue shirt), Amelia (dark blue hoodie), and Madelaine (Yellow Iowa shirt).
3. Sharing Experience Improves Quality of Life
Many parents, grandparents, survivors, siblings and others affected by retinoblastoma find release in telling their story. We may be cautious about sharing deeply personal parts of ourselves and our family life, especially if we are still in the midst of that difficult journey. But our vulnerable and courageous words help create a pathway to our own healing and well-being.
Research finds that physical health is enmeshed with mental health – important for all in the retinoblastoma community. Speaking up helps to ease out our emotions, to diffuse anger, fear and stress. It allows us to acknowledge the ways in which this cancer has changed us. Our honest words, and those who hold space for them, help us grieve. As we release burdens and negative energy, we can assess our experience and circumstances more objectively. We can begin to take back control and find positive ways forward to healing and a better quality of life.
Jim Valavanis discovered the healing power of storytelling after his son’s second eye was removed to save his life.
“In the end we had no choice and would rather have our son alive and without sight than six feet under. This was by far the hardest decision of our lives. We felt extreme guilt for a very long time that we had made our son blind and changed the course of his life forever…We experienced so many emotions in the first year. Everything from anger to guilt, through to anxiety and depression, just to name a few.
We discovered that men and women deal with things very differently. My wife, Lisa, was able to talk about her feelings and emotions more openly and honestly. I withdrew from society and tried to deal with the situation on my own and hide my emotions. After all, I was a man and had to remain strong and stoic for my family. This went on for years and I ended up in a very dark place, until I took the brave step of seeking help and shared my experience about how I was really feeling. A big part of my recovery came about from writing things down on paper…”
The day after the second eye-removal surgery that saved Sam’s life and took his sight forever.
4. Shared Experience Builds Strong, Healing Community
Humans have an irrepressible need to unite and belong. We thrive when we feel seen, heard and understood. Many families and survivors are ravenous for connection with others whose lives reflect their own. The rarity of retinoblastoma and resulting isolation makes it vital that we share our stories wherever possible.
10 years ago, sharing our stories directly with other families and survivors was difficult. But all that has changed with the arrival of smartphones and social media. Today, we can discover people with shared interests on the other side of the world in just a few minutes. We can participate in special interest groups, talk with people in other countries for free, and (admittedly rarely as yet) join livestream meet-ups.
When we meet others who share and understand our experience, we know we are not alone, that far from being a dark void, our path is filled with the vibrant glow of community. Hands reach out to help when the load seems too hard to bear, and friendships bloom in the dust of adversity. We may never meet in person, and we may not be able to see where our unique paths lead, but in sharing our stories, we have the comfort of travelling together.
Jennifer reflects on the impact of the women who form a Facebook group for mothers of children with retinoblastoma:
“All have their own story, some great outcomes, some left with more challenges to deal with. All are fighting desperately to save their child’s life. They are the ones we bounce off when the rollercoaster takes a dip with a recurrence at EUA, this happens frequently on the retinoblastoma journey as recurrence post chemotherapy treatment is common.
They travel with you in silence until you call out for support. In time, you become the silent but omnipresent RB mom…there to listen and sympathise with the new arrivals to your world…disorientated and still nauseous from the first violent twists and turns of the rollercoaster that is childhood cancer.”
Be the Author of Your Life Story
“Stories can conquer fear, you know. They can make the heart bigger.” – Ben Okri, poet and novelist
Sharing our retinoblastoma story enables us to create a narrative of our experience, to be a witness to childhood eye cancer, rather than its victim. Whether that be educating the public through a media story, mutual support within online communities, immersive storytelling through literature, photography or art, speaking at a conference or workshop, or myriad other opportunities.
Through storytelling, we can reclaim our lives, and own our medical experiences. Together, we can form a compelling document of retinoblastoma from the family and survivor perspective – for ourselves, our individual families and global retinoblastoma family, and for the medical community who seek to improve care. For the greater community – who may be the parents of tomorrow’s young patients, and the donors supporting advances in care.
Watch this video playlist (three videos) to discover how storytelling at One Retinoblastoma World 2017 in Washington D.C. helped medical professionals, parents, and survivors.
How to Tell Your Story
“We tell ourselves stories in order to live.” – Joan Didion, writer and journalist
Every story is a unique, potent resource for advocacy. As storytellers, we have a responsibility to recognize the power we hold, and to think carefully about how we want to use our experiences for good.
Take some time to prepare your story before sharing it with others. This will enable you to have control over the story you choose to communicate, how you choose to share it, and even the words you use. You may also have opportunity during this planning to practice and develop communication skills, and grow your confidence. This can be especially helpful when speaking to the media, giving a presentation, or responding to unwanted questions from friends, relatives and even strangers.
Use these questions to help identify and develop your story for maximum impact.
- Do you have a support plan? Sharing your story may stir up surprising amounts of emotion. Think about how you will share your story, whether that medium has inbuilt support (e.g. online survivor forum, or conference where you will meet others in the community). If not, this may be a good time to seek out the support of a good friend.
- How much are you willing to share, and what are your limits? As keepers of our story, we have the right to choose what we tell and what remains private. Think about what you are comfortable sharing, and where your planned telling causes you unease. Listen to your body and mind to help you identify your boundaries, and ensure you convey them to others, when appropriate.
- Does your family support you telling this story? People experience retinoblastoma differently, and we process our responses in different ways at different times. Mothers and fathers, parents and survivors, share a common story – but unique experiences of it. They often discover their feelings conflict about what they wish to share and keep private. Respecting everyone’s feelings and right to privacy is vital to their own wellbeing.
- What do you want to accomplish, and what key message do you want to convey? Keep is simple. For example: I want to raise awareness, with the key message that white pupil is an early sign of Rb, and parents should request an eye exam if they have concerns about the appearance of a child’s eye/s).
- What parts of your story can you focus on to achieve this? We can tell a single story many times from different angles, depending on what we want to highlight. How can you tell your individual retinoblastoma story to most effectively deliver your message?
- How can you make your story stand out? Your story is already captivating fashioned as it has been in the crucible of reality. But weaving in other materials creates a truly convincing presentation. Photos and / or video can illustrate your message and add emotional resonance. Signposting to websites like our Retinoblastoma Resource expands on the knowledge you provide.
- What is your call to action? Do you want people to do something in response to your story? Perhaps take regular photos to check for red-reflex, visit a website, make a donation, have a conversation… State clearly what they can do and how.
Tell Your Story with WE C Hope
Would you like to share your retinoblastoma story to raise awareness and help others in the community? If so, we would love to hear from you.
On Through Our Eyes, families and adult survivors from around the world share their experience of retinoblastoma and how it has shaped their lives. All children included in this section are at least one year beyond their last treatment. This gives a clearer understanding of the outcome and the family’s experience, particularly for readers who seek knowledge and encouragement during diagnosis and treatment.
We also share regular awareness raising content – blog articles, videos, information pages and Through Our Eyes stories that highlight early warning signs, how to look for them and what to do if concerned.
Many of our blog posts (also shared widely on social media) feature family and survivor experiences, either as guest articles, or contributions. We often invite our community to contribute to articles on specific topics, and we encourage you to get involved where you feel drawn to do so.
To Share Your Story
We look forward to hearing from you, and helping you to share your retinoblastoma story.