Is Anything Wrong?

I’ve been trying to figure out why I get so frustrated with people who don’t/won’t/can’t understand exactly how debilitating CRPS truly is.

“Have you seen the one-legged ballerina?” “You are so talented!” “Look at you! You look great!” “Just get a job working from home.” “You just have to fight through the pain.”

I hear it whenever I go anywhere. Usually from strangers, sometimes from people who knew me a very long time ago. And the frustration builds and builds, turns into anger, and then, then next thing I know, I’m muttering “fuck you” at some lady noodling around the deep end of the YMCA pool.

Here’s the deal. I am very angry because CRPS has imprisoned me. I try not to take it out on other people. I really do try. But when people, who have no idea the magnitude of everything I’ve lost in the past three years, try to give me some watered down mixture of a Tony Robbins seminar, Jesus loves me, dietary advice, and a hang-tough-keep-your-chin-up pseudo-motivational speech, I literally feel like I’m going to lose it. Naw, who am I kidding? I do lose it.

I have taken a little time to examine why I bubble over, why this nonsense bothers me so badly. Two key things tip the balance: I am naturally a real go-getter (for lack of a better word… the meds, you know…), and I have been fighting all of my life to prove who I am.

For everyone who knew me, I was the motivator. I was the inspiration. I am a dreamer, and a doer. I am a planner. I set and attain goals. I always have. Don’t believe me? Ask me about the first time I moved to New York City.

I was 24. I had a very good job in Santa Cruz, CA, but my life was stunted. I wasn’t dancing as much as I wanted and the opportunities for dance and art were hard to come by. I needed to change. I knew I needed a bigger city, preferably on the East Coast to be closer to my family. Boston? Philly? DC? Fuck no. I wanted New York. And how should I get there? Pack a UHaul? Buy a plane ticket? Fuck no. I took a train (that trip in and of itself was an adventure to write a book about).

But, here’s the kicker about my personality: as much as I wanted to just go the second I made the decision, I waited. I planned.

I looked at my finances. I figured out how much it cost to move, and to live. I set a timeline and stuck to it. In just under seven months, I added just under $10,000 to my savings account. Actually it was a short-term high-yield investment account, but whatever.

After giving a month’s notice at my job, and clearing it with my boss, I contacted four companies in New York City, with which we did business. I organized a sublet for when I arrived. While on the train, I finalized a schedule of job interviews.

I arrived on a Saturday. I had interviews on Monday and Tuesday at 3 different companies. I was offered all positions on the spot. On Wednesday, I negotiated my salary at the job I thought suited me best. They wanted to offer me my same salary that I was making in Santa Cruz. I agreed that would be a good base, but I wanted a bonus for hitting certain goals. The final agreement: my same base salary plus $500 per week that I met my goals (which I always did), medical, dental, and three weeks PTO. I started my new job on Thursday.

And that, ladies and gentlemen, is how you fucking do it. And the thing is, this is just one example from my life. Because, you see, this is who I am.

So, like, my issue really isn’t something as easy as finding motivation, or not eating gluten. My issue is finding a way to manage an intolerable, incurable medical condition without relinquishing who I was when I had my accident. When some unaccomplished nobody busy-body decides to pull the Tony Robbins Jesus bullshit on me, my mind races and spins because they really have no idea who they are talking to.

And I know I’m not some great gift to the planet: there are plenty of things that I have not achieved in my life, plenty of dreams that did not come true.

I sound like an asshole braggart, but being self-motivated and being able to start over and re-create my life are fundamental aspects of who I am. And then, I get these small town hallway preachers, thinking they have some great wealth of wisdom to impart…

I usually just stand there and take it. However, I’m beginning to find that standing there and taking it is in some way taking all of my accomplishments away from me. It makes me doubt everything that I’ve ever done. It makes me think that maybe I really am the unmotivated weak minded kid they think I am… But no. I am still a magical fucking unicorn. I am still me. Or am I? It’s confusing. It’s frustrating.

And peppering this struggle, compounding the complexity, is the idea that I have something to prove. I’ve spent most of my life fighting prove that I’m “good enough.” I’ve had to prove I’m good enough to be on the junior competition team for dance, prove I’m good enough to have a solo dance, prove I’m good enough to be on the math team in high school, prove I’m good enough to study chemistry in college, prove I’m good enough to tutor chemistry, prove I’m good enough for higher level jobs, prove that I’m good enough to run my own business… I spent my life constantly studying and learning, constantly working harder in order to maintain a level of continual improvement.

And now, now that the bottom has fallen out of my life, in some sick twist of fate, I must prove that I am, in fact, not good enough. I have to prove that I am actually crippled by CRPS. I have to prove that I’m not simply lazy and unmotivated. I have to prove that it isn’t just a matter of closing my eyes, rubbing a bejeweled bottle, and making a wish to a magical genie. I have to prove that what I am going through is real. I have to prove that I am someone I don’t want to be. I have to prove something that I, myself, have not yet fully accepted to be true. (Although, it is most certainly true.)

So maybe that is what finally tips the balance from frustration into anger. I am at the very lowest point in my life, struggling to find a way out (preferably while maintaining my sanity and some semblance of a sense of self), and yet the nosy big-mouthed passer-bys jump to conclusions and don’t fucking believe me.

Opinions don’t matter, I know this, but I have to fight everyday simply to carry on in a world that used to be mine for the taking. I must now spend every second of every day fighting…

It sure would be nice if, just for a moment, I could relax and let down my guard. If, maybe everybody in the world could somehow know, trust, and believe I am already doing everything in my power to get “better,” and not stop to give me unsolicited instructions about how I should live my life.

Is Anything Wrong
by Llasa De Sela

I used to say
I’m ready show me the way
Then another year or two
Would pass me by

Is anything wrong?
Oh, love, is anything right?
And how will we know
Will time make us wise?

People outside
They know just what to do
They look at me
And they think that I know too

Is anything wrong?
Oh, love, is anything right?
And how will we know
Will time make us wise?

I’ve found a home
Now will life begin
I can wait another year or two
But not one moment more

Is anything wrong?
Oh, love, is anything right?
And how will we know
Will time make us wise?

http://songmeanings.com/songs/view/3530822107858773679/

It’s My Anniversary…

Six o’clock came and went this evening, almost without my knowing…

But now, it has officially been three years since my freedom was taken away from me.

It has been three years since I was able to walk without looking like a troll. Three years since I was able to run. Three years since I was able to jump. Three years since I was able to stand without pain. Three years since I was able to sit without pain. Three years since my right leg was my “strong” leg. It has been three years since I slept peacefully through the night. It has been three years of struggling, every second of every day (and night).

For three years, I have been a prison of continual pain, weakness, confusion, frustration, fear, anxiety, and helplessness. Constantly guarding my prison are armies of doctors, lawyers, and the occasional judge. Loving family and friends bring me snacks and news from “the outside.” I could go on with this analogy, but I’m sure you get the point…

So yeah, tonight is the anniversary of the fall that has stolen my independence and forever changed who I am.

Vignettes: Undisclosed

If it looks like I took a trip to New York one afternoon, went to an undisclosed location for an undisclosed purpose, and flew back to Orlando the following evening, then it’s because that is exactly what happened. The trip was grueling and more taxing than I am allowed to discuss. But, as always, I saw a few things that I allowed to soften my ever-hardening heart.

I also found this brilliant rendition of GNR’s Welcome to the Jungle by Postmodern Jukebox

Making these little videos continues to help distract me from the pain and every impossible thing that is going on in my life.

Enjoy.

On What It Means When I Say “I Can’t”

The term “I can’t” has taken on multiple meanings. Many people nowadays use the term to mean things like: “I don’t want to,” “I actually can, but it is difficult,” and the new standby “ugh, I can’t even…”

So let’s start from the beginning.

Despite modern colloquialisms, the word “can” has a very simple but specific definition: v. to be able to.

And, according to the grammar rules of the English language, adding the word “not” to an auxiliary verb negates it.

By sticking the word “not” at the end of “can,” we get “can not,” or “cannot,” or “can’t.” The “not” negates the “can” and thus the meaning of “can’t” is: not to be able to.

It’s really quite simple. I really don’t know why it is so difficult for the majority of people I encounter to grasp the concept of “can’t.”

I honestly don’t know how to say it any other way.

When I say, “I can’t,” it means, literally, I fucking can’t.

Waking Up in the Afternoon

By now you know that I have to take a bunch of pills throughout the day, all of which make me fall asleep.

Waking up in the afternoon is often more difficult than waking up in the morningtime. For example: today. Right now.

Coming out of my midday fog, I find myself in a cool, dark room on a hot, sunny day. I am emerging into a dreamlike reality, watching an obscure Youtube video that all too perfectly mimics my current mental state.

(I am not completely unconvinced that Lhasa de Sela isn’t one of my spirit guides.)

Here Lhasa is, lulling me out of my lull, singing my love-life story, so honestly and so sweetly, in my preferred 6/8 time signature.

Maybe I am still more dreaming than awake.

A low camera, never quite focusing on my beloved storyteller, pans the on-looking crowd dressed in scowls, judgmental half-smiles, and dark clothing. Nearing the end of the cameraman’s circle of judges is a photographer. Not looking too unlike myself before all the sun, she smiles more truthfully than the others and is the only one in the crowd who bothers to try to sing along. She manually advances her film. She appears to be shooting with what I swear is a Canon AE-1 , which just so happens to be my first and all-time favorite SLR, trumping even the modern day ultra-uber-DSLR’s.

This video is all too similar to something my brain might conjure.

It is hard for me to know where a dream ends and real life begins again, especially in the afternoons. Familiar music via Youtube usually helps bridge the gap.

 

Uh Oh…

So there I was again. At the goddamned YMCA for my daily swim.

Some Jesus freak, who first Jesus’d me back in December, stopped me in the hallway this morning (by physically blocking my path to the pool), in order to tell me how much “better” I look. And then, she proceeded to have a great idea: “You should open your own ballet studio!”

Go ahead and twist that knife the Universe shoved into my back, why doncha?

Obviously, she has never been a business owner, or worked tirelessly, trying to keep a business afloat.  Let alone tried to do it while crippled, in unyielding pain, and on drugs. “Whatever.” I grumbled at her, “You can see that my leg is shaking. I have to get in the water.”

I walked away.

I limped out to the pool deck.

Some overly cheerful aquaciser, full of saccharine and straddling a noodle, yelled out to me “I like your shirt!” 

I was wearing whatever shirt I slept in. I looked down: a wrinkled  green tee that says “ACHIEVER” on it.

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It’s a reference to The Big Lebowski. It’s a reference I knew this lady didn’t get. I scoffed. “Yeah, thanks.”

She then chimed (in a sing-song sounds-like-someone’s-got-a-case-of-the-Mondays tone of voice),”Uh oh, looks like you’re in a bad mood today.”

Oh no, she di’nt… “I’m in a bad mood every day,” I snapped back.

She then tried to argue that I am not actually in a bad mood every day because I don’t look like I’m always in a bad mood…

I kept walking, but started uncontrollably muttering a bunch of stuff under my breath walking to my deck chair. I probably bore an embarrassing resemblance to  Yosemite Sam. “As if I’m supposed to be in a good mood for you” … “Who are you to argue with me about how I feel!?”… “You think I want to come here? That this is fun for me?” … “How dare you judge me based on how you think I look!”

And punctuating the half out loud rant: a hearty “fuck you, lady.”

She may or may not have heard me.  I don’t think I care.

Ballet Series: What’s In My Shoe?

This is a ballet technique shoe.

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There really isn’t much to it. Canvas, some elastic, and two small pieces of leather for the sole.

Needless to say, there is no support in a ballet technique shoe. A dancer’s feet and ankles must be incredibly strong. The foot and ankle must always maintain stability. During some steps, a dancer’s ankle must absorb up to 14 times her body weight.

So, what’s a dancer to do when her foot, ankle, and lower leg stop functioning properly? Crying and pouting are certainly always valid options, but they don’t help rebuild someone who has become a partial person.

Dancing has been my identity since I was in preschool. In my tweens, the only disciplinary threat my parents ever gave to me was to “take away” dance. In a seemingly overly dramatic retort, I cried, “I would rather die than stop dancing.” I never stayed out late, I kept up my grades, I did chores, I maintained peace with my brother, I never missed a dance class. Not dancing was not an option. It still isn’t. Despite being crippled by CRPS, I have to maintain the hope that I will eventually find a way to accommodate my limitations. 

My right foot is now completely flat. The muscles that hold up my arch simply don’t work. I wore an arch support insert inside my sneaker when my doctor told me to try to wear a shoe on my right foot (predating the boot that has become a semi-permanent fixture to my life).

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It occurred to me one day a few months ago, during a brief moment of clarity, that if I could put the insert into a sneaker, maybe I could put the insert into a ballet slipper.

I have roughly 15 ballet technique shoes that all once belonged in matching sets of twos. Over time, they all ended up in a bin, hibernating under my bed. Some have elastic sewn properly and neatly in an X across the arch. Some have no elastic. Some have elastic sewn in a giant loop that I’d cross and bring under the bottom of the shoe. Some have two half sewn elastic pieces that I’d tie in a knot across my ankle. The elastic sewing situation depended solely on how lazy I was at a given point in time.

For my CRPS foot, I chose a shoe with the elastic in a giant loop.

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The insert fits perfectly inside. It cushions my heel and keeps my arch lifted.

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…and then there is the brace. A friend casually commented to me recently about my “cute black sock.” Well, that “sock” provides a great amount of stability to my ankle.

Take off your shoes and stand on one leg. Go on, do it.

Do you notice how there are lots of tiny adjustments in your foot and ankle as you maintain your balance?

Well, these tiny adjustments do not happen in my right foot. None of those little muscles function on their own. I do countless exercises with my therabands. I have been working on a balance board for over two and a half years. I swim. I ride my bike. I do everything that I am supposed to do. And still. Nothing.

If I want to attempt standing on my right leg, I have to have my body perfectly aligned, and then I just kind of hope I can keep myself upright. The one thing I can rely on: my leg and ankle will give out on me without warning.

So, I wear a brace in an attempt to maintain stability that my ankle does not provide for itself.

…and then I attempt to “dance.” This set up is not comfortable. Nothing about CRPS is comfortable. Then again, nothing about ballet is comfortable either.

I have no interest in comfort because I am (safely, slowly, steadfastly) fighting to keep a promise I made to myself a very long time ago: never give up this fundamentally crucial piece of who I am.