When people learn that I am vision impaired, more often than not I am greeted with one of two responses. The first is "It's hard to believe there is anything wrong with you. You look so normal". And the second is "Oh! You poor thing!"
People probably mean well, however I find both statements really annoying. There's this urge to ask how I'm supposed to look. And I just cringe at the thought that just because my journey is different, I'm considered "a poor thing".
You see, I have an unseen disability. A disease called retinitis pigmentosa (RP) is robbing me of my sight. Currently I have a very small amount of blurred central vision and little to no peripheral or side vision.
Life is always challenging. Anything an inch away from my central vision is non-existent. That is, unless I'm looking directly at it through that very small gap called my remaining vision. Most times I have to scan with that very small gap or search with my hands to find anything.
I'm also learning to see with my ears. Recognising people by their voice is becoming easier. As are computer programs that read to me.
I have many psychological helpers. I find one hundred per cent concentration assists me in all that I do. A good memory is also essential. Determination is important. And because there can be a lot of frustration, patience is always a virtue. Balance in life is crucial and the ability to relax, vital. There's also lots of intuition and guess work.
Anger, frustration and fear
I didn't always have such a good attitude. At the beginning of my vision loss I was angry and frustrated. There were so many life changes that needed to be made. It was about letting go of the old to adapt and adjust to the new. Stepping into unknown territory is never easy.
Fear became a constant companion. How would I cope with learning to do things differently? What would people say? Would they believe my challenges? How would I be treated when I was no longer able to carry out previous roles? Or for that matter to say no to requests I could no longer cope with? And it was heart-breaking when all my fears became reality.
Counselling and moving forward
It took several years of counselling to get me back on track. There were many underlying issues causing lots of barriers. I had to learn to take control of my life and put my own needs first. I also had to train myself out of worrying about what others thought. Counselling also helped rebuild my self-esteem and confidence. I learned there is nothing constructive about beating yourself up because you don't see well.
Eventually, I was able to move forward. Accepting my disability as part of the me that is me became a priority. Retaining as much independence as possible became another.
Many thought I was selfish, but I saw it as the other way around. The more independence I could retain emotionally, physically and financially, the less dependent I would become on others.
I've also learned to be super organised. And almost everything I do, from deciding what to wear to catching public transport, is carefully and strategically pre-arranged with plans A, B and C.
The alternatives to seeing always take a great deal of time and effort; however, I'm happy with my achievements. Finding ways to adapt, adjust and accept my condition has certainly enriched my life. I've become more confident and more satisfied than I have ever been. Plus, my experiences opened my eyes to a new understanding of the challenges of others with disabilities.
No doubt, I will also eventually learn how to deal with responses indicating I'm abnormal or poor, just because my journey is different.