Familial Dysautonomia
I’ve been told I look deranged. That hurts. I understand though, half of my upper lip is gone. The fucker got torn off one night as I was hopping a barbwire fence when I was a kid. Didn’t even realize I left my lip dangling on the razor wire until I hopped into my friend’s car. I was bleeding everywhere, a stupid prank gone wrong. That was a fun night though, despite my future deformity.
I’d do it again, no doubt.
I already know what he is thinking the second I stepped foot into his office. They all think the same. I’ve grown used to it over the years. I’m not exactly ‘attractive” to say the least. My face resembles more of a jigsaw puzzle from the scars and scrapes that decorate my flesh. I try and tell myself they build character.
When I walk into the room he immediately begins to stare. It used to bother me, now I feel a sense of manipulation over people like him. They stare, because the site of me causes them discomfort. Anything not of the norm frightens the majority of society. It’s no wonder why I do. Its one of those things you just learn to live with.
He sits comfortably behind his large desk on his leather recliner. His office is large and filled with many thick books, I doubt how any one man could have the time to read through them all. I settle on the notion they are there purely for aesthetic reasons. He is writing notes merely on my physical appearance. We haven’t even spoken a word yet.
Who the fuck is this guy anyway? I doubt my reasoning for seeing him now. Seems like a pompous fuck.
“My name is Anthony Klein. You are here because you suffer depression, or so I’m told. Is that correct?”
He speaks slow and methodic. I’m not sure if this is his usual speech pattern or if he is purposely slowing down his speech as a way to send off a subliminal message that my many scars do not bother him. I know doctors, I know body language, I know people usually better then they know themselves.
He shakes my hand and looks me directly in the eyes.
“Yes, I suppose that is correct.” I take a seat in a dark leather chair that squeaks noisily as I find my way into comfort.
I speak awkwardly, an impairment I have due to the stub of what is left of my tongue. I wasn’t born this way; it goes with my “special” talent. I wasn’t always like this; I used to have a normal tongue. By the time I was six though, I had bitten the majority of it off. It’s to the point now where I can no longer extend it far enough to bite down on it anymore. I have lived with imparity for the majority of my life, I can speak most words with no problem, but I always sound a little weird.
“Before we begin I must tell you I am no Doctor, I am in no way licensed or state approved. You were brought to me through a mutual friend who knows of my work. I don’t believe in prescription medication nor am I licensed to give you any, understood?”
“Yes.” I reply. I’ve already made my mind up, this guy’s an ass.
“I am a little shocked. I was told you have had a share of injuries and that you would have scars, but…”
I only vaguely listen to his words. He has pictures of his family on his desk. A beautiful wife with shoulder length auburn red hair and a young daughter, probably eight or ten, she looks more like his wife then himself. She has her mother’s nose, her smile. I only see her father in her eyes. The three of them actually smile, not one of those fake smiles you see in family portraits, theirs is real -caught in the moment of- not pitiful reenactment of. Its clichéd, but the photo is of them on a beach, probably up north somewhere. I see their smiles and I go numb. Something I have known far too well and for far too long.
“No worries,” I finally reply “I have looked like this the majority of my life. You see this large scar running down my forehead and through my eye? Grade school -fell off the monkey bars and split my face open- straight to the bone. One of my favorites.”
“That must have been quite a traumatizing experience.” He says with no emotion. He hardly looks at me, focusing on his bright yellow legal pad full notes.
“Especially when I stood up like nothing had happened, unknowing my left eye had been basically mutilated. I’m blind in it now.” I continued.
“I’m sorry to hear that. You say you were conscious after the fall?”
“I got right up and walked into the principal’s office. Told them I think I may have hurt myself. I left a trail of blood the whole way. I’m special. At least that’s what the told me when I was a kid. More of a curse I would say.”
I can’t help but to stare at the photo. I stare at it as long and hard as he stares at me. I see him reading me, noting where my eyes lay. I don’t want to stare, I know it’s rude. Despite how often I am on the receiving end of such rudeness, I try not to myself. Yet I keep going back to that photo. I can read his uneasiness with my infatuation with the photo. This tells me this photo is much more then it seems.
“I’m sure the adrenaline masked the pain quite a bit. Even still… judging from your scar it must have been quite serious.” He continued, ignoring my fascination.
“No, no adrenaline. Like I said I am special.”
“Well I must tell you; because I am not a doctor I have no charts or files on your history. I know nothing of your family or health, or you’re so called special-ness. I am a spiritual healer and I will cleanse your pain through my own method.”
“Pain? Well that won’t be hard fix.” I laugh under my breath, this goes unnoticed.
He knows nothing of me. I am not sure what our mutual friend has told him, obviously not much. He seems confident of curing me. I know he can’t, I know there is no cure.
“So why are you here exactly? Do you have a problem with the way people look at you with all your scars? Low self esteem? Did you loose a loved one to illness or death?” he asks questions, shooting them off like rounds from a six-shooter. He doesn’t leave room for answers, he doesn’t need them, he is making a statement… that is all.
“These are all things I can help with. I specialize in cleansing your mind, in making peace with these hardships that sicken so many people like yourself.”
He is much older now from the picture. His hair has thinned and the shades of gray have overcome the majority of his brown hair. His face has also thinned out. He looks tired in comparison. I would wager theirs almost a ten year difference between the two.
“No, none of those...” I answer. “Well, actually maybe all of those? I don’t know, that’s my problem.” The tension in my voice begins to change, this he does notes and I can see his posture alter. He sits up in his chair and places the yellow legal pad from his lap down onto his desk. He squares himself with me.
“You can call me whatever you like. So long as you our comfortable with me and our time together. I am here to help you, I want to reinforce that. May I ask what you do for a living?” he finishes with a smile.
“Well for the majority of the time I made my money as a traveling carnival act.” I do not return the smile.
“Excuse me?” His left eyebrow lifts slightly and his head cocks to the right faintly. I can tell I’ve sparked his interest.
“I said I made money traveling with a carnival, I was a sideshow.”
“What did you do?” he continues on with his never-ending notes.
“I was dubbed the “Human Punching Bag”.
“Human Punching Bag?” he looked confused.
“Do you mind?” I pulled a cigarette from my jacket pocket and a matchbook from my jeans.
“No, go right ahead.” He replied.
“Yea, you heard right.” I lit the match and took a long drag from my smoke. “People paid to kick my ass.” I inhale the smoke deep into my lungs. “Anything they wanted to do, obviously the more intense it got, the more I profited.” I exhale slowly allowing the smoke to escape my body.
“Why would you do such a thing? Do you not care about your body?”
“Care?” I asked with a smirk. I take another long hit from my cigarette and lay my arm out on his desk palm up. I knock the ashes off into the tray and slowly put the burning cigarette onto my skin. You can hear the flesh burn, I do not flinch. You can even smell the stench of burnt skin. The site is gruesome, I seen someone do this in a movie with a cigar, you can see similar scars on my arm where I have done it before.
“What are you doing?” his face squints in pain for me. I see that look more on people’s faces then actual smiles. Its apart of the curse.
“Punch me.”
“Excuse me?”
“Go ahead I’ll give you a free one. Right in the face, go for blood.”
“I can’t…” he looked appalled at even the thought of him to do so.
“It’s to prove a point. If you won’t then I guess I will my self.” With the same arm as the burnt scar I clench my fist as hard as possible; squarely I sock myself in the nose. I hear a crack and I see the flow of red pour onto his desk.
“My god!” he screams with wide eyes. From underneath his desk he pulls some napkins and hands them to me.
“How old is the photo?” I nod towards it spewing my blood everywhere as if it were no big deal. Honestly it wasn’t to me. I’ve seen my blood more times then most people have seen movies. It’s a daily occurrence; it goes with my job, with my life.
“Excuse me?” he’s rushing towards his bathroom. He comes back with a roll of towels and begins to clean up the pool of red.
“Sorry I didn’t mean to make a mess. How old?”
He seems visibly shaken. The blood now was spilling over onto his notepad, all his lengthy hand written notes were now mixed with the thick blood, the ink bleeding into it.
“Three years ago.” He muttered as he cleans up the mess in a panic. “Why do you care?”
“No offense, I would have guessed it was like ten years ago. You’ve aged.”
“Why did you do that?” he ignored the statement.
“Why not?” I answer.
“What do you mean why not?” he is baffled, it’s not his fault, he doesn’t understand anything. This act was not socially acceptable, but like I said I don’t exactly fit in with the norms of society. I am their burden, I am their whispers in their ears and their constant stares, I am the freak who moved in next door who’s not allowed to banter with their children.
“I guess what I mean is, Familial Dysautonomia.” “Excuse me?” He tosses a blood soaked paper towels into his small desk’s trashcan. He looks furious, but still his curiosity overcomes his anger. “Familial Dysautonomia.” I repeated, this time speaking louder and as clearly as my stubble of a tongue will let me.
“What are you talking about?”
“You ever hear of those Scandinavian triplets? The ones who wore born and all died before they were twelve due to that disease? They had this damned curse too, that wasn’t that long ago actually? What, back in the late eighties maybe, I think there was a special on sixty minutes about them?”
“I’m vaguely familiar with it. They had some strange defect. I can’t really recall much about it.”
“Yea, that defect it what I have. The average lifespan is twelve years young. Somehow I’ve managed to live past twenty.”
“You don’t feel pain at all then?”
“I stand in front of a line of people with blunt objects who want nothing more then to cause the most amount of pain to me they can. They already don’t like me because I look different. They pay top dollar to get a crack at kicking my ass. I’ve been hit with baseball bats, hockey sticks, led pipes, hell -some just want to punch me. I always get the biggest guys wanting to show off in front of their college girls, thinking they can be the one to hurt me. They don’t get it. They punch me, I bleed, I smile to them with blood stained teeth, and take their money. In short, I feel nothing.”
“That’s not healthy. There’s got to be serious long term effects caused by all this damage, blood clots, all that has to be taken into consideration.”
“It doesn’t matter. I’ve already doubled my lifespan. Anyway, have you ever gone through life with in inability to feel anything? It’s not much of a life. I should have been dead a decade ago.”
“It can’t be all bad.” he simply replies.
I look back at his photo with his family. They are happy. They are everything I have never known, everything I have ever wanted.
He notices me staring at his photo again, this time he lays it face down. He grows more uncomfortable, I can tell as he crosses his leg and angles himself differently as he sits back down into his chair. His eye contact becomes lesser; he is also fidgeting with a pen. All signs.
“I’m sorry I don’t mean to be rude. Its just you seem so happy.”
“We should focus on you. Not me.”
“Okay whatever.”
“I want to help you. I just… I’ve never helped anyone such as yourself. I don’t even know where to begin. What is it that you want, where do you hurt emotionally?”
“I would give anything to feel that way, the way you do in that photo, with that smile. That’s all I want. You know how it feels when you love a girl so much that just the mere touch of her skin makes you so happy you could die that very moment and be happy? Not me, no fucking clue. I can’t feel anything; I have no idea what it feels like to feel the women you love in your arms.”
“You should feel blessed. You’ll never know the feeling of loosing that touch forever either. ”
“What do you mean?”
“I’ve known that feeling, the completeness that comes with the warmth from your loved ones touch. It’s enough to make you withstand all the evils in this world. But once you’ve felt that, you have the uneasiness to know that it can be lost very easily. You may never know the warmth for the short amount of time that feeling lasts, but feel lucky you’ll never know the bitter cold that replaces it once you’ve lost it. Trust me, that last much longer.”
Although he doesn’t say how, whether they were killed, or whether she met some younger richer man and left, but it is obvious, he no longer has that warmth either. I don’t ask either, in all honesty I don’t care. I hate him for ever feeling that.
“I would take the bitter cold over pure numbness. I would take anything over nothing. You give me one day to feel that way, and I will take an eternity of that bitterness.”
He shakes his head as if he is ashamed of what I’ve said.
“You only say that because you’ve never known it. Trust me, you have no curse, you are blessed. You are spared from the pain the rest of us have to deal with. You are spared from the turmoil and despair my other entire clients struggle with when they walk through those doors. If all people were like you I wouldn’t have a job. People fall out of love, people cheat on their spouses. If no one felt anything physical then their emotional attachments wouldn’t be hardly as strained. ”
“That’s bullshit, I’ve spent my whole life as an outsider, both physically and emotionally. I feel pain, I feel hurt, when someone looks at me with disgust, I still feel that. When that one person looked at me with love, and when she went to hold me and I could not even feel her, that is a curse. I want to feel that! I feel all the bad, all the evil, all the negativity, but I get nothing else. Nothing.”
“I can’t help you, I’m sorry. None of my techniques will enable you to feel anything, physically or emotionally.”
“Fine.”
I walk away. I slam the door behind me. I can’t help but to think about that photo. I wonder how a man filled with so much pain can comfort others anyway. I wonder about what he said. I wonder how the pain would feel over loosing that feeling. I wonder what kind of man he was when he had it. I wonder what kind of man I would be if I ever had it.
I wonder a lot, but I’ll never know.
