World Book Day Evolution

Tags

Blind, Books, Life lessons, Love, Sight Loss, Thanks, Worldbookday, Writing

It must have looked weird. A blind woman being led by her guide dog walking around the books shop, but it just had to be done.

As the guide dog whipped past the cookery books, travelled through the sci-fi section and ended up in the land of the fun-filled children’s books, the owner rewarded him with a treat. He had guided her to the place that she missed the most. From Willy Wonka to The Secret Diary of Adrian Mole, books had always been fun companions during her childhood and had always left her wanting more. Along with millions of other children, she loved to escape into books of all types and feel like it was just the author and the reader that were in this alternative reality. Life lessons that trickled from the pages of each book, cleansed her mind from the negatives in the world and broadened her consciousness to what humanity was really about.

Even back then she could not really see the words clearly. There had always been a hazy double vision around words, but she had developed her own fun way of dealing with it. She learnt to read by a method of deduction. A five-lettered word that had a hazy straight line and a fuzzy small hump attached lower down was obviously a h and a slanted blur that extended lower than the other letters was obviously a y. With 2 similar looking 3rd and 4th letters that were seen in double vision, the letter could be nothing else but ‘happy’. As the years passed, she began to rely less on her eyes to see and more on her brain to decide what these words were in front of her. She read at a rapid pace and could not get enough of the author’s voice that came alive in the treasured books.

Time passed and reading books got more and more difficult. Even the ‘sniff it to see’ rule that she had always lived by, where she held the book close to her nose, no longer worker so a plan B was needed. Magnifier’s and other aids from the low vision clinic could no longer help but technology came to the rescue. Audiobooks, e-books with narration and screen readers on laptops all made it possible to remain an avid book worm. Even dabbling in a bit in braille meant that there were no barriers to becoming one with an author again. Reading to another however, was something that she really did miss. Reading large print books with her children as they grew, allowed her to ‘sniff to see; and memorise the books after reading them a couple of times. She now wanted to do this with her sweet 3-year-old granddaughter and thanks to modern day Apps on her phone, she was able to know what the books said and memorize them to read back to her beautiful little angel. Life was blissful again.

Standing in the colourful corner of the book shop where dinosaurs popped out of books and glitter from the exquisite cover left magic on the fingers and heart of the reader, she stood happy in the blur of fuzzy colour that awaited her. Pulling out her phone to use technology to be able to identify what she was looking at, she choose a new book for her granddaughter. Her guide dog patiently waited and sniffed some adventures out to help the best he could. In six months-time, their book would be in a similar joy filled labyrinth of a bookshop which was such a strange but warm feeling. People would soon know how special Munch the guide dog really was and discover what he was really like. The mischief makers secrets would be out and hopefully spread a little happiness to the reader. Stories are always the most powerful when shared.

Here’s to wishing that stories will continue to be spread in a variety of different ways that allows accessibility to all. Thank you to each author that changes the lives of people that they may never meet in person but will always be connected through meetings of the souls.

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Judge, And You May Need An Umbrella

Tags

Blind, Disability, Dog, Education, Guide Dog, Life lessons, Mobility

Call me pedantic but I really didn’t fancy getting my foot wedged down the toilet again.
After last year’s faux pas of attempting to delicately step over Munch in the toilet cubical and ending up slipping and dipping my toes into what I hoped was clean H2O in the bottom of a Tesco’s toilet, I have been a little wary of our ability to fit into a standard size toilet cubicle. Now, I love Munch dearly, but I often wonder if his dipsey ways are from being away with the fairies or just a sneaky plan of watching on in glee as my mishaps multiply. The day in question, he appeared not to understand the “come on sugar cube, forward” that I used to coax him into getting his pony like body into cubicle, hence my slip and dip routine where my foot decided to dive into the toilet as I clumsily clambered over him. In all fairness, as soon as he heard the splash, he came alive and turned around and closed the door with his nose. If I had functional vision, I swear I would have seen his shoulders shaking with silent laughter. Sorry, I am digressing from my original point. It is virtually impossible for me and lofty Munch to fit into standard size toilet cubicle accident free, so we sometimes need to use the disabled toilets if the standard ones aren’t large enough.
A few weeks ago, when we successfully emerged from a disabled toilet with dry feet, I was happy. That is until an irate woman snarled at me as I walked out. “You do know that this is a disabled toilet don’t you” she seethed. Me being as vacant as ever replied “Yeah I know” with matching puzzlement in my voice and probably my face, “You shouldn’t be using it should you” Chirpy Cheryl chastised. “Do you actually have a disability?” Chirpy Cheryl huffed, puffed and tutted with raised blood pressure. “What?” the childish me snapped back. As I heard the pennies fall in her head, Chirpy Cheryl did become chirpy as she started to apologize profusely for not noticing 31 inch high Munch. This not looking blind malarkey did not half get me into trouble. Chirpy Cheryl would not be the first nor the last to jump to the conclusion of what a disability does and does not look like. My daughter who was waiting outside the toilet heard the conversation and we talked about it afterwards. The accuser of the “queue jumping non-disabled person” herself did not appear to have any external clues of a disability but we did not think about questioning her about her entitlement of using the disabled toilet as our minds were not confined in such a narrow space.
Call me bad minded but I think Chirpy Cheryl has many like-minded friends around the place who also like to question your entitlement to join them in disabled facilities. Being blissfully blind to most things around me, I never see the judgement on other people’s faces but people who I am with at the time do. Parking in a disabled car parking spot the other day, we were bitterly embraced by Cranky Colin who we parked next to us in a disabled bay. As my daughter merrily popped my Blue Badge on the dashboard, she commented that Cranky Colin’s scowl towards us was intensifying. As we gathered our things together to get out, my daughter told me that Cranky Colin had suddenly transformed into an owl as he whipped his head around to watch us go to the boot to get Munch out. Even as we walked away on the pedestrian area in front of the car, I was told he was still glaring and had added a few head shakes and I am sure I felt some heat seeking missiles being aimed at my back. I mean if someone is walking with a Guide Dog and has a blue badge, it is fair to say that they can use a disabled parking spot. The Chirpy Cheryls and Cranky Colins in the world maybe should rethink the judging that they do. People who have disabilities and health conditions that require disabled facilities themselves surely realize that empathy is a far better option that hostility.
Unless we have x-ray vision and a medical degree, let’s not pretend to be experts on how hidden disabilities and health conditions affect people. Surely the Chirpy Cheryls and Cranky Colins in the world that themselves live with health issues should know what it is like to be judged. Tuts, headshakes and snappy comments will always say more about the one making them and little about the person they are directed at. Chirpy Cheryls and Cranky Colins may always exist but we can always take steps to educate them. Failing that, we can always send loving unicorns their way and hope their glittery poop that they drop from overhead adds some sparkle to their dull lives. Love and splattering’s Cheryl and Colin X.

Working With Humans

Tags

Blind, Blogging, Dog, Guide Dog, Humour, Labradoodle, Patience, Photography, Sight Loss

How many times can she get it wrong?
Today has been so frustrating. I have been sitting here like the perfect Labradoodle that I am and there she is being the typical scatty maid as she is. Humans are the weirdest creatures ever. We have been here for nearly two hours to record a video of us which will last less than a minute. We would have finished much sooner if my daft maid could string a sentence together without saying “Um” and “no, start again” over and over whilst speaking English, Welsh and Martian all in the same sentence. Why couldn’t the Guide Dogs have matched me with someone more efficient?
Luckily it was my favourite dog walking footman that was with us as he encouraged us to have lots of breaks in filming and led us all to a huge field so that I could have a well-deserved run. Meeting other dogs here meant I could remove my regal robes (or harness as some people not in the know call them) and exercise my gracious body. I even led other dogs to believe that I was an equal as we played together and not the King that I secretly am. Such fun.
Unfortunately, after I had had my well-deserved break, we were back to getting yet another video completed where apparently the maid had gathered her thoughts and was now able to string a sentence together to record the short promotional video for the Writers Workshop for the publisher that we needed to film. I am seriously considering getting another writer for my next book to ensure that not only does everyone know what an amazing guide dog and everyday Idol that I am, but also to let the world know how frustrating it can be when you really can’t get the staff to do what you want.
Working with humans has taught me many things which are.
– They are so fussy about things that they really do not need to be fussy about.
– They need to sniff often, play more and love everything.
– They over complicate the simplest of tasks. Either do or don’t. That’s it.
– They need to run like no one is watching and chase their non-existent tail just to know what it is like to be in the moment more.
– They need to realize that a picture of you from any angle is a good angle because you are perfect just as you are.
We finally got to finish the video when the maid’s mouth became friends with her brain again and I was free to sashay away with grace. Humans can be so hard to control.

The Funhouse Of Mirrors

Tags

Blessings, Blind, Life lessons, Sight Loss, Visual Impairement

The scariest time in my life was when I could see. Well, I say see but maybe I mean see more. OK, so maybe the right term is that I could see something in a little bit of focus. Thinking about it, focus is such a strong word to use here. Sorry am I confusing you? Let me start at the beginning.

There I was sitting in the ophthalmologist’s office nine months after having a cataract operation that did more harm than good but c’est la vie. “The thing is, although it is quite fun walking around like I am looking through a distorted version of Funhouse mirrors, I cannot carry on like this. The lack of depth perception is causing me more injuries than before and looking at out of proportion objects is pretty scary if I am honest” I joked with the blurry stretched man in front of me. He abruptly
answered “we need to give it more time”. “Nine months is enough time, I want it removed” I answered matching his tone.
This stubborn standoff had been going on since I had my cataract operation 9 months earlier and it was long overdue to be resolved. Since this alien object had been placed in my eye, nothing but tantrums and melt-downs had happened in the ocular area with post-operative inflammation and Edema on the retina being the main instigators of the uprising in my eye. I was now requesting an eviction notice to these angry duo as I could no longer deal with their nonsense. So here I was pleading with this nine-foot-tall, egg timer shaped blur in front of me in the hospital room who sat on the rugby ball shaped fuzzy chair. Daily entry into the Funhouse of mirrors really needed to be a thing of the past.

My mule like pig-headedness paid off and I was back in the operating theatre removing the mischievous lens that they had implanted, and I was left lens free and back to being able to live my normal double vision, fuzzy life that I always felt safe in. It seemed that everyone around me felt sorry for me that I was becoming “broken” again after the operation was not able to help me, but I felt a different way about it. I had never felt broken before due to my sight loss, it was just normal. Medical staff and everyone around me seemed to be tempting me into the world of the sighted to “fix” the way that I had been since birth.

When I entered the semi sighted world for that brief amount of time however, life was far from rosy.
I went from seeing birds as gargantuan shape shifters instead of mythical creature that I had never seen, to not being able to reach out to an object in front of me due to the immense difference in depth perceptions in both eyes. Vague faces became things that I could kind of make out but didn’t always match my version of them that I had been carrying around in my head for years. I noticed myself judging things in other people that I had no right to judge, as I began using my eyes alone to absorb my environment and ignored my other senses. I knew that this was not the world that the fully sighted saw as everything was out of proportion and seemed to be the wobbly bridge between the sighted and sight loss world. I was so relieved when I got off this wobbly bridge and returned to the sight loss world with less sight but more confidence.

Seeing the beauty in life cannot be seen through the eyes alone but they can be a magical tool in appreciating the world around us. My time in the Funhouse of mirrors taught me many things and I am glad I had a chance to play around in it for a while. There is always a light-hearted view available in uncertain times of transition if you search hard enough.

Sight Loss and Parenting

Tags

Beauty, Blind, Children, Disability, Gratitude, Life lessons, Love, Parenting, Peace, Sight Loss, Thanks

Inhaling the heat on the skin and the unwanted scent of illness in the small body, you can use more than eyes to observe illness in a child. The activated response to a smell of a dry nappy becoming wet, alerts you to the need for a swift change. Opening the door to smell if there is petrichor in the air before it starts to rain, lets you know if the children will need coats to keep them dry. When a sudden whiff of Sudocrem joins you in the kitchen, you know you need to follow the trail to confiscate the pot and start the clean up operation on everywhere that you cherub has covered with this villain.

When silence falls in a chatty house, you need to peek to see who’s turn it is being the ringleader in the mischief being caused. When your child’s jangling zip on their boot gets further away from you in the playground, you need to follow the sound to keep them safely in ear shot. When you hear your child’s favourite toy fall, you pinpoint the exact location to reach your hand out to reunite it with its joyful owner. When you hear the whizz of the bike wheels coming towards you, you remind your child that you must always be aware of all oncoming dangers and wait to cross safely. As you hear the squeal of joy escape from their perfectly formed lips, you join their celebration despite not being able to see what is exciting them.

Remembering the different feel of each of their coats, you help put them on the right child for them to go and warmly explore the great outdoors. Differentiating between the pristine feeling lunchbox of one and the scuffed one of the other, you pack their lunchboxes with their personal choices. Touching the top of your child’s head and feeling their unique hair type, you can tell the difference between your children of similar height. Cutting toe nails by touch, you learn to trust your judgement to do what others do by sight. Picking up toys with fingers on high alert, allows you to keep their favourite games together for the next time they want to play.

Knowing that they are going to fall before they do, allows you to be there to catch them. Tuning into the energy of their friends to know which will always make them happy, you are alert to those who will upset them and prepare youself to be there for them when they do. Knowing that you will not make the meeting as you need to be prepared, you are able to act calmly when the phone call from school comes when they have had an injury. Being assertive enough to tell doctors that they are wrong about it being a stomach bug and telling them it is actual a ruptured appendix, you don’t get shocked when they rush your child to theatre as you are just glad they caught it in time.

Memories of raising four beautiful children under the age of six, fills me with love and joy. These wildly different souls who are now adorable young adults, mesmerised me with their abilities as they grew. I may not have been able to see their expression filled faces or the true sweet mischief that they caused but I always saw their unique selves. Eyes only allow us to see what we want to see but other senses allow us to know on a deeper level. Maybe if I was gifted with sight from birth, I may not have known my children as I know them today. As my little cluster of beautiful being’s glide through life in whichever direction they want to take, I hope I can still learn from them each and everyday and see them exactly as they are.

I love you all in every way that you are.

World Braille Day

Tags

Blind, Celebration, Guide Dog, Sight Loss

Happy World Braille Day. January 4th celebrates the birth of Louis Braille who created the reading and writing code for those with sight loss. At the age of 15, he created this system of communication based on Charles Barbier’s writing system. Louis Braille did not live long enough to see the first braille curricular adapted by France’s Royal Institute for the Blind Youth which was implemented two years after his death. His genius invention lives on and can be found in everyday use in literature, public places and in various other places but a lot more needs to be done to ensure that this accessible form of communication is more wide spread.

Personally, I have only started learning braille over the last two years and I have only learnt grade one braille which consists of letters, numbers and punctuation. The grade two braille that consists of contractions are used in one or two cells to correspond with groups of letters or whole words. This is something that I want to work up to. Braille shorthand or grade three as it is otherwise known as, is something that will take a while to master but as it is used the least in the blind community then I am in no rush to learn it.

With the use of vast text to speech programmes and digital equivalents of braille available today, not all sight impaired individuals opt to learn braille but there is something quite beautiful about the textured words that flow across each page.

Having used touch since birth to be able to process information that most process through vision, there is something quite magical about feeling the written word. As the little dots transform into letters and words from textured pages, the brain becomes awakened to an alternative existence that not all are blessed to know. Slowly reading each word as it appears on the page, allows you time to really connect with each word one at a time. Feeling closer to the author’s voice is a fortunate by-product of reading Braille as the brain interprets the word kinetically. Activating another sense to enter the world of the written word, allows an alternative portal to be opened to the reader where old words take on new meanings.

As 15-year-old Louis devised this system that has been universally adapted today, I wonder if he ever perceived how popular it would become. His invention can now be felt on places from door signs in many places, on buttons on stop bells on public transport and to medication packs at supermarkets. His contribution to the world needs to be celebrated more as he has given the gift of connecting individuals with sight loss to the sighted world.

Working my way up to grade two Braille is something that I feel I need to do. Not only would it be an amazing skill to have but it also feels like it is a mark of respect for an individual who has changed the lives of many. Thank you, Louis Braille, for creating instead of waiting for another to create.

The Stages Of Learning

Tags

Blind, Children, Dog, Education, Guide Dog, Kindness, Life lessons

With tiny soft fingers brushing my extra long ones, we walked side by side as we were led around the aisles. Avoiding customers and cages of goods ready for the shelves, on duty Munch made shopping possible. Taking us to our usual products in the shop, he waited patiently as my beautiful granddaughter’s little legs caught up with us. Here stood, the novice, competent and expert in the guide dog world.

Learning about animals is one thing that a child can never learn too early. It not only helps a child learn about empathy and how to care for another but along with many other benefits, it also taches them to have respect for all living things. She was introduced to Munch when she was 9 months old and he was nearly 2 and their love and respect for each other has blossomed into beauty. As she gently cuddles her gentle giant, they melt into each other with unconditional love.

When I was first introduced to Munch, I never thought that I would get the hang of not only the taking care of a dog but also the numerous commands and body positionings that you need to know for work with a guide dog. Reaching the competent stage of being confident enough to work with Munch anywhere has taken quite a while. We are blessed that our oddness in life is the common theme that has united us as one and helped us keep our oddness alive.

The expert in this new world is Munch himself who I am sure has lived many lifetimes and brought with him wisdom from each one. I joke that he was not put on this earth to work with his entitled view of where he fits in the world, but I cannot imagine him being anything else. He loves it when we are out meeting people and guiding me in an experienced manner that comes to him with ease. He could never be a stay at home dog. This wise old sage knows life lessons that many have yet to discover.
Learning from such cute wise experts helps to satisfy the inquiring mind. As the “why’s” fall out of my granddaughter’s sweet mouth, I feel blessed that we have Munch as an example of the answers to give. Why I need a guide dog, why he needs a harness, why we need to show him so much love and why he is such an important part of the family are the why’s in life that I never tire of answering. I have a sneaky feeling that Munch never minds teaching either as he leads us through life, leaving the trail of Munch magic behind him.

My Lucky Life

Tags

Animal, Blind, Dog, Gratitude, Guide Dog, Labradoodle, Sight Loss

“I am so sorry to hear you have lost you vision” said the blurred figure in front of me. The sincerity in his voice was sweet but my ears tried to deflect the genuine regret onto someone who really needed it. Standing by the bus stop on the way back from work, we had spent the last ten minutes talking to someone who knew me but I had no idea who they were. I did not recognize his voice or his shadowy blurry outline, but he knew a lot about me which was a little bit strange to say the least.
I always seem to forget that people use their eyes to recognize others and not voices, unique sounding footsteps or method of deductions to recognize who is there. This person knew where I lived and knew my children and I had no idea of who he was as his new voice made its way into my memory bank to be filed alongside the masses of others I had met throughout my lifetime. It must have been the puzzled look on my face that told him that I had no idea of who he was which prompted him to explain that he used to live on my street. Phew, panic over.
The first time he said that he was sorry that I had lost my sight, I felt a little shocked at what he was saying as if I am honest I had never felt any regret from loosing my sight. This was however not a thing that you could share with everyone as it was not an easy concept to explain. The fact that I usually forgot that I could not see can be hard to comprehend so I usually kept that one to myself. Explaining to others however that I had gained so much insight from my sight loss may still have been alien to them but my reasonings may be a little easier to understand.
My sight loss although is not ideal, is not fatal. Unlike some of the other side effects of Marfan Syndrome, sight loss was inconvienent but not life threatening. If I had perfect sight from birth I don’t think that I would have the unique view on the world that I am blessed with. I would not have learnt to think outside of the box and learn alternative coping strategies to make me lead a fulfilling life. I would have not met others that I know in the sight loss community either that have enriched my life. Most importantly, if I had fully functioning vision then I would never had met Munch. So sorry I am not.
I loved the sentiment of this blurry figure that stood in front of me as he was coming from the most compassionate place and thanked him but even after explaining to him that I was thankful more than sorry he just didn’t get it. It is never easy to understand another person’s life when we only have our own lives to match it too. It is sometimes those who appear to be without that are the actual ones that have the most enriched lives. I love my life and all that it has brought and would never want to change anything about it. I am thankful every day for the lucky life that I lead and hope that we can all someday start to appreciate how lucky we truly are.

My Positivity Default Setting

Tags

Beauty, Blind, clarity, Freedom, Gratitude, Happiness, Inspire, Marfan Syndrome, Motivation, Positivity, Sight Loss

Apparently, the world is a place full of disasters, suffering and misery where negativity reigns over the masses and keeps them from living the life that they really want to live. In this place, happiness is only limited to the chosen few and withheld form many. People are blocked from doing what they really want to do by the social constraints that are unfairly forced upon them by people in power and they can never do anything to change this. People in this negative world cannot control which way their life goes as they do not posses all that they need. This place sounds like such a soul-destroying place to live in. I am so glad I live elsewhere.

My alien invasion on this world that others speak of, makes me eternally thankful that my reality is so much different. The world in which I live is full of miracles, blessings and bliss where positivity is available to all to help them achieve the life that they really want to live. In this place, happiness is available to all and withheld from none. People are free to do whatever they want to do by their innate drive to want to succeed and by the support from the people in which they choose to surround themselves by. People in this positive world chose the direction of their life and the thoughts that they think by realising the simple things in life are all that they need to achieve the unachievable. This reality is such a magical place to live in, I am so glad that I live here and wish we all would.

The world in which we all live in, is the same world regardless of how we wish to see it. Choice on our external circumstances may be limited but we always have a multitude of choices available to us on how we perceive our internal reactions to these, it is only our limiting beliefs that close or minds off to living our life to the fullest regardless of the resources we have available to us. Sometimes it is the challenges in life that give us the most positive outcomes, as growth sometimes needs resistance to make it worthwhile.

My life may have never been easy, but I have always been thankful. As my friends in childhood led carefree lives, I was in hospitals for tests, scans and treatments but I never once saw this as unfair. I was thankful that I had the care that I needed. As I had operations over time when others remained scar free, I was thankful that we live in an age where things can be fixed. Loosing the blurry sight that I was born with made me thankful for the other senses that I still had and use to understand the world that others talked about. Experiencing pain from childhood from injuries that most will never experience, makes you thankful that you feel the pain as at least you know you have the gift of life. Being born with a connective tissue disorder that can affect all your body systems makes you feel blessed that you are still alive when others are sadly not.

We always have the choice on how we see the world. Saying to people that I have never seen the negatives in life is never an easy thing as there always seems to be more of them than me. I think that there is always something proactive that we can do about the less than desirable things in life to change it. My positivity default is unlikely to change in a life that has been so kind to me so if I don’t feed into the negativity default of a situation it is not because I do not care. It is the exact opposite. Switching from the negative to the positive default setting is the best way to help another so I am always ready to help flick your switch if you ever need it.

Here We Go Again

Tags

Animal, Blind, Dog, Guide Dog, Happiness, Humour, Judgement, Pets, Sight Loss

Don’t you just love it when the thoughts you are having in your mind manifest in front of you on the face of another. It makes you feel like you are not alone in the world thinking these thoughts. My daughter captured our thoughts in the facial expression of on duty Minster as we entered a familiar conversation with a stranger. After chatting to a lovely lady about how cute Minster was, she asked the omnipresent question that always surrounds us when out. “Have you got a client waiting for him after his training finishes?” she started the rehearsed dialogue. She was shocked when I said he had been trained and was mine and said she thought that they were only for blind people. Here we go again.

In the last 20 months since having him I have been asked for my collection bucket as they thought I was a fundraiser, been quizzed by members of the public who become on the spot ophthalmologists, been ignored as a stranger talks to the person I am with instead of me (as if a blind person can’t talk) and numerous other things that are too legthy to go into. To be fair none of these have offended me, they have just intrigued me and made me think of how some sighted people think that people with sight loss look like? More importantly, is there a way that I can stop this from happening in the future? Here are some of the solutions my quirky mind thought up –

• Overdose on the blind stereotype by wearing dark glasses, use my cane alongside my odd-looking Guide Dog and carry a braille book wherever I go
• Pre record an audio recording stating yes, I am registered blind and give a brief answer to all the questions that I am always asked and play it as soon as the questioning starts as that way I will save myself so much energy.
• Get a Neon sign to attach to my head saying yes, I am blind and yes, he is my Guide Dog.
• Get a printed dogs coat for on duty Minster saying ‘I am with the blind one’ with an arrow pointing towards me.
• Teaching Munch to talk so that he can answer the questions as they may believe him more.
• Become vampire like and avoid going out until dark so that we don’t have to encounter many people.
• Move to a desert island and hope that no parrot ever mutters “are you training him?” so that we can live without question.

Or, we could just carry on loving it really despite our eye rolls that we now mirror in each other. We love meeting people and we will never tire of being asked the questions that people want to know. I think that this is a good thing as I think that these questions will be asked for a very long time.