One of the first things you will notice about my father is that he looks tortured. His grin is wide; his eyes roll beneath the lids; one arm stretches stiffly upwards, while the other snakes around his back like a vine. He’s like a clown frozen in some grotesque gesture.
It’s been several years now and still the sight of him amazes me, especially the way his big toe delicately touches the floor. It’s as if he were pointing to a precise place on a map or to a truth profoundly misunderstood.
For my mother, that foot has been a constant source of anxiety. From the very beginning, she dressed my father in pajamas and a robe, often with some kind of clever t-shirt, with the idea of making him look comfortable. But no matter whether she covered it or restrained it, sooner or later, the toe reemerged pointing in the exact same way.
I prefer to celebrate his illness whereas her instinct is to conceal. And this is the major difference between us.
The illness is “a rare degenerative disease, originating in the cingulated cortex, affecting the limbic system.” I say these words now, but when my father was first diagnosed, I had no idea what they meant. I was fourteen.
One day my parents came home. My father walked into his bedroom and shut the door. My mother slammed pots and pans as if to make dinner (though I’d never known her to cook.) When I asked what happened, she exploded:
“How can he say there’s no hope of recovery? How does someone say that?”
Now you may not believe me, but I reacted in the only way that felt natural: I ignored it. We rarely spoke about personal things. If I ever expressed feelings of fear or anxiety, my mother would say that I was “thinking too much” or that I should “something productive.”
And though my mother was in tears and my father locked himself away for days, I felt nothing. I merely went back to my homework. It was a math problem. It was about measuring the dimensions of a garden.
No, the explanation wouldn’t come until many weeks later when my mother arranged for me to talk to the doctor who had been treating my father. She dropped me off in front of his office, I walked in and announced myself. The receptionist told me to wait.
The doctor sat in a chair across from me with his hands pressed together as if he were about to pray. I remember thinking he was young, but very serious. He wore thin, almost invisible glasses. His brow arched upwards and downwards as he spoke, so that I almost felt like it was his forehead and not his mouth that was doing the talking.
“Your mother asked me to tell you a little bit of your father. What he might be going through,” he said. “You understand, He is very sick. At first it might not seem that way. He’ll seem lethargic at first. Tired. Simple tasks might frustrate him. He might have a hard time concentrating or he might become irritable or depressed. But this is always the toughest time, right before.”
“Right before what?” I asked.
“He enters PVS.”
I didn’t understand.
“P.V.S. A Prolonged Vegetative State. Most patients then experienced prolonged periods of mutism, which devolved into an inability to communicate. This was when your father will enter into a coma where no one could say what he experienced.”
“What do you mean, no one can say? Does that mean he’ll be aware?”
“No!” said the doctor. “Of course not. Not in any scientifically demonstrable way.”
He stood up and open his door. He gave me his card. “If you have any questions, just call my office. But for now, you should try to spend time with him, while he’s still active.”
I left that office sure that I would never try to spend time with him. It was easier to pretend my father was well. Weeks passed and my father once again became the unremarkable man I knew. By the time school began that fall, I had nearly forgotten about the disease altogether.
Then, one morning, my father ruined it.
“Matt!” He was almost running down the hallway.
He was dressed in a suit as usual, but something was amiss. He looked too free. But then I saw he wasn’t holding his briefcase. His hands dangled and danced around his pockets like two pale birds.
“Let’s go together, okay?”
“But you usually drive,” I said.
“I can walk too. Can’t I?”
I looked to my mother who was standing in the kitchen turning pages of a newspaper. She clasped her earing. It struck me: this had been planned.
“Okay…”I said. What choice did I have? So began a series of awkward morning walks with my father.
For the first few days, we walked in silence. Later, he shared stories about his life and about my mother. I knew he was trying to bond with me but I couldn’t get past his weird, optimistic tone of voice he had. After a couple of weeks of this, I wanted these walks to stop. So I decided the best way to do this was to give him the chance to say whatever it was he thought he needed to say.
“Dad, how do you feel?” It was a simple question to ask a sick man.
“Why?” he asked, then “Oh, that. Well, you know, doctors don’t know everything.”
“But the doctor said…”
“I’m fine!” he snapped.
I can’t tell you how exasperated I felt at that moment. My face felt flush and swollen. Here I was trying to ignore this illness–something deep down I knew was fraudulent–all the while, my father was in as much denial as I was. This family!
We came upon a little outdoor café near my school. “Hey, let’s have breakfast,” he said. But I declined.
“Are you sure?” he said, sitting and opening the menu. “They have waffles!”
“I have a test,” (I didn’t.)
“I’ll write you a note.” He searched his pockets for a pen and paper.
“No, Dad! I’m not having breakfast with you. In fact, I’d appreciate it if you’d stop following me to school. You never did it before. If you’re not sick, then I can’t see what you’d need to start now.”
My voice echoed. I turned toward school and did not look back. I was sure that this would be the last walk we’d be going on.
That day, something in me changed. I worked hard. I lost myself in my studies. I tried to stay at school as long as I could, just to avoid having to see my father at dinner. But I ended up seeing him a lot sooner.
On my way home that afternoon, I came to the little cafe, and there he was, still sitting in the exact chair where I had left him that morning.
“Have you been waiting for me?” I demanded.
He didn’t seem to hear me.
Dad! What the hell do you think you’re doing?”
“Oh!” he said, surprised. “Changed your mind, eh? Decided to sit with your old man after all?”
He was still holding the menu. A waitress came out to see what was happening.
“It’s been nine hours,” I said.
“Don’t be ridiculous,” he said. Then he looked at his watch.
Sometimes the hard truth is deeper than we could possibly imagine
After that, there was no more pretending. Or at least, not by me.
He was visibly slower. He stooped as he walked. He stopped working. He spent hours sitting in our backyard, sometimes staying long after dark. One night in August, I came home very late. As I walked up the steps to our back door, I saw him in a corner of our yard, where a tangle of Rose of Shannon, creeping vines and bushes had overgrown.
I walked toward him.
“Dad? Aren’t you getting eaten alive out here?”
I got closer. I almost had the feeling he was sleeping. But then I noticed his eyes were open. I drew a few inches from his face, but he hardly moved. Only his eyes met mine.
“Can you hear it?” he whispered. “Listen. They’re growing!” His eyes darted to the canopy of bushes above him. “Cell by cell, segment by segment, leaf by leaf. They are trying to position themselves for tomorrow when the sun comes up, right over there. It’s a battle. It’s waged every night. So many stalks trying to catch a glimpse of the sun. ”
He touched my hand. I pulled away. He did not move. He seemed frozen in his chair. Only his eyes followed me. A spider crawled on his shoulder.
“Jesus!” I knocked it away, but he remained still.
“Ah, Matt, I wish I could explain…”
“What do you mean? Do you need help? Are you feeling sick?”
“Sick? I’ve never felt more healthy.”
In those final, still months, our house was terribly quiet. My mother who in her own way seemed as changed as my father was constantly in tears and had grown slightly erratic. She came to my room and asked if I would take my father to the botanical gardens.
I parked the car and went into the trunk to get his wheelchair when with a great burst of energy, my father to open the car door and start walking away. I hadn’t seen him move like that in months. I yelled to him, but he kept moving. He walked through the park seemingly without any direction. We came to a little greenhouse where a small crowd had gathered around a bizarre looking plant. It was maybe six feet tall with a single enormous flower. Its great red leaves surrounded a monstrous stamen which was pointed straight up toward the sky like some kind of radar. It smelled like rotten meat. Insects of all kinds seemed drawn to the smell.
My father froze before the plant, then he sat down on a bench. I sat beside him. He took some breath.
“Some terrible things aren’t as bad as people say they are. Sometimes, they’re more beautiful than anyone can imagine.”
“Is that why you keep pretending you’re not sick?”
“No, no…It is the pressure,” he said with a gasp. “It is the pressure that I feel. It’s…tremendous.” He turned away from me and rested his wide eyes on the flower. “But look!”
I turned to look at the alien flower. It struck to me how intense, alive, and potent it was. When I turned back to him, my father curled up into the position you see him in today.
My mother had made a room for him. It has a hospital bed and a reclining wheelchair. There were three windows and many plants all to make the situation look “cheery.” But it was anything but cheery. He literally became the elephant in the room, a weird audience in front of whom all our worst qualities emerged.
My mother went on trying to incorporate my father into our lives, and I still saw all her doting as a sham. We used him as leverage against each other. If her date went badly, her guilt would come out on me. “Did you visit your father today?” she would demand. “Don’t think he doesn’t know how badly you treat him,” she’d say. One time she really got on my nerves–she had gone out with a male friend from work and came home late– and I said to her “Don’t think he doesn’t know that you’re a slut. Look at him. He sees what you are!” She slapped me hard across my face.
I tried not to be home after that.
On one of the last days before I left for college, my mother was out so I brought this girl home with me. She had been a kind of obsession for me all through high school. I decided to ask her out. But instead of going to a movie or dinner, I decided to introduce her to my dad.
“What the fuck.” She froze at the doorway. “What’s wrong with him?”
“Relax,” I said. “He’s been like that forever.”
I lit up a cigarette and blew the smoke into his face. “See, he doesn’t react.”
“This is weird,” she said. “How do you know that he can’t hear and see? Look at his eyes, for god’s sake. They’re open!”
“I’m telling you, he’s a vegetable. He’s been like this for years.”
I convinced her to sit down beside me, but she was not calm. I told her the story of his how he got sick and it seemed to make her more comfortable.
“Why is his foot like that?” she asked.
“No one knows.”
“And he really doesn’t see?”
“Or hear or move. He just sits there all day long.”
Slowly, the questions about my father gave way to questions about me and for the first time, I was talking. I told her about the doctor and the day at the gardens. I told her about my mother. I told her everything. And she listened! Finally, someone was listening! Then, without thinking, I came beside her and pulled a strand of hair from her face. I went to kiss her, but she pulled away.
“Jesus!” she yelled. “In front of him? What are you some kind of freak?”
I reached for her and second time and she got angry and said she had to go. I walked her out.
When I returned to my father’s room, something about his stare and his smile and that ugly foot touching the dirty floor got to me.
“That’s your fault, you know? Did you see that? Did you see what you did to me? You stupid ugly little man. You turned me into this. This is your fault! I’m sick of looking at you. I am sick and tired of seeing your ugly face.”
Then, I took his wheelchair and push him into the walk-in closet and closed the door and walked out of the room for the rest of the day.
By late afternoon I cooled off. I opened the closet door and there was my father crumpled over himself. His arms were no longer stiff. His grin was no longer taut on his face.
I pulled him out of the closet. Of course, he was silent. I tried propping him up in his chair, but he kept slipping down. I increased the fluids pumping through his arm, which the doctors had taught us to monitor because he couldn’t eat enough on his own. I pulled the curtains and opened all the windows as wide as I could so that the whole room was flooded with light and wind and summer. But, still, he did not move.
It took all my nerve not to call an ambulance. For two hours, I waited for my mother in the living room.
When I heard her car pull into the driveway, I opened the front door. She looked at me and knew something was wrong. “What is it? What happened to your father?” She pushed past me and ran into his room. I slowly followed her into the room, sure that she would be upset.
My father was once again upright. The palms of his hands were open and wider than ever.
“You opened the windows in here. Good! It’s much healthier than keeping him all stuffed up like he always is.”
The second discovery occurred a year later when I was enrolled in a video editing class. I needed to digitize some analog tapes. I found some in the basement. They were mostly family vacation tapes. Junk that o one had ever looked at. But as I was previewing the tapes in fast-forward, some dark footage passed before the image of my father came up.
This time he was alone. It was more recent footage. He was holding the camera on himself. He said:
…and, uh, it’s the strangest thing, you know? Because I don’t want to spoil this time with you and your mom by scaring you or telling you how I feel because, um, it’s strange…but not terrible…just a sensation. And I’m not sure…that…you’ll understand. But, I have this feeling…and I’m not sure if it’s the medication that they’ve put me on, or maybe that I know my mind is going and I’m hallucinating or something…but I have this feeling that everything is connected…no, not that…that sounds stupid…not connected…but I can feel the words that people say to me. I feel it (here he starts rubbing the inside of his arms and his chest) here and here. Loud words. And actions from a distance.
Apparently, he was waking up at night, or spending time during the day, making these tapes secretly. There must have been fifty or so different instances.
Here’s another interesting point: When the sun hits my skin. It doesn’t feel hot. I mean I’ve never liked the sun, Joan, you know that…but when I feel it, it makes me tingle like I was being aroused…sexually…but so intensely that it is almost painful. I mentioned this to Dr. Khamis in an email but he only asked if I felt feverish.
He was constantly talking about people being disconnected. Sometimes he would be angry at something someone had said or did to him. Other times, he seemed fearful:
…now I’m a little…I’ve stopped eating, as I think everyone has noticed. I’d like to tell you about it, but I can’t always speak. And I get scared because I have this sense that…or, I feel like people are moving very fast…so fast…like the way a car or a train shoots past you. And I’m having a terribly hard time hearing people…or understanding them. When Matt speaks, for instance, it sounds like one note being played by one long breath. All I can do is just…pretend….
One of the last times, he stared at the camera for ten minutes. He didn’t speak. He didn’t move. Finally, the camera slipped off of wherever he had it perched. When it came into focus, I saw his big toe lightly touching the floorboards.
From that point on, I started looking a lot closer at my father. I came by the house more often. I took pictures. I drew him. Every one of my projects at school became about my father. The other students criticized me because my work was so one sided. Even one of my professors finally took me aside and encouraged me to “explore other avenues.”
But I felt that something more was needed. I needed to go towards, not away from my subject. I needed to become a scientist of sorts. But as I wasn’t a scientist, Art school was all I had.
I decided to contact that neurologist who explained the disease to me, Dr. Khamis. I had to make an appointment because I could not think of a way to get to talk to him. The nurse called me into the examination room and when the doctor came in he turned to me and said “so what’s the problem exactly?”
“My father is catatonic.” My answer was clearly out of the range of expected responses. I continued: “A number of years ago you diagnosed my father with a terminal degenerative disease. You said that he would become unresponsive.”
The doctor sat down. A wide smile came over his face. “You’re the son.”
“It was a privilege to have witnessed your father’s case,” he said. “I have not seen it since. Truly, it was a rare and special situation and I remember your father handled it well.”
I pulled out my notes, my pictures, everything. The doctor looked suddenly uncomfortable.
“I have noticed a few things,” I said. “I’m not a scientist of course. But I have noticed a few things that I would like you to consider. I’ve made a list.”
I gave him my spiral notebook in which I have gathered all my observations. I could feel myself breathing a little easier because they were in his hands. He looked them over lightly. He read one or two passages I’d written.
“You see how strange it is? You see how easy it would have been to miss it?”
He closed the book. “This isn’t science.”
“But I observed them. Multiple times. Look at my notes.”
“Yes, I see that. Very thorough. Is that a drawing of your father?” He seemed impressed. “You must understand, observation, counts for very little today. The observable world is a world of illusions. The sun moving around the earth, for example. Or the interplay of light, which are optical illusions. Insight into neurological phenomena, at least in this day and age, is beyond simple observation.“
“But that is exactly the point I’m making”
He gave the book back to me. He smiled.
“Look, it’s natural to feel the way you do for your father. Especially now, at your age, when your father would have played a more important role in your life. Are you married? Do you have children?”
“You should. Don’t delay,” he said, guiding me to the door. “Believe me, if there was something I could do for your father now or then, I would have done it. For now, stay with him. Who’s to say that he can’t feel you near him or sense your love? Who’s to say that he isn’t experiencing his life in a different way?”
“You are, doctor. That’s exactly what you’re saying.”
Of course, I wouldn’t be speaking this way if I wasn’t certain that the doctor was wrong on this matter. For had I known then what I know now, I could have said to the doctor: to observe is to see, and to see is to look, and to look is a choice. And finally, here is the most important lesson I have learned: One must not avert one’s eyes from the strange.
I came to this conclusion thanks to a film class I took with my instructor, Ari Rosenthal, at the Pratt Institute, who to this day is my father’s greatest advocate. His assignment was to come up with ideas for an Internet video. Naturally, I suggested turning the camera on my father. “I’ll call it The Secret Life of my Father” I said.
Ari was skeptical. Already no one would work with me because of my obsession. And as the members of my class broke off into their familiar cliques, I was left to work on my own.
Having no real experience with the equipment, it took me all Friday afternoon to set up. I started the camera and studied my father. He was that same grotesque figure, a clown. But his toe. There was such an elegance. It reminded me of a ballet dance on point. I focused on that. I pulled the sock off his foot. I turned the camera on and just filmed until I was tired.
On that Sunday, I went back to collect the equipment. I developed the film expecting it to be mostly useless. But What I discovered amazed me. I failed to see that the film was being shot at 6 frames per second. My father was moving! His face and palms were turning as if on an axis, so slowly that it was impossible to notice.
I showed it to Ari and he and I worked tirelessly trying to capture the slow snake-like shift of his wrists and palms. We captured the curling toe as his toenail cut through the sock and worked its way to the floor. At higher speeds, the barely audible creak of his wheel chair, the cracking of his joints, the slightly increased labor of his breath became almost symphonic, like the sounds of insects on a summer night.
What was ultimately laughable was that I couldn’t even convince my fellow students of such a miracle, let alone a doctor. They accused me of manipulating the film, of using editing tricks. I remember how Ari stood up and yelled at my classmates. “You’re missing the point,” he yelled. A student told him to stop favoring the idiot.
“Excuse me?” said Ari.
“He’s as useless as his father. He shouldn’t even be in this program.”
Then the room erupted in debate. Soon they were twenty voices yelling all at once and in all directions. Ari was doing his best to keep it together, but as he came of the pedestal, he slipped and fell. Someone thought that he had been hit. A fight broke out. And then it was not just voices, but also fists and arms, tangled and wrestling.
We were like so many stalks fighting for a glimpse of the sun.
I recalled my father saying, just before I was hit and everything went black.
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