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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The Rest of My Day: The Value of a Simple Question

I have a very close friend. We’ve known each other for more than 20 years. She has been and continues to be the main emotional support in my life. She lives on the West Coast, and I, the East.

We usually talk on the phone (that’s right… on the phone… like, with our voices…) after I swim or after I ride my bike.

She is very busy. A mom, a devoted wife, business owner, active community member. She lives like I used to (one of the things that bonded us as friends early on): she crams as much as is humanly possible into a 24 hour period.

…I’ve realized that much of my self-worth was, still possibly is, tied to how productive I am, how much I do in a day…

In our conversations, we talk and laugh and just basically shoot the shit. She is usually running errands (which I love because it gives me a tie to the outside world), and I am usually resting. I cherish this woman and would be absolutely lost without her. So, what I am about to say pains me very deeply.

Our almost daily conversations always involve her asking me the question, “so, what are you going to do with the rest of your day?”

It’s innocuous. Simple conversation. Meant to be a harmless question one friend asks another to show they care.

The thing is that I always talk to her *after* I’ve done my “productive” efforts of the day. After I swim for roughly an hour, after I ride my bike 15 or 20 miles.

On most days, yes, that is truly all I “do.” And I am proud (very proud) of now having the ability to spend almost 2 active hours during a day. Some days, I might be called to teach a ballet class to children, or I might have to go to the bank, but for the most part my days follow the same simple schedule: swim, bike, meds, rest.

So the question, about the rest of my day, hits me. Hits me hard. Because I’m already done with my day before noon, her time. She doesn’t ever judge, and she doesn’t ever imply I should be more productive. I just feel like a worthwhile person should have an interesting answer to that question beyond “I need to take my medication and then I’ll probably sleep until dinner.” I have begun to dread the question.

You might think I should simply tell her about how the question makes me feel. I disagree. These are my emotions to explore. If I tell her, then that will make her feel like she has done something wrong, like she has been insensitive in some way (which, is impossible- she is the most benign, most selfless, most sensitive, most kind-hearted person I know).

My issue is with my perception of myself within the question, not with the question itself. And there is great value for me to try to explore this perception.

Why do I allow it to make me feel completely empty? Why do I allow it to make me feel worthless? Why do I judge my current life based on what I used to accomplish in a day before CRPS stole everything (including the ability to be productive) from me? And were my pre-CRPS accomplishments really that great, or was I just keeping myself busy to inflate my self-esteem and to keep myself from being bored?

The truth is, no, in fact, I am not a “productive” person by modern society’s standards.

However, I am finding ways to do the impossible. I have refused to resign my future to a miserable lonely life in bed crippled by CRPS. I am fighting my fate. I am figuring out how to adapt in order reclaim crucial parts of myself. My rational brain knows these things and tells my psyche to loosen its grip on my self worth.

Yet deep down, I feel like I’m simply pandering to myself if I dare congratulate myself on the tiny, and monumental, improvements I’ve made to my life in the past three years, four months, fourteen days. Why?

 

Aftermath

I came home from my 36 mile charity ride, feeling proud, triumphant, and almost jubilant.

But, I know my body, and I’m learning how CRPS works within it. I knew it was coming:

*THE AFTERMATH*

As soon as I got back to my parents’ house, I ate. And then I took medication and vitamins. And then I showered the ride away. Then I went to sleep. I woke up. Ate dinner. Took more medication. Went back to bed. My leg felt shaky. It hurt.

I knew a flare was bubbling.

I am trying to do everything within my power to keep that flare at bay.

My next sympathetic block isn’t until December 1st. I can’t have a flare-up set-back before then. I have to figure out how to incorporate activities and an active lifestyle into my life with CRPS. The ride I did yesterday is the next phase in this learning process. Especially since my ultimate goal is to get back to century rides.

Organized rides take a lot more stamina and energy than simply the amount of mileage they cover. I had forgotten this. Or, maybe I simply never realized it before because I was never physically or energetically limited in my previous events. I never had to measure anticipation, nervousness, joy, relief, or pride in terms of energy depletion. They were simply emotions that existed and and passed. I only ever felt the physical toll of doing an endurance event.

Before CRPS, that is. 

I woke up this morning expecting my quadriceps and calves to be sore. I expected my glutes to be sore. I expected my back and arms to be sore. But, my muscles aren’t sore. At all. (I told you I was prepared!)

Instead, I woke up with my brain cloudy. It’s hard to remember my thoughts. My right leg is feeling very CRPS-y. Deep, bone crushing pain. Superficial burning, crackling, shiny skin. Daggers driving into the joints when I move it. It is turning colors and going cold. Fuck. Still, I’m not going to officially call it a flare.

I tried to go back to my “normal” daily schedule. I ate breakfast, drank some coffee, drank twice as much water as coffee. I went to the pool.

The weather today is crappy. Cloudy, humid, not hot enough to be hot, not cold enough to be cold. It’s the kind of day that would affect my leg anyway. My limp, worse than usual.

I hobbled over to an empty lane.

I put my left foot in. COLD. Shit. Ok. I’ll just sit here with only my left leg in the water for a while. I moved my left leg around. It was cold, but ok. Maybe just a short, easy swim.

I put my right foot in. Slowly. Very Slowly. It felt as if I was easing my leg into molten lava. I kid you not. It’s a weird and incredibly painful feeling. The water was cold, and like, the density of… you know… *water*.  My left leg and my brain were on the same page about these things. But my right leg, burning, being crushed by the pressure, was convinced I was immersing it into lava.

A year ago, I would have forced my right leg to get on the same page as my left leg and my brain. The same page as reality. But a year ago, I’d had about 13 fewer flares under my belt. And now, my goal is to try to figure out how to push myself physically and recover before I go full-flare.

I pulled my legs out of the water. A swim wasn’t going to happen today. And I have to be ok with that. I can’t call myself names (lazy, unmotivated). I can’t tell myself that I’m just making an excuse for not wanting to swim.

It’s true that I didn’t want to swim. I rarely want to swim. I do it because it is good for me. The reason why I didn’t swim was because my right leg was being crushed and incinerated by molten lava (aka 77 degree chlorinated pool water). In order to continue trying to intercept the flare, I had to listen to my leg this morning. I left the YMCA. I went home, ate, took my medicine, and went back to bed.

I’ll try to swim again tomorrow.

It is frustrating, beyond frustrating, to have my life’s activities dictated by the lower half of my right leg. But, if I want to continue to slowly chisel my way out of this CRPS prison to engage in activities that temporarily allow me to feel a little bit like my pre-CRPS self, I have to be willing to crawl back into my cage. I have to deal with the aftermath.

 

 

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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Unrecognizable

At the beginning of the week, I spent time with my best friend of over 20 years, her husband of over 10 years, and their 6 month old baby.

These are my people.

I don’t live close to them (I don’t live close to any of my close friends). But, my friend and I traveled extensively together in our 20s and at various points in our lives we lived together. Her husband is exactly what the husband of your best friend should be: a completely separate person, but an extension of the love of a friendship.

I am truly happy when I am with them. I am not guarded. I am able to truly relax and admit who I am. And they accept me.

We talked about books we’ve read, scientific research that interested us, talked about North Korea (I don’t know why, but all of my close friends and I have always been fascinated by North Korea. It’s a thing. A tie that bonds, I suppose.), we ate Mexican food, we made Alexa turn the lights chartreuse and say ridiculous things, we watched episodes of The Dead Files on Netflix. We didn’t do anything “exciting,” just the regular stuff that decades long best friends do.

And the baby. So full of joy despite an impending tooth or 26. He is learning to sit up on his own from laying down. Sometimes gravity gets the better of him. He thinks my nickname (“JayPea”) is hilarious. He liked when I explained sciency stuff to him. He loves Harry Belafonte, but his absolute favorite song is Hey Ya by Outkast.

I temporarily felt like my old self again, even though my CRPS didn’t stop for a second. The visit renewed my hope that I could feel at ease, almost normal, concurrently to feeling everything that comes along with CRPS. If I have the right people in my life…

Before I left, my friend took a few photos of me with the baby.

Today, I went back to my regular swim schedule at the YMCA. Feeling renewed, hopeful, and happy. I talked to one of the regular swimmers, who possibly the closest thing to a friend I have at the Y. I told her about my visit and I showed her the photos of the baby, including one of me holding him.

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I didn’t tell her that *I* was holding the baby; I assumed that would be obvious.

“Wow!” She said, “your friend is really pretty!”

“Uhm… That’s me…” I said.

“Oh, huh. I didn’t even recognize you.”

I mean… I wasn’t wearing a swimsuit, and I was wearing a little bit of make up… But really? She didn’t recognize me?

She has seen me roughly three times per week for over a year. In all that time, I guess she has ever seen me truly smile.

Am I really so miserable now, in my daily life, that I am unrecognizable if I am happy?

 

On Giving Up: Human Nature

I am astonished when people say to me, “I don’t know how you keep going. I probably would have given up by now.” But, I think I am actually pretty normal in my reaction to my accident and determination in recovery.

You see, as the result of one accident, most people won’t lose their home, their (supposed) life partner, their ability to work, their financial security, their independence, their ability to lead an active lifestyle, their ability to enjoy simple pleasures like a walk on a beach or a movie in a theater, their ability to do simple tasks easily (like grocery shopping or open a refrigerator door), much less every aspect that once defined who they were.

I used to say that I have lost everything because of this accident. I have come to realize that this is untrue. I still have the love and support of my parents. I still have a handful of wonderful friends who are gentle and help motivate me. And I still have my bike. 

So, since most people won’t experience this degree of loss, they can’t imagine what they would do if they were in my “situation.”

It is overwhelming, for certain. It is a scary, for certain. I have very dark days, for certain. I have trouble imagining a life for myself in the future. I don’t have any of this figured out yet. 

What does it mean to “give up” anyway? I know people use it in phrases that are meant as flippant hyperbole reiterating a platitudinous construct meaning “You’re in a tough spot in life. You’re working incredibly hard. Keep it up.” But, let’s think about giving up in terms of the actual words.

Typically when we give up on or quit something, we move on to some other option. But, what happens when you have no other option? When there is no other place to go for safety? When there is literally nothing else you can do? Giving up is a luxury. Giving up is lot more difficult than just an abstract notion of moving on.

Even in my darkest days, I can’t conceive of the only way to truly give up…

As long as I am alive, giving up is simply not possible. I’m not saying that because I think I am some super-human, super-motivated, super-driven CRPS “warrior” martyr. No. I’m not. I, just like everyone else, am simply governed by regular old human nature.

I tried for the first months, out of denial and sheer desperation, to cling to my life as I knew it. Everything (apart from the love of my family and some very dear friends) gradually fell away. It is the loneliest place to be.

I was lost. I still am.

Here’s the catch though: CRPS isn’t life-threatening, and yet I will have it for the rest of my life. That means I have (presumably) over forty more years of this. I don’t have over forty years’ worth of tears. I can’t stay in bed in pain with a laptop on my lap for over forty years. I can’t have almost no social interaction for over forty years.

The permanence is unbearably daunting. I don’t have a choice; I am forced to face it, confront it, and deal with it. Knowing that this isn’t going to go away (on its own or possibly at all), I said what any normal human would say in my situation.

Fuck it. I’m far too young for this shit. I gotta try to figure it out. 

And so, I am doing what any normal human would do in my situation. Day by day, I keep trying to salvage scraps of my life. Because I have no other option, including giving up.

Giving up isn’t human nature.

Anthem: Sometimes, a song

I’m fired up

and tired of the way that things have been…

Don’t you tell me what you think I can be

I’m the one at the sail;

I’m the master of my sea…

My luck, my love, my God, it came from

pain.