There's always those sort of days when life is good. Days that appear comparatively normal doing the simple things that ordinary people do, getting out and about spending time with family and laughing at silly things or just laughing for the sake of it.  Without laughter and communication with other humans life becomes intolerable. .

There's always the other sort of days too and those are the ones that seem to be growing more frequent, days where simply existing replaces living. Where finding a reason and the strength to remain optimistic against the odds is a challenge and a half.  Life should be treasured life and blessings counted, but there are times when even the strongest grow weary, when the odds are stacked high against us and when the simplest thing becomes a struggle to far. 

Last week was full of days like that.

Thousands will identify with the frustration of being at the mercy of the welfare system where basic things can't be replaced, where we do without because there's no alternative and we sit silently praying nothing else breaks down and needs replaced any time soon. Then there's bills, fuel, food and all the rest and for many the only option is to borrow from credit companies some of which charge triple the cost of goods. These are the things that are familiar to so many people today. But for those like me there's added complications when certain bills can't be met on time. For example internet/phone companies.  BT offer a service for disabled people whereby the service for phone/net can be kept open in cases of late payments, other companies are not so understanding. Mine isn't despite being a long standing customer services are cut leaving me with no means at all to contact the world outside, to add insult to injury most companies charge a £10 late payment fee which can add up to £120 per year for someone who can only pay bills on time if they match benefit payment days. Days without access to anything is horrendous particularly when alone. Families can't always be on hand and if they are it's difficult to ask or expect the level of help I need on bad days. Voluntary work is dependent on guide services and the stability of my limited sight, its been quite unstable recently, it means when alone as I am increasingly more often nowadays I can't type for more than a few minutes at a time and some days not at all, with almost no ability to do anything constructively and no means to get out, no company or any means of communication with the outside world. 

I suppose it would be difficult for most to imagine my world on bad days and weeks. Unable to cook properly, read, write, contact family, visit friends, go for a walk or even undertake mundane tasks such as ironing. The restrictions are endless but the isolation is worse.

Sometimes the only escape is to sleep or attempt to sleep. Life is so precious and should be lived not frittered away alone and cut off from the world.  Retaining the belief that things will get better is vital and completely losing that faith isn't an option, but sometimes keeping optimism in a system that doesn't see the needs of the vulnerable and turns a blind eye to calls for help is almost impossible...

Saturday 14th january 2012

Dear diary...Well it does seem as if I've created an open diary with this blog, and every time someone reads it and shares it even though it's mostly uneventful, and somewhat badly written it still acts as an outlet. everyone who knows me also knows I grudgingly accept being disabled but don't do it quietly, at least not while there's so much I can explain to people about dual sensory loss. I hope one day to get sponsorship to allow me to speak to medical undergraduates, everyone in the health profession and every other spectrum that deals with the public. Its not easy to reach out and get people to listen but those who do and those who read this diary, the thought that anyone is willing to show interest in the restrictions of dual sensory loss is a huge boost.

Like everyone else with disability I've experienced those instances when strangers have made rude remarks, treated me like an idiot or laughed as I pass by. I don't hear the insults or see the faces but still know instincivly when someone is sending out negative vibes. Its peculiar in a way because there's no sixth sense yet a lot of disabled people particularly those with high sensory loss really seem to be able to access vibes and emotions of those round them far better than the average person.

I've mentioned a deaf/blind mute man before and met him again yesterday. He's selective about who he likes to use dual finger maual onto his hand. He'll brush people away if he doesn't feel compatiable to them. He senses even before they touch his hand that he doesn't want to communicate with them. Its an amazing use of senses and something thats overlooked with our high dependency on vision and sound.

Touch and smell play a huge part in daily life yet most people don't give these senses a second thought. I easily distinguish the different vibrations of a bus, car, lorry or bus passing on the main road a short distance away and it's the same with planes, knowing if they are coming into land or have recently taken off. In a small way touch and vibration compensate for loss of sound.

Smell is remarkable. In the early pre speech days of homosapins smell and touch were vital assets. It wasn't looks wealth and certainly not chat up lines that attracted. More often than not it would be smell. With todays modern assortment of body sprays, perfumes and household substances you'd think the ability for natural scent detection would be over powered. Not necessarily so, I think it's that inbuilt sence of smell that lets me know when someone has been negative towards me and how the deafblind mute man can accept and reject people automatically.

Knowing we have other unscathed senses that though can't replace missing and damaged ones can help compensate just a little. If ever you were to meet me outside and my nose twitched it wouldn't be me impersonating Bewitched or having an itchy nose, it would be my automatic senses at work!!

I tend to write about so many different things because there are some days when I don't have the chance to participate in society so simply writing this such as; 'got up, waited for vision to settle, got burnt cooking, banged head on cupboard door, turned on PC, tripped over cats sat talking to self and waiting for someone else to communicate with me, and waited for the clock to complete its cycle,' all sounds so bland but the truth is...they and yet more things are the bland, dull and frustrating events of every day life for the deafblind...

Friday 13th January 2012

What a busy day and every moment was great! It started with the weekly visit from my support worker. She's exceptional. Usually when I have to depend on people to make my phone calls and organise things they do so reluctantly because they know it means endless interruptions with me reminding them what to say on my behalf. Not so with my support worker who instinctively seems to know exactly what's needed. The best thing about people like her is not just the fact she undertakes necessary tasks for me but also that she listens and shows genuine care and interest. It's often very difficult if not impossible for families of disabled people to fully appreciate needs and particularly the needs of those with acquired problems. When a family member previously able to do things changes and becomes dependent, especially those with invisible problems it's difficult for families to recognise and accept changes and my family are no exception. I'd always pandered their needs and took pleasure cooking, cleaning up after them, making small talk and all the other things a mother and grandmother does.  But things have changed, I can't see the clutter which is now potentally dangerous for me, I don't see the smudges and spills, can't cook without risk of  burning me and the food and they completely forget to include me in group chat. It's not deliberate oversight on their part or neglect its a case of not seeing the differences in me and not wanting to accept mum now has limitations. its a very natural thing with families.  

When someone develops a  disability the entire family needs help on awareness, acceptance and adjustments.  Sadly there's very little help and disability education available for families out there. .

The afternoon was spent in a secondary school speaking to 4^th year students. Selecting volunteers to try out ear defenders to muffle sound and a blindfold then getting them to walk round with only a stick to help is always a good way of breaking the ice and giving a small taste of what it feels like. As usual when we first entered the class the teachers assumed it would be the guide speaking and not me, after all they don't imagine a deafblind person will be giving the talk, it's the same old problem that occurs everywhere I go, it irritates me at times but I've learned not to get offended.  Glad to say by the time the lesson was over the teachers themselves had learned a lesson in not making assumptions and not overlooking someone because they are unsure of what approach to use.

Usually I ask the pupils 'if they saw me with the stick and glasses outside trying to cross a road would they help me?' usually I get a resounding “YES,” today however because the pupils were shy only one hand ventured up. I explained about sensory loss affecting balance in my case I can stagger around like a drunk on a Friday night, I remove the glasses, put down the stick and demonstrate my walk then ask again if they saw me without the stick and glasses would they help. This time they weren't shy in yelling “NO.” It's another way of showing how wrong assumptions can be. The dark glasses do protect me from light but also serve as a visual for others and the stick applies in much the same way.

Its a tremendous feeling when you know people have listened and taken on board what you've said and even more so when you know they've actually enjoyed listening. If this can enlighten just one person and make just one person understand disabled people are no different from them. Not just dual sensory impaired people but all disabled people then I have done something good and worthy.

Following days like today I can always sleep with a lot more ease. Not only was my vision stable and not causing pain but I did what I set out to do, enlighten people and feel I'd contributed to the world in some small way. What a wonderful feeling that is...

Thursday 12th January 2012

I love writing about positive things and it's been a pretty positive day and evening all round. These are the times when limitations don't stand in my way and I achieve things. Probably not big things to the average person, things like arranging to see my granddaughters headmaster in person, usually I never visit the school, people who don't understand anything about dual sensory loss make assumptions to intelligence and become distant or patronising. Finally the school has agreed to provide some communication help which means I'll be almost like any other interested carer or family member. When I can make progress and finally get the message of rights across it always brightens the day. My persistent emailing also paid off when I helped someone get results with a housing issue, it's not quite the same as back in the days of employment and decision making but in some ways doing things on a voluntary basis is even more rewarding.

So glad the schools and colleges are back after the holidays, it means I've got constructive things to do visiting them and showing the world what disabled people have to offer. I've been to some great schools and colleges, some of Scotland's finest. There's a mistaken concept that private schools and young people from better off families are aloft and uncaring. The pupils never cease to amaze me with their interest and genuine concern often remaining behind after class to ask things. And it shows the young from all walks of life have hearts and sometimes just need to learn what life can be like for others. It gives a certain amount of hope for the future showing that with the right approach problematic pupils and wealthy ones respond positively.

For the remainder of this week and part of next I'll be working in a secondary school, I love nothing more than when teachers are proved wrong about pupils. Teachers will say some of  the pupils might be disruptive and laugh at me, they ask me not to take offense and assure me they'll remove any problematic pupils. It's never happened because not once have I found a class with a disruptive disinterested pupil, quite the opposite. They listen and we laugh together, later on I'll tell them that they've learned a good lesson of laughing with people and not at them. it's great to see them digest that and understand. 

When I'm asked back to a school after several visits they usually present me with something. I've got a collection of hand written letters from pupils, paintings and drawings, things made in the art classes. It shows the schools really take interest and if only one pupil out of every 20 remembers the visit from a deafblind woman and remembers all I've taught them then I've succeeded in my objective. 

The strangest place I've been asked to give a talk in was an adults lip reading class. All but two of the participants were deaf and used sign language, I don't use that and my skill at it is highly questionable. My note taker had difficulty understanding what most of the participants were saying because of speech impediments. They had difficulty reading my lips and didn't know dual finger spelling, it was a disaster in terms of giving a talk but everyone saw the funny side and it was super to see people can laugh problems and not take it to seriously.

Primary children come up with classic questions and sometimes I have to hold breath to stop laughing. Strangely enough children all over seem to have the same sort of image when thinking of deafblind people, some of my favourite questions are:-

“Can deafblind people drive?”

'Technically no, but if they did they'd be better drivers than some of the people on the roads.'

“How do deafblind people eat dinner?”

“They use knifes and forks.”

“How do they open doors?”

“They use the handles.”

The next question came from a very mischievous looking boy;

“If a deafblind person had a guide dog and someone tried to rob them, would the guide dog bite the robber?”

I eyed the boy at close range and thought out my reply; “Well...I can't tell you that it's secret, the only way anyone would find out if the dog would bite and how hard it would bite would be to mug the deafblind person.” I think he discounted the idea of trying to rob a deafblind person with a guide dog!!

The talks themselves are very serious and hard hitting, getting the message across that one day sensory loss could happen to them or someone close and leaning new ways to communicate is the answer. Bringing home the danger to sight and hearing in the modern world of loud music and close proximity to TV screens and monitors is another important point.

Above all when I visit schools I like to leave them with something positive to think on. I always tell them to stop and think.

If someone who can't hear them and can't really see them can stand in front of them and speak even if they have no idea iof anyone is listening or watching,  then they themselves can do anything, never say this is to hard or I can't. For disabled people the world over it's the same story - It's not lack of desire or lack of self effort that prevent us achieving it's society...

Tuesday 10th January 2012

I like to think I'm a tough old girl and few things alarm me other than the usual concerns for family or when I learn of man's inhumanity to man and his wanton selfishness. I'm no exception when I have those endless sleepless nights where the mind refuses to rest and thoughts churn round and round coming up with the worst possible scenario's to everything.  There's also nights where I forcibly stay awake by choice particularly when my sight has been stable, then I'm reluctant to sleep in case my good fortune expires in the morning light.  Nights like that allow me to type away till my heart is content putting all my thoughts in print. Sometimes I write stories inspired by life events or pass the hours writing endless philosophic theories each containing my imagined solutions to the vast complications of  life.

I love using words and writing is a joy even though know my style of writing leaves a lot to be desired. Words are wonderful means of expression whether spoken or written and  I love the concept of such a vary array of languages and expressions those fascinating dialects and slang's that only natives of an area can interpret. There's a word for everything and words allow us to express experiences, thoughts and fears, anger and pain and every other emotion. But not everyone realises spoken words aren't always necessary to communicate, sign language and dual finger spelling prove that, more astoundingly is the fact friendships and close relationships can be formed without use of spoken or written language and without the accepted sign languages either.  

 

Years ago I met a young African family who'd moved to the area because of it's proximity to the local university where the husband was attending. The family consisted of the husband wife and three children. Both the children and their father spoke and understood English but the wife had no grasp of it at all, in a prominent English area it made her an outsider. That didn't prevent our children becoming good friends and playing together every day. The mother and I would stand outside watching the children play and exchange polite smiles. One day when I was indoors my son fell over and cut his knee, the African woman scooped him up and took him to her house sending her son to fetch me. I found her cleansing my sons knee murmuring reassurances in her own language. She never did master English and I didn't master Afrikaans yet we formed a wonderful bond and endearing friendship based on smiles frowns and gestures, we'd laugh outrageously at each other and instinctively knowing what the other meant, she'd cook for my family and me for her's, we shared some precious times together.  She was a wonderful woman and taught me lessons about friendship, humanity and how communication and cultural differences don't mean barriers.

Recently sleeplessness has been quite profound and the source has everything to do with the real frightening prospect of benefit cuts. I've always rose to a challenge and come back fighting regardless to what life has thrown at me, and it's has indeed thrown a lot over time, but this time I'm starting to wonder if I have finally been beaten. Already many aspects of life are a struggle and I don't say that lightly. Disability, as every disabled person will testify, entails various additional needs and additional help requirements. But with all we're forced to deal with it comes to the point where we ask 'how much more are we expected to take?' Aren't disabilities enough, isn't dependency enough, sigma, prejudice, humiliation, inability to help ourselves and do simple things for ourselves. Pain and fear, the list goes on. Those who live with disabilities are survivors of the earth dealing with things able bodied people couldn't imagine. Sometimes I have the urge to scream at the world 'for gods sake don't increase our hardship, don't put additional financial burdens on us limiting our help even further making even the smallest thing such as a trip outside or a new disability aid an impossibility.'

Amongst the haunting thoughts that run through my mind on sleepless nights I now have the image of yet more old sick and helpless people dying in sorrow and neglect. More images of housebound disabled people unable to meet the cost of fuel bills and food bills let alone anything else. And people like me unable afford phones or internet connections that give the last remaining connections to the outside world.

Every man is born with a conscience, only the wise and good choose to heed their conscience...

Monday 9th January 2012

The saying “silence is golden” has a wealth of meanings but silence isn't always golden, in fact sometimes it's the opposite. I've had many moments when silence is been oppressive. Sometimes it can seem almost like living inside a thick bubble. The thickness distorts everything outside making it impossible to make sense of images, sound can't penetrate the bubble either, it can make the world seem such an unwelcome alien place, the only safety is to close eyes and forget the bubble and silence. With eyes closed loss of hearing and vision don't count, memory can trigger sounds we once heard and hold images of people and places. Memory is an amazing thing, provided I have help sorting things out and have someone on hand to check quantities and things I can still cook within reason. It's the same in the car much to the frustration of whoever is driving, I'll say 'take a left or second right', occasionally I'm right and memory pays off but more often we get lost courtesy of modern road upgrades! Musical memory means if an old song is played I can recall the sound of instruments and voices, of course I don't remember the lyrics to every song but it's great fun if I do.

On a visit to my granddaughters school they forgot about me when the fire alarm went off, leaving me the only person still on the premises. I've sat on an empty train after the other passengers had disembarked following an announcement the train had broken down. Tradesmen exploit the fact I can't examine completed work and often don't do the job properly or worse give verbal estimates

then maintain 'I misheard them' and bump up costs.

One of the most frightening experiences I've had was when at home alone. Things had been tough and I was suffering stress with the usual stress related symptoms, increased heart rate dizziness etc. Recognising my problem I just wanted reassurance and someone there to listen. My local health center allows me access by email to make and cancel appointments but nothing else. Disabled people can have access to a panic button but they require use of hearing. An alternative is an emergency button that sends an emergency team directly to the home. In this case it wasn't an emergency, I didn't have one of those buttons and just wanted someone to help me calm down. For people like me with no hearing and minimal sight nothing exists to let us have direct contact with health providers. If I'd had an emergency email contact it would've made so much difference someone could've mailed me back and offered that little bit of reassurance.

I'll never forget that day or the feeling of utter despair, fear and helplessness.

The same thing applies with various government departments especially those concerning benefits. If someone contacts them on my behalf they demand to speak to me personally, I usually take the phone give my details and hand it back to whoever is making the call for me. 9 out of 10 times the department maintain "they can't speak to a third party therefore cannot process my request."

Doctors surgeries are a nightmare too. Although they now willingly provide note takers for consultations they don't allow appointments (urgent or otherwise), to be made after 8.45am. I can't use the email appointment service if I need to see a doctor soon or within a day or so, they maintain they don't check emails regularly and by the time they do it's way past their appointment window, it's not always possible to have someone on hand to phone them before 8.45am. It's a lose, lose situation.

The threat of benefit and disability cuts is alarming and on top of the inequality and humiliation experienced by dual sensory loss people and other disabilities it seems a bit to much and so very unfair. It's about time the system realised people don't choose to have problems, but the system deliberately chooses to ignore the needs of people with problems...

People often ask why I'm so passionate about politics. My diary isn't about politics but it's impossible to exclude it when the subject controls everything we do and can't do. When life gets a bit much and there's a risk of feeling down I always find the best way is to divert thoughts off self and focus on other things, lets face it, its attitudes and policies that make life so difficult for us all. With the right attitudes people would suffer less, have greater acceptance, easier access to things out of reach but taken for granted by the majority. Being accepted is such an important thing yet it seems in some way or another half my life has been spent battling for that and not just through disability.

Growing up in different places was a wonderful experience but unsettling too, there was always differences. I always had a different accent to the rest a different colour or culture, different dress only and only a limited few people ever let me feel I fitted in, its exactly the same with disability. People make all the right noises of objection when they see or hear of people suffering prejudice but regardless to how they sympathise it's impossible to understand what being different is unless you've been in that position. For example the child who's bullied because they are fat, even though the reason might have nothing to do with overeating, usually there's always someone who'll try and befriend them and any friend in difficult circumstances is worth so much, but that friend can't understand what the bullied child is going through but its impossible unless they have experienced it too. That's where the importance of acceptance and tolerance comes in. Its the same  story of everyone who is perceived as different for whatever reason.  Acceptance is such a big thing, being accepted for who we are rather than excluded because of physical things and tolerance can change everything.

We all dream of finding that one special person who doesn't see differences but accepts unconditionally and there's an awful lot of people out there who do that, see beyond physical limitations and love regardless. The prospect of high level dependency isn't something anyone wants to think of but millions have no option, those wonderful people who devote themselves to a partner or spouse dealing with ceaseless caring without complaint are some of the unselfish admirable people on earth. My general health is quite good, my life expectancy is good too, but my dependency rate will at some point in the not so distant future will be extremely high, more to the point my communication skills will be almost non existent. Its not self pity, its realism when you can't discuss simple daily events, talk about the news, who said what, talk about all those little things partners talk about then it takes the idea of a relationship into a whole new spectrum. Deafblind people do have relationships they communicate with each other and quite proficiently too, but its extremely unusual for a sensory intact person to be able to cope full time with all the needs and shortcomings of a deafblind person. I suppose most disabled people feel they wouldn't want to impose on an able bodied partner, it's a horrid thought and one I wouldn't consider lonely or not.

Everyone aims to hold onto as much independence as possible for as long as they can, so keeping an interest in politics and continuing the quest for acceptance and tolerance and more compassion from the very top would really set the way for everyone else...

As a treat my grandson and I went to the cinema today. 

Last year I obtained a cinema ticket designed for disabled persons allowing free entry for the card holder or a adult carer accompanying them. The photographic cards are valid for one year, the specification doesn't cover registered deaf persons or deafblind. The card costs a minimal amount and is valid for one year, however this one had expired. I used to enjoy frequent trips to the cinema but over the last few years its been out of reach like so many other things. Size of screen doesn't prevent blurring and loud sound systems are useless, all in all cinema visits are useless, but like I say it was a treat for my grandson. Because of the expiry they demanded I pay full admission charge, it gave me the opportunity to argue the case and bring awareness of dual sensory loss to the management. You wouldn't pay full price for a three course meal in a restaurant if they placed empty plates in front of you. They relented and we only had to pay for my grandson.   Cinema's are expensive for anyone, add taxi fares and cinema snacks and your talking a lot of money. It annoys me when I'm a regular taxi user and spend a large amount of Disability Living Award on fares yet some drivers refuse to accept disability reduction cards claiming they don't have the paperwork needed. The cards allow a £3 reduction on fares and have a limited amount of use per year, run by local councils the scheme can be a huge asset but acceptance of the cards should be regulated. Cinema charges yet another example of how the unique problems of dual sensory loss isn't taken into consideration. I don't think I'm making a rumpus drawing attention to the act anyone would be reluctant to pay for something they only have partial or almost no benefit from. Its important no disability should be overlooked and not accorded equal fairness in the area's needed.

Believe it or not despite full deaf and blind registration I don't claim high rate DLA. Initially the diagnose was part sighted and deaf, middle rate award reflected that. But over recent years with several unsuccessful operations and continuing deterioration registration was changed to blind/deaf. High rate would enable me to do more things, get out more often and pay for more equipment I desperately need as well as helping costs of hiring tradesmen to do repairs, redecoration and modifications my home needs. Due to the current financial climate and despite encouragement from the Advice shop and various other sources the advice has been not to make a high rate or mobility claim. I'm pretty good at arguing my case and will continue to do so but according to sources with threats of welfare reform I could well end up losing some of my current award rather than gaining anything. There's so many organisations out there trying to protect the rights of the vulnerable, but there are few if any out there trying to safeguard and improve life and rights for deafblind people...

Friday 6th January 2012

I had a lot of trouble with my vision earlier today, is so frustrating especially when even the smallest pit of light is intolerable and my eyes hurt. The hours drag by with nothing to fill the time, wish I'd learned to knit, how hard can it be clicking away with needles, a fixed amount of clicks per row and nether a care if stitches are dropped. Given the crazy trends around today I could create multi holed scarf's, people with vision have created worse things.

People like me can't even use text messaging on mobile phones, type talk phones are obviously no good either. I heard of a specially adapted phone initially created for the blind. The larger screen and buttons mean it's possible for some deaf blind people to use. The cost of £2,500 puts it out of most people's price range. If you want to hear and see or communicate there are so many things on the market to help, but in each case cost is outrageous. RNID and RNIB only provide limited amounts of equipment, employment laws mean such things must be provided but the employer. The truth is firms and some charitable companies only give paid employment to a limited amount of disabled people. One deafblind charity only employs two such people, both with mild to moderate dual sensory loss. There's an awful lot of highly educated disabled people, some obviously can't work but those who can would love the chance of a job that used their specific skills and especially one in a field that benefits from first hand knowledge and experiences. Although I love the voluntary work I do, sometimes I think its slightly unfair when I put in the same hours as the rest of the team and give 100% commitment yet they are fortunate to be on the payroll while I'm not.

Thankfully by this afternoon I could open my eye again. I took the opportunity to fire off half a dozen emails, two trying to promote Touching Lives project, one to the local council regarding an elderly neighbour who desperately needs a wet room and the rest to various MP's who no doubt hate me and file my emails under trash.

Finally one of my grandsons came to stay the night. Like most of my older grandchildren he loves learning about everything, it gives me the chance to talk about my favourite subjects.  Like most of my conversations these days I did the talking and he listened. The joy with grandchildren is they don't care if I misunderstand them, they patiently repeat themselves or try to use dual finger spelling, they seem un-flustered and more relaxed about communicating than most adults do. The relief this brings is best described by imagining a wild horse kicking down the paddock fence that entraps him and bolting for freedom... 

Well the marathon shopping is done leaving two weeks respite before the next one. I doubt three plus hours food shopping is something anyone could enjoy, and to add insult it's embarrassing handing my purse to whoever I'm with so they can rummage for cash. Sometimes it's difficult to be sure what cash I have, and I can't see the till total or hear the till operator, I'm always glad to leave the store.  Back home a cup of tea soon melts the stress, I've got gadgets to stop the kettle spilling and another to prevent the cup overflowing, the latter operates by vibration which is also how my alarm clock works. Trust me a vibrating pad under the pillow would wake the dead.

Sipping the tea I started thinking about life and what it's all about...when the world is silent and semi dark it leaves a lot of time for thoughts. There was a time when I went shopping and everyone would stop to talk to me but nowadays its rare anyone approaches. People smile and wave, I don't see them and walk past and some people are now reluctant to approach knowing the communication difficulties. When my hearing was fading but my vision was fine people would chat ceaselessly to me and I'd bluff my way through conversations pretending I heard every word.  Most people with hearing loss buff but will be loath to admit it.  Rather than asking people to repeat themselves its easier to smile or frown, nod and say things like 'gosh, really, wow, etc. and hope we've said them in the right places. I've lost count of the times someone has been chattering away to me leaving me struggling to guess what on earth they were talking about. Thankfully, my skill of nodding and muttering must've worked because few people ever realised, I was growing profoundly deaf and their conversations were meaningless to me. 

Most of us bluff through certain things in life. We disguise emotions, pretend to be brave and act strong because we don't want to appear weak especially to the people who depend on us. Sometimes we honestly believe ourselves that it's just bluffing when in truth it's not, most of us are far stronger than we realise or give ourselves credit for. Things happen in life that can't be changed and no amount of wishing or regret can undo them. Past events, loss, misunderstandings, cruel treatment, acquired disability, they can all induce feelings of failure and helplessness, I learned these lessons the hard way. We could go through our entire life asking why, why me, why did that happen, why did someone do this to me, what did I do wrong...There's no answer, never is. It's what distinguishes people from being survivors or victims and life is about survival. When sad things happen and we retreat into ourselves and suffer that well of self pity. There's nothing wrong with self-pity really provided it's recognised and doesn't become the focus. Being vulnerable is something so many of us suffer from but there comes a time when we either give in to vulnerability or decide whatever happened to make us so cannot control everything. Physical and mental disabilities including depression and stress cause so many different symptoms and results. Expecting everyone to respond the same would be ridiculous. What we can learn from each other, and life is, that we cannot undo things, when life changes dramatically we can all decide to adapt, learn to love who we still are and learn other ways of doing things. They say we can't love and understand others until we love ourselves, and that means acceptance. Once we accept ourselves, we can teach others how to accept us too regardless of limitations and differences...

Finding ways to pass time with the restrictions of dual sensory loss is difficult to say the least. Gadgets to enhance life for blind people aren't necessarily of use with dual loss, the same applies with hearing loss gadgets. Severity of acquired dual sensory loss varies a lot from person to person, some have a little more vision while others have a slight bit more hearing, as luck would have it I seem to have one of the highest levels of loss to both senses, unlike those born with disabilities those with acquired issues can suffer a sense of bereavement, after all it's a loss and life changing occurrence. Things I used to enjoy such as sewing, cooking, listening to music are out of reach, thankfully due to a marvellous piece of technology I can still read books, abet painfully slow. The gadget is a high performance magnifier attached to the TV and operated via a mouse. Its a case of scanning over each word with the mouse and viewing it in high density on the screen. Simple chores such as ironing are hit and miss and fortnightly shopping is an utter nightmare, someone has to accompany me and whoever has the unfortunate task is forced to tell me the brand, size and price of every item. Apart for being almost totally blind I'm colour blind too. The privilege of selecting my clothing usually falls on my teenage daughter. We're the same clothes size which is handy for her and means the chosen clothing more often suits her best. On the plus side it means I'm a pretty trendy mum and grandma!

I'm blessed with a wonderful support worker who's help is invaluable. On advice I applied for 12 hours support per week, it would've allowed me to get out and about even if only to go for a cup of tea or a walk. However local cut backs meant the 12 hours was cut to just 3 hours per week. It means that precious time of freedom is reduced to her making phone calls for appointments etc. We don't have time to do anything other than I was awarded just three hours per week. It means my only escape from home apart from the shopping trip is when working as a communication instructor or to attend meetings. On these occasions because I represent Deafblind Scotland, guides proficient in dual finger spelling and electronic note-takers are provided free. These services are also provided free by the NHS for hospital/doctor appointments though its only recently that came about. That aside the only other activity I can participate in without having to worry about cost of communication assistance is Labour Party meetings. Be it an appointment or other activity I'd be liable for guide fee's (approx £15) and note taker fee's (approx £45 per hour).

Back on the subject of pastimes. Occasionally I'm asked to take another deaf/blind person along to my talks or classes. These people were just like me not that long ago. Withdrawn, lacking confidence and desperately in need of something to help them feel valued again. The majority of dual sensory loss people and acquired deaf people are reluctant to admit they suffer sensory loss, having difficulty conversing brings strange reactions from others, more often people assume there's some sort of mental problem rather than sensory, there's stigma attached to invisible disabilities, what people can't see they can't understand so judge instead.

On one occasion I was asked to take someone who was born deaf, blind, and mute to a class with me. I'd never met anyone born with multi-impalements before. With his guide finger spelling onto his hand, he signed back explaining about his life living in sheltered residency, he had people to cook and clean for him, iron and wash his clothes and sit with him for a few hours per day for companionship.

“For many disabled and elderly people, the only companionship they have are the people paid to speak to them.”

he spoke of his only real hobby – Lego kits. He had no idea what his creations looked like his only sense was touch and he spent most of his days and evenings creating objects.  I had to leave the room for a few moments to collect myself. I cried for several minutes, like all people born without senses he couldn't understand how much life he is missing out yet in his own way he is happy. But for me, and those like me who have known the joy of music, laughter, looking up at the stars and seeing rainbows reaching across the sky in glorious colour dual sensory loss is agonising and frightening.

I have speech, but the reality of endless future days and nights with nothing else in life other than fixing unseen objects together and waiting for someone to spell words onto my hand hit home hard...

Today was one of those marvellous days though it didn't start out as such, it took approximately 3 hours before I could focus on anything. It happens with increasing frequency but I'm beginning to grow accustomed to it and not panicking as much I initially did. The restrictions and dependency imposed on people with acquired dual sensory loss can be hard to deal with.  Sometimes, if no one is around to help I've plucked up the courage to walk to the local shop, though only in the early evenings when the painful brightness of daylight is receding, it's only a few minutes walk away but the trip involves crossing two roads, neither could be termed busy but any road is a challenge when the traffic can neither be seen nor heard. Filled with bravado I'll venture across with both arms outstretched muttering “que sara sara” hoping any vehicles will miss me.   No one was around today and it was too early even on a dull rainy day for me to risk the short trip, when my vision settled I turned on my beloved PC and messaged my younger daughter who was elsewhere in hope she could suggest something.  Young people today get so much criticism but I've yet to find one youngster who has refused to help, via messages my daughter told me one of her young friends would pop round and go to the shop for me. The kindness of people never fails to touch me.

As it turned out the kind young man was spared the trip to the shop by the unexpected arrival of my brother and sister in law, little do they know the positive impact of their visit, they live some distance away so visits are rare and infrequent but such positive boosts. Both are incredibly inspiring caring people who allow me to talk at length, listen and take the effort to make themselves understood I talk for hours which must be annoying but they tolerate me so well.  Any friends I had have frittered away partly because of the difficulties communicating, I miss some of them greatly not least because of the companionship but in truth its easier avoiding social situations, people simply can't understand the extent of my problems regardless to how sympathetic they are.   My life revolves round my children and grandchildren, however regardless to how close we are to these important people they don't know us as adults or anything but the roles we play and like friends who knew us before sever sensory loss they can't grasp the significance. The truth is what you can't see you can't possibly comprehend. My brother and sister in law have spent their lives helping others, seeing the work they do encouraged me to fight against inequality and discrimination. Today thanks to them I felt like a normal person conversing in a normal fashion.

Once upon a time I was quite driven and active, involved in a host of things with a few achievements to my name including a change of law, how quickly life can change and turn the world upside down. It took me a few years to come to terms with my sensory problems and discover there is help out there and there are means of communications available. Now once again that drive is returning and growing more and more each day, there's a sense of urgency involved, urgency to make impact, make people aware and above all prevent others from suffering unnecessary isolation. I didn't manage to send my usual deluge of emails today. Usually I bombard MP's and everyone else I can think of demanding change and recognition, hopefully now the holidays are over I can start harassing officials with a vengeance and get back to touring the country giving speeches and making myself heard. 

I'm so very glad I my wonderful brother and sister in law stopped by today, companionship means everything and a little understanding can change the world...

2nd January 2012

I haven't seen one of my daughters and my son since Christmas and miss them greatly. They only life a few miles away yet it might as well be on the moon. I can't use the phone to speak to them, all conversations are three way which can be annoying for the third party involved. If there's no one on hand the only means of communication I have is via the PC. Unfortunately my daughter doesn't have internet connection, when she phoned me our conversation was limited to me yelling 'how are you?' and 'love you' into the hand set held by my youngest daughter.

Visiting my children is a rare event, travelling a few miles might seem easy but I can't use public transport and depend on taxi's instead. DLA is supposed to cover additional expenses b ut despite being registered blind and deaf I was advised not to submit a claim for higher rate DLA at this particular time. A simple outing can cost in access of £25 which can pose a big problem. Instead I wait for my children to visit me, with young families, work commitments and all the rest it can sometimes cause problems.

Being dependent on benefits is a humiliating thing. Benefits don't make allowance for birthday's and Christmas's and with a large family it seems every month has one or more events to cater for. Being though of as a stingy grandma who never buys gifts is a horrid prospect, sadder still is the fact I simply can't understand a thing most of my grandchildren say. Benefits don't cover redecoration, or refurnishing, hiring decorators is an expensive business at the best of times and the same applies to gardening. The simple things we used to be able to afford to pay people to do or do ourselves are out of reach.

I suppose I shouldn't complain. I'm loved and know it despite my increasing limitations I'm not down and out or beaten yet and tomorrow is another day...

1st January 2012

Today seemed a lot brighter than yesterday in many ways, not least because the strain and stress of Christmas is finished for another year. The three daughters who'd happily gone out to celebrate the New Year returned intact with minor headaches. It proved a particularly enjoyable morning because my oldest daughter sat with me and spent some time talking one-on-one. Sitting close with the light behind us is the only real way I can communicate directly. I used to adore cooking not only for the family but for friends too. Holding dinner parties sometimes for as many as 16 people on my beautifully arranged oak dining table. I was proud of my culinary skills and ability to serve up 5-course meals, each painstakingly home-made.

Those were the days when life was prosperous though not necessarily happy. We worked hard and reaped the rewards, but sadly no one can predict the future and those days came to a sudden, abrupt and even cruel end.

With full-time care of my granddaughter, cooking is a necessity and a challenge. The food is inevitably burnt, my hair singed and if I escape with a couple of minor burns, it's a good day. Thankfully today my daughters were on hand to help and dinner was edible for once.

My granddaughter has been staying with her mother over the festive period, an event I never thought we'd see happen. My daughters' health has been consistently stable for some time, the relief of that and seeing my daughter and granddaughter reunited has been one of the pinnacles of life.

It's amazing how we can be surrounded by loved ones yet be entirely isolated but today was a good day, for a short while I felt part of life again and know I will sleep peacefully.

Changes

The day started like almost every other day, walking in darkness and silence unsure if the darkness was total or just the fact it was early hours. Afer a moment or two I realized the darkness was the pre-dawn sky and not blindness. The relief was immense, I thew myself back onto my pillows smiling to myself. It didn't last, within minuits my head was throbbing filled with the whirling and buzzing sounds of tinnitus. I've learned to think of a song that I can match to the noises in my head. it usually works. The downside is I can't shift the tune and tinnitus for days. 

I got up and felt my way cautiously down the stairs not wanting to switch lights on, sudden light when half asleep is blinding for everyone though its worse for the vision impaired.
It can take ages for my solitary seeing eye to adjust to light, sometimes it helps to hold a hand in front of my face and look through tiny gaps between my fingers.

Wish there was a time limit to how long it takes to adjust to a sudden disability, wishful thinking. it's just hard getting through each day feeling low, lost and confused believing life will never improve. It does of course. not the way we envisioned though, the survivalist instinct kicks in. My biggest fear is I'll come to terms with my situation finding ways to do everything, then suddenly this little bit of remaining vision will go, it's inevitable, There's a massive difference between utterly deafblind and totally deaf and partial sighted. I'd give anything to do the things I used to do but I'm learning new things almost daily. It's not the same, but life always is about changes.  

I'm learning to feel everything and that includes dirty workbenches, the tables and the foor. Have to feel for dust and dirt and everything else. I wish I could adopt the policy of out of sight out of mind, but rt wouldn't work.

My teen daughter and her cousin along with my teen grandson were sleeping upstairs gave me an idea Maybe if I searched for some of their things and shoved them away somewhere they'd all help clean up to find them. It didn't work. I hate clutter, its the bane of my life, but I've got a large family. The grandchildren like to have sleepovers but it's reaching the stage when I can't see to cope, its been hellish for years without hearing but without vision its a million times worse. I don't think the family accept I'm genuinely blind and deaf. it could be a case of like me they simply don't want to believe it. I wish they'd understand my struggles, realise I've changed and can't be all things to everyone any more.

I used to enjoy doing everything including cleaning up after them, but now I resent it knowing they are old enough to help. I'm not sure what's worse, deafness or semi blindness. Now and again someone will try to include me in conversations, it doesn't happen often nowm it's challanging and frustrating for them having to repeat themselves over and again,

Once I thought deafness was the most isolating thing, now I know differently. I don't think my otherwise loving family are unique in the sense they are unwittingly prejudiced against sensory losses. They ignore the evident signs.

Life used to be about getting up and doing things to change the world and help others, ironically the boot is on the other foot, I'm the one needing help.  I can't see in the mirror now. if I could I'd ask my image 

who am I? who have I become? I'm sure I'm not the only person with acquired disabilities to ask myself those things.

Helplessness and dependency applied to other's not to me. I guess Pm wallowing in a stream of self-pity at the moment, why not. However it doesn't make me weak, I'm suffering bereavement. part of me has died. 
Now isn't the time to worry about tomorrow, it's one day at a time. For now I don't care what people think of me. The bit of me that stands tall and fights back is still here somewhere, it's having a rest, the road forward is going to be tricky and challenging.  

I don't watch TV anymore, can't read books, listen to music, drive a car etc.  I'm an alien from a distant planet. Far from home and lost. on a primitive technology can't help. I hope I'm around to see mass production of bionic eyes and wonderous hearing gadgets. 
 
Thank heavens for the advent of home computers, blogs and platforms like Facebook. Adjusting them to enable me to see is tricky, enlarging the text to maximum size means slow typing but at least it works, I'm conversing to the outside world one slow painful letter at a time.
I'm luckier than I realised many people can't do this! 
Uplifting little phrases take on new definitions. "there's always a glimmer of light in the darkness" and "there's peace in silence". Absolutely true abet depending on the context.