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.”

Fully Favorable

My final hearing for social security disability was on June 14. It was one of the most humbling and humiliating experiences of my life.

On Tuesday of last week, I received a letter in the mail. The letter was dated June 20, 2017.

Notice of Decision – Fully Favorable

I live in a conservative state. I had a conservative judge. My attorney prepared me to wait longer than two months for the judge’s decision, but my decision letter was drafted an unprecedented six days after my hearing.

My attorney called me to talk about the stunning speed. He asked me if it would be alright if he submitted my case (stripped of personal information) to a database that would help substantiate other RSD/CRPS sufferers’ disability cases. Of course it would be alright. He also filled me in on the “next steps” and gave me the contact information for a Medicare specialist.

So let’s recap: my social security disability was approved in record speed, I will be able to have healthcare coverage, and my case will be an example to help other people suffering from CRPS.

I’ve been asked about how I *feel* about this. “Are you happy?”

My *feelings* are still marinating about this very long, very stressful process. I’m pretty sure my emotions are going to max out as a sense of relief. It will be nice to have one area of my life become a little more certain.

But, “happy?”  No. Happiness is not in there anywhere.

You see, I am trying to collect social security disability out of sheer necessity, but I am not trying to be disabled. The contrary is true. I don’t want to be disabled, and I am dedicating my life to trying not to be disabled. I do not want to have to collect social security disability. I would rather have the ability to have a job.

I would be happy if I wasn’t disabled. I would be happy if I didn’t have CRPS. I would be happy if I was able to work an actual job. I would be happy if I could run, if I could jump. I would be happy if I could return to my old, regular, joyful life… 

Logically, I knew I certainly qualified, and I knew I certainly needed this decision to come through. Logically, I should feel validated, at the very least. Yet, logic aside, the decision, and the unprecedented speed of the decision, was a punch in my emotional guts.

I mean, there was no hesitation in ruling that there is no job on the face of the planet that I can successfully perform. I’m not kidding. The judge’s decision is substantiated over fourteen pages, single spaced, ten point font, and a sentence just before the final concluding paragraphs reads: “The vocational expert testified that there are no jobs said individual can perform.”

Jesus. Fucking. Christ. I seriously cannot believe this is real life. I know it’s true. I know I have CRPS. I know I am completely incapacitated by this condition. But…

Seeing it in writing, written by a judge, popped whatever was left of my lingering tiny bubble of denial: this is real. I am disabled. And that most definitely makes me sad, not happy.

 

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…”

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/