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/

Advertisements

2 thoughts on “Is Anything Wrong?

  1. I was thinking of you recently, along these lines. I think what must be really frustrating is when people see you doing so much more than anyone else would be doing with your same condition, and so they think you’re fine, or that you’re better than you really are. They don’t see how much of a struggle it is to do something like go to dance class, how you know you’ll pay for it in pain and you power through it anyway. Because that’s who you are, but they don’t know that. It’s such a double-edged sword, to be strong in situations like this. I totally understand the conflict and frustration.

    Liked by 1 person

    1. ❤ Yes. Thank you… and the fact that when I "go to a dance class," I'm not actually *doing* the combinations, much less doing the entire class, and even less going to my same old classes. I do what I can do within limits dictated by CRPS. …because I have decided to fight to preserve what I can of my psyche.

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s