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It is springtime in 1967. I am three years old and I have juvenile rheumatoid arthritis. Doctors in my small town of Opelousas, Louisiana can't diagnose my illness but they speculate that it is indeed JRA. My parents are devastated and the doctors tell them that they have done everything they possibly can to help me and prayers won't hurt. My older sister is called into my hospital room to tell me goodbye because the doctors don't expect me to live. They can't control my fevers....
It is springtime in 1967. I am three years old and I have juvenile rheumatoid arthritis. Doctors in my small town of Opelousas, Louisiana can't diagnose my illness but they speculate that it is indeed JRA. My parents are devastated and the doctors tell them that they have done everything they possibly can to help me and prayers won't hurt. My older sister is called into my hospital room to tell me goodbye because the doctors don't expect me to live. They can't control my fevers.
You will be taken on a journey of heartbreak and triumph as you witness this little girl's personal lifelong battle with arthritis.
On top of the rich historic celebration all Americans share, Mr. And Mrs. Eddie John Guilbeaux of Opelousas, Louisiana, conceived and delivered an emotional connection to their young family's 1963 Fourth of July. On that patriotic day, their second child, Suzanne Beth, was born. She arrived a healthy little girl with cafe au lait skin, just like their precocious first child, Judy. That second child is me. Everyone calls me Beth.
Evelyn Joyce and Eddie John were hopeful and determined people. They envisioned the brightest of all possible futures for their daughters, as well as for the two sons that arrived a few short years later.
And why not have hope? They were a terrific couple, widely respected and admired in town. Young, well educated, independent, highly focused on their work as educators, grounded in their spiritual beliefs, and aided by strong extended families that were willing to extend support during any times of crisis. The odds were definitely in Evelyn and Eddie's favor.
But odds can be tricky, and luck is something that shifts too much to be a reliable foundation. I used to hear that someone who trusts in luck might ride to the casino in a $4,000 Chevy, then ride back home in a $250,000 Greyhound. Odds are not the foundation upon which to build anything of substance in life. Even at the temples built for her worship in Las Vegas and Atlantic City, Lady Luck is a pretty slippery character.
In the small towns and close-knit communities of south Louisiana, everyone knows everyone else, and there is at least one of everything: One movie theater, one hospital, one burger stand, and one good-working set of rules to live by. The people of Opelousas liked to keep things simple and predictable. What I mean is, my parents grew up as childhood friends, classmates from elementary school through high school. From the stories told in our family, I believe that it was love at first sight for Dad. Both were excellent students, and the teachers adored them. Eddie John was quite a handsome young man and Evelyn Joyce was simply gorgeous with long flowing hair, rich brown skin, a perfectly shaped body, with brains and talent to match, or even exceed, her physical charms. She was a wonderful singer, and he couldn't sing a lick, but a kindly high school music teacher put them next to each other in the choir. She could so plainly see the devotion in Eddie John's young eyes.
After high school, college distanced them for a time. He was off to Texas College, while she went to Southern University, completing a four-year program with honors in an astonishing two-and-a-half years. But fate sealed their destiny as husband and wife. When she was about to begin a career in elementary education, Eddie John could not bear the thought of another man having designs on his childhood sweetheart. So he proposed. Thus, a quickly-scheduled ceremony took place in Opelousas on December 2, 1956, before the Justice of the Peace. Why not a formal wedding? Well, they had been brought up in different churches, and in those days, families belonging to different denominations could feud for generations and be as stubborn about their beliefs as Satan himself.
But Eddie and Evelyn were guided by something more important and more powerful than any denomination, the eternal truth that "amor vincit omnia" – love conquers all. So it came as no surprise in the community that had watched them grow up when Evelyn Joyce and Eddie John were suddenly married.
There would be no honeymoon for these ardent newlyweds. Dad had to rush back to Texas College to complete his degree. After graduation in May of 1957, he and his bride began their life together in Louisiana. Their future seemed exceptionally bright. They first lived with Mother's parents, John and Berdie Aaron, while becoming established in their jobs.
The summer of '57, though, was spent in Houston, Texas, a city that would soon become highly familiar for this family. Dad could have taken the summer off, as so many teachers do, but he saw those three months as an opportunity to work other jobs and provide life's little extras for his family. At fifteen, he had begun working construction jobs with his uncle in Houston, and he continued his summer hard-hat tradition even through the summer after he had graduated from college.
Teaching offered Eddie and Evelyn a stable and morally sound lifestyle. Dad worked a combination of jobs: classroom teacher, coach, driver's education instructor, and referee for athletic events. Mother taught elementary school, which proved to be rewarding. Life was good, simple and predictable. Yes, things were rolling right along for this couple.
Mother and daddy soon decided that it was high time they started a family. Like everything else in their lives, that venture was successful. On July 14th of 1958, Judy Arnette Guilbeaux was born. She was the perfect first addition to this young family. Eddie and Evelyn, now parents, and as guided as ever by their ambition and dedication to make dreams a reality, built a home in 1959. Once again, life was simple, good, and predictable, just as the good folk of south Louisiana like to keep it.
After delivering their first child, the next matter on the agenda was finding a church home. Mother had been raised in a very religious household. She was the baby in a group of ten siblings, born to parents who were somewhat older than average, who had already established themselves as the owners of a farm. Mother lived very well and she was doted on by both her parents. She wanted for nothing, always had everything. My maternal grandfather was a deacon and Sunday School Director of a Baptist Church, while grandmother was the pianist and choir director. If my memory is correct, they served that same church for more than 60 years.
Daddy's family, too, was very religious. However, he was raised as a Catholic. The second of seven children, Dad sacrificed and shared with younger siblings. His parents owned a farm as well. Things were unusually counterweighted in his household concerning religion. While his sisters were raised in the Baptist faith and attended church with their mother, Eddie John and his brothers were raised Catholic and attended church with their dad. Now, this may be peculiar to some and ironic to others, but it worked out fine for this family. So my parents figured out a plan for their own home. A decision was made very early for the Guilbeaux children, both born and unborn. We would all be raised in the same church, under the same religion, and that religion would be Baptist.
Dad thought that best, because he felt that if anything unforeseeable ever happened to him, his children would be together in a spiritual way. While my parents discussed everything and agreed most of the time on everything, Sunday mornings always highlighted the one element in which they were of different minds. They often joked about their respective places of worship. Mother would comment that Dad's time spent in church was so short that by the time he got home, he had already forgotten what the Mass was about. Dad would say in turn that Mother sat in church so long that he could cook a 12-course meal, with time to spare, before she returned home.
The jokes gradually faded away, but the agreement about separate churches remained.
After five years of being an only child, Judy Guilbeaux became a big sister when I arrived with all the other Fourth of July fireworks. Grandmother Berdie and the youngest daughter, my Mom, together chose my name. Dad was outnumbered by the female persuasion in his own home, but happily so. Both he and Mom knew they would be checking in to the maternity ward again. After all, the Guilbeaux name had to be given the best opportunity to live on.
With two girls in the house, life became a bit more challenging. The needs of a five-year-old and a newborn are vastly different, and Mrs. Guilbeaux became the busiest career mom on the block. Fortunately, two sources of support would soon become available. My dad was then, and remains today, the most resourceful man I know. He researched local resources, and soon a new housekeeper came to the rescue. Between Grandmother Berdie and the housekeeper, Mom's daily duties became less stressful. To this day, I don't know how he did it, but whatever the family's needs were at any particular time, my dad always managed to find the best people in the world. You could call it a wonderful knack for judging character, but I think that he's blessed with the sight to see another person's soul. I am convinced, in fact, that this gift from God saved my dad's life many times.
Now that there were four in the house, Dad worked extra. He wanted his children to have everything they wanted, and more. Mother was adamant, however, that we should not have absolutely everything that we wanted.
To understand my mother, it's important to know that she was always a "kept child." She was the baby, the tenth child born. Her parents were in their mid-40s when she came along. One of their children had died of lockjaw; the other nine survived into adulthood.
My mother was given everything. Her parents doted on her constantly. And she was undoubtedly a striking, perhaps even breathtaking, little girl. She has a very different look about her. Skin the color of a pecan shell, with high cheekbones, almond-shaped eyes, and quite a few European-appearing facial features. Her grandfather, from her mother's side of the family, was a Blackfoot Indian. He married a redheaded Irish woman. Their daughter married an African American, and those two were my mom's parents. Taken all together, mixing Indian and Irish genes with a big dose of African American, they created a very distinctive blend for their descendants.
Because all her siblings had already grown up and gone out into the world, Mom had her parents, their house, and all their resources pretty much to herself. When she was around three or four, her sisters and brothers were almost all out of college, and some of her brothers were away in the military. She hadn't grown up with any of them, hadn't had to share an ounce of her parents' attentions. When her siblings came home, it was as if pleasant company had arrived, more people whose purpose was just to love and admire her. She enjoyed luxuries during her childhood such as a child-sized mink stole and her very own private, real-life Santa Claus at a family Christmas party. Not realizing the value of mink, or how it would need special care, she let moths eat it. And if a little girl has her own Santa, isn't it fitting to believe that things will remain the same in adulthood?
Mom figured out, at a pretty early point, that she had to establish some self discipline in order to have a sensible, well-founded life. So Dad's plans to deluge his kids with special luxuries got curtailed. However, over the 50 years that their marriage has thrived, he has nonetheless been a real-life Santa to many people.
Mom went to the same school that her brothers and sisters had attended. It was in the country, sited on her dad and mom's property, which makes me think that they were quite well off. When Mother went to college, she finished a four-year program in just two and a half years. When she graduated, most of the pieces of her life just kind of came into place easily. There was never an issue. She started teaching. She and my dad got married. They decided they were going to have kids. She had her first baby. There was no problem getting pregnant. They had their home built, and it was ready to be occupied right after Judy was born. Life was fine. There were two cars in the household. She had her career; he had his; its perfect. June and Ward Cleaver, transplanted from TV Land to Opelousas, like a spin-off of Leave It to Beaver featuring an African American cast.
There were practically no horror stories about her life at all, at least not until that stubborn and willful second daughter arrived, the one who became ill and put everybody through their paces.
My mother was born and raised in the church, and it remained a regular fixture in the onward flow of the week for her own household: Monday through Friday she went to work, Saturday was her day to take care of things for the family. Sunday morning she dressed her children and started her day in church. Daddy would go to Mass in the morning while we attended Baptist services. Our household had a very consistent routine. We all knew what to expect. On Saturday morning, there was always an especially good breakfast. On Sunday morning, a visit to the bakery shop. When it was my daddy's turn to get our Sunday treats, he drove straight to the donut shop. And you knew what was going to be in the box.
Mom and my sister Judy got along beautifully and enjoyed many experiences that made their relationship seem more like a sisterhood than anything else. Many evenings were spent alone together, just the three of us, because in the winter Daddy was coaching a high school football team, and in the spring a track team. He worked at every opportunity he could find, doing everything he could to ensure a wonderful life for us all. On top of those football and track duties, he also refereed basketball games and taught driver's education to both teenagers and adults. And although our mother was careful that we not get spoiled, she also wanted us nicely dressed. I especially remember a pair of matching dresses that Judy and I wore for church and other special occasions in the summer of 1966. They were pale yellow with narrow ribbon-like trim at waist and hem, and whenever we had them on, we also wore the same hairstyle, ponytails on each side of our heads.
That was how I looked until spring of 1967, not long before my fourth birthday, on a single day when life's events began to spiral out of control for the Guilbeaux family.
It's phenomenal to look at the childhood pictures from just before the disease came, and just after. My arms and my legs became really pencil thin, while my knees became so swollen that they almost look like two oranges. I looked like the kids from Ethiopia shown on the fund-raising TV commercials, the ones suffering from malnutrition. I didn't have the big abdomen those poor kids have, but my legs and arms looked much the same.
I remember the first day very well. Dad was off somewhere doing his extracurricular work and mom was folding freshly laundered clothes on the edge of our family room couch. Judy, five years older than me, wanted to go on a bicycle ride with friends. I begged to be allowed to tag along with the big girls. With some reservations about the choice, mother nonetheless allowed me to go along. She implored Judy to take care of me, but my big sister insisted that they would be riding for long distances and going very fast. "I can keep up," I insisted. And I got my way.
After what seemed to be an eternity of bike riding, I found myself feeling very tired. Then, on the way home, I fell off of my bicycle twice – once at the railroad tracks, and once on the street. Nothing major, I just skinned my knee. But by the time I made it home, I was so exhausted that mother ordered me to get in bed for a nap. She felt my forehead, and thought I may have been running a temperature, so she immediately gave me children's aspirin tablets, put a cool towel on my forehead, and put me down for a much-needed rest.
I awoke from my slumber, suddenly realizing that I could not move any part of my body, and that I felt as though I was on fire! I yelled for my mother. As she ran into the bedroom, finding me hysterically distraught, she looked my body over. I was feverishly hot to the touch, but there were no apparent signs of rash or discoloration. She took my temperature. "It was so high that I became frightened," she now recalls.
Daddy had come home while I was still asleep. He and Mom rushed me to the Opelousas General Hospital while grandmother Berdie stayed with Judy. That hospital stay extended for three weeks, with doctors ordering test after test. They could find no explanation for my symptoms. None of them had any medical experience with a case like mine. I would repeatedly go into what seemed to be comas. When I would come out of one, my fever would break and the sheets on my bed would become so heavily sweat-soaked that the attending nurses had to change them. My dad recalls the doctor telling he and mom to have my older sister come and tell me goodbye for fear that I would not live. With the number of doctors in my room, around the clock, one would have thought that this hospital had only a single patient, me.
Excerpted from IN A GOOD SPOT by SUZANNE BETH GUILBEAUX Copyright © 2011 by Suzanne Beth Guilbeaux. Excerpted by permission of AuthorHouse. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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