Category Archives: hope

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!

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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.

    Design de-sign

    I love entering an environment that is so cleverly designed that you feel safe and clearly directed, as if an usher were guiding you. Colours, light and acoustics all play a role in how a foyer or room makes you feel. I am not sure if sighted folk are aware of the subtle influence or whether I have just become more cognisant of these elements as my sight has deteriorated.

    Recently I went to an exhibition of the final interior design students at the BHC building in Cape Town. Entering an unfamiliar building is always a bit stressful for me, especially on a bright, sunny day, as my eyes take a while to adjust to the new lighting leaving me totally blind for a few minutes – hence the white cane.

    On this day, the well lit entrance eased me into the foyer where I was greeted, not by a butler, but by a wide yellow walkway that immediately surprised me and filled me with joy…. maybe a yellow brick road association. The pathway (if that’s what you call it in an indoor setting) began wide and seemed to gather us up and then, it’s flowing lines swayed us towards the front desk. The colour even continued up the desk creating a sense that it was awaiting our greeting. In theme, it was in fact attended by a very sunny lady welcoming us to enjoy the exhibition. At first I couldn’t work out why I felt so safe in a new space . I love the folk I was with and was celebrating their daughter’s talent (who was named top student the following day….brag, brag), but I don’t think I have ever found an unknown space so low vision friendly. The design of the flooring actually guided us along unconsciously … clever, social engineering. I love it.

    This kind of design would be so useful for something like a customer service desk in large retail stores. Many people don’t read actual signs, but look for simple pictorial or visual cues to direct them. I love buildings where the tiles, doors and walls are an indication of where to go. Having only peripheral vision, I am very aware of this, especially in places where there are a lot of people moving in different directions … like auditoriums and bus stations. I feel less stressed when the way to a specific place is marked by the change in tiling or denoted by planter boxes or benches. Airports are my favourite (when they are designed well). Large groups of people form all languages and cultures use non-verbal clues as they find out where to go. I love it when there is a tastefully demarcated corridor from the disembarking shute to the conveyer belts where your luggage gets belched out and then the tiles lead you towards the exit.

    There is a particular part of a shopping centre in Cape Town that exhausts me, even on quiet days. The floor is so intricately patterned and the lights so busy, that I detour to avoid it completely. If I was a kid in that space I would play up and have a tantrum from sensory overload. My tolerance for shopping has short-circuited there twice. My family know about it so when we walk past there I just pull down my dark glasses from their almost-permanent perching place on my head, whip out my white cane and hold onto the nearest volunteer tricep until we get to a place where they can see the serenity of the clear line between the floor and the wall.

    I know that music and temperature subconsciously affect a person’s behavior, but until recently I had not noticed the impact of the visual cues.

    In these modern times I know there are certain standards for buildings being ‘accessible’ for persons with disability. There is wheelchair access, being the most important (cos you have to at least be able to get into the building), but I do think there is a lot more that can be tastefully done for making spaces more friendly for low vision folk. This would also include seniors and those with mental challenges who also like to get around as independently as possible.

    I really appreciate thoughtfully decorated public spaces that keep people moving in the right direction or waiting patiently with the least possible stress.

    Well done to the designers who have achieved this. Like the interiors, they are not just pretty facades, but clever subliminal experts.

    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.

     

    Love, disability` and a feline fur ball

    kittyI never used to like cats… but then I never had the experience of growing up with one. Dogs were easier for me as I am somewhat of a control freak, love to do things my way and loved training our ridge-back to enjoy doing  what I thought was necessary. Dogs love to obey and they cannot hide their joy of being in your presence

    Then I met Milly- a little stray kitty who was found on the streets of Langebaan where she had been terrorised by children… We think she was about 10 weeks old when my daughter got her and this little fur ball began to train me!

    She loved to be loved and cuddled and fussed over, but unlike a dog, she did not ask for the attention, she just received it as if we were privileged to give it. Stroking her little head ignited a guttural rumble of satisfaction and she revelled in the affection so lavishly bestowed on her.  I never saw such a creature so confidently assured that she was alive to be loved.

    One weekend after being out, we arrived home and she was not there to greet us. Eventually we found her on our blood covered bed. She had a huge gash on her hind leg and she hissed with pain when we tried to pick her up. Her back and hips were damaged and her tail was hanging limp. We think she may have been caught by a dog or in the motorised garage door…

    To cut a long story short, she had layers of stitches in her leg and was put on medication for a sub located vertebra. We were not sure if the injury would ever heal. She spent the next two weeks hiding under the bed or in my hubby’s cupboard, too sore to come out and very reticent of people.  She still responded to gentle touch and as I lay on the floor talking soothingly to her, she purred like a massy Ferguson tractor.

    As a person with a disability, I learned two things. Both of these lessons touched a deep nerve in me and tested what I thought about my life.

    1             Our cat was loveable just because she was alive. If she had ended up being disabled, but still able to receive love then her life was still valuable. I am valuable just because I am alive and able to receive and respond to love.
    2              It was not her owners fault; no loving pet owner would ever hurt their cat to teach them a lesson. My disability is not the fault of a loving creator – either he does not love or I have a warped belief system. (More about that journey later) Life is full of troubles, but we have been given the spirit to choose how we walk through them.

    I was challenged about my thinking about myself and value and love. In short, I was edu-CAT-ed by an injured kitty!

     

     

     

    An angel a day

    photo-1459179214099-4bb3cc48e6c3This morning I woke up to another ordinary day. How boring.  I decided to live it with my eyes wide open looking for a new hope, a new person to meet or something ordinary to see in a new way so that it could be an extraordinary day with something interesting to remember in it.

     I took the taxi to Durbanville village as it is more than half way to the aqua aerobics class. At 8 am the taxi rank was a buzz and we all poured out of the vehicles escaping the confines of our stuffy tin cans, flooding the streets with bustling bodies heading in different directions. As I was negotiating the shadows and steps that led onto the sidewalk, a lady wearing a white blouse and navy slacks walked slowly ahead of me. I decided to follow her as she was walking my pace and it is easy to follow a monochrome top.  She saw my white cane and asked if I was okay. I greeted her, noticed the scrubs and asked if she was in the medical field. She is an assistant in a local pharmacy and we worked out we were heading in the same direction. We spent 5 minutes walking and talking together, and she didn’t mind me holding onto her shoulder as we crossed various roads and driveways. What a joy to meet such a positive, beautiful lady. I pray every time I travel on public transport, asking God to designate a ‘traffic angel’ for me. She was it. We parted near the gym and so, by 8.20 am, this could no longer be called ‘just another day’.