Tag Archives: vision loss

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.

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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.

 

Love, loss and Levi jeans

jeans

There is nothing more relaxing and calming than putting on your comfiest jeans. They are usually the oldest and softest, bearing rips, patches, paint and other scars that hold memories and reminders that life is an adventurous journey. They are best worn with slippers and accompanied by a good book and a warm drink. We seldom wear these in public, especially if we are meeting people   for the first time. First impressions are important, but are only a glimpse of a person’s whole life journey. They can be misleading at times. So, my spaghetti brain (every thought touches every other thought) related this to how relaxing it is to be with people who don’t appear perfect.  Perfection has its place in the beauty of music, fashion, sports and mathematics, but it is a bit unhelpful in relationships.  This got me thinking about the strength of being real with our weaknesses.

“My power is made perfect in your weakness”- God himself.

Just as love conquers strife and forgiveness is sweeter than revenge, so is vulnerability a key to strength.
I have learned that being open with my weaknesses allows an opportunity for others to feel strong and, asking for appropriate help empowers me. No matter how hard, I tried to be independent; it was only when I admitted my need for help and got the skills to cope with my vision struggles, than I found real independence. Thanks to the professionals, at Helen Keller Low vision services, I got the freedom to move around independently even on public transport.

Asking for help takes courage as it can seem that we have failed. I know that family members can feel frustrated when they see us struggling, as they know that if we just asked for help then everyone is happier. I get that we need to be determined and persevering, but, if we don’t acknowledge our weakness, the frustration can easily become anger (at ourselves) or even aggression. Asking for help is not a failure. Being honest with our pain is helpful for everyone.

It cannot be easy to live with a person who appears to have ‘no need for help –no weaknesses‘. Hats off to all friends and relations of super- strong, perfect people. If a person is so independent and self –sufficient, without a gap, then how do you love them?  Softness can triumph over perfection as it opens an opportunity to value others and transact with humility, kindness and appreciation.

In the process of embracing my blips and blemishes and it is no easy process (especially for an A type personality), I have become less stressed and, in a way, more able. I am more comfortable in the worn jeans of my inability which opens up opportunity to ask for help and make someone else feel trusted and valuable. It’s a bit like letting an acquaintance come into your house through the back door and asking them to turn the kettle on. It makes them feel like family.

chair 2

For me, old jeans are an allegory of a life of loss, laughter and love… far more satisfying than clean-cut lines of pristine perfection. I love them so much that I restored an old wing back chair with the family’s old jeans and it is my favourite place to sit with a cup of tea, snuggled by the life journeys of my loved ones …and the scratchings of our naughty kitty!

‘Let the weak say I am strong’

(Thanks to Botha and Budler editors)

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’.

Silly Siri and other short-sighted sniggers

oopsSiri me
As many of you know, I can see very little detail and so I find Siri (the personal voice assistant on my iPhone) very useful….most of the time. A few weeks ago I was involved in helping organise an event management workshop.  As a colleague pointed out, the chairman of the organisation definitely needed the event management skills on offer as the biggest event of his life happened unexpectedly… three weeks early – the birth of his first child.
As a result, I had a bit more responsibility than expected and promised to take a photo of the delegates alongside the banner of Retina South Africa.  After lunch my helpful, fully sighted husband took the pic on my phone – which was also a fun event … Have you ever tried to get a handful of us blind people looking at the camera at the same time? Have you ever seen a photographer trying to clap his hands and hold a camera still?  Anyhow, the required task was finally completed.  As the session began I quickly wanted to forward the picture to ‘the boss’. I asked Siri to put in a caption saying, “The Essential Event Management Workshop”. I pushed Send and then peered through my magnifying glass to see that all was in order. In distress, I shrieked aloud, interrupting the speaker who was just getting underway, and I read, “the sensual event management workshop. The place erupted as I quickly sent a voice WhatsApp saying,” Essential, essential, e-s-s-e-n-t-i-a-l”.
Siri nearly got me into Siri-ous trouble.!

P.S. congratulations to Manny and Shamiela on the birth of their little girl Aarya

Mistaken identity
The coldest weekend this winter coincided with a burst geyser and an extra family member in the house. We were all using one bathroom and all our hygiene products had gathered in a line along the basin edge like spectators, to watch the high speed water sport. . I reached for my face scrub in the blue and white bottle and felt the luxury of a thick cream on my cheeks. The lotion smelled unusual. After the chilly commotion I took the tube to inspect the contents under my reading camera… it was heel balm!

Wakey, wakey
Half asleep I staggered to the kitchen to make the early morning coffee. I placed the mugs on the counter and spooned granules into the first one… except that it was upside down and the coffee sprinkled all over my slippers and the floor. Is that why they call it ‘in-stand coffee?’

A separate joke
Albeit weak, I need to share my home– made joke that birthed itself out of my home-made yoghurt gone wrong.

What did the cheese say to the curd?
“No Whey!”