Are You Okay? Yes, I'm Okay
July sun was tenacious, a hot, muggy day in South Carolina. The concrete parking lot reflected sunlight and heat as my cab came to its final stop in front of Hilton Head Hospital. The sight of the building looming over the trees always brought ambivalent feelings of hope and fear. The puncturing of flesh never fails to startle, just as the invasion of plastic tubes and steel needles never fails to leave my mind quivering. Pain is exhausting simply because I never get used to it.
First stop was Admissions, then up the elevator to my room. It was 1991 and treatment number five. Middle of July, midday heat, halfway through the scheduled immunomodulatory treatments. As usual, I signed a document making sure I knew that Medenica Clinic was a research facility and that I was being given treatment, the efficacy of which had yet to be proven.
I was here because of one moment in 1983 when I was given the Heptavax-B vaccine by my employer. No one told me about the vaccine’s risks. I never questioned the vaccine’s safety. My son was eleven, and I’d been a single parent for nine and a half years. “Be part of the solution instead of part of the problem,” my mother had always told me, so when I became an evening supervisor of the hospital where I’d worked for eight years, I hoped to make a difference. I listened as nurses told me that they wanted flex-time and a nursery in the hospital for their children and grants for continuing education. When a new director of nursing wanted to make the staff all registered nurses, I grieved along with my fellow nurses as licensed practical nurses were let go amid a storm of protests and tears. The nursing director explained that it was not part of my job to conduct meetings where nurses could air their complaints.
“You are part of the administration now,” she said.
“Aren’t hospitals here to help nurses help patients?” I asked.
All around me, nurses became silent. “I’m afraid I’ll lose my job if I complain,” they said.
Two years earlier, I’d earned my graduate degree in creative writing after many nights of coming home from work and writing long into the night. Life was busy but rewarding. Summer heat was receding into one of the most beautiful Colorado autumns in memory when I received the second dose of the Heptavax-B vaccine, a sting of needle under skin, one moment that forever changed my life.
Aspens in the foothills near my home had their brightness knobs turned up to their highest levels; the view from my window was a mosaic of stained-glass reds, oranges, yellows, browns. October 28, 1983. After a night of intense pain and fever, I called in sick and pulled sheets up over my shaking body. The shift the night before was the last one I’d ever work as a registered nurse.
Now I was on Hilton Head Island, the resort where the Clintons trekked for their Renaissance Weekend, their elitist, wonkish, schmooze immortalized in The New York Times as “the saturnalia of soul-searching by the sea,” an island of Studerexpensive hotels and gourmet restaurants. That this was where my hope for medical treatment resided was the most sadistic of ironies. Once again, I knew that God had a strange sense of humor.
I’d replayed this scenario many times in the eight years since my illness began: I sat in a doctor’s office, nervously waiting for him to probe various parts of my body and history not generally open to public scrutiny. As I sat on the exam table, my worry filled the small room, air heavy with awareness that decisions would be made by yet another doctor, usually male, his white coat starched with authority. I agreed to reveal my age, weight, current medications, past and present symptoms, stripped myself of reticence along with my slacks and sweater, and answered his questions as part of an implicit agreement: Patient tells all; doctor cures all. Tomorrow would be the day my team of doctors would have the answers. What had begun as innocently as a lingering flu had exploded into a full-blown mystery disease, the ever-changing blue in a kaleidoscope through which the rest of my life must be viewed.
This was immunomodulatory therapy number five in a series of ten treatments. Eight years worth of cycling through prednisone and cytoxin and anti-malarial medications, more traditional treatments for lupus back home in Colorado, had not improved my physical condition. I was having lunch with a friend when, all of a sudden, I couldn’t speak. I don’t know how she got me to her car. My “transient ischemic attack,” the first act before a stroke finale, was what made my doctors decide that my best hope for remaining alive were immunomodulatory treatments, which consisted of large doses of interferon and solumedrol and having my blood cleansed by a plasmapheresis machine.
The immunologist who was treating me in Hilton Head was from Yugoslavia and resembled an exhausted lounge act more than a high-profile physician. Dr. Medenica wore a red-plaid sport jacket and a white shirt unbuttoned at the collar. His nose was long and curved, and, although his body fit his tall frame proportionately, his face was jowly. He was going bald, and his hair ringed his head like a monk’s. His words were wrapped in a heavy Slavic accent. If a movie were made of his life, Karl Malden would star.
I waited in a small room to get blood drawn and to give a urine sample. The young lab tech applied a rubber tourniquet and missed my vein twice. “Try this arm,” I suggested, noting the sweat gathering on his forehead. Three was a charmed number. Dark vermilion flowed up the tube, and my arm received its badge of honor. Urine, unlike blood, was bountiful. On to the EKG lab. Then it was time for what I dreaded most, the insertion of the subclavian catheter. Every month, I closed my eyes, tried to relax, and took a few slow, rhythmic breaths as I felt pressure under my clavicle and then a pop as the catheter was threaded up my subclavian vein. The portable chest X-ray checked to make sure the catheter wasn’t lodged in my lung by mistake.
“We’re ready for you, Connie,” Patti said, as she smoothed her blue scrubs with her small hands. “What’s your musical taste today?”
“Enya,” I said. Patti helped me pass the four hours I was hooked up to the plasmapheresis machine by telling jokes. Laughter, an analgesic releasing endorphins more potent than morphine. Laughter, the best antidote to machines. But the treatments were no joke. It was a strange feeling to watch my blood circling outside my body through plastic coils, mine but not mine. From all the years I worked as a registered nurse, I remembered how fresh blood, ripped from body parts, smelled, an aroma that went straight to some deep primitive center of the cortex. Once the subclavian catheter was in place, the procedure was painless, but always there was the nagging worry in the back of my mind: Do this nurse and this technician know what they’re doing? My apprehension was not exactly allayed by the fact that there was a high turnover in staffing at the clinic. It was difficult for hospital workers to find housing on this expensive resort island.
“I’ve got a good joke for you, Connie,” Patti said, as she settled in next to my bed. Carefully she gauged the speed with which blood left my body and passed through the machine that separated my red blood cells and plasma and scrubbed it clean of antigens, the foreign substances that caused my autoimmune illness—lupus.
“A woman went into an expensive restaurant and asked the busy waiter for a Hilton Head turkey. ‘Yes, ma’am, I’ll bring it right out,’ he said. He went into the kitchen and told the chef a lady had ordered a Hilton Head turkey. The waiter brought the order out on a platter. The woman took the lid off the platter, looked at the bird, and stuck two fingers in its rear end. ‘No, no, take it back. This is not a Hilton Head turkey!’ she exclaimed.
‘Oh, I’m sorry, ma’am, I’ll bring one right away.’ He hurriedly brought the platter back to the kitchen and said,___‘Gee, Chef, this woman really knows her birds. She only wants a Hilton Head turkey.’
‘Okay, that’s what she’ll get,’ the chef muttered. The waiter brought it into the woman and set the platter in front of her. She took off the lid and inserted two fingers in the rear end of the bird. ‘Ah yes,’ she said. ‘Now THIS is a Hilton Head turkey.’
‘Good, I’m glad to hear it,’ the relieved waiter said.
‘You have an accent, where are you from?’ the woman asked.
‘Why don’t YOU tell me,’ the waiter said, as he turned away and bent over.”
We finished laughing, and Patti switched my IV bottles. Eyes closed, I concentrated on listening to Enya and imagining sitting by Grand Lake, my favorite place in the world. I was having a picnic with Chris, as our dogs, Brittainy and Bambi, took turns chasing the ball. I imagined that a million filters were siphoning off the immune complexes that clogged my veins. I was sinking down into lake water only to rise reborn. I was kissing a lover I’d not yet met.
“Dr. Medenica wants to try this new medication, Gamma-Gard,” Patti said, as she hung a new bottle. Within minutes, I felt my trachea closing off. “Patti, help me,” I whispered, as I sat straight up in bed and yanked off the earphones. All of my fight-or-flight responses kicked in, my sympathetic nervous system firing away like marines responding to attack. Stasis, that moment of holding air in, absolute standstill, then my neck felt like it was taking on the shape of a blowfish. Patti took one look at me and turned off the medicine and stuck an oxygen cannula in my nose.
“Call Medenica,” Patti yelled to the tech in the next room.
“So that’s what a drug reaction feels like,” I whispered. “I never knew they were so scary.”
“Don’t let anyone give you Gamma-Gard again.”
“No kidding.” My breathing returned to normal. Dr. Medenica arrived and listened to my chest, while Patti relayed my tale of woe. My life depended on the skill of this nurse. One miscalculation, one oversight, and it would all be over.
Assessment skills were the unique, singular skill of a registered nurse, the vigilant mother at the bedside. The physician was the absent father. Sometimes just being able to breathe is a poem.
According to an ancient Egyptian creation story, the creator’s first act was to pluck a reed, split its tip, and write the world into existence. The Australian aborigines described the creator as first emerging from the formless void and singing the world into existence—words put to music. Words, the smallest unit of language, translated into objects, feelings, memories, fantasies. The treeness of trees. Middle C on a violin. A sleeping dog. Bestowing names gave power, word magic.
Diagnosis, part of medicine’s love for big words and ritual, was necessary in order to prescribe treatment for my illness and hopefully to provide a cure. Early in 1984, I was thrown into a game of diagnostic roulette. Isolate the symptom. Devise a compensation mechanism for all the life changes. After a year of diagnostic procedures and being referred to more than twelve doctors, I still wandered in an alien land of semantics. Nothing definitive to report. No malignancy. No chromosomal abnormality. As new symptoms arose—blood in urine, high blood pressure, pain in arms and legs, intermittent fever, rashes, run-over-by-a-truck fatigue—my doctor sent me to see an oncologist, a rheumatologist, a nephrologist, more than twelve specialists in all. My lymph nodes were biopsied, then my arteries, and then a lump in my breast. All of them confirmed that my symptoms were real, but no one was able to attach a diagnosis to my constellation of complaints. An open kidney biopsy, done in January 1984, revealed “proliferative glomerulopathy, diffuse, generalized.”
“I think you have polyarteritis nodosa,” my nephrologist said. “Medical literature is full of hepatitis B as the cause of polyarteritis nodosa and other diseases of the blood vessels. Have you ever had hepatitis B?”
“No. But I did receive the hepatitis B vaccine.” That information seemed irrelevant to him. I became used to hearing, “This is not the usual clinical picture. Could be lymphoma or lupus erythematosus or henoch-schonlein purpura.” Not your everyday, garden variety, movie-of-the-week type of diagnoses.
Three-forty a.m. and I was wide awake because of a new roommate. It was the winter of 1984 and my fourth day at Presbyterian Hospital in Denver. The old lady in the next bed rattled the side rails, her mouth pulled up like a purse string, with only a faint whistle escaping. From the look of her, she was not long for this world, but she kept trying to rise to the surface, only to slide once again down to a murky level.
The next morning, I was scheduled for a muscle biopsy and other tests and then planned to be discharged. When I returned to my room in mid-afternoon, the bed next to mine was vacant and held fresh linen. The nurse who helped me into bed also held out a paper for me to sign.
“What’s this?” I asked, but already knew what she wanted me to sign. “Orders for Resuscitative Measures.”
“We need to know what you want done if . . . it’s standard procedure . . . we ask all patients to sign one,” she stammered. I knew all too well what being resuscitated meant. How many times, in the twenty years I worked as a registered nurse, had I brought pink back to skin that had been grey.
Intubation. Cardioversion. Vasopressors. Anti-arrhythmic drugs. Defibrillation. And if all else failed, there was always a pacemaker and a respirator.
When it became clear to my employer that I wouldn’t be able to return to my nursing supervisor position, I received letters from the Director of Nursing that it was incumbent upon me to apply for Social Security Disability. In March 1984, I was proclaimed “totally physically disabled” by my doctors but still didn’t have a definitive medical diagnosis. Meanwhile, the world trundled on. The Mets won the World Series. Gorbachev cleaned out the Kremlin. The Berlin Wall came tumbling down. Neighbors and friends got dressed every morning and left for work or class, and I made the rounds of oncologist, rheumatologist, nephrologist.
Being a patient meant being awakened at four in the morning for blood pressure checks and hanging modesty up in the closet, along with my jeans, and being palpated and poked with needles. Being a patient meant lab techs and nurses paraded through my room on their schedule instead of mine. Being a patient was praying for Divine compassion but never knowing if God was listening. Being a patient was a fast freefall in the dark, the shock of impermanence, the panic of not knowing where the bottom lay.
I, like all nurses, suffered from denial, a belief that illness could not happen to me. My generation of nurses had grown up with antibiotics and vaccines and blind faith that most diseases could be treated. “Science has made modern medicine safe,” was the covert lesson I was taught in nurse’s training, along with the muscles of the hand. Safety was an agreed upon myth; otherwise, who would fill the nursing trenches? During the twenty years I worked as a registered nurse, I saw how nurses had become the unhappy spouses in their marriage to medicine. The marriage wasn’t working, but no one knew what to do to make it better. Patients were the latchkey children of this volatile union, the innocents who often experienced the inadequacy of the health care safety net.
I began a second career as a sleuth, reading medical textbooks about vaccines—the holy grail, the consummate wafer of disease prevention. Vaccines were made from bacteria or viruses and were in either live or killed preparations. Live viruses were attenuated, or weakened, by using one of several methods: filtering a virus strain through animal cells fifty or more times to reduce potency. A second form of immunization was done with killed vaccines in which the organisms were inactivated by the use of radiation, heat or chemicals. The Heptavax-B vaccine, which I received in 1983, was of the killed-preparation variety. The vaccine, laden with formaldehyde and mercury (thimerosal) used as preservatives, were a twentieth century version of MacBeth’s witches’ brew: eye of newt and toe of frog.
As I lay at home on the couch, air was the bronze-gold of a Rembrandt landscape. Red and brown leaves peeked out from behind green cottonwoods. Yellow jackets looped, while ants scurried up and down the sidewalk, bearing their sweet burden. Chuang Tzu, who helped craft the tenets of Taoism in ancient China over two millennia ago, suggested that the most profound forms of communication go beyond words. “Words exist because of meaning; once you’ve got the meaning, you can forget the words.” Solitude became my comforting partner.
“Come with me to Louisville. I want to look at an antique lamp,” I’d said to my ten-year-old son two years before everything changed. We’d moved to a home near Boulder that I’d bought the year I became supervisor at the hospital.
“Do I have to?” Chris didn’t share my enthusiasm for antiques. We had no furniture when we arrived in Boulder in 1973 and had lived in a furnished apartment until I gradually was able to buy furniture. Slowly over the years, I’d furnished our home with walnut antiques—a walnut table, six chairs, a walnut secretary, several bookcases to hold my growing library. The love of old wood and the stories that antiques told were a legacy from my stepfather.
I stopped the car in front of a house in Louisville. There was a sign on the lawn, “Golden Retriever puppies for sale.” Chris looked at the sign, his eyes growing huge, and then he looked at me. “Merry Christmas, sweetheart. You can pick out your puppy.” From the litter of ten pups, one of them gamboled into my son’s arms and into our hearts.
“This is the best Christmas ever, Mom,” Chris said, as he played with Brittainy under the Christmas tree. Brittainy was Chris’ companion and bed partner. Her cold nose had kissed him good night. Her teeth had chewed everything in sight, including transforming poplar saplings at the back of our yard into nubbins.
Now, two years later, there was no excuse for my negligence. I’d been at home between hospitalizations, when it became clear that Brittainy was going to become a mother. Having her spayed had been on my “to-do” list, but buying Chris a winter coat had to be my priority. Brittainy’s pregnancy was the result of a one-night stand with our neighbor’s dashing black Labrador-Great Dane mix who, in a fit of passion, had leapt over our fence as if it were invisible. Animals’ motivations are so pure, no phone calls not returned, no coquettish glances. He wanted her, she wanted him. So simple. Unfortunately, there was no “morning-after” pill for dogs.
Brittainy’s labor began around noon on a Saturday. Chris watched anxiously while Brittainy panted and produced her offspring, which turned into a long process. One brown head appeared. An hour later, a slimy second. A half-hour later, one tiny black bullet-head, confirming paternity as clearly as any blood test.
“Time for bed, Chris,” I yelled from the top of the stairs.
“Let me sleep here tonight.” Brittainy’s head lay in Chris’ lap as she panted. “I’ll get my sleeping bag.”
“Will you be all right?”
“Sure,” he said, as he snuggled down.
In the morning, there were two more brown puppies and one more black one, seven in all. Chris was the proud, sleep-deprived papa. Brittainy was trying to catch a nap with a pup pulling at each nipple. It was late afternoon when I persuaded Chris that he should go out to play. “Brittainy needs her rest,” I said, gently guiding him up the stairs.
When we checked on our nursery the next morning, two of the brown puppies were dead. Brittainy took turns licking one, then the other, as if trying to awaken them. Chris started to cry, “I shouldn’t have left her.” And I whipped myself for not taking Brittainy to the vet when her labor dragged on. Maybe I should have moved the pups to another area; maybe Brittainy accidentally smothered them.
It was immediately clear that Brittainy was grieving. Whenever I tried to remove the two dead puppies, she bared her teeth. She’d never so much as growled at me before. I watched as she nuzzled her dead pups, dangled her nipples near their still mouths, as if coaxing them to take hold.
The next day, Chris and I buried the pups in the backyard and held a funeral. I recited The Lord’s Prayer while Chris wiped away tears. My son learned about birth and death all in the same weekend.
“Are you going to die, too, Mama?” he asked, pain in his voice because grief was still a strange language.___“Every time you go into the hospital, I wonder if you’ll come home.”
“The doctors have to do a lot of tests so they know what kind of medicine to give me. Don’t worry, I’m very stubborn. I’m going to be around a long, long time.”
As always when I needed guidance, I turned to the poets for truth. The poet Rainier Maria Rilke’s answer to uncertainty was, “Be patient toward all that is unsolved in your heart, and try to love the questions themselves, like locked rooms and like books that are written in a very foreign tongue. Do not seek the answers, which cannot be given you, because you would not be able to live them. Live the questions now. Perhaps you will then gradually, without noticing it, live along some distant day into the answer.”
Fall, 1986. I was ushered into the exam room at National Jewish Hospital in Denver, a cubicle as monochromatic and windowless as a jail cell. The young immunologist examined me calmly, as if I were his only patient all afternoon. The thick chart that my primary physician had sent him lay open on the desk.
“I think you have a vasculitic condition caused by the Heptavax-B vaccine you received back in 1983,” the immunologist said slowly. “I’ve been treating a man who has experienced a similar chronology of events.”
“I’ve wondered about that, because I became so ill within two days of the second dose.”
“That’s when hypersensitivity symptoms often occur. It’s like a serum sickness that refuses to go away.”
“What kind of treatment do you recommend?” I was on the edge of my seat in anticipation of ending this nightmare of disability.
“Your doctors have already tried prednisone, anti-malarial drugs, and cytoxin. There’s one other thing we can do if you get worse,” he said. “Plasmapheresis. But I hope that won’t be necessary. All we can do is treat symptoms as they arise,” he said, as he took my hand, a gesture of sympathy. Symptoms, the language the body speaks when under fire, can be a source of valuable information or a prison sentence. After eight years of total disability, I finally received a diagnosis: “systemic lupus erythematosus, systemic vasculitis, glomerulonephritis induced by the hepatitis vaccine.” My body was constantly fighting the foreign substance introduced by the vaccine. Like the Trojan Horse, the enemy was inside. Lupus strikes patients when they are in the prime of life, ninety percent of whom are women.
The mystic Julian of Norwich wrote that severe illness brought on “revelations, the wondrous appearance of the Lord Himself.” She said that pain produced contradictory responses, “fury at the force that was a disturbing distraction and at another time the rare opportunity to see everything more vividly, with a clarity I could only wonder at, in which the details of my present life were intensified and acutely delineated. Pain is a form of information, a language all its own.”
Dr. Shiovitz washed his hands after examining me. “I was hoping that the prednisone and cytoxin would help you feel better. So far it doesn’t seem to be making much difference. But I’ve been a doctor long enough to know that malignant tumors can mysteriously disappear. So-called incurable patients recover, and we doctors, if we’re honest, credit it to an act of God. Or, if we’re not honest, we claim that we had the magical cure. All any of us can really do is to accept health with a bewildered sense of gratitude.”
“It would be easy to go to bed and stay there,” I said.
“I’m a firm believer in the power of old-fashioned anger working through each one of us,” my doctor said.___“Martin Luther King would never have started the Civil Rights Movement if he hadn’t gotten really angry about not being served at a lunch counter. Van Gogh wouldn’t have painted his masterpieces if he hadn’t failed as a minister of the Gospel among the coal miners.”
“I’m going to do some research to see if there’s any link between vaccines and chronic illnesses.”
“I’d be interested in reading what you find. I’ll see you through this,” he said.
Anger gave me the energy to roll out of bed in the morning, to get my son off to school, to work at my word processor. Anger gave me the energy to spend many hours researching medical journal articles, documenting side effects and long-term disabilities caused by vaccines. Anger was the life force that helped me submit a Freedom of Information request to the Food and Drug Administration about any research linking Heptavax-B vaccine to chronic illnesses. Six months later, I received a printout that said there were seven other documented cases of systemic vasculitis following inoculation with Heptavax-B vaccine. No names, only numbers. Nine months later, a huge carton arrived in the mail, containing computer printouts from the Vaccine Adverse Reporting System (VAERS). With a sinking heart, I read all the vascular problems listed—heart attacks, strokes, perforated bowels—as well as more mild symptoms such as rashes, muscular pain, and fever.
“Number 333383: A fifty-eight-year-old male physician who developed myalgia, arthralgia, fatigue, serous otitis media, transient loss of vision in one eye and multiple peripheral neuropathies following the third injection of Heptavax-B. He is currently being treated with cytoxin and prednisone for a polyarterititis-like illness.”
In response to a letter I wrote to the manufacturer of the vaccine, I received the following response: “Your letter of inquiry dated May 16, 1988 concerning Heptavax-B has been forwarded to my attention. Since Heptavax-B has been on the market, we have received occasional reports of vasculitis following vaccinations. We would be interested in receiving additional information concerning any patient you may be treating who has such a diagnosis.”
My first introduction to the dark side of medicine had been many years before, when I researched my father’s lobotomy, trying to find out why that surgery had been permitted to continue for so many years. Now I was once again face-to-face with medical intrigue: Cloak-and-dagger discovery of new drugs. One health maintenance organization stealing patients from another. The political intrigue of American Medical Association lobbyists. The duel for international prestige. The race to cure AIDS or cancer or Alzheimer’s. Dumping mental patients in the next county or state so someone else’s taxes will pick up the tab.
Back in 1983, no clinical trials of new drugs were done on women before they were approved by the FDA. “They are too difficult and expensive to study,” the pharmaceutical companies said. They even tested estrogen therapy on men, even used male rats. Men’s bodies have always been taken as the norm. It was also men who were the CEOs of the major pharmaceutical companies and the chief immunologists of university research departments who were paid by the pharmaceutical companies to do clinical trials. Men were the paid medical experts who presented the clinical trials to the Food and Drug Administration for their approval. Danger, warning, at risk were the red flags the health care behemoth waved to keep troops moving in lockstep. Right, left, right, left. And there I stood in line like a good soldier, my arm bared for the bullet.
Three a.m. often found me awake with only my fellow travelers in the land of insomnia to keep me company. “Sleep,” Vladimir Nabokov wrote, “is the most moronic fraternity in the world, with the heaviest dues and crudest rituals.” The diaries of Franz Kafka were full of entries such as, “Slept. Awoke. Slept. Awoke. Miserable life. Let me only have rest at night—childish complaint,” which attested to his lifelong battle with insomnia. Thomas Alva Edison, a strong-willed, high-energy person, tried to sleep only four or five hours a night so that he would have time to work on his creative projects. “Most people overeat 100% and oversleep 100%
. . . That extra 100% makes them unhealthy and inefficient.” Edison hoped that his light bulb would help people trim off that excess 100%. Swedish film director, Ingmar Bergman, said, “For the past fourteen years I can barely manage four hours sleep a night. I’ve succeeded in exorcising my insomnia thanks to books and music. I’d imagine that Tolstoy and Mozart, among others, have literally saved my life.”
It was usually money worries that kept me wide awake. My every humiliation and shortcoming paraded around in my brain. Disability pay was not enough to cover our bills. When I saw an ad in the paper that a meditation group wanted to rent a room for five hours a week, I called, and a very kind voice was on the other end of the phone.
One night a month later, my writing group was sitting around my table, sharing poetry and tea and laughter, when a loud Ommmm levitated up the basement stairs.
“What was that?” Sarah asked.
“Just some people in my basement,” I said, turning red.
“Connie has a church in her basement,” Morgan laughed.
“Could be worse things,” Sarah said.
The Self-Realization Fellowship, with their pictures of Mahatma Gandhi and Martin Luther King and Jesus, brought Studermuch needed income and gentle karma to my small home.
Over the next nine years, there were two women who rented one of our bedrooms so that I could pay the mortgage. “Are you okay with this, Chris?” I asked. He was entering his teens, and I knew how he loved his privacy. He worked after school in a supermarket in order to have money for clothes and for movies with his friends.
“If it means keeping the house, let’s do it,” he said.
Marjorie was soft-spoken and wafer thin and a graduate of Naropa, the local Buddhist college. She’d been born with a harelip, which gave her mouth a perpetual sneer, which she compensated for by smiling a lot. She had a degree in psychology and furnished her room with a futon and a schefflera and a lamp that gave off a pink glow.
“Stagnant energy causes illness,” she said, when I told her that I had lupus. “Let me open your chakras.” I’d tried acupuncture and Chinese herbs, so why not open my chakras. Life with Marjorie in the house was peaceful; we shared books and often meals. Three months into our landlord-tenant-budding-friendship relationship, Marjorie shared one of her dreams with me.
“My breast is crying,” she said. She showed me a drawing of her breast with dark shadows.
“Does your breast hurt?”
“I have a sore,” she said, as if she were talking about a rainstorm.
“Do you want to show me? I used to be a nurse.”
When she took off her blouse and bra, a piece of gauze covered a weeping hole in her right breast. Cancer, my mind cried. “How long has it looked like this?”
“Maybe three months.”
“Do you have a doctor?”
“No. I’ve been doing visualizations and prayer.”
“Will you see my doctor? I think this is serious.”
I drove her to my doctor’s office and from there to a surgeon’s office, who scheduled Marjorie for a biopsy the next day. A few days later, she told me the biopsy showed cancer.
“What are you going to do? Have a mastectomy? Chemo?”
“I’m going to continue with what I’ve been doing, visualizations and prayer,” Marjorie said. Nothing I said could persuade her otherwise. She was self-employed and had no health insurance. Money was a big part of her decision. But what I saw in her was resignation at her fate rather than peaceful acceptance. She’d given in, given up, been beaten down long before she moved into my home. I wanted to give her a transfusion of anger and problem-solving and determination to fight for her life. Unfortunately, the will to live must be a self-transfusion, like the new machines that recycle spilled blood and give it back to its owner. She stayed two more months and then moved in with a friend. A year later, I read her obituary in the newspaper.
If I wasn’t a nurse anymore, who was I? My illness made me speak out in a way that I never had before. The worst had happened. What did I have to lose? In her essay, “On Being Ill,” Virginia Woolf spoke of the sense of freedom illness conferred. “There is, let us confess, a childish outspokenness in illness, things are said, trusts blurted out, which the cautious respectability of health conceals . . . With responsibility shelved and reason in abeyance—for who is going to exact criticism from an invalid or sound sense from the bedridden?—other tastes assert themselves; sudden, fitful, intense.”
Buddhists maintain that illness is an opportunity for enlightenment, for burning off negative karma. Because illness is so intensely personal, there are truths as different as each person’s eye color or DNA or dreams. “Why has this happened to me?” is the universal question of the ill. Like a pile of leaves on a forest floor, bodies break down, fall apart. Termites, ticks, fungi, viruses, agents of decay are always at work in the timberline forest of the body. Hippocrates, the Father of Medicine, said illness was cured by “coction” or boiling. One of the Navajo words for disease translates as “fragmentation and reassemblage.” Medicine keeps stumbling along in search of a new paradigm, a golden mean that can somehow bridge the Cartesian split between mental and physical worlds.
All of a sudden, my son was a six-foot-four, sixteen-year-old high school student and embarrassed if I hugged him in public. Nervously I went through the mother-son rite of passage of teaching Chris how to drive. We spent hours in the car together, while I urged him to please let his foot off the gas and to please use the turn signal.
“Remember to breathe,” I said, a reminder to myself as well. Sometimes when I looked at my six-foot-four son, I still saw the little boy who had sobbed over a burst balloon, a large red one he’d received on his fourth birthday. The six-year-old who had learned how to ride his bike as I ran alongside. The trick was knowing when to let go.
Chris hummed while he made popcorn in the microwave, his humming a mindless tune, the melody unrecognizable, a melodic cul-de-sac going nowhere. His hum was more a reflex action, like talking in his sleep. He wasn’t aware of it. I loved it because it was a barefoot-in-the-grass, sneaking-out-the-back-door kind of hum. Not like my hum, full of worry about biopsy reports and medical treatments and paying the mortgage. Chris was at the age when the only medicine he needed were prunes, and nothing was more exciting than a basketball game or the recess bell.
His hum brought memories of his pockets full of rocks and bottle caps and mischief. A shoe box with airholes that served as a hospital for an injured grasshopper. Dirty knees and dirty hands and long legs covered with scabs. Sometimes he slipped up and called me Mama, but mostly he thought he was too old for that. But the day he got his driver’s license, he gave me a hug, and he blew me a kiss from across the street before he went for his first drive alone.
Armed with what I believed was irrefutable evidence of a link between my illness and the Heptavax-B vaccine, I decided to pursue a Workmen’s Compensation claim. If a play were written about vaccine-related illness, the three acts would be: Act I: This couldn’t happen, a nurse becoming ill from a vaccine that was supposed to protect her. Act II: The threat of shunning, if she dared break silence. Act III: Speaking out and letting the chips fall where they may.
“Just calling to wish you luck,” Pat said. “Dave and I are praying for you.”
“I’m just going to speak the truth. The letters from my doctors should be all that I need to prove what happened. But Dr. Shiovitz thought they might bring up our father’s mental hospital incarceration, so he had me see a psychologist to be tested.”
“After all this time? That’s terrible.”
“No, he was just trying to cover all the arguments they might bring up. The psychologist said I’m coping with the illness well. How many people can say they have a medical document proving they’re not crazy!”
“I could have told them that.”
“If I haven’t gone crazy by now, I never will, dear sister. I love you.”
The day of my Workmen’s Compensation Hearing, June 28, 1991, was so hot that tiny black bubbles of tar ballooned on the parking lot. I stepped through the heavy doors of the courthouse into total blackness. Concentric rows of seats and shiny oak rails and the judge’s bench gradually came into focus. Everything was on the line with this lawsuit: financial solvency, personal integrity, and continued health care. I had letters from three of my physicians stating their belief that my illness was caused by the Heptavax-B vaccine I’d received while working as a registered nurse. My medical records were a six-inch high tome. Not a best-seller or an easy read. More a mystery than a romance novel.
As I sat in the shelter of my lawyer’s large frame, I listened and prayed. Back and forth, arguments and accusations flew. The hearing hopped from minutiae (Which lot number was the vaccine from?) to the big picture (That vaccine Ms. Studer received was pulled off the market in 1986). As my lawyer, my town crier, my Socrates spoke up for my rights, I understood that American jurisprudence was mastering millions of rules and then applying them. Competing value systems. Strategies of legal argument. Persuasion. Nothing could be taken for granted. Nothing was proven just because it was strongly felt. The judge would not be swayed by an emotional declaration of faith. I was awarded back pay, as well as a monthly stipend and health care coverage. Naive woman that I am, I thought I was all done with hearings and judges, but there were many more to come. Throughout the six years of hearings, one question reverberated in my brain: Who are these people? Did the Colorado Compensation Authority deliberately recruit their policy-makers and naysayers of treatment from a small subset of Americans who had no experience with illness? Having to prove my injuries over and over to a group of bureaucrats, in spite of my physicians' documentation, felt like further injury. Winning my Workmen's Compensation suit was a sobering joy, like when a war ends and you tally up the casualties. Even though my former employer had no witnesses testify against me, it was difficult to separate this cold bureaucratic process from the hospital where I'd worked. It was about numbers and money and politics and egos and turf. It wasn't about me, a human being, a valued ten-year employee. How much is a body worth?
A month later, I was on a Greyhound bus for a two-day one-night trip from Denver to Savannah for immunomodulatory treatment number ten. Even though I’d won a Workmen’s Compensation suit six months before, I still hadn’t seen one cent of my back pay. When I asked my lawyer, he said, “The judge has to sign the papers.” How long could it take for a judge to sign his name to five pieces of paper? Six months and counting.
Raindrops on the roof of the bus beat out their staccato language. I paid admission to this darkened sideshow, was forced to look at what should not be seen. A stick-thin woman with a red dress and purple sweater and black fishnet stockings tried to pick up a black man, who was trying to mind his own business. The girl in the seat next to me asked, “Are we there yet?” I smiled and said, “No, soon.”
In the chill morning, the driver smoked and talked to a shirtless man half hidden by the open door. Soon could mean before noon or within a year or two. Soon could mean never. Soon meant a hospital bed waited for me ahead. The narrow road swayed past, as the world awakened to miles of cotton. The girl beside me once again slept. I envied an old woman sitting on her porch, her swing a cushion of stability. The future was rushing past too fast to grab hold. I nodded on the aisle, invisible. My watch lost time to the keening of tires.
Riding the bus through the south could best be described as Hard Copy meets Hee-Haw. The National Enquirer on wheels. Scandals. Love triangles. Who was broke and who was kissing whom. The bus lurched over railroad tracks, past a broom and mop factory, along an orange-roped-off construction area. Behind me swirled Dolly Parton jokes, beauty tips, casserole recipes, a litany of scandals about southern politicians. I marveled how southerners said two words when they could say one. They watered their flowers with hose pipe. Something happened each and every day. They named their sons Charlie Ray and their daughters Camellia Ann. A person suffered from yellow jaundice.
Nine fifteen a.m. I was having a breakfast burrito and coffee in the bus depot. A black man came through the door from the street, looked around, and walked up to a black man sitting at a table. He placed a greenback in front of the man.
“Are you okay?” the man asked.
“I’m okay,” the other man said.
“Great. I’m going to get a beer.” The two men left the depot together, and I made up a story in my mind about what I’d just heard. The man was repaying his friend for a debt. The money on the table was a signal that a drug deal had just gone down. The man had just lost his wife, and his friend has given him money for her funeral. Something in their lives made these men need beer before ten in the morning.
It was time to get back on the bus. The bus left without the men whose lives had touched mine in a desolate bus terminal. And once again I was grateful that, in these times that drove men away from inner contemplation, just as a forest fire drove wild animals from their lairs, I had the inner cave of writing where I could attempt to make sense of what I saw, where I was safe.
Are you okay? Yes, I’m okay.
The bus pulled into Savannah, Georgia at midnight. The only mode of transportation from Savannah to Hilton Head Island was by taxi. By the look of surprise on the driver’s face, I knew he didn’t get many fares to Hilton Head Island that originated from the bus station. On the thirty minute trip, he told me, in an accent so thick you could slather it like butter on bread, that he was recently divorced and a single father of a wayward fourteen year old daughter.
“I work twelve-hour shifts and just got out of the hospital last week because I got stabbed in the back. But that guy didn’t have no luck,” he said, with obvious satisfaction. “I put him in his coffin.”
I really didn’t care to investigate this line of conversation further, but it was obvious that my driver needed to talk, and so I listened. A guy had tried to rob him. In a low monotone, the driver explained that there’d been a marked increase in crime, especially in the area around the bus station, especially at night. Wonderful. He certainly knew how to put a stranger at ease.
I arrived at the emergency room of Hilton Head Hospital about one a.m. They had a bed waiting. Actually, Room 220 was more like a suite, with its mauve-green-beige plaid cushions on a white wicker couch, glass-topped coffee table, two lamp tables with teal green lamps, and huge picture windows. Edna, the faithful night nurse, greeted me with a hug. After ten months of treatments, I was one of the regulars. We’d shared life stories. She’d held me when I cried.
Morning light brought towering pine trees and a blue South Carolina flag, with its white palmetto and white crescent moon insignias, waving outside my window. The usual rituals of consent form and subclavian insertion and fluoroscopy for catheter placement progressed smoothly. I knew the drill by heart. I was a veteran, a pro. The CVP catheter went smoothly into my left subclavian vein. Onward to the plasmapheresis room for the EKG monitor, the blood pressure checks, the usual routine.
Patti appeared with a Polaroid camera. “Dr. Medenica would like me to take a picture of you for a brochure he’s having made about the plasmapheresis treatments. Is that okay with you?”
“Great. Now I’m a poster child for plasmapheresis,” I groaned. “Do I get royalties?” Big laugh all around. They took 2,500 cc, ninety one percent of my blood volume, out of my body and passed it through the machine, which separated plasma from white and red blood cells, filtered out the antigens, then sent it back into my body with new plasma. Plasmapheresis, that magenta circle, rolling into nowhere, so far from the end and so far from the beginning, like life—so hard to control. My prayer was that these treatments would bring a truce between my body and the foreign invader, allowing my body to cease fire and proclaim armistice, to enjoy lasting peace.
“They’re going to do a Utilization Review,” my lawyer said, during a long-distance phone call as I was finishing up treatment number ten. “They say that Dr. Medenica’s treatment is experimental, but actually what they mean is that it’s too expensive. They don’t want to pay his bills.” To the administrative judges, I was a certain percent of a whole person, price still to be determined, worth X percent of what I once was.
“The plasmapheresis has stopped the progress of the lupus. I was headed for a stroke before Dr. Medenica started treating me,” I said. “Can they stop my treatments?”
“Yes, I’m afraid so.”
The day of the Utilization Review, the judge ruled from the bench that Dr. Medenica would be allowed to continue as my treating physician. “Ms. Studer had received eight-plus years of ‘traditional treatment’ without benefit before she went to Medenica Clinic,” he said. Lawyers for Workmen’s Compensation immediately appealed his decision.
June 1995. My case was argued before the Colorado Supreme Court. My lawyer was given fifteen minutes in which to present an oral argument stating the reasons Dr. Medenica should remain my treating physician. Six months later, the decision came down: the Colorado Compensation Authority would no longer pay for plasmapheresis treatments.
Twelve years after I became totally physically disabled, I filed a report with the Vaccine Adverse Reporting System about my Heptavax-B related illness. Finally, my story was one of the statistics gathering dust somewhere in the basement of the Food and Drug Administration. I was determined that, although my father’s lobotomy so many years before had never been recorded, my story would be heard.