Tag Archives: vision loss

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.

 

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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!”

Change rooms

 

Two Blue Male Figures Lifting And Carrying Away A Tan Couch Whil

Yes, this can mean two things, the action or the place.
This story, kind of includes both meanings – the gym has change rooms and also they decided to change rooms.

I arrived as usual on the top floor of the gym and immediately realised that something was different. It sounded empty and echoed more than usual and the light from the north window, which is my normal landmark, was somehow brighter. I stood still for a while to just calm myself and was slightly annoyed that a change had caught me so off guard. . There were 2 young girls standing close by so I asked them if they could spot a gym instructor. Eventually a guy came to help me and I asked him to please introduce me to the changes.

Seeing my symbol cane, he reached for my wrist to lead me around. I enthusiastically thanked him for his assistance but realised that if I didn’t act quickly, I would be joyfully dragged about by the arm.  I said, “It would be more helpful for me to hold onto your arm and follow you. (Plus he was a gym instructor so the biceps gave a gorgeous grip :))

He was very helpful and I took note of the new position of the equipment stands and memorised the potential hazards. He was very apologetic about their being no mirrors in the stretch area. I insisted that it made no difference to me at all – I just glance at the papered wall and imagine a beautiful, slim young lady looking back at my nearly fifty, well built frame.  Perception can be a whole lot friendlier than actual vision!

With visual impairment, much of your sight  relies on the presumption that everything is in the same place as it was the last time you ‘saw ‘it .  A lot of vision is actually visualisation. For example, a round object above the centre of a doorway is likely to be a clock.
So if you have a family member who is losing vision, it is important to realise the stress of going to a new place or making changes without explain it before hand. Surprises are not generally that fun for a visually impaired person (Understated).

This seemingly insignificant incident reminded me how emotionally securing it is to go to the same place, via the same route so that you can visualize yourself in that environment. I have spent years trying to pretend that I can see perfectly, but it is not helpful in a world where the most constant element is change.

Note to self: keep things as constant as possible and when unexpected changes occur, swallow your pride and ASK FOR HELP … in the way that I need it!

Note to beloved family: the wooden spoons belong on the right hand side of the second drawer!

Sitting pretty on MyCiTi

Anything done for the first time is an adventure, so three weeks ago I arranged for a few of us ‘low vision buddies’ to go to the Waterfront on the MyCiTi bus. Armed with white canes, magnifiers and sunglasses we set off. We all have different eye conditions and 2 of us use symbol canes.  All VIPs, or Visually Impaired Persons.

You will be pleased to know that we had a fully sighted driver to get us to the bus station in Tableview. We stepped up onto the walkway betMy Citi adventureween the car park and the road, so that we could get safely to the pedestrian crossing, but when the motorists saw the white canes and this bunch of ‘blindies’, they slammed on breaks and waited for us to cross the road right there and then.  All three lanes were stopped for this spectacle, so we gratefully scurried across to the bus station. You would think I was carrying a magic wand… not a white cane! (Thank you to the observant motorists – even though they forced us to break the traffic rules!).

At the MyCiTi bus station the security Gard showed us which way to walk to the kiosk. The lady there was also very friendly and helpful as we armed ourselves with bus cards with the right amount of money to get us safely there and back.  I showed my cane–wielding friend how to use the channelled paving by putting the end into the groove and just letting it slide along in front of one.  I am not sure if this is how it is meant to be used, but miraculously, everyone gets out of the way, thus magically removing all mobile obstacles.

We went to the gate where passengers were queueing for the bus to the Waterfront, and once again we were accosted with unheeded kindness, and were, under no circumstances, allowed to queue at the back of the line.  (In some ways we enjoyed, and were grateful for, this unmerited favour, but also wanted to just  be treated as normal ‘ous’).

The bus ride was great, and each member in our little party was excited to be on-the–way anywhere, independently.  We stopped off at the terminus to let everyone ‘look’ around and orientate themselves.  One couple was particularly excited about being able to get to the Artscape theatre without having to even cross a street.  The marshals at the station seemed a bit concerned for us at first, but slowly got up to speed with our intentions, showing us the different gates, and even enthusiastically helping us locate  ‘the facilities’ (as they are so politely known to be in England). Eventually we hopped onto the next bus and headed for coffee at the Waterfront.  When the bus stops an audio tells you, “Doors open” … quite useful for the totally blind or fully inebriated. The location of each stop appears in big letters on an electronic screen at the front of the bus, but none of us could read it so we just asked out fellow passengers.  (I’m sure they could add a voice description if enough visually impaired folk used the bus).  As we approached Granger Bay I looked out the window and asked my friend, “Oh, is that the sea?” we all burst out laughing … I am obviously not used to traveling with other VIP’s.  I think some people thought we were crazy, but it was such fun adventuring together.

It was wonderful to see how many folk are using the bus, reducing traffic, and avoiding parking headaches. There is even a double cycle path along that route….. maybe not for the blind?

I would like to thank the MyCiTi bus service for their access, friendly world class service, and thank the public for their kindness and enthusiastic support. I also want to encourage all people with disabilities, or loss of ability, to get out and about. It is less scary than you think and we need to help the public to be less afraid of disability.