Category Archives: hope

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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    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’.

    iSight or iSee

    iSight or iSee

     

    isightI recently attended a mobility training course to learn how to get around more independently as a visually impaired person. It required that I learned how to use a mobility cane – an extra-long cane with a rotating golf ball at the tip (so you get extra notice when you are about to fall into a cover-stolen manhole) as opposed to a symbol cane, a shorter stick which merely reminds others that you are a person who has full permission to act slightly strangely at times (like using a magnifier to see a till slip or walking past a friend without greeting them).

    Shortly after this, a close friend of mine found an iPad that had been dropped in the street.  In her good citizen quest to find the owner she had to make a trip to the iStore in Canal walk. That day I was feeling down about a health issue, and was pondering on how precious life is.  So when the opportunity arose I grabbed the chance to get out, enjoy time with a friend, changed my plans and offered to go along for the drive.

    I took along my new cane and was excited to try out my fresh skills in an unfamiliar environment.   I felt really free just walking from the car into the building without putting strain on my always confusing vision.  We found the relevant shop and, bolstered by my new found confidence, I asked her if she was up to a bit of fun. She giggled and said , “Go for it”, so I held onto her elbow, kept my shades on and she led the way to the counter at the back of the store where two attendants were waiting . I asked, “Is this the iStore? “when the chap said yes, I announced politely, “I would like to buy some eyes”.
    There was a serious and awkward silence and then we burst out laughing.  The guys then joined in – I think very relieved at not having to make an appropriate response. We eventually got onto our real errand.

    I was reminded that life with a disability is not as tragic as a life where you cannot see hope. There is no option to buy ‘iSight’, but there is always an option to choose how ‘iSee’.

    P.S.I admire all things Apple and, in my opinion, an iPhone is a brilliantly helpful assistive device for any blind or blindish person… even without using the accessibility functions.

    P.P.S. Apologies for any emotional trauma caused to the iStore staff.

     

    Young and free or young and disillusioned.?

    June 16 Youth DayTwenty years ago, I would never have imagined where my life would be today. I am so grateful, but still have a tomorrow with decisions and relationships and choices that will affect where I am in twenty years time. I believe that eternity is in the hearts of all mankind, but am fascinated by the routes that many people’s lives take …and how they have arrived at this point, with unexpected twists and detours.

    When I consider many of the great heroes in the scriptures, they never had a cooking clue where they would land up one day. Like Joseph, the young upstart, with amazing dreams of greatness who found himself falsely accused and abandoned in jail. He must have wanted to just give up as it would have felt so unfair. His relationships with his brothers were destroyed; he was separated from his beloved father and exiled in a strange land. . I know I would have felt like giving up and even scoffed at the stupidity of childhood dreams. And yet, after years of overcoming hardship and being faithful in the tasks he was given, his breakthrough came. In hindsight it was probably the difficult lessons that he learned in those tough times that gave him the tenacity and single-mindedness to accomplish the things that he did as the second in charge of Egypt.

    In listening to the memoirs of Nelson Mandela I saw too how his struggles with unfair incarceration and pure injustice, placed him in a position to decide if this hardship would break him or make him. These tough decisions also shaped the strength of character that was required to lead a nation out of hatred into unity.

    When I hear the dreams that young  people have and notice the ease with  which they become despondent with the lack of fulfilment of these ideals, , I wonder if we have, in our endeavour  to encourage our children to dream, sold them a cheap and easy message that wont   stress them into greatness.

    With increase opportunities for education and the way we have encouraged our young people to dream big, I fear we have failed to mention how tough the road can be. The bigger the dream the steeper the journey can be. If their gifts and skills are more important than their character, they are likely to get disillusioned and disappointed. If we mentor the next generation by telling the stories of our mistakes and failures, injustice and hard times, they may have the courage to risk and fail rather than not risking at all.

    Have we really given them the true reflection of what it means to be great?

    Work is a privilege, not a right, and it is meant to be hard otherwise there would be no progression and no satisfaction. (We all have work to do … whether we get paid in money or not). In the same vain, if necessity is the mother of invention, then we will not move forward in creative innovations if we have no difficulties and no need.

    So I think that, in South Africa at the moment, whilst there is plenty of need, there is also plenty of opportunity for our nation to grow in strength and creativity.

    Let’s encourage and support our young people to take the narrow paths, with strong moral conviction, and build meaningfully, not just into themselves, but into our families and communities. Let’s promote spending a bit of time and money on their EQ ( emotional quotient) and not just on their IQ(intellectual quotient).May they be the type of parents they maybe never had, be the teachers they missed out on, be the leaders that they would like to follow and make this the society they have always longed to live in.

    I love the quote from Kung Fu Panda where the teacher says to Mo,” the past is history, the future is unknown and today is a gift … that is why it is called the present”. Go next generation! Write a new story for this great country.