If you are looking for me, chances are I will be travelling to far flung places, horse riding, hiking, rock climbing, scuba diving or attempting to ski. Or I could be telling a funny story about the time I sat on stranger, tripped over a dead person, stumbled into a pig carcass, wandered into a crime scene or got my leg stuck in a long drop toilet. Otherwise I could be at work, doing my bit to help vulnerable people.
I look normal to most people but have already lost over 90% of my vision due to Retinitis Pigmentosa (RP). The most significant effects are night blindness and tunnel vision. I can’t see distances nor anything to the sides. Sunlight hurts and I can rarely see much without strong contrast. I have very little depth perception which makes walking down stairs difficult. The text I read needs to be enlarged. I also have macular oedema, which distorts my vision even further, like opening your eyes in water. My right eye is all but destroyed from this pesky intruder.
Diagnosis and the darkness
I was diagnosed with RP in my early 20’s and it was a significant shock for all of us. There is no family history and no one knew that I couldn’t see. Not even me. On the bright side, at least it explained my lack of coordination and terrible driving. My mum still turns pale when she thinks of her experience in trying to teach me the rules of the road.
Following the news, I explored various blindness organisations and searched for support groups. While I found few, at the time they seemed to be for the ‘really blind’ people and I didn’t fit. I couldn’t relate and was quite confronted by it all. It was a lot to deal with as a young person and I was quite distressed.
I felt anger, frustration, isolation and fear. I couldn’t talk to my parents as they were overwhelmed with guilt and sadness, and while they tried, my friends couldn’t really understand.
The shock of being diagnosed soon gave way to denial. Total vision loss seemed so far away and so I ignored it for a while and went back to being ‘normal’.
But after a while, things started to get harder. I struggled with social interactions and had to give up driving. I found it difficult and embarrassing to ask for help. I hated asking people to give me a lift and help me to get to the toilet. I would have panic attacks and get anxious in unfamiliar places or when I wasn’t sure how to get home. On several occasions, I cried far more tears at parties than was socially acceptable.
Eventually I sought out counselling to help me cope with the grief and loss. This helped immensely. And while I got myself back on track, I didn’t realise it would be an ongoing process. Having a degenerative condition means that your period of adjustment is continual. It is normal to experience highs and lows depending on life circumstance and it can often take time to adjust.
Emotions attached to deteriorating vision loss, however gradual, can sneak up on you when you least expect it. You may go to do something you have always done and be shocked that you can no longer see something. You may go for a check-up and be told you have lost several more degrees than you had expected.
Some of the most difficult times can be when you reach important life stages or big decisions such as pursuing a relationship, starting a family, changing jobs or buying a house. These times were always incredibly stressful for me as I felt the added weight, complication and uncertainty of my vision loss.
Yet, it has all turned out ok so far.
In my 20s I was terrified of losing my friends or not finding anyone to love me. In my 30s I struggled with the decision of whether I wanted to have children, and if I did, I wondered if it was ethical? I worried about my career and what my future earning capacity would be like. Could I manage a mortgage if I was blind?
These are all big things for anyone to deal with and in hindsight I wished I had been more open and talked about them. Instead I struggled through several bouts of depression feeling totally isolated and hopeless.
Sunny side of the street
In those dark moments I couldn’t even begin to imagine the life I have now. I didn’t think it was ever going to be possible. I am now in my 40’s with a wonderful life partner, supportive family and incredible network of friends. I am university educated, well-travelled and gainfully employed.
It has taken me a very long time to acknowledge that things are better and more manageable if I put my pride and shame aside and ask for help. It hasn’t meant trading my independence, rather just accepting that there is often more than one way to do something.
Over the years I have learned to adapt and cope through discovering things I enjoyed doing. I love music and so took up partner dancing for fun. I learned to use touch and musicality to be a better follower. While some of my partners still cop a few elbows to the face, I am certainly getting better.
Tickle my funny bone
I have often travelled places by myself which is a significant challenge, a great accomplishment and lends itself to a few funny stories. Like the time I stepped off the edge of the Inca trail in Macchu Picchu, fell off the stage dancing burlesque in London, got on the wrong bus in Mexico, got lost in a blizzard in Nepal and hugged strangers thinking they were my relatives. I try to keep a sense of humour about my life and experiences and it has become my way of surviving.
Another strategy was working hard to develop a good social network and learn how to talk about the challenges. My friends have been my saviours, and despite my fears none have dumped me for being a drag.
Some years ago, I was lucky enough to be one of Australia’s Youth Ambassadors and attended the Retina International Congress in Germany. I met young people from all over the world and we looked at ways to support others just like us. Sharing stories, connecting and being inspired by what other people are doing literally changed my life.
While being handed the diagnosis of eventual blindness can feel like Armageddon sometimes, it generally isn’t. The world is full of burgeoning technology, advances in science, incredible opportunities and adventures to be a part of. Sure, it will be difficult and frustrating at times. But you can get through it, and live the most fulfilling life you can imagine.
My top tips for managing vision loss
Laugh. At yourself. At life. Find the humour and use it as a shield on those days that are tough.