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12:34 PM on 10.02.2009 // Andrew Kauz
Nothing is sacred: We wonít let you go alone, but we have made a tragic decision



This is based somewhat on the album Mercy Falls by Seventh Wonder

His birth was so many years ago that few among us remember it. It was one of little fanfare; many others were born around the same time and often received more attention than our little child. Still, we loved him from the moment he was born.

We named him John Randall Puglisi-Gore, my husband, surprisingly, being the one to push for a hyphenated last name. He liked the initials it created, he would later tell me. JRPG. They flowed, almost as if they meant something. I never admitted it to my husband, but I liked them too.

John grew up fast and was very popular with his elementary school friends. Groups formed on the playground, and while John was in one of the smaller, less-popular groups, those closest to him loved him. They all wanted to be like him, dressing like him, acting like him, and even refusing to speak, just as he did.

Throughout the years, John went through many changes, and like any parent, we loved some of them and resisted others. Perhaps we were too hard on him at times, but after all that has happened, itís easy to blame myself. Still, his friends, his teachers, and everyone around him often criticized himóhis intellectual development wasnít fast enough, he wasnít trying to grow up like his peers. Iím sure this took a toll on him emotionally and, in some ways, perhaps even physically.

None of that matters now as I sit beside Johnís hospital bed, staring at his comatose body and facing the very real consequences of the decision that Iím about to make. A son should never die before his mother. A mother should never have to kill her son.




Throughout Johnís life, he struggled with peopleís expectations of him. He first impressed teachers with his dragon warrior drawings, which teachers found to be the first thing to really define Johnís intellectual style. A year later, he became prone to fanaticizing, which many praised him for and others suggested wasnít a constructive use of time, as he did this over and over again despite always saying that "This one will be the last." But it canít be argued that his early fantasies werenít creative, giving his school teachers a glimpse into an imagination that they had never experienced before. They also made him more popular with the other kids outside of his small group of friends.

Pretty soon, however, Johnís health started to fail. It was extremely slow at first, and no one knew what was wrong. But certain things became apparent to everyone around him. He was no longer creative, many of his teachers argued. Something was fundamentally wrong with his mind.

We noticed other changes too, or, rather, the lack of changes. So much about his appearance and personality wasnít developing. Those same things that were considered sacred parts of who he was were now his greatest weaknesses.

His creative mind slowed. He drew the same pictures over and over again with only minor changes, keeping so many fundamental flaws in place while his peers overcame them with grace. He created fantasies using the same basic story, character types, and mechanics. He had finally begun to speak, but his speech was poorly delivered and not well-constructed. His speech either made no sense or was horribly difficult to listen to. He lost many friends this way, and even we, his parents, began to chide him for these things. Perhaps we were too hard on him, or perhaps we werenít hard enough. Regardless, we didnít know what to do, and we didnít see any improvement.

His health further deteriorated after he was diagnosed with a condition known as Stagnancy, which affects the mind and the body alike. It was a devastating diagnosis Ė one that often leads to death within a few short years. He kept many of his creations to himself, not allowing his peers to see them. You could see in his eyes that he was suffering, knowing that he was afflicted by Stagnancy but feeling powerless against it.

Still, the poor boy tried. He tried to become more active in classes rather than simply waiting his turn. Some loved him for this, suggesting that he had finally found a way to reignite his creativity. Others suggested that this new personality trait simply wasnít who John was. His mind became even more conflicted, and his struggles with Stagnancy only increased. Iíll never forget the day that he asked me, ďDo people even want me to beat this disease?Ē I had no answer.

As more and more time went by, Johnís body began to develop alongside his peers, but inside, he experienced only minor improvements. Many of his greatest developments were rejected by his peers, perhaps because they were too weird, or too characteristically ďJohn.Ē So many of his friends had given up on John and begun to hang out with Wes, a new kid from out of town. Soon, his Stagnancy became so overwhelming that it put him in a coma. Doctors suggested that he might not ever leave that hospital bed again.



It is beside that bed that I have sat so many nights, waiting beside John with the radio on for some signs that heís still in there. I imagine some nights that heís fighting a battle with his own body and mind, simply hoping for another chance to show the world what he can do. I would love to afford him that chance, truly I would. He deserves that, at the very least. He always had so much promise.

But so much time has passed, and weíve seen no change. Has even John given up hope of coming back to life? Has he suffered the ultimate defeat in the face of his torpor?

With the inability to speak for himself, the decision rests upon my shoulders. And Iím tired. Weíve been through countless treatments, hundreds of sleepless nights, and unrealized hopes. Though it may sound insensitive, I simply donít know how much more I can take. The stresses of a comatose son are nearly more than I can bear.

NoÖthey are more than I can bear. I look at myself in the mirror of the dimly lit hospital room, hearing only the slow, methodical beeping of Johnís life support. I think about the hours that Iíve wasted on John. I think it and immediately shudderÖhow can I have such a thought about someone who I love so much? Am I truly ready to give up?

Before I realize what Iím doing, I have called Johnís doctor into the room and uttered two simple words: ďdo it.Ē After all this time, he knows exactly what I mean. I reposition the chair in the corner, preferring not to see his face while it happens. I donít think I could handle that.

So I simply wait for the sound of the machines to cease, and I begin to whisper my thoughts to him, not knowing why. ďItís the only solution. Your body wonít heal. Your mind wonít recover. What else can I do? What else is there?Ē I say them for myself, I decide.

I close my eyes, knowing that Iíve simply given up. Was this a fight that could have been won? I donít know.

The sound of the machines cease. The doctor says something to me, but I donít listen. He leaves the room and shuts the door, and I realize that Iím alone.



The sounds of the radio penetrate my trapped consciousness, and I, as always, am somehow aware of my motherís presence beside me. Today, something feels different, but I canít put my finger on it. My struggle somehow seems more hopeless.

For years Iíve fought in this shell of a body to be what the world wanted me to be, and more often than not, I have failed. Stagnancy was something that I was not prepared to overcome, and when I was initially diagnosed, I was taken by surprise and I simply couldnít fight it. It took me over. I was fighting a battle that I was losing before it began.

Still, I know that I only need time. Just a little more time.

Nothing is sacred. I can change.

I am so ready to live. I want to come alive again. For the first time in my life, I realize what I have to do. I know thereís no one medicine that can cure me of my Stagnancy, but Iím ready to fight. Iím ready to live.

I hear the familiar sound of my doctor enter the room. I want to scream out to him, to beg him to give me the time that I need. I want to call out to my mother, and to everyone who has ever believed in me, and ask for just one more chance.

My mother and the doctor are discussing something, but the radio drowns out their voices. My life support machine beeps in time to the musicÖhow curious.

I feel my mother move away from me. The doctor is close. The radio grows quieterÖno, itís the beeping. It has slowed. It has stopped.

Just a little more time, I say again to myself. Iím so ready to live.

Then, the sound from the radio stops.
Tagged:    cblog    Opinion Editorial  

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