Some of my kind blogger friends have asked me about my eye conditions so that they may attempt to understand my perspective and how I take photos. I want to thank them and all of you for your patience in waiting for me to face the fear, determine my comfort zone, and write this post. I am sure there are more who have wanted to ask and perhaps thought I would be offended. I’m not offended when questions about my eyes are asked in a respectful manner. In fact, I embrace opportunities to foster greater comprehension among others. Because if you can perceive just a little of my challenges and my victories you will be that much more responsive next time you see a person who is blind or vision-impaired. If I can impart that knowledge to you and gift to them, then that makes me smile. I think it is always important to remember that anyone has a right to privacy and may not want to share all the details of their conditions. Sometimes I like to reserve that right too. So I hope you will respect that this post has not been the easiest for me to contemplate and treat it with sensitivity. Given the wonderful people I’ve interacted with so far, I am certain that you will. Thank you for nurturing this blog home.
Those who are vision-impaired themselves and reading this, have no doubt been subjected to the misunderstandings, curious but kind strangers, acts of consideration and unfortunately the cruel or ignorant comments. It is a sad fact that if you don’t fit a stereotype, some people will decide that you are somehow a “fake” or not as vision-impaired as you claim. Take a look at my eye test results and you will have no doubt of my vision loss. What will baffle you is how I cope so well.
I work hard to cope. I have many tricks that I have developed instinctively. I am a master memoriser of the layout of places that I frequent. I sleep deeply at night from tiredness in using all my mechanisms! It hurt me deeply when I was told in an unpleasant way that I cope too well and I must not really be legally blind. It helped me to accept my ability to cope when I found myself in a hilarious but powerful situation two years later. I stood in a circle with others with varied eye conditions. All of us were legally blind and we were laughing at the irony as we played hacky-sack. Friends, never underestimate human strength and courage. It is a beautiful thing. I don’t intend on changing my ways so that others can slot me into a category nice and easily upon one glance. It is with age and the resulting increase in comfort within oneself that I care less what others assume. Yes, I still care. Just less. Sometimes I fall off the bandwagon on a bad day and get very upset and must work through the emotions over several days. But overall I am getting better at shrugging off the assumptions and going about my life with joy. And a camera.
Oh how people are confused when you are identifiable as vision-impaired and then all of a sudden whip out your camera and start snapping away with great intent and purposeful creation! So, what eye conditions do I have? Well, in a nutshell…
Retinitis Pigmentosa (RP)
This was diagnosed over 10 years ago. I have not held a driver’s licence since then. I have extreme tunnel vision and night blindness. I am not rude when you put your hand out to shake mine and I don’t respond, I just haven’t seen it. Forgive the delay as I trace my eyes from your face to your shoulder, along your arm to your hand. Likewise, I am not ignoring you if I sit next to you or walk past you and know you. I love going to the movies and watching sport and a little trash TV on our large screen. Watch my eyes and you will see that I am busy scanning the screen constantly to take in the images as best I can. And speaking of the movies, you know that blindness you experience when you walk into a cinema from daylight? Eventually your eyes adjust to the darkness. Mine never adjust. That’s the “night” blindness which is not limited to nocturnal hours, but rather any dark situation.
Cystoid Macular Oedema (CME)
As reading became increasingly difficult in 2008, I began to suspect that something else was happening in my eyes. I was of course devastated to find that I’m one of a small percentage of those with RP who also get CME. I take medication for this condition to try keep it under control but the medication is a constant balance of treating the condition and managing the side effects. The condition’s symptom of blurriness in my remaining central vision seems like a cruel joke when your peripheral vision is already taken away. But I manage as best I can with reading books on an e-reader with the text enlarged and my computer screen enlarged.
Both are degenerative and no-one can predict how much more sight I will lose. Each year I notice things that are harder than they once were. Each year I make adjustments to my patterns, my environment, my routines in order to cope and indeed thrive. I also notice my growing need for consistency and predictability in my surroundings. I like to exercise in areas with clear paths and manicured gardens. I don’t like being in someone else’s kitchen and I like to be in a kitchen alone when cooking. It’s safer! I do things slower and more methodically. I love that when friends visit they casually dump their bags – it means that they don’t molly coddle me. But as I trip over those bags and shoes I find myself quietly moving their belongings to a different place. I do not want to impose strict rules but I do seek the comfort and freedom of more organised chaos!
Imagine your body is always prepared for fight or flight. That is what it is like for me as a legally blind person. My body is always tense to a certain degree, ready for the next thing I bump into or light flash that plays tricks on me. I need to do more yoga to release it all!
Throw in the annoyance of dry eye and short-sightedness and I’ve got the whole deal! But what will really deceive you, is my eyes. They look “normal” with just a bit of redness that varies with the environment and activity. Look closely and you will notice my pupils are smaller than yours during the day and much bigger than yours at night. I think I blink more than the average person but I will look you in the eye as I talk to you. I have good days, good environments and bad days, bad environments. Some days I’m strong and confident, others I need a helping hand a lot more and I’m fragile.
I seek out the beauty within that narrow field of vision. I accept that which I miss. I might miss the landscape expanse of rolling plains, the entire building, the funny face you pull to the side of me, the steak you steal off my plate to tease me (the cheeky smile gives it away every time husband!), the man who walked past and checked me out. But what I do see, what I seek, are those details, those intimate moments, those images that can be seen in my tunnel. I choose to take my vision as an already cropped photo in which I frame those things that make me happy, rather than lament those things I haven’t seen. What ugly fence in the foreground? If I’m not looking at it, I can’t see it. The camera gives me the gift of sharing my perspective. But it also allows me the novelty of temporary greater peripheral vision so that through the viewfinder I may discover something in my surrounds I may not have otherwise noticed. (I cannot see the whole frame of the viewfinder, I have trained myself to scan around the frame to compose my shot). The camera gives me the gift of communication through a medium I’m not expected to embrace. The love of capturing beauty finds me doing what I seem to do best: defy your expectations. Would you mind if I’m loud and proud to say that? It’s kind of what I’ve been doing all my life.
Most of all, my challenges have given me a chance to question what is important to me and to cultivate my perspective of life (oh the puns!). I honestly relish the small joys of life. Sure I’ve been given a rockier path, but along that path I’m planting luscious flowers, strong rooted trees and fresh nourishing surprises of herbs. And holding my hand when I need it are my husband, my mum, my friends, my step dad, my cherished ones and of course my dog. Well actually he’d rather we pause in our long walk to roll in the lush green grass off to one side of the path. That’s ok with me. Let’s both stick our noses in the air and get a whiff of that coffee wafting down from the nearby cafe too. And hear the sound of my husband laughing as we play. And the phone ringing with friends organising a movie date. And see the sun’s golden glow in the morning. And thank my lucky karma to be surrounded by some special people. And acknowledge my fears and keep on living happily anyway.
And take a photo to capture it all.
This photo I spotted while walking through Vancouver last year with my husband and dear family friend B. I really got the giggles when I saw this. I’m the one that spotted the sign first. When I hinted at something the boys went into “male refrigerator blindness” mode and couldn’t find what I was referring to. Ah the irony made me laugh harder.