Vignettes: Fifth Sympathetic Nerve Block, Finishing What was Started, and More Ballet

I went back up to New York again last week.

The first order of business was to complete the unmentionable thing that was left unfinished a couple weeks ago. Can’t talk about it…

Next, was another visit to my pain management doctor for my next lumbar sympathetic block. The blocks only last a few days and taper off within a few weeks, leaving my CRPS back at the starting point. Remission from the blocks is starting to look like a very remote possibility.

Before the procedure, I asked my doctor more about the radiofrequency ablasion (RFA) treatment we had discussed several months ago. She said I was a good candidate, but without health insurance, the procedure “would certainly be cost-preventative.” She recommended that I continue having the nerve block injections, as long as they provide relief.

And then the procedure. It went well. “Another one for the Hall Of Fame,” my doctor said.  She told me that there was “just something” about the anatomy of my back and spine that lend themselves to consistently “near perfect” lumbar sympathetic blocks… Uhm… Thank you???

And I also made appearances at two ballet classes! I was able to do most of the barre, and about half of centre. I tapped out after pirouettes. And let’s be honest. I didn’t actually pirouette… but still… Just being in class, being with my favorite teacher, hearing the music, feeling part of something, released a bit of my pent up stress, and renewed my spirits immeasurably.

Then, because my leg was feeling OK from the nerve block, I made my way downtown to see Jordan Matter’s Dancer’s Among Us exhibit. Ironically, I my visit was during the last weekend of the exhibit. And, I was lucky enough to meet one of the “tiny dancers among us” who was visiting the exhibit with her mother.

“And oh, if you knew what it meant to me…”

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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.