I’ve been laying low and not in the mood to see anything in the Gay Theatre Festival because I’ve a problem with my left eye, I’ve about 50% vision in it now.

It’s been an interesting journey of subjectivity versus objectivity. Back in January, for the entire month, I had a weird visual effect in both eyes that was a little camp – it was as if I had my own inner Tinkerbell waving her glittering wand around the edges of my vision. Along the way, seeing various doctors and opticians and ophthalmologists, it was an effort to try to explain my subjective experience to them, because they are trained to work with what is objective. My extensive notes and diagrams about what I was seeing were not read, they were just glanced through. But they were convincing enough to get me peered into many times with bright lights and microscopes, leaving blurry-eyed because of the dilation drops. After about three weeks, I was sent to get an MRI scan (thank you, VHI, for paying for it, although I have no idea how long I’d have waited without being on VHI) which came back with … nothing abnormal. Then, in early February, the firework shows faded, and my vision of the world became less glittery, to much relief.

But, two weeks ago, the glitter came back in the left eye, and within a week started to “solidify” into a distinct opaque spot, or scotoma. In addition, my vision became cloudier. After a frustrating few days trying to arrange appointments in the days surrounding a bank holiday weekend, I got to see a consultant. Before she had a look in my eyes, she was dismissive of my notes, of my subjective experience, saying she didn’t have the time to read them. However, once she saw for herself what was going on in my eyeball, she then got quite excited, and rang her colleague in the Eye and Ear Hospital saying “I’ve an interesting case for you”. Only after there is hard evidence does my subjective experience become of value to the scientifically trained mind.

So I’ve had loads of tests, hours and hours waiting around the Eye and Ear over several days, bloods taken, X-rays, loads of questions. I am the talk of the hospital doctors – when I was there, they knew in advance I was on the way, and people were eager to look at the photographs, to see what this rare case of posterior uveitis with white dots in the lower half of the retina affecting the optic disc and nerve looked like. When I saw the photographs, on the computer monitor, I asked the doctor could he email them to me, which he kindly did.

Naturally, I’ve been over-googling, and can’t come up with any answers or definite prognoses, except confirmation that uveitis is difficult to pin down, and in many cases, the reason is never found. They can’t tell what’s caused the inflammation inside my eye, and it could be any number of things. It’s now a case of making sure I don’t have an infection, before they give me steroids; apparently giving steroids when there is an infection just makes it worse, not better. Now, the evidence-based scientists are methodically going through all that is known, step by step, ruling as many possibilities out as they can, one by one.

I’m writing about something so personal here because, in the face of all those well-meaning, hard-working, research-orientated scientists trying to get to the bottom of what my problem is, I feel like striking a blow for subjective experience. I am not sure that anything could have been done differently in January when I was having such a vague and, frankly, silly experience, whether it was a missed opportunity to stop whatever it was developing into a sight-diminishing situation now. I doubt it. It seems to be just one of those things. I’m not anxious now – I was more stressed in January because it all seemed so impossibly uncertain, even making me question my own sanity, considering psychosomatic illness as a cause.

In terms of stress levels, the curious thing was that it was something quite unconscious in my consultant’s tone of voice that had the most calming effect. When she was on the phone to the Eye and Ear and enquiring which registrar was on duty the following day for me, she called out his name with distinct delight, and rang him on his mobile straight away. Her evident trust in him, and confidence in his ability, did more to reassure me than anything she could have said to me directly.