Each of us sees life through our own personal lens. This lens was and is crafted over the course of time from our unique collection of experiences. We learn--consciously or unconsciously-- from every experience in our lives. Our lens is our own personal belief system--not so much a religious belief system as an understanding, attitude, action, reaction, and interaction belief system. This personal belief system--this living ever-evolving lens of our life-history's making--determines how we approach ourselves, others, and life--and its problems and interactions. Our every experience is filtered through this, our personal lens. This lens isn't static, but living. Alive. Dynamic and evolving. Each new experience in our lives influences our lens--reinforcing or altering it.
We're so used to seeing through our personal lens (there's no way we can step away from it anyway--the most we can hope to do is see it by contrast with others') that often we take it for granted. We don't even realize it's there. And because of this, too often we're prone to presume--often wrongly-- that others' lenses are the same as or very similar to ours. Only when it becomes clear that others' aren't, do we start to notice our own lens. And as we start to notice and even question our own lens, we inevitably eventually start to back track and discover how we constructed our lens in the first place. Eventually we come back to the stories of our most seminal life events--the most important or pervasive personal narratives; those that figured heavily in the construction of our unique personal lens. We would do well to unpack these influential narratives so that we might begin to understand why we react the way we do. Why we trust when we trust. Why we fail to trust when we fail to trust. Why our attitudes, actions, interactions, and reactions are the way they are.
sem·i·nalˈsemənl/;
adjective1.
(of a work, event, moment, or figure) strongly influencing later developments.
"his seminal work on chaos theory"
synonyms: influential, formative, groundbreaking, pioneering, original, innovative
This post tells the story of a seminal medical experience that informs my relationship to the medical world. It's my story--but even more so, it's my parents' story. It's the story of a young couple who fought bravely--and finally, successfully--to secure the medical care that saved their child's life.Had any one of the us in this story have been slightly different people, with slightly different character traits--this story would have turned out very differently. And very badly.
The child would have passed away as a preschooler. And while the world at large may not have cared about a two year old in a rural backwater dying, as "It's a Wonderful Life" teaches, every life touches many others and influences or alters the course of history.
And so, had I died back then, life would have turned out very differently for many. In an alternate time-line, my husband would have married someone else because I'd not have been around. And subsequently, at least eight people--our six children and two grandchildren--would never have existed. It's mind-boggling to speculate on the what-if's of alternative time-lines. But it's true that the world is permanently altered in some real way by the presence or premature absence of each of us in the stream of time.
This was a story I grew up hearing from the lips of others because I was far too young when the events of this story took place, to know or understand what was going on and why. I do remember this period of time in the hospital and onward. But the memories of a young child include none of the important facts or the details of context. A two year old child's memory is sketchy. Mine include snippets of traumatic memory laced with intense adrenaline-laden emotion--bewilderment, fear, terror, and loneliness, and the indifference of others--devoid of the reasons for any of it. These early childhood-experiences themselves helped form part of my personal lens. But that's not what this post's about. This post is about this story as it comes to me though my parents' perspectives. And so, this story as I tell it here, is really of my parents' telling. I remember none of it. But my life hinged on it. And their telling of the story is a part of my own childhood memory. Folded into who I am, influencing the formation of my own personal lens.
And so, here it is. The story....
That gut feeling that something was wrong had recently morphed into an overwhelming certainty. Death would come soon. Unless she did something. She'd been trying for a long time now--more than two years--to get the doctor to take her concerns seriously. He was a Norman Rockwell painting sort of doctor--middle aged, white haired, established, experienced. With a twinkle in his eye, yes, but respected enough to presume that his judgments were the final word. Period. End of story. He, the good doctor, was a veritable institution in the county seat of the rural farming community where she lived.
And she? She was a 20 year old high school graduate, a part-time grocery clerk, a young first time mom; her husband, a 23 year old factory worker. Married with child, yes. But both of them still decidedly wet behind the ears. Who was she to challenge him? But still she did. Time after time.
Every time she once again turned up on his day's schedule, just reading her name caused a little closing of his eyes accompanied by a heavy sigh. And with everyone of her after-appointment leave-takings, he experienced a little twinge of exasperation from which he had to right himself before he was ready to see the next patient. This sort of behavior was to be expected with some number of young, first-time moms. He tried to remember this whenever he reassured her that her baby...and then as time passed, her one year old...and now two year old...really was fine. She was simply one of those nervous young moms whose baby happened to have a chronic but common minor but troublesome issue. Which simply fed into her worry. And so, he kept reassuring. Offering over the counter helps and suggestions. And sending her on her way. But she just kept coming back. And coming back. And coming back. Wasting his time. She kept asking for answers; he kept giving the same ones. She kept asking for tests. And he kept saying no. He was wearying of this dance, as was she. Surely she would soon mature into motherhood. Surely she'd finally simply buckle down and deal with it; surely she'd soon realize she had to deal with this chronic issue without presuming it portended disaster.
And yet, the feeling that death was near for her child persisted. It didn't let her rest, pressing her night and day, troubling her sleep and dogging her days. She couldn't say why she felt this way; only that the feeling was there and that it was strong--even overwhelming. And it demanded attention. The chronic symptoms she'd been battling weren't abating and even seemed to her to be worsening. And finally, because she could find no peace, she got desperate. She enlisted her husband's help. And together they devised a plan to try to finally get their sick child the health care they felt she needed. The health care she wasn't getting, despite all the recent doctors' appointments.
And so, several months after he'd last seen the young mother, the good doctor looked down at the day's appointment. And there was her name again. He shook his head and sighed. Later that day he sat at his desk, busying himself with papers from the last patient as Nurse Allbright (yes, the name was an apt description of the cheerful, immaculately groomed nurse), ushered the young mother into the room carrying her child. She was dressed smartly, as always. Carefully coiffed hair, Red lipstick, nice skirt. She held the child on her slender hips. Clean. Well-cared for, yet looking pale and unhappy. And then he started; now what was this? A slender young man--her husband, thin, wiry, and strong--followed her into the room looking simultaneously friendly, earnest, serious, and resolute. He confidently but respectfully extended his hand in greeting. "Hello, Doctor." A factory worker dressed in blue jeans and T-shirt, hair neatly combed. His presence changed the atmosphere of the room. He clearly meant business.
"Sit, sit. Yes, please have a seat" he said after shaking the young man's hand. "What brings you here today?"
The doctor started to answer with his usual reassurances, but the young man cut him off, leaning forward on the upholstered leather chair. The bottom line, the young father told him, was that he--the father--wasn't going to leave the good doctor's office today unless and until the doctor took his wife's concerns about their baby seriously. He wouldn't leave until the doctor did something to finally try to figure out what was wrong with their little girl. If the doctor refused to help them and called the sheriff to have him removed, then, said the young husband, he'd simply allow himself to be arrested and taken to jail. He was willing to risk arrest to get his daughter the medical care she needed.
The white haired doctor looked over his spectacles at this young father and sighed deeply. He'd seen everything now. This young fellow was threatening him with a sit-in? To get his misguided demands met? Clearly he'd come here to press the point for his wife. And he was building his threat to a crescendo. Now he was saying that if he were arrested and taken to jail, that the minute he was out of jail he'd be back here in the doctor's office again. He stated that he was willing to go to be arrested and go to jail and come back again to the doctor's office as many times as it took until the doctor relented and helped them. He stated that he would be there every time the doctor looked up. He'd be there waiting for the doctor--a permanent presence in his office. And so it would go over and over again until the doctor finally took their concerns seriously. Until he ordered some tests to get to the bottom of what was wrong with their young daughter. The doctor was irritated, insulted, and exasperated. This man's bravado was intense; he was not going to give up. The two of them exchanged a few guardedly hot words before the doctor checked himself.
He was backed into a corner, but he quickly realized again, that he was also the one in control. He wouldn't let this situation get out of control. He'd dealt with hotheads before. The solution to the ever-returning young worried mom might be easier than he thought. It only required the tests to prove to her that all was well with her child. But what was this young father expecting? He wanted to hear it from his own lips. And so he said "What exactly do you want me to do?" It was as much a rhetorical question as not, both a negotiating question and also a sign of exasperation and surrender. After all, he not only had to diffuse this situation, but he to get things moving along here. He had a waiting room full of patients needing to see him. He had no time to spend on a ridiculous conflict like this one. He would simply give them what they wanted. And it would send them on their way in more than one way.
"I don't know. Would an x-ray show anything?" the father ventured
"It might. If there were anything to be shown.".
"OK then. Let's do that"
The doctor smiled wryly. The stand-off was over. He instructed Nurse Allbright to call and make arrangements for a timely x-ray at the county hospital. The young couple with child left his office willingly, thanking him. No hard feelings on their part. And he went on with his afternoon appointments.
Coming back from the x-ray, the couple heard the phone ringing as they were unlocking the door of their house. It was the good doctor.
The situation, he said, was urgent. The good doctor apologized. He told them that they were right. The x-ray showed there was something very seriously wrong with their little girl. Their young daughter was a very, very sick little girl. In danger of dying--just as her mother had somehow known. He said he'd already made arrangements at the Children's Hospital in the state capital two and a half hours away. There an excellent surgeon would be waiting to examine their little girl. He'd already spoken to him. The surgeon would try to save her life. They were to quickly pack what they had to have and drive directly to the hospital. "Don't delay. Get your little girl there as soon as you can safely can. It may already be too late."The young mother should have been happy, but there was little joy in her victory. Being right about the fact that your child has a serious medical problem that will soon kill her is nothing to celebrate. They could only hope that help hadn't come too late. The two and half hours the two parents spent with their little girl in the car on the way to the hospital--after packing their bags hastily--was a little like torture.
The tall, red-haired Pediatric Surgeon who met them the next morning after examining their child told them that it was unlikely that their child would survive. In fact, he estimated she had about a 40% chance. If they had discovered the problem sooner and brought her in sooner, he could have given them a better prognosis. But as it was, this late in the game, things didn't look good. There would be weeks of preparation before he could do the life-saving surgery. The time of preparation was risky; a rupture during that time would be catastrophic; he wouldn't be able to save the child if that happened. There was also the chance that if she made it that far, that she might die during the risky 8 hour surgery--what he called a "dirty surgery." And even if she survived the surgery, an infection any time after that would also likely kill her. He and his staff would do their best to save her, but the parents should prepare themselves for the likelihood that she wouldn't survive.
The weeks that followed were the hardest of their young lives. They said their good-byes and tried to make their peace every day. It was devastating--and they both cried--when their daughter's young hospital playmate was there one day and gone the next, not having survived his own surgery. They struggled to maintain their composure and hope. The severe issues of the children around them made them feel that their own situation was somehow easier. Though it wasn't. Still it made them remember to be thankful for every day she was still alive and for every small mercy shown them.Somehow, miraculously, their little girl made it to the day of surgery. And somehow she survived the 8 hour surgery. At the end of the surgery, the Pediatric surgeon came out, still in his scrubs, to talk to them. He said that they should know that their child was a fighter. He felt that she desperately wanted to live; she was strong and her will to live was strong. She was struggling to live. They should know that he'd done his best to give her the best chance he could give her, to live. But there would be weeks more before she was out of the woods. An infection during the weeks that followed would kill her.
And so the tenuous nightmare continued for weeks more. But finally the day came when they could say that their little girl had beat the odds. That she had lived and that she would live. It was time to take their daughter home from the hospital.
The take away from this experience--for both parents and, as she grew into adulthood, the child--was a deep conviction that gut feelings are to be trusted. That doctors can sometimes be wrong--they can and do sometimes make mistakes. Questioning doctors can sometimes be, not just necessary, but also life-saving. Medical can be both life saving, but also hit and miss. And so, in the end, you are responsible for your own healthcare. The buck stops with you. Not with the doctor. And the best doctors are those who are humble, know that they don't know everything, are open-minded, and are welcoming of discussion. Open-minded doctors save lives. Dictatorial doctors are dangerous.
[Dr. H. William Clatworthy] had little patience for error and was a strong proponent of the importance of caring for patients at the bedside as well as in the operating room. With his red hair and occasional flare of temper, his colleagues and trainees often referred to him as "Big Red." Many of his residents will remember some of his favorite quotes during bedside rounds such as "It's the little things that count" and "Don't let anybody hurt the babies." When he disagreed with a choice of patient management, he often showed his disappointment by shaking his head from side to side and stating "What this baby really needed was a doctor."We'll let the name of the family doctor remain unknown. My parents weren't the only ones who learned from the mistake the good doctor made. The good doctor really was a good doctor, one to whom my parents continued to entrust their family's care over the years. One that they talked about as being a good doctor. And one that they still revered and respected. Everyone makes mistakes. And that's why parents must be vigilant. To keep their child safe when those mistakes are made. And the good doctor never again made the mistake of not listening to my parents' concerns. Sometimes the best relationships are those that involve a history of conflicts, mistakes, apologies, and forgiveness. The unspoken understandings and respect involved goes deeper.
This story then is about a brave mother who saved her child's life through listening to her gut instincts and acting on them tirelessly, over months and even years. And a mother who, when she failed, didn't give up, but came up with a new strategy.
This story is one of a courageous father who was willing to stand behind his wife and willing to threaten a powerful doctor in a non-violent way and to risk jail time to finally get the doctor to listen.
This story is also about a brave doctor who swallowed his pride and gave up and gave in, thus saving a child's life by ordering a simple x-ray.
This story is also about a legendary pediatric surgeon who carefully guided a child through treacherous waters and then performed a delicate eight hour surgery to save that child's life and then closely supervised her afterward until she was out of the woods.
And last of all, this is a story about a child. A child who was not old enough to play a very big part in any of this, but about whom this story was ultimately about. A child who endured years of suffering because of a doctor who wouldn't heed a mother's concerns. A child who endured a month of traumatic hospitalization, and yet had a very strong will to live. A child who, when given the chance to live, seized it and hung so strongly onto life that she beat the odds.
But ultimately, this is a story about love. The love of parents for their child.
My parents and extended family had welcomed me into their world and loved me so deeply and so well, that already by the time I was two years old, my young self had bought so completely into life, into their love, into the fact that I was lovable, and that the world and the people in it so wonderful, that I desired very strongly to remain in the world of living. And it was because of this--because of their love, that I fought so hard to live.
In the end, it was love that drew me into life and beckoned me to stay. And it was love that caused my parents to persevere and then risk everything to save me.
There is not a single day that goes by that doesn't find me very grateful for the gift of love and life.
I should not have lived if not for love.
And I'd have died young if not for love.
"Love always protects, always trusts, always hopes, always perseveres..."
Do you think this basically pre-verbal experience helped prepare you to be the warrior you are in regards your daughter's epilepsy?
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