The bartender was a young guy who wanted to go to law school, so I leaned back in my chair and smugly pontificated about the slings and arrows of practicing the law. I can’t even tell you the dude’s name, but it gave me a superior feeling to give him advice. Having taken on a couple of high-profile cases, I’d been on local TV a bit recently, which really gave me license to lay it on thick. I was the center of my own attention, a big man, a rising star on his way to fame and fortune, the essential ingredients of American success.
As the barman poured me my second beer, though, he did a double take and asked me what happened to my eye.
I went to the bathroom and saw the red swelling above my right eyelid. Immediately I notched it up to some mountain allergy. I downed the rest of my beer and went home. The next morning I woke up and the inflammation was about the same, but had spread to my cheek. I needed to be in court that afternoon, so I borrowed my girlfriend’s base makeup to cover the splotches. Outside of wearing makeup, I felt good and strong: a winner sporting a nice tie and a snazzy pocket square. That night I went to the gym.
Two days later, I was in court. The swelling around my eye had gotten angrier. I told people that it was a bug bite that I had gotten while mountain biking. It was an acceptably macho answer, but I started to feel increasingly drained and exposed. That Saturday I went for a walk to the plaza here in Santa Fe. It was a pretty day. The law work was done, clients were happy, new clients to meet next week. The day was mine.
About half way to the plaza from my house, I suddenly felt a burning sensation in my hips, lower back, legs, and shoulders. It was almost like someone was holding a lighter against my body, except from the inside. I turned around to go back to the house, but had to sit back down on the curb. My shirt was soaked with sweat. I forced myself up, walked another 25 feet, then had to sit down on the curb again. I tried to waive down several people but no one would stop to help me.
I was shaking when I got to the front door of my house, tremors were rolling through my body so that I couldn’t control my hands enough to pull my keys out of my pocket and get at the right one. It took me almost five minutes to get the key into the lock and unlock the door. This may seem like such a small, insignificant thing but it took both hands twisting hard as I could to actually open the door, then all my strength to keep it open. Tears streamed down my face; some from the pain rushing through me, most from the realization that I was in deep trouble. An hour ago I was walking to the plaza on a beautiful day, feeling my success. Now I was using my forehead to hold open the door. Two weeks earlier I was bench-pressing nearly 250 pounds, but now my arms couldn’t even open my front door.
After finally getting inside, I collapsed on the couch. It was 10 a.m. The pain was so bad that it was almost a gift, as it made me go in and out of consciousness for the next eight or 10 hours. Being awake was being in hell. When I moved, rolled, or even flinched in any direction, the razors I felt inside would tear at me. Closing my eyes, I saw the Sterno cans that you take camping, which produce a tight, blue flame. The flames traveled from joint to joint, muscle to muscle, usually starting at the torso and frying outward across my body. I was locked in a prison. I remembered stories of the Santa Fe Prison riots, the Hate Factory, where the inmates went from cell to cell with blowtorches, the ones who were waiting hearing the screams of the ones being tortured.
My girlfriend got home from work around 8 p.m. and found me naked to my shorts, dead white with purple rashes all over my body. She helped carry me out to the car so we could go to the emergency room. I had to use both my hands to lift my legs up into the front seat. I didn’t have the strength to sit up so I kept rolling over to the side. Every bump, every little patch of dirt on the road that caused the car to shake or tremble, made me wince in pain. Even more so, I was afraid of the unknown predator that was eating me alive.
Herein now we begin the total destruction of the author of this piece. Exit the mountain bike rider, the lawyer, the writer, the together guy in the black suit having a beer after work. Enter the dehumanized human pin cushion—Mystery Blob!—now only known and referred to in the third person as though he has ceased to exist.
Doc #1: “It’s gotta be a virus, poke him again!”
Doc #2: “It’s tumor-related, stick him for another test!”
Doc #3: “It’s a blood disease gone into his artery!”
Doc #4: “Stick him with a spinal tap!”
Doc #5: “Take some blood out of his neck!”
Doc #6: “Cut a chunk of his shoulder for a biopsy!”
Doc #7 to Doc #8 standing above Mystery Blob: “He may have stroked let’s go ahead and run an M.R.I. and see if we pick up any brain damage”
Doc #8: “Exactly, the paralysis and damage—”
And then, our soul-killing favorite whispered in the corners of hospital rooms, sometimes halls, almost funny if there was any funny left:
“I don’t know what he has, but it’s the worst case of it I’ve ever seen.”
Meanwhile, the nonexistent Mystery Blob chokes and cooks himself from the inside. He’s a third person even to himself now because he has to go someplace different to get through it. Eyes staring at a stain on the white ceiling, he goes to other places as his muscles cook in the soup of the antihistamines that are attacking him. As his immune system turns on his own body and eats away his shoulders, arms, and legs he transports himself to better places where he is still a healthy person without pain. As his body attacks him and he loses function of his hands so that they are shaped like claws, he goes back to long beautiful nights of writing where his hands were an extension of his soul.
As the disease attacks his throat so that he can no longer swallow or eat without choking, Mystery Blob dreams of great dinners in big cities, where he wore all black and was able to pick up the check for everyone because his law firm was doing well. As he lies in bed at night, unable to sleep due to choking on his own saliva, Blob forces himself to get through because there are reasons to live: reasons like justice and the good fight and people who need him. As the nights of sleeplessness wear him down and the days of pain take their toll, he tells himself that he will kill himself in 12 hours. Then when he gets to 12 hours, he tells himself that he will kill himself in another 12 hours, and so he makes it 12 hours by 12 hours, wasting, withering, watching the color fade from his skin, unable even to get up, weight going from 200, to 185, to 175, 165, to 160 in no less than the span of five weeks until the thoughts of suicide no longer work for him because the shriveling entity is on his way to a good old-fashioned unassisted death.
Did you know that Mystery Blob once lived in Spain? He would walk the streets of Madrid late at night, dreaming of adventures, protests, and great novels. Did you know that Blob had friends, comrades, and stayed up late at night drinking wine, laughing? Did you know that Blob still had plans to take on the sterner challenges, and would try to find the light of justice in places where others wouldn’t look? Crime, disease, sickness, death: We are all just a hair’s breadth away from being perpetrators and victims, healers and wounded, all the things we love and despise. The only sin is pretending that we are somehow better than the worst among us, that there are things that we could never do, lines that we could never cross. No one is born good. Morality and integrity can only be understood as they are happening. They are written on water, blown across the sand. There are no such things as good men, only men who reside in moments of goodness, often in spite of themselves.
Ultimately, they came back with a diagnosis. Dermatomyositis, worst case anyone had ever seen. It meant that my immune system reads my muscular system as an invader, so that it sends white blood cells and histamines to try and kill it. I am in a constant state of assault upon myself. A twisted system, a warped constitution, a fabric being torn apart. Cause could be environmental, genetic, no one really knows. The ratio of the disease is about one out of every 2 million people.
Of course, I could take a perverse pride in having something so rare. To be rendered to a wasted nothing by a common disease would have been too run of the mill. Let’s get badass, let’s get biblical. Let’s go Book of Job, old Catholic school days, where my spirit is broken, my days are extinguished, the grave is ready for me because it has taken everything I cared about, everything that makes my life worth living. My throat muscles so that I live constantly drowning in my own spit, my strength so that I am reduced to dependency on family for the merest acts, like putting on a shirt on or getting dressed in the morning, my hands so I can’t write without torture, and my body so I can’t exercise or even walk to the mailbox so that I can get some from fresh air and clear my head. My soul loathes my life, says Job.
In time, the docs were able to design a cocktail of drugs that turned off my immune system and turned my brain into a psychotic voodoo of disconnected memories and dissociations. I had a 15-minute conversation with my dog about football that I am now convinced did not actually happen. My days bled into one another, a dark soup of confused memories and pain. I went nowhere. Did nothing but stare at the ceiling and immerse myself in regret. All the places I had never been, all the people I had mistreated. I was a selfish man who could not see more than one inch in front of his face. I only understood the world in terms of how it affected me. I had lived my life like a child, thinking of myself at the center of existence. I had been a bad friend to people who deserved more. I talked when I should have listened. I always took up the center of the room when I should have taken up a quiet corner and made myself small.
What was this obsession with always having to be a big man? With always needing to pontificate and show off? I fixated on my death and what it would really matter? The answer was not much. I thought about my disease and the fact that I had been reduced, cut down. Again, the answer is that it was not that big of a deal. One wants to believe that they have unique worth and that for them to be taken out of the game would be a tragedy from which the world could not recover. But we are not individually necessary. We are near meaningless as individuals. It is only in our attempts to bring life to justice that we matter.
As I was processed through the factory—one more product on the assembly line—I felt empty and dead. But as I looked beyond my own tiny experience—a part of something larger—I then felt gratitude and love. I was thankful for the times that had been given me. I was thankful for the friends that I had made and the amazing things that I had seen. I came to realize that the greatest misperception of my life was in thinking that I was fighting for justice and fairness when justice and fairness were really fighting for me. Anything I had put into this idea of human dignity had paid me back a thousand times over by giving me a meaningful life. The great philosophies, the great moral concerns, the hard thoughts, the introspection, the questions—these were the great gifts of life. They had gotten me through the storms. I wasn’t the one who had sustained them, but they who had sustained me.
Until now, my life had been sad because I could never see beyond what was right in front of my face—the sightline of a coward, the view of a man who was never free. Now, laid to waste, I saw that my so-called identity had been an illusion. Have you entered the springs of the sea? Or have you walked in search of the depths? Have you comprehended the breadth of the earth? Tell me if you know all this? (God asked Job.) Now the IV in my veins dripped the holy water that I dipped on my head when I was child. They were the sign of the cross that I made before I knelt down to say my prayers before statues that were real. They were the light in the candles at the altar, the hymnal music that filled the air. They were my church and savior. These ideas found in books and speeches that seemed so optional, or secondary, or so far down on the list in comparison to money, transaction, being a big shot, and my beloved American success. Therefore I have uttered what I did not understand, things too wonderful for me, which I did not know. (Job said.) Now, I just wanted to be a guy who loved his friends and whose friends loved him because of words like trustworthy, integrity, and a fighter who could laugh.
All the velvet ropes and parties in the world couldn’t match up to one dinner with my sister, trying to figure out our lives and talking about her new job. All the media attention on the planet could not speak to the worth of a sleepless night spent with my girlfriend, now wife, talking about the lessons of suffering and loss. I had spent my life always trying to be proud of myself, when it was much easier and actually made me feel better to be quietly proud of other people. That was it: other people. In the greatest depths of my misery, when the pain was at its most intolerable, when I didn’t think that I would make it: I turned to thoughts of other people and they saved me.
Hell is not other people. Only an elitist French philosopher with a great social circle and a ton of famous friends would ever say that. Hell is being so blindly self-absorbed that you don’t see the poetry of others. Hell is being so insecure that you can never be equals with anyone else. Hell is being spiritually isolated when every cell in your body cries for communion.
Several nights ago I felt so weak that I was scared to fall asleep, fearing that I might not wake up again. The doctors said that I was deteriorating due to dehydration and malnourishment. Since August I’ve had trouble swallowing, which means that I can’t sleep more than two hours at a time due to choking. The torture of it all got to me that night. The exhaustion, the disease, the pain, being cut down, losing everything that I had worked so hard for, the medications coursing through me, and the fact that I may die long before I ever expected to—I started to weep. Really cry from the deepest part of my being. All I wanted was to throw the football one more time with my friends, walk to the pub on a fall day, have a beer and talk about our lives. Everything else, you could have it. The want for fame, the want for success, the glory and being the center of attention: empty, meaningless, lies born of a consumer society that turns people into something less than what they are.
The only honest and enduring thing is that which makes something beautiful from this difficult and sometimes wretched life, something of substance from this broken petty world. The poetry of the heart cannot be stopped, or shut out, or chained because it is no less the air we breathe and that sustains us. That while walking through the projects of our souls, one could look up at a broken glass window, and hear Ode to Joy emanating from it. And it is in these things, this resistance, that our lives find their humble mooring and cease their drift at sea.
I have memories of who I once was, but they are beginning to fade from me. I hear words like lawyer and writer and they fall from me like dead fruit. I don’t know who I am now, or who this new person is going to be. I am like a tree who has lost all its leaves in the dead of winter, bending in the cold wind, not knowing if it will break or bloom.