Being different is bad. It's a lesson most of us learn in the playground. Mercifully for society, it's a lesson most of us go on to unlearn. But for some miserable unfortunates it sticks around. And, for me, it did more than stick. It got swallowed. It became physically part of me – like a filter, a lens through which I see the world.
When I was seven, my family moved to Tokyo. Mum enrolled me in a ballet class. We arrived at the dance studio to discover that none of the Japanese kids had ever seen a blonde girl before. I still have visions of that hall of mirrors, those armies of identical giggling ballerinas.
When I was 12, my family moved to Sydney. On my first day at school, the teacher asked me to stand in front of the class and tell them where I was from. So I did. Then she repeated my every word in a mock English accent. If I had to pinpoint the exact moment I learned my lesson, I'd say that was it. It was while living in Sydney that Mum began to notice I was having trouble seeing. I was always bumping into things – overhanging branches, toys left on the floor. Initially she found it funny, but after our first appointment with the ophthalmologist, she stopped laughing.
I was diagnosed with retinitis pigmentosa. It is a genetic disease that affects the parts of the eye that deal with peripheral vision, night vision and light adjustment. There is no way of knowing how quickly the condition degenerates into blindness. Some lose their sight before they turn 20 and some retain a small window of vision throughout their life. I was referred to a psychologist to help me digest the information and advised not to take my driving test. I was also advised to learn how to use a white cane.
In typical teenage fashion I told the psychologist where to stick it and reacted to the idea of a cane with such fury that my parents never dared raise the subject again. I would, quite honestly, have rather died than take a cane to school. Thankfully, I never had to. In fact, I didn't have to tell anybody unless I chose to do so. My strategy of denial worked wonders – though I was terrible at netball. And most of the time I forgot I had a problem at all. Until I bumped into something. And then it would be a battle to hold back the tears.
I confided in my close friends and they took my arm as we strutted around Kings Cross on Saturday nights with our fake IDs. They led me into darkened pubs. They even helped me assess boys on dance floors using, as I recall, the terms: "hot", "semi-hot" and "feral bush-pig".
The enthusiasm with which these girls adapted to my strange disability was touching. And baffling. I never really understood why they didn't just leave me at home.
But this happy arrangement was short-lived. I moved back to England for university and reverted to outright denial. I walked slowly and appeared vague. Fellow students thought I was permanently stoned, which was fine by me.
When I moved to London and began a career in television documentaries, I did everything I could to appear normal. Occasionally I'd miss a handshake and have no idea how to deal with it. It was the most stressful time of my life.
Today, aged 34, I have very little sight. While the average visual field spans 160 degrees, mine spans four degrees. I am registered blind with my local council. I know this sounds shocking. But it isn't. I function pretty normally. I move my eyes around and get as much of the picture as I need. I've never been happier. I have a wonderful husband, a gorgeous two-year-old daughter and I love my work as a writer. The fact I bump into things a lot is very low on my list of worries.
I still don't use a white cane. I'm not proud of this fact. I really ought to. I own one. It sometimes lives, folded up, in my handbag. I took it out for a spin the other day. I'd been inspired by comedian Adam Hills joking about the Paralympics on Channel 4.
I went back to Sydney recently. My friend Jane noticed my tinted glasses on an overcast day. "Are you wearing sunnies cause your future's so bright?" she quipped.
Later, as we dined in Bondi, we were gossiping about a girl at school we had both admired. "She had something special. She had what you had," said Jane. "What's that?" I was taken by surprise. "I dunno," said Jane, "She was from the outside. She was different."
"Why do you think being different is bad?" asks Seema, a therapist who is helping me use my cane. "Some people love to be different."
This makes me think of my Dad. When I was young, he would hold my hand and skip down the street singing in his native Italian. Mortified, I would beg him to stop. "For a girl who is so intelligent," he would exclaim as I wriggled from his grasp, "you are emotionally stupid."
Then I think of my tiny daughter. One rainy day, we were in a charity shop when she persuaded me to buy her a glittery snorkel mask. Later, as we walked through the downpour, she held her umbrella and wore that mask with such beautiful beaming pride that several strangers stopped to smile.
Seema explains that, when we are young, the lessons we learn can become embedded in our subconscious. They become almost physically part of us. Those feelings are deep and hard to shake – hard, but not impossible.
"Being different isn't bad," she says gently as we end our session. "Being different is a gift. It is something to be cherished."
Annalisa D'Innella is a writer for film, TV and radio
- Symptoms of Retinitis Pigmentosis (RP) usually begin in childhood or early adulthood.
- RP is not one disease but a group of inherited conditions affecting the cells of the retina and leading to a gradual lost of vision.
- Sufferers may initially find it difficult to see in dim light, then begin to lose peripheral vision.
- Loss of vision is progressive over many years as the the photoreceptor cells in the retina gradually stop working. The speed of deterioration will vary from person to person.Some will eventually become blind, but most people will retain some vision into old age.
- There is currently no cure for RP. There has, however, been some progress in research into treatments. Investigations are focused on gene therapy, stem cell therapy, transplantation and artificial vision, and it is hoped that some treatment may be available over the next decade.Reuse content