Three years ago, on Halloween, I had my first appointment with my neurologist. It was, by far, the scariest Halloween of my life.
Without a doubt, the doctor told me, yes, I have RSD.
“But, they’re calling it CRPS now. Don’t google it,” he said, “because I don’t want you to lose hope.”
He could tell I was in a bit of a daze. I didn’t know much about RSD and/or CRPS beyond the craziness that was happening in my right leg. He was sitting at his desk, and I was in a chair across from him, looking into kind, knowledgeable eyes. I nodded. We both knew I’d probably google it before I returned to my apartment.
He went on. He told me about the medicine he was going to prescribe to me. He told me how to gently titrate up to the full dose, and what to side effects expect. He told me that depending on how well the meds work (or not) I would probably end up going to a pain medicine doctor. He instructed me to keep exercising my foot, ankle, and lower leg. I asked about dancing again. I asked about walking. I asked about riding my bike. I asked about going back to work. I asked about being normal.
“I know your personality type, so I won’t use the word ‘never’ with you. Take the medications. Accept that you will probably have to go for treatments. Do your therapy. *I wish I could write a prescription for you to swim around a tropical island for 8 hours every day, but I don’t think insurance would cover that.* It will be painful. It will be challenging. You will struggle. You will learn to adapt, and you will change. But, whatever you do, never stop moving, even on the very bad days. Especially on the very bad days. If you keep at it, you will see significant improvement in about three years, and in six, you might find remission. You are an excellent candidate for remission because you are young and fit and care for yourself. We will meet about every three months for as long as we need to.”
Are you for fucking real?! Learn to adapt?? You’ve gotta be fucking shitting me!! Three fucking years for “improvement”? And what in the name of Mother Fucking Holy Hell does “remission” mean?!
For the previous four months, my world had been slowly falling apart, but in that moment, it all finally crumbled. I couldn’t imagine three years. Three years seemed like such a long time (forget about SIX). I did the math, figuring out my age, thinking about all of the years of life that I would lose to a condition known as two acronyms and too many letters representing words I couldn’t remember.
Fast forward. Now, three years have dripped slowly by. I’ve leap-frogged through these years, hopping from appointment to appointment. Here we are, today: three very long years later.
Today, the three year anniversary of the most meaningful and profound doctor visit of my life, was a beautiful, cool day. Without too much thought, I put on a cycling kit and my mismatched shoes and went out for a ride. Just my familiar circuit around my parents’ neighborhood. My left foot clipped in doing all of the work and my right foot hovering sideways above it’s flat platform touching down whenever it felt like it. The significance of today occurred to me during the second half of my first circuit.
My doctor’s words from that first appointment came back to me in prophetic glory.
This is what it means to adapt. I have definitely changed, and, compared to where I was that day three years ago (foot swollen thrice the size of its neighbor, bright purple/red/grey, ice cold, stiffness that felt like cotton in my joints, unable to tolerate any pressure on my heel or ankle without moaning in pain…), I have made improvements.
I listen to my doctors. I take my medications. I accept my treatments. I rarely miss a day’s therapy. I have willfully increased my pain threshold. I am beginning to make peace with the idea of being in continual pain. I am beginning to make peace with a lifestyle that is nothing I ever wanted (and much of what I never wanted).
Still deep in thought, I finished my ride. I pulled my phone out of my jersey pocket to stop the activity recording on Strava. I was shocked by how long and how far I had ridden.
Twenty nine and a half miles. Almost two hours. Like it was nothing.
Except, it isn’t nothing. It is everything.