Sunday, 27 September 2015

Challenging the Status Quo

I really have to make a point to stop deceiving self that I fit in publicly or privately, I don't fit in anywhere. The awful thing is it isn't anyone's fault, people don't deliberately ignore me they are apprehensive when they approach me to speak, I sense their discomfort and in turn they sense my embarrassment. In a nutshell people either avoid speaking to me or make any verbal exchange brief and move on. I've engrossed myself in politics it's a good outlet for the frustrations about my situation, politics controls everything including the laws that prevent me having more access to alternative communication methods.
In these days of technology and computerisation there's no need for anyone to be left out when it comes to communication but subsequent governments look at the issues and decide it's (a) an unnecessary expence to enforce the changes (b) an enormous administation headache for government and businesses alike.
Some 701,000 people in Scotland alone have mild to moderate hearing loss, over 67,000 have profound or severe hearing loss and some 5,000 plus people are registered deafblind though actual numbers are significantly higher. Bearing in mind few people are completely deaf and blind and that the age factor contributes to decline of one or both senses either mildly moderately or severly we are talking about an awful lot of people, mostly with previous full use of senses now struggling to keep up in a hearing seeing world. Interestingly of the accommodated figures for people suffering some form of hearing loss only 6,000 in Scotland use BSL.

So what about the rest of hearing impaired and especially those with vision impairment too? There are NO recognised alternative communication methods other than BSL. This means potentally almost three quarters of a million people out of a population of 5.5 million could well be experiencing some level of communication problems.

Electronic note taking is an option, it enables people with any degree of hearing loss but a small level of vision to read typed live dialogue and respond verbally almost as quickly as one does in a nomal conversation. The wonderful thing with note taking is it can serve many people at the same time via a projection screen. It opens up enclosed worlds giving opportunity to attend meetings, take part in community groups and organisations, a change to feel part of society and to contribute like everyone else.
Then there is deafblind manual...the equivalent of writing hand onto hand. Ideal for one to one direct contact especially amongst family and friends and so easy to learn it takes only minutes and a bit of common sense.
Other access issues involve Emailing. How many companies offer an Email address yet never respond to emails or take weeks to do so. This should be an official form of communication too. Then we have TV subtitling, given the number of people who struggle to hear and also subscribe to Virgin, Sky who offer non terrestrial channels with few offering subtitling, the same applies on Youtube meaning watching popular programs or films on TV or online is virtually impossible.


I've no idea what the total number of deaf, hard of hearing and deafblind is in the entire of the UK but if Scottish figures are anything to go by an awful lot of people are missing out on the most basic rights. Communication and participation. Time these people made their voices heard. Who knows, perhaps one day if people KNEW how to communicate clearly with me no one would feel hesitant or embarrassed least of all me....

Saturday, 15 August 2015

Friends

There's no doubt in my mind that had I still possessed my senses I'd be a completely different person to the one I am now. Pre sensory loss my life was productive a very comfortable and even a pretty much sheltered from the harsh realities of life, there was always something to do somewhere to go and plenty of companionship. I was active in the community but didn't really identify with some of the things I believed I was standing up for. It's pretty safe to say I wouldn't have become absorbed with the internet or spent so much of life on Facebook and Twitter. Deafblindness has redefined who I am yet without dual loss of senses I'd have remained in my closeted safe world ignorant to another side of life. Disability has brought me hardship, poverty, suffering struggling, isolation and pain but opened my eyes (hypothetically), to an enormous amount of positive things and incredible people, the sort who'd literally do anything to help others, people who give of themselves asking nothing in return.

My world today basically revolves round the computer its my outlet, my insight and above all the source of contact with incredible people from all walks of life, a wealth of nations and religions, each and every person I call my friend on the computer are people who have empathy, genuine care, do the most marvellous deeds, each and every one of them has a story to tell equalling mine or in some cases much sadder and far tougher.

Some Muslim, Jewish and Christian friends who work non stop to help others of every religion and crave unity and peace for all of us. The parents of disabled children who devote themselves to bring up their children and fighting for the rights of every disabled child. The carers who run support groups and raise awareness of every issue. Working and Middle Class people who despite differing lifestyles share the common bond of care devotion and decency towards all. Unemployed people who are out there every day trying to find a way forward to make a living and do some good at the same time. The list goes on. All these people some who I've been very fortunate to meet others I hope to meet and some I know I'll never meet yet all have made imprint on me and my life.

I love politics, history, theology, science, geography, genealogy, archaeology, the arts but it was difficult to find people who shared more than one of two of those interests until I discovered Facebook and Twitter I'm not gushing about the world of internet, I've also come across the more seedy people. Seen how this form of interaction can bring out the worst side of people who say the most vivacious things hiding safely behind a monitor, but when it comes down to basics there is no doubt in my mind the good people out there outnumber the bad.


I might have a chance of a hearing transplant and another cornea one although the cornea is only a small part of my vision loss problems. If both procedures or even just one turns out to be successful my life would change yet again, but if it did I'd no longer be that naïve person living in a sheltered world. I thought I was a good person who did good deeds before sensory loss but really I did nothing much, nothing near what I would do and can do given the chance. This new found resolve to be more pro active in the world if the chance comes my way is down to the names appearing in type on the computer.

Those people I've met and have yet to meet don't know how important they are and how they've positively impacted on me.  I really hope one day I can make a valid impact on other people and wake the world up, show those who are still as closeted as I was that there is ample room for us all, ample resources for us all and a better world for us all if we come together to build it with eyes open...    

Sunday, 14 June 2015

Out of Sight Out of Mind

It's nice to finally have a name to part of my sight loss. Fuch's dystrophy is when the cornea's fill with fluid which then causes foggy vision eye pain and other problems. It's more common in women sometimes genetic sometimes no known cause. I guess they work on the cornea's in hope of resolving that issue before tackling the dozen and one other problems related to my sight and lack of sight. Apparently they don't have a name for my multiple eye problems it's extremely rare. No doubt one day a smart Ophthalmologist will come up with a name for it but given it's rarity and the amount of curiosity I create amongst eye specialists they should call it Beth's syndrome.

Joking aside, a lot of simple things create huge problems now. I've gone from Masterchef wannabe to incinerating everything, I'm on first name terms with the local fire brigade thanks to my concerned neighbours who mistake the stench of charcoaled toast or a cremated chicken breast as a house fire. The fire chef doesn't mind the frequent call outs, he said the crews run a lottery to see who can correctly guess what I'll have burned. Someone won £20 for correctly guessing it was grilled tomatoes burnt to smithers.

I used to be pretty Handy with the needle and thread, surprisingly I still am provided someone comes round and threads the needle. There can't be many semi blind people who's adult children bring round things to be darned because they can't do it.

The garden needs major work done the cost of a gardener to do it all would be atrocious. A couple of people nominated me for 'Love Your garden' It revives me when I sit outside in the evenings or small hours just drinking in the fresh air. I miss my old home and garden with its herb garden and flower beds, this one is bare apart from two baby Cyprus trees and two apple trees which I planted last year. The previous occupants of this house laid pebbles along two side of the garden, not good for someone with unstable balance. For the past week I've been outside after midnight trying to move bucketful after bucketful of pebbles to the back of the garden and weed here and there. I've probably sliced up a zillion worms and transported an equal number of bewilder spiders across the garden, but what you can't see you can't feel guilty about.

Regardless of how difficult things are it's still important to try and keep some humour. No doubt the locals here think of me as an eccentric deafblind woman, not many people mistake an empty plastic bag blowing down the street as a small white dog or cat, smile then bend down to talk to it

Before I lost my senses one of the many things I used to do was coach and manage a boys under 14s football team. I only did it because there was no local team at the time, didn't know a things about football but grew to love it though I always preferred tennis, cricket and rugby. Now whenever I pass a group of boys kicking a ball around I shamelessly ask them to let me have a shot. They are always bemused but one will always line the ball up at my feet and turn me in the direction they want me to kick in. It's always a thrill when I kick the ball perfectly and sometimes score a goal, I giggle imagining the looks of surprise.
Gosh. So many things are out of reach now or at the least extremely difficult and it hurts like mad. But I still have things to be thankful for, we all have I suppose. It's just a case of reminding ourselves that on the down days and remembering tomorrow is another day...

Sunday, 12 April 2015

Coping

Real solitude is to be completely alone without visual or audio distractions other than the never ending droning and buzzing of tinnitus.  Rather than torture myself with the effort of trying to identify objects I retreat into my own unique world. Sometimes my thoughts are very logical and practical. I mull over world issues weighing up all possible causes and solutions though of course those solutions are purely fanciful at best or ridiculous at worst.

I've always had a healthy imagination and create marvellous plots and story-lines for books or films, my imagination runs from science fiction to romance and comedy but alas my writing skills and vision don't allow me to put all my ideas down in written form but I'm, sure some of them would be original and appealing.
Then there's my inner self questioning on how to deal with the realities of my life as it is. I don't look ahead or visualise myself anywhere in the near or distant future why torment myself when my prognoses is even bleaker than my current situation. Instead I attempt to visualise my family and friends, my condition has given me enormous time to understand myself in ways I probably wouldn't have done in a normal busy hearing visual world and a bigger bonus is it's helped me understand other people too.

One of the striking things about humans is that we all individually have different coping mechanisms that govens how we deal with disability bereavement and pain. Coping better than someone else doesn't make us better than them it just beans our chosen methods of coping are different. Physical disability quite often triggers mental health problems particularly depression anxiety and stress. I've seen so many super people who in the surface cope well with things only to fall apart at a later stage because the pretence of coping takes it's toll. Like the deaf person who pretends they can hear but miss almost everything, We seem to have a fear that people won't understand or aren't interested if we talk about our problems our pains and our fears and yet there;'s hardly a person alive who hasn't experienced one or the other of those things.

My way of coping is to force myself to think beyond the pain the hurt the limitations. It isn't an easy thing to do especially when pain is at almost unbearable levels but I personally found a way to inner peace through meditation and prayer. Not everyone can find their inner peace and acceptance through prayer and not everyone believes in it. I don't pray for a cure for myself nor pray for anything specific for myself other than the ability to cope and keep on coping. It works for me but but of course everyone must seek their own method.

I've somehow learned to appreciate the simple things more than I ever did when I could hear and see and didn't suffer pain isolation and loneliness. The brief moments when tinnitus isn't so loud and overwhelming. The moments when my eye pain is less sever and when I wake to find I can still see a tiny bit no matter how obscure and unfocused everything is.
I focus on searching for a tiny speck of humour in decidedly humourless existence. Ridiculous things can be hilarious in retrospect.  Dropping a square of chocolate on the floor spending 20 minutes sweeping hands across the floor hunting for it and coming in contact with a very much alive spider. Knowing the said spider was as startled as me because it jumped up, but I can't see or guess where it jumped to, so I spend ten minutes running round the house almost stripping naked bumping into everything waving arms legs and head madly in case the spider landed one me!  The image is certainly hilarious.

II have times of self pity too but I fear that almost as much as anything because its a destructive emotion and the path is always downwards with self pity.

A few people I've known have given up the fight for survival and taken the option to end it. If only I could have shown them how to cope, if only they'd opened up more top the people around them and if only those people had listened without judgement.  We owe it to ourselves and our families to seek help when depression is at its zenith and those around us need to be aware of the need to support each other and encourage each other to speak about issues.



Life for me is far from perfect it can be living hell but it still has those precious times when it's very beautiful, one day at a time...

Monday, 12 January 2015

One Day At A Time

The good days grow less frequent, the world world I once knew is disintegrating trapping me in a strange alternative one shrouded in silence where shape form and colour don't exist.  Some days are extremely difficult draining me mentally emotionally and physically battling to cope and adjust.
Times of inability to read lips, even if only the occasional word and inability to read and write on the internet are particularly bad.  Sometimes a good day will mean only four hours of visual clarity but even those hours can be fraught with difficulty and intense efforts to focus. There are times when I feel panic and logic goes out the window, its a form of self torture to sit at the pc unable to distinguish words images and letters and the same applies with reading lips. Those are the times the only thing to do is lay down and close eyes.

My blog is my open diary a place I hope people visit and read my thoughts and experiences gaining a little insight . to my condition. My Facebook and Twitter pages are rooms filled with amazing abet unseen unheard friends whom share stories, joys and sorrows with me and I them. Dear friends who never judge me or suffer embarrassment because I can't understand them or them me. The internet is my home within a home where everyone is equal without prejudice.

I'm a sentimental dreamer always have been and it's served me well as a form of escapism. The downside to closing eyes and daydreaming is not knowing if anything will be there when I open them again. As a result my sleep patterns are erratic but sleep is a gateway back into the normal world where everything comes to life hearing and vision loss don't exist replaced by vibrant memories of both.

As I stand at the top of a small hill surveying the world below me I stretch my arms towards the clear blue sky with it's dazzling golden sun. The scenes below the hill resemble an artists pallet filled with kaleidoscopic colours. There's a field of rich green yellow savannah grass and golden sheaf's of ripe rye. Sturdy long stemmed pale blue and white orchids bloom alongside tulips of every colour. at the edge of the field lays a small tightly packed wood filled with trees bushes and shrubs of every description and tone of green, deep juniper and avocado greens mingle with lighter shades of olive and apple. A low stone wall borders the field dividing it from the next one. There the lush grass is darker and sparser inhabited by a large flock of sheep grazing contentedly.

A variety of birds fly back and forth between the fields and wood gathering food, some pausing directly overhead cawing deeply or caling out to each other in tuneful song.
When a warm gentle warm breeze drifts through the air the field below comes alive with movement. The grasses, heads of rye and flowers start to sway back and forth colours blending together as one moving in graceful harmony like a heavenly orchestra.

I can never put enough emphasis on how people take things that are always there for granted including the senses. It's good fortune to be able to recall sounds and images in the minds eye, however it can't compensate for actually seeing and hearing. 

Sometimes the sense of bereavement induced by disability can be dealt with but like any bereavement the feeling of loss never completely fades and I'm sure almost everyone with or without disability will understand what I mean.
One stage of bereavement can be resenting others who still have the precious things we've lost yet don't value them as we did. That thought leads some to say "why me" but in my opinion that statement is pointless and negative leading to self pity and potentially self destruction.

A particular sadness of mine is that my grandchildren have never seen the person I used to be. The one who'd play games. read and tell stories, loved to help with homework or paint and teach to read and write. Talk and listen to them understand when they cry and console them and much more. Things the other grandmothers can do. As a result these small children view me differently and find it hard to connect with me. Perhaps when they are older someone will explain to them that the person they now see is not the fun loving, laughing. adventurous person I used to be.    

Rather than 'Why me'  I still maintain 'why not me'
when all is said and done I can't deny I've been fortunate and had more experiences in life than most could dream of. Not always good ones, some extremely challenging and sad but that's the process of life and living.
However it doesn't stop me feeling angry at times when ignorance rears it's head and people shun me or treat me like a brainless idiot assuming loss of senses means loss of intelligence.  One day I may shout  "Hey you I'm standing here don't pretend I'm not. I didn't choose to become trapped without senses but you had free choice in becoming ignorant." 
Oddly enough those ignorant people are the ones who make me determined to keep shouting and fighting for my rights just to spite them.

So days like today and yesterday are rarities and the knowledge they'll grow more rarer hurts, not knowing how long the vision will last or what will become of me is a burden. But if I allow myself to dwell on these things I'll lose time that really can be better spent. Someone said time I went into Sheltered Housing as I can't expect my children to take care of me. That's true but I'm not ready for that, time for that is when my vision has gone completely, until then despte the struggle I'm stay right here and keep the small bits of independence I have.

I love the word determination and it suits me, it's impossible to know what tomorrow will bring but that applies to everyone not just me. 'Que sara sara.' make the most out of today as tomorrow comes quickly enough...

Saturday, 18 October 2014

The Self

We each have a concept of self such as how we look, act think, response, but our concepts rarely match the view others have of us. By judging ourselves harshly we fail to give ourselves credit for our many positive qualities. It's also common when others form a concept of us they too often overlook our positives in favour of negatives.

You may ask why I've chosen the psychology of self in a blog about deafblindness. Lack of interaction with others whether it's verbal or BSL lack of any form of direct communication or extremely limited communication and other mental stimulants, leaves a huge void and a massive amount of time alone with the thoughts.
I was always mentally active and inquisitive about everything, relished deep meaningful discussions and debates that some would call boring. I'd also lose myself for hours engrossed in books or outdoors studying everything. 


Sensory loss makes those things impossible and prevents or greatly restricts ability to interact with like minded people so we withdraw futher into ourselves.
On the surface I'm competent strong and outspoken, inside I feel like a rabbit trapped in the headlights with no means of escape. It's a natural progression to become a deep thinkerm it;s the only compensation we have. It doesn't make isolated people more intelligent but does mean they have all the time in the world to mentally question everything if they choose. .

One of the most annoying characteristics I've developed is to whisper or shout, I'm assured the tones of my voice don't have the high pitch associated with deafness but I can't gauge what level I'm speaking at. Almost no vision means I can't tell if people are talking and rudely interrupt time and again, or assume I know what the conversation is about when I don't and blabber on about something no one was discussing. Outsiders assume I'm rude and ignorant and those who should know better also judge me. It all adds to the exclusion and are negative extremely unintentional characteristics . 

I set a great deal on personality and intelligence. Much of my life pre sensory loss was spent moving from location to location, country to country not forming roots or lasting friendships. I never quite learned the art of general chit chat as a result. Even with senses it's difficult to find people who share that eccentric love of everything, without senses It's difficult to find the balance of things to discuss even with family so it all adds up to isolation though no ones fault. .

My late father was massively important to me. though in my teens he said something some consider cruel “darling you must accept you don't have good looks so concentrate on your intelligence and personality and understanding yourself" I never viewed the statement as cruel but it did affect my confidence in some respects but also made me more self aware and more aware of the importance of trying to understand others. It gave me the determination to work on my positive and negative qualities and accept both. 

Family, work, community meant everything to me, as we all do I've made mistakes but I've never been reluctant to acknowledge and learn from them. 

I'd like to believe the endless time spent in my solitary world self analysing has made me see my positives and negatives and accept both equally. The word 'try' is a fundamental part of my life. Try to do what I can, try to improve my situation or make the most of it. Try to understand others and make allowance for the fact people without sensory loss find it difficult to understand the affects and the need to try harder to break down communication barriers.

In conclusion understanding self is necessary in understanding others and helping them understand our needs too. We shouldn't be to critical of ourselves or others. developing greater awareness prevents harsh self judgement and incorrect judgement of others.

Either enforced isolation has driven me completely mad or I've actually developed better insight without senses. I'll leave judgement to you...

Wednesday, 3 September 2014

Vibrations,

With non existent hearing and ever declining vision my existence becomes more and more dependent on other things, namely vibration.

We describe some people as spiritual as in seemingly more aware of life and more tuned into the simple motions of emotions of existence. Being something of a loner throughout childhood distanced me from the usual forms of childhood interactions. I found great comfort and fascination in natures natural sights sounds and movements. Sometimes I'd become so engrossed in studying touching smelling and feeling things I'd forget who I was and become one with everything around me.

I developed a love of nature and reading. History and science were two favourite subjects and have always remained so even to this day when reading books, even large print books is almost impossible. As my hearing declined then failed completely and my vision began to deteriorate leaving me as I am now with the most minimal sight my sense of awareness grew and grew.

I wonder if scientists have studied sensory abilities of people with acquired deafblindness. I'm sure they'd discover some surprising results. I emphasis 'acquired' rather than born with dual loss of senses because having had an lost senses is on a different level to those born without senses.

Ever since I was a child I loved vibrations, placing my hands on the ground feeling the vibrations of a kangaroo hopping through the bush, believe it or not that simple whacking of two strong feet and the tail create a vibration that can travel quite a few yards.  Trains only passed by on the track once per month, on the expected day I'd sit with my feet on the track waiting on the vibrations. I became quite skilled at detecting faint movements from the train even when it was still a good distance away and beyond vision.

Like almost everyone with dual sensory loss I can correctly identify many everyday vibrations, Cars, buses, lorries, planes, trains, music. Washing machines, central heating, fridges and freezers, pipes. Vibration is a form of audio compensation.
But I've realised as time has passed that sense of vibration has gone a step further and become extremely highly tuned and it's becoming very clear to me I'll detecting vibrations from extemely large distances especially underground.

Scotland like everywhere else has minor earthquakes now and then. Although none have been recorded in close proximity to my area I've been keeping a note of date and timings of various strong unidentified vibrations to my surprise I have indeed picked up minor earth vibrations from distances of 70 miles or more. Even more surprising I've discovered I can detect movement from the shale (fracking) mines in Falkirk almost 20 miles away.
I've tested these things by going outside and standing barefooted on the grass in the garden or even walking to the end of the road in the middle of the night to feel the ground with my hands and feet, it sounds peculiar and if the neighbours saw me they'd think I was quite insane, I'm not and it;s true I am picking up these movements.

Once science maintained everything except empty space was made from matter, matter (solid mass), is made from atoms, protons, neutrons and electrons when broken down these things are simply nothing more than energy and vibrations. It's a long held belief that we as humans only use a specific percentage of our brains, while scientists know a great deal about all sorts of things they haven't yet concluded the full brain capabilities, it's quite possible what I'm experiencing is an ability we all have that has become defunct over time as we've developed dependence on sight and sound to guide us through life.

Though it doesn't always happen sometimes when I've had to give a blood sample I've felt the vibration of the blood flowing through the vein.

Interestingly my senses of smell and taste have increased dramatically over recent times too. I can detect smells no one else can or long before others do and the sharp sense of taste has had impact on the foods I now eat. I really wish some bright spark doctor or scientist would investigate people with enhanced senses, it could lead to some fantastic breakthroughs in understanding the human body and brain.
As for the vibrations, sometimes it's a pity I'm single. I'd have loved to have told some loving chap 'darling I felt the earth move...'