Trucking Sight.

You may recall that I had a hospital visit just before my trip to Lusaka and they said I had lost more vision. They meant ‘losing’! Holy shit people! I went out a couple of times last week and was completely off balance. Bits of pavement missing, people emerging magically in front of me, invisible cars. This all gets a little unsettling when trying to have ordinary conversations with people in cafes or at the supermarket. One doesn’t just turn desperately to people and share .

‘I must apologise for my twitching and jibbering..it is just that I seem to be losing my sight rapidly on a daily basis and it is so terrifying that I feel like I have a massive juggernaut truck thundering up behind me and I can’t escape. I am sure you understand.’

No that would never do. Instead one says things like;

‘Thank you I’ll have a mocha.’ Or ‘Please would you assist me with the self scanning machine. Its rejected my bean sprouts.’

It is the fear though – that articulated lorry screaming down the road towards you – that comes from knowing something as precious as sight is leaching from your life and there is nothing to be done but swallow hard and buy more magnifiers. I presume the terrible fear is there too for those of us with other encroaching disabilities. I have a wonderful friend with MS. We talked a little about that monster truck we can see if we look over our shoulders. We both came very quickly to the conclusion it is best, for the moment, not to look, just to keep running.

Just an aside about hospitals. If you have to go in for anything I would recommend dressing as a consultant. I did so the other day and got marvellous treatment. Power dressing gets you both attention and respect. (Although perhaps the stethoscope was going a bit far…I ended up doing a ward round.)
I once had an ongoing battle with a terminally rude, distant and seemingly bored ophthalmologist. I could never be sure he was giving my eyes full attention. I won the battle by wearing a red push up bra and the lowest cut soft ruffled black top I could squeeze into. At close quarters I could watch the cold sweat dripping from his forehead as he desperately tried to keep his eyes away from my sumptuous bosom (trust me on this one). To prevent a potential sexual harassment case he was forced to concentrate and focus on my eyes at all times. I actually got a coherent and detailed eye exam as opposed to the usual cursory dismissal. Small victories and potentially unethical but I couldn’t think of any other way of getting the little sod to do his job properly.

(c) T. Bush 'Dad's cooking apron.'

No Joke.

I follow my young friend up the stairs and to the reception. My friend is a kind person, full of energy and enthusiasm and she has invited me to try out her boxercise class at the central gym but when I ask for my disabled discount at reception she makes a strange snorting laugh and says loudly to all around,

‘You’re kidding? If you can do the sport why should you get a discount? Why can’t I get a discount for bringing you? ‘

Totally embarrassed and extremely shocked I turn to her. I can feel my face reddening. The receptionist looks at me and stares. My friend grins. She thinks she is being funny..I think she does anyway. I feel shame rise up from my tingling fingers, up arms and into my chest
I remind this friend, who now feels like a complete stranger, that we about to go into a boxing class and shortly I will have access to gloves and a perfect excuse to smash her face in.
‘Only joking!’ says she cheerfully oblivious of the danger to her life. She strides ahead to the studio.

Of course I swallow the bile and get on with it. I am old enough and ugly enough to know these things happen. I don’t let my psycho ninja self out during the class and actually we have a good time and a good workout. She is just not the person I thought she was. I will always have to be a bit wary with her.

In the past these comments and daft jibes were not uncommon but since I have developed strategies i.e. hermit-like lifestyle, tendency not to go out after dark, caution and caginess with all new people etc, I have forgotten how much they hurt. This one, unexpected took me aback, winded me. Last night I dreamt people were all around me as I prepared to do a photo shoot but my camera was flooded with water. In the dream it had strange sliding shutters like eyelids and they became rusty and refused to open fully, obscuring the lens. I couldn’t see what I needed but everyone was waiting for me to take my shot…..the equipment is cheap, faulty. I am ashamed.

Will I lose my sight completely? I don’t know and neither do the tens of ophthalmologists who I’ve seen over the years. ‘Probably’ is the prognosis. Originally I went to se the ophthalmologist with my then fiancé. I was 21. The ophthalmologist was uncomfortable. He told us that I might loose my sight in 5 years..then again some people retained it for up to 15. There was nothing that could be done but ‘get on with life’. He couldn’t meet my eyes (ahh the irony..) and couldn’t wait for us to leave. I had been perfectly healthy the day before. Now my future was obscured. I tried to be heroic and at first the

drama of the movement was almost exciting. Photo; 'Obfuscate'T. Bush (c) 2008

Everyone gathered around…ohmigod..have you heard….etc. But as the months dripped by and not much changed, the tension lessened. Publicly I too got blasé but privately I clung to my fiancé desperately and, consequently, he poor chap managed about a year before he fled. (I have never talked about it in depth to subsequent boyfriends and made sure they were always the kind of men who would never ask..)

Look I’m not complaining. I have it easy compared to many people with my condition. My optic nerves have been so shored up by gin and tonic that I get confused appreciation at every hospital appointment. They are so far 'happy with my progress.' Importantly I am not in pain..not compared to many of my friends with other disabilities. And this is not terminal..except that I cannot imagine having to rely on others if I do become totally blind. That frightens me most of all....but I will cross that bridge when I get there.

However, in the meantime, let it be written here that the next person who makes a stupid joke at my expense gets it in the f+++ing eye.

(oh yep and rant over...still no news on the job. Will let you know as and when!)