Wobbly Wednesday, the second international nystagmus awareness day, inspired tens of thousands of people across the world, but also highlighted the challenges of this complex eye condition. Rhys in Australia tweeted “I love the term Wobbly, Some days are wobblier than others. Thank you for the affirmation of Wobbliness. I feel empowered.”
In the US, Apl.de.Ap, who has nystagmus and is a member of the band Black Eyes Peas, contributed to the flood of messages about Wobbly Wednesday on Twitter and elsewhere. The mother of an 11 year old in New York praised her son for making an announcement at school. “This bold confidence was unheard of in my brother's generation, much less my grandfather’s (who was made to wear a "dunce" cap). I am nervous and proud at how far we have come!”
In the UK, three year old George was one of many children who found the courage to tell classmates about his wobbly eyes -- then they all got to share some wobbly jelly. Jelly featured elsewhere too. Teacher Dan let kids in his school throw jelly at him to raise funds for the Nystagmus Network. For adults, Caroline mixed jelly and vodka – also to raise funds and awareness.
Sean wrote on Facebook: “24 years of my life I live with this eye condition. I've been bullied from my elementary days till my high school days and it’s really difficult for me to work properly. But still it’s not a hindrance for me to be loved and have a family.” In similar vein, Anna wrote: "I'm a professional cameraman & race bikes for fun. Don't let #nystagmus cramp your dreams.”
Determination will overcome many challenges, but not all and it’s important to remember that nystagmus affects people to different degrees. Caitlin told of how she can’t play tennis – the ball moves too fast and people with nystagmus need more time to see. Mike emphasised how nystagmus can vary throughout the day with a Tweet that “tiredness today means that even with my monocular I can see several hundred yards less than usual.”
Our patron, footballer Steven Reid, talked to his local radio station about his son’s nystagmus. NN development manager John Sanders was interviewed for two radio shows, while in north Wales Tracey gave what is probably the first ever radio interview about nystagmus in Welsh.
Hospitals and eye health professionals spread the word too. Liverpool Orthoptics Society made and sold cakes like eyeballs to raise awareness in the city centre. Orthoptists in Bournemouth, Oxford and many other hospitals put up fabulous displays and notice-boards to highlight nystagmus to patients and colleagues alike.
In the UK, many families took advantage of Wobbly Wednesday falling on Bonfire Night to hold fireworks parties to spread the wobbly word. Around the world, illuminating landmarks such as Niagara Falls, Blackpool Tower and the CN Tower in Toronto put nystagmus in the lime-light on a slightly bigger scale.
The impact of all this activity was colossal. In the UK our social media reach increased by over 200 per cent. Website hits approached 1,000. And India joined in the activity for the first time too, with an article about nystagmus in a newspaper in Goa and a letter to the Indian Prime Minister.
Whatever you did, thank you from the Nystagmus Network to everyone who took part. We’ll do it again next year, only bigger and better. We’ll leave the final word to a grandfather who tweeted: “if you don't know what #WobblyWednesday is my grandson could tell you, he has the condition.”