Sunday, July 10, 2016

necessary revisions

My brother’s story, and mine, too, began when we were both hospitalized with rheumatic fever as children. My illness was mild so I assumed his was, too. When I left the hospital, I thought he would, too. So I didn’t understand why we left him behind the day I was discharged. No one explained it to me and I was too young to ask.

The narrative continues:

“In fact, fifty years passed before I learned the truth. As life would have it, we drifted apart over the years. I stayed up north; he moved south. I studied medicine; he took up engineering. I bore three children; he raised two. Separated by time, distance, and happenstance we seldom spoke. When we did, we exchanged news about the weather, our work, and our children. Nothing that hinted at trouble.

It wasn’t until our mother’s health failed, and with it her memory lapsed, that my brother and I reconnected in order to share the decisions we needed to make regarding her care. It wasn’t until we safely moved her to a nearby nursing facility that we finally spoke. Having spent the week sorting through her possessions, and with them, our memories, we sat on the front steps of our empty childhood home and popped open a bottle of good red wine.

Peter took a sip, leaned back against the splintered railing, and broke his silence.

“This is where it all started, you know?” he said. “In this God-awful nightmare of a house.”

This nightmare of a house? Our childhood home in the country with its sunny yellow kitchen, eastern exposed windows, and sweeping front porch, a nightmare?

On the porch steps that night he told me how he’d coughed up blood in the hospital. How he thought he was going to die because no one explained how something like that could happen or what it meant, and he was afraid to ask. Instead, he suffered in silence, in confusion, in terror, and he never let it show.

Until he spoke to me that night, no one knew what it was like for him to have been alone with his thoughts as a child, left to wonder how long he had to live, why no one prepared him for death, why no one seemed to care. None of us understood how fear and dread were chiseled into his heart like the epitaph he believed would appear on his gravestone the day I left the hospital without him.

The Children's Hospital of Buffalo
As the sun set, my brother described the joy that washed over him like a passing shower on a summer day when he learned he was well enough to leave the hospital. Then, with the next breath, he sobbed as he described how relief turned to disappointment, disappointment to sorrow, and sorrow to despair when he learned that he would be kept in bed, in a darkened room, without visitors for a full year in order to rest his weakened heart when he got home.

 “That room they put me in?” he said, referring to a dark, drafty room on the first floor that caught the north wind. “They pulled the shades down and shut the door and left me in there alone.” His gaze locked onto mine. “I thought they brought me home to die.”

I’m certain Mother Earth wobbled on her axis the moment those words left his mouth. I felt it in my heart.”
The point is that the stories we tell ourselves can have devastating and long lasting repercussions so it’s important we get it right. Peter suffered bouts of depression and anxiety all his life because of the assumptions he made about his illness when he was too young to have known better. He fell victim to addictions in an effort to escape what he believed to be the bitter truth: that he was unlovable, that not even his own parents cared about him enough to explain what was happening, to offer solace, or to say goodbye. All his life he panicked at the slightest sniffle or cough. He sought affection wherever he could find it. Had someone told him a different story his entire life might have followed a different arc:

“The way he explained it to me, he never fully emerged from the depths of confusion, fear, and sorrow he felt as a child. Until he told me about it, no one knew what it was like for him to have been in and out of recovery, in and out of therapy, and on and off medication all his life because of what happened to him in the hospital when he was just five-years old, and I was only three. I was too young to have understood it then, too young to have helped. 

And now that I know, it’s too late.

As a physician, I know now that rheumatic fever had damaged a valve in my brother’s heart. The doctors couldn’t do much for him because penicillin was little more than a glimmer on the pharmaceutical horizon back then. His best hope for survival was to rest his heart, and pray for it to heal.

That night my brother taught me something that, as a physician, I should have known. He taught me how mindful you must be when you care for children who are sick. You might not discover until too late that something you said or did, or that something you failed to say or do, had a devastating impact on your young patient. The bitter aftermath of your life saving efforts might stalk a child through life: fear, dread, despair.

They didn’t cover that in medical school. They taught us how healthy children grow and develop. They lectured us about the importance of vaccination, proper hygiene, and adequate nutrition. They taught us to diagnose and treat every kind of illness, to manage every type of trauma, and to identify the signs of neglect and abuse in children.

But they left something out.

They didn’t teach us how to talk to children. My brother taught me that. In the time it took for the sun to set that evening, he spelled out the most important lesson of all: when you care for children who are sick, you need to anticipate their unspoken fears, to explain what is happening to them and what they can expect. And they need to know how long it can take to heal.”
My brother carried his untold story with him his entire life. Had I known it sooner we could have started the necessary revisions years earlier. I could have explained how rheumatic fever had damaged his heart because there was so little that could be done to prevent it back then. I’d have explained why he had to rest his heart when he came home, how painful it was for our parents to watch him suffer, and how scared they were he might still die. He would have grown up understanding how much they loved him: they loved him enough to follow his doctor’s merciless orders.

His entire life might have unfolded differently, if only someone had known his story and shown him the healing path.

“There is no greater agony
than bearing an untold story inside you.”
~Maya Angelou~


1 comment:

  1. Beautifully written, Jan... and very much as I remember that evening. This story and the other writing in your blog about me are an accurate story of my life. One thing I would add is that the trauma I took on in the hospital and in the bed at home affected my life life and continue to have some resonance to this day. I have been fortunate during the past ten years to have a great therapist, a very supportive, wise, and loving wife, and many friends in whom I can confide with no shame. Thank you! -- Pete