Ballet Series: The Boot

CRPS doesn’t seem to be going away any time soon, so I have to find ways to continue to live my life. Since March, I have now taken five beginner ballet classes at four different dance studios in New York City, from two different teachers.

My foot in my boot, my cane in my hand, I hobbled up to the registration desks. “I’d like to sign up for class…”

Nobody ever batted an eye. I simply registered, went to the studio, folded my cane, carefully removed my boot, strapped my foot into it’s brace, and proceeded to stretch and warm up for class. It is a very relaxed, natural process.

But, if I casually mention taking a ballet class to a friend or family member, I’m met with a look of confusion.

“Aren’t you in a boot?”

Yes. Yes, I am. However, I am no longer acutely injured. The boot helps maintain stability and provides compression to my foot. It also (supposedly) is helping to correct the lateral rotation of my lower leg.

The deal is that I need to support my ankle and arch, but immobility is very bad for CRPS. It is a fine balance. I need to support my ankle and arch in order to prevent injury while retraining my lower leg how to move.

“Doesn’t it hurt?”

Yes. Yes, it does. It is excruciating, in fact. However, the pain from CRPS is not indicative that anything is wrong (apart from CRPS itself…). The pain is a trick. The pain might never go away. So, because staying inside my parents’ house, crying because of loneliness and horrific emotional and physical pain is a completely unacceptable lifestyle, I must to find ways to accommodate CRPS and work through it.

Desensitization is a major part of my therapy “homework.” I am supposed to surround the pain with pleasant thoughts. I am not supposed to fear or wince at the pain.

My happiest happy place is in a dance studio. I take only from teachers who know me well and are familiar with my injury. They help keep me calm. They encourage me, but don’t push me beyond my physical limits.

Going back to ballet is probably the most empowered I have been in more than three years. My doctors trust me. My instructors trust me. I don’t trust CRPS, but I trust myself.

boot

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Vignettes: Neurologist Check up and Sixth Sympathetic Nerve Block and Ballet

It’s funny (not really), how all of this has become normal for me. Traveling a thousand miles to see my doctors. Having a large needle threaded through my spine.  No big deal… Except, it is a big deal. Except, I can’t complain because it is what I have to keep doing at this time.

My neurologist check up went… well… like they usually do… I was in extreme pain from my trip. My leg was having a full-blown dystonic meltdown like a tired, hungry, spoiled, obstinate 3 year-old child amid temper tantrum hysteria. The neurologist didn’t like that very much.

He wrote a new prescription, increasing my dosage of Lyrica. He noticed significant visible atrophy in my right lower leg. He measured around both of my calves. My left was just over 13″. I couldn’t bear to look at the measurement of the right. He told me to keep swimming. He said wanted to see me again in another three months. Awesome.

And the nerve block. All of my favorite and familiar fellows from Columbia’s Pain Medicine program moved on over the summer. I was at the mercy of a new crop of fellows. The sympathetic block procedure went very well. Under the tutelage of my beloved doctor, the unfamiliar new guy performed beautifully. Another one for the hall of fame.

But getting to this point was a bit of a struggle. The appointments happen in three phases. The third is the procedure itself. The first: Check-In and vitals taking. Everything normal. Fine. The second: IV connected to a bag of saline solution (you know, just in case…). This is where there was a bit of… uh… a hiccup. A big bloody hiccup.

By this point, I have zero fear of needles. I don’t really care about seeing my blood. I don’t like it, but I’m not squeamish that way. Or at least I didn’t think I was. I was ready. The new guy asked me to show him my hands so he could see my veins. I raised my eyebrow because, like, the veins in my arms bulge and don’t need close inspection. I told the doctor, (‘he’s new,’ I told myself, ‘I’ll go easy on him’) about my deal with his predecessors about using my elbow vein.

I don’t think he was expecting a special request. I inadvertently threw him off his game.  He struggled getting the bag openedish and left the room with the bag, tubes, and pole. Uhhm? Hello? Goodbye? A couple minutes later, he returned. I saw through his thin veneer of feigned confidence. I sat still, still confident that everything would be fine.

He placed a paper towel underneath my elbow. Whatthefuck? I decided to force my attention away from the obvious intrusive premonition.

‘Whatever,’ I quietly consoled myself, ‘maybe it’s just his thing.’

Nope. Not just his thing. This guy had no clue how to start an IV. The “little pinch” somehow resulted in a massive leak from my vein. The flimsy paper towel was useless. Blood poured out of my elbow. I stayed still and quiet and breathed as calmly as possible. If I freaked out like I wanted to, I knew he’d become even more rattled. He gained control. I felt lightheaded. After he cleaned most of my arm (wiping, wiping, wiping), he couldn’t figure out how to open the IV to allow the saline to enter my bloodstream. Instead, what was left of my blood traveled up the tube.

An angel, in the form of the technician, entered the room to help me into the procedure room. She looked at my curiously bloody elbow. She called my doctor over. “There seems to be a lot of blood backing up in the tube.”

I couldn’t hold myself back any longer. “I think that if someone would just open the IV, the flow of the saline would push the blood back into my body.”

“The IV isn’t opened?! Oh! Of course. There. Is that better? That’s better.”

I prayed to baby Jesus, Buddha, and Benny Goodman, “Please, please, God, don’t let that guy be the guy threading a needle through my spine. Pretty please?”

He wasn’t. He left the room. Halle-fucking-lujah.

The doctor who performed the procedure was incredible. And that is really all that matters. It’s funny (not really) how I don’t care if I almost bled to death, so long as my leg is warm, stops hurting, and shaking for a few days.

The bright spot in my trip was, of course, a ballet class. The teacher I’ve been taking from, Kat, was out of town. I looked at the various schedules of the various studios. Another one of my favorite teachers, and friend, Jamie Salmon, was teaching a beginning ballet class at Broadway Dance Center. (Her class was the last class I had taken before my accident. Peridance. June 13, 2014. It was a Friday.)

I went to the barre. I stretched. Into the room slumped my all-time favorite accompanist. Vladimir. He has been playing for classes, around The City, as long as I can remember taking classes in The City. At least 20 years. I smiled and cried a little bit. I get so nostalgic.

The class was crowded. Jamie didn’t see me. Halfway through barre she approached me. “Pull up even more with your standing side,” she rubbed the back of her fingers along my oblique abs. I was standing on my left foot. I was able to make the correction. “Good girl.” She smiled and moved on.

But centre was, as it is now, a struggle for me. I am getting better at merging what I can do with what I can’t. But everyone was messing up the timing of one combination. I wasn’t the only one struggling. She stopped the class and said, “It’s not that it was not musical… but it certainly wasn’t what I’d call musical.” Most of the class snickered quietly. I guffawed.

In a half-whisper half-exclamation, if that’s possible, “Jenn!” She was beaming. “I’m sorry, I just can’t wait until the end of class to hug you.” She came to me and embraced me with the warmest, most loving hug I’ve received since Kat. Then class continued with my usual flubbery.

After class, in the hallway, Jamie and I talked, catching up, for about a half hour. She bragged about me to other bystanders. “Jenn, religiously came to my 9 am pointe classes. She helped me get it up and running. Not many people thought a 9 am hour and a half pointe class was possible.” She laughed. It was, hands down, the best pointe class in the city. I held back a tear knowing that I will probably never dance on pointe again.

The next class had begun. I looked in. Holy shit. Sascha Radetsky was teaching. At Broadway Dance Center. We made eye contact through the window. He cocked his head and smirked at me with the curiosity of a vague memory of someone from many many years ago. He kept demonstrating without missing a beat.

As you can probably imagine, going the class added much needed grounding comfort to another exasperating trip. I spent a total of just over two hours in the building, yet that precious time is the reason why I keep trying to fight this CRPS battle. Dancers are my people. Ballet is my home.

Always a Dancer

“Are you an athlete?” A voice asked behind me in the line to pre-board my flight to New York.

I turned around.

The voice was attached to the face of a woman, about my age (her own build athletic). Alongside her was her elderly mother (?) who was unquestionably spry despite the confines of a walker.

I took a second to react. I stood and stared, then blinked. The woman didn’t wait for me to formulate an answer.

“You look like a ballet dancer.”

I truly love how common it is nowadays for people, in casual conversation, to categorize dancers as athletes.

I half-smiled. “Yes.” Instinctively, looked down at my right leg in its boot. I shrugged, smiled fully, and said, “once a dancer, always a dancer.”

On How I Look: Part 2

When I am reticent, or change the subject, if you try to tell me how “fabulous” I look, please know: my reaction is not a humble ruse, feigning humility due to some antiquated social construct prescribing female demureness.

I am not being humble. I am frustrated by the ever-amplifying dissonance between the way you say I look and the unabating physical pain I continue to be in.

Your reaction to my appearance bores me. Uncontrite, I am not ashamed to openly roll my eyes, turn my back, and walk (er, hobble) away if the best topic for discussion that you can think of is how “great” I “look.”

I have already said most of this to you. Yet, still, you don’t seem to fully understand: I am not trying to “look good.” I am trying to reduce the amount and severity of my pain because, no matter how hard I try, this beautiful body of mine is betraying me.

I will break it down more simply; I will be even more blunt.

I know I have a “killer” body. I know I am lean and muscular. I know that my outward appearance seems to defy the passage of time. I know you are probably jealous (if you are a woman). I know you are probably turned on (if you are into women).

Of course I know. I’ve had decades of people telling me all about my terrific body: ballet teachers, boyfriends, bosses, random coworkers at vending or copy machines, construction workers on the street, men on trains, friends, and enemies. My body has been the subject of love, inspiration, lust, envy, and yes, even attack.

Of course I have a nice body. I was a serious ballet dancer for three decades. When I wasn’t dancing, I was hiking, swimming, playing, riding my bike 100s of miles. You say I was “lucky” to be born with a small frame. I say that I have cared for, respected, and protected my body my entire life (that is, by the way, my “secret” that you continually ask me about).

Of course I look good. Seemingly, all I do is work on my body. Virtually every moment of every wakeful hour of every day since my accident has been spent trying to convince my leg to function again, spent fighting this incurable CRPS bullshit that has consumed my life for over three years. I usually swim more than 10 miles per week; I ride my bike on its trainer as much as my leg will allow; countless exercises every day to strengthen my core and the deep muscles supporting my spine. So, yes, of course, I look “amazing” in a bikini. And oh, you betcha, my “ass” would be “smokin'” in a pair of jeans, that is if my leg would tolerate denim against its skin.

But, the truth is I am not achieving the sustained results that I desperately want. I keep working, without paying attention to my appearance because how I look does not matter.  I go days, sometimes weeks, without looking in a mirror.

I don’t care what I look like. Neither should you.

 

How Hard I Try

I’m holding on to many things passed
To anything that’s gonna change my memories back
I’m holding on to everyone good
To everything that’s ever been the way that it should
I’m holding on to things you said
Before you forgot what this love really meant to you
The words that I sent to you, never got into you

No matter how hard I try, try
No matter how hard I try, try
No matter how hard I try, try
No matter how hard I try
No matter how hard I try, try, try
No matter how hard I try

I’m holding on to many things passed
To anything that’s gonna change my memories back
I’m holding on to everyone good
To everything that’s ever been the way that it should
I’m holding on to things you said
Before you forgot what this love really meant to you
The words that I sent to you, never got into you

No matter how hard I try, try
No matter how hard I try, try
No matter how hard I try, try
No matter how hard I try
No matter how hard I try, try, try
No matter how hard I try
Hard I try
Hard I try
How hard I try
How hard I try

Involuntary

I wanted to swim this morning. My leg and foot were a little more obstinate than usual. About 11:00, I realized why. The daily Floridian summertime thunderstorms started early today.

Last night, I told you a little about the spasms starting again in my foot. At the present moment, these involuntary muscle contractions are making any kind of activity almost impossible.

And so I’ve been sitting here, with nothing to do, staring at my foot for a few hours. By this point, I have disassociated myself from my foot. It’s quite fascinating to watch as an outside spectator.

I’m not going to talk too much about how it *feels*… Let’s just say that it is more than a little bit uncomfortable… I have said in the past that this part of my CRPS feels like a boa constrictor is underneath my skin.

Admittedly, I am bored. And I’m pretty sure I have been staring at these slow arhythmic contractions in my foot for too long today, but it kind of looks like a strange, breathing, non-human creature. Possibly a sea creature… Or maybe it is about to hatch a new crop of gremlins

Here, I made a little video to show you. Captivating, no?

The Thrill is Gone

The nerve block is out of my system completely.

By now, I know the pattern well, the progression as the analgesic/steroid cocktail, injected into the nerve root between L3 and L4, fades and my autonomic nervous system restarts it’s infinite loop of misfires.

It starts with a twinge, a surge of pain. The lower fibula, about an inch and a half above the lateral malleolus. The surge grows into a zap. The zap is accompanied by a stab into the center of my ankle, right where the leg meets the foot. The zap grows into a strong blow, strong enough to take my breath away. The stab becomes a dagger, lodged. Then comes the dull ache up the inside of my ankle, inside the medial malleolus, stopping about halfway up my tibia. A tiny chainsaw across the outside of my heel. A white hot fire poker between my medial malleolus and my achilles tendon. Then, concurrently, the zip tie that cuts across the joint of my big toe, and the invisible fingers pulling at the top of my fibula.

I sometimes imagine my lower leg is on a giant’s buffalo wing platter. It’s spicy-hot, crispy-skinned, and dipped in cold bleu cheese dressing. And the giant picks up my leg and pulls my fibula away from the tibia and sucks the meat from between the bones. (Ironically, I have only ever eaten the part of chicken wings that look like miniature drumsticks; the two boned wings creep me out because of that weird meat between the bones.)

And when all the now all too familiar pain is fully firing, once the party really has really gotten started, my foot goes cold. Ice cold. It feels like it has been filled with sand. Cold, wet, gravelly sand from a northern California beach in the wintertime. It is difficult to move my foot and ankle. My foot feels heavy. My toe no longer lifts.

My skin turns a mottled grayish red color. My skin is shiny. And then the bees start stinging my leg. Not just one or two stray bees stinging in one or two places. There’s a swarming bee sting wedge. Just below my knee, extending medially and downward. The entire inside of my lower leg, down to my big toe, including the top and inside of my foot and ankle, but not including my second or other toes. Those lucky little devils are spared the wrath of a thousand non-existent bees.

Once the bees start stinging, I know what is coming imminently: the spasms and cramps. The spasms start as little twitches in my arch. A little shimmy in my calf. This is the stage where I am right now. The muscles in my foot are firing on their own. My big toe is pulling down and I am still unable to lift it up. It cramps and it hurts.

And I know what’s coming within the next day or two. And I know that from this point on, I have to closely, carefully monitor my activity. I have to time the amount of time I spend sitting, standing, moving.

The spasms aren’t just a case of the shakes. Every contraction sends an electric jolt up my leg and down into my foot. And with hundreds of contractions per minute… you get the idea.

And it’s funny. People always like to comment about my *mood*. In the days after my block: “it’s nice to see you in a good mood.” As the days pass, as the nerves return to their old tricks: “boy, are you in a baaaaaad moooooood!”

And it’s true. I am in a good mood after the block. Because I have some semblance of control over my lower leg, ankle, and foot. Because the knives and hot pokers have been removed, the tiny chainsaw stopped, the gunshot wound in my fibula healed, the cold sand drained, the bees stopped stinging, the electricity shut off, the aches are reduced, and there is no giant trying to pry apart my bones to get at the meat between my tibia and fibula. You’d be in a pretty good mood too.

And oh, jeez, you betcha you’d be in a bad mood too when it all comes back in full force.

The first time I went through it, it was a huge emotional roller coaster. The first relief of the CRPS-ity in over two years, since my accident, was pure elation. And Jesus, the let down, the depression, when it all came back after a few days…

Now that I am an old pro at these nerve blocks, I know not to be too happy. I allow myself to feel and enjoy the relief, but I know it will only last a few days. I dread that first surge. But I know it’s coming. And I know what will follow. And I know that this is the cycle that, like CRPS itself, is the infinite loop of my current life.

And this time around, I made a conscious effort to try to lop off the peaks and fill in the valleys. Yet, I still haven’t mastered maintaining a steady monotonous mood to placate the commenting onlookers and bystanders. Oh well. I can always try again next time.

So, yeah. There you have it. My nerve block is gone.

Most People

I heard it again today:

“How you continue to keep going is impressive. Most people in your position would have given up already, but you just keep going.”

Uh. Yeah. In case you haven’t already noticed, I’m not like most people. I’m not trying to impress you. I certainly don’t care what most people would do.

My reply was simple:

“CRPS isn’t quitting on me, so I’m quitting on CRPS.”