Tag Archives: perceptions and opinions

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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    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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    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’.