Category Archives: Living with blindness

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.

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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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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)

About time

clock reflectionThis morning I was late for a commitment. I was meant to be there at 7.45am. I was up early and thought that I was on time, so when my husband said, “It’s 7:35 I realised I needed to shower, wash and dry my hair, dress and be there in 10 minutes …. not going to happen.

Being a teacher at heart I was pondering my mistake whilst brushing my teeth at breakneck speed. It was then that I realised I was gauging my routine by my husband’s normal schedule. . He usually leaves at 7.25 and this morning his responsibilities were different and so his routine was not usual.

In the seconds between brushing and rinsing my mouth I realised that I hardly ever look at a clock. I judge time by other indicators.

I love revelatory thoughts, but they seem to pop up in the most inopportune times. Whilst multi-tasking the rest of my own beautifications at high speed I thought about the time clues that lurk in the backyard of my brain.

The geyser turned on …it’s half past four.

The Cape Robin is performing his entire repertoire of songs…the sun is rising soon.

The bus turned down our Street…it’s ten past seven. #

Our   neighbour is reversing out of his garage …it’s 7.30

I hear builders next door …it’s 7.45

The dog’s next door are going nuts…the children have just left for school …it’s 7.50 am

I can hear children playing in a playground…it is 10.15am

On Thursday the domestic service has arrived next door…it’s nearly lunchtime

The cat is meandering around my feet …its 5 pm.

On Tuesday nights the crowds at the sports club stop shouting…it’s 9.30

Using other people’s routines to keep my own appointments is not really the most accurate indicator of time. It is quite alarming

…I should have set mine!

Let’s face it

faceVision loss is a tough companion to learn to live with. It means that as your vision changes, your relationship with yourself and others needs to adapt too.

Recently my father-in-law relocated to eternity and so , we had a rare  opportunity to get together as an extended family and close friends to celebrate his  well-lived  life and to rejoice in the hope  of the next generation of Webster’s and co. It was a sad happy time reconnecting with loved ones from around the world.  Somehow, if you don’t see each other often the changes you see in each other seem quite dramatic.  The little chaps are now big bruisers and us ‘young marrieds’ are now the ‘old marrieds’. It was in meeting old family and mew additions that I realised how my eyesight has deteriorated since our last meeting.

The family also noticed the changes in me as I now use a mobility cane, can’t collect the glasses off the table after dinner and am no longer the scrabble champJ , but what hit me ‘in the face’ was not a low branch over a walk way, but was that I could not see expressions on faces at all. In a social environment this is a big deal.  I was disappointed that I could not easily understand or gauge who these new loved ones were. Not able to look across a room and smile or nod in greeting etc.  The up side is that I just tried to spend a little time with each one, so that I had a reference for relating.

On our return I went to the Low vision support group where we spoke about  the obstacles around communicating without the feedback of facial expression. And, something I had never thought of …what is my face doing when I talk? I can’t even see my own face in the mirror (which may be a relief for my middle aged wrinkles) .  Also, eye contact is an important portal for social intimacy, as we can communicate through just looking. Children can gain confidence and trust through meaningful glances and encouraging smiles. Reflecting on our family gathering   I really felt like I was missing a channel of communication especially with the kids.

Being two-faced is always a problem, but being no -faced is exceptionally tricky. I find it difficult to aim my nose at people’s faces because they disappear in my central vision and, because my eyes look normal, they think I am seeing them …or think I am maybe high on something!!! It must be a bit weird looking onto eyes that aren’t actually looking back at you.

On discussing this with a mentor she told me that 7% of our communication is relayed through the actual words, 38% of our communication is transmitted through the tone or how we say it and 55% is related through facial expression and body language. Visual impairment thus greatly affects communication and places added hurdles in the way of easy social interaction.

I am very aware of body language and it is easier to see people in winter because clothes usually provide a good colour contrast. I see clothes moving about  and  as long as folk keep their heads above their shoulders, I can aim my nose for the designated  spot. When I see sleeves swinging about, there is generally an animated conversation on the go.

When I am talking to someone and they become still, I can’t always gauge how they are responding. I love it when sounds come out …”sjoe”or,” wow”….or,” hee hee”….or,” aaagh”  ! It is an expressive clue to their facial expression.

I am so grateful for my family and friends who are available for encouragement and help in all social contexts. I don’t know if you realise it, but you ‘smile’ at me by a squeeze from a hand, a touch on the shoulder or a friendly bump on the elbow. My smile-voice is usually loud, slightly over expressive and accompanied by touch.

Let’s face it …vision loss is tough, but love is tougher.