Da Da Day!

Tanvir Naomi Bush Writing 1 Comment

As I have a British passport I feel I must comment on the weather. Today, Feb 9th, I went out in a T-shirt. The sun was actually warming, the sky bright blue and everything glittered as if embedded with mica. Potentially climate changetastic but still so lovely.

This is how gorgeous today was:

‘the Blind’

Tanvir Naomi Bush Radio, Visual Impairment 3 Comments

On Monday I was asked to review a play for the Radio 4 programme ‘In Touch’. It was called ‘The Blind’ and featured 6 blind and VI actors. (there is a theme methinks…)
Turns out the opening night was in the depths of Stoke Newington near no station I have ever heard of. The studio theatre was outside, round a corner and down some raggedy ass steps and in a basement. The irony being this whole trip would have been bloody difficult if not impossible for a VI person like myself to attempt without help. Luckily my Mum came along and we extended the evening to include a delicious sis kebab at a Turkish restaurant.

Urban Unbinding

Tanvir Naomi Bush Poetry, Writing 1 Comment

The first law of dynamics states that for a thermodynamic cycle the sum of net heat supplied to the system and the net work done by the system is equal to zero.
More simply, (thank God for Wikipedia) the First Law states that energy cannot be created or destroyed; rather, the amount of energy lost in a steady state process cannot be greater than the amount of energy gained.
This rather makes the ‘Urban Rebound’ class at the gym a non event. All gym activities really. Apply the theory and it becomes apparent that one should stay at home in a state of entropy with the remote control and a cat in a box. (You quantum groupies you!)

‘Urban Rebound’…sounds so exciting eh? Like something one might do in a stolen car in central London. I finally got into the packed class today and it turns out far from learning ways to utilise a wire coathanger in a lock, it ACTUALLY involves running and jumping very fast and very carefully on a tiny little trampoline known in the trade as a ‘trampet’…(no, not a trumpet…that would be more interesting but painful. It would jazz up the class a little I s’pose… certainly be noteworthy (enough ed!) )

One takes in to the class:
Steel under-wired bra
Universal law of gravitation

One loses, if not weight (please refer to the first law) then certainly:
Pretensions to grown-up-ness
Bladder control

However, as it is more complicated to steal a car and drive riotously through the city (although this is certainly quite tempting right now) this version of urban rebounding may be the thing that puts the spring in my step over the next week or two. Alternately, as the trampet is so very small and I can’t see my feet when on it I may well end up in plaster. Probably better then ending up in jail…I’ll bounce that idea around.
Hey – thank you all you people who commented and called me after last post. Don’t worry..in this case what doesn’t break me makes me very, very much stronger.

This is a miserable post but have to get it out of system. Sorry.

Tanvir Naomi Bush Disability, Visual Impairment 3 Comments

Several people have asked me if I am looking forward to my trip back to Zambia. Well yes, I love Zambia, the light, the beauty of the country, the wit and wisdom of the people, the life, the soul of it all even given the appalling poverty, tragedy and corruption (insert Miss World speech here) but, for me, there is this:
Macular cystic oedema. I have it badly today. It hurts and it blurs my vision and it comes and goes again seemingly for no reason. This you already know about from previous posts, but did you know that when I was in Zambia I had it for three years pretty much constantly.

In Zambia no one had the ophthalmologic equipment to diagnose the problem. I was given varying doses of a steroid that made my face puffy and made me gain weight. Next, I was told I had ‘dry eye’ and given drops. Then both. In the end the optician and ophthalmologist I saw said there was nothing they could find and nothing they could do.

The ‘problem’ is that even with the retinitits pigmentosa, I look sighted, make eye contact, can manoeuvre in good light without a cane and the only outward sign of the additional problem, the oedema, is a slight redness in the skin around my eyes and a ‘sheen’ on the eyeball. (Oh, and me hissing ‘owww’ a lot and squinting…but that’s by the by) Because I did not look (DO not look) or always act visually impaired, and because the oedema was not diagnosed, I found myself in a very difficult situation.

Lusaka has the kind of society that feeds on spurious gossip and a rumour was put around to the effect that I was faking, I was claiming visual impairment for attention. (Good grief! You would think if I was going to claim something for attention I choose something a bit more well…sexy. I was secretly working for the KGB perhaps or how about me having Liam Neeson’s love child. Oooo.lets stay there a sec…..)

As my sight deteriorated over those three years the rumour seemed to gain a foothold even amongst people I had not met before. I was physically attacked twice whilst in my favourite night club by drunken men telling me that I was faking it all just to ‘get men’. (This obviously after I had refused to sleep with them – and don’t worry on the first occasion I ran away with only a torn shirt and the other time Teelo who was drinking at the same bar, waded in, dreadlocks flying and sparks exploding from his eyes and we both ended up with free drinks all night.)

However, joking very much aside, I had people tell me they thought I was disgusting to be causing so much trouble to my family. I even had a couple at a party say to my face and surrounding guests that I was ‘an outright liar, manipulative, cruel and evil.’ The woman said she was telling me this on behalf of my friends and family and by this point I was so confused I believed her. When someone tells you they don’t believe you, that they know you are a fake..what can you do? I couldn’t pop out my own eyeball and show them the mess on my retina. It is a Kafkaesque situation. ‘I say you are mad. If you say you NOT mad then you are obviously deluded and therefore even more mad then I thought..etc etc.’

I stopped telling people about the pain. My father had problems of his own and so did many of my friends. I went out less and less and drank more and more alone. After a while even dear Teelo couldn’t tempt me out at the weekends I still managed to pull together enough production work to be busy during the day and if the pain was bad I would sleep for 40 minutes during lunch and be functioning in the afternoon. When the pain and distortion finally began to ease it didn’t matter. I began to hate myself. I began to believe I deserved to be alone. I thought of taking my passport and disappearing. I thought of poking myself in the eyes to give people the ‘real’ blindness they seemed to need, and in my darkest moments I thought I should probably kill myself, my logic being that if it was hard now how much worse would it get when I lost more sight and still was not believed?

Finally my new driver totalled my beloved car whilst drunk as a skunk at 9am. Luckily I wasn’t in it but without a car, without a driver (he was fine: he was VERY relaxed) it was no longer possible to work and I made plans to leave.
It most likely saved my life.

Would I have been able to prevent some of the scarring in the back of my eye if we had had a realistic diagnosis earlier …who knows? I was so demoralised by those three years, literally consumed by confusion, shame and self disgust that it took a full year back in UK, the diagnosis of my cystic oedema, (I cried when the ophthalmologist said whilst peering at the scarring, ‘wow, that must have been painful’), the registration of my blindness and the love of a lot of people to bring me back from a very dark place.

So am I looking forward to my trip back? It’s tricky.

Fantastique hair tricks

Tanvir Naomi Bush Visual Impairment, Writing 1 Comment

Interesting weekend. Ended up at a very jolly party with two magicians, one of whom seemed quite depressed. The depressed one was also a hypnotist and it turned out an amateur ventriloquist. After a few drinks he disappeared suddenly and returned with a large and rather ugly ventriloquist’s dummy called ‘Dave the Dog’. He manoeuvred the dog’s mouth open and shut but no sound came out of either of them.
‘Are they already named when you buy them?’ I asked, not really liking the way the dog was looking at me.
‘Of course,’ said the dejected entertainer looking at me as if I was the mad one.

Ahh the life of a film producer…

Tanvir Naomi Bush Film, Visual Impairment 4 Comments

It turns out that I have a cousin who is a forth year medical student at Nottingham university. She is a member of the StopAids society and they invite me to screen my HIV/AIDS documentary ‘On the Frontline’ at the medical school. This is all very exciting and I rise to the occasion by finally getting my hair trimmed. Unfortunately, on the Thursday morning I wake to find my eyes on strike. They are sore, swollen and I peer at the world as if through a thick mosquito net with a couple of rents in it.

Dirty Windshield

Tanvir Naomi Bush Disability, Poetry, Visual Impairment 1 Comment

Dirty Windshield (In Space No One Can Hear You Scream.)

The screen is cracked,
Two bullet holes and
The blackened spidery cracks
Like septicaemia
Towards the veins and brain

The shield is almost down, captains.
Nothing can stop the
Eleven Million Mile High walls of night
Rushing at twice the speed of any light.
We are the fragile gnat

And just breath could now knock through
And rage bore wider holes
And the whisper of air
As you rush pass oblivious
Can knock us
Out of orbit.

Short and bit bitter

Tanvir Naomi Bush Radio, Writing Leave a Comment

There is something more tragic then the situation in Gaza, more nerve shattering then the gathering storm clouds of recession, more deeply, creepy then Peter Hain’s puppy dog eyes…the fact that the Scouts now have a badge …for PR. Yes, I know. It rocks the very foundations of the world. Apparently (and I quote the Week) to win the PR award, older scouts must show ‘an understanding of the brand’. And he shall walk among us and his name shall be ‘Legion’ etc.

Ohhhh yawn… I am a’weary now. I have been busy but not with anything particularly prose worthy. More job hunting, a bit of cleaning, a visit to the doctor. Actually kicked myself out of the door on Saturday night and went to a friend’s birthday party. There were fairy lights and plastic cups and lots of sweet young post graduates but sadly no dancing which is a travesty at a house party. Good to be out though…and no, sadly none of that either.

Today I had good talk with the radio producer about the pieces I would hope to record in Zambia..now on to the treatments and pitching! Three weeks to go and then the heat, the peeping of tree frogs and cicadas and the constant barrage of bloody awful puns from my dear old Dad.


Tanvir Naomi Bush Visual Impairment, Writing Leave a Comment

It’s Monday and I have lost the will to live. I have had no response at all from the last lot of job applications. Not even one of those ‘thank you SO very much for your application BUT ’ letters. I haven’t the energy to do another lot (although I will, I will..) and I have a deadline for a short story competition that I am nearing and here I sit, plucking out all the fruity bits from my trail mix and whimpering along to the Smiths. It doesn’t bode particularly well for the rest of the week.