THESE ARE THE FACES OF LUPUS
By A. G. Moore, Westbury, NY
Cover: Nick Pierno www.Nickpierno.com
Editor: Mike Moore
Smashwords Edition
Copyright © 2011 A. G. Moore
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Disclaimer: Nothing in this book is meant to prescribe or endorse any treatment or medication. The opinions offered are those of the author and carry no kind of warranty as to accuracy or effectiveness. No source, website or otherwise, cited in this publication is endorsed by the author
This book is dedicated to my mother, Mary Greiner, and to my brother Everett
Acknowledgments
I thank my husband and my children for supporting me throughout the many edits of this book and throughout my “good” and “bad” days.
I thank my siblings, who love me as I am.
I thank the doctors whose skill and guidance have enabled me to function so well so much of the time, especially Dr. Gary Solomon and Dr. Lisa Bogdonoff.
I thank the members of my writing group: each one of them contributed significantly to this project.
Disclaimer
Nothing I say in this book is meant to suggest or recommend a treatment or remedy for any disease. I am not a doctor; I am a patient. Anyone who is sick, or suspects they might be sick, should see a doctor. What the book does suggest is that it makes a difference which doctor you see. And when you do receive advice, use the same critical faculties you would if you were buying a refrigerator or a new car. Inform yourself. Read everything you can.And it’s usually a good idea to get at least a second opinion.
Keep in mind that any treatment plan, whether good or bad, impacts the patient more than the doctor. Mistakes made will be regretted by the doctor, but the consequences of those mistakes will be born most dramatically by the patient.
TABLE OF CONTENTS
Introduction
Part I Profiles
Introduction to Profiles
Chapter 1 Hannelore Kohl
Chapter 2 Inday Ba
Chapter 3 Seal
Chapter 4 Flannery O'Connor
Chapter 5 Ferdinand Marcos
Chapter 6 Tim Raines
Chapter 7 Barbara Enright
Chapter 8 Ray Walston
Chapter 9 J. Dilla
Chapter 10 Elaine Paige
Chapter 11 Michael Jackson
Chapter 12 A. G. Moore
Part II The Mechanics of Lupus
Chapter 13 Diagnosis
Chapter 14 Physiology
Chapter 15 History
Chapter 16 Overlap Syndrome
Chapter 17 Treatment
Chapter 18 Prednisone
Chapter 19 Causes, Correlations, Associations
Part III Lupus and the Patient
Chapter 20 Photosensitivity
Chapter 21 Finances: Insurance, Social
Security, Disability
Chapter 22 Finding a Doctor
Conclusion
Part IV Reference
Glossary
Laboratory Tests
Appendix
Belly Fat and Stress
Cortisol and Insulin Resistance
Cortisol and Essential Hypertension
Photo Credits
Introduction
This was not an easy book to write. Culling through some of the personal stories was wrenching, though I found many of them, just about all of them, inspiring. While researching Flannery O’Connor’s life I was so affected that I had to take a six month break. Upon completing Inday Ba’s profile I tried, unsuccessfully, to contact her mother. And, after learning about Barbara Enright’s precedent-setting successes, I shamelessly engineered a brief encounter with her at the 2009 World Series of Poker Tournament.
Over the last seventeen years I have read a great deal about lupus--books, medical monographs, online blogs. Some of the material was clinical, some subjective, some simply, heartbreakingly, plaintive. I intend my effort here to have a broader scope than any of these. I aim to be candid and not to disguise unpleasant truths. For example, a recent study suggests that more than 92% of lupus patients experience anxiety.1 This fact appears in a medical journal but is not likely be found in less scholarly publications, which tend to assume an encouraging, even solicitous, tone.
In my experience, selectively presenting, or sugar-coating information does not instill confidence. On the contrary, it leaves patients poorly equipped to participate in their care and to make important decisions. If people want to read up on a disease, then they deserve to understand the facts. It might be reassuring to learn that anxiety is not necessarily a personality flaw, or an indication that a patient is not adjusting well to being ill. Anxiety, they would discover, can be a symptom of lupus. I also think acknowledgment of this would encourage doctors to treat patients holistically, to address anxiety, gastrointestinal problems, arthritis, etc, as part of an organized disease process. When patient and doctor openly exchange information they can operate more cooperatively and successfully.
The first time a rheumatologist said the word “lupus" to me, I was going full steam in a new career and was finishing up the requirements for a masters degree. I was also married and raising two high school age children. There was no room for illness, but illness would not go away. Neither would any doctor say with certainty what it was that was messing up my life. Only once had the word “lupus” been mentioned as a possible explanation.
For more than four years I struggled through remissions and flares. Finally, physically and emotionally depleted, I stopped working. Several months later the lupus diagnosis was pronounced. It would take another ten years, however, for an effective treatment plan to be designed--one that would enable me to lead a somewhat manageable existence.
In all those four years, between the first suspicious symptoms and the eventual certitude of a diagnosis, I was sick. The absence of classification did not make me any less sick.
So many people are ill with this disease, or one like it, and they do not present with the clinical clarity that would induce a doctor to say, “Yes, you have lupus," or “No, you definitely do not have lupus." These people suffer, though no doctor has given their suffering a label. As hard as it is to be ill, it is harder to be ill and yet beyond the pale of medical treatment because nobody can figure out what is wrong with you.
These Are The Faces of Lupus is for everyone: those who have been diagnosed, those who might be, those who are doing research because they don’t feel well and want to know more. The book is also for family, friends and anyone who is simply curious.
My research is responsible, my sources legitimate. I do not attempt a detailed discussion of the biochemical aspects of this disease, though I refer the interested to literature that can examine such issues. There are appendices and glossaries, for people who love definition, as I do.
The reader will not find within this book an extended narrative of my experience with lupus, though I use my experience sometimes to illustrate a point. The personal profiles that are provided are of extraordinary people. I hope I do them justice, for they represent countless others who may not be well-known, but whose lives were touched, sometimes tragically, by a disease called lupus.
Part I
The Profiles
Introduction
It is not known how many people have lupus in the world. At best, only a rough estimate can be made because of the difficulty in diagnosing this chameleon-like illness. Whether the number is one in five hundred, one in five thousand or one in fifty thousand, this statistic represents individuals who deal with the challenges of illness every day of their lives.
As Flannery O’Connor once observed, illness is an isolating condition. The abundance of Internet forums dedicated to different diseases attests to this loneliness. Sick people reach out to others similarly affected. They are comforted by association and they learn by shared experience. The Internet phenomenon prompted me to include in my book profiles of personalities who have coped with lupus. Many of the names I mention will be easily recognized. Some are less well known. Every profile, however, is a story that I find instructive.
Lupus is a chronic disease, one of many autoimmune illnesses. It is not uniquely unpleasant or unfair, although it does have a unique set of symptoms. Everyone gets sick eventually. It is part of the human condition. Learning about lupus, or any chronic disease, has universal applicability. While the profiles in the book are not exactly parables, I hope they serve a similar function. Each person confronting this disease had life, family, ambition. Some lost their lives. Every one dealt with family and ambition differently. Whatever the manner and outcome of their struggle, at the end all shared one thing with each other and with us-their humanity.
Chapter 1
Hannelore Kohl
It was about a quarter to nine in the morning. The pool at the Mirage Hotel opened at 9:00 sharp and my husband wanted to be there at exactly that moment so he could grab a prime chair. He tucked a water-warped potboiler under his arm and positioned a pair of impenetrable sunglasses on his nose, then bade me farewell. I strolled over to the window and looked below for his lanky form to appear on the patio. We always asked for a room with a pool view, so we could connect from a distance, each of us in our place, suiting ourselves with an activity that gave us pleasure.
The deck was not crowded: mornings tend to be quiet in Las Vegas. My husband, tall and square, moved languidly through the rows of chaise lounge and stopped at his preferred station. He stretched out indolently, his already tan skin inviting more unfiltered, cancer-inducing rays. I turned from the window and closed the curtains. My hot coffee had cooled to a comfortable temperature and the butter had melted invitingly on my oversized roll. I unfolded the Las Vegas Review Journal and began to read, headlines first, then local news. On page two, an article about ex-Chancellor Helmut Kohl's wife caught my eye. She had committed suicide. I read on. She was depressed, the report said, because she had been forced by a severe sun allergy to lead a reclusive life in the country. The allergy was not only to sun, but to “bright lights”; exposure to light caused an extremely painful reaction. I put the paper down. It all sounded so familiar.
Some years before, when I was forty-five, a doctor raised the possibility that I might have lupus. Four years later, that possibility became a diagnosis. Many more years went by before a rheumatologist came up with a protocol for controlling my disease. This progression of illness and treatment is not unusual for lupus, a very idiosyncratic disease with a wide array of symptoms. Photosensitivity is just one of lupus’ many clinical aspects, and affects as much as 50% of systemic lupus patients.1 I am part of that 50%.
I cannot tolerate sunlight and am sensitive even to certain types of artificial light. My reaction goes beyond rashes and skin discoloration;with sufficient exposure, it manifests with full-blown systemic inflammation. To complicate matters, I am also allergic to chemical sunscreens. Thus, I have learned to live an odd kind of life, out of the sun and away from direct UV radiation, such as is found in fluorescent lighting. I’ve accumulated a wardrobe of hats in different styles and colors. Most of my summer shirts are long sleeved and can be rolled down against UV exposure should I end up in an inhospitable environment. My husband has become expert at spotting the one table in a restaurant or chair in an airport that isn’t bathed in overhead lighting. And when we go to Las Vegas, he spends mornings at the pool, within view, and I spend that time relaxing in our room--resting, reading and writing.
Maybe Mrs. Kohl didn’t have lupus, but it sure sounds to me as though she did. And it sure sounds as though her disease had a devastating effect on her. She was alone when she died; her “allergy” separated her from her husband and the life she previously enjoyed. I learned later that her “light allergy” started as a reaction to penicillin, and I recalled my own allergy to penicillin, which first expressed as arthritis, and in a subsequent event as hives.
I surveyed the color-coordinated furnishings in my hotel room and savored the taste of my now-cool coffee. I felt a deep sympathy for Hannelore Kohl. Not only was her photosensitivity very possibly related to a systemic illness like lupus, but so, probably, was her depression. Something like 80 % of all lupus patients experience a disturbance in their emotional equilibrium as a direct result of the disease2. I could not help thinking that, with the proper medical and personal support, the outcome might have been very different for Mrs. Kohl.
I appreciated at that moment, as I have many times before, that despite the difficulties I have experienced because of lupus, I am very lucky. My lupus is “mild” and I receive excellent medical care. My husband is loving and supportive. He makes accommodations so that we are able to go away together, and so that I may live a happy, full life. Hannelore Kohl, and untold other patients, have not been so fortunate.
This book is for them. It is from a friend and a peer. I intend the book to be a resource for people seeking information and I would like it also to provide support for those who might not find it elsewhere. Lupus is not an abstract concept--it happens to people (and animals, too, it turns out, like President George H. W. Bush’s dog, Millie).3 Consequently, I have written book not about statistics and laboratory tests (though these elements exist here, especially in part two) but about the way lupus affects lives.
I hope all of us, with lupus or without, will see something of ourselves in the individuals I describe, as I saw myself in the story of Hannelore Kohl.
Chapter 2
Inday Ba
There’s a scene at the beginning of the movie, A Man Who Knew Too Little, in which a prostitute fights with her knife-wielding pimp. Police burst into the room and rescue the woman. We soon learn that the scene is a farce–the prostitute and her pimp are part of a TV audience participation show and the fight sequence is performed repeatedly, with different audience members. The role of the prostitute, Des, lasts for only a few minutes. It is played by a virtual unknown named Inday Ba, an actress who does not remain unknown for long.She hones her craft and in time is offered a contract with the Royal Shakespeare Company. She does not get a chance to fulfill the contract, however. Within days of signing, she falls ill and eventually loses her life to a determined enemy, systemic lupus erythematosus.
Inday Ba (N’Deaye), the daughter of a Senegalese father and Swedish mother, was born on August 10, 1972, in Gothenburg, Sweden.1 When she was an infant her parents divorced and Inday was raised by her mother.2 The impulse to act came early to the child, and endured even through the most ferocious stages of her disease.3
In 1991, at the age of 18, Inday graduated from what was the Swedish equivalent of an American high school4. With an eye to realizing her thespian ambitions, she moved to London and eventually enrolled in the Webber Douglas Academy of Dramatic Arts5. Webber Douglas was a venerable institution with a long list of notable alumni, including: Terence Stamp, Julia Ormond, and Angela Lansbury.
Shortly after graduating from Webber Douglas Inday Ba landed a variety of small roles; her IMDB filmography indicates that she performed professionally 22 times before finally getting a recurring part on the British TV medical drama, Casualty.6 The year was 2002 and it was a momentous time in Inday’s life. Her career was taking off: she met and married her husband; she bought a home; she settled down in Somerset--and she learned she had lupus.By the end of 2002 Inday Ba was admitted to St. Thomas Hospital with acute kidney inflammation.7
Inday Ba continued to work despite her illness. She told no one outside her family about the lupus diagnosis. However, the disease took its toll. Inday said she could not be married with her illness, so she separated from her husband, sold her house, and moved to London.8
On the website established by her mother as a memorial, Inday is described as being very strong willed and motivated. She wanted, apparently, to combat her disease without resorting to more powerful medications than she already was taking. This underestimation of lupus' deadly potential very likely hastened Inday’s death. While the medicines used to treat lupus are dangerous and often have unpleasant side effects, the choice to medicate or not can be a choice between life and death. It is the artful and precise application of powerful medicines, in the hands of skilled practitioners, which can tip the scales in favor of the patient over the disease.
The tragedy of Inday Ba’s death had many authors. Stricken with a vicious form of lupus, she was under medicated and probably suffering from impaired decision-making. During her final crisis, when she was transferred to intensive care, it was determined that lupus was attacking her lungs, kidneys and brain.9
Further evidence of Inday Ba’s mental deterioration can be gleaned from her memorial website which describes a notable transformation that had begun to take place in Inday’s personality. Her mother paints a portrait of an exhausted, anxious young woman who had grave concerns about her future.10Inday’s actions in the period preceding her death seem to confirm this observation. In December of 2005, already concerned about her declining health and feeling her mortality, she decided to travel to Senegal, where her grandmother lived.11The urge to connect with family is understandable–Inday Ba was not close to her father and had never met her grandmother. However, as strong as the impulse to bond might have been, it was clearly dangerous to undertake such a journey while she was evidently ill.
The final causative element in Inday Ba’s premature death is the hardest for me to accept or to explain–medical misadventure.
On January 4, 2005, weeks after she returned from Senegal and one week before her final hospital admission, Inday’s lip swelled. Alarmed, she sought treatment at St. Thomas Hospital. The doctor who saw her decided that her lip was swollen because of an undefined allergic reaction–this despite her history of lupus and associated kidney disease. He took no blood, ran no tests and sent her home.12
One (critical) week after the consult at St. Thomas, Inday Ba experienced severe shoulder and back pain. This time she turned to a chiropractor for help. He diagnosed muscle strain, worked what he believed to be the affected areas, and sent her home.13
The next day, feeling worse, Inday went back to St. Thomas. She was admitted immediately, with pneumonia. Lupus was raging in her body and her kidneys were in trouble. She never recovered from this episode. She spent the next three months in and out of the hospital and ultimately succumbed to the ravages of the disease.14
I first saw the name “Inday Ba” when I was searching through lupus websites, looking for material about well-known people who had the disease. That’s all Inday Ba was to me, a name, material. Then I saw her picture and read her mother’s sorrowful tribute. The swiftness and ferocity of the young woman’s illness was startling, her determination to realize a dream, inspiring.
She was so close, when she died, to receiving the acclaim she had worked for. I went online again–not to look for a name this time, but to find a person. The movie she appeared in early in her career, The Man Who Knew Too Little, was on DVD and selling for about three dollars.
I waited to watch the film until I had time to concentrate. I didn’t know what kind of part Inday Ba had, and I wasn’t sure I’d recognize her. But once the credits rolled, and the action began, there she was, vivid, alive, sweet--the dynamic face her mother posted on the memorial website.
Inday Ba was a natural actress, convincing, beautiful.
Hello, Inday, I thought. Lupus cheated you of the recognition you earned. Well, here I am, and you live on, at least up there on the screen. I’m going to do whatever I can, in my small way, to let others know about you and your brave life.
Chapter 3
Seal
Seal, the international recording star, understands that people react to the noticeable scars on his face. These distinctive marks are mistakenly taken for tribal wounds, a legacy perhaps of some ritual he endured as a child in Africa. But, Seal hastens to explain, the scars are not tribal; they are the result of a disease he has had since he was a teenager--discoid lupus. 1 At a 2008 benefit concert, Seal revealed that he had been suffering from the disease for more than twenty years.
Discoid lupus erythematosus is a disease in which skin lesions form, mostly on the face, neck and scalp. Though Seal has carried the mark of this illness since his youth, he accords it no more importance than he accords any other difficulty he has confronted. He has said that whatever happened in his childhood, as difficult as some of those things were, he has no regrets. All of it, the good and the bad, made him the man that he is today and so all of it was a necessary part of his growth2.
Seal Henry Olusegun Olumide Adeola Samuel, the second of six children, was born on February 16, 1963 in Paddington England. Not long after his birth he was sent to live in a foster home. The interlude with this foster family was apparently the happiest of his childhood. He remembers fondly that he was accepted by the foster parents as though he was their own child3.Unfortunately, the peaceful period came to an end when he was four years old. That is when his biological mother reappeared and took him to live with her4.
After two years she became ill and Seal changed hands once again as he went to live with his natural father and his stepmother. Seal characterizes the years that followed as“horrific”5Not only did the family live in great poverty but they also were constantly in tumult. Seal describes his father as being a violent man, who used whips and fists to enforce order. The father, Seal states, was the product of a home in which he also experienced violence. It was a cycle that was visited on succeeding generations. Understanding this, Seal determined that he would break the cycle and not repeat the mistakes of his forebears. When he left home, Seal explains, he left behind the violence. In order to become the man that he is today, Seal had to stand up to his father and strike out on his own6.
Seal was fifteen years old. He dropped out of school and worked at odd jobs to support himself. Eventually, he returned to school and earned an associate degree in architecture7. When he wasn’t working, or in school, he focused on his true interest: music. He played in pubs, performing anywhere he could, before joining the band, Push8. With Push he traveled through India where he experienced a kind of spiritual awakening9. Evidence of this new insight would appear later in his music. Finally, in 1990, his first big break came when he collaborated on a hit album with music producer Adamski10. The following year Seal produced his own album, and the smash single Crazy was released11.
By 1996 Seal was an international brand.That year the music industry took note of his status by granting him its highest award: the Grammy. Seal received three of these awards: one for Best Male Pop Vocal, one for Record of the Year and one for Song of the Year12.
Although he enjoyed professional success and artistic fulfillment, the part of Seal’s life that brought him most satisfaction was his family. In 2004 he married supermodel, Heidi Klum. Klum was expecting a child from a previous relationship when they married. Upon his marriage, Seal expressed a sense of fulfillment; he stated that with this new family he had finally achieved everything he always dreamed about. Seal adopted Klum’s child, Leni, and the couple went on to have three more children together.
Being a father, for Seal, is the most important job in his life. It’s important to him to do this job right, because he realizes that there are no second chances with his children 13
Seal today is a multimillionaire. He is a respected musician, with fans all over the world. At any point in his life he could have buckled to the challenges he encountered. Perhaps the few years he spent with a loving foster family gave him the personal resources to prevail over hardship. Or, perhaps he was gifted with an innate strength of character and that enabled him to overcome obstacles. Whatever the origin of his drive, however, it is inescapable that he has succeeded where many would have failed. He carried with grace and poise the evidence of disease; overcame a legacy of poverty; defied a childhood filled with violence; and contributed to the world a body of music that enriches and inspires.
Some people are defeated by adversity. Some succeed despite adversity. Seal seems to be one of those rare individuals who grow stronger because of adversity. He once said that his father’s gift to him was to show him, by example, exactly what a father shouldn’t do14.
Seal Henry Olusegun Olumide Adeola Samuel, whom the world knows as Seal, has an illness called lupus; he has transformed what could have been the stigma of disease into a kind of trademark. By any standard, this would be a significant achievement. However, for Seal, it is just one of many accomplishments in the life of a very remarkable man.
Chapter 4
Flannery O'Connor
Flannery O’Connor enjoyed in her lifetime the admiration of some of the most influential writers of her time--this despite the fact that her physical existence was defined, for most of her adult life, by illness.For her, sickness was a place and she described it in a letter to a friend as the only place she had ever been. In the letter she talks about the challenge of being ill as one of isolation. Sickness is a place without company; it is a place in which one must reside alone and in its solitary nature, it is “instructive" 1
Sickness may have had an enduring influence on Flannery O’Connor’s life, but she did not allow it to determine her destiny. Mary Flannery O’Connor (she later dropped the Mary) was born on March 25, 1925 to Edward and Regina O’Connor in Savannah, Georgia2When Flannery was eleven Edward learned he had systemic lupus, a disease that was then shrouded in mystery3. Not until 1949–twelve years later–was a diagnostic tool (presence of LE cells in the blood) for the disease discovered and not until 1950 was an effective treatment (cortisone) available4. As Flannery so characteristically stated, when her father suffered from the disease the only remedy was the one offered by the mortician5.
From 1937 to 1941 the O’Connor family struggled to cope with Edward’s disease; they moved first to Atlanta, where Edward sought work, then to Milledgeville, Ga. On February 1, 1941, Edward died. His death was widely reported as “sudden”, largely because he and his wife had scrupulously concealed his illness6.
An only child, Flannery was strongly affected by her father’s death. Consistent with what would become a lifelong inclination, she used religious symbolism to interpret the loss, comparing God’s grace to a bullet in the side7. Years afterward she described her childhood as one of premature sophistication. She claimed that she was a very old twelve-year old. Only as an adult did she discover the levity that eluded her in her youth8. She demonstrated early in her life a tendency toward the peculiar. Fascinated by chickens, she made clothing for them and at six was filmed teaching a chicken to walk backwards9.
She pursued an MFA at the Iowa Writer’s Workshop, and while there had her story, The Geranium, published10. With the appearance of The Geranium in a prestigious journal (Accent), Flannery’s acceptance into the literary community, and her future, seemed assured: she was shepherded around New York City by Robert Lowell; spent a year in residence at Yaddo (an artists’ retreat); and sojourned with Robert Fitzgerald (a poet) and his family in Connecticut11. 11 She began to imagine for herself a certain kind of life. She wrote, in those early years when a bright future seemed within her grasp, that she could see herself never returning to Georgia and that if her mother did not live there, she probably never would12
In December of 1950, noting a debilitating soreness in her arms and generalized arthritis, she felt she should go home to Georgia for treatment. During the trip her symptoms worsened and by the time she arrived in Milledgeville she was terribly ill. Like her father before her, Flannery O’Connor learned she had lupus13.
Flannery weathered this crisis, but her plans for the future did not survive. Doctors warned that if she was to have a future at all, it would be in Milledgeville under her mother’s care. Regina and Flannery O’Connor moved into a small farm, Andalusia, where Flannery spent the next thirteen years writing and indulging in a few favorite pastimes: raising peafowl, painting,shooting off volumes of correspondence. She directed her letters to friends, fans, literary colleagues and theologians. A significant number of her fans, she wryly admitted, were prison inmates, who identified strongly with the darkly drawn characters in her short stories.
Only occasionally did Flannery leave Andalusia--usually to give a lecture, and once, at her mother’s insistence, to make a pilgrimage to Lourdes14.
Flannery’s illness waxed and waned. From 1955 on she used crutches (steroid use often leads to osteoporosis), but whatever the state of her health, she continued to work. She early established the habit of writing for three hours a day, even when that writing seemed nonproductive15She described the dedicated labor of producing her first novel, Wise Blood. She was at it for five years and when it seemed she was nearly done, lupus struck. The disease not only robbed her of vigor, but it required her to take steroids, which took their own toll. High dose steroid therapy deprived her of sleep and put her in an almost manic state16
Though Flannery’s physical existence was severely limited, her creative drive never diminished. Inspiration for most of her quirky characters came from observing relatives, neighbors and Andalusia’s hired help. But her greatest source of inspiration, one overlooked by many of her more sophisticated readers, was religion. Flannery O’Connor was a committed and philosophically engaged Roman Catholic (Robert Lowell once wrote that he was dismayed by her preoccupation with religion and regarded those who encouraged her in this direction as “fanatics”)17. She stated frankly that her writing served her religious convictions and that the writing could not be properly understood unless approached from this perspective18.
As Flannery neared her thirty-ninth birthday, doctors grew increasingly concerned about a large fibroid tumor, which they believed was causing severe anemia. While they acknowledged that any operation for Flannery would be risky, they decided the tumor had to be removed.
On February 25, 1964, a hysterectomy was performed19. Flannery was infused with cortisone before the procedure in order to combat potential kidney inflammation. The surgery was successful; unfortunately, the preoperative precautions were not. Flannery spent the next six months in and out of hospitals, battling inflammation and infection. Her lupus had flared with a vengeance and Flannery was fighting for her life.
Aware she was not likely to live for very long, Flannery nonetheless continued to work, completing two more stories20. One, Parker’s Back, she composed entirely in her head, only committing the final draft to paper, because she was too sick to sit at her desk. From her bed she also edited galleys of older stories, in preparation for a collection she hoped to release21.
Flannery O’Connor died on August 3, 1964, at the age of thirty-nine22. Seven years later she was awarded the National Book Award in Fiction for the posthumously published The Complete Stories, the same book she had been working on in her last, sickest weeks22. During her brief career Flannery produced thirty-two stories, two novels, three story collections and over a hundred critical essays. Although she said she had always lived in sickness, in the years following her death the opposite has become true. Flannery O’Connor has lived, and will continue to live, virtually everywhere: on college campuses, in European salons, in the minds of people all over the world.
Chapter 5
Ferdinand Marcos
In February of 1986, President Ferdinand Marcos fled the Philippines with his wife, Imelda. When his residence, Malacanang Palace was opened, the opulence of the home became an international scandal. There were, among other personal possessions, 1000 ladies handbags; 508 ball gowns; 3000 thousand pairs of ladies shoes;1 a mural depicting Ferdinand as Adam and Imelda as Eve;2 and-a kidney dialysis machine3. The extravagance of the palace was taken as a testament to the corruption of the Marcos government and the existence of the dialysis machine as proof that Marcos was suffering from a life-threatening illness: systemic lupus erythematosus.
Reconstructing the story of Marcos' life requires separating the truth from an artfully crafted legacy. For example, it is a fact that as a youth Marcos spent four years in prison for murdering his father’s political opponent, Julio Naludenson4. What is not clear, however, is that Marcos actually committed the murder, for the Philippine Supreme Court eventually exonerated him and released him from prison5. It is also a fact that Marcos received commendations after WWII for resisting the Japanese wartime occupation6 What is not clear is that he deserved these commendations: CIA records unsealed years later suggest that perhaps instead of being a hero, Marcos was a collaborator and engaged in black market trading with the Japanese7.
It is a fact that when Marcos left office in 1989 he was a very wealthy man. What is not clear is how he acquired this wealth. It has been suggested by many that the Marcos regime was a kleptocracy, that Marcos, his wife and his cronies enriched themselves at the expense of the Philippine people and economy. However, Mrs. Marcos has steadfastly explained that her husband’s great wealth came from fortuitous gold trades and that he benefited greatly from a rise in the price of gold8.
It is a fact that Benigno Aquino, leader of the Philippine’s strongest opposition party, was assassinated on the tarmac at Manila Airport9. What is not clear is that Marcos ordered the assassination, although Aquino’s widow publicly blamed him for her husband’s death.
Finally, it is a fact that Ferdinand Marcos died on September 28, 1989 of multiple organ failure after a lengthy and debilitating illness10. What is not clear is that he suffered from systemic lupus. His wife and representatives consistently reported, when he was president, that he was vigorous and in good health. However, during his third presidential term he was absent without explanation for long periods. And a palace physician who suggested that he had had a kidney transplant was later found murdered.12 Additionally, when the privacy of Malacanang Palace was breached, not only was a dialysis machine discovered, but also uncovered was a chamber equipped like a small hospital13.
The following biographical information seems to be reliable: Ferdinand Emmanuel Marcos was born on September 11, 1917 in Serrat, the Philippines14. His father, Mariano, was a local politician and was implicated, along with Marcos and two of his brothers, in the murder of Julio Naludansan15. In 1940, all four Marcoses were released from prison16. However, while in prison, Marcos did not waste time--he studied for the Philippine bar exam and passed with an almost perfect score. When this excellent result was challenged, Marcos retook the test orally and performed almost as well17.
In 1954 Marcos met Imelda Romueldez, a singer and beauty contest winner. After an eleven day courtship, the two were married. In honor of their eleven-day whirlwind relationship, Ferdinand gave Imelda an eleven carat ring18.
Marcos' first elective office was in the House of Representatives. He subsequently served in the Senate for three terms. In 1965 he was elected President of the Philippines and held that position until he was forced into exile19.
Some have characterized the Marcos government as a dictatorship. Certainly, Marcos eschewed constitutional restraints. Soon after his election he abolished the nation’s 1937 constitution and dismissed the parliament. He imposed martial law during a time of unrest and kept it in place for seven years, lifting the police regimen only when a visit from Pope John Paul II was imminent20. During his twenty-one year presidency, Marcos managed to plaster his image just about everywhere. His picture appeared on billboards along the road, in the hallways of government buildings and beside blackboards in school classrooms21.
Although he served three presidential terms,questions were raised about the legitimacy of his last two elections. The perception of poll irregularities, a widespread belief that his administration was corrupt, and the Aquino assassination all contributed to the insurgency which forced Marcos from the country.
Opposition to Marcos was not unanimous. He had his supporters, not only the so-called cronies, but also those who feared communism and social disorder. These supporters point to his muscular response to the communist threat and his strict anti-crime measures. Also, he was a firm ally of the U.S, which reciprocated his friendship almost until the very end.
On their flight into exile, Ferdinand and Imelda traveled courtesy of the U.S. Air Force22 They left the Philippines as a very wealthy couple, though no one was ever been able to tally exactly how much they were worth. Most estimates ranged in the billions23. Some of their wealth they managed to bring with them on the two planes that transported them to the United States. On one plane Marcos assembled an entourage of family and close associates. On the second plane he stuffed as much of his treasure as he could physically fit24.
When news of the second treasure-laden plane got out, there was a public outcry and a formal protest from Corazon Aquino, the new President of the Philippines. The contents of that second plane were eventually confiscated by the U.S. and returned to the Philippines. The Aquino government continued its efforts to retrieve wealth appropriated by Marcos. In response to one suit, the Swiss government turned over 684 million (US) dollars that had been deposited in foreign accounts26.
Ferdinand Marcos spent his three-year exile in Hawaii, much of that time in the hospital. Because of his illness he did not have to answer charges of fraud and embezzlement that were pending against him in U.S. courts. His death came after a long hospital confinement, almost all of it in intensive care. Although details of the illness were never revealed by Marcos’ family, the public assumption has been that he died of complications from lupus27.
The Aquino government would not allow Imelda Marcos to bring her husband’s remains to the Philippines until 1992, when the family received permission to bury Marcos in his home province28His mummified corpse is on display there today, open for public viewing in a refrigerated crypt29.
In recent years the Marcos family has enjoyed a kind of political resurgence--two of the children have served in congress, numerous civil suits by the Philippine government to recover assets have been dismissed or defeated and Imelda, though eighty years old, expressed an interest in running for office31 . As a final act of Marcos brand rehabilitation, in 2007 Imelda sponsored the publication of seven books on the Marcos presidency32.
She explains her sponsorship of these books; she feels that it is time for the stories she has to tell to come out. She wants to add her own chapter to the history of the Marcos presidency as it currently exists33.
Chapter 6
Tim Raines
Sometimes lupus appears with such swift intensity that it presents an immediate and critical danger to life. Such was the case with Tim Raines, major league baseball player, and Montreal Expos Hall of Famer.
It was 1999. Raines had been having an off year; mid-season he went on the disabled list and four days later underwent a kidney biopsy. His doctors were investigating the cause for a sudden fifteen-pound weight gain and blood pressure that was sky high. The biopsy revealed that Raines was suffering from acute kidney inflammation. His nephrologist determined, after further testing, that the inflammation was due to systemic lupus. Raines was hospitalized and given several rounds of high dose medication1.
However, Raines was down, not out. When asked what the side effects of the medical regimen were likely to be, all he had to say was that he expected to get “better”2.
Tim Raines was born on September16. 1959 in Sanford, Florida. In 1979 he married his high school sweetheart, Virginia Hilton. He began his professional baseball career when he was drafted by the Expos in 1977 and he played his first major league game with the Expos in 1979. He was early recognized as an aggressive player and over his career held records or near records for his base-stealing exploits3.
During his career he played for a number of teams--the Yankees, the White Sox, the Oakland Athletics, the Orioles and, most significantly, the Expos. It was with the Expos that he received the most recognition, garnering several MVP awards, as well as entry into the Expos Hall of Fame4
In 1982 Raines went into drug rehab; he acknowledged that he had been playing baseball while under the influence of cocaine and had actually carried drugs on him while on the field. In 1985 he and several other major league players testified (with immunity) in the trial of an accused drug distributor Curtis Strong5.
Today Raines has retired from major league baseball and works as manager for the Newark Bears, a minor league team in New Jersey. He has remarried and lives with his new wife in Arizona6.
Raines is perennially listed as a Cooperstown Hall of Fame candidate, but he has fallen short of election each year. There are some who believe that he will never be granted this honor, not necessarily because they don’t see him as a Hall of Fame caliber player, but because the shadow of those years when he abused drugs hangs fatally over his Hall of Fame prospects7.
Some Tim Raines statistics:
*Only one of three players in major league baseball to steal a base in each of four decades.
*Second father and son pair (played with his son on October 4, 2001) to play on same team in major league game.
*Holds Expos/Washington Nationals Franchise record for steals, triples, singles walks and runs.
*Fourth highest number of stolen runs in major league history8.
Chapter 7
Barbara Enright
Block 16 in Glitter Gulch, at the beginning of the twentieth century, was home to brothels and gambling parlors. Local residents recall that prostitutes in scanty attire sat on the brothel porches and waited for their clients to call1. Glitter Gulch and Block 16were both testaments to the fact that through much of Las Vegas' history, it at least partly owed its existence to the patronage of men. Men who worked the gold and silver mines in the 1800's; men who built Hoover Dam in the 1930's.
By the time Benny Binion built the Horseshoe Casino on a plot that abutted Block 16, seedy gaming parlors and brothels had been bulldozed and converted to parking lots. Not that Benny would have objected to the brothels, or any other income-producing enterprise. Legend has it that he had fled to Vegas from Dallas back in ’46 because the Chicago mob and inhospitable local politicians muscled him out of town. There are some who claim that Benny left behind a legacy of multiple murders, bootlegging and organized gambling rackets2.
When Benny Binion set up business in Glitter Gulch, Vegas was a pretty open town, but not open enough for Benny. He didn’t like the $50 limits that were traditionally placed on wagers, so he raised the limit to $500, and then he removed the limit altogether (on first bets). Binion’s Horseshoe Casino became the first establishment to offer a no limit game. It was also the first casino to put down carpet (instead of sawdust) on its floors3.