Motivation and Accountability (whatever that means)

A new gym opened up in my area. It has lots of amenities including an indoor pool, sauna, and a steam room. It is cheaper than my discounted YMCA membership. I switched. 

After my swim yesterday, I went into the sauna. There were a few other people there besides me.

The sauna is co-ed. People go in clothed. It’s weird, but, apart from being clothed in a sauna, it’s not uncomfortable. 

A man started talking to me about swimming because I was in my bathing suit wrapped in my oversized towel. I told him that I’m not really a swimmer. Something possessed me (maybe the heat?) to tell this guy a little bit about myself, CRPS, and my recent life in general.

He is on his “weight loss journey” and asked me innocently with 100% sincerity, “how do you find the motivation? How do you hold yourself accountable?”

I was thrown by his questions. I couldn’t very well launch into the fact that for years misery was my primary motivator, so I took my time to think about my answer. It went something like this:

“The truth is that I don’t really think about ‘motivation’ or ‘accountability.’ I can’t say I even understand what it means to hold myself accountable, and I don’t know how I’d go about doing that. I guess my inner monologue isn’t a voice of psychobabble words I learned from somebody else… Sorry… I don’t mean that to be an insult… 

“My only “motivation” (if you will) is my rigid refusal to accept an unacceptable situation. And my situation is unacceptable. I can’t accept not being able to walk (even though I couldn’t walk for many months), I can’t accept living in my parents’ house. I can’t accept not having any form of social life. I can’t accept not being able to have gainful employment.

“Over time, I have taken stock of all of the things I cannot accept and balanced them with the things that I can accept in order to change my life. Because my life will not change (at least for the better) without significant effort on my part. I have to accept painful treatments. I have to accept the cyclical sine wave patterns of pain. I have to accept this pain always being in my life. I have to accept the mind-fuck that is CRPS. I have to accept the fact that every day, I wake up in a different body with different abilities. And, if I want to be considered “normal” I have to accept these things alone in silence. I’m forcing myself to get better about hiding my condition.

“I dread the first step every morning. I never want to get up. I always want to stay in bed. I consciously decided to make a habit out of getting out of bed in the morning because if I don’t, if I stay in bed when I am able to get up, that is the beginning of accepting the unacceptable. And by definition, if something is unacceptable it simply cannot be accepted.”

I recognize that my struggles are completely different than his, but he looked at me like he understood what I was saying, like what I said meant something to him.

We talked for a little bit more before I had to leave. The sauna became a little too sauna-y for me.

Walking away, I realized that more and more frequently people don’t look at me with pity. People have started to look at me with some other emotion in their eyes that I barely recognize: respect.

 

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Vignettes: Seventh Sympathetic Nerve Block and a Neurologist Check up

By this point, you know the drill as well as I do.

I went straight to the neurologist from the airport. The check-up went very well. He measured my calves, still noticing the significant atrophy of the right leg. This time, I looked. The right is 1.75 inches smaller than the left. I was shocked because I thought since I had been riding my bike so much, I would have rebuilt some amount of muscle. Apparently, if the muscle doesn’t fire properly (beyond crazy spasms), then the muscle can’t build mass. Go figure.

But that was where the not so good news ended. My doctor noticed that the temperature difference between my two legs was not as severe, nor was the color difference. The swelling was almost completely diminished. My right toenails still don’t grow at the same rate as my healthy left toenails, but they have started to grow again. These are all very promising signs.

The pain is still excruciating, and my leg still goes into spasms, but my neurologist looked me square in the eyes and said, “you might be one of the very few people who overcome CRPS.” He paused for a minute to let that news sink in. Then he added, “but you have to be patient. It is going to take years, so you have to keep doing what you are doing. I want to see you again in February.”

If would have skipped out of the office, were I able to skip…

The nerve block went without complication, I suppose. Needle through the spine, injection that feels like an alligator is chomping my leg and abdomen, recovery. I’m an old pro at this by now.

However, my pain doctor is not satisfied with the level of pain I continue to to experience on a daily basis. She wants me to have a lidocaine infusion a few days prior to my next nerve block, hoping that it’ll provide a one-two punch to the pain. Who knows. I’ll try almost anything she recommends at this point, if it means I might return to a normal life.

After leaving  my appointment, I stumbled upon a Downton Abbey exhibit. It appeared to be full of the costumes and furniture and history and all sorts of other secrets that only a reservation and $35 would reveal. I loitered looking in the windows for a few minutes and then moved along.

I also took a ballet class at Ballet Arts, from my favorite teacher, Kat Wildish. She was, as she always is, warm and welcoming and kept a close eye on me.

And I guess that was it…

Sort of…

This entire trip was tainted by the stench of a CRPS hijacked life. You see, the day before I left for New York, my dad went in for his regular health check up and ended up being immediately admitted to the hospital.

Despite his blood work and lab work showing stellar numbers, something was very wrong. He was admitted to the oncology unit. Something about the liver, possibly the bile duct. His abdomen was filling with fluid.

He needed tests and scans and tubes. He needed his family there to support him. And yet, I had to go to New York for my CRPfuckingS bullshit. I needed to get the treatment. I didn’t have the choice to stay and help comfort and take care of the person who has helped and comforted me the most in these past few years.

Leaving him in the hospital the night before I left broke my heart. When I came home, we still didn’t have any definitive answers, but he had been released from the hospital with the news that there would be no good news.

Meanwhile, my next appointments are scheduled for the first week in February. The lidocaine infusion, a check up with my neurologist, and another sympathetic block. Something has to change. Something has to work. I can’t keep living my life in the claustrophobic confines dictated by CRPS. I need to be able to be available to help my family. I am very scared about what the future has in store, and I know the difficulty will only be compounded by CRPS.

 

Falling Short

I’m tired.

And I’m tired of feeling tired.

I really do try to just keep on trying.

But. Fuck. I’m tired.

Life with CRPS is exhausting. Every nerve in my right leg from the knee down is firing at this moment. The buzzing is driving me crazy. The crushing internal pain takes my breath away. My toes are contorting on their own. My skin is on fire. My leg is heavy, my foot, a cinder block.  You know the drill. By now, we all know the story. Yet somehow, knowing about all of the same old bullshit doesn’t make it go away.

There are a million things I would rather do right now other than sit on my bed with my leg elevated complaining to you about (still) having CRPS.

I tried to ride my bike today. I had to stop. I don’t have the energy to go to the pool to swim. Besides, I know the water temperature would cause my leg to flare worse.

I would really like to meet a friend for lunch. Or, maybe take a trip to the beach to read books on the sand and swim in the ocean. All impossibilities right now.

I know these are the worst of days. I am days away from another injection. I am counting the days. I am counting on that day…

I know a bit of relief is just around the corner. I know my symptoms are at their peak right now. I know the edges soon will be smoothed down to make life with CRPS tolerable-ish again for a little while.

I just have to bide the time.

But. Jesus. It hurts. And I’m tired.

I’m really tired of this. 

 

On Who I Used to Be

When people ask me what I “did” before my accident, the quick version is that I was a photographer, graphic designer, dancer, artist. Faces drop and the conversation usually drifts to my recovery and how great I look.

I am rarely asked about who I was, and how my life, much less my outlook on my life, have changed since I became a prisoner to CRPS.

Here’s just a quick bulleted list of the types of things I did that represented who I used to be.

  • I wore a funny outfit and marched (danced) down Broadway in New York City’s annual Dance Parade. I was thrilled to be chosen to carry the banner for my favorite pointe shoe maker (Grishko). This parade was about two weeks before my accident (This photo makes me cry. I stare at my right foot, pointed straight ahead, stomping with a confident, unsuspecting stride).

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  • I used to love going on long bike rides in the mountains. I only recently joined Strava to keep track of my activity. And so, all that remains of the routes of my days spent riding hundreds of miles are two screenshots of screenshots of one metric century ride I rode in Reno back in 2009. 101.5 km, 4379 ft. of climbing. This is just one blurry example, but I suppose it will have to be enough to get my point across.

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  • I used to take flying trapeze lessons. This is a video of the first time I did my one-handed take-off. I practiced first before executing it with a catcher.

For some reason, I can’t find any videos of my trapezing when I had a catcher. It happened though. See?

  • I traveled to the Republic of Macedonia on a press trip. I secretly, but intentionally, followed steps taken by Allen Ginsberg in 1986 when he was invited to Struga’s annual poetry event. I went to Struga. I found his plaque.

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I even found the cafe in Skopje where he, as legend has it, emphatically stood upon a table and recited his poetry. I talked to the owner of our tour company about the possibility of an exhibition in the cafe of my photographs that I had taken during my trip. He delighted in the possibility and we started planning. Less than nine months later, I had my accident.

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  • I used to jump and do acrobatic tricks at the beach. Yeah, no, really. It was a thing I did.

… … … … … … … …

I… I can’t.

I’ve been working on this post for almost a year. I can’t keep working on it. I can’t keep it any longer in my drafts folder. I could go on and on and on about all of the wonderfully happy and fun things I did in my every day life prior to CRPS. I can keep inserting photos from trips I went on. Videos of fun things I did. It would never end because every day of my life was an adventure. I was able to make choices. I was able to choose to find the means to pursue anything and everything that would make me happy.

But now (as I’m trying and trying and trying to simply fucking finish this stupid post), I can’t help but look back on such happiness, such freedom, and become overwhelmed by grief. I’m sobbing as I type this now (inclusive of guttural utterances and an uncontrollably oozing face).

I used to love my life. And it was all taken away from me. And I fight every day to cling to the tiniest scraps of what is left of myself.

And I guess that’s all I really need to tell you about it.

I can smile at the old days
I was beautiful then
I remember the time I knew what happiness was
Let the memory live again…

I must think of a new life
And I mustn’t give in…

It is so easy to leave me
All alone with the memory
Of my days in the sun…

Look, a new day has begun

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.