An inner struggle of beauty
The Epitome of Perfection
Sean Jacobs Pooland, a young boy of thirteen runs his hands along his mother’s face feeling the shapes of each of her features with his fingers. “Mamma? What do I look like” he asks.
She looks into her sons eyes and answers the same way she always does. “You are the epitome of perfection my dear”.
At school Sean walks down the hall gliding his cane across the floor. He hears chatter as he passes a small group of kids. He hears them laughing at him but he can’t make out what they are saying exactly. One of the girls says something about saint mikes.
“Hey freak” one of the boys calls out.
Sean keeps walking, maybe they are not talking to him. “I am talking to you freak” the boy comes up behind Sean and shoves him.
Sean loses his footing and falls down. His backpack slides across the floor and the kids laugh as he scrambles to find it.
At home as he walks into the kitchen, he can hear his mother talking to some one. “I will have to tell him eventually. I can’t keep it from him forever”.
“Mom? Who are you talking to”. Sean tosses his backpack and cane next to the doorway, walks to the couch and sits down.
“No one honey” she says to Sean. “I will talk to you later” she says to the phone.
“Mamma, am I a freak”
“Of course not”
“Than why do kids at school call me a freak” Sean raises his voice “Why do kids shove me and call me a freak”.
“Who did this, who called you a freak” concern makes her voice tremble.
Sean walks into his room. “I don’t know mom, I didn’t get a good look” he slams the door behind him.
“Sean I am sorry” she presses her forehead against the door.
“leave me alone” loud music fills his room.
Later his mom sets the table for two, his usual spot and her spot across from it. The music quiets
“Whats for supper” Sean says as he finds his seat.
“Your favorite, Spaghetti” she lands a big helping onto his plate.
Sean can hear the squish of the sauce and noodles on the plate and smells the sauce. He breathes in deep as the steam brushes warmth against his cheeks.
“Sounds delicious” Sean finds his fork and digs in.
This dinner is quieter than most. Clinging of forks against plates and slurping is all that can be heard at first
“I am sor—“
“I want to talk to dad” Sean blurts out.
“OK I can get him on the phone after supper” she says.
“No I want to talk to him in person”
“Okay tomorrow after school we will go over”
“No after supper, I need to talk to him now” he finishes his plate and readies himself.
After a quiet ride and a nervous walk up the stoop Sean’s dad greets him at the door.
“Sean what are you doing here” he asks leading him inside.
“Dad, what do I look like” Sean's look-less gaze turns in his dad’s direction.
He takes his son’s face into his hands and answers the same way he always does. “you are the epitome of perfection my son”.
“Then why are kids calling me a freak and pushing me down and laughing at me” unhappy with his dads answer Sean heads for the door.
“Wait! don’t leave” his dad rushes between him and the door. “I was afraid this day would come but I didn’t think it would come so abruptly.” he opens the door. “let's go for a ride”
Sean and his father drive for what seems like hours. Not a single word is uttered by either of them. Eventually they reach a the parking garage of a large hospital.
“Where are we” Sean steps out of the vehicle and feels the concrete beneath his feet.
“We are at Saint Michael's hospital, this is where your mom and I brought you when you were a baby” he closes the doors behind them and they start walking.
”What kind of hospital” Sean inhales deeply, he can taste the salt air and hear the sound of waves crashing.
“They specialize in rare skin conditions”
“Rare skin conditions?”—his voice cracks in horror—“whats wrong with me” he asks
“Your mother and I were just trying to protect you” Sean's father shortens his gaze to his feet
“I am the butt of everyone's jokes and I don’t even know why”
”You are already blind we didn’t think it would help you if you knew.”
“You can talk to the doctor he can answer all your questions a lot better than I can.”
They walk into the hospital, up to the receptionists desk and quickly ask for Doctor Pooland.
All gazes turn to Sean and an overwhelming sense of shame comes over his dad as they wait for the doctor.
“I never thought I would see you again” —a firm handshake turns into a hug of reunion— “and this must be Sean” He continues, looking toward the boy “The epitome of perfection” he gestures for them to walk with him.
“I have questions” Sean says
“And I have answers for you”
in his office they have a long conversation about the doctor being Sean's uncle, and the original diagnoses, a rare disease that has been plaguing Sean his whole life and how that diagnoses resulted in a fight.
“Albinism is a condition where a person has very little or no color in their hair, skin and eyes. In your case a very extreme manifestation, your skin is translucent and you can see the blood vessels and veins in your face and extremities.” The doctor says matter-of-factly
“So this is why people laugh at me” Sean asks the doctor. “This is what you have been keeping from me my whole life” He finishes as he turns to his father.
“We didn’t think it would end up like this” his father says.
“What, you didn’t think any one would notice at school”
“You weren’t supposed to go there, we wanted to homeschool you, but you insisted” His father quiets himself when he notices he was raising his voice.
The doctor interrupted and said that the condition is also what effected his eyes it made him go blind when he was really young.
“Sean, I can’t fix your skin but I have had success with reversing blindness caused by albinism” the doctor says.
Sean's father’s look turns to shock “why haven’t you told us sooner James” he says almost in tears.
“You disowned me twelve years ago, Daniel. I had no way of telling you.” James looks to the boy. “Is this something you want to do? Do you want to see if I can restore your eyesight”
“of course I do, I have thought of this for a long time.” Sean says.
“well get your mother here and we can work out the details.”—the doctor quickly started working out details in his head—“Ever since you were diagnosed I have spent what ever free time and funds I had on this research” he finished.
When Sean's mother shows up they talk about everything James explains that Sean will undergo intensive cell therapy that will leave him comatose while his body changes unassigned cells into working ocular cells and replaces all the damaged cells in his eyes. Reluctant and nervous about their son being in a coma the parents agree to the procedure.
“We are not going to be able to change his mind any way” they say to each other.
Sean is hooked up to some machines through tubes and IVs. Through his happy anxiety he doesn’t even notice the needles. He just remains focused on the different sounds of the machines and the waves outside and drifts off in to a deep sleep. Throughout the long three week process there is always at least one parent at his bedside, holding his hand and hoping he is okay and waiting patiently for him to wake up. Every one wants to know what he will think of them with his new eyes.
On a rare day when both mom and dad are in the room Sean opens his eyes.
“How do you feel son” His father asked
“Tired” —Sean licks his lips— “and thirsty”
“What do you see” James asked
“Nothing” Sean looks around and blinks his eyes for a few moments. “I see nothing”
“It may take several hours for you eyes to adjust”
The sound of the machines, the clock, the waves are no longer comforting, in fact they are just the opposite; each tick and each tock drive home the feeling of dread like a hammer hitting a nail. The first day goes by. A blind boy and his parents share talk-less meals and then its time to sleep.
The next day, Sean wakes up early to the shapes of fluorescent lights on the ceiling and the IV bag next to the bed. His senses overwhelmed his eyes hurt from the lights but its a good hurt.
“Mom, are you there” Sean asked. His mom came quickly from the other side of the room.
“Me too” his dad said
he feels the warmth of their hands on his. He reaches out and his mom puts his hand on her face, and he slowly feels the contours of her face.
“I knew you were beautiful mom” he smiles and closes his eyes.
“You can see me” she asks.
The doctor walks in and the excitement is hardly containable Sean enjoys looking around and seeing things for the first time. Every few minutes Sean closes his eyes for a while because of the pain but it is slowly getting better.
That night Sean lies awake. Scared, he calls for the nurse.
“Can I get a mirror please” he asks.
The nurse finds him a small hand mirror and gives it to him. In quiet contemplation he holds the mirror against his chest. He slowly raises the mirror up to his face and in the dim bedside light he peers into his own soul. His gaze lowers from his white hair, down to his pale brow, he sees the lack of color in his new eyes. He can see his blood flowing under his skin down to his neck. His eyes begin welling up, and he quietly finds the words to say to himself.
“There it is. The epitome of perfection.”