My biggest fear has always been going blind. The thought terrifies me. I can’t imagine not being able to read, watch films or see live theatre. It’s a horrifying thought. I started to get migraines aged 8 and in my teens had my first bout of visual disturbance. I was in a Biology lesson and everything went patchy and disordered; Bunsen burners and people’s faces mixing wildly and everything becoming slightly surreal. Twenty minutes later it was gone and I could see again and had just the throbbing headache and projectile vomiting to contend with. This became a common occurrence for me, with visual disturbances brief and warning of impending migraines necessitating a few hours in a darkened room.
About seven years ago I was leaving work and stopped to speak to a colleague when I noticed there was a little eyelash flapping in the corner of my eye. Frantic blinking and flicking at my eye resulted in nothing and the flicker persisted. Within a few hours I was laying on the sofa, holding my head, as a pain like a juggernaut tore through my left eye and the side of my head. I slept for a while, took loads of pills and it persisted. I had to walk around holding my eye, the pain was so intense. It lasted for three days, by which time I was desperate. The doctor, understandably, thought it was a migraine and it wasn’t till I woke up blind in one eye the next morning that I realised that maybe it wasn’t just a migraine.
The emergency doctor was dismissive, leaning his sweaty torso over the desk as he peered into my eye and shone lights.
“There’s nothing I can see wrong. I suggest seeing an optician”
“Sorry to be pushy, but I’m blind in one eye. Surely that’s a bad sign?”
I stumbled one eyed to the optician and managed to get seen. I was seen by three different opticians who all muttered a lot, pronounced me blind in one eye (but still tried to flog me a new set of glasses as my 'prescription had changed') and sent me off to the emergency eye clinic. The emergency eye doctor was a bit surly and it was only when he started being nice to me that I realised maybe something was really badly wrong. The phrase “...if there was some quite bad news would you want to know it?” alerted me further. Of course I wanted to know.
Apparently I had a swollen optic nerve, was unlikely to get 100% of my vision back and there was a 50/50 chance that I had multiple sclerosis. Queue a lengthy (three month) wait for a scan, hours spent in clinics, a hideously claustrophobic MRI scan, a test involving a wire being put in my eye and electrical currents put through it and a lot of blood tests. There was a lot of waiting around. Naturally I was worried. In my head it was only a few weeks before I’d be bed bound. I’m nothing if not fanciful.
I decided to research the matter. I checked out reputable internet sites, talked to friends who were health professionals and knew about neurology and tried to be patient waiting for my eyesight to come back and for my scan to check for MS lesions. Unexpectedly, after the initial shock and worry I began to cope. I managed to take in and listen to sensible advice and relaxed into the whole business with a peculiar fatalism. An opthamology registrar gave me a pep talk which helped. Reminding me that MS wasn't a guareteed route to severe disability. I’d already had an MRI scan three years before following a period when I was dragging my left leg and the neurologist wanted to exclude MS. That one was normal. The blood tests were normal. I actually stopped worrying about the thought of possible MS and concentrated on the issue of managing with one eye.
Unsurprisingly I took to the sick role fairly well. I mentioned my problem at any given opportunity, referring to it at least 100 times a day. My poor partner was sick of hearing about One Eyed jack and his traumas. I went back to work and squinted a lot, managing fine. I watched films, read books and saw sights through one eye. The only thing I hated was the interminable waiting in eye clinic. Each appointment would take a minimum of an hour and once they’d put drops in my eyes to dilate them I was stuffed, no television or books whilst I waited, just the illicit joy of eavesdropping.
I always insisted on going to appointments alone, being independent is an innate trait in me. I was caught out the first time as I staggered out with blurred vision and couldn’t count out my change for the bus or use my mobile phone to call anyone to save me. I had to ask an old lady for help in counting my bus fare. I think it was an old lady, anyway. From then on I’d go armed with the right change in a separate pocket and lurch wildly across the busy main road to the bus stop.
I was still half blind a month later and I insisted on going on holiday. My GP was dubious about me flying but on checking with eye clinic it was allowed and we jetted off to the classy bit of Tenerife. I’d read that it was classy and the bit of it I saw through one eye looked fine. It was quite Spanish and there were no cheap Irish bars or Bingo places. We went in February and it was warm and sunny, a respite after a long winter in England. We had the usual misadventures: getting lost a lot, having diarrhoea in remote locations miles from any toilets and ending up in a very odd nightclub doing improvised Salsa. All the things which make holidays fun.
We walked a lot (whilst I kept up a monologue about how hard it is to be blind). We did go to a stunning zoo which had an amazing penguin exhibit where you entered a giant freezer the size of a sports hall and travelled round on a conveyor belt looking at penguins doing funny penguin type things on mini glaciers. Naturally I only saw it through one eye. Did I mention I only had one eye?
On returning home my sight very quickly came back ending my month of one eyed moaning. I made a miraculous recovery, losing only 2% of my total vision. The MRI was clear too. There were no signs of MS, even though the other scans had shown I had some loss of the outer sheath on the nerves in my eye. My diagnosis was downgraded to possible MS or a viral illness of the eye. There’s no point investigating further yet as there’s nothing they would do yet in terms of treatment. It just means that every time I stumble or twitch I end up back in the scanner (4 scans so far). I once started to panic badly in the scanner, being mildly claustrophobic and decided to think of things to distract myself. Visualising kittens and Bambi didn’t cut the mustard so I decided to think about dirty sex with the man who played the doctor on “Lost”. This set me off panicking further as I suddenly wondered if thinking about sex had lit up an area in my brain on the scan and made them think I was a right pervert. It was back to Bambi.
There’s always a positive thing about any bad experience and to be truthful this was quite a scary time. Sometimes the positive things are very tiny and pale laughably in comparison to the crisis. In this case I learnt three things: 1) its pretty crap being on the other side of health care 2) I do go on a lot when I’m ill 3) I actually do have some resilience deep down. Hopefully these lessons will stand me in good stead but hopefully they won’t be needed for some time yet.