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!)