“You are dying. And there’s nothing we can do about it.” The doctor pronounced my death sentence that day in the cold, antiseptic room of the Garendan General Hospital. My parents had already known for days, and had been giving me looks of sadness and pity all week.
I had known something serious was up when I had injured myself in soccer practice, and they had done a routine blood test to make sure I had not gotten any infections. Instead, my white blood cell count was through the roof, and several weeks later and seemingly pints of blood given, I had been led, anxious and a cold sweat trickling down my back, into a hospital room with overly bright lights and a distracted doctor who spent ten minutes in silence, reading over his clipboard, over and over in a nervous attempt to drum up enough guts to tell me the inevitable truth.
I was dying.
His words fell like icicles down my spine. I felt like the floor was falling away into an abyss.
“I’m sorry son. I know there are doctors that try to sugar coat things. Tell their patients with this disease that they can still live full and happy lives. But” he pushed up his large coke bottle glasses back up to his discolored nose ” I’m not one of them. You have a grave illness. It is hereditary. It’s called Clarke’s Syndrome. Your body is basically building antibodies for itself. Your immune system is killing you. ”
Tears were filling my eyes. My parents came into the room. I looked at them with abject fear. They were crying as well.
“Is there - is there absolutely nothing you can do? There’s no hope?” I was grasping at any straw. Anything this heartless doctor could say. Why didn’t I get one of those compassionate doctors who would lie to you - build up a false hope for a cure? Anything!
He looked at me with those over large glasses. His eyes looked like something from a twisted comic book. Oversized and heavy lidded.
“As I’ve said to your parents. There is research going on to find a cure for your illness. But the going is slow - as I’ve read the findings. Clarke’s Syndrome is exceedingly rare, and there is not much attention from the pharmaceutical companies for rare illnesses like yours. I’m sorry. The best I can do is enter your name in a database for people with your illness. If something comes up, I can reach out to you.”
Don’t call us, we’ll call you. He was already closing the door to my crypt. I felt like puking, right there in his hospital room. Do something... anything!
“Aegis, we will find out more about this illness. We will do everything we can.” That was my dad. Always with him there was an answer. Solutions for him were easy to come by, as he always had the money to find the best experts. Well, dad. Here’s a challenge even you might find too onerous to solve.
“We love you, Aegis.” My mom said, sobbing. The way she said it, it sounded like I was already dead. I stared at the floor, dumbly.
“How much longer do I have to live, doctor?”
“Your illness is progressing more slowly than most cases. That is why you’ve been able to live a more or less normal life till 17. It’s hard to say. However, no one with your illness has lived beyond 20. There is something about when your body goes through the teenage years that accelerates the body’s immune system malfunction. You have at most 3 years. Maybe less.” With that, the doctor nodded to my mom and dad, and walked out of the room.
My dad came around slowly and placed his hand on my shoulder.
“We’ll find a cure, son. I’ve already made a number of calls. Don’t you worry. ”
He didn’t sound like someone with hope. He sounded like someone with a dying son, who somehow, madly, had failed him. Somehow this was MY fault? Oh no dad. This was YOUR genetics. You, and mom’s.
The days and weeks passed. Somehow, everyone in my school had learned about my Illness. There was even a story about me in the news one night. “Billionaire corporate CEO’s son has rare genetic illness. Money is no object in finding a cure”
A great depression came over me. Obviously! Food lost it’s flavor. Friends began to find other places to be. My girlfriend Mina - at first defiant and steadfast in her faith that I would be cured - suddenly didn’t answer my calls and texts. And during school, she would always avoid me.
I was becoming invisible. A ghost before my time.
After a month, I dropped out of school. What was the point? I was no longer allowed to play soccer, one of the few highlights of my teenage years. The thrill of the competition - pushing yourself to the limit while seeing your team work together to defeat the opposing team. Fighting against impossible odds to pull out a victory at the last moment. That was being truly alive.
My coach had pulled me into his mostly unused office, three days after I was back at school and gave me the news. “The doctors say exertion might accelerate your illness. You’ve been banned from any school related sports. I’m very sorry son. You’re a great player. I’m going to hate to see you go.”
Of course he was. I was the star player. All coach wanted was a winning team. And I was no longer an asset, but a liability.
As the months passed, my father would enlist more and more doctors to poke and prod me. Each time they would meet me with grand promises of a cure, and that I’d be “right as rain” in no time.
Each one would fail. No blood test. No therapy. No miracle drug would even make the tiniest of difference. They would not even say goodbye. One day a new doctor would arrive to my father’s house, and we would “not speak” of the previous failures.
My mother and father grew more angry at one another. They would fight long into the night. Sometimes it was about me. Other times about all the money my father was spending on quacks and fake gurus. Apparently, there were some things money couldn’t fix.
I began to lose interest in going outside any longer. I lost myself in video games. At least there I could be alive. I could be powerful. And nobody would take pity on me.
One day I got a bruise on my arm. I didn’t remember hitting it on anything. It didn’t go away after a few days.
A trip to the doctor was the immediate consequence.
“I’m sorry son. ” This new doctor was a kindly old man with a long white beard. He looked vaguely like a wizard out of one of my video games. I immediately hated him.
“This looks like you’ve reached a new stage in your illness. Your body is attacking itself more and more. You’re going to have to stay here, in the hospital, so we can monitor you.”
I didn’t even shed a tear. My soul had been crushed so many times now, the pieces were still lying in a dark corner under my bed. There was nothing this man could tell me that would make me “feel” anything.
I checked in the next day. At least the place was not all bright white lights and bleach smelling floors. My father had splurged on a nice hospital room with warm colors, a carpeted floor, and a special chef that would fix me anything I liked. Every day I would ask for some impossible dish, like spaghetti jello, or chocolate flavored pizza. Every day I would somehow get my wish.
I knew, the end was coming soon. I was tired all the time. I could see odd sparkles in my eyes when I looked a blank wall. I read. Ate. Played games. I was already dead inside.
Then one day Doctor Whismer knocked on my hospital room door.
“Hello, are you Aegis Goleman?” He was a tall man with a black goatee and an impeccably clean hospital uniform.
“Yes.” I said, not even looking up from my game. I was approaching level 100, and I wanted to see if I would be able to finally claim a castle for my own, in Dungeons and Dwellings.
“My name is Doctor Whismer. I found your name on the Clarke’s Syndrome database. I’ve spoken with your parents briefly, and I wanted to meet you in person. You see, I think we have a way to help you...”
My character died.
I looked up from the game. “How could you possibly help me? I’m already dead.”
Doctor Whismer smiled. He had great teeth. He looked like a mad professor, about to send his students on a crazy adventure across the ocean.
“We are conducting a new experiment with people such as yourself. Ones with Clarke’s Syndrome. We think we can dramatically extend your lifespan. Are you interested?”
I shrugged. Hope was a paper doll in the middle of a rainstorm. The drops would fall, and the paper would tear.
“Sure doc. ” I said absently. “Sign me up.”