Although the pool is warm the cold wetness as it soaks into my hair makes me shudder. I ease myself back and push off the side leisurely rotating my arms in a slow backstroke. I keep things unhurried so as not to let any water droplets blur my goggles. The echoing shrieks are muffled as the water laps around my ears, cutting me off from the outside world.
As I traverse the pool I stare up through the glass ceiling noticing that several long hairline cracks have spread like an intricate spiders web. Some of the glass has yellowed with time, and there is that greenish growth you often get around swimming pools collecting in the seams.
But even here in Tunisia the sky is a vivid blue through the steamy outlook, I always acknowledge to myself how that is something that has never changed; the sky still looks exactly the same as it always has, infinite limitless, and blue.
The kids are buzzing around us like flies, interrupting each other to tell tales from kid’s club. I play eye spy with the little one, drawing out just a little longer on the sun lounger before his fizzing energy becomes too much and propels us off.
“T is for tree”, I suggest, glancing at the tall palm trees swaying in the light breeze on the horizon, wondering if he would categorize them as such. A shake of the head provokes a comedy furrowing of my brow. “T is for towel then.” I offer triumphantly patting the sun lounger beneath me, secretly pleased at my guess.
“Nope.” Is his blunt reply. I now know to shrug and give in; his delight in beating me is palpable.
“T is for tattoo Mummy !” he shrieks, pointing wildly over my shoulder.
I try to suppress my smile but it climbs up onto my face anyway. I delight not only in his innocent and astute observations of our hotel companions, but also in his total lack of social awareness.
That is something which at the grand age of four, I have no intention of correcting.
I think faster; but I walk slower these days.
It’s not just the obvious curbs or uneven paving that unbalances me now, it’s more the unapparent, the hidden snares that stop me in my tracks.
Walking into the local bookstore I am instantly wrong-footed. From the dim interior a disjointed female voice cheerily calls out. I cannot see the body that the voice belongs to; so I don’t know if she is speaking to me. My eyes will never adjust to the light; they simply can’t see enough.
I waver, uncertain, feeling like I am blinking in a spotlight on a stage I do not want to be standing on. I am at a disadvantage; and that is not a place I often allow myself to be.
You learn to be resourceful, humour is my cohort, often smiling and elbowing me out of trouble. The monsters help me too, in their own brutal and compassionate way.
“Mummy’s eyes are broken.” The little one announces cheerily in our busy local cafe. I smile ruefully in the ensuing lull, looking heavenwards to soften the blow.
He’s right though; a bit of me is broken.
Inspiration manifests itself in strange ways. Occasionally it is a child running smack bang into me at school pick-up time, grinning and gleeful. Other times it is a persistent idea creeping, crow barring its way into my head when I meditate, insisting that I surface and write it down.
But I like the lemmings best.
Little creatures that pop up, sniff the air; alert yet eager. Unsure and tentative, they dart erratically around my mind, an impossible curiosity driving them on.
Synaesthesia, cymatic art, brainwave entrainment; unfamiliar and unpronounceable words yet a truth rattles around inside these concepts, and my inner lemmings as dogged as ever, zip in and out, trying to find the connection.
I have my own personal light show going on inside of my head sometimes; actually, to be honest it’s going on for most of the time.
I didn’t really notice them to begin with, these sudden pin-prick flashes of light, what with all the other blurring, crackled and fragmented images I had to decipher. Over time though they became unfailingly familiar, part of my new normal, often occurring when I concentrated really hard on something.
There; that was one.
Sunlight was a common stimulus too; summertime provided me with a private invite-only firework show on numerous occasions. Barking at the kids or passing the time with a neighbour, none of you had any idea of the miniscule explosions, the shooting and spitting sparks that were dancing intermittently between us.
Only the neurologists furrowed their collective brows, asking if this phenomenon occurred more in one eye than the other; but even they didn’t really explain why these sparkly pinpricks punctuate my world.
Phosphenes; an unusual optical occurrence, also sometimes know as ‘prisoner’s cinema’. An apt description that inadvertently elbows the coiled serpent that still lurks within the depths of my gut; I ponder more quietly, not wanting to fully wake it up.
Even though this really is happening to me, I still can’t help but be fascinated by yet another weird visual manifestation…
Phosphenes – my own personal light-show.
Fuzzz…There we go again…
I have a mini voice recorder skulking in the bottom of a drawer full of whispered secrets; some murmured so quietly they are no more than a spirit’s breath. I still can’t quite fathom how such vast pain can fit into such a small space.
You don’t just tell your story; it tells you. I’ve come to realise this as I have listened back to my voice; sweat forming on my body as yet again I relive the terror of my sight loss.
I’m not quite sure what story I am telling; but I know it is an important one. It is a tale I knew I was going to tell, right from the very beginning.
I ruminate yet again on my situation, on this voyage I have unwittingly set sail upon. The very uniqueness of my experience, its exceptional rarity, is the story.
I ask myself: Why did this happen to me?
And I know the answer is simply; because I know how to tell the story…
Let me introduce myself, I am patient H69. My name is irrelevant. This is my story, and believe me, you’ve probably not come across a story quite like it before.
It’s not just a story about going blind, yet of course it is. It’s more a story about what it’s like to have your visual world rebuilt one wispy layer at a time.
My response to my illness was just that – a response. I chose to challenge everything that happened to me, to investigate it and in turn understand it. I didn’t do that on my own either, and the people that have helped me are part of this story…
It all started in September 2012, a time I now consider to be back then,…before…
Indeed, September 30th 2012 was to be the last day of that life; for another life was to about to start the next day. That is the life I now lead…this is the story of my Second Sight.