Thursday 27 March 2014

Looking Less, Living More

This time last week I was an absent-minded twenty-five year old guy trying to work out what’s happening in his dizzying and erratic life. Now, I’m asking the same questions having made no real advances in my dilettantish quest. The only difference between then and now is that I can no longer see as I did a few days ago.

Over the weekend, I suffered a relapse. It loosened a single, minute muscle that helps move eyes from side to side. I can look to the left with my left eye, but the right eye is unable to follow suit. Similarly, my right eye inches towards the right whilst its twin is stopped in its tracks and fails to move in the same direction. When I look directly in front of me, at my nose for instance, my eyes do a little jiggle before they sit next to eachother like the old buds that they are. Whilst this happens, my eyes cross, I feel a sharp pang in my brain followed by an undetectable, inaudible clicking sound in my head signaling my eyes’ alignment once again. This last movement clears up my vision as if it were Google Streetview after the page loads: foggy at first then it’s clear once you stop moving and looking around your crush’s neighbourhood.

I found that it helps to cover one eye and have the other do all the work. At first, I did this using my palm, then I covered it with a floral eye mask that reminded a friendly shopkeeper of Pudsey Bear, the eye-patched chugger-cum-mascot the BBC wheels for Children In Need – quite a cheering compliment given my uncertainty towards my sudden and uncontestable change of look.

After several trips to an eye hospital’s A&E and orthoptics clinic, I was told I have suffered a relapse that triggered what is known as Bilateral Internuclear Ophthalmoplegia. They also gave me a pair of glasses with a sticky material covering one lense so that it looks as though I’ve been in a steam room. This, I was told, would allow my eye to get some air whilst it is rested from doing any real vision work. Alternatively, I could wear an eye-patch that completely shields the eye from any light or vision. When I wear the eye-patch, I would still blink, but I don’t see much save for some grey and black swirls akin to those you see when you close your eyes and rub them, an illusory meteor shower glittering the weary inside of my eyelid.

All movement around the house and on the street is slow and stuttering. My judgment of distances has shot to hell and I’m forever bumping into open doors, doorframes and a whole host of stationary objects that evade my narrowing line of vision.

Internuclear Ophtalmoplegia usually occurs amongst those who’ve suffered a stroke. Cases amongst younger patients such as myself are often caused by Multiple Sclerosis. I must admit that in the seven years that I’ve lived with MS, I haven’t relapsed in a way that has hammered home the impact this disease could have on my life – until now. I may have been unstable on my feet, forgetful and achy, but never visibly struck by illness.

The prospect of spending the rest of my life like this, or, even worse, with no vision at all – terrifies me. It’s not a fear of losing my sight per se, I’m scared I won’t be able to see the darling of my damaged eye flourish, grow and become an independent, loving and unrestrained spirit. And though the idea of (very slowly) running around the park with her pretending to be a pirate would delight her and other children in the vicinity, I confess to being wary of the new boundaries restricting my mobility. The extent of my involvement in my fledgling family’s life is the cloud that shrouds my spirits. That said, and naïve and short-sighted (poignant pun?) though I may be, I don’t care what besets my ailing body so long as my mind is intact and able to compose intelligible sentences –whether by writing or dictation à la Jean-Domonique Bauby. That, for me, should be enough.

I’m aware of the considerable anxiety this relapse has brought those around me, and that is an added worry for me. I don’t wish for people to panic, nor do I want them to pity me. I’m the same person. I haven’t changed one bit. I’m just a little slower when I move and I will occasionally don a piece of unconventional eyewear.

This time last week I had wanted to write but didn’t find the time to. Today I have written a few modest passages with one eye, and, in the process, have unburdened myself of quite a spiky thorn I was handed over the weekend.

Things must be on the up.

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