The Yale Journal for Humanities in Medicine

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Are My Legs Always Going to Hurt?

Jeremy Daniels had Kawasaki’s disease as a baby and joint pain due to arthritis when he was a child. He had a triple coronary artery bypass operation at age 12. He plans to practice palliative care medicine.

I don’t know when this kind of pain started, and I don’t know when it will go away. My doctor told me the pain is from arthritis and that pills would make it go away. But as I lay here waiting for sleep to take me over and bring a new day it dawns on me that these pills, blankets, and hot water bottles don’t prevent tomorrow’s pain. They’re answers for what’s a problem now, and if I know my knees, the problem will be back again soon.

What I would really like to know is whether this kind of pain will happen all my life. Nobody knows if it will go away or stay forever. To me it seems as if this pain is a part of me, a part of who I am, shaping and moulding me – myself bending myself against my own wishes. And it makes it hard to go to sleep. Some days I wish they would cut my legs off so I wouldn’t have to feel this. And again, I wonder if this will always be a part of my life.

Will I be a teenager, driving in a car with my girlfriend and have to pull the car off the road, stop, and wait for the pain to go away? Will I be a grown-up, with my own son to look after and have to ask him to get me hot water bottles for my knees? Will I live this long, or will the pain spread into my chest and head and kill me as it does? Will my heart problems kill me first?

What did I do to deserve this?

My mom said the doctors don’t know what will happen to my knee pain, that no one knows whether it will stay or is just a passing visitor. I’m lonely with this pain. My brothers and sister look on to me with regret and sadness, but don’t understand what the look on my face means. They don’t understand what it means to be me, Jeremy, the one whose legs just seem to begin hurting on any given evening without heed for place or plans.

Why must I be so lonely, yet accompanied by dark twisting from deep inside my legs?

And when is this going to stop?

Published: March 5, 2006