Category Archives: low vision

Electric Books

Oh, my word!

Words create. Grouped together they form ideas, clarify concepts and uncover emotions. They can be breaking or healing, creating or destroying. Words, like single. little bristles on a hand crafted paintbrush, gather together in choreographed groups to curve, colour and create images that appear uniquely in every reader’s mind. Being able to see them, read them aloud, digest them and allow us to continuously form new thoughts, and so,‘in my book’ (excuse the pun) are a basic human right.

Recently my son drove me to the local library to pick up an audio book from the rather limited selection. AS we walked in I was overcome by the nostalgic smell of old books – a blend of dust, leather and tobacco…with a faint whiff of old style floor polish. It instantly raised the memory of my grandfathers study. I sniffed the air and reminisced aloud. He too, was yanked into memory lane by the smell of the pages, mindful of the joy of choosing childhood favourites that opened new worlds of adventures.

Tables of old library books filled the foyer and people of all ages, shapes and sizes were scanning through the treasures in search of those classic gems.

Acrid jealousy hung in my nostrils as I grieved the loss of being able to read a book. The fleeting emotion of self pity wafted over my heart with the loneliness of not being able to join this assortment of people enjoying the hunt.

Then I took my thoughts in hand shooed them towards thankfulness. It is a privilege to live in thees modern times where technology gives me access to electric books.

My cell phone does not quite have the same memory jolting scent (yet) but I do , with some double – tapping and poking around, get to listen some great books. Scan reader apps, and a little more effort, also allow me access to ordinary books and, for those with the privilege, there are some excellent audio libraries online.

My recent introduction to artificial intelligence, gives me much hope that the advance of technology will once again allow us blindies to put our noses back into old style books.

…and that’s not my last word on it.

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Following clothes

This morning I walked from a bright, sunny quadrangle into a shadowy corridor that leads down a ramp, through a doorway, into a foyer. It takes a long time for my eyes to adjust to the change in light, but today was my lucky day. Two precious people were walking ahead of me and one was wearing a black and white striped skirt, a perfectly elegant landmark unknowingly escorting me through the narrow doorway.  

I did say thank you and, since I know her quite well, joked about the usefulness of  the vertical pedestrian crossing! We laughed together about the odd behavior required by people with confusing vision. It only then dawned on me that I have something to write about: the usefulness of following bright clothing, bags, prams, rolling suitcases and the like. 

Public spaces , and public transport, are often very difficult to navigate… without the public. Insufficient colour contrasts, lack of decor landmarks and complicated signage often make moving about alone quite trying.

Thank God for people.

Sunshine Surprise

It was a cold, crisp Friday morning as I pulled on my gloves and headed down our sunny driveway to start my day. I had a spring in my step as I headed into the sunrise with all the joys of a new day playing hopefully in my minds eye. Our complex was peaceful and I presumed all residents were out an about, so the “hello” from the shadow bumped me right off my rails. I let out a whoop, quickly followed by a laugh and I think my neighbour got a bigger fright than I did.

Oh, the joys of low vision and not being able to see anything in a shadow!

We both recovered with friendly apologies and explanations…and now he knows that my mobility cane is not just an optional accessory.

Low vision awareness, happena one awkward moment at a time.

Tongue in cheek and other mishaps

So one of the ways us ‘blindies’ get to manage tasks that require sight, is to use our tongues. As you and any damaged dental feature would know, tongues are independently intelligent, super curious seekers of adventure that can identify little ridges, gaps, holes and glitches. So, when my iPad is not at hand and my fingers are not managing to identify intricate detail, I give the task over to my tongue. It helps me find matching earrings, the eye of a needle, the type of screw or the hole in a bead.

So today I needed Andre to help me buy placing a blob of quick- drying Superglue on a little bracket to keep it in place. He put on his reading glasses (yes, we are that age) to do the job. The glue was not coming out, so I took the bottle out of his hand, put it in my mouth to feel the clogged spout and proceeded to bite off the plug of dried glue. As I pulled the bottle away I felt the glue on the tip of my tongue, the inside of my bottom lip and the back of my teeth. In terror of these all sticking together forever I bared my teeth and stuck out my tongue like a shrieking gargoyle until it all dried separately – not a pretty sight!

For future reference, the glue came off my tongue easily, it took about 5 minutes to wriggle the matting out of the inside of my lip (with a layer of skin), I eventually flossed some of the dried bits out of the gaps between my teeth and there is still glue on my fingers as I type.

I posted my mishap on a chat with other visually impaired friends thinking I was a bit weird. Well, one of the guys reads his credit card number with his tongue, others test batteries (shocking), read embossing on glass bottles, identify coins (after washing) and find reset buttons on watches and modems.

I know there is a Biblical reference about taming the tongue, but I am heading for training mine … to taste AND see!

Refreshing journey – cane, lines and ‘le-man aid’.

Yes, a play on words of my favourite cocktail from my miscreant youth. Now it is my favourite way to get around – use my white cane, line up with fellow commuters and depend on le – man aid, help from strangers, so I can go wherever I feel like it …ON MY OWN.

As many of you LOVIS (low vision sufferers) will know, it is wonderful to have family and friend support for … just about everything, but I love to give my concerned others a break at times and get to live a little on the edge. Being a bit of an adrenalin junkie, I get buoyed by the adventure of putting myself at the mercy of strangers and depending on the kindness which I believe is in the heart of everyone. Yes, I may bump into a serial criminal – who I believe is just a very hurt human, who never got a safe enough environment to help them through their pain – and, yes, I admit, I do pray and ask the Lord of Life to protect and guide me. My family know, and joke about, my designated ‘guardian traffic angel’ to protect me from being run over and they occasionally ask me if I can put in a quick request for these services to be rendered to them to get a break in the traffic!

Background

I come from a privileged upbringing where owning a private vehicle is a necessity and public transport from the northern suburbs of Cape Town can be seen as a daunting unfamiliar mission.

The story – One day to UCT for one meeting.

My husband dropped me off at the Golden Arrow bus stop early in the morning. I met my first travel buddy in the line. She had the incorrect small change and knew that the driver could not break a R200 so early in the morning, so I got to add in the couple of rands to get her ticket. It started a great conversation about ‘paying it forward’ (a must-see movie classic). She also told me she was getting off at the place I wanted to go. She told me the driver stops between official stops to let her out. What are the chances that that was exactly near the staircase I wanted to use to head to the MyCiti bus-station.

I always use my white cane when I am on my own. Physically I could survive without it, but the stress of trying to figure out where to go or who I may literally bump into, and the embarrassment of looking like an idiot – like when I walked boldly towards a door that had a big ‘use next entrance’ sign on it and I wondered why the handle didn’t work – as I shoved an pulled at it. My cane gives me permission to do weird stuff, it drastically reduces my stress, gives me permission to ask for help, without giving long explanations, and is a kindness I afford myself.

I got off at the un-stop and joined the throng of pedestrians streaming headlong into the bowels of the bus station like ants into an underground ant-nest. I knew where there were machines for checking how much money was on my card, but I knew I didn’t know how to work them. I just joined the line and then, close to the front of the queue, I asked the person behind me (travel buddy 2) if they could help. He was a friendly Nigerian student on his way to college. He showed me how the card readers worked and told me it didn’t matter which way up the card was … another relief as I needed to use the card at every entrance and exit point.

In the bus station, the marshal told me where to go. The paving guides in the MyCiti Terminus are up to international standards and so I was easily able to get to the right platform using my stick in the rutted grooves and my feet on the stipples. I do wish, however, that there were more color contrasts, or even color coding, to clarify the functional areas. When I began to look a bit lost, as I could not see the platform number, a little girl and her brother (travel buddies 3 and 4) asked if they could help. They confirmed that I was on the right platform, but many busses used it. They would not leave me by myself, so I let them take me past the line of people to the official usher at the gate. I waited with her and she made sure I got onto the right bus.

As we bumped along somewhere near District Six I asked the lady next to me (travel buddy 5) where exactly we were. She announced, “Coronationville” and we got chatting. She was a domestic worker who was so grateful for her work and the family who she obviously loved like her own. She proudly told me all about ‘her’ children and how wonderfully they were doing. She had so much gratitude and satisfaction in her heart that she literally bubbled hope.

I hopped off the bus at the Cape Town society for the blind as it was the closest bus stop to the university (for non-students). After a cup of coffee and checking emails, I took an Uber to the campus. The driver was very protective and was reluctant to let me go (travel buddy 6) on my own, until I showed him the Lazarillo App that told me exactly where I was and what the names of the buildings were.

After a couple more meetings and greetings with helpful people, biddies 7 and 8, I got to my appointment. Interestingly, on that floor of the building the corridors were an off-white color and all the doors were painted green … very low vision friendly, yay! So when someone told me that the loo was the first door on the right, I felt comfortable that I could find it on my own. Actually, it was not the toilet. The loo was the only door not painted a color … camouflaged in-house out house!

After our TEDI meeting (google it) I hitched a lift with a colleague (not a stranger, so I can’t add a buddy number) to the busy Main Road and hopped out onto the pavement. After gathering my wits I held my index finger down in the signal for a minibus taxi. Well, the taxi stopped in the middle lane of traffic, the jockey got out, stopped the vehicles in the closest lane and came and fetched me by the hand to climb into the already full minibus. I told him where I wanted to get out so, about 10 minutes later, when we were driving in the right-hand lane, he spoke to the driver who then veered across 2 lanes of traffic and stopped to let me out. Once again, I was not left alone. The jockey (who deserves to be travel buddy 9) simultaneously stopped the oncoming traffic at a green light, grabbed a nearby unsuspecting pedestrian by the arm and told the guy to, “take this lady across the road”. He acted with so much cheek, daring and caring, that we were all laughing! The accosted Indian man who helped me across the road (travel buddy 10) happened to be going in the same direction to Cape Town Society for the Blind. So, whilst we negotiated the patch-work of pavements, potholes and driveways all the way to CTSB, we chatted about cane woven lampshades and about having things in our homes that have meaning. It was a delightful few minutes that left me feeling refreshed.

I had an hour to waste as the first Golden Arrow bus out of CT to Durbanville leaves the city at 3. So, I settled down for a big lunch at Cafe 45. (For local readers, you can get a fantastic, reasonably priced lunch of the day at CTSB in Salt River Road, Woodstock)

Just after 2pm I waited at the MyCiti bus stop to head back into the CBD.I was a bit anxious because I did not know when the next bus was supposed to arrive. There was a toll-free transport number on the bus shelter, which I was able to see in a zoomed-in photograph on my cellphone, but that day all I got was, “sorry, the number you have dialed is not available right now”. I can’t hail a bus ‘cos I can’t distinguish between buses, trucks and large noisy vehicles…so I made a quick request for my traffic angel. A lady arrived shortly thereafter (travel buddy 11). We got chatting about how she had taken off early from work and was heading into town. She hailed the bus when it came, and I got safely onto it.

Back at the terminus, I walked over the bridge to catch the Golden Arrow bus home. Once again, a friendly passenger (travel buddy 12) happened to be taking the same bus back to the northern suburbs so I did not need to hold out my large print A5 sign with the word BUS and the destination, DURBANVILLE, on it, (which, although necessary at times, does make me feel a bit odd). After solving our country’s leadership crisis with her, we got onto the bus. It was so full, I couldn’t find a seat. I said aloud, “I don’t want to sit on anyone’, and then travel buddy, lucky number 13, said, “There is space to sit here” as she reached for my hand and led me to sit next to her. I got into a conversation with this young lady as she asked about my sight. We landed up talking about her struggles at work, and this time, I got to be someone’s le-man aid.

What a lovely day! I feel proud to be a South African. There were so many good-hearted people from all walks of life helping me out in their ‘on the way moments’ of their lives. I am just one person, on one journey, on one day and yet I feel like I got to see the kindness inside of many hearts.

It is a privilege to be blind enough to see this.

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.

    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