Friday, 1 February 2008

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

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.

3 comments:

Louisa said...

Now Tanvir I know you are not one for sympathy but I am so sorry. I had no idea and for that I apologise, what kind of friend does that make me! I wish I had of known and I would have joined forces with Teelo and killed them all!!! How dare they the .....various expletives here that I know google wud not like!
Go to Zambia with your head held high Tanvir......you are worth a million of them.... i remember a time at our favourite bar when you showed me with the aid of a device what it was like to see through your eyes.....at the time I thought to myself , wow that is really helpful of you Tanvir....typical of you always wanting to help us ignorants out there to learn....little did i know it was probably becoz you had been accused of faking ....... oh my god....am reeling in shock... it is a cruel place. I love my homeland but it has certainly dealt out some harsh blows to me and my loved ones.
You are loved , achingly so, by so many..am sure i can speak for a few of us out there... go to Zambia , enjoy time with your Dad..enjoy the sunshine, the birds singing, the crickets, the night sounds, (ok i know this sometimes includes a gun shot....in my own warped way i miss that sometimes!)knowing that you will be leaving the arseholes exactly where you left them those few years ago...in an empty place. love you girl xxx

ACGMess said...

You are a brave woman for saying all this out loud. I can't believe how cruel people can be - what is wrong with this world? We need more of you and less of them. Wish I could kick the shit out of every last one of them for you!

I hope your trip home is not painful, that you enjoy being with your dad and hearing and smelling and seeing things that fill you with peace and love.

You are very loved, my dear. Perhaps you just need to be in a different country. Cough, cough. Not that I am suggesting you should come and visit, or anything...

xoxox
Amrita

Suzie said...

Ok I gotta curse. Fuck those nasty people let me at em. I mean it! People are so rude and mean and you are so fun and great and you don't deserve to be treated that way. I am glad you left it was the best thing for you though I know it was not an easy decision. I am so sorry the eye thing hurts so badly you don't deserve that either. I think we should let that nasty woman and those shitty men have a try at the pain for a little while and see how they fair, Blah ughh and lots of spittle flying!