Tuesday February 26, 2013

Rb survivor and World Eye Cancer Hope co-founder, Abby White, reflects on the mixed blessings and rich experiences of living with and beyond retinoblastoma.

“Retinoblastoma” was part of my vocabulary growing up.  My father lost both eyes to the cancer before his second birthday, my mother was a co-founding board member of FISHS and the Retinoblastoma Society (now the Childhood Eye Cancer Trust), and I attended many board meetings and family days as a child.  Yet I don’t recall considering myself a “survivor”.  I think survivor culture has emerged only in recent years.

As a child, I certainly stood out from the crowd at school.  Shadowed by a classroom support worker, removed from lessons for typing classes, mobility training and other “rehabilitation” services. I immediately failed to fit the regular expectations of my peers, despite the school having a specialist Vision Impaired Pupils (VIP) unit.  My small eyes, radiation damaged bones and lack of confidence made me an easy target.  Recalling the nickname “Predator” still burns my heart 20+ years later.

Discussing a bullying situation once, my father asked if he and my mother made the right decision to fight for my place in a mainstream school.  He attended Worcester Grammar School for the Blind – a school where one would expect the students to be understanding of one another’s situations.  Yet bullying existed even there.

There are many reasons why children bully others, but I believe young children in particular use bullying to gain power over something they fear or don’t understand, rather than to deliberately hurt the recipient.  Bullies are often very observant of the world around them, and while adults often deliberately attack others to for personal satisfaction or gain, I believe most young bullies simply want to understand their world but lack the support, information and resources to enable their personal growth.  I didn’t understand this as a child, but as I have grown older this awareness has helped me accept my school experiences and let go of much anger towards those involved.

The bullies did have one positive effect.  Years of hiding in the library to avoid them paved my path to university, both undergraduate and postgraduate.  I doubt I would have won a place at Oxford without that indirect discipline to spend countless hours buried in books.

My father died just before my last undergraduate year.  So the day after my final exam, I flew to Kenya, his birthplace and our shared spiritual home, to work with a community development charity.  My experience there was so varied, from tagging and documenting black mamba snakes on the shore of Lake Victoria to helping establish a Women’s Credit Union Co-operative that is still active today, being caught up in Nairobi’s US Embassy bombing in August 2008, and backpacking solo from Mombasa on the Kenyan coast to Masaka in southern Uganda – and many points in between.

This time in Africa truly showed me that, with the right support, limited sight is what you choose to make of it.  People have a preconceived idea of what one can and cannot do (even what we should and should not) with low/no sight, but that doesn’t mean we have to fulfil their expectations.  How ironic that as a child I was desperate to fit the ideals of the bully, while as a young adult I was keen to break the boundaries.

So many experiences clamour for the title of most exceptional: holding a newborn lion cub as a child, studying at Oxford University, taking a spin in an F50, microlighting over Victoria Falls, helicopter flight over Niagara Falls, visiting the Grand Canyon, swimming with dolphins in the Bahamas and manta rays in the Indian Ocean, beachcombing and paddling between tiny islands in Fiji, establishing a charity, walking the full length of the River Thames, trekking 100k across Tanzania’s Great Rift Valley, camping under a wild African sky, walking across burning coals hotter than 1,000°F.

Would I have done these things had I not had retinoblastoma?  I’d like to think so, but looking at them, many were driven in some way by my Rb experience.  I found myself in Fiji for 4 days only because I attended the world congress of the International Society of Paediatric Oncology in New Zealand in 2011. I trekked the Thames Path and Great Rift Valley to raise funds for a beautiful African child with Rb, and flew over Niagara Falls with her family only because she was dying.  I visited the Grand Canyon with a dear friend because of our connection through her family’s Rb experience.

I co-founded Daisy’s Eye Cancer Fund (now World Eye Cancer Hope) because I believe Rb care for all children can be far better than it is at present, and I walked across burning coals to raise funds to help move that vision forward.  Some might say I walk across those burning coals every day by simply challenging the status quo of medical care.

I have walked across burning coals, physically and metaphorically.

Many dark threads have, and continue to, run through my life, but taking time to look for the threads of gold and silver reminds me while life beyond retinoblastoma may not be normal, we definitely can live a very interesting, vibrant adventure.  I am thankful for the many experiences I would never have been blessed with, had I not been born with eye cancer.

Below are some favourite links to inspiring stories of other active Rb survivors.  Enjoy!

• Krystel Keller – Australian musician and motivational speaker
• Michel Ongaro – Kenyan musician
• Ivonne Marcela Mosquera-Schmidt – US Paralympic athlete
• Emily Pickett – US high school volleyball star
• Kyle Legrasso – US golf star in the making
• Reg Webb – English musician and radio DJ
• Jeff Healey – Canadian musician and radio DJ