Powered By Blogger

Friday 13 April 2012

Candy Cane


I've not reached old age yet and in many ways I'm pretty fit, the family come down to visit and I see my beautiful support worker for a few hours each week. Yet the sad truth is I can spend days and nights on end without speaking to another human and I suspect I'm far from alone in this respect. Without the use of phones and without the option of nipping next door for a chat with the neighbours, or popping up to the shops and bumping into old friends, opportunities to converse are incredibly restricted. being the life and soul of the party was never my scene but I've always enjoyed a nice little conversation about something or nothing. Giving talks at schools and organisations brings me back to life, I can talk the hind legs off a donkey figuratively speaking. Communication is therapeutic and my contribution towards educating people about deafblindness allows me to clear some of the frustrations of isolation.

Recently I attended a review for DLA accompanied by my support worker and a truly marvellous note taker who's helped me in an endless amount of talks and general appointments. Having to reveal personal aspects of my life and limitations to an official who knows nothing of me is embarrassing, I prefer to be seen as a survivor and show bluster to the world, I suppose it's a natural protective mechanism and that was my attitude at the DLA review. Review questions don't cover the majority of disability issues, there are people with hellish disabilities who are limited in so many area's yet can still go to the toilet unaided but somehow that seems irrelevant in the great scheme of things. The review was an emotional experience and I honestly didn't care if the DLA award would be affected or not, I didn't want to seem like a helpless hopeless creature begging for financial assistance.

I've finally got my new white cane which is now decorated candy cane style with red tape. Red and white symbolises deafblind and distinguishes between the white for single sense loss. Most people only put two red circles on the canes but I like to be different. The cane is quite long and actually a bit heavy, there's a special sweeping technique to using it allowing reasonable space at either side of me. The possibility of hitting someone passing by worried me but the RNIB instructor said “don't worry about hitting people it's their fault if they aren't watching where they are going” Yes well...a fine statement to make to a person who spends most of the time apologising to lamp posts and mannequins when I accidentally collide with them thinking them humans. It's not just because of vision loss, it's disorientation and bad balance which are often the result of dual sensory loss.

Being alone so often means I find myself spending a large amount of time talking to the cats, lots of people talk to their pets for company so I don't think I'm totally potty. There's double reason for it in my case too, it also helps me practise at keeping my voice and tests my word formation. Thank heavens the cats can't talk back to me though, they'd most certainly tell me to shut up, that's one plus about being deaf. If ever the cats did answer I wouldn't hear them unlike anyone else who'd most surly have a heart attack!

Occasionally one or the other of my daughters will drag me out clothes shopping with them, can't think why and I can't say I enjoy it. Unable to make out fabric colours, sizes or prices I'm left to hang around for ages  trying not to look conspicuous. Of course they move from rail to rail examining this and that and sometimes forget I'm with them and it annoys and flusters me at times. But there are times when I get my own back on them.  I'm small and petite so I'll deliberately hide between rails of clothing, it makes me chuckle thinking of my adult daughters stopping assistants and saying “Can you help me I've lost my mum!!”

Sunday 1 April 2012

Spring Cleaning


The tradition of spring cleaning dates back thousands of years, even in this modern age of minimalism and a million and one cleaning aids people still get the urge to throw off the gloomy shackles of winter and welcome spring by freshening the home. There was a time when daily and seasonal cleaning was something I took pride in, I relished the challenges of balancing housework, motherhood, work and hosting our famed dinner parties. Today the picture is completely different. The family has grown and spread wings, dinner parties are a thing of the past and basic cooking is hazardous as my burnt hair proved and cleaning...where do I start.

Like so many things in life cleaning is dependent on vision, limited vision means you can't see dirt, but it doesn't mean your unaware of it. It's impossible to retain high standards or even reasonable standards without assistance, someone to point things out and help do the things we can't do. Unless someone tells me there's cobwebs or stains somewhere I've no chance of clearing them away, everything from ironing, operating the washing machine, mopping a floor cleaning windows and washing dishes is hit and miss. Forget household repairs and decorating, unless there's someone on hand to do these things or enough finance to pay someone then they can't be done. Most women are versatile and handy with a paintbrush, needle and thread and can hammer a nail in, I used to, I can't now. Simple things like mopping the floors is can be dangerous, wet slippery floors cause injury even to the sighted. Hovering the carpets is hit and miss too, I've lost track of the times I've 'thought' I was hovering only to discover the machine had come unplugged or I hadn't actually switched it on properly, when your holding the hose of a hover you don't 'feel' vibrations so lack of hearing and vision affect that sort of thing. 

When people live alone it's even more tricky, I think it's wrong to expect families to be on hand a lot. Most have young children don't live close by and demanding jobs too. It raises the question of how the system can help and should it. Well yes, no one chooses disability, what's the alternative, leave people to rot or put them down as an unnecessary burden and expense. The old adage "you have to walk a mile in another man's shoes" comes to mind.  There's no gratification or pride in feeling your a burden to anyone and disabled people often feel that, we don't need the rest of the world to make us feel it too. It's unrealistic to expect to much from others and I honestly don't and there are times I loath my inadequacy even within the home. It's very true that retaining a sense of humour and the ability to laugh at self, life and circumstances makes all the difference in the battle for survival. Somehow I can always laugh about the streaky windows, blotchy paintwork, going out with a hole in the behind of my slacks because no one thought to tell me about it, burnt frizzled hair and all the rest. Better to mock ourselves than mock others. 

Realistically there's a need for mental organisation and a place for everything but it's not always that simple. I've spoken before about difficulties for some families understanding changes and restrictions of acquired dual sensory loss. Females of any age love make-up, perfumes and toiletries, though grown my daughters are no exception. My home is often the gathering point when they decide on get together nights out and it inevitably means chaos, particularly in the bathroom. I can't decipher labels, so knowing the exact position and location of toiletries prevents disaster. In theory. Enter stage left – A group of sisters and a few friends vying for the bathroom to get ready. I've washed hair with conditioner or shower jell, cleansed my face with fake tan, used hairspray under arm mistaking it for deodorant and cleaned teeth with a tube of emulsifying oil thinking it was toothpaste, it could've been worse. Thank heavens no one suffers from hemorrhoids!!

Laughter aside, there's little or nothing about daily life in or outside the home that isn't hazardous or extremely difficult to do for people in my position. Bit by bit independence slips away like the receding tide and no amount of effort can prevent it. All the confidence in the world can't change the sense of fading away into an empty void. I don't think it's cruel or unfair to say people born deaf and blind can't possibly grasp what's missing in life, parents, teachers and helpers show them how to adapt and interact within specific boundaries. Experiencing the familiarities of life and natural abilities gradually erode is on a different level and the ageing process doesn't improve anything. 

The ability to write down my thoughts and share my experiences knowing that out there people read them and try to understand means an awful lot, it's a sort of therapy. In some respects deafblindness is like a life sentence of solitary confinement in a black cell. It's not possible for anyone to unlock the door and throw away the key completely, but it is possible to learn how communicate and include people...