Category Archives: Living with blindness

How we see it

  • My latest read (which for me means : my latest listen) is a new York Times bestseller by Rachel Hollis called Girl wash your face. I did not picked it our from an exclusive bookstore because of my intense need for ‘self -help’, but because it is free on Overdrive if you are a member of the South African Library for the Blind. I find nothing more relaxing than a well narrated story, whatever it is about.. I was merrily listening along to her insights whilst cooking supper when I heard her say something to this affect, “Whilst you are not in control of what life throws at you, you are in control of your fight. The traumatic stuff that happened to you in your life may not be your fault, but it is in your power to take responsibility for it.”

    I found this so empowering. Yay finally someone gave me permission to be in control…not of what happens, but of how I am going to let it affect me, grow me and shape me!I started to mill over how this statement could be helpful in forming my thoughts about inherited diseases and, my favourite blog topic, living with ongoing loss. We have all had things go wrong in our lives. Life is unfair. (I don’t know who made us think it shouldn’t be). You are not in control of what happens. It is being done to you and, surely someone is to blame? IT’s not fair!!

    The controller

    For many years, my way of dealing with sight loss was to do something to be in control. I thought that by controlling the world around me, that I would feel in control … through leading, achieving, competing, inspiring, … all of which can be good things, but the motive was to cover my pain, to dress up my fears in a brave armour of capability. Praise for the armour straightened the divide between my shriveled, terrified inside ‘me’ and the brave, fearless exterior ‘me’. Eventually the pack of cards has to come down and it is usually the family that get the cards flung into their worlds… so they will then makeup their own little lies about themselves to be able to cope – ‘oh, my pain can’t be as bad as mommy’s’, ‘at least I am not losing my sight’ and, ‘I should be so grateful I didn’t get breast cancer’. What a wonderful way to fiddle with the pain-meter so that you underplay your real feelings and put a little misbelief in there – what pain? Be careful , this thing could explode!

    What I actually needed to control was my response to loss – to change the way I see it.

    So often we compare our ‘wounds’ and either think, “well it’s not as bad as what happened to Jill” or, “what I went through is much worse than Jack so no one would understand me”.

    My wise (give a little space for humanity) and patient husband is involved in helping people break shame off their lives. He has an annoyingly accurate phrase, ‘it is not fair to compare’. He has observed that one person may have experienced extremely violent abuse and another may have remembered a scary boy at school look at them weirdly, but both will pick up pain and make an ‘untruth’ in their brains to help them make this ok. Well, who is in charge of the pain-meter? Who do we blame for it’s existence? Who exaggerates or underplays the calibration?

    Only I can change me

    Another brain smacker form Rachels book – went something like this,”What if you changed your thinking about what happened to you, to the idea that this has happed for you?”

    Buzz, hmm, huh, clink, wha?

    If Stargardts disease happened for me, then maybe my purpose in life can only be fulfilled if I have low vision. Maybe this degenerative disease is the exact catalyst I have needed to press me into a way of seeing that can open up other ways to perceive life and relationships and culture? It has inspired me to search for understanding how a Loving Creator and a genetic mutation can live in harmony. (Article coming soon). This disability enables me to taste wine and identify the butter creaminess, it equips me to hear the level of the liquid being poured into my cup or be aware of the atmosphere in a room.

    I find it so refreshing to have my thinking challenged. The problem is, I cannot do this alone. It is only by allowing other people’s ideas into my current thoughts, letting these ideas make me a little uncomfortable, that I can bounce them around in my head looking for existing points of reference, experience and beliefs and then choosing whether to allow the change or spurn it outright. When these thoughts have existed for years as plasters over a childhood pain, it is particularly unnerving. It is so interesting how we play games with ourselves without even knowing it. I so want to catch myself out! An old saying, ‘the heart is deceitful above all things’ is a wise word. If you think it is-not, you may have fallen prey to its tactics. Anyway, I have a suspicious feeling that my so called ‘heart’ is actually hiding between my ears.

    So today I decided to pull the rip-chord on free falling anxious thoughts and adjust my own pain-meter by just being grateful, present and mindful of my immediate surroundings – to enjoy the blurry view from where I am today! I opened myself to all the things I can be grateful for …the high pitched zing of my desktop magnifier, the smell of washing liquid on my clothes, the purr of traffic far away, the feeling of the carpet under my bare feet. I am in control of my response to my thoughts right now.

    What choice is fully in your court today? Who are you allowing to adjust your pain-meter today?

    P.S. Thanks to Rachel Hollis for her honest and inspiring book and thanks to SALB for adding this to the latest catalogue.

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    Pad Perch launch

    After a year of designing, redesigning, economising, getting intellectual property design applications and trademark, sweating over numbers, predicting volumes, avoiding throwing up, throwing in, throwing out ….I finally have a product to help people, like me, with low vision to use their smart phones, and iPads as a desktop magnifier or OCR scanner-reader.

    For a fraction of the price of a smart device, this hand made, low cost stand allows you hands free options for viewing, Skyping, reading whist holding books or documents in place and even drawing, colouring in and embroidering.

    Because it is gravity dependent with no clamps you can use it on a desk, a counter, a workbench, in the kitchen, in the garden, on the floor and even in bed.

    It is just a Perch, so don’t leave your device to it’s own devices… it may fly off … and then you will be the one in a flap!

    Perfect for use with KNFB reader, ‘Envision Ai’ or ‘Seeing ai’ and other text or image recognition Apps.

    You are welcome to buy one for yourself, or for someone else as a gift or donate one to a low vision sufferer. In the process you will be giving someone a job and opening the eyes of the blind.

    Current price, excluding postage is R380 (South Africa).

    To order, send an email entitled ORDER to cell2seeorders@gmail.com with your name and postal address. We’ll send you an invoice and banking details to get the Ball rolling.

    Check out more on the ‘in progress’ cell2see Facebook page.

    Eye deal iPhone

    Looking is not really my strong point (understatement), but looking for simple solutions is.

    Problem: Really bad eyesight

    Solution: iPhone

    Yes, the solution for-needing an electronic magnifier, was literally under my nose…almost on my nose!! Such is the posture that shortsightedness dictates. My iPhone had been merrily freeloading in my handbag like a lazy stowaway, until I discovered how brilliantly it can work … for a living.

    Now It works 15 hours a day, on minimum wage, and it is everything from a personal assistant, a talking watch, cab caller, story reader and an electronic magnifier. It is very polite and never complains. Paired with a bluetooth keyboard, it is also a word processor with built in, free screen reading software.

    It requires patience to learn how to handle this versatile creature, but the rewards of a mutually beneficial relationship outweighs the inevitable frustrations of a green apple ….user.

    Just one byte 😉 and you will be hooked.

    ….and live ‘appily’ ever after.

    Check out my first video and share with friends and family with really bad eyesight

    https://youtu.be/FFHbBpOcdvg

    Cane and able

    Cane and able … not the story of the original rival siblings, but one also involving pride and internal conflict.

    I recently had an unexpected trip to Johannesburg. There was little time to prepare during a busy day and , it was only when my husband and I were standing still on the ‘skellylators’ (our family word for escalators) that I began to think about this trip – body still and mind begins to move.

    I realised that I was traveling alone. No securing husband, just me and my faithful, rather battered white cane.

    Usually, when I go on a solo adventure, I mentally visualise the places I am going to and the colors of shops, the landmarks and the likely course of action. This time I was just there unexpectedly and had to ‘go with the flow’. When I feel vulnerable I make an effort to embrace my weakness and know that I am never alone. God is with me always. That morning I read from an ancient letter, “Let your gentleness be evident to all, for the Lord is near you …and the peace that passes all understanding will guard your heart and mind” . Boy I needed that peace, so decided to just be gentle and ask whoever I met whenever I needed it.

    I checked in online, but went to the counter anyway to find out which gate I needed to find for boarding. the lady asked if I needed assistance and I automatically said, “no”. The thought of sitting in a wheelchair when my legs are perfectly healthy seemed like a false pretense. (Will think more about this for the future). I also enjoy the adrenalin rush of finding my own way.

    I would never travel without my mobility cane. Whilst it is a symbol of blindness and someone needing help (why din’t I get the assistance offered?) , it frees me to do stupid things and to ask stupid questions like, “ is this gate 7?” Whilst standing under a bright blue number I also get into unexpected conversations with interesting people I would otherwise never meet.

    I became very aware of the surroundings for future reference. For example, in the SA airports the bathroom signs are round and bright yellow. I still can’t see which one is for who (although our law allows you to choose your gender anyway) and could not distinguish the disability one. My cane gave me permission to ask for directions to the disabled loo. Some folk falter before answering, thinking that this is only for wheelchairs (I had this conversation in the queue with the girl who had directed me earlier) , but can you imagine being in a large noisy bathroom with sounds of hand dryers, flushing loos and intercom announcements and trying to hear which door has opened and which cubicle is free. The disabled loo – which is probably very able (unless it is blocked) – is either free or not . A much simpler option for the vision impaired.

    When joining a queue for boarding I looked for the brightest bag or shirt and tucked myself in behind that person. As long as they kept moving in the direction I needed to go, I was fine. At one stage the blue bag that I was following had to veer left to board through the front door of the plane and I had to veer right to board from the rear door. I walked slowly until I spotted another colourful blob to follow. (I think he was quite amused when I asked him if I could follow his bright shirt.)

    There might come a day when it becomes too stressful to follow moving blobs and blurs of landmarks, but until then… my cane makes me able.

    Weather to see or not

    Yes, I know that whether is spelt wrong, but that’s what I want to talk about – how the weather affects our vision.

    I love the excitement in the air around the changing of seasons. I am now woken by the cacophony of twittering birds preparing for the winter rather than by the sharp summer sunlight piercing through the cracks in the curtains. I find the gentler light more peaceful on the eyes and more peaceful to the soul. The overcast days of autumn allow me to see better than the few cloudy days in summer which seem to refract the light increasing the glare. Even people with good eyesight may notice how their vision is affected by the weather.

    This morning the sky was filled with rows of cotton-puff clouds, as if a giant aero-plough had tilled the sky ready for planting . I dropped all plans of daily routine in exchange for a walk in the crisp morning air. I coaxed my friend away from her chores to join in the early beauty of this mild day. As usual my sunglasses were perched on my head (their usual place during most waking moments of my life) and that is where they stayed for the entire walk.

    Everyone’s eyes are sensitive to different lighting. Some people need more light to see better and others need less. Some people see better in morning light and others see better in the evening glow. Have you ever wondered what natural lighting your eyes prefer?

    I had never thought about safety and glare until I went out glasses -free on a misty morning which turned into a clear bright day. I spent most of the time with one eye closed and the other one nervously peeping through as many eyelashes as I could knit together – needless to say, not very safe for moving about.

    I find that dying my very blond lashes darker also helps slightly with the glare. I am not sure if any of the guys would dare to try it.

    The surface of the ground also affects the amount of light radiating into our eyes. Sun reflecting off snow, water or desert sand can be really harsh compared with green fields and muddy footpaths.

    So, come rain or shine, whether you can see well or not, may your eyes never need to weather the weather.

    Finger licking not so good.

    Having hands is a wonderful privilege. To be able to feel and touch and hold and twist.

    Our fingers can interpret texture, temperature and substance … and that is why, when you reach out to touch one thing and it happens to be something else which you do not expect, it can make you ‘gril’
    (no single English word for this )- shocking shiver and shriek. For those who have good eyesight I am sure you have eaten a fruit whilst distracted by watching TV only to taste that you have bitten into something rotten. As you peer down and see half a worm you probably reacted beyond the scale of reason and have this firmly etched in your memory.

    Recently I have glimpsed shapes, thinking that they are one thing , only to reach out and touch it and realise how wrong my interpretation was. Whilst cooking dinner, I rinsed off my hands (not literally) and flapped the dripping digits over the sink while I scanned the counter for the dish towel – it is seldom where it should be. I spotted a crumpled white object that seemed to have straight edges and so lunged for the prize, only to plant my hand firmly in the butter which stood boldly exposed in the silver foil. Yuk! A few days later I was putting lids back onto bottles of pickles, dressing and mustard. I reached for the small pale lid and slid my fingers into a splodge of mayonnaise.

    Someone with worse vision than mine once joked,” don’t worry, you’ll get a feel for it”. Well, my favourite worst place to feel stuff is in the fruit and veggie market. My fingers are destined to plunge into the frot spot on any aging product. It seems like there is a magnetic attraction between my fingertips and the worms and wounds of any soft centred food. When I unexpectedly hit the spot my whole body shakes and weird noises escape my lips. It must look really funny if replayed on a security camera.

    Getting a ‘hole in one’ is fantastic for a golf handicap , but it makes fun of my handicap on other types of greens…of course!

    Acknowledgment: Thank you Glynne for being my shopping chaperone.

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    I am going …what?

    I am going … what?

    It’s hard to fill in the blank in that statement, ‘I’m going …’. The shock of hearing that you have a degenerative eye disease is enough to make you think you are dreaming.  Thoughts waft through your semi- conscious brain saying, “This is not happening to me“; “this only happens to people I don’t know “ or “I will wake up tomorrow and find out it was just a bad dream”. That word ‘Blind’ is terrifying to a sighted person.  And so begins the first stage of grieving – denial.  I love denial. It is like having permission to live in the cuckoo land of unreality. It works so well … at least for a while.

    I was in denial for years as I pretended and found tricks and clever ways to disguise the fact that I couldn’t see well at all (understatement!), and I let the submerged fear out by running and running and running some more .  In our own time we all go through the grieving process as anger comes short on the heels of denial (thumbs up to all loved ones who stand by us through that!).This is generally followed by fits of bargaining with ourselves and God or both – a good time to take up a contact sport.

    I found myself faced with questions about the value of my life that no ten-year-old should have to ask.  Now that I think of it, no one did ask for blindness – that treacherous ocean between sight and no sight that all VIP’s (visually impaired people) are forced to navigate. You have no choice about being there and as much as people are with you, they cannot extract you from the reality. It can be a lonely and also selfish time. The currents of depression, disappointment and self-pity threaten to suck you under and pull you along paths you don’t want to go, but eventually the acceptance spits you out and you can finally take a deep breath of relief and joy as you recognise that you are still you and will always be you!  You realise that you are okay, and when you wipe the salt out of your eyes you see, or rather, hear a whole community of thriving survivors cheering you on and suddenly you know you are not alone and it is not a shame to get help… it is actually fun.

    Find something that makes you tick and get involved, whether it is using your talents for fundraising for cures, awareness for prevention of blindness, support groups, sports, writing or motivational speaking. Your life itself can be a motivation and an eye-opener to others. If you have a degenerative disease you will go through more grieving, but there are plenty of people and great organisations to help you thrive.

    Let’s do this together.