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!!”