Sticks and Stones

Sometimes no matter how much determination we have certain things are impossible to achieve. That's been the case for the last few weeks when I've tried to write more than a couple of sentences at once. The vision element has been more unreliable and unpredictable of late and even at extremely close range I've been unable to read lips. Worse, when visiting schools I've struggled to distinguish words written in the largest of fonts by the ever patient note takers. I've had no alternative but to use dual finger manual on occasion. Yes it's a wonderful thing enabling conversations to be constructed but I've got this mental block against it viewing it as the last resort, the last vestige of communication with other humans. I should be heaping praise on whoever invented finger spelling but I've fought such a hard battle to keep going and keep up the self pretence that I'm just a regular part of society and not a separate entirety.

Fighting to make myself seen, heard and included keeps me going, accepting the need for dual finger manual in real terms is like admitting defeat and losing the battle. I'm not a defeatist. Or rather, I'm not ready to give in to the increasing fogginess and darkness.

I know deep down I'm more fortunate than some, I've got my voice and golly I know how to use it. Deafblind people don't always manage to retain a good voice and those who do are usually withdrawn and lack confidence to speak out. They need people who can speak out and understand exactly what is needed.  It's a never ending battle to bring deafblindness to the attention and get the same recognition of other disabilities. it's remarkable that some people can retain a good voice when deafened yet others cant, I'm thrilled when people tell me they didn't know I'm totally deaf, its a huge complement. Pausing to recall how words sound can be hard work though generally once you've heard words you can retain the memory of specific sounds. Mind you there's some words I've forgotten the sound of and lots of dialects with sounds I've never heard, it makes the task of  trying to understand strangers difficult for any deaf person. Then there seems to be a whole new language in today's society, words to describe something are used in totally unconnected context.  

That said my own habit of mispronunciation can have hilarious or embarrassing results,  perhaps I need to write my own dictionary of  'language according to Beth.' 

It hasn't all been doom and gloom over the last few weeks. I met some fantastic ladies from Deaf Acton, an amazing charity that's spreading out and representing deafblind people. They invited me to give an interview and shoot a short film about deafblindness, they've been pulling out the stops to help me set up my venture of giving independent talks on dual sensory loss and communication. It means the world to me having that additional support and encouragement.

To date I've been using a shortish red and white stick it's more of  symbolic than a real aid, so recently the doctor decided to upgrade me to a long white stick with a rubber tip. I was surprised to discover you need training lessons before being let loose in public with them.

There's a technique on how to hold the stick and move it about for best assistance, obviously there's also a technique to make sure you don't make massive sweeps with it which could well trip up unsuspecting passers-by. I thought learning to use the stick would be a doodle but not so. An instructor took me to a deserted building with lots of hallways and steep stairs, outside the building was riddled with twisting paths and endless concrete steps without hand rails. I've mentioned before that dual loss of senses can and does affect balance and my balance is particularly unstable. After 40 minutes of going round the inside and outside of the building, up and down stairs, the instructor frowned, shaking his head sadly he said: “Can't help thinking you'd be better off with the white stick in one hand and a walking stick in the other!!”

A well known phase from a former Wimbledon champion came to mind; 'You cannot be serious man!'

The final part of the test was to put on a pair of blacked out glasses and try walking with the stick. Strangely, it seems I can walk a straighter line totally blinded than I can with my tiny bit of vision.

After an hour of prancing about I asked how I'd done, he sighed and shook his head. “I'm afraid you failed, looks like you need another couple of lessons.” Learning to drive was easier!

Being the mischievous person that I am, I didn't tell the instructor how I'm looking forward to qualifying for the white stick. I'll be able to brandish it around and clear my way through crowds, even better I'll wave it in front of me to stop the traffic so I can cross roads, slowly walk half way across then stop and turn back again. Oh the revenge on all those impatient drives who currently don't stop to give way to my little stick. Ha!!