I was born with multibacillary leprosy.
Four hundred eleven thousand and thirteen people in the world have some form of leprosy, last they counted.
Of those four hundred and eleven thousand and thirteen, I am the only one born with it. Leprosy is not supposed to be hereditary.
I am completely, and utterly alone.
There are three forms of leprosy. Paucibacillary. Borderline. Multibacillary. Best one for last.
Paucibacillary? White patches on your skin.
Borderline? Skin lesions and weakness.
Multibacillary? Utter hell. At least, that’s what they tell me.
That’s my curse.
No-one knows how the mycobacterium leprae got into me as a fetus. Doctors are stumped. They can’t even say how leprosy is spread yet.
Mycobacterium leprae. Also known as Mycobacterium lepromatosis. Most commonly known as Leprosy. Also sometimes referred to as Hansen’s disease. They belong to the same genus as tuberculosis. Same order as diphtheria. Same group as Gardnerella vaginalis. Last one makes your genitals smell bad.
Earliest known case of leprosy was in India. Four thousand years later, Jesus was born. A thousand years from now, if Jesus ever decides to come back, leprosy will still exist in the rioters.
The doctors, with their fancy M.D.s, they say it’s like nothing they’ve ever seen before. Perhaps even a new kind of super disease. Gerhard’s disease now, instead of Hansen’s.
Gerhard is my doctor. If I had to hazard a guess at what disdain is, it’d be how I feel towards him. He asks questions he knows the answers to.
“Does it hurt when I press hard?”
No.
“Have you noticed anything new?”
If I were capable of hate, how I would hate Gerhard.
“Is there any discomfort when you breathe?”
The answer is No.
Always No. I don’t feel anything. Ever. That’s my curse. Or my blessing, perhaps. That’s what they tell me. People with less advanced stages of leprosy lose feeling in their hands, their feet. They say it feels numb. I wouldn’t know. If this is numbness, I’ve felt it my entire life.
If this is pain, I’ve felt it my entire life.
Mycobacterium leprae attacks the nervous systems in the body. Mine are beyond repair. Think paper, after being shredded.
Jesus only had to stretch his hand out to cure a leper. My doctors treat me with PB adult blister pack multi-drug therapy.
Dapsone and rifampicin. Hasn’t worked for the past twenty years of my life. So they switch it to rifampicin and dapsone. Laugh gently when I ask them what the difference is. “Multi-drug therapy has never failed in curing leprosy.” Sure. Also, no-one was ever born with leprosy.
There are two kinds of looks people give me. Sympathetic. Disgusted. Usually an exotic blend of both.
My entire body is covered in large multicolored bumps. Back when I was seeing a psychiatrist, he would ask me how I felt. Knowing that I was different. Knowing that even though my disease wasn’t contagious, people would still avoid me.
I don’t know anything. Nor do I care.
The other people are just shadows, and I am the only one real.
They tell me it’s fine to feel embarrassment. I don’t feel anything. If this is embarrassment, I’ve felt it my entire life.
Back in the Middle Ages, lepers were quarantined. The Order of Saint Lazarus was a military order of monks that would oversee a leper’s life. Today, they give food to the hungry in Russia. Back then, lepers were forced to wear bells, so people could hear them coming and run.
Today, no-one runs. It’s considered bad taste. A social faux pas. Instead, they stare at me out of their peripherals, out of the corner of their eyes, while shuffling away slowly; then glance away blushing when I stare back. I always stare back.
I’m completely alone.
Oh well.
It’s odd, but I am completely apathetic towards my condition.
My ex-psychiatrist says without a physical connection with the world, I can’t have an emotional one either. Which suits me fine.
My ex-psychiatrist speculated that my lack of detail and depth was because I simply didn’t notice it. Where normal people might see individual grains of sand, I see a beach.
Today, the nurse calls to say they have good news, and could I come a little earlier please? I’m guessing they’ve made a breakthrough of some sort. Something that can help me.
It’s almost time to go to the hospital. If it were up to me, I’d stay in my apartment all the time. I want nothing to do with the world, and I want the world to have nothing to do with me.
But there are bills to pay for my empty apartment. They compensate me well for the experimentation and medical journal articles.
I’m actually quite famous although they never publish my full name. I couldn’t care less, but the doctors all say they wouldn’t feel right morally. Knowing how I am. The condition I’m in.
Whatever helps you sleep at night.
I leave with the door unlocked. There is nothing of value to steal.
***
It is a bright and sunny day. It looks like it’s warm; the people staring at me have ice-cream.
I don’t feel the heat, but my body does react to it. Already, I can see the cloth getting soaked. I shrug the heavy jacket off, and see the hands of the people around me fly to their mouths as my arms come into public view.
I am disgusting. Probably unhygienic. Definitely contagious.
I look at them before continuing on my way. It is a bright and sunny day, and I feel nothing.
I arrive late on purpose. My doctor, Gerhard is waiting for me at the reception. He is talking to me before I’m through the doors.
I don’t listen. I follow him through the hospital, the only place where nobody looks twice at me. There are far more horrible cases.
There are thirty-three point two million people with the acquired immune deficiency syndrome. Most commonly known as AIDS. Sometimes referred to as HIV. There are ten million, seven hundred and one thousand people with malignant neoplasm. Or cancer.
Of the six point eight billion people on the planet, there is only one of me. Only one born with leprosy.
Consider: one million seven hundred and ninety three thousand times more people died of diarrhea in a year than there is of me.
Makes you wonder. Am I really nearly two million times more important than those people?
Makes me wonder. How long until they finally give up? Like the Order of Saint Lazarus? How long until my doctors go off to help hungry people in Russia too?
By now, Dr. Gerhard has prepared all his medication. There is a simple needle filled with a clear liquid.
He tells me, “This is going to sting a little…” before realizing his mistake and chuckling.
Funny.
As he swabs the point of entry with alcohol, he begins to explain the process. I blank out.
After a while, he leans back, looking thoroughly pleased with himself.
“Don’t you understand? You can be normal.”
I understand perfectly. I wish I was at home, alone.
***
A week later, there is still nothing.
Perhaps Dr. Gerhard was simply wishing for a placebo effect? My ex-psychiatrist once remarked that my apathy could be why I didn’t feel anything; why bother to go to the trouble to have sensitivity?
Placebo. Latin for “I will please”. Convicts were told they would receive a small cut on their neck, and that all the blood would be drained out. Instead of actually doing it, the authorities made a small pinprick of a wound, and poured water on it to stimulate blood loss. They died.
The placebo effect. Powerful enough to convince the brain it’s dead. Powerful enough to convince my body it cares?
It’s only when I’m walking out after my seventh injection, when I’m rubbing my arm as it feels sore, that I notice. It feels sore.
I feel sore. A kind of… sharp numbness?
I run back into the hospital. My doctors are ecstatic.
They seem unconcerned when I tell them I don’t feel anything emotionally yet. They say it’ll come eventually.
After an hour or so of testing, they send me home. Tell me to get some rest. Come back tomorrow.
As I’m leaving, I notice, for the first time, the physical complexity of the world.
How the heavy linen of my jacket feels against my bare flesh. It’s what I imagine the beach would feel like. I can sense every single fiber of the rough fabric surging past my skin like tiny grains of sand.
How the cool wind feels, flowing through me. The delicious sensation of temperature. How I appear lighter, almost light enough to simply float away.
For the first time in my life, I feel—for the first time in my life, I’m free.
I run the rest of the way home. Relishing the build-up of lactic acid. How soreness feels refreshing.
How every step I take sends a shock of new feeling up my leg.
I can’t stop moving, feeling the beautiful texture of the world around me. The air seems solid, tangible. I need only move to feel it glide and mould around me.
My chains of lethargy have disappeared, and I feel liberated.
I can’t wait to take a shower.
***
I didn’t sleep at all last night.
I go through all my clothes. Trying them, comparing them, selecting the one that’s the most comfortable. Is this what other people experience their entire lives? A never-ending whirlwind of consciousness?
If this is feeling, I’ve been missing out on it my entire life.
If this is freedom, I’ve been imprisoned my entire life.
I leave the house earlier than I normally would for an appointment. I want to take my time getting to the hospital, and savor the new experiences.
I smile as I walk down the street. Something new again.
Dr. Gerhard would be proud of me.
As I take delight in the beautiful juxtaposition of sunlight and shade, I notice people staring at me.
Covertly. Secretly. Quietly.
I stop in the sunlight. Eyes squinting to make sure. They’re all really looking at me.
I walk faster, trying to outrun the world.
Their eyes chase after me, cutting through the warm morning air. Instead of the magnificent tingle of heat on my skin, there is only the cold void of nothing.
I notice my legs are shaking. And I can’t stop them.
The people. Their eyes. Looking at me.
Their body language. Arms folded. Lips curled in contempt. Cheeks bunched in disgust. Eyes flickering from the ground, then to my face, then back to the ground; I draw them like flies to honey.
The entire world draws closer, crowding me. The heavy smother of their focused attention is unbearable. My movements have become mechanical; my limbs feel bound in heavy chains.
When a mother ushers her child away, it all comes crashing down.
A feeling of alienation. Numbness, but deeper, were that possible.
Like leprosy, but worse.
If this is alienation, I’ve never felt it in my entire life.
If this is freedom, I’ve never wanted to be imprisoned more.
It’s the feeling of being alone, and knowing it, and caring, and wishing it were not so. Of being truly one.
I used to be the one in four hundred and eleven thousand and thirteen. Now I’m just one in six point eight billion.
Completely alone.
And I wish I had my leprosy back again.
—
This story won the most creative award for RTHK-SCMP’s 2009 Short Story Competition.