Making a Difference

There's a few characteristics I've been fortunate enough to inherit from my late parents, persistence and dogged determination are two but sometimes even the best determination falls flat. I've always had a huge amount of admiration for Helen Keller. That great American woman struck down with meningitis or scarlet fever as a small child, the result was loss of sight and hearing rendering her mute. The story of Helen is astounding not least because of her strength, passion and and determination. She went on to become an icon of survival and overcoming odds and representing so many deserving causes. What set Helen apart from most deafblind people was the fact she had the backing of an influential family with friends in high places, including Alexander Graham Bell and President Cleveland. I suppose my point is it doesn't matter how much desire or determination deafblind people have, nor what level of intelligence they possess, without support, equipment and finances they are doomed to become inconsequential and forgotten.

As more and more services come under fire from cuts and charities struggle with reduced means to retain quality of assistance, more and more people risk being left out and even more vulnerable. The equipment needed by many deafblind people tends to be a combination of deaf and blind aids, those with a small amount of vision but no hearing often prefer electronic note takers to the alternative of dual finger manual. There's some highly acclaimed deafblind people today, many suffer from Usher Syndrome and while for some the condition means sever hearing loss and tunnel vision, for others it means they have a slightly better chance of achievements. I could be wrong but from my personal observations employment of deafblind people, even amongst deafblind charities is those suffering from usher Syndrome who have retained that little extra bit of hearing and vision are more likely to find employment. In contrast deaf and blind charities seem to employ a significant number of deafened or blind people. A lot of the problem with employment of deafblind is the additional help and equipment needed to allow them to conduct a job successfully. It adds up to a huge amount of money to employ just one person and so opportunities are few and far between for a deafblind person to remain a contributory part of society.

I've been involved in a project aimed at helping deafblind people regain confidence and a place in society, but funding is running out and the future of the project is in doubt.

Using what I thought was good initiative I bombarded various organisations to allow me to continue individually some of the work to project had undertaken. I felt incredibly proud when I managed to secure a few ventures that will not only help deafblind people but help bring general patient awareness to newly qualified GP's. The problem was funding these things, after all to do anything I need the support of a guide and note taker, I need literature and printed finger manuals to distribute. Despite jointly running a business in a former life I don't have a clue of costing for equipment, guiding and printing and don't have the foggiest idea how to find out. Incredibly after approaching my local council and calling in a few favours I was told it just might be feasible to get enough funding to last a year, I just have to submit those dreadful funding costs and cross fingers.

The possibility of getting out there and doing something that I personally initiated and knowing I can achieve is a huge boost. I can almost forget my restrictions and bleak future.  But it all comes down to my first point about Helen Keller. Finance and support. With those two things almost anything is possible. The support of people who understand my needs, who give as much assistance as possible. The finance to enable these people to help me and provide necessary equipment. Helen Keller was an amazing woman but also in some ways a fortunate one, the opportunities to make an impact on the world and make yourself heard is not readily available to most of us.

To be able to say 'I have this condition but it didn't control me or beat me because of my own determination and the support of good people,' must be a truly wonderful thing.

To be one of those marvellous caring people who can say “I went out there and helped someone achieve by supporting and encouraging them,” must be an equally wonderful thought...

This morning I'm in one of those up and positive moods where anything is possible. it's in no small part thanks to a visit to the doctor which went extremely well and all down to my support worker and an electronic note taker. 

I'm not sure if my support worker will appreciate me revealing her name but she's come to be a very important part of my life recently. Zoe works for Deaf Action and frankly without her assistance there are days when I couldn't function. Because of council cut backs my time with her is technically limited, but even those few hours per week make all the difference in the world. She organises things, makes endless phone calls and acts like a mother hen despite the fact I'm decades older than her. People like Zoe are the salvation of people like me, although strictly speaking her time with me is limited she'll do things for me outside the allocated period, that sort of effort means everything and more so when she spends time just listening to my whines. With Zoe on hand to remind me of things I'd intended to ask the doctor and the note taker typing away in large font on a lap top, I found for the first time in years I knew exactly what was and wasn't wrong with me. I have to gloat a little because my own self diagnose was correct, I think people suffering dual sensory loss have sensitivity to their own bodies, perhaps one of the many ways the body allows other compensate. The down side is any changes in general well-being seem to be more highly emphasised. One of the bug bears of any disability is increased stress levels, in the case of acquired deafblindness communication and isolation along with restricted activities certainly add extra diminution.

Thanks to Zoe the doctor has agreed to refer me to the local gym and swimming pool, Zoe plans to accompany me and the doctor will assist my bid to get additional support hours from the local council.

I can never plan ahead on anything, I never know what level of ability I'll have on a day to day basis. The only time I do make plans are for appointments or my beloved voluntary work but even that can be touch and go, being forced to drop out of giving a talk and spreading the word about dual sensory loss always upsets me. I've recently found out the funding for the project I work with runs out at the end of March. I'm devastated because talking to people and letting the world know about deafblindness means everything to me. I visited the local ob centre again (I'm a regular visitor there), asking them to help me find means of getting a note taker and guide to enable me to do voluntary work independently. There's so many area's in society that need to be taught about disability awareness, patient awareness and deafblind awareness, unfortunately as usual the job centre couldn't offer any new advice. I'd love to have a meeting with the powers that be who decide to make cut backs and impose even more restrictions on disabled people. I'm sure I could enlighten them on a few facts!!

The weekend ahead should be an exceptional challenge for me. Three of my daughters now hesitantly and grudgingly are starting to accept I'm not the mum I used to be and taking note of the fact I'm cut off from so much. They've asked me to accompany them to a friends Birthday bash. Even if my vision is stable it'll be a huge challenge lingering round in a semi dark venue surrounded by people I won't be able to see or understand. But I've decided to set myself new challenges and goals, after all I claim to be a survivor I ought to prove to myself I am. I might chicken out at the last minute but if I do go at least I'll be able to say to myself. I tried.

I've got another challenge ahead this weekend too. Two of my grandsons want me to go to Edinburgh with them, it'll mean taxi's trains, crossing busy roads and heaven knows what else. My oldest grandson is 16 and has pledged to look after me well. These two things might seem simple to most people but for me they'll both require a lot of courage and Herculean effort. As I said I can't plan ahead but I've come to the conclusion if I don't set myself goals and challenges then life will just pass by and the only substance to it will be the memories of long ago before dual sensory loss...

All's Well That Ends Well.

The last few weeks have been anything but settled. I had to concede defeat vision wise and curtail my usual umpteen posts on facebook, twitter and my blogs, writing was painful and extremely difficult, I always dread the days when even increasing font to huge proportions won't help ability to read because everything in blurred beyond recognition. Times like that tend to make my already poor balance even more haphazard, dual sensory loss can have enormous affect on ability to walk a straight line. That's where the red and white symbolic stick and dark glasses help people distinguish my staggering as visionary problems rather than someone who's had a tipple or two to many. It's rather ironic really, I don't drink and can't recall a time when I've been inebriated and certainly not enough to leave me staggering!

I've mentioned before on days when vision is severely limited and balance poor, it's impossible to find anything constructive to do, even simple exercise is a challenge and a half so I find myself laying in bed unable to focus on anything and a danger to myself. Remaining inactive for days on end is unhealthy for anyone, the hours drag by over the last few weeks I've spent as much as 16 hours a day laying doing nothing other than cat nap hoping every time I open my eyes I'll see a little clearer again. It's odd the way my remaining vision tends to come and go without warning, a bit scary and sometimes depressing too. I'd give anything to feel a valued member of society again. It really isn't a case of lack of effort or desire, society just won't make allowances for me or those like me.

Naturally being a survivor and fighter who doesn't accept limitations willingly can take it's toll sometimes. Stress and lack of activity finally got the better of me last week when my heart rate went into overdrive, fortunately my grandson was on hand to call the health centre else I dread to think what would've happened. I've the highest respect for paramedics in general but had a run in with one particular chap last year that left me shocked and angry. He'd been called out to attend my granddaughter who had breathing difficulties because of an infection. His attitude towards me when I explained I was deafblind was dismissive and almost ridiculing. After a formal complaint to the ambulance service I was assured deafblind awareness would be promoted to all staff in future.

When the health center called an ambulance last week I was nervous about how they'd communicate with me and how they'd react but they took pains to make sure I understood them. Mind you, when they told me I was about to have a heart attack, my pulse was over 130 and I was in bad shape, I think I'd have rather not have understood them!!

Unfortunately the doctors at the hospital didn't make the same degree of effort to clarify what the problem was, after giving me this and that they agreed I could return home none the wiser to what had actually gone wrong. Maybe ignorance is bliss.

Fortunately I've got my marvellous support worker who'll accompany me to my next appointment and along with an electronic note taker I'll hopefully be able to tell the doctor what help I think I need and read what they intend to do.

Tonight I have written again and can see enough to read my type. All's well that ends well...