Category Archives: independant living

The joy of two trees

If you follow my blog for low vision purposes, you may want to skip this blog and head over to my website; The following article is my own view on the festive season in 2020. ..which supposedly was a year for perfect vision. Perhaps it was.

This year, as our family prepares to celebrate the festive season, I carry an unsettling misalignment between ‘peace on earth, good will to all men’ and the reality of the deep darkness, loss and hopelessness of living in an uncontrolled pandemic.

In our family tradition the preparation begins by creating an atmosphere of celebration by putting on an assortment of Christmas music at high volume – some religious carols and other broadway songs about decorations, snow and Santa Clause. I prepare the spicey pudding sauce to fill our home with aromatic memories of gathering family, gifts and feasting at the table. 

The tree comes out of storage. The  string of lights are the first on the branches, then the tinsel to reflect the light, then all kinds of perfect little gifts, shiny baubles, and stars get added to the branches. As I cannot see very well, the tree often has bare patches where my blind-spots are. The gaps I leave are kindly filled by others. Then the little Father Christmases get  added.  I love that Santa has no body image ‘hang ups” (even though I am hanging him up). His fat belly, wide belt and cozy red jacket; his full white beard and jolly chubby cheeks, make him the perfect symbol of a wise, comforting grandpa. 

Lastly, I put the nativity scene under the evergreen tree –  the babe (prophesied as the Bread of Heaven) lying in a wooden food trough surrounded by kings and peasants. I don’t know why the figurines of the parents don’t look as exhausted as they should be after that horrendous trek to Bethlehem (House of Bread). It is at this moment when I| remember my childhood confusion about going to church on Christmas day, which was always a fun family-time, but the highlight was getting home for gifts. I felt a little guilty that the occasion should be kept a bit more holy than my want of presents. 

Back to the tree, the magic happens when we turn off the surrounding light so that the darkness makes the lights more visible. This is when I ‘saw’ the clash of the 2 trees against the darkness of living through 2020. A year of clarity. 

You may wonder what the heck I am talking about. Aside: this article is now R rated. You may need to exit at this point, because my view may cause offence.

 It is about the 2 trees. The Christmas tree and the wooden cross. linked by this pivotal verse from the law of Moses.

“And if a man has committed a crime punishable by death and he is put to death, and you hang him on a tree, his body shall not remain all night on the tree, but you shall bury him the same day, for a hanged man is cursed by God….” Deuteronomy 21:22-23 ESV (if you feel like an eye opening detour here, check out the writings of St Mark, verse 42 and 43 in chapter 15)

The reason for this curse was also because of 2 trees. The 2 trees in the garden of Eden. The tree of life and the tree of the ‘knowledge (light) of good and evil, naughty or nice, deserving or undeserving, both had fruit, like baubles hanging low for easy picking. Both were readily at hand and appealing to fill the hunger of mankind. In the story of this garden, the children walked and talked with their Father. He loved them so much that he said, “Eat from any tree of life, but don’t eat from that one, it’s not good for you”. Hmm, you know the saying is about curiosity and cats – well this also ended in trouble. 

As a parent I know that love and trust is shown by allowing choices and supporting children as they live out the consequences of their chosen option. Love lets go, but tight  control  breeds rebellion. Unconditional love gives permission to be hurt. Adam and Eve were left to face the consequence of separation, isolation, economic hardship, pain and struggle and it really hurt their father. I am sure they had many ‘When we… stories’. Hindsight brought clarity and regret for their lost relationship and daily provision. 

A perfect sinless person needed to take the punishment so that mankind could have this relationship of intimacy with the Creator restored. The only way back into this relationship was to go back to that place of picking and put the fruit back on the tree so that we can choose again. He had to be cursed, and the chosen portal was a  tree – a dead wooden cross upon which was hung the first fruit of heaven, the light of the world, the ‘last Adam’, the one born to die, who we celebrate at this time. He was given gifts that would prophesy his life’s mission. The wealthy, clever Magi from the East gave him gold (for deity) frankincense ( the fragrance burnt at the altar) and Myrrh (the aromatic spice used for preparing a body for burial). The poor, outcast shepherds brought him a lamb, representing his future sacrifice for the atonement of sins. 

This is where the similarities and opposites in these 2 Christmas stories converge for me. Spicy aroma of pudding sauce and incense at the altar, songs of ‘Peace on earth and goodwill to all men’, versus, ‘ all I want …” – a fat clothed bearded grandpa verses a skinny, bone-protruding (Ps 22), belt-less, naked son in the prime of his life, whose beard had been pulled out, and forced to wear a crown of thorns to mock his deity. Both covered in red; both hung on a tree in a public place for all to see; both bringing free gifts; both bringing joy to the receiver; both including all nations, rich and poor. One of them gives conditional gifts, depending on whether you are naughty or nice; the other giving freely to the self- acknowledged undeserving. One eating cookies and drinking Coke (which according to the old advert, ‘adds life’), and the other eating the bread of affliction and the cup of suffering as represented in the Passover meal and communion in remembrance of the sacrifice. One being served by elves, the other being a servant to others. One came down a chimney to bring free gifts and eat alone, the other came up from a grave and broke bread with friends to bring life to those who choose to receive it. One returning annually at night, at a predicted time, the other returning at night when least expected. Both, creating expectation for those who come to them like ‘little children, believing in what they cannot see’. 

Now when I look with my blindish eyes I see both trees in one, both reminding me of life and hope. And, in the music that stirs my heart today, is the voice of my heavenly Father singing, “ All I want for Christmas, is you!” 

Many blessings for a meaningful Festive season with family and friends in physical or virtual space.

Hope from the shadows

I am not sure how you like to negotiate milestones in your life, like a birthday, anniversary or new year. For me, it is always a time to stop, look back and be grateful; notice where I am now and ponder the hope between now and blessed eternity. As I sat here and quietened my soul, I became aware of the old painting on the wall behind my reading magnifier. Whist I can’t actually see it, I know what it depicts.

The painting is a view from within an old country church. There is a baptismal font on the left of a doorway and a large gothic door standing open, revealing a view to an antechamber with a bench and another door leading into the graveyard garden. I can’t make out much on the painting as it is very dark, gloomy and predominantly in shadow. I can almost smell the dusty dankness of old wood and cold stone. 

Today my eyes were drawn to the brightest line on the canvas. It is where the sun’s rays catch the top edge of the threshold. I gazed at it, more pondering than seeing. My brain was still thick with sleep allowing the image to relax into me before forming its relevance into two clear thoughts. 

Firstly, this is a step that makes me feel safe. One with a clear shadow defining it. When I walk about, I orientate myself according to the shadows. The sun shining obliquely onto an obstacle, provides the biggest contrast in tone and thus, marking an anchor point for my ever-moving blind spots. Shadows, for me, are securing. They allow me to determine the shape and size of an object and free me to move without fear of falling. 

The second idea trailed naturally behind. In my journey of life, the biggest shadows have become the clearest landmarks, when I open myself to the light of God. Here, as I write this, I find myself, looking to that peaceful garden and a lure to step into the antechamber of my life. A transient place for preparation and contemplation where we meet others who are coming and going on life’s journey. 

In 2020, the darkness of a pandemic has provided a delineating shadow that has made us all contemplate life’s journey. It has been a defining year, a year of clarity – that 2020 vision we so glibly declared on old year’s eve. It has defined what is really important in life. A glaring understanding of our mortality and the opportunity to adjust ourselves as we walk, with greater commonality, towards the hope of a new season. 

This brief interaction between me, my God and a step on a painting, has been a gift to me todayLook out for yours.

An image of the painting described in the article.
A painting by Ann Hammon

Kitchen for Seeing Hands

After response for re-blogging Kathy’s last post, I thought to add this one too. It gives useful information about the utensils and accessories that help anyone to navigate the kitchen safely so that all focus can go on the people enjoying food and time together.

Interior Disability Design Guide

‘The kitchen is the heart of the home.’
Kitchen design key requirements are to meet functional needs according to logical workflows. The starting point when designing any kitchen is to position the fridge, stove, and sink in a workable triangle. Remember the one and half meter distance rule between electrical outlets and sink/water.
Consider these sub-task processes in a kitchen.

-Unpacking food after shopping
-Heating up food
-Refuse and recycling

-Food preparation- Access to food, utensils, equipment, water,
-Serving a meal/distance to carry food
-Storage of household cleaning and ironing equipment

-Tea/coffee/cold drink preparation
-Cleaning up/washing up/putting away dishes
-Cell/mobile/technology charging station

These tasks are required for all people utilising a kitchen for daily tasks, but how can the kitchen be made better for people with low vision? There are four main headings to consider: Colour, lighting, touch (haptic), and hearing (audio). Not forgetting two important senses, those of smell…

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Planning a Kitchen for Visually Impaired People

If ever you get the opportunity to revamp your kitchen, many of these tips will prove valuable, even if you have perfect vision.

Interior Disability Design Guide

A kitchen is a mini factory and requires thoughtful functional planning. The kitchen is planned in the same way for a visually able person, but with a few additional design requirements and understanding. Visually impaired people are intuitive and adaptable to learn how to work/operate in an environment and have their own personal preferences to consider. The first layout decision is positioning the triangle of stove to sink to fridge zone, according to the available electrical and plumbing services. Each of these points on the work triangle require adjacent workspace.

The plan is an upside down U shape. On the left hand side is the cleaning zone shown in yellow. Top left to center including walk in pantry, fridge and vegatable drawers is the Zone for Consumables, shaded in green. Top right is the Preparation area and storage of non-consumables, shaded in magenta. Center right is the cooking zone with the stove and the pots in pale orange colour. The Dining counter is shaded in blue.
Plan showing functional zones

Kitchen design elements that will benefit people with low vision or visual challenges.

• Continuous counter-top height allows the user to slide bowls/pots/items along the surface to reduce handling mishaps.
• Counter material choices- Corian (Composite solid surfacing material) is the best choice, laminated surface is the next most suitable choice. Marble, or granite are the…

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World 2020: Welcome to disability. Can we help you?

Historically the weak, the lame and the blind are at the begging end of society. Familiar with loss shock, unfair limitations, loss without goal posts and usually finding acceptance and a new reality of finding some peace in the pain of it all. This is our normal. COVID has now made it yours too. Can we help you?

View of railway tracks through a crystal ball
See the way in an upside down world

Living through COVID has a lot more in common with disability. Everyone is facing loss of some Kind. For some it is unfortunately the loss of life itself. For most it is the loss of independence, loss of employment, ability to connect with others, inability to see faces or expressions behind masks (similar to early stage macular degeneration) and adapting to a whole new way of performing daily tasks. Everything takes a little longer. We are familiar with this.

The disabled community is made up of 3.2 Billion people worldwide. We are the largest minority group and hidden in every community, no matter what class race or creed. While the pandemic has made many things far harder for us physically, we are accustomed to  living with loss. For those of us with degenerative diseases this comes in perpetual cycles, like milestones of realisation when you struggle to do something today that you managed quite easily last month.  It is sad, but it’s ‘okay’ – it is our reality.  

That ‘okay’ means the process of getting to acceptance as quickly as possible so as to move on with emotional health. It is first the awareness that there is a loss, then identifying the feelings that go with that loss (the more specific the better), then the hardest part for me is actually feeling those feelings and staying with them, crying, talking or ranting with a chosen person who agrees to offer that safe place.  Then only, is it time to mop up, choose a helpful response and reach out to others in your community and ask for help or practical advice from others with your specific disability . There is always someone who has gone through something ahead of you.  No brownie points for doing loss alone. 

HereIn some ways, being part of a group of people with a common brokenness is really refreshing . No one has to pretend to be perfect or even coping. I rue the years I struggled using clever coping tricks so that no one would know I could not see properly. I avoided the emotional pain by partaking in every sport and risky activity as possible. I spent hours just running. See article:

 It was exhausting trying to avoid the constant stress, anxiety and humiliation every day just to appear ‘normal’ (whatever that is) and avoid asking for help. 

Who said that asking for help is a weakness?  Why did I believe that for so many years?  And why is weakness such a big deal? We are all weak in something. We all need others so we can be strong together. We are designed for community. Perhaps COVID has toppled the towers of self importance and leveled the ground to make us aware of the importance of life, of relationships of just being human. 

Loss can attempt to wrestle our identity to the ground, especially  if we are known by what we can, or can’t, do. We are used to being called, ‘the guy in the wheelchair’ or ‘the lady with the white cane’ just as much as you may be used to being called ‘CEO’ or ’Manageress’. COVID may have erased your title, or reputation, but don’t let it erase you. We are all human spirits who have been given a name, usually by our parents. We had life before we could do anything and it is no less valuable now. No label  of ability or disability is more important than you. You are here, now for a reason. Search for it, find it. Someone needs you. 

As we navigate this strange time in  history, let’s forget our labels and be there for each other. Work is a privilege, we can all do something, whether we are paid for it in money or not. We all have something to give – even if it is kindness,  gratitude, paying for the groceries of the person in front of you in the queue or a disabled person offering to listen to the heart of someone who is new to facing this debilitating loss. 

What blindness has taught me is that it is not so important what we see, but how we see. Loss always looks backward. Fear looks ahead. To break both, we can be present. How? What can you be grateful for right now? Say thank you out loud… to God or the air or the cat! Now call or tell someone what you are grateful for, and your eyes will start to see hope, to see what you do have. 

Ask for the eyes of your heart to be opened and use your ability to do something random for someone else. 

May COVID un COV-er real life in us.

Electric Books

Oh, my word!

Words create. Grouped together they form ideas, clarify concepts and uncover emotions. They can be breaking or healing, creating or destroying. Words, like single. little bristles on a hand crafted paintbrush, gather together in choreographed groups to curve, colour and create images that appear uniquely in every reader’s mind. Being able to see them, read them aloud, digest them and allow us to continuously form new thoughts, and so,‘in my book’ (excuse the pun) are a basic human right.

Recently my son drove me to the local library to pick up an audio book from the rather limited selection. AS we walked in I was overcome by the nostalgic smell of old books – a blend of dust, leather and tobacco…with a faint whiff of old style floor polish. It instantly raised the memory of my grandfathers study. I sniffed the air and reminisced aloud. He too, was yanked into memory lane by the smell of the pages, mindful of the joy of choosing childhood favourites that opened new worlds of adventures.

Tables of old library books filled the foyer and people of all ages, shapes and sizes were scanning through the treasures in search of those classic gems.

Acrid jealousy hung in my nostrils as I grieved the loss of being able to read a book. The fleeting emotion of self pity wafted over my heart with the loneliness of not being able to join this assortment of people enjoying the hunt.

Then I took my thoughts in hand shooed them towards thankfulness. It is a privilege to live in thees modern times where technology gives me access to electric books.

My cell phone does not quite have the same memory jolting scent (yet) but I do , with some double – tapping and poking around, get to listen some great books. Scan reader apps, and a little more effort, also allow me access to ordinary books and, for those with the privilege, there are some excellent audio libraries online.

My recent introduction to artificial intelligence, gives me much hope that the advance of technology will once again allow us blindies to put our noses back into old style books.

…and that’s not my last word on it.

Loo-king for relief

One of the toughest things about travelling to other countries is that signage and placement of almost everything is unfamiliar. I have a weird obsession for interiors that make sense for the vision impaired, illiterate or people who do not like reading.

Design for inclusion of all types of abilities is a little more complex than one would initially think.

I came across this really great loo sign in Toronto airport. The size and contrast is perfect for people with tired eyes or low vision as well as including a small sign for those with tunnel vision who have little peripheral visual perception. One of the signs is low enough for little people, children and and those in a wheelchair.

I also found a long textured tile pathway in the middle of the walkway, which most sighted people would not even notice. It is a useful texture feedback guide underfoot for those of us who are not quite sure where to go, as the corridor is visually ‘cluttered’ with display stands, street restaurants and groups of travelers standing around. I found it a reassuring guide.

‘Looking out’ for inclusive design seems ironic for a VIP, but I am grateful to those architects who take the time and effort to make it happen.

Finding a loo, without too much trouble is a real relief!

Camouflage Carpet

We inherited a beautiful Persian carpet from relatives who immigrated. It is plush and colourful with a bold black background. We decided to put it into our bedroom and it is there that I discovered it’s mischievous, secret addiction. If I take off my slippers next to the bed, they are nowhere to be seen in the morning. I have lost shoes, cell phone chargers, handbags and even the dog on this carpet. It is only when I close my eyes and feel around the floor, or stand on a yelping pet that I know it is not really the camouflage carpet, but my inability to see detail. The surprises on the floor keep me chuckling.

Our next carpet will be monochrome!!

Sunshine Surprise

It was a cold, crisp Friday morning as I pulled on my gloves and headed down our sunny driveway to start my day. I had a spring in my step as I headed into the sunrise with all the joys of a new day playing hopefully in my minds eye. Our complex was peaceful and I presumed all residents were out an about, so the “hello” from the shadow bumped me right off my rails. I let out a whoop, quickly followed by a laugh and I think my neighbour got a bigger fright than I did.

Oh, the joys of low vision and not being able to see anything in a shadow!

We both recovered with friendly apologies and explanations…and now he knows that my mobility cane is not just an optional accessory.

Low vision awareness, happena one awkward moment at a time.

How we see it

  • A person holding a picture frame through which they can see a hang glider in the sky.

  • 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.