a bad eye patch

Everyone has their cross to bear, as I said yesterday - or might have done. Today I went back to Moorfields Eye Hospital to see about the advanced sub-acute not-so-intermittent angle-closure glaucoma. (And in the picture, yes, the blue thing is touching her eye. They give you anaesthetic drops.)

I should flash back to last Wednesday, when I went in for the second time in two days. My eye was so sore, and my vision so dark, I thought it was the glaucoma, but when I got there I was measured, tested, and then pooh-poohed, and told it was "just the eye drops" and that the side effects would "just settle down." I tried to explain how much it hurt, but they weren't interested. Four days later I was so ill (with a range of symptoms starting at eye-related and ending at joint inflammation and a temperature) I had no choice but to go off the eye drops altogether. It took a few days to feel normal again, but today I went in with, at least, a clear idea of what was bothering me. My eye.

The nurse was lovely, really friendly. Two very sweet doctors (one conducting pioneering PhD research intoglaucoma and genetics) remembered me, and I told the story of the poisoning eye drops but their horror (it turned out) was not to be transmuted into anything more substantial than a note in my file saying "possible effects from Pilocarpine." Had inital tests, went into hallway to sit and wait. For an hour and a half. I know it's not so long, but by the time I got called back in the hospital was getting to me, and I'd had time to think. It was yet another young doctor (they're all about 28, and trying to get ahead) and she, with no reference to my having spoken to anyone an hour earlier, asked me for my symptoms and "how I had been."

Cut to the exact same tests the nurse had just done. But 'checking the angles' hurts, and by that time I was feeling upset, and I couldn't get my eye to let her do it. The third time she failed I had to say, "I'm sorry , I'm just a bit surprised. I just told three people all this stuff in detail an hour ago! Didn't it go in the notes?" She gets up and goes over the way. Comes back and tells me to come over. I'm asked to sit down in the chair by the eye apparatus and there is a large man there. He looks rather engagingly straightforward.

He must be the consultant, but he doesn't introduce himself. He addresses me as "Mrs Evans."

I say, politely, "It's Evans-Bush, and I'm not married. It's Ms."

He stops what he's doing. He turns to face me full on, meets my eye, holds the gaze, smiles insanely and fakely, holds the smile, and apologises three times, one after the other. (But calls me Miss. I'm not Miss. I've been married.) It's as if he's channelling Margaret Thatcher. Well, this clearly is the consultant.

Asks the questions. Gets told the answers. Does the tests. They hurt. My pressures (I have to ask to be told) are up since my arrival, and they were high then; it's all very distressing. While he writes up the notes I cry a bit, but he doesn't notice. We're sitting, in effect, in a corridor. He tells me all about the parlous state of my eye, the laser treatment I have to have, with its risk of accelerating the scar tissue already forming on the iris (I have scarring on my iris - I never knew that could even happen), and the operation I might have to have "at some point in the future" (or sooner if the scar tissue accelerates) for which the particular shape of my eye is itself a severe contra-indication. He mentions the distinct possibility, in that case, of "serious complications." As always in these conversations, what we are talking about is whether I will lose the sight in my left eye. There's been talk of this operation for three years, though he doesn't know it; and I guess it's been hovering in the background since 1988, when they told me my surgical iridotomy "might not last forever" - though 20 years felt like a long time then. But I know more now than what they told me then about the shape of my eye, how tiny, how problematical it seems to be. So I'm still reeling when the consultant launches right into a calendar on his computer asking me when I can have the laser treatment.

At no point does he tell me the name of the laser procedure, ju7st as he has not told me the name of the possible future operation. But he does say that, in the event of having this unnamed operation, "we will both be going in there on an understanding..." His voice trails off. He's looking at diary dates.

Not next week, his wife is due to have a baby. Maybe the week after? I say - sharply - "you know, babies are just as likely to be a week late as to come on time."

He looks at me. "Fine, do you want to try next week? On the basis that I might not be here? Or shall we say, hmmmm... the 19th?"

I can't believe this. "Oh, let's go for the 19th."

In the middle of this conversation we are interrupted by another consultant (from the looks of him: pampered, baby-faced) who is looking for something or someone. My guy helps him out. Then, just as we're getting to the part where I go blind, Babyface comes back. More chat. Lots of smiling and chatting, while I watch politely, holding my tissues. My doctor apologises and we make the appointment.

He hands me a letter in 14-point type and closes my file.

I ask, were you going to give me something for the next two weeks? The pharmacist was talking about these newer-generation drugs. He says, "Oh, I don't think you need anything. I mean, how often is it really bothering you?" It's bothering me all the time, enough to get me to A&E, doofus. (I don't say doofus.) I say I can't read in the evenings, some nights it's a full-blown attack & I have to just lie on the couch or go to bed at ten. I do have a job, I have to be able to work, I have three kids, I write. (Plus, you know, I have this scarring on my iris? I'm trying not to let it get any worse?)

Last week the nice doctor, Anthony something, asked me what I do for a living, but not in a sense of managing my eye. It was just curiosity. For YEARS I have been asking these doctors about my glasses ("Oh, just go to the opticians" airy wave of hand), I've asked about eye strain, I've asked about things. I've asked. So here I am, at the gate at the edge of the desert, asking again.

I tell him I'm a writer. I say, "I write for my job, and I write when I'm not at work. I read. I have two books to review - I haven't even started one of them, because it's dense prose. You know? It's not like all I have to do is make the dinner!" He reaches for his pad.

I ask what he's giving me. He says the normal thing would be Pilocarpine, with my shape of eye etc, but he's giving me something else. You know. Nyocene, I think. I think he mentioned a side effect it might have on me, but I can't remember. It all felt too surreal. Anyway, I read the information on the bus coming home and it is flipping terrifying. Up to and including strokes. I won't take it.

I say, can I ask you something? I've prepared a list of questions: Is there a list of what actually contributes to the pressure in the eye? People keep casually mentioning things to me, like last week I was suddenly told I shouldn't take cold remedies. He replies, "well, there are a few things you shouldn't take, but they'll say so on the information slip that comes in the box. Decongestants, cold remedies, muscle relaxants, some anti-depressants..." (In short, anything that might actually make tyou feel better.) I say, what else? I mean, aside from drugs? He looks at me blankly.

So then I asked him about my glasses. Lately even with my varifocals I can only see to read if I wear my specific reading glasses. YES, emphatically, he says, wear the reading glasses. Yes, reading can increase the pressure. Bending your head down, the way you do to read, increases the pressure; he says to read if possible at eye level. He says when they want to induce an attack, they put someone in poor light and make them hold their head foward. (NOW they tell me.)

Every time he gets to the end of an answer, he shuffles the file as if to dismiss me. Every time I have to interrupt him and say, can I ask you something else? He says there's no point talking about the Pilocarpine, which the pharmacists tell me comes in much weaker strengths as well. There's no point: if I had a reaction on 2% I'll have a reaction on 1%. He's not telling me to stop reading (even though my eye vlearly is). Good light is of the utmost importance. Yes, the size of the print matters: the less strain, the better.

All through the nineties I was asking doctors at Moorfields (and Charing Cross) about eye strain and glasses, and it was as if they were deaf.

Well, then I reached the end of what I could think of. And he was clearly desperate for me to be off. So now I'm out. But I only asked my prepared questions, hard as that was, so I don't know what the aftercare is, how much it will hurt (although he did say "very sore," the timescale was "anything from a few days to a few weeks, or more", and he didn't mention pain relief), whether I'll need time off work ("very sore" may not "affect my vision" but it also doesn't sound good for "being an editor"), how soon they can tell if the laser has made the scarring worse, when the operation might be were it to come to that, the name of the operation itself. Will I be blind in one eye by Christmas? There has been no offer of a phone call before the procedure if I have any concerns in the two weeks before.* There has been no suggestion of talking to anyone about possible long-term effects (another euphemism, of course: no admission, even, of what we're talking about).

I did tell the doctor I thought it might be a little different, my case, from the old people he typically sees in there. I'm in the middle of earning my living, raising my kids, living my life. I have to work till I drop, I can't just take early retirement. I have no pension, I live in a rented flat. And I know I'll disagree when I'm old. I'll want my life then too.

My most curmudgeonly friend, the Darling Ranter, suggests I ring the RNIB. That sounds like a good idea to me. He says, "these people are just technicians."

Now: this guy, my doctor, is supposed to be something like one of the top four people in the world for my condition. That's got to be a good thing. I was told that by last week's doctor, and I hope it's true. The consultant says cheerfully that he will have to be the person who does my laser, and I believe him, and so we're scheduling it around his baby. And it's soon.

But what kind of treatment is this, where no measure, however small, can be taken to address distress and emotional trauma? Wrong names, questions answered under duress, never the same doctor twice, strangers interrupting conversations about how you may well go blind in one eye? If you were at risk of losing your leg, would they be so offhand???

So I left. I walked to the Angel. ~And I was lucky: my friend the Catwoman was in. I went and hadsome home-cooked dinner and then she took me to the pub. So I haven't been sitting here all alone all night. But no one ever asked if I would be.


*The PhD doctor from last week saw me as I left; she did say I could ring if there were any problems. But it wasn't part of the programme, she just happened to be passing. And she wants me for her study.