Brain tumor. I first remember hearing of it twenty years ago when my parents whispered at the dinner table that a popular neighborhood boy who was very tall had a brain tumor. From that point on, I associated a brain tumor with being tall and popular.
My next contact was when I was 15 and beginning to feel curious symptoms. My parents took me to a brain specialist in New York City who charged $100 and all I remember him doing was watching me walk back and forth for five minutes. He said I was OK. My parents were relieved. I was unhappy. My displeasure was a combination of wanting a tangible disease and cure for my daily headaches and nausea and wanting to be tall and popular.
My symptoms continued. The headaches, nausea and weakness would emerge daily for two or three months a year. At 21, giant hives accompanied the other symptoms. Over the ensuing years, I periodically saw other specialists. Twice they found mononucleosis, but most of the time they told my family and me, in relatively hushed tones, that it was psychosomatic. I didn’t like that. I didn’t want people thinking I was crazy.
Living under the onus of having a psychosomatic ailment, I compensated by presenting a picture of myself as being in the peak of health. But at the age of 28, during a two-month sick spree, I no longer had the energy to keep up the charade. I woke up one morning, called in sick to the office, and lay down on the living room couch. At that point I decided to call the ambulance and get an I.V. at the hospital. I didn’t want to make a big deal out of it. Then I realized that I couldn’t even sit up. I waited from 10:00 a.m. to 7:00 p.m. for a housemate to come home. I was scared. I had never felt this weak before. I was soon wheeled into the emergency room.
I was ashamed to be in the emergency room with my psychosomatic ailment when, in cordoned-off booths all around me, old women were wailing. I told the resident that this problem was caused by unknown emotional turmoil and if he would be so kind as to give me an I.V. solution or two, I would be on my way. He managed a tolerant smile. Feeding my desire to leave was my parents’ planned visit the next day. I feared that the hospital ambience would trap us in a child-parent interaction instead of the adult-adult level I wanted.
I stayed overnight in a room adjacent to the emergency room called the Host Room. I dreamt of tapeworms. In the morning, I was en by a group of doctors, all with identifying name tags that said “Medicine.” The leader told me that my blood tests showed severe chemical imbalances. He suggested that, since the root of my problem was previously shown to be psychosomatic and my present health was nearing the norm of a concentration camp, I admit myself to the psychiatric ward I said “No.” We negotiated and compromised. They would send a psychiatrist to see me. The psychiatrist told me I was OK and could go home.
At this point my parents arrived from New York. As they drove me back to my house, I felt progressively weaker. I kept telling them I felt OK. I did not want to go back to the hospital. If they wanted to put me on the psych ward last time, they were not to be trusted.
As my mother returned from buying groceries at the nearby country store, I acknowledged to myself that I was still sick. I told my parents to call, the hospital to tell them I was returning. My body was shaking on the drive back. As I was aware of surrendering myself to whatever lay ahead, the words “leap of faith” swam around in my mind. As we neared the hospital, I leaned my head on my mother’s shoulder. I don’t remember ever having done that before.
During my second visit to the emergency room, a college baseball player was getting his broken leg looked at. His coach was with him, reminding him that it didn’t really hurt, that when he was in college he had injuries that were a lot worse. The student kept repeating, “Yes sir, yes sir, it doesn’t hurt.” A little ways down from me, a young girl who had taken an overdose of pills was screaming, “Don’t pump my stomach.”
A couple of hours later, I was taken to a ward upstairs. Different doctors asked me the same questions for another couple of hours and at 3 a.m., they told me to go to sleep. The nurse tied a tongue depressor at the head of the bed and put protective coverings on the bed rails. “Seizure precaution,” she said. Oh, swell! During that first night my doctor injected a solution into my I.V. to reduce the water level in my body. I woke up three times that night having to urinate like I never urinated before. I came close to filling the 1100 cc bottle each time. As the I.V. line limited movements, I asked the nurse how to pee in the bottle without soaking my bed and myself. She said huffily, “You figure it out.”
I awoke in the morning to the “team.” Thirteen people, all in lab coats, said “good morning” simultaneously. My doctor told me that there was a problem in my blood chemistry and my pain from the headaches may have adversely affected the functioning of the pituitary. She mentioned a number of tests they would perform.
As I fully awakened, I began to explore my area of the hospital. I had the distinct impression that I was admitted to the gerontology ward. I could not find anyone that looked younger than 96. The nurses got the old men to do what they wanted (the simple things, eat and void) by promising to marry them. If the men were constipated, the nurses would threaten to break off the engagement. The women in white called the men a variety of names: Sweet Meat, Brown Sugar, White Sugar, Honey Bunch and Sugar Pie were the most common. I was called Paul, however.
The first week in the hospital they did a number of exploratory tests, gaining little new information. I felt like a visitor, as I started feeling stronger. I no longer identified with being sick. I was restless to go home and expected to be released each morning. I began keeping my own accounts of intakes and outputs and helped the nurses with other patients. One wardmate thought I was his son, and although he was in restraints for regularly inappropriate behavior, he would occasionally saunter into my room and try to take off his I.V. and bleed into my waste basket.
The nurses got the old men to do what they wanted (the simplest things, eat and void) by promising to marry them. If the men were constipated, the nurses would threaten to break off the engagement.
The tests were showing some definite endocrine system malfunction. On Monday, I underwent a brain scan which I understood to be a routine part of the test package. My doctor told me that she would tell me the results of the scan later that day. I watched the Dallas-Washington football game that night. An unusual game, 9-5 Washington. At midnight, the medical student working with my doctor came into my room. She apologized for not coming earlier and said that the “team” was busy all day. I asked what the results were. She said that she was not empowered to tell me, that the team would tell me in the morning. I asked her if it was bad. She said she couldn’t say. She looked sad. I knew it wasn’t good.
In the morning, my doctor told me that I had a pituitary tumor and that they recommended surgery. My reaction was numbness. I wanted to by myself. I asked my doctor if I could leave the hospital for a few hours. She consented. I walked around the university campus where the hospital is located. I was conscious of my hospital wrist band and how that made my life different from the people walking by me. I went to the library and sat in an isolated carrel. I felt very much alone. As I walked back to the hospital, I felt vulnerable on the street. I hurried my steps, looking forward to the protective concern of the hospital.
My attitude changed that day. I felt strong. I also felt, however, that if I were going to get through this I would need a lot of support. I called friends, asking them to with me. I came more receptive to the hospital staff as I realized their importance to me. During the next few days, I was beseiged by visitors. As I felt loved by others, I gained a deeper inner strength. I was ready for the surgery.
The last test was the arteriogram. I was well prepared and, except for an initial surprise when the technician shaved my pubic area, I felt in control. The machine made a noise when the dye was injected that reminded me of the sound in the Walter Mitty movie when he entered fantasy land. The pain lasted eight seconds each time the dye was released. The first three seconds the pain increased, then it peaked at the fourth and fifth seconds and subsided through the next three. Once I had mastered that pattern, I could ride it out.
That afternoon, while some friends and I were singing “Old Man River” loudly, the team of neurosurgeons came into my room with the report that the arteriogram showed no complications, that I was free to leave, and that the surgery would scheduled in three and a half weeks on Halloween. I would have liked to do it sooner and I told the doctors I felt ready for it then. As it was not an emergency it could not be scheduled until October 31, however. The doctors explained that they would attempt a relatively new procedure in which they would enter through the nose crossing the sphenoid sinus. They explained that this was less risky than opening the cranium. The next day I left the hospital.
My life was full the next three weeks. I felt more alive than ever before. Time spent with friends was poignant. Excited at the prospect of being fully healthy for the first time in thirteen years, I was filled with gratitude for the opportunity to live without pain after having been given the chance to know pain. People I didn't know told me they were praying or me. Friends from out of state were planning to drive 2,000 miles to be with me for the surgery.
There was only one time I felt afraid. During a routine check-up, I asked the resident neurosurgeon to show me a diagram of exactly where the tumor was located. He first came across a picture of a pituitary-tumored patient on the operating table. I felt nauseous at the sight of the myriad of tubes and I felt frightened at the prospect of choking on the nasogastric tube. When I got home that afternoon, I brought firewood into the house, giving myself a splinter. I felt irritated at the discomfort. I thought of the much greater discomfort ahead and questioned if I was strong enough to handle it.
I was apprehensive about my return to the hospital. After three weeks at home, I expected a jolt to my system. I was wrong. As friends accompanied me to the admitting office and then to the neurosurgery unit, I experienced the warmth and excitement of a gala reunion. I had absorbed so much love during the interim period that I could fan it toward each person I met and still retain plenty for myself. People visited me that entire day and evening. The next day, Monday, was the last day before the surgery. I had told my family and friends that I would like that day alone to prepare myself emotionally and spiritually. I had envisioned that I would need that time to summon my inner resources. They were already summoned, however. I fell asleep during the innocuous tomagrams.
That night, Mary, nurse from the Surgical Intensive Care Unit, gave me a tour of the SICU, and told me what to expect when I awakened from the anesthesia. As she glided through the checklist of topics, I could see that she was enjoying herself. I felt reassured by her ease. The only upsetting news was that I would keep an indwelling Foley catheter at least one day after the surgery. I gulped. I didn’t want my friends to see me with a catheter.
Later that night the anesthesiologist inserted the I.V. that would monitor my heart. As they retracted the line, placing it in my chest, the nurse held my hand firmly. I felt strengthened by her being there. I could feel myself changing; I was giving up my stance of being self-contained and now letting people take care of me.
When the I.V. was in place and I was alone again, I felt lonely. An older man down the hall, who had attracted my attention the day before, motioned to me. I had noticed his neatly-wrapped turban-like bandage and the pride with which he carried himself. He invited me to a party in his room. His name was either Jim or Bill. Whichever name was his, I mistakenly called him the other one. It was an unusual party; he and I were the only guests and the food consisted of the cookies his grandchild baked for him and the two cakes he ordered from the nurses’ station. We watched the Rams play the Falcons on Monday Night Football as he, recovering from an arterial bypass operation, assured me that there was nothing to either the surgery or recovery. The nurses would periodically wander into the room and tell me it was time for me to go to sleep. I cajoled them into letting me watch the end of the game. I prayed for the game to never end. Bill or Jim was leaving the next day but promised to visit me in the intensive care unit.
I slept surprisingly well. I woke up early and watched intently as the sun peeked over the horizon. I slowly began my preparations. I had some extra time to write in my journal and rereading it now, I am struck by the last sentence, written in large print, “THEY’VE CALLED. . . .” I felt that I had done all I could do to prepare myself.
As I entered the holding room by the O.R., I was struck by how funny these medical people looked in their blue and green head coverings. The woman next to me was having her stomach shrunk and she consented to join me in a stanza of “Amazing Grace.” We laughed.
My last presurgery memory was meeting the anesthesiologist in the operating room. My next memory was being wheeled into the SICU. I asked the nurse where I was. “ICU.” “Is it all over?” “Yes.” “Can I do it again?”
I then vaguely remember seeing Jim or Bill standing over my bed simulating an Arab. The next 24 hours were a blur. My parents and friends were allowed to visit for short stretches and I relished their stays. The division between reality and imagination disappeared that day for me. I could imagine myself as a baby and the nurse as my mother and I eagerly awaited her attention. I wanted to tell my nurse that I loved her but I couldn’t decide whether that was appropriate, so I didn’t. I liked being totally dependent. Surprise, surprise.
As I gradually became more conscious, I was curious about the pulse and blood pressure monitors over my bed. After three hours of practice I could pick any reasonable number for either my pulse or blood pressure and tune my body to that number using the monitor as a gauge. I would show that trick as soon as a visitor arrived.
I experienced general aches and pains during this period but my only intense discomfort was when the doctor took the gauze packing out of my nose. After two days in SICU, I had mixed feelings about returning to the ward. I felt sad that I would lose the mothering and I was excited at the prospect of being free from the I.V.’s and monitors.
I remember the next five days as a gala celebration. I was given some wine and after I had received permission to imbibe, I shared a cup with each visitor. My new roommates comprised a large part of my life at that point. One man, Willy, was from out of state and had suffered some broken bones in a car accident. He was in no hurry to return home. He enjoyed flirting with the nurses, visitors and patients. He cajoled a visitor of another patient to wash his underwear. Willy was frequently successful in getting a young nurse to bathe him, although he was capable of doing it himself.
The other man, Mr. Bellows, was an inspiration. He had been paralyzed for two and a half years and in the hospital for almost all of that time for tests. He seemed truly grateful for all that was in his life. He saw himself as rich, as he contemplated the love of his family and his relationship with God.
On Sunday morning, Willy led the eighth-floor congregation to the downstairs chapel. He was not normally a churchgoer, but Willy, sensing the opportunity to spiritually commune with an unattached woman, could be flexible.
I remember well my last day in the hospital. The team (whom I no longer considered an intrusion, but whom I now warmly welcomed) in their morning rounds said that I could go home today as soon as the doctor took the splints out of my nose. I felt numb when they told me. I didn’t want to leave. The hospital was my womb. I didn’t want to leave it 28 years ago and I felt similarly this time. One night nurse, Jane, I particularly dreaded leaving. She would wake me every two hours for medication — by leaning over my bed with her head a foot from mine and gently shaking my shoulder, repeating “Paul, Paul,” ever so quietly. My fantasy each time was that I was injured in the Civil War and that this dedicated nun was nursing me back to health. When I told Jane my fantasy, she blushed.
I waited eight hours for the resident with his surgical scissors and vial of morphine, sitting in the corridor with my newly acquired autoharp, alternately strumming, and mulling over the whole experience. I began to know a piece of the gratitude that Mr. Bellows expressed. I felt blessed. I talked at length with the Chaplain about it. I talked with my parents, affirming our relationships. They let go to some extent of their vision of me as a child who could not manage well without their parenting. My father confided to me that they wanted desperately for me to have the operation performed in New York where “all the finest doctors were.” He said that they decided that it would be better for me “to die on the operating table” than to have the decision wrested from me. Inasmuch as I fight hard to retain my independence from my parents, I was deeply touched.
For reasons other than my sanity, I allowed myself to be committed to the state mental hospital in Morganton, N.C. The first couple of days consisted of learning how to survive in an open ward with 25 to 30 other males. People that had privileges or who were considered harmless were allowed to go on an outing. The second day I was there, we went to a state park that was more like an oversized roadside park, but instead of a place to walk a dog, there was a place to walk mental patients. We unloaded from a state bus and took a circular path through the woods. Every 100 yards or so were different type trees with speakers attached to them. If you pushed a button on the tree, the tree would talk.
“Hello, I am a Walnut Tree. Don’t you like my bark?”
After the third morning I asked an attendant whom I had grown to trust a little when I would see a doctor. The attendant spoke to the nurse. On the afternoon of the third day I met with the doctor.
He was in his early 50’s and immediately reminded me of an umpire in an industrial league softball game. And I could also see the invisible scoreboard on the wall in back of him: “Rigsby - 0; Broughton Mental Hospital - 7.”
I told doctor so-and-so that I’d feel a little more comfortable and at ease with myself if I had a mild sedative to calm me down during the course of my stay.
“Of course, Mr. Rigsby. No problem. Where did you say you were from?”
The next morning after breakfast, at 7:31 a.m., I went to the nurse’s station to take pills along with everyone else on the ward floor. Everyone in the hospital took a pill or two at 7:31 a.m. And those of us considered weird also got a shot of thorazine.
I noticed the drug beginning to affect me early in the afternoon. By the time the weekly recreational softball game took place after supper, I truly understood what it was like to be a second base. One of the youthful attendants would hit grounders and line drives to the infield. The infield consisted of 11 patients standing around smoking cigarettes asking why they couldn’t sit down. The attendant would knock the hell out of the ball, then yell “catch.” I’d look up and wonder who was going to get hit. In the course of the “game” the softball would hit someone and the attendant would get hysterical. Batting practice was even more fun. The ball would be thrown from 18 or 20 feet to home plate. A second after the ball landed in the catcher’s mitt, an umpire-attendant would scream, swing, and crack up.
The wooden bleachers were half filled with patients staring at the sky or falling on the ground. I kept on playing second base.
After the game was over, I had 15 minutes of unsupervised time. I got to use one of the two pay phones for patients by giving the person spaced out in the phone booth a pack of cigarettes.
I called my mother and stepfather in Brevard, N.C., about a three-hour drive from Morganton. I talked to my mother for several minutes but she could understand little of what I was saying. The left side of my body was paralyzed or numb, and the left side of my mouth wouldn’t move.
. . . we went to a state park that was more like an oversized roadside park, but instead of a place to walk a dog, this was a place to walk mental patients.
I finally reached my stepfather by repeating a few words over and over. Walter said that he and my mother would be down to visit on the next day. I’ll never forget screaming and crying into the phone receiver until Walter somehow convinced me that he and my mother would be at the hospital the next day without fail.
The next day after lunch and lunchtime pills, an attendant showed my mother into the card and checker room off the ward floor.
At first my mother thought I was putting her on by talking funny and walking like a robot, but when she realized it was for real, she had me released into her and my stepfather’s custody in less than two hours.
We left the hospital with several different bottles of pills the doctor had prescribed over the phone to the ward nurse. My parents also promised the doctor that I would check back with the Transylvania Mental Health Center as soon as possible and not to worry about my speech impediment.
Around ten that evening the muscles in my face stopped contracting and I was able to concentrate on simple things for 10 to 15 minutes at a time, though it was a full two weeks before I stopped twitching no apparent reason.
It happens every year: when the weather is crisp and electric, and strangers look up out of their woolen mufflers and growl at each other, kindred victims of the season’s sleet (or ice, or dead batteries), I come down with the flu. There’s a different strain to catch each year, bearing the name of such exotic places as Hong Kong and Russia. One wonders how the bugs manage to travel so far and why each new variety makes you feel just as lousy as the previous ones.
So here I am again, drinking herb teas, taking aspirin, getting plenty of rest and vitamin C, and noting that none of this seems to be doing any good. The disease is determined to run its course, ignoring all of my efforts to divert it. I often wonder what would happen if I just let nature and all of her nasty microorganisms take their course. Probably nothing different: same cough, same discomforts, but I think I enjoy feeling I’d be worse off were it not for the remedies with which I’m battling it. It always seems cruelly ironic that Medical Science has discovered cures for some forms of cancer, yet is just as ineffecive in preventing and treating colds and flu as it was when I was a child.
The first time I ever wanted to die was when I had the flu: I was in the third grade. Oblivion seemed wonderful compared to the misery I was experiencing. I remember waking up in a fever as my father came in to give me some medicine. I burst into tears because I wasn’t in heaven yet.
These days, I always figure that there’s some cosmic message being communicated to me through my illness. It may come at a time when I need to slow down, or change direction, perhaps step back from life to gain some perspective. One thing I always notice is that I come out of it all with a renewed appreciation of being healthy. For a while, just the absence of aches and fever is truly exhilarating.
Flu is a social disease, a lot less fun to catch than the others labeled so, but social still. The frequency of my own bouts with it has declined sharply since I stopped teaching school and reassumed a proper social distance from everyone else. A lot of unnecessary guilt and fear are associated with Communicable Diseases. I feel ambivalent about telling friends not to come over because I’m sick. On the one hand, I’d love to see a human face after all the fever-demons dancing in front of my eyes, but I’d hate to give them this thing. Some tell me I’m less contagious after I’ve already got the disease and come to visit anyway. (These make me feel like a hypochondriac.) Others won’t come near me for months afterward. (These I classify as hypochondriacs.)
I wonder how many visionaries and prophets got their start via the flu?
And the karma involved absolutely boggles the imagination. I remember chuckling to myself when I overheard two guys talking at length about their bouts with the flu: comparing their symptoms, how high their temperatures ran, relapses, etc. I was thinking, “I’m glad I’M not so careless/dumb/unlucky as to catch it. . . . Been a long time since I was sick. . . .” Then Zap! Two days later I got sick. (I won’t belabor the moral point.) How could I catch it? Did those guys give it to me, wafted through the air? Or was it the fellow who came in yesterday with a red nose . . . Didn’t we use the same computer terminal? An inevitable social pathology develops after you’ve recovered from the flu. You find you’re a bit slow with the handshakes, choosy with the kisses, and you definitely think twice before you eat the other half of a friend’s sandwich.
Strange things happen to you when you come down with the flu: your perceptions undergo bizarre transformations. All of your senses are stripped of their normal functioning abilities. You experience a loss of hearing, a lowering of your normal vocal range (if not a total obliteration of such), your ears become less acute, and the senses of taste and smell are similarly withheld. Sometimes you even pick a few new modes of perceptions, if you don’t watch out. I wonder how many visionaries and prophets got their start via the flu?
Fever is one of the most disconcerting aspects of the disease. It feels like you’re caught between frequencies on a radio dial: a lot of spacy fading in and out of sounds, and a lot of static. Merely trying to stand up and walk a few steps can be a frightening experience. Your head reels around a few times, you begin to lose confidence in your wobbling knees, and the slightest cool draft practically knocks you over. I usually end up hugging my arms around myself to stop shivering and take a few more slow dizzying steps toward my destination (convinced that I’ve aged a good 50 years). Then if I’m headed any place more complicated than the bathroom, I will have forgotten why I went by the time I get there.
Flu-times have become the watermarks on the endless roll of paper of my life, and sometimes downright blotches. I find myself dating things by “the year I had the flu on my birthday,” or “the time I caught the flu in France” rather than by numbers. To me, these experiences are like James Joyce’s epiphanies, illuminating the surrounding days of health and normalcy with a rare insight and understanding. If I can manage to ignore much of the negativity and actually use the healing energy that my body is pumping out in double doses, it is possible to see the flu as a renewing of my spirit. The wonderful feeling of strength and health after an illness is a “high” in itself. Yet there are moments when I’ve been burning with fever, and the aches and sniffles are just about to do me in, when I feel far from enlightenment. One look in the mirror at my puffy face, red nose, stringy hair and the comical layers of clothing I’m shivering in, and I can’t help but laugh at the absurdity of it all.