Thursday May 12, 2011

WE C Hope CEO, Abby White reflects on how the gift of a bag from a young Rb survivor in Texas inspired her to challenge the stigma of eye removal surgery in a very personal way.

My right eye is artificial.  Some people know this, some don’t, but I don’t mind people knowing at all.  In recent years, this has become more important to me.  I find myself regularly removing my “special eye” when in the company of Kenyan children with retinoblastoma because many do not have a special eye, and there is much stigma associated with this – to the point that it can prevent families finding the courage to sign consent for life saving surgery.  It is important to me that the children know they are just as valuable and talented as human beings, even with an empty eye socket.

This practice was inspired by a little girl from Texas.  Maycie Gonzalez lost both her eyes to retinoblastoma to save her life.  Today she is a wonderful, unstoppable vibrant child,  In 2003, while visiting her beautiful family in Houston, little Maycie gave me a tote bag with her pre-K photo on the side (see photo below).  The photo was taken after eye removal surgery, before her special eye was made, so she has a “pink eye” in the picture.

In 2007, I used this bag to carry documents while in Kenya.  Walking down the ward at Kenyatta National Hospital one day, I became aware of growing excitement among the children.  “Mzungu, mtoto – jicho moja” they were calling – the white person!  The child!  she has one eye!”  They crowded around me, touching the bag with delight.  Maycie looked just like them, and seeing her photo on the side of the bag – a public demonstration that having only one eye is acceptable –  was a hugely positive message for them.

Confidence to remove my eye has come in handy in other unlikely areas.  I’ll share just one of many anecdotes.  Late one night in Nairobi, our driver was pulled over for an imagined traffic offense.  Seeing me in the car, the traffic cop suggested if I was his “friend” he could let the situation go.  Being a friend would cost me 5,000 shillings (about US$58).

I said I had no money with me, but suggested I could leave some collateral as a guarantee and return with money in the morning.  This proposal interested the traffic cop (clearly I was an unaware tourist…), and he asked to know more.  I explained that I could leave my eye with him.  Useless to him, but worth $2,500 and, well,  quite frankly I’d want it back!!

What did I mean?  How could this be possible?  He did not understand about artificial eyes.  So keen to educate him, I flicked out my eye and held it in ny hand for him to see.  You would not believe how fast he threw the driver’s licence back at my colleague, with the cry “what sort of witchcraft is this?” and frantically waving us on…

Artificial eyes – and lack of them – is a very serious subject.  Children worldwide are bullied and can have poor self confidence when they do have a special eye, and in developing countries, children are dying for lack of them.  The humour of my story makes a wonderful after-dinner anecdote, but it is also a sobering demonstration of the challenges we face in Africa – to educate about retinoblastoma, eye removal surgery and special eyes, and in so doing, build sustainable, compassionate family support.

The challenges surrounding eye removal stigma are complex, but our passion to overcome them is stronger.  I feel honoured to have a special eye and to be able to use it, by not wearing it, to help spread the message and save lives.

One special girl, two special eyes, and a Ton of Comfort.