Juliana and god

On Sunday evening I was watching TV Guide Channel. Looking for something interesting I came across the title "Born Without a Face" on The Learning Channel.
"Wow," I said. "That certainly sounds interesting."
I had no idea what this program would do to me.
The picture you see is of little Juliana Wetmore. She was born with a rare disease called Treacher Collins. This rare genetic disorder (she has had countless surgeries to correct her deformities and will have many more well into adulthood) is characterized by various malformations of specialized structures in the head and neck, including notched eyelid fissures, hypoplasia of the mandible, enlarged mouth with high or cleft palate and incorrectly positioned teeth, and atypical hair growth. (Note that this syndrome does not affect the brain. Aside from her face, she is a normal little girl.) Doctors seem to agree that Juliana's case is the most extreme in recorded history.
Within the first 5 minutes of the program I knew I had to call mom and tell her to watch.
"Geez, it makes you wonder why god would let that happen," she said.
Not wanting to get into a religious debate, I replied, "Yeah, I know."
But her comment made me think.
I am an atheist so I don't believe in god but for those that do I have a question. How could god justify bringing such a deformed looking child into this world? Isn't god smart enough to know that it isn't what's on the inside that matters, but what's on the outside?
There should be 0% bullshit on this topic.
Ugly waitresses are never tipped as well as the pretty ones.
Little kids point, stare, laugh at "funny" looking people.
People with deformities attract stares, unwanted attention. The ridicule hurts. I speak from personal experience.
I hate the fact that I'm interested in this girl's life. I hate my internal reaction when I see her face. I hate the pity that drips from my bleeding heart because...
In a perfect world, this little girl would attract no more attention than a normal looking child. In a perfect world, the things inside of us would mean more than the things that compose our exterior. In a perfect world, we would all be children (forever) with the world for our playground. In a perfect world, love would always be at hand. In a perfect world...
I feel for this little girl. I feel for her parents. Who wouldn't? How can she ever have a "normal" social life? The ethical questions are numerous (and unfortunately, way too important).

.....In a story like this it's easy to forget that at the center of it all is a little girl. A girl oblivious to society's bitter, rusty blade. A girl oblivious to the "truths" we adults have built for ourselves.
A girl.
Just a little girl.

mc

Links:
The family's update page
Local news story
Treacher Collins Syndrome info page

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Don't judge a blog by its title. Entertaining stuff.

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mc

latest from the void

Grandmother had surgery today. Her surgeon said that the cancer didn't metastasize so hopefully everything will be okay. Only time will tell.
Sister had 2 court appearances for 2 separate charges and avoided jail time. I guess this is good news. I called her Saturday to wish her happy birthday. Talking to her was a little awkward because so much time had passed since we last spoke. She sounded good. I didn't ask about her recent problems. I didn't see the point. I never know if what I'm hearing is true. The truths...the lies...in her mind, there is no wall that separates the two. It all blurs together. It's all a mess...a tangled mess that no one could ever untangle.

mc

more from the void

Last night I received an IM from mom.
"Can I call you?"
The wording and the tone of her message told me something was up. As I dialed her number a variety of scenarios ran through my mind. All of the scenarios featured sister, of course.
Mom didn't waste time.
"Grandmother has breast cancer," she says.
Apparently the small lump found in her mammogram came back as malignant. I've never been close to my grandparents so the news wasn't as crushing as it might be for others.
I can't explain this distant relationship. We've never been close.
Through all of the things that have happened over the past couple of years I have always worried about mom and dad, especially mom. Her daughter is a lost person (sister has a court date tomorrow and faces the real possibility of jail-time, which would be a relief, in my opinion) and now her mother has breast cancer. She tells me she is handling everything relatively well yet wakes up in the middle of the night biting her bottom lip, teeth clenched. When I think of mom's pain an image comes to my mind. The image is not of my mother but of a person struggling to cope with painful truths. This image is not of my mother but of a person, alone. She tells me that stepdad has been providing wonderful support, but ultimately, she must deal with these things by herself.
In a recent conversation with JKiss we discussed our parents and grandparents. I told him of how strange it is to see your mom and dad not as parents, but as individuals...as human beings. They stare into the same mirror but see a different reflection. What do they see? What do you see?

mc

"Fuck the system, man."

Save your breath, kid. Yeah, I know. You're trying to push. You're trying to stand. You're trying to rise. You're trying to revolt against "the system" by dying your hair blue and piercing your cock with a spike.
You're trying too hard.
Your mantra is, "Fuck the world. That shit revolves around me, man. So fuck off."
Yeah yeah, I know.
I used to be there, too. But now I'm 27 years old and at 27 you begin to realize some things. All that shit you believed in and all the points you were trying to make (with your songs, your "art," whatever) were bogus. That belief system is a byproduct of growing up. Unconsciously you're denying the facts. There is no grand scheme to oppress you and your thoughts. The very CEOs that you detest are just as lost as you; they simply make more money than you do. There is no order. There is no system.
There is a reason why Kurt Cobain killed himself at 27. It's no accident that Jimi, Janis, the Lizard King and the other members of the "27 Club" died at this age. Some people have a strong allergic reaction to bullshit. Others know that bullshit isn't bullshit - it just is.

Bullshit is being dumped by your girlfriend on Xmas Eve.
Bullshit is a flat tire.
Bullshit is being fired.
Bullshit is losing your keys.
Bullshit is a nice, sunny afternoon.
Bullshit is red.
Bullshit is a tree.
Bullshit is air.
Bullshit is.

mc

always fleeting

think about who you were 5, 10, 15 years ago...try to picture yourself in a familiar place from that time period...does it seem real? was it real?


On Wednesday I was driving past South High School when I heard the sound. The South marching band was practicing. I recalled doing the same thing 10 years ago. Has it been 10 years? Ten years since I was a full of shit teenager fumbling with my books at my locker, thinking I knew it all. Wow, 10 years. When I think about who and what I was it doesn't seem real. Did I really occupy space and time a decade ago? That person isn't real to me. I cannot visualize myself outside of myself, especially this "person" 10 years ago. Who was I? What did I stand for, if anything?
I've never been one to collect photographs. In fact I don't believe I have one single picture of my family. Anyway, what is captured in a photograph? My yearbook picture from 1995 tells me nothing. It does not tell me who I was then or what I was. It's simply an image, but I digress.
I'm fascinated with the idea of my past existence. The teenager from 10 years ago is a stranger to me, if he was indeed real. Why? Because I cannot prove my past existence. I could take a Polaroid photograph and say, "Look. This is me at 12:23 am on Monday, September 26, 2005." No. I could etch my name, date and time in fresh concrete to prove my existence. No. These actions prove nothing. The Polaroid picture? An image. My name in concrete? Another image. Have you seen the images George Lucas has created? An image is not a contract with reality. An image is a dream. An image is the color of water. An image is air.
So how do I prove I exist? I can't prove it to you. Hell, I can't prove it to myself because we are unable to capture the present and make it tangible. The present is always fleeting. The speed of life is too fast to capture. Maybe that cheesy love song is right...All we have is now......

mc

We kill others in an attempt to shape the future and kill ourselves to try to change the past.