The first white light was so brilliant, I feared it had burnt my retinas. Even though I closed my eyes it was still there. It seemed to pull me forwards as if it had a magnetic attraction. There was someone there; a shadow at first, then a dark silhouette and as I came closer it took the form of a man. He held out his right hand for me to grasp and beckoned me with his left. Though I had seen only photos of him, I knew it was my father. He had died of a stroke, aged twenty-six, when I was three months’ old. I reached for his hand and was almost touching it when it was abruptly snatched away and everything went dark.
The second white light was not so brilliant but it still hurt my eyes. There were vague amorphous shapes milling around at the periphery of my vision. I could hear muffled noises that sounded like recorded conversation slowed down. I felt frozen, immovable as if I were chained to the bed. Yes, it was a bed. That was the first realisation as to where I was. Time passed, though I had no knowledge of its speed. The light was constant, the shapes and the noise came and went. At one point, I thought that I heard my name mentioned, “Are you there Stephen? Do you know where you are?” Were they talking to me, or to my father, or to my son? Stephen had been a family name for five generations. How had I known that?
The light began to annoy me. Its ubiquitousness inflamed my passion and I grew to hate it with a vengeance. Once it disappeared and my world became blackness, inviolate darkness without end. I tried to scream for my light to return, but I could not make a sound. I had no pain, in fact no feelings of any kind. I wasn’t hungry or thirsty. I didn’t need the bathroom. I couldn’t even make myself horny. I simply existed in a black nothingness.
In the beginning was the Word. And the Word was Stephen. I knew it was me now that they were searching for when the light returned. I remembered me; tall, slim, good-looking, modest… I had been a big hit with the girls, until one particularly beautiful creature had secured me all for herself. I didn’t mind; the sex was great. I couldn’t feel my penis. I couldn’t move my hands to search for it. I couldn’t move my eyes to look for it. There was only that damned light.
Did I sleep? The next dark period seemed very short. There were wisps of colour in my memory. I could still dream and in my dreams, I ran bare-foot on grass and smelt its new-mown fragrance. I rolled in the hay with Sarah and knew her love. But there was always a darkness on the edge of perception; a nightmare struggling to take hold. I watched my own funeral; looked down on myself in my coffin as the lid was nailed down; saw the wooden box lowered into the ground and the earth piled on top. It was dark and oppressive inside the coffin. I couldn’t move and I couldn’t breathe and the terror grabbed me, squeezing my heart so tight that I thought I must die. I woke up screaming again but still I made no sound.
It came back to me, bit by bit. I reassembled the jig-saw of my past, piece by piece, memory by memory until I knew who I was and where I had come from. I was intelligent enough to realise where I was. I had always hated fluorescent tube lights, and now there was one directly above my hospital bed and it was the be-all and end-all of my existence. I had partial vision, some hearing, no sense of smell or taste, and absolutely no sense of touch. I couldn’t move a single muscle. Was I paraplegic? Had I suffered an accident? How had I got here?
During the next dark period, I tried to sleep but failed. I tossed and turned metaphorically but lay as still and as quiet as the grave. In the darkness, my thoughts turned to death. Surely death would be a relief from this prison of mine. I dozed and saw my head in a jar of liquid, like on an animated TV program I had once watched. Sarah was taking me home and she dropped the jar as she lifted me out of the car. The glass shattered, the liquid spilt and Stephen’s head was splattered on the ground like an over-ripe water melon.
A man in a white coat was shining a light directly into my eye ball. It irritated me. I tried to tell him so but nothing happened. I screamed internally in frustration. Then I realised that my vision must have improved. I strained to hear and I could begin to make out muffled words. One voice was strange, but the other was achingly familiar.
“I’m sorry, Mrs Gawkrodger, there’s no sign of consciousness. Only the machines are keeping him alive. It would be the most merciful thing to do to switch them off. Let him pass peacefully, mourn him and then rebuild your life.”
They were talking about me like an old cast off sock with holes in the toes. Throw it away and start again with a new pair. It shocked me. And yet, death seemed so welcoming. I would meet my father.
“No!” It was a scream more than a word. “He’s not going to die. I won’t let it happen again. His father died when he was a baby and he never knew him. I won’t let it be the same for his son; for our son.” The words deteriorated into raucous sobbing, followed by the sound of a nose being blown. “Please give him more time, doctor.”
“As you wish, Mrs Gawkrodger, but his stroke was massive and there is no chance of recovery.”
An eternity seemed to pass with only the light and vague sounds that suggested she was sitting by my bed. I desperately tried to move my arm or my leg; to signal to her that I was still here. I could do nothing. Eventually her dark shape hovered over me and she whispered something I could barely hear. I supposed that she gave me a kiss, though I felt nothing. I replayed her words over and over in my head. “I love you.”
The boredom was threatening to drive me insane. For a time, I managed to console myself that I was lucky to have some sight and sound. I imagined how awful it must be to be conscious yet have no senses at all. I supposed that it would seem like a living death – you would think that it was death but there would be no God or Devil to end the dreadful loneliness. Perhaps you would conclude that you were in hell. You would relive your entire life over and over searching for the reason why. You would go mad in the end. I wished with all the power of my mind that someone would bring me a radio. At least then, I would have something to occupy my mind. Music would be nice. I thought about my collection of albums. I visualised each CD in turn, striving to remember the play list and then I listened to each track in my head. It was working quite well until I got to the Eagles. Have you ever had a song trapped in your head all day, going round and round, unable to shake it? I heard Hotel California a thousand times and each time I heard ‘You can check out any time you like, but you can never leave,’ another nail was hammered into the coffin of my sanity. And all the while the light tried to burn a hole into my brain.
I was never a great reader, but I remembered reading about Julia Tavalaro. My sense of recall was greatly improved; it was all I had to focus on, other than the light. She had locked-in syndrome and I was certain that I must be in the same situation. It took her six years to convince her carers that she wasn’t in a vegetative state. She became a poet and an author after learning to communicate by blinking her eye, while someone held a board containing simple words and letters. Eventually, she was able to move her head enough to use her cheek to operate a computer. It gave me a faint hope, but how long had I been here? Could I survive for six years? I reread the few books that I remembered in my mind. We had studied Great Expectations at school and I hadn’t really appreciated it. As I reviewed it, the greatness of Dickens’ writing was revealed to me. I had despised her before but now I empathised with Miss Havisham – abandoned, alone and trapped in her own limited reality. It depressed me.
It is difficult to express how my mind worked having emotion without feelings; joy without pleasure, agony without physical pain. I had no physical feelings but I still had emotional responses. I experienced panic without the physical adrenalin rush; fear without the shortness of breath; occasional joy, such as the memory of my son being born, without physical gratification. I longed for the touch of my wife and if I could have felt it, my heart would have ached. Instead my brain would have registered a sort of melancholy. I envied Miss Havisham her ability to feel the pain of the flames. I yearned for the peace of death and the final extinguishment of the light.
I tried very hard to remember pleasure; the taste of chocolate and red wine; the feeling of orgasm; the experience of Australia winning at cricket. I would do it when the light went away, before I slept, and then my dreams would be guided to reward me. In the end, I was more alive when I slept and my wakefulness was a living nightmare. I played for Australia, scored centuries and took hat-tricks. I realised that fantasy was preferable to worrying about reality.
Soon after I retired as the new Don Bradman, I decided to write a book. I created my own world, with its peoples, cultures, languages, history and geography. I invented my characters, who lied, cheated, fought, fell in love, and eventually lived happily ever after. I had heard it said that sex is mostly in the head. While that may be true, I can assure you that without the physical stimulations and responses it is a waste of time. My attempts to relive my past conquests or fantasise about new ones for myself or my characters gave me no pleasure at all.
I lost all sense of time. I tried to count the dark periods but couldn’t keep track until I visualised a prisoner scratching a mark on the whitewashed wall of his cell every day. Sarah visited regularly. I knew by the farewell kiss and the three little words she spoke. Sometimes, I heard snatches of her conversations with medical staff. Always, she resisted their suggestions to turn off my life support systems. I wondered what I looked like with gadgets and tubes hanging off me. The shadows came by on a regular basis. They were blurs who moved rapidly in and out of my vision. I assumed that they were nurses attending to my needs. Some spoke to me as if I were still a person; others ignored me like I was a vegetable. One day, Sarah brought Stephen to see me. I think it was Stephen. He was talking. I had to re-evaluate the passage of time.
“Remember I told you that Daddy is very sick?”
“What’s wrong with him?”
“You know the story of the Sleeping Beauty, in your fairy tale book?”
“Well, Daddy is like the Sleeping Beauty. He hasn’t woken up for nearly two years. We need some magical intervention to break Daddy’s curse.”
The emotion of the situation would have broken my heart if I could have felt it.
“Will a handsome prince kiss him?”
The sound of his innocent question and the image it generated slammed me from melancholy to humour. I was just thinking about turning gay when the light was disrupted by multiple shadows and raised voices.
“He made a snorting noise!”
“I’m sure it was just his oxygen tube misbehaving.”
“No, call a doctor. Look, I tell you he must have heard us. He’s crying.”
“Oh my God, so he is. It’s a miracle!”
My light changed soon after that. Many lights came and went in rapid succession until I found myself in a subdued place. I assumed that they had taken me somewhere on a trolley and were doing tests. I heard an assortment of noises and something directly above me kept flashing with colours. Then I went through the process in reverse until my light was back. It was comforting in a way; it felt like I was home.
Sometime after the next dark period I was visited by my wife and a specialist. The man must have been sitting close to my head and he spoke slowly and clearly. “Stephen, I am Doctor French. I’m an expert in locked-in syndrome, which is what you have. We measured your brain responses to touch, smell, sound and vision. I know that you can hear me and can possibly make out shapes in your field of vision. Don’t give up hope. We will work with you now to try to find a mechanism of communication that works for you. I will see you on a regular basis. Right now, your wife wants to talk to you.”
Sarah, who had only said three words to me in two years, did not use the doctor’s measured tones. I was hit with so much information in such a short time that my capacity to absorb it was overwhelmed. I settled for picking up and dealing with the gist. She was feeling happy. She was feeling guilty. She was feeling stupid and sorry.
Sarah was sorry because she had sat next to me for long hours without saying a word. While she had hoped I was still in there somewhere, she hadn’t really believed it. She would have felt stupid talking to the empty shell of me. Now she felt stupid for not having spoken.
Sarah was feeling guilty because she tried to imagine what I must have gone through. Stephen’s birth had focussed our minds and we had prepared our wills. We had discussed terminal situations and promised that we would not allow the other to suffer. We would pull the plug. She was feeling happy because she hadn’t allowed the plug to be pulled. She couldn’t possibly imagine how I felt about it.
We have all heard stories about prisoners sentenced to life in solitary confinement or asylum seekers incarcerated in camps for years on end. Their health deteriorates and they self-harm, commit suicide, or go insane. At least they can taste food, watch TV, exercise, masturbate, feel something. I would have given anything just to feel pain again and for that light to be permanently switched off. In any painful situation, even the worst torture, there’s knowledge that one day it will be over and be just a memory. That thought alone can keep you going. Life without hope is worse than death.
They struggled for three years to find a means of communication. I couldn’t blink my eye, twitch my cheek, wiggle my toe or move any part of my unfeeling body. Ultimately, they inserted a probe into my brain and digitised me. I was supposed to think and generate a pulse that they would pick up on a monitor. I couldn’t make it work. Then one day the fluorescent tube in the light began to fail. It flickered and faltered, making my brain twitch with it. The nurse on duty screamed with delight as the monitor started to flicker in unison.
In the beginning was the letter A and then the rest of the alphabet. One twitch for A and twenty-six for Z. It wasn’t very efficient. The first sentence that I spelt out was 16, 12, 5, 1, 19, 5; 11, 9, 12, 12; 13, 5. They ignored my request and began to teach me Morse code. I became quite proficient in no time at all. And so I have dictated my story.
Unfortunately, there’s no happily ever after in this story. Nothing has really changed. I remain a prisoner inside my own dead body, a mind kept alive by machines. Stephen is seven now and sees me occasionally. I hate his visits. He tells me about the things going on in his life and I curse myself for not being able to experience them with him. Once he was being bullied and I was powerless to help. He has a new step-father who does all the things with him I should be doing. Sarah has a new love and I don’t hear those three little words anymore. She visits out of duty. She should have thrown the holy sock away. Now they wouldn’t pull the plug even if she agreed. There’s only one constant in my life. It mocks me and controls me. I’m a prisoner of the light. Please turn it out. Please kill me.