What if we could speak to our medical conditions? They have known as intimately for our whole lives. What would we say to them? What would they tell us? (1279 words)
He stood alone, waiting. The chill wind whipped around him viciously, as if something was daring him to peer over the edge of the rooftop, for a stray gust of wind to tug him over, plummeting forever into the void. He was not afraid.
He had just watched the sun setting over the ocean. Broken shards of sunlight clinging desperately to office windows as it slowly disappeared. The night sky was clear, the stars bright. He knew this skyline, even though he was a part of it. Manhattan, he must be on one of the big office buildings, but he had no recollection of how he had gotten there. All those lifts and stairs. There was no smell of burning like the last time he was there, but a slightly metallic tang caught the back of his throat, like midnight rain, or morning blood. He didn’t need to think about anything anymore, he knew exactly why he was there.
He heard a self-conscious cough behind him and turned slowly. Someone had been watching him, he didn’t know for how long, but he knew exactly who it was. The details of the figure’s face were hidden below the brim of a black hat that seemed to be part of the unnatural shadows surrounding him. As he raised his head to speak, a brief reflection of moonlight betrayed that he was wearing spectacles.
“Is this the end Richard?” The figure asked teasingly. His pronunciation was soft and deliberate, of one who is not a natural speaker of English and has to reorder their sentences. “Have you finally given up? I always knew this day would come, it always does.”
Richard answered in a neutral tone, he was tired and wasn’t there to argue. “Yes, it’s the end, for both of us.”
“Then you knew who I am.” The figure demanded smugly.
“Yes, I know you. You have been there for most of my life. You took my dreams and replaced them with fear for what the future held. You brought me nothing but constant pain and empty hope. You watched me fight as control slowly drifted away from my body. I hated you so much.
“Such a pity it was all in vain” he sneered from the darkness.
“I spent so much of my life fighting you I had to give you a presence, a face. Richard peered into the gloomy shadow. “Step forward, I want to see what you look like. I want to look into your eyes.”
The figure chuckled and stepped forwards revealing a heavily built, middle-aged man with a shiny round face and round glasses. He wore a black leather trench coat and a black fedora, which he pushed back to mop his brow with a limp white handkerchief. His thin smile, a gruesome slash.
Richard stepped backwards, shocked and physically repelled. “I know you,” he stammered.
“I have many different forms, this form, you chose for me when we first met, do you remember? You were just 14.” He added with a breathless, excited whisper.
“You were the cruellest, sadistic and malicious person I knew. Pure evil.”
A sickening smile stretched slowly across his face. “Yes, but you didn’t know me, you were only a child. The best you could do was to take a shallow character from a film.
The figure looked around, gesturing with outstretched arms. “And is this where you have chosen for it all to end? Such a dark and lonely place, all alone up here with me. But you always had a taste for the dramatic, didn’t you?
Richard stayed silent, letting the taunts wash over him. Then he spoke.
“Something changed as I got older. I realised I had taken the opportunities that were available to me and that the only one stopping me from living was me. Once I stopped listening to other people telling me I was unwell and sick, I realised I had been living all time. If we live in the moment and are grateful for what we have, we can be happy.”
The figure gave a childish giggle. “Bravo. But you can’t believe that, it’s just your fear, it’s what you need to believe.” He continued in a softer voice, “I had a sense that your understanding was, softening, Richard. You recently described me as,” he paused, as if searching for the exact words, ‘beautiful and terrible’- a scene from another of your films.” He paused. “Never forget that I am still terrible” he shouted wildly, closing the distance between them with surprising speed and pushing Richard firmly in the chest with both hands.
Realising his wheelchair wasn’t nearby, and offering no resistance, Richard stumbled, collapsing a few feet away from the edge of the rooftop. Once his breath had returned, he raised his head weakly and appealed to the figure. “Please, I have no anger left for you and so little strength. I am so tired. Come closer.”
The figure shuffled awkwardly toward him and knelt down, his leather trench coat creaking with the movement. He removed his hat and mopped his brow with the effort. “Well, what is it you have to tell me?” the figure snapped. Richard whispered something, but the figure could not hear. He had to lean in, inclining his head slightly.
“I achieved, loved and was loved beyond my dreams. I am thankful to have experienced that.”
The figure looked disgusted. “This is nothing but a surrender! You’re just scared.”
Richard smiled and looked into the figure’s eyes. “No, I am not surrendering, I am recognising that I cannot win, I am letting go with a grateful heart, and that’s different. I have found strength and peace in myself. I’m not scared of dying because I accept it. I wanted to say I forgive you and I’m grateful to have known you. Thank you.” With those words, a gentle smile settled across Richard’s face.
After a long silence, the scene around them began to change. It was now a warm summer’s day, they were in a glade in a forest. The lazy golden sunlight dappled the floor and two butterflies floated by. The scent of cow parsley hung in the still air and water burbled nearby. The dark figure looked calmly at his hands as they began to glow, his form was changing too. The round glasses disappeared and his features softened. His leather trench coat and dark suit transformed into a robe of the finest gossamer with intricate golden lace patterns around the neck and sleeves. The material could be made from rays of the sun itself. Long blonde hair cascaded over her shoulders. She was now a beautiful elf-queen, another character from one of Richard’s films.
She spoke in a rich, commanding voice, as if to an unseen audience. “I am Friedreich’s ataxia. I took nothing from you and wasn’t trying to hurt you. In this life, some must be tested beyond their limits, I am but one of many tests. All struggle, many fail – they cannot see past their resentment and anger – it blights their lives and they remain unfulfilled. Amongst those who are lucky enough to remain untouched by my brothers and sisters, many reach the end without ever knowing how to live.”
The figure cupped Richard’s face with her palms and reverently closed his eyelids with her thumbs for the final time. “You’ve done so well,” she whispered, kissing him tenderly on the forehead and rising slowly.
Richard C Brown MBE – February 2025
World According to Me: 