LONGER THAT EXPECTED: ADULTHOOD AFTER LIFE-THREATENING CHILDHOOD ILLNESS
A Wising Up Anthology
Every few years, when I rearrange the closet in my office in a hopeful attempt to organize it once and for all, I happen upon a plastic bottle with a blue cap. It is an odd shape, round like a coin, with a raised image of a young girl kneeling in a grotto by a spring. A smear of blue wax is what’s left of a seal that was broken almost sixty years ago, when I was nine. Inside, still, are a few ounces of water from the miracle spring in Lourdes, France.
I never knew who provided the bottle that was brought to my hospital bed. In the currency of the Catholic world of 1958, water from the “miracle spring” at Lourdes was a rare and valuable commodity, certainly more potent than the stacks of novena and holy cards, the rosaries and religious medals that already had accumulated in my small single room on the fourth floor of Lakewood Hospital. My situation must have been mighty dire, not to mention somewhat famous, for someone to part with it.
I had learned about Lourdes in religion class and had seen the movie “Song of Bernadette” starring Jennifer Jones when it was shown in our school auditorium during Lent. The movie told the “true” story of how, in 1848, 16-year-old Bernadette Soubirous was gathering firewood outside her village in the Pyrenee Mountains when she saw a vision of the Blessed Virgin in a grotto. Over the course of the following year, she saw the same sight many times and at one point, “the Lady,” as Bernadette called her, told her to dig in the ground where a miracle spring came forth. The spring became the source of many cures, which were determined to be miracles. To this day, thousands of sick people visit Lourdes each year looking for them.
I don’t remember who it was who opened the bottle and dabbed the water on my forehead and hands as if it were expensive perfume or, more appropriately, Holy Oil, then put it to my lips for me to take a sip. To my surprise, it tasted like ordinary water from the kitchen faucet. The presence of the miracle water drove home how sick I must be, but I didn’t know that the operation to remove my left kidney that was performed a few days later was a last-ditch gamble to save my life.
Looking back, I can see how the image of myself as a frail, weak child, plagued with high fevers and even febrile seizures had changed, even disabled me. If I did sense back then how precarious my future was, I don’t remember it consciously. But the vestiges of trauma, dread and isolation that marked my earliest years are still there, even though as an adult I have been rather healthy.
I have been spared the kind of fear and grief that have tormented some of my friends who have struggled with serious illnesses in themselves or people they love, or those who have lost partners and even children, yet shadows often darken my mood and I have lived with anxiety since forever. Did the uncertainty of surviving my early childhood limit my ability to be present to life, my own and the others around me? It definitely has colored my view of the world, and is one reason among many that, in middle age, I left one religion and embraced another.
My primary care doctor is part of a large practice at a teaching hospital, so on some visits, I receive a preliminary examination from a new resident or medical student. As she or he carefully go over my medical history, many are fascinated by the notation, “left nephrectomy, 1958.”
Why did I have my kidney removed, I am asked.
It had stopped functioning, I say, though I’m not exactly sure why. My best guess is “reflux.”
Now the new doctors are really intrigued – first, I imagine, by the fact that I actually don’t know what was wrong with me. All my mother could explain was that it was a “congenital defect.” Whether she and my father knew what that defect was or were told and didn’t understand, I can’t say. I do know that, after years of high fevers from serious kidney infections and multiple hospitalizations for invasive tests, my urologist determined that my kidney had simply stopped functioning, had in fact shriveled up inside me. There was a chance, not a guarantee by any means, that if it were removed my other kidney would take over its function. He could guarantee that if it didn’t come out I would develop high blood pressure and die. So the surgery wasn’t really a choice.
Many years later, when I saw other urologists and had other tests, and talked to the doctors about my illness myself (something that still makes me anxious), I surmised, with the help of Dr. Google, that I probably had “vesicoureteral reflux,” a not-common but not-rare childhood condition in which urine in the bladder flows back into the ureters, causing infections that can scar or damage the kidneys. When I tell this to the young doctors, they seem doubly fascinated and why wouldn’t they be? These days the condition usually is quite treatable, either with antibiotics or with a not particularly-complicated surgery. By coincidence, I’ve met the parents of at least three young girls who had the problem fixed while still very young.
The baby doctors also may see me as a strange specimen of the olden days, like someone who had polio before the Salk vaccine. As my husband once put it, if I had been born a couple decades later, I probably would have both my kidneys, and if I’d been born a couple decades earlier, I’d be dead.
I also probably wouldn’t have made it if we hadn’t stumbled into finding competent medical help. I had been sick since infancy. My parents had taken me to several pediatricians who could not diagnose the problem, and seemed to collectively shrug their shoulders. (This, after my Slovak grandmother’s folk remedy for “the evil eye,” which consisted of dousing burning matches in water that then was fed to me, also proved ineffective.)
I was about four and had suffered multiple bouts of alarming fevers when my infant brother Jack got sick. Our regular pediatrician was on vacation and a newly-minted Dr. Brandt showed up at our house: this was in the days of house calls, seriously. After he determined that little Jack had a nervous stomach, my mother told the doctor my story. Within a week, I was in the office of Dr. Paul Schildt, who just happened to be a highly-skilled urologist practicing, not at Baby and Children’s Hospital nor the Cleveland Clinic, but in the same suburb a couple miles from our house.
Over the years, this lucky coincidence has left me in grateful awe at my good fortune, acutely aware that there are sixty-plus years that I easily could not have had, and wondering if there were other kids like me who died because they weren’t seen by a skilled doctor.
Until I was nine, much of my life was pain, dread and isolation. The surgery removed the pain but not the other two problems.
Frequent infections meant pain when going to the bathroom, and each of the frequent trips to the urologist involved a catheterization with instruments not made for a small girl’s urethra. Struggling against the burning while the doctor tried to insert the tube made it worse and the apprehension before each appointment made me anxious days in advance.
During a test that I now think was an intravenous pyelogram, an IVP, when the patient is injected with a dye that allows an x-ray of kidney function, the doctor came into the procedure room carrying a needle that looked as if it were a foot long. I screamed; my mother nearly fainted. But getting an injection was nothing compared to getting catheterized.
Once, in order to steady myself, I asked if I could sing, and when the procedure began, I belted out “Yankee Doodle,” which didn’t really help, but I imagine the scene was surreal: a small child in a hospital gown chanting a breathless singsong. My mother, usually calm and composed at these times, and the doctor, who always seemed to be trying to be as gentle as he could, burst out laughing, probably at the incongruity of it all.
Eventually, in self-defense, I began to imagine myself outside my body, a sort of spectator to the whole process. It seemed to make the pain less severe, perhaps because I unclenched my teeth, and watched the scene as if it were a TV show. In the process, my personality was molded. At some point, I began using the strategy when my mother hit me or when I wasn’t chosen for a team on the playground or when, as a teenager, no one asked me to dance at the school mixer.
Before I was nine, I had spent several sojourns in the hospital to have a test called a cystoscopy, in which a thin tube with a light on it is inserted through the urethra so the doctor can see the bladder. The Internet tells me that a cystoscopy isn’t painful, but in those days, at least for a young child, it apparently was bad enough to be done under general anesthesia. At the time, that was ether, a liquid with a unique smell that was administered by drops onto a mask over the nose. I can still remember the dreams I had under it: odd shapes of yellow lines and strange, distorted sounds, which may have been the voices in the operating room, but who can know? After the procedure, I awoke to a round of vomiting and more vomiting. I hated, hated, hated it and one time I resisted going under so strongly, and the doctors kept dropping the ether onto the mask so insistently, that I apparently was overdosed and almost didn’t wake up.
The children’s ward at Lakewood hospital was different shades of brown: scuffed fudge-colored linoleum on the floor and on the walls a kind of tan mixed in with a little green. All the nurses wore starched white dresses and nurses’ caps that varied depending on the school they had attended. Most of the patients there were pass-throughs, children who were having their tonsils out, staying a couple days and eating ice cream. Then there were the long-term residents, those with cystic fibrosis or polio or even cancer. Even though I didn’t really know they were dying, their parents’ voices told the story.
Then there were kid veterans like me, who knew already that the nurse could crank your bed so its sides went up, and that you ate meals on a tray and that if your procedure required an enema beforehand, and most did, it wasn’t going to be like the ones your parents gave you at home, but an unspeakable torture involving pumping you so full of water you were likely to burst.
In those days, even parents could visit only two hours twice a day and children under 13 not at all. So on Sunday afternoons, my father and two of my younger brothers would stand on the sidewalk under my room and wave. I don’t know if they saw me wave back.
I’ve read stories about dying children and how they know more than the adults tell them, but I really don’t think I did. When the very young (and new) parish priest came to visit me in the hospital after my surgery – a huge deal in itself – he happened to mention that I’d had my kidney removed and I became hysterical. My parents had assumed, I guess, that I knew an operation meant something was removed, although maybe they had told me and I simply chose to ignore it. Whatever it was, I felt betrayed and broken.
I also chose not to take in the full ramifications of what it meant to have one kidney. Here’s a story: In order to prevent more infections that would damage my one remaining kidney, I was prescribed an antibiotic called Furradantin that I was to take several times a day. It was expensive, costing maybe a quarter apiece, but worth every penny if it guarded my health. Except it didn’t, for one important reason. Furradantin made me nauseated, so much so that, for decades, its particular shade of yellow had the power to make me gag no matter what I had or hadn’t been eating.
So I took matters into my own hands, literally. When I was handed the pill, I made a grand show of seeming to put it in my mouth, drinking water and swallowing it when in fact I was palming it and putting it my pocket. When I had collected a bunch of them, I would slip away to the park and bury them. It never occurred to me that this could have serious repercussions; I was thrilled when the doctor, seemingly mystified, changed my medication to four large maroon pills – “horse pills” in the parlance of the times – and I seemed to do better. That’s only one instance of the denial that I adopted as a defense from being sick.
In sophomore biology class when I was 15, I read an article that said something about how, in these modern times (that is, 1962) some people – not all, was the clear implication – could actually live into adulthood with only one kidney.
The routine of standing outside myself returned and I watched myself while I panicked. I looked around at the other girls who of course had not reacted at all to this paragraph. I wanted to follow Sister Visitation down the hallway and ask for reassurance that this didn't mean me. But instead, I put it out of my mind, like I still do: denial and distraction have been a comfort to me, and still are, unfortunately.
I came to believe, although I would never say so out loud, that somehow I had paid my dues and now nothing really bad could happen to me because, well, it wouldn’t be fair. I write this now and am embarrassed to say that the feeling, although much diminished, hasn’t entirely left me. It’s as likely as not that some day just such a diagnosis will signal my end and I wonder even then if I will believe it fully.
I was well into my thirties when I realized that I no longer considered myself a sick person. Doctors I had consulted as a young woman had voted 3-2 that childbirth probably would not seriously damage my remaining kidney, not the greatest odds. But we went ahead anyway, and I delivered two healthy children with no problems. I rarely was physically sick except for the occasional cold or flu, or the time I pulled a muscle in my back.
Yet when, at age forty-two, I converted to Judaism, I found, somewhat to my surprise, that I began the “faith statement” I had been asked to write with a reference to my childhood illness and how the teachings of my native Catholicism had so exacerbated it.
When I was young, I never dared to be angry at God for filling my life with pain and fear, for that itself could be a serious sin. It was only later that I uncovered the deep bitterness I felt at the fetish that the Catholic Church of my era made of suffering, making it something to be desired.
I am not sure if one of the sisters at school actually told me directly that I had been especially blessed to be in pain much of the time, that suffering was a gift and the bearing of it (uncomplaining, of course) would help atone for the punishment in Purgatory due for my sins. This was a frequent teaching, as was the assertion that one should be happy to die because it meant one would be with God . . . and if we were frightened, it likely was because we had mortal sins on our souls and feared we would be sent to hell.
The devotional books we read spoke in glowing terms of saints who, not having enough pain naturally, made themselves even more uncomfortable: sleeping on slabs of wood, starving themselves, even self-flagellating with little whips and tiny nails.
The monologue of a character in “Song of Bernadette,” a nun who questions the truth of Bernadette’s visions, accurately captured the philosophy. “In all our sacred history,” she says, “the chosen ones have always been those who suffered. Why, then, should God choose you? Why not me? I know what it is to suffer . . . My throat is parched from constant prayer. My hands are gnarled from serving God in humiliation. My body is pain-racked from stone floors. Yes, I have suffered, because I know it is the only true road to heaven.”
It’s absurd, of course, but I absorbed it all, with no ability to filter out the more ridiculous claims. I wasn’t embracing this suffering as a precious blessing from God and I didn’t want to die. That was sinful or at least colossally ungrateful.
Many years later, twenty years after marrying a Jew, raising my children Jewish, celebrating Jewish holidays and even helping to found a synagogue, I decided to convert. In my experience, liberal Judaism focused on choosing life. Its services were joyous. It spoke of Sabbath delight. Even though Jews have suffered as much if not more than any other people, we are taught to be present to happiness and notice the blessings. Suffering and loss are an inevitable part of life but the idea of seeking it out would be utterly foreign.
My rabbi, Yael Levy, passed on this blessing from rabbis long past: The first question we will be asked when we leave this world is this: Did we partake of all the delights of this life -- the beauty, sights and sounds? Did we experience all the joy we were offered? Did we enjoy the pleasures? Did we discover what gave us joy and did we pursue them?
Perhaps if I had not been so thoroughly soaked in the nobility of suffering, my adult self might have been able to distill such a message from the religious tradition in which I was raised, but I no longer had that desire.
It’s been twenty-five years and the rhythms of the Jewish calendar have become my own. I love the comfort and creativity of a community that not only supports us in sorrow but dances with us in our good times. After twenty-five years, most of the bitterness is gone, but not all.
I have heard stories of people who say that surviving a serious illness made them better people, gave them more appreciation for life, made them more aware of their blessings, more mindful of the passing of each moment. In an interview, the writer Sherman Alexie said that after brain surgery and a near-death experience, “I lost . . . a certain part of the bad stuff. And I think that took away twenty percent of (me), much of it hatred.” Some people even say that serious illness was one of the best things that have happened to them, that being sick brought them something positive. I believe them; I just have not had the same experience.
In recent years, I’ve made a point of marking January 9, the day of the surgery that changed the trajectory of my life, and say a special prayer of gratitude. Yet I still struggle with that sense of being somehow outside myself, distracted by unimportant details and unreflective of the way time has passed, is passing.
Not long ago, I looked closely at the scar on my left side for the first time in many years. I even measured it: nine and three-quarter inches long, with the marks of the stitches about one and a half inches apart. It is very faint, but there’s a noticeable difference between the way the right side and the left side of my body has developed. On the left, the scar did not stretch with the rest of me and so that side is a little concave, almost as if, as one of my friends imagined it when we were young, that I had a vacant space inside me.
Is the metaphor too obvious? The scar, faint as it has become, is permanent.
CAROL TOWARNICKY, at sixty-nine, is a semi-retired journalist and writer who spent more than 40 years in the newspaper business, most of it writing editorials and opinion columns for the Philadelphia Daily News. She also has written fiction, essays, Bible commentary and liturgy. Born and raised in Cleveland, Ohio, she lives in Philadelphia with her husband of forty-six years, has two adult children and a nineteen-month-old grandson. She is in relatively good health.
What kinds of misperceptions do people have about the kind of illness you had?
Since I was so young when I was sick— and essentially out of danger at age nine, although I didn’t know it at the time—I'm not exactly sure what caused one of my kidneys to stop functioning, and I’ve never wanted to pursue exact explanations much further. But if I’m correct, the medical problem that mystified the doctors and could have ended in my death is one that is relatively easy to diagnose these days and relatively easy to “fix" so children who have it don't suffer permanent damage to their kidneys and therefore are not sick for very long. It's hard to explain what it might have been, let alone that I don't know.
What do people misunderstand about your own experience of your illness?
Since most people I know now don’t know that I was sick, there’s not much to misunderstand. I’m not sure that, until recently, I understood myself that some of the after-effects from the pain and trauma of the treatments for my illness still are with me today.
What is an important source of strength you have found through this experience of childhood illness that has helped you as an adult?
I can’t think of how being seriously sick as a kid contained any source of strength. Instead, the coping mechanisms I developed for the pain and uncertainty continued to follow me into adulthood even when they weren’t needed anymore. The real source of strength, I believe, came to me when, as an adult, I gathered some courage to “go through” emotional pain rather than using the methods I had devised as a child to escape or disassociate from it.
How has your experience of life-challenging illness at an early age changed your own understanding of what it means to be an adult?
It’s impossible to know how I would have looked at adulthood had I not spent my early life with a serious illness or developed a self-image as a sick and fragile person, so I can’t say how the illness impacted that understanding.
How has your illness changed your perception of life?
While I don’t always remember it, I do know how fortunate I am to be alive, and to have had close to sixty years of life that I might not have experienced. It’s a humbling but profound experience to do a little exercise like that of George Bailey in “It’s a Wonderful Life” and think about all the things I have seen and learned, the people I have met, the transformations I have experienced and, perhaps, the difference I have made in the lives of others—and how things might have been very different. It's also sobering to recognize how random life is and how so much of my recovery was just plain luck. Bad things happen to good people all the time and I have never wondered, "Why me?" It's much more likely for me to think, "Why not me?" I also believe that my choice to leave Catholicism, the faith of my childhood, and convert to Judaism was influenced by the lack of comfort I felt from my faith as a child as I struggled to understand what was happening to me and why.
How has your illness affected your view of parenthood?
I didn’t begin to understand what my parents might have felt at having a fragile child whose future was precarious until I became a parent myself. Thankfully, I was never faced with the kind of decisions my parents had to make—about whether to go ahead with surgery, for example. But the few times my healthy children suffered from childhood illnesses, I got a glimpse of what it might have meant for them . . . an understanding that continues even though they are well into adulthood.