Cycling Series: An Anniversary

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. 

 

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Cycling Series: When Rehab Becomes Training

About a month ago, I was lamenting to a fellow swimmer at the YMCA about how much I missed doing long bike rides.

She said to me, “There was a ride that was rescheduled because of Hurricane Irma. Champions Ride for Charity. It got postponed until October 22nd. There is a century ride, a metric century ride, a half-metric…”

I started to think… Not the century. One hundred miles is out of the question. Metric century? In the olden days, this wouldn’t have even been a question… Maybe the half-metric… It is thirty something miles. That is still a lot. But doable. Maybe…

Three weeks ago, when I couldn’t sleep, in a state of minimal consciousness, I registered for the metric century, a 36 mile ride.

So I started to ride my bike around the neighborhood a little more. I increased my weekly mileage, and included one longer ride per week. The most I did in one ride was just under 30 miles. I was eating well, swimming, and taking care not to push too hard before the day of the big ride.

At some point, it occurred to me: Holy shit. I’m training.

On Friday, half in a daze, half on autopilot, I picked up my packet from the local bike shop. The number 384 was assigned to me. I was told I’d be riding in honor of Thomas J. Kelly, New York City firefighter, a 9/11 first responder who passed away last year.

The day before the ride, my swim friend, the one who told me about the ride, texted me. She wanted to ride too. She invited me to meet at her home because she lives very close to the starting point.

Suddenly, I realized: Holy shit. I was really going to do this.

I’d been hydrating all day. I’d eaten well. I’d trained for several weeks. I was ready.

On Saturday night, I laid out my kit and my mismatched shoes, packed my sunglasses, gloves, helmet, number, safety pins. Yesterday morning, I woke up early, dressed, braided my hair, ate, filled my water bottles, put my bike in my car.

It was very methodical, as if I had done it all before in a past life…

I arrived at my friend’s house, we pinned each other’s numbers, and were off to the venue. She knew several people there and introduced me. Nobody seemed to notice my shoes (or the fact that I was wearing one leg warmer and a lidocaine patch). I felt almost normal. I felt like I belonged.

We lined up and just like that, we were on our way. My friend was nursing hamstring and calf injuries so we committed to each other that we’d take an easy pace. We talked most of the time, laughed about the weird things (like dinosaurs…) along the road, we remarked on the beauty of the scenery (“natural” Florida is actually quite beautiful), we took our time at the SAG stops. The weather was lovely.

My right leg hurt. My right leg always hurts. My left leg did most of the work. My left leg always does most of the work.

After the second SAG stop, I got a little nervous. We were just over 24 miles in. Twelve more miles to go. “I can do this,” I told myself. We set out again, following the markers,  still talking and laughing. And then: roads I recognized.

“We’re almost there!” I actually yelled this out loud. “We’re doing it! We did it!” I was so happy. I looked over to my friend. She was happy too. And we were cheering for one another and for ourselves for the last mile and to the finish. High fives and smiles from strangers and people we’d seen along the way.

We grabbed snacks and some water. We found photos of the fallen officers we were riding for. We were taking pictures and laughing and continued to congratulate one another all the way back to my friend’s house.

Holy shit. It occurred to me: I had fun. This was the most fun I’ve had in over three years because this is the closest I have felt to who I used to be since my accident. I

am still adjusting to the changes CRPS has made to my life, but I am adjusting. I continue to hope for the future, and the possibility of having a happy life again. Despite the misery of having CRPS.

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Cycling Series: Dog Attack

I was almost killed today by a Welsh corgi.

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I was riding my bike around my parents’ neighborhood. Some jerk had three (3!) smallish dogs without leashes, one being the aforementioned welsh corgi.

I was really cruising because I’m trying to beat my time on that particular segment.

I saw the situation ahead and knew it was dubious. I slowed down, looked at the corgi and accidentally made eye contact.

I was wearing sunglasses so I don’t know how the dog knew we locked eyes.

The corgi attacked, lunging at my CRPS foot.

My main concern was not crashing as I barked a loud “NO!” at the dog. It stopped the attack as I stopped my bike, and my foot may or may not have made the tiniest bit of contact with some part of the beast.

I yelled at the guy that he needed to have his dogs on leashes, that his dumb dog and I could have been seriously injured because of his laziness and stupidity. [Please insert as many F-bombs into the story as you feel I would have deemed necessary…]

Then he yelled at the dog, “Bosco! What the hell were you thinking?”

I said, “He was thinking he didn’t have a leash and it would be fun to attack a cyclist.” [insert more profanities- Yosemite Sam style- here…]

I started to roll away and another one of the dogs started coming toward me, more slowly than Bosco.

I said to the guy, “You got another one over here. You might want to get control over all of this.”

As if making an excuse for the dog he said, “He is blind.”

I said, “Well, there’s a *brilliant* idea. A blind dog wandering around outside without a leash.”

He said, “You have a valid point.”

I didn’t stick around to find out if he was being sarcastic.

Cycling Series: 29 Miles

Something very profound happened today.

Today was the day when I’d decided to try 5 laps around the neighborhood. 14.5 miles. The roads are finally clear (enough) of debris from Irma. I started my Strava session and set out.

I thought of a clever name for my ride. I took photos of my bike next to a downed tree and a sign to the energy company (some houses are still without electricity). I was officially Strava-ing, just like the real athletes. And, oh yeah, I also completed my five laps.

I was all set to save my activity. But wait, what’s this? A glitch! Son of a bitch! Strava said I only traveled 2.2 miles. The map was ridiculous. Apparently I hopped fences, cut through yards, took a shortcut through the golf course.

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Crestfallen, I went into the house. I was tired, sweating and texted a friend for moral support. I was hoping to get a reply along the lines of, “aw, it’s ok, you did it.”

Instead, this was the reply:

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Shit.

That means I only had one choice. I had to do it again. I hydrated, ate some gummy snacks, refilled my water bottles, started Strava again, and set out for another five laps.

The session recorded successfully the second time around.

 

 

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Holy shit. I rode my bike 29 miles. Twenty- nine miles!

And then it occurred to me: this was the first time in over three years that my right ankle didn’t dictate, much less inhibit, my activity. My brain didn’t even think about my dumb crippled leg. It wasn’t a factor in the decision to redo my ride. I cried.

My right leg is still very much afflicted by CRPS, but I think I might actually be starting to adapt. I think I might have found a way to hold on to one of the beloved passions that defined who I was. I might be able to reclaim just a tiny bit of my identity. I cried some more.

The one cleat idea was the best idea I will have all year.

Cycling Series: Goals

Yesterday, I rode my bike three times around the neighborhood. Eight point seven miles. I posted a screenshot of my Strava on my Instagram, and in the caption I said that I hoped to break 10 miles on my next ride.

goals

Today, I was feeling pretty good, so I took my bike out again. I went around three times, and considered a fourth. I was still contemplating when I rolled past my parents’ street.

“Well, I guess I’m doing this,” I said aloud to myself.

And then followed with a tentative “I can do this.”

And then followed with an assertive, “I can do this.”

And then I did it. Eleven point six miles.

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I set goals. I attain a goals. That’s how I roll.

Cycling Series: F*ck it. I’m going riding.

I’ve been talking about riding my bike twice around the neighborhood for a very long time now. And there will always be a million reasons not to do something. For example:

  • It is a zillion degrees (Fahrenheit) outside.
  • I almost vomited in the pool this morning because of the heat.
  • My leg hurts.
  • My ankle hurts.
  • My hip hurts.
  • My back hurts.
  • I can’t find my sunglasses.
  • The padding in my helmet disintegrated.

But I am just so dang tired of not riding. Today, I said, “Fuck it. I’m going to ride.”

And I put on my favorite kit, wore my luckiest cycling socks,

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and made my decision: a slow ride is better than no ride. And goddammit, I did it. Twice around. 5.8 miles.

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And apart from being overheated, I don’t feel any worse than I did before.

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Cycling Series: One Cleat

In case you don’t already know this about me, I used to love to go for very long bicycle rides.

Fun facts: My older brother taught me how to ride a bike. I’ve been riding bikes longer than I’ve been dancing ballet, by almost 2 years. I never used training wheels. 

It has been overwhelmingly frustrating not to be able to ride my bike.

Technically, I have been riding my bike. On a trainer, in my parents’ living room. For therapy/rehab for my dumb leg. I don’t count this as actually “riding” my bike.

I tried last autumn to ride around my parents’ neighborhood. It’s a 2.9 mile loop. I could never make it more than once around. My right leg wouldn’t tolerate the pressure and it would launch itself into convulsions and the pain was horrific.

Back on the trainer my bike went.

And I sat there, spinning, pouting, staring at the wall, and thinking: there must be a solution.

I had been considering swapping my left pedal so that I could “clip in” on that side. I thought that I could do most of the work with my left leg. You see, the cleat clips into the pedal and would allow me to pull up on the pedal with my left foot so that I wouldn’t have to push down so hard with my right foot.

The glaring downside to this plan would be developing even greater degrees of muscular imbalances between my right side (formerly my “strong” side) and my left side. But these imbalances are happening anyway- gradually, naturally- as I adapt to find ways to accommodate and compensate for my CRPS. The nature of CRPS is degenerative anyway, so…

But here’s my thinking… If I can pedal with the left foot, using brute strength, the right foot can just go along for the ride. I could stand to gain added safe movement of the ankle joint without excruciating pressure. And I would have the freedom to push with the right foot when it is behaving, and I would have the ability to take the burden off when it gets tired.

I happened to mention my plan to a friend, and in the mail one day came a surprise: pedals!

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It was time to put the plan into action and test my theory.

Fun fact: I know my way around a bike. I spent the summer before my senior year in college working in a bike shop in Manhattan Beach, CA. I did standard tune-ups and assemblies. 

Within minutes, I had the new pedal on my bike.

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Holy crap. This might actually work!