Complexity

Earth, Holst, and Chaolity — Edited and Ready to Use

The solar flares — the aurora borealis — have appeared in unexpected places this year, and will continue as the solar storm carries on, with the unbelievable force of charged particles blasting from the sun and striking Earth.

This severe space storm could even knock out mobile phones this weekend.

I’ve always loved the incredible music of Gustav Holst, especially The Planets. He brings each planet to life through music. Yet he chose not to write a score for Earth. I imagine even the greatest mind would struggle to create an orchestral piece that could encompass the cacophony of noise drifting across space from our home planet.

The magical sounds of nature and laughter. The wind blowing gently through the trees. The sea lapping across sands and pebbles. The calls and caws of birds. Dogs barking, cats meowing, and the millions of other sounds that say: we are here. We exist. Our oval‑shaped planet is bursting with beauty, love, goodness, laughter, unity, and happiness.

It would be impossible to compose a score that captures the beauty of Earth and all its wondrous simplicity and innocent complexity.

Such sounds would be drowned out by thousands of aeroplanes of every size taking off and landing, circumnavigating the planet. The roar of traffic — billions of cars, buses, motorbikes, lorries, and trucks zooming along every road in every land. The blast of bombs, rockets, missiles, guns. The screams of the trapped, injured, and terrified. The gut‑wrenching cries from children and adults as they look upon the torn bodies of the person who, moments ago, had been living, breathing, standing or sitting beside them — loving them, protecting them, sheltering them.

Nothing Holst, or any composer alive or dead, could successfully create a score to summarise this — our home.

1. Mars, the Bringer of War

2. Venus, the Bringer of Peace

3. Mercury, the Winged Messenger

4. Jupiter, the Bringer of Jollity

5. Saturn, the Bringer of Old Age

6. Uranus, the Magician

7. Neptune, the Mystic

I can’t think of an appropriate name for Earth. The closest word is Chaolity.

Cochlear Implants

I came across something I'd written on my Facebook page in 2015 (at the bottom of this post). I can't believe it's only been 8 years since the Cochlear transplants, which have given me the gift of hearing again for the first time in over 20 years. Most people have one transplant; I received two simultaneously.

The dual operation was carried out by two comparatively new surgeons and overseen by the consultant. The 3-hour procedure entailed cutting behind the ears and peeling back the hair and skin before drilling a hole and attaching an electrode fitted with a magnet behind each ear. Records show the youngest person to have a cochlear implant was a 6-month-old baby girl in 2014. Today in Scotland, the youngest person to have a Cochlear implant was a 6-week-old baby girl. The oldest person was a man aged 103! The surgeons who performed my miraculous surgery were a young man and a woman. I've often wondered who did which ear. There's no outward sign of the electrode and magnet on the left side of my head above the ear; the right side is positioned higher on my head and sticks out. They both work perfectly, but one is better handwork. Until comparatively recently, my 'party trick' was to attach forks or dessert spoons to my head, but the magnets attached to the exterior of the cochlear were causing pressure pains. Now my party trick has been reduced to attaching teaspoons instead.

                         -------------

Written in 2015

Dear World,

I've waited so long to hear you again. To hear laughter and join in. To dance in rhythm to music. I've yearned to sit with family and friends and converse freely, not feign comprehension and interest when the reality was I heard nothing nor could I see to read lips, I was there but unintentionally excluded., I existed but did not live.

The indescribable joy of listening to my grandchildren talk and laugh, voices I'd never heard before. The peace and happiness of sitting by the window and listening to rain splattering against the panes. To wake to the sound of birds chirping and calling to one another.

Please I beg. Don't make the sounds I hear negative, full of sadness or prejudice or hate, nor let the voices of News Reporters drone on about how many more innocents have been slaughtered through mindless greed and power-obsessed demons.

How I yearned for 'normality' and re-engagement with the world outside. Yet, I would willingly choose to be permanently deaf and blind again if it would make a difference in this beautiful world tainted with screams and blood, negativity, unfairness, cruelty and injustice.

Dear world, I pray to make the sounds that echo around this hearing world positive and good and of happiness, peace and love. In truth, even though it would be painful. I would happily live enclosed in a world without vision and hearing than in a world of hate.

All reaction

The Simple Things

I've often wondered what my life would've been like if I hadn't sat under that eucalyptus tree all those years ago. It felt like I'd become a curiosity of science as doctors and specialists speculated and exchanged theories about the actual source of my unexplained dual sensory loss. It's easier for me to put it down to the spider bite, although that theory shocks some people. It could easily have been a combination of things. Travelling abroad used to entail vaccines for everything, we'll never know the exact cause, but I've spent a massive part of my life living with the consequences. 

I married had my children and worked hard to be a good mum, wife and business partner, but pretending to see and hear sufficiently in a world that didn't make allowance and inclusion for those things was soul-destroying. It's unintentional but extremely common for people with any degree of hearing loss to be 'left out' in general social interaction and within the family structures. 

I struggled on. I Studied Social work for a couple of years but had to drop out because of a lack of inclusion. The same happened with a Psychology course. I even completed a full computer programming course but didn't sit the exam. I was convinced I'd fail it because I hadn't had enough assistance. 

 I decided to join a Political Party not long before an election. It took courage to walk into the local constituency office and explain my desire to help and about my sensory issues. I was horrified when the man I spoke to told me coldly that they didn't need my help. I almost burst out crying with embarrassment and turned to leave, then I spotted another man in the room. He had red hair and a beard and looked kind and friendly. I tried to lip-read when he turned and spoke to the first man. "What the hell did you say that for Jim? Everyone is welcome in this office, and we appreciate everyone's help". He turned to me and smiled. "I'm Robin Cook. Glad you've come to join us. When you're on the biscuit run remember I eat Turnocks Caramel Wafers". He laughed.

Robin Cook MP later became British Foreign Secretary. He always spoke clearly and directly to me and, included me. He became my hero for his goodness, honesty, and fairness. I loved it when he brought his sons to my house and introduced me to them and had a cup of tea. The man who'd made me feel unwelcome was called Jim Devine. He became an MP after Robin's death and was later jailed for corruption.

Robin Cook transformed my life in several ways. He made me feel valued and appreciated. He taught me about politics, and he encouraged me to do things, he didn't look at me as deafblind, he saw the person. I became a campaigner and crusader. Thanks to him I made a brief appearance on News at Ten. Nine o'clock News and a political program. I secured a massive number of signatures to prevent the local construction of a massive waste incinerator.  

Everything changes. Life is simply a collection of phases - Frustrating times. Heartbreaking times. Loving romantic times. Times when everything is a struggle. Times of grief and heartache. Times of excitement. Nothing stays the same... I learned that the hard way...

   

I Am What I Am

Books. books. Once upon a time... I'd read an entire book a night. Which wasn't always wise when living in the outback, the bush or some other godforsaken place.

Imagine sitting under a tree in a dark, dense wood in the middle of nowhere. There's no moonlight. You curl up under the base of a tree with only an old torch and an open book. Suddenly. The silence is broken by the rustling of leaves close by followed by a crunch of twigs underfoot. You jump in alarm when the light from the torch begins to flicker...

Okay, well, I guess I'll never make an author, but I can tell the story of my life and what a life it has been. Yucky at times, wonderful at others. Exciting, challenging, scary, frustrating, isolating, lonely, unpredictable, dangerous, magical, privileged, and never ever boring.
I loved everywhere we lived, and yet I was always an outsider; I never fully belonged or fitted in. That is the way it was. My parents couldn't see it or understand it.  I think that they were selfish people in some respects; they could have left me at boarding school in England, but they chose to drag me around.

And so books were my friends and companions. Thomas Hardy (Shakespeare, I still keep the complete works beside my bed), my all-time favourite Tolstoy.  Conan Doyle... to name a few.

I loved my life and freedom as a child. I had no idea how that unique, isolated, lonely life would affect me and my relationships with other people. My relationship with people outside my direct family was nonexistent.  I was always an outsider, always had a different accent, and couldn't fit in at school because it was always different subjects. Different games, attitudes, behaviour and expectations; I was teased and bullied mercilessly because of my long, curly, bright red hair. It was the same everywhere except in India. Red is a holy, blessed colour In India.  don't know what was worse. Constant bullying or dozens of adults and children constantly gathering around me, trying to touch my hair, smiling and chattering loudly.

I always thought my mother was lying when she claimed a well-known Maharaja had informed someone to ask her if she would sell me for three elephants and some land; she successfully used the threat to sell me for a long time. Years later, I learned something that made me think she may have been telling the truth. "Red is an auspicious, sacred colour in Hinduism. Used widely in social and religious functions. It's a symbol of ardent affection, passion, and sacrifice. Scientific and psychological studies say, "Red enhances positive feelings". In my case, it's more 'red flag to bull'. 

My idea of absolute heaven was to sit beside ants' nests. I'd take treats and place them close by; Ants love sugar and anything sugary. They love fruits, meats, etc. They are seriously misunderstood and undervalued by humans. I'd spend every spare moment, day or night, sitting beside an ant's nest, book in hand.  These fantastic life-forces are the most intelligent insects on earth. They are in the bible, Proverbs 6:6-8. Greek God Zeus turned into an ant, and his son Myrmidon was an ant. The study of ants is called "Myrmecology" named after Zeus's son. Sadly, you can't really find ant nests in Scotland 

There were times when I craved human company, but the truth is, they didn't understand me or I them. Acquired deafblindness changed me forever. I like to think it benefited me, too, it enhanced my sense of empathy and awareness, but didn't change the isolation or stop me from feeling like an outsider everywhere I went.

Nowadays I love speaking in public about things that matter. I don't lay claim to being a great speaker, but I'm passionate and talk about life, disabilities and learning to understand and tolerate each other. 
There aren't enough words to describe my happiness at seeing shapes and colours again. It's only a minuscule bit of vision in one eye, but it's incredible even being able to see the difference between night and day again. I can see moving things too. My friend and I were out for lunch in the local garden centre; my friend was looking at trees for her garden and called me over and excitedly told me to hold out my hand. Then she placed two tiny ants onto my upturned palm. I squealed with excitement. They were tiny tree ants. So tiny that I struggled to see them as they hurriedly ran up and down my hand. I knew what species they were. Called  Formica and known as F. aquilona. They were wood ants, which generally live on the ground and feed on insects on birch trees. Their species is dying out in some areas of the UK.

In bed at night, I can still reflect on the marvellous places I've been and seen as a reminder of happier times. I used to love reading to my children; I was delighted to find a stack of old books in the loft. Enid Blyton's Magic Faraway Tree. The Tiger Who Came to Tea. Wind in the Willows and others. Happy memories of reading goodnight stories to the children and grandchildren... 
With all the travelling and changing landscapes, the acquired dual sensory losses, and always being the outsider and stranger, life hasn't always been easy.... but by golly, its been a magnificent journey.;

I am what I am
Not overly talented
Nor quick of wit
I am what I am

Touching Lives

Of the many wonderful places, I've had the privilege of giving talks in, George Herriot School is my unshakeable favourite for many reasons.

Built in 1668 as an independent boys' school. Now a Secondary, Primary and Day School for male and female pupils. This incredibly imposing school is situated in Edinburgh's Old Town, directly behind the towering volcanic base of Edinburgh Castle. George Herriot is credited as the inspiration for J.K. Rowlings 'Hogwarts'. The world-famous Harry Potter School of Magic. The school really is magical! To be invited back repeatedly to speak to the staff and pupils about deafblindness and, share my personal life experiences and opinions with them all was an unforgettable honour.

The main imposing building has a huge courtyard with towering stone pillars. I was told sometimes when the weather is agreeable, the school orchestra performs in the courtyard for selected guests. I came to know the deputy head of the Secondary of the secondary. His mother was elderly and had acquired deafness, which helped explain his keenness in encouraging students to learn about sensory loss.

I wasn't nervous about speaking to these privileged young people in fact I relished it. Humans have the appalling habit of judging others based on first impressions of dress, accent, posture, and other petty things.

My late mother made me walk around the house with a book balanced on my head. I hated it. She explained it'd improve posture, balance, and confidence. It wasn't until I was an adult that I realised she was correct. How we walk and position our heads and shoulders sends sensory signals to others. Someone with slumped shoulders and head slightly downwards indicates a lack of confidence, self-belief, and a defeatist attitude. Walking with head and shoulders straight and looking straight ahead is a sign of confidence. When you apply for a job. qualifications are most definitely not the only points that count.

I couldn't see the facial reactions of the pupils when I entered the classrooms. I didn't have to, I knew they'd be surprised by my confident manner. despite the red and white cane and dark glasses. They were! That first visit to George Herrot was astounding. I KNEW they listened to me., KNEW some were willing to spend time learning the deafblind finger manual and knew they connected with me.

I was invited back to the school a further 11 times with the same result every time. On my final visit. a couple of pupils from the classes I'd spoken to were waiting for me in the vestibule with the deputy head. They presented me with a bouquet of beautiful flowers and various gifts with the name and picture of the school. I know I made a lasting impact on a few pupils; Later I received a letter from the Deputy personally thanking me yet again, he'd enclosed five lovely handwritten letters from various pupils explaining how they each felt about various things I'd told them. What greater accord could I get than that.

Docere est talem - To teach is to empower.

See Me Hear Me

Finding My Voice: A Disabled Woman’s Fight to Be Heard

Having a disability and a job is an achievement — one thousands of people share. Finding well‑paid work is difficult enough for able‑bodied people, so the challenge is ten times harder for those of us who are disabled. And yet, many try. Then there are the outstanding Paralympians who amaze us with skills and abilities many able‑bodied people envy.

But there is another group — the disabled people who cannot work, never could, or who once worked but are no longer fit to. Some try to involve themselves in activities to gain that much‑needed sense of self‑worth. Others aren’t even able to do that. I call them the voiceless, because they depend on able‑bodied people to speak out on their behalf.

There is a section of society that still doesn’t grasp that disability isn’t a choice. It’s not a choice to feel redundant, worthless, or left behind. It’s not a choice to lose the ability to do the things others take for granted — or the things we once did with ease. It’s not a choice to depend on others, including family members who sometimes don’t deliver the help needed.

The hopelessness and enforced helplessness can be soul‑destroying. Heartbreaking. Demoralising. It can mean days and nights without end, wracked with pain, sleeplessness, depression, and sometimes suicidal thoughts. There are similarities to long‑term unemployment, but with one crucial difference: an unemployed person can hope things will improve. Most disabled people cannot have that dream.

For me, being without a proper voice was a near‑lifetime problem. Low confidence held me back long before disability did. I let chances pass me by because I lacked self‑belief.

The day I woke without hearing and most of my vision was the day I hit rock bottom — though I’d been close to it for years. I wallowed in self‑pity, hiding from the world, not daring to step past the doorstep. I hated myself for what I’d become, and for never speaking out about what I needed.

Then one day it hit me: The only person who truly understood what I needed was me — and the only way others could know was if I told them.

I'd wasted years of silence, and it haunted me. That same day, I decided to change my life. Yes, I am dependent — I can’t change that. But even without hearing and with little vision, I could still speak. And what a wonderful thing that is. I could still type, even if imperfectly. I could still communicate.

So I went out into the silent, blurred world — full of people I cannot hear, with faces I cannot see clearly, with lips I cannot read — and I said:

“SEE ME. HEAR ME. I COUNT TOO.”

I have feelings, rights, and needs. I’m going to fight for them, and I’m not going away until someone pays attention.

On Saturday 22nd March 2014, My voice was heard. A few amazing people recognised my right to speak — not just for myself, but for those who cannot speak at all.

Mike Dailly, a Scottish barrister whom I’d come to know through Facebook, encouraged me to use my voice. Jackie Baillie MSP listened to me. When I asked to speak at the Scottish Labour Party Conference, she agreed almost instantly.

Did I mess up? Probably. The odds of delivering a perfect speech when you can’t hear anything and can barely see are remote. But did I say what I wanted to say? Yes. I spoke for myself and for every disabled person.

And then came the backlash.... Instead of seeing it as a disabled woman achieving something extraordinary, the opposing political party — the SNP — used my appearance as a political weapon. They circulated a picture of me with the caption:

“Shocking — using a deafblind woman to talk about bedroom tax.” Where was the humanity?

Where was even the smallest hint of congratulations for doing something no one with my condition had done before? They will never know how difficult it was — nor how thrilled I was to have done it, even imperfectly.

I challenged any of those critics to stand on a public platform with earplugs in and layers of mesh over their eyes dulling hearing and distorting vision and give a meaningful speech rather than empty political point scoring.

As far as I’m concerned, I found my voice that day. And I used it. And I have continued to use it for a multitude of causes and organisations; in doing so have enabled myself to reach out to people who never imagined they could use THEIR VOICES and BE HEARD and SEEN/. I will continue to use my voice for as long as possible — NO ONE should feel VOICELESS and UNHEARD or UNSEEN. Over the years, I have met with and challenged politicians in Scotland and Westminster ... Thankfully, a fair number of changes have been implemented, Sensory loss or not. There are always dozens of causes to stand up and fight for,

Time For Society To Change

There are 290,000 deafblind people in the UK today.
The majority of deafblind people over the age of 50 have acquired form.
Usher Syndrome is the most common form of deafblindness, it is genetically caused by both parents carrying the same faulty gene. levels of hearing/vision and vocal loss vary from person to person, with some having near-normal hearing and voice. However, like all forms of sensory loss, Usher syndrome characteristically causes a decrease in senses with age.
Causes of deafblindness at birth include alcohol and drug abuse, infections (including herpes), viruses, and premature or traumatic birth. Many with acquired deafblindness have been able to hear and see normally throughout life. Acquired deafblindness can happen at any age. Causes can be illness, injury and age.

There are 7 million deaf/hard of hearing people in the UK. Deafness either from birth or later in life can have considerable impact on employment dependent on level of loss and ability to cope.
Life can be very challenging for anyone with sensory loss, although modern computers, mobile phones etc help enhance life for deaf/hard of hearing and those also affected by speech problems.
Although some people with milder forms of dual loss of senses can have a fairly normal life, those with more severe loss are less fortunate especially those with acquired loss.

There are a number of gadgets readily available for people with partial dual sensory loss, hearing loss or those born deaflind automatically instructed in the art of braille. Many gadgets also apply to singular sensory loss.

People with acquired loss in adulthood rarely know braille, enhanced sensory loss can mean gadgets for single or moderate loss are useless. There is virtually no gadgets on the market within reasonable price range for acquired loss in adulthood.

Some of the can't do's with severe acquired dual loss adulthood.
Use an adapted braille vibrating clock or watch.
Use phones or mobile phones.
Use flashing door bells.
Listen to TV or radio or read subtitles (captions).
Read books, magazines.
Use the computer.
Cook.
Clean up, select clothes to dress in.
Communicate...the list goes on. Some things can be done with assistance.
Like many progressive disabilities the mind remains as active as ever, the difference is they can neither see nor hear anything or anyone to fill the emptiness.

Even someone with minimal hearing or vision or both is often denied the ability to perform normal tasks in society in an independent manner.
The fact is there are NO adjustments made in society.
Even using a bank card in a cash machine can be impossible if vision is very low.

Everyone has the right to access services and have their disability included. Hard of hearing have inductive loop systems installed almost everywhere, they can also depend on vision to help them. The same applies with blind people who depend on hearing. Wheelchair bound have ramps and other adaptations which allow some freedom of movement and participation.

Given the enormous number of people affected by some form of sensory loss and the natural further decline or sometimes complete loss of senses in older age. Plus the fact we are an aging population then making changes, adaptations and inclusions to society now has never been more important...