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.