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| The "scarlet fever" ward at Buffalo Children's Hospital back in the day... |
Story
Healing
Peter’s (Untold) Story
So…this story starts way back when I was three years old going on four, and my brother, Peter, was five.
I’m told that I was the first one to get sick, although I don’t remember that part of the story. I don’t recall the sore throat, or swollen glands, or fever I know now would have heralded the onset of strep throat. I suppose it was nothing to be alarmed about…nothing to see the doctor about…until the rash appeared, meaning that the sore throat I no longer remember had morphed into a case of rheumatic fever.
I don’t recall that part of the story too well. I do, however, remember the “scarlet fever” ward at Buffalo Children’s Hospital where I was admitted with a diagnosis of rheumatic fever.
To this day, I remember it in vivid detail. The pile of Little Golden Books on my nightstand. “The Little Train That Could” and “Peter Pan”. The girl in traction across the room from me. Alice. Ten-years old. The way I cried myself to sleep every night when visiting hours ended and my mother left to go home. I could go on…
And even though I never saw my brother there, a few days later I learned that he had also taken ill and that he was somewhere in the same hospital, at the same time, with the same diagnosis. Rheumatic fever. Before penicillin.
Because I never saw my brother there, I assumed that everything was the same for him as it was for me, so…when the ordeal ended for me, I thought it was over for him, too. But for reasons I didn’t understand, we left him behind the day I went home. No one told me why, and I was too young to ask. In fact, our parents never spoke about it except to say that he was “still sick.”
Which is why fifty years passed before Peter and I shared our thoughts about that time in our young lives…
It took fifty years for him to tell me how gravely ill he was when we were in the hospital together, how close to death he'd come, and all the ways he 'd suffered because of what happened there……none of which he'd ever shared with me.
We drifted apart over the years. I stayed up north; he moved south. I studied medicine; he went into engineering. I had three children; he raised two. Separated by time and distance, we became strangers.
It wasn’t until our mother’s health declined and her memory failed that we reunited to share the decisions we needed to make about her care. We resettled her in a nearby nursing facility, cleared out the old house, put it up for sale, and at last, we spoke.
At the end of the week, we popped open a bottle of good red wine, and Peter broke his silence. He told me about the day he coughed up blood in the hospital. How the nurses panicked, the doctors rushed in, and someone led Mother away.
He was pretty sure he was going to die because no one said a word to him about it. No one explained how something like that could happen, or what it meant…and he was afraid to ask. Instead, he suffered in silence…and he never let it show. When he was alone with his thoughts, he wondered how long he had to live, why no one prepared him for death. Why no one seemed to care. He was five years old!
Thankfully, he did recover. When he was finally well enough to leave the hospital, though, 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.
Family life for us unfolded around his illness. From fear for his life, to endless doctor's appointment, to supporting and encouraging his slow recovery. I was too young understand what was happening back then, and too little to have helped. By the time I found out, it was too late to help him.
Until he told me about it that night, no one knew what it was like for him to be in and out of recovery, in and out of therapy, and on and off antidepressants all his life.
No one understood that he suffered bouts of anxiety and depression all his life because of the assumptions he made about his illness when he was too young to have known better…that he was frail. That he was a burden. That he was doomed. All his life he panicked at the slightest sniffle or cough. He sought affection in all the wrong places. He fell victim to addictions in an effort to find some measure of relief.
I am convinced that if someone had told him a different story…if someone had explained what was happening and what it meant…his entire life might have followed a different arc. Peter didn’t begin to heal until he started to share his story with a safe, supportive community that invited him to re-imagine the first chapter of his life. The way he explained it to me, part of him never emerged from the depths of despair, confusion, and fear he felt as a child because he didn’t understand what was happening to him..
As a physician, I know now that rheumatic fever damaged a valve in my brother’s heart. Because penicillin wasn’t available yet, the doctors couldn’t do much for him. His best hope for survival was to rest his heart and pray for it to heal…which is why he spent a year in bed, alone, in a darkened room…to rest his heart when he got home. Doctor’s orders.
My brother carried his untold story with him his entire life. If I had known sooner, I think we could have started the necessary revisions years earlier.
I could have explained to him how rheumatic fever had damaged his heart. Why he needed to rest when he came home from the hospital. How painful it was for our parents to watch him suffer, and how hard it was for them to comply with his doctor’s cruel orders. He would have grown up understanding how much we loved him and how scared we were that he might still die after he came home.
The point is that the stories we are told, as well as the versions we tell ourselves out of ignorance or confusion, can have devastating and lasting repercussions. It’s important to get them right. Peter’s entire life might have unfolded differently if someone had asked for his side of the story, and helped him tell it.
Does that make sense?
The sad truth is that he still struggles against the fear, dread, and shame that stalked him through his childhood. Because we didn’t know his whole story, we couldn’t help him navigate the pervasive trauma that shaped his entire life.
That was the story I felt I needed to tell. But, believe me, there are other stories I could share with you. I could tell you why I abandoned medical practice out of fear. Or why my husband and I went our separate ways after 42 years of marriage. Or why I stopped going to church.
There are some stories, though, that I can’t tell. Maybe you can. What it’s like to lose a child. What went through your mind when you first heard the word “cancer”. How hard it is to care for someone with dementia. Those aren’t part of my narrative, but they could be part of yours or a friend’s. The possibilities are endless. Maybe everything changed the day you learned your newborn needed open heart surgery. Perhaps it began when the doctor missed the diagnosis or botched the surgery.
Oh! You have a story to tell, all right. It’s in there, all right, even though it may have taken place decades ago. It comes back to you unbidden…out of nowhere…and it still makes your heart race, or your chest ache, or brings a tear to your eye. Perhaps a certain song comes on, or you catch a whiff of rubbing alcohol, or the late afternoon light enters the room at a certain slant, the way it did when you were in the hospital as a child. Or maybe you’re watching the evening news, and you see your own story unfolding in someone else’s life. You understand what they’re going through, and you know what they need because you needed it once, too. You are constantly reminded of the illness, or injury, or recovery that claimed a huge chunk of your life. You wish you could forget it or undo it, but you can’t. It stays with you because it’s an important part of who you are today. It is your story begging to be told.
…which is why you should start writing now if you haven’t already begun…or you should pick up the thread where you left off the last time you gave up on it.
Believe me…someone is waiting to hear from you. Someone, somewhere is hoping you will speak. Hoping you have the answer they are seeking. Hoping to heal.
Now is your chance. Next week, I’m going to invite you to respond to a simple prompt, and to just write freely about whatever comes to mind. It's a an exercise that is intended to encourage you to get started, because:
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