yahel, d3 -- fin

They told me my body’s broken ––

–– that it’s not compatible with an easy life. That my genes are bad, but there’s nothing I can do about a body programmed to malfunction.

They rattled off numbers from a piece of paper and cast accusatory glances at my mum. Part of me wanted to tell them it’s not her fault – it’s not fair to pin all the blame on her. How was she supposed to know she was housing mutated genes, after being told her entire life she’s nothing but perfect?

Another part of me couldn’t help but point out if dad hadn’t fallen for her long hair and sweet words in the first place, none of this would have happened.

But then, I wouldn’t even be here at all.

But then, I wouldn’t be so unhappy. So pitiful. So helpless.

The contradictions pile up. I don’t know which is worse.

They threw around big words without watching where they fell. Every single one, a punch to the gut – a permanent bruise blossoming in their wake. Words are weapons, after all. Even if I’ve never really understood what they meant ––

Optic Neuropathy. Mitochondrial Disease.

–– just that they’re supposed to hurt. While dad spent his nights at the library searching for answers in leather bound books, I lay in bed and cried and cried and cried. It wasn’t fair ––

–– as if anything ever is. All that mattered was that it was happening, that my life was changing, and that there was no cure for it.

(Not yet, anyway.)

They didn’t help me.

They ––

–– the doctors, who I once thought I would be, who poked and prodded and shone bright lights into my retinas, who stared at me like I was their own personal self-help project. They sent me for scans of my brain and orbits, ordered blood tests where I’d be forced to sit and squirm with needles poking into my skin and searching for answers. Each time, they’d send me off with the pieces of myself compressed into a small white folder.

A diagnosis I couldn’t even read for myself.

I miss the view.

For all my parents’ career successes, we were never a family of wealth. We were comfortable, though, and I never took that for granted. We didn’t need a fancy house or expensive clothes to make life worth living. I’ll take a house of love over a castle of ice any day and know how lucky I am.

It wasn’t until after I was diagnosed that we started to feel the pressure.

.
.

Dad has always been special – been told his whole life that he was destined for greatness. A marvellous mechanic, able to bring any blueprint to life with enough time and craftsmanship, both of which he held in abundance. A child prodigy, genius incarnate, he’s been called every synonym for Poindexter you could think of – has the awards to prove it, every single one of them displayed proudly in his study.

He was on the brink of promotion into the Capitol stratosphere when I got the diagnosis. We were meant to be celebrating him; instead, we were mourning the death of my past self.

Something true about my father is that he doesn’t know when to quit. He sees a mountain and promises to climb it, no matter if it’s never been scaled before. So it was inevitable that he put his dreams on hold to set out on his most ambitious mission yet: to restore his son’s vision.

First came the research. Hours and hours of pouring over tomes in the work archives as he grew our spare room into a library of his own. By now he’s read every book that exists on axonal pathfinding, visual processing, the anatomy of the human eye and the human brain alike. The knowledge, used as building blocks as he made the transition from library to workshed.

The devices came next. Glasses with frosted lenses. Implants that sat like contacts over my pupils, catching scattered light and abrading my corneas in the process. An infrared laser beam mask worn whilst I slept, designed to reactivate my dead RPE cells.

None of it was safe.

I tried them all.

I wore each failure as my own.

I sat by, blindly watching my dad fall into a spiral of self-doubt. I’m sure he drove himself to the brink of insanity those first few years. I don’t think he’s ever really recovered.

That’s something I read about myself, before the world went dark: the human soul can only take so much disappointment before the mind catches up. It’s a disease that runs deep – once it’s there, you can’t escape.

I would know.

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As dad started to give up on his mission for artificial vision, mum took the reins on my health. Where dad spent all his time buried in books and developing new medical devices, mum took me to countless specialist appointments hoping the so-called experts could tell us something we didn’t already know. She immersed herself in the world of medicine, reading every RCT she could, weighing up the pros and cons of every new clinical trial under the sun and filling her head with the names of new drugs and promises of hope.

Lumevoq, Idebenone, Visomitin.

They don’t tell you about the side effects that come attached to those big, scary words. About the splitting headaches and the phantom limbs every morning after swallowing down two tiny yellow pills. About the waves of nausea and being doubled over in the bathroom for three days after another intravitreal injection, just to be repeated again a week later with nothing to show for the suffering.

Not even a different shade of grey.

But I didn’t complain once; I wasn’t the only one on this journey. I could sense how each dead end wore my parents down further, and I’d do everything I could to change the fact. Just one more tablet. Just one more needle. Just one more MRI. Whatever it took to change fate --

-- until time ran out.

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Every journey has its limitations. The end came as bills piled up so high I felt like I might suffocate. We went many months with the bare minimum, struggling to make ends meet just for another shot in the dark, something overlooked, some new miraculous development that didn’t exist yet.

In the end, it all comes to a halting stop.

It’s been four hundred and seven days since my last follow-up, but I gave up hope long before that final shutting door in my face.

In another lifetime – one where dad followed through on his promotion, one where mum didn’t cut back her hours at the hospital – we might have had more. More opportunities, more chances, more wealth.

But that was not the life we were destined for.

There is cause and effect to the world. Sacrifices have consequences; too quickly, our savings dwindled down to pennies, and eventually dad was left with no choice but to put his extensive research on hold and return to work. Of course, with the promotion long gone and no chance of slotting back into the position he gave up years earlier, he was back at square one. Running errands he was too brilliant for, reduced to a lackey without any intellectual stimulation.

Humiliating. Infuriating. I feel the anger he conceals. He won’t call it giving up, but that’s what it felt like. And even though I can’t see it, I know his eyes don’t shine as brightly as they did before. I hear defeat in every other part of him – the fatigue in his voice, the idle wandering from empty room to empty room.

‘Cause most nights, I can’t sleep. And most nights, neither can he. But we don’t acknowledge each other in our insomnia. We’ll pass each other in the morning and act none the wiser – he’ll pretend like he didn’t get a total of two hours of sleep, and I’ll pretend I don’t already know.

We go on.

The tides change.

The things that used to matter lose their meaning.

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I don’t know if he regrets it. The years wasted, the career he could have had, the new man he’s become – someone who no longer lives for pipeline Capitol dreams and a Nobel Peace Prize. He’ll never say it was my fault, but I think I know what I’ve done. The path of destruction leads right back to me. I know deep down I’ll always feel the guilt, the pain, heavy in my chest.

I’ll forever be the one puzzle he couldn’t solve.

His only son, his only failure.

Maybe I didn’t pull the trigger, but I sure as hell supplied the gun.

“It’s okay dad.” A hand held, the rising pressure, I try to believe my words twice as hard, for the both of us. “Really.”

I’ll fix it.

1

1

7

7

8.

How the weight of the change in the world can rest solely on the shoulders of five little numbers.

I don’t remember when the hallucinations started. All I remember is the flux of feelings I hadn’t felt in a long time. Hope, disbelief, fear. One day the world was black, the way I’d accepted it would remain forevermore.

Then, all at once, a mirage: there were colours again.

“Mum! Dad! I’m cured!”

The memory stings, salt in an unreachable wound, coated in naivety. But the moment felt like a new beginning – a way back into the life I’d lost. After living in shades of grey for the better part of two years, the blue and white pixellated mosaic felt like an answer to my prayers and tearful, sleepless nights.

For twenty seconds, I lived in the glow of hope, waiting for the rest of the world to come back to me. But then the darkness peaked through once more – unrelenting, unyielding. The final curtain call on the very last shattered pieces of my dreams.

The doctors gave me another label after that – a promise that I was still sick. This wasn’t a miracle. There would be no miracles for me.

Charles Bonnet Syndrome, they labelled it. “Blind people experience it,” another reminder of my mortality.

“Your axons don’t stop shooting,” they explained, “even if they don’t work the same anymore. They’re not dead, just damaged,” the irony isn’t lost on me.

Deprived of energy, so they make their own stimuli. “Electrical impulses designed to fill in the gaps of your imagination.” If anything, they’re working harder than ever now. Said reassuringly.

Sad smiles filling the room, “you’ll get used to it,” the brief moments of reprieve, sporadic and staggered. I so desperately wanted to believe the doctors. For a while, I relished the diagnosis. Gave myself something to look forward to – something to break up the constant monochrome landscape. But now, my life is permeated by a crawling unease. I’m constantly living on the edge of anticipation, waiting for something that might have run its course. And then, when the familiar pixels do come back to me again, there’s the rush of hope of the split second where you wonder that maybe this is the time you’ll be cured – that the colours are back to stay. But they never do. Disappointment hits like a train, always. It hurts a little more every time.

It didn’t take long for the splotchy colours to shift into bigger phantom images. Half of a butterfly wing. A boy on a bicycle. A dog playing fetch. Harmless hallucinations, until they weren’t.

Girls with exploding heads and gouged out eyes. Half-human, half-animal hybrids with elongated facial features, distorted beyond recognition. Soldiers marching, disappearing beyond the hills as they ready themselves to fight an inevitable war with guns pointed, aiming at me.

I still wake up screaming some mornings. Each time, I wonder if the horror that grips my heart at the sights of mutants and militia is a fair price to pay for seeing something again.

I think I see me amongst them. Those soldiers, marching past the horizon. Stronger, braver. Better. And that’s how I know --

-- none of it is real --

-- and I wonder if anything ever will be again.