I am not a whole and complete person.
All you have to do is look at my medical chart to know that this is a fact. I have a different doctor for every part of me. I am not an “I” or a “me” — I am the parts of my sum.
Don’t get me wrong: My medical team is amazing. My colorectal doctor is one of the most brilliant, creative minds the medical world has known. He understands that dance is what makes all of the pain worth it for me. He knows that I will talk — a lot. He knows that nothing matters more than my daughters.
But even with amazing physicians like him, the “me” I’m supposed to be has gone missing. She is now fragmented into disparate pieces, each one at war with the other.
I wish that I could update my medical records so that they reflect the real record of my life.
My feet — once frozen from a surgery-related epidural that wouldn’t wear off — are more than just matter. They support my entire body weight with finite muscle, meticulously honed and trained throughout the years. They are not meant merely for scratchy yellow socks with fall-risk padding.
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My hands have known blown veins and bruising beyond belief, but they are also my preferred source of language. For every awkward IV placement, my ability for verbiage is lessened.
The parts of me that touch, tell, and tread, are now meant for entry, error, and excavation.
I look at my legs in a hospital bed and see the shapes they will soon make on a stage. I see the walks I’ll take with my children. I see the stories yet to be created for dancers and dreamers.
But when I look at my paperwork or through the eyes of those looking at me, it’s hard to see wholeness in any form.
“Do you think doctors see me,” I’ve asked my partner many times. “Do they realize that I am at the top of my field, as they are in theirs?”
Perhaps if they saw how I dance on stage, they’d know? If they witnessed the song that I sing for my daughters at night, using my hands and voice? If they scrolled through my schooling, or résumé, or accomplishments? Maybe then I could enter the room as they do. Perhaps then we could look at each other, not part by part, but directly where it matters: in the eyes.
I can’t imagine the difficulties that my physicians encounter with every face. I count the anti-smoking posters in my pulmonologist’s office. I marvel at the healthy eating brochures at my gastroenterologist’s. I feel sorrow for those who treat the many who can’t help themselves.
Without my medical team, I wouldn’t be here. I need and appreciate them. But the system we work within — that divides until there’s nothing left — doesn’t help.
For all of the progress made in medicine, we must remember that science has never been perfect. We used to buy potions from traveling medicine shows. We gave babies morphine for teething. We used mercury and arsenic. Bloodletting happened, as did the practice of trepanation — drilling holes in the skull to cure illness. Even low-key cannibalism had its place in medicine.
Sure, I’m condensing thousands of years of medical progress into a few lines, but the point is that we are all human.
Medicine is intrinsically fallible because we are fallible. No matter how far we’ve come, one fact remains: Medicine has hurt as well as helped throughout history.
I am not merely my missing colon or fatty liver or gunky sinus cavity, though those are a part of my parts. I am a whole and complete being who is just as capable of triumph, discovery, and mistake as the physicians before me.
Here’s the ultimate secret: The person in the bed and the one in the white coat are the same.
Today, I will go to one doctor for one body segment, and tomorrow for another. I will continue to connect the pieces of myself that matter most, even when I feel alone. I will create memories and experiences that go far beyond my records.
And I’ll continue to look medicine squarely in the eye for what it is: an ongoing mess of parts for which I will never have all of the answers.
Hopeful, helpful, harmful — yet, perfect.
Just like me.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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