From the Diary of an Invalidby Richard Burgin
The healthy body is the great diverter from thinking about the world. The invalid, however, has little to do besides think, often about finding ways to move around his home, which has now become a kind of obstacle course.
I'm trying not to be a bore in my journal, at least, like other people with limited mobility who endlessly describe their symptoms and lack of progress. I'm trying not to bore myself. Nevertheless, I need to make a few observations. When you can't run any longer or even walk for any distance at a normal speed, you have memories of running or of taking long, leisurely walks—memories that occur without warning. And when you don't have memories, you begin dreaming more than you ever have but never about your actual condition.
…I'm lying on my back on a special couch that's been adapted for the purpose of watching my young son, Andy, running back and forth from the family room where I am (and where I spend 80% of my time watching TV or sleeping) through what used to be my office to the living room and back. He runs with a kind of frenzied ecstasy, arms raised and waving like a receiver trying to show his quarterback that he's open. When I'm not remembering, I watch him running. It always puts a smile on my face. Later we tell stories together about an imaginary world we've co-created. Our stories about this world have been going on for years.
…About nine months ago I began to feel a sharp sciatica-type pain in both my thighs. The pain was intermittent but severe enough that I finally went to an orthopedist. The x-rays he took revealed a degenerative disk in my back. The doctor then explained the concept of "referred pain" to me (i.e. the problem actually originated in my lower back but I "felt" the pain in my legs). He said that could explain the leg pain "from an orthopedic point of view." However, he strongly suggested that I see a neurologist. I ended up seeing three of them as well as two internists and two "Pain Management Specialists." It all quickly became a maze of contradictions and confusion like trying to make sense of a world deeply underwater. One said I was suffering from "pre-diabetic neuropathy." One diagnosed me with Parkinson's, another said he thought I had Restless Leg Syndrome. Others said they simply didn't know what I was suffering from. The invalid has to learn to live with mystery, including the mystery of doctors and how little they listen, how little they know. Meanwhile, my pain, and especially my weakness, was increasing steadily. Finally, I started a series of epidurals, which so far have brought me some relief from pain and a small increase in strength. Also, I managed to get a medical leave of absence from work through I continue to co-parent Andy (who is with me half the time—I wish it were all the time) with his mother who lives less than two miles away.
When Andy is at school or at his mother's I retreat more into my past. Many of my memories are of times when I could run and jump or otherwise move freely. I have lots of memories of basketball that I played mostly on outdoor playgrounds in Philadelphia and New York and at other times in my life in Santa Monica or in St. Louis where I live now. They are short memories because I try to shut them down but part of my brain must need to remember them, must cling to them like a desperate lover.
TV is a fairly reliable memory killer, as it's a thought killer in general, but I can't watch it, or movies, all the time. I sometimes try lying on my bed and listening to music on my CD player. Often it makes me think of women in my past, particularly of places I went to with them on vacations, and I'll be flooded with longing or regret. I've learned to avoid the very composers I love the most like Mahler and Prokofiev because they've now too painful to listen to. Other times, I lie in bed and read a little, until that gets too uncomfortable, or else lie in silence and then I often begin to remember my mother and sister and lately many memories of my father. At times, these memories fuse with my dreams and when they've over it's hard to tell which it was. Did I really once run around the house with him? Did we really once routinely play Chinese Checkers or chess? (I have many memories of serious conversations with my father but very few of playing with him.) Did I also occasionally sneak into his closet and steal the change from his sports jacket? And could I really have snuck into his bed when I couldn't sleep? Something he later told me I could always do.
My father was a successful man but a modest one. He was born in Poland, near Warsaw and didn't come to the United States until he was 21. Yet he spoke perfect (though heavily accented) English. He was a gentle man and a short man but he was strong and had an iron will. He was the eldest of four brothers and a sister but outlived them all (two brothers were killed by the Nazis). He never went to high school but he could speak seven languages. He knew a lot about politics, music, philosophy, and had, himself, quite a philosophical kind of mind. "Art is the last illusion" he told me, eternal life being the first. He also once said "fame and Christmas are for children."
My father had me late in life and I was always worried about him dying, though he lived till I was 33. I also was an older father and wonder lately if Andy has similar anxieties about me. My father would have loved Andy, I'm sure, but he never lived to see him. My mother did but by the time Andy was two or three she was already suffering from dementia, dictating repetitive incomprehensible messages from her chair, which she sometimes thought was a car, just as she sometimes thought I was her husband.
When you are an invalid you live profoundly separated from the rest of able-bodied people regardless of how often you spend time with them. Very shortly after your illness strikes, you realize that no matter how genuinely sympathetic or curious people are, they can never understand what you're feeling (which you yourself can't describe), either physically or emotionally. Unless it's happened to them recently, the only thing other people can really understand is a cold.
In the case of Andy, he's said nothing about it and I prefer it that way. It would interfere with our stories and joking. Lately, an important shift in our ongoing story has occurred! Some of our main characters, including Garret J. Gunderhold, have left Rinaldia and/or Rhodnesia (both countries in the continent of Crasia) for the United States. It's the first time in years that our story is taking place in a real country. Moreover Gunderhold, an international criminal, movie producer, and amusement park mogul has returned to his original position (when he was known as Aaron Wadimer and lived in the Crasian country of Wadova) as headmaster of a boarding school. Gunderhold, a ruthlessly ambitious sociopath, who loves fame and power and will do anything to get it, now wants to run the most prestigious and profitable private school in the U.S. and has established in Vermont The Gunderhold Academy at St. Albans. (Since I've told Andy that I used to go to a boy's boarding school, I think that might have influenced this radical change in the story). Not content to have merely one expensive school, Gunderhold has established a second campus in Kaputo, an island half way between California and Hawaii that recently became America's 51st state. But Gunderhold has other secret, nefarious plans. (He always does). Attached to the school is a large, mysterious and heavily guarded laboratory. The occasional, inquisitive student is told that it's a research laboratory whose work will greatly benefit the school. And, in a sense, in the bizarre mind of Garret J. Gunderhold it will. But Gunderhold's plans far exceed the school. His "stage" always encompasses nothing less than the world itself. This time his "genetic realignment" experiments involve his life-long obsession to create a man, indeed a race of people, born with wings and the capacity to fly. That dream may seem noble enough but he wants to use his winged humans to conquer Rinaldia and other Crasian countries like Rudolfa and Rhodnesia. Who knows what he has in mind for the US?
…Today the sky was such a brilliant shade of blue I couldn't resist emptying the trash myself. (Usually my assistant/caretaker, a recent college graduate, does that.) It takes 19 strides, steps really, for me to reach the garbage cans. Almost immediately, I start wishing I was playing basketball or bodysurfing in the Pacific or just walking on this cool September day for a mile or so. I start working on myself, trying to convince myself that I can do it and finally I try but can only manage about 50 steps. Later, my legs throb with a sciatica-type pain for hours, paying me back for my foolishness.
…At night I have a strange dream. I'm following my father, at first through the large, labyrinth-like house I grew up in. Later, I follow him outdoors, in the backyard, then to a place I've never been to before. The grass is high and thick, the trees as thin as cigarettes, and the sky is a somber, dark blue. I'm walking fast, almost running, but can't quite catch up to my 65-year-old father. For some reason, I don't ask him to stop, perhaps because, though he doesn't turn around, I know he knows I'm behind him.
Then the grass turns into a field of wet weeds. The ground also has become wet and muddy. I want to talk now. I want to say some magical combination of words that will make him stop but instead continue to chase after him through the dark weeds in silence. Soon I start to hear violin music, which seems to make sense, since my father was a professional violinist, only I can see that he's not playing, that the beautiful music appears to be coming from the lake just beyond us.
"Gofus, wake up."
"Sorry, Wad," I say, using the other nickname we have for each other.
"Why did you fall asleep, Wad? It's only 3:27 in the afternoon."
"It's because of the medicine I'm taking for my legs. Sometimes, it makes me tired."
"When are you going to get better, Gofus?" His shining brown eyes fix directly on mine.
"Soon I hope."
"Good, then you can stop limping around like a wad."
He looks closely at me for a second, checking to see if he inadvertently hurt my feelings. I have so many memories of swimming in pools, lakes and oceans with Andy, also of playing catch and wiffleball in our backyard, and of riding bikes to Forest Park, bowling, playing Hide and Seek or just walking, or traveling in general, especially in the summer. Last summer, because of my legs, we went nowhere though he traveled with his mother.
"Hey, Wad," Andy says, with a smile, "if you went to Gunderhold's lab you could get a pair of wings and fly."
"That would be a big improvement." I say, pointing to my legs. For a second, a serious look flashes across his face.
"What would you do if you had wings?" I say.
"I don't know. Gunderhold wants to use them to create an army of flying soldiers to annex countries for Wadovia."
"I know that. I meant what would you do, if you could fly?"
"I don't know, Wad. Let's go back to the story."
…That night I heard him repeatedly bouncing a ball in his room for over an hour. The next afternoon, after he got back from school, I insisted we play a game of indoor catch like we used to. We threw the wiffle ball standing five to ten feet apart in my living room for five minutes or so. It went alright but he said he wanted to stop and go back to telling the story. I am increasingly worried that he has no friends at school. I remember someone in a men's group telling me how he said to his 13-year-old son, "I want to be your friend just not your only friend."
…When Andy is with his mother, I have my worst times and my darkest thoughts. I'm alone much of that time yet rarely answer the phone or call anyone myself. My assistant shops for me and does some cleaning and other domestic chores. He's a young guy just out of college but he seems wary of me and always keeps his distance.
…Yesterday, the sky was a cloudless blue and the air crisp and spring-like, though it was mid-October. I was alone (Andy was using the computer in his room) and against my doctor's orders, I couldn't resist sneaking out for a little walk again. I felt a little unsteady (my Gralise and Nucynta no doubt often contributes to this) as I went down the stairs of my condo in my stockinged feet. I moved slowly and still my fingers trembled as I held onto the railing. I stared at the sky, at the tall trees in my small backyard and at the pine and magnolia trees in my front yard. I saw the trees move in the wind. It was very beautiful. When I looked between the trees I saw Andy watching me through his window.
That night I dreamt I was watching my father while he was studying a musical score. In the middle of his life, he began conducting (in addition to being the first violinist in the orchestra). I walked a few steps closer and soon could hear him humming some of the music. I think it was a passage from a Mahler symphony. His arms began moving rhythmically as if he were conducting an invisible orchestra. It was something I'd seen many times, and never tired of watching, in my waking life. Later, I dreamed that I was chasing him up a mountain. Since I was so much younger, I should have been able to catch him but I never could, and soon he disappeared (as if he were flying) over the mountain top.
…From my window I can see some of the people from my street walking their kids to the same elementary school I used to walk Andy to. I usually try to look out that window around five to eight in the morning and then around three in the afternoon when they walk their kids back home. It makes me envious sometimes but still I need to see it.
…As I said, my father had a philosophical kind of mind. Like me, he was baffled by the universe but unlike me never gave up thinking about it. I remember one conversation with him that dealt with mans' attempts to have his work, or art, endure. "If the world ends, man's work won't be remembered, but if it doesn't end and time is infinite, it won't be remembered either."
"Not even Beethoven or Shakespeare?" I said.
"Not even them," he said.
Now that I can barely walk and my father is dead I find myself thinking similar thoughts. My writing seems more vain and, in vain, than ever.
…Every night he was with me I used to kiss Andy goodnight on his forehead and say, "I love you" but he never said it back. That used to frustrate me (just as I used to be frustrated waiting for words I wanted to hear from certain women). I'm still able to reassure myself that he does love me, however. I've learned to go by his eyes.
Perhaps because neither my father nor my mother played sports with me (both were always playing their violins), I tried very hard to play sports with Andy but he wasn't interested in any of them. The only thing he would play with me was wiffleball in our backyard and even then he would barely tolerate the hitting and mainly enjoyed our telling the story while we played catch. As far as I know, he never played sports with any kids from his school either. I guess the fact that he is a computer, indoors kinda kid has turned out to be a kind of lucky break for me now that the outdoors is basically something I only see through the windows. "The outdoors is so twentieth century," he once said to me.
Tonight, from Andy's room, where the door is always closed, I hear the constant sound of a bouncing ball again as I have for the last few weeks. It could just be a random compulsive activity like the long time he spends washing his hands, but I can't help thinking he's trying to communicate something to me—perhaps his frustration that I don't play outside with him anymore and because he sees how I "walk" is afraid to ask me.
"Hey Wad, wanna play catch outside with me?" I say to him. I'm thinking I could do it if I had to for a few minutes.
"No thanks, Gofus. I'm still using the computer."
"But Wad, it's beautiful outside. There's not a cloud in the sky. Come on."
"Don't be such a Gunderhold about it, Wad."
"I just don't want you to be bored."
"I'm fine, Gofus." And that's that.
…The only time when I can move freely without pain is in my dreams. Too often, however, the medications I take mask or simply obliterate them and, if they even occurred, they're difficult to remember. Though I'm sleeping more than I ever have as an adult I've gone a week without remembering a single dream. It feels like I've metamorphosed into some kind of plant or barnacle. Meanwhile, Andy's had to wake me up the last two mornings.
"Wad, I'm up," he'll say, which means it's time to bring him his orange juice and breakfast before he goes to school. It's odd, or maybe not, that he never asks to help in spite of seeing how I walk, though it's also true he'll do whatever I ask with only minor complaining. Andy has always hated talking about painful things and can't even bear to describe a death or serious injury that takes place in our stories.
…When I don't dream, I turn to memories, though no sexual ones. It's too painful to think of that lost world in which in my own hideous quest for "power" I often behaved like a Gunderhold. I'm especially fond of remembering my last vacation with Andy when we ran along St. Petersburg Beach and swam in the warm water underneath the Florida sun. (I was only feeling intermittent pain then). It was maybe the last time I was more like a father and less like the grandfather kind of figure I've become since I lost my mobility.
Last summer all he did when he was with me was tell stories and watch DVDs of old TV shows like Seinfeld or Columbo or movies like Napolian Dynamite or The Birds—although there is no movie like The Birds. Yet he acted like that was enough for him…
…It's impossible for an invalid not to start doing some magical thinking. What caused my condition (perhaps when Pest Control sprayed my place for bugs), what could cure it—perhaps supplements like ALA or Turmeric. My "belief" that memory, dreams and the story with Andy, can somehow provide a replacement world or at least a shelter from the reality of my invalid world may be a form of magical thinking, too.
…Had a memory of Andy last night that made me laugh in my bed. When he was about four, we used to sometimes take baths together. One time in the tub, he stared at his penis and said with all earnestness "Does it fall off?" I said no but wanted to add, "Not if you meet the right woman."
…Today I saw him staring at me as I slowly got up from the couch to go to the bathroom. At night he began bouncing his tennis ball again at a furious pace. I managed to get out of bed more quickly than usual to say, "Hey, Andy, what's up?"
"Nothing, Gofus." Then he opened the door. "Oh, by the way, Wad, Gunderhold got his wings and flew away."
"Yeah, Gunderhold is dead."
…This afternoon, before my Nucynta and Gralise kicked in and made me too dizzy, I slowly walked outside a few steps, again. The wind was blowing through the trees. I only stayed out a minute at most but I touched the magnolia leaves and the pine needles from the tree next to it. It was still beautiful.
…That day I finally remembered my dream. I was in the Berkshires walking through the grove that leads to Lake Mahkeenac with my father and Andy. We were all joking and laughing although I can't remember what any of the jokes were. We were in our bathing suits and proceeded to walk into the lake where we soon began playing catch with a brightly colored ball. Everyone was smiling while we played waist deep in the water. Andy was smiling from ear to ear. I thought, now, at last, he has a new friend. Then my father said we should all swim out to the raft, which was odd because the water there was over our heads and my father didn't know how to swim. But somehow we all made it out to the raft. We sat down and looked at the hills that surrounded the lake and at the sail boats with their white sails. When I turned to look at my father again he was gone and I was alone on the raft with Andy.
I woke up expecting it to be night and to be alone in my room but instead there was still light out and I was on the couch in the family room where Andy was watching me.
"Hey, Wad, want to tell the story?"
"Sure, Gofus," he said and soon began running through the living room to the door and back. I thought maybe it's okay, even if parts of the world start to slip away, if you have a son running back and forth with his arms in the air like wings, laughing the whole time until you, too inevitably laugh.