On Focus

A random person tries to stop me in the hallway of the YMCA to discus ulcerative colitis, how necessary it is to lose weight in order to “keep it all inside.” A guy I dated once (literally once) approaches me to chat about all the fun things he and his new girlfriend are up to. A former lover materializes from the ether with the purpose of talking about himself, telling me how great he is doing. The fair-weather friends who sporadically pop into my life to tell me how *amazing* I look. Every emotion evoking thing on social media. Whatever nonsense the President is twitting about.

It is all meaningless chatter, trying to pull my focus, testing my mental strength.

I have to drown it out. I can’t pay attention. I have to protect myself. I must stay focused. 

I hate to say it, it sounds so harsh, but I’m going to say it: feeling anything about anything that doesn’t directly pertain to my goals is a waste of my energy.

A previous iteration of myself would have had *feelings* about these distractions. I would have been concerned about a stranger’s ulcerative colitis. I would have been jealous of the new girlfriend. I would have felt insecure and insignificant about someone else’s success. I would have indulged the platitudes. I would have gotten sucked into social media. I would have engaged in debates.

And the change was unprofound and happened without conscious thought. I think I simply realized one day that I don’t actually care. These people and things are peripheral to my life and don’t have any impact whatsoever on me or my goals.

These things do not affect me. These things can not affect me. I must stay focused.

 

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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?

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/

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.

 

Vignettes: Neurologist Check-up

In a good news/bad news situation, I always prefer to hear the bad first. So, this post isn’t necessarily written in chronological order. It’s OK. It doesn’t have to be. 

I always try to piggy-back my appointments in New York so that I don’t have to make multiple trips for singular appointments. Luck is usually on my side, but sometimes it just isn’t possible. Over the next five weeks, I have a series of three trips that I have to make for single purposes.

Last Monday was the first trip. A check-up with my neurologist. This is the first check-up I’ve had in nine months where I hadn’t had a nerve block just prior to the appointment. And hey, guess what? I still have CRPS.

I arrived to the appointment about 45 minutes early. Which meant I had to sit and wait. Which my leg hates. So, like a obstinate child, my leg decided to have a full-blown temper tantrum. By the time of my appointment, my leg was in a state of uncontrollable dystonia, making it difficult for my neurologist to fully assess the condition of my condition. But my leg was cold, and a different color, maybe not as swollen, blah, blah, blah. He asked where my worst point of pain was. Under the medial malleolus? Yes. And the center of the top of my ankle. And about two inches above my lateral malleolus on my fibula. And at the top of my fibula. And sometimes behind my knee. “Uh, huh. Yes,” he said, “those are the major nerve junctions…”

My doctor then reviewed the timeline of all of our visits in order to determine my progress, if any. We agreed that the medication and the pain management treatments help reduce some of the CRPS symptoms.

We had a discussion about baclofen. He asked if it made me sleepy. I said yes, but it, combined with the diazapam, actually controls the spasms. He raised his eyebrow as he looked at my shaking leg. I said I didn’t take my dose of baclofen yet because I fall asleep within 10 minutes of taking it. “Ahhh. And so you wanted to be awake for the appointment?” We laughed.

Then he quoted Voltaire. (I know I’ve said it before, but I will say it again. I love my doctors so much. Because they do things like quote Voltaire.)

“The art of medicine consists of amusing the patient while nature cures the disease.”

Yeah. Basically, he said there’s not much that he can do for me at this point beyond refilling my prescriptions. He was frustrated that he isn’t treating me. His frustration is with CRPS and how the disease has a mind of its own. He said that I should keep seeing my pain management doctor and come back to see him for another check up in 3 months.

While trying to fumble my shaking leg into its boot, I asked, “so, is this my life now, for the rest of my life?”

He looked down, he sighed, he looked up, he looked into my eyes. He said, “for now… CRPS takes hold, but at some point, sometimes, usually after many years, it decides to ease up. You first came to me four months after your injury. We were able to treat it early, and that can be promising.”

So yeah…

In other, happier news, on Monday evening, I took another ballet class! This was my second class since my accident almost three years ago. The first was last March, just after I’d had my nerve block. Monday’s class, even though it was the same “absolute beginner” class I’d taken two months ago, was exceptionally more difficult. My leg was not cooperating, and I had trouble standing on the right foot. Releve’s, and most certainly jumps, were out of the question. But who cares. I danced again. Sort of.

Seeing my teacher, interacting with the other students, hearing the brilliant pianist play for us, all helped heal aching pieces of my psyche. My teacher lives close to where I was staying so we rode the train together and were able to catch up. She gave me the best hug I’ve had in a while. I told her when I would be back in town again and that I plan to come to class again.

I was staying relatively close to Rockefeller Center, and I really wanted to see Jeff Koons’s new installation, Seated Ballerina. I walked down Sixth Avenue, past Radio City Music Hall, and wouldn’t you know it? NYU was having their graduation. Apart from the ensuing chaos, it was a pretty spectacular scene. Coincidentally, Columbia’s medical school was also having its graduation on the same day.

The hope that filled the city air that day was almost tangible.

My Past Became My Present: I Danced!

I danced!

Sort of. Here’s how it happened.

On Friday afternoon, while I was updating my doctors on the progress of the last nerve block, one asked if I had been able to become a little more active.  A little. Yes. I still can’t stand, sit, or pretend to be a normal adult person, but I can bend it more, my gait is less troll-like, my leg is getting stronger.

Every doctor I have spoken to agrees that increasing physical activity benefits CRPS patients.

Does this mean ballet? My doctors are all working to return me to dancing in some form. As my neurologist said about the possibility of remission at my last visit: “It may take forever, but it will happen.”

After the procedure on Friday afternoon, however, I hadn’t seriously thought a ballet class would (could) be in my immediate future.

I woke up Saturday and my leg was feeling good. I put on my boot, walked through the park, six blocks to the Westside YMCA, and went for a swim. Afterwards, in the locker room, I serendipitously ran into a couple two ballet dancers I’d known throughout the years. One was Harriet Clark. She was coming as I was going, but we stopped to chat. We talked about old friends. We talked about the good old days when ABT held open company classes taught by Diana Cartier. We talked about how to ‘move on’ from ballet. “I swim.” Harriet said. I smiled and laughed a little, “me too.” I wished her a good swim and was on my way.

Almost on autopilot, I walked from the YMCA on 63rd St. to Lincoln Center. I have consciously avoided Lincoln Center since my injury, but Saturday felt like the right time. I watched the fountain rise and fall. My spirits lifted. I felt peaceful. The David H. Koch Theater was advertising the Paul Taylor company. (Paul Taylor was the first-ever performance I saw in New York City. I was fifteen.) I stood and stared at the giant bronze Degas-esque hippopotamus. She is a new addition to the scene, but nevertheless, she looked down seemingly judging me with enormous eyes.

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Monday was an all around craptastic day. A blizzard was coming. My flight home on Tuesday got cancelled. The deposition, around which I had planned this entire trip, was adjourned. The hotel where I was staying was booked, and I could not stay an extra night to wait out the storm. I was on the verge of an emotional collapse.

I ate lunch at my favorite tea house, which is across the street from City Center. I was supposed to meet a friend that evening, but she texted that she had to cancel. Just as well, I thought, because I had to figure out how to get myself back to Florida.

I spent about 45 minutes on the phone with my airline, they rebooked me onto a flight Tuesday night, arriving just after midnight, Wednesday morning. Going to the airport in a blizzard would not be fun, but I had plenty of time. Everything was going to be OK.

I looked at the clock. It was the middle of the afternoon. I had no plans. I still felt overwhelmed. I did my ankle exercises. My leg felt very good and I had more range of motion than in the past two and a half years.

I looked at the clock again. I thought about what I would do if I was living my regular old life. Without a doubt, I’d go to a ballet class. I felt sad and tears welled. Then I thought about the past few days. My life used to revolve around dancing. There is no denying, it still does: I can’t go anywhere where I don’t see a dance acquaintance, where I don’t have a dance memory, I can’t look at a clock without thinking about which teachers have classes at that particular time. I can’t just keep swimming and pretending that everything is fine. I can’t keep crying about everything that I’ve lost. I have to keep trying. I have to keep fighting for it. It’s mine.

“Fuck it,” I thought,  “I’m going to find a class.”

[Let’s face it: I’m not going to be doing 32 pirouettes en pointe again any time in the foreseeable future. I am not able to relevé on my right leg. It just doesn’t work; it just doesn’t support me. Standing on just my right leg is wobbly. Jumping is out of the question. But, I am allowed to try to start, if I’m smart. I could at least try a basic class…]

Imprinted in my memory are various teachers’ various schedules. Monday evening. Who teaches where on Monday evenings?

One of my all-time favorite teachers, Kat Wildish, has a class on Monday evenings: Absolute Beginner, at Gibney Dance, which just so happens to be in the same building as the ABT studios where I used to dance years ago.

I had no dance clothes, but I did have leggings, ankle warmers, and an undershirt. I carry my technique shoes in my backpack at all times (to remind myself who I am, to remember what I’m working toward, and possibly simply out of habit). I have an arch support and a brace that prevents lateral movement of my foot that I wear when I am not in my boot.  The support and the brace fit inside of my ballet shoe, but only because I was too lazy to properly sew the elastics three years ago (see, kids, don’t ever underestimate the true value of a little time-saving laziness).

I walked a block to the 57th St NRQ train. Waited on the platform at the last car. Rode to Union Square. Got out at 17th St and Broadway. Walked up one block. It was a trip I’d made hundreds of times. It was as if I had transported myself back to 2002, going from the old Broadway Dance Center building to the ABT studios.

But then, remembering it was 2017, it occurred to me what was about to happen. I had been preparing two years, eight months, and twenty-five days for this moment. I’ve kept my body strong. I’ve done hundreds of thousands of ankle exercises. Hours of one-legged planks; one-legged pushups. Countless hours in the pool and on my bike going nowhere. Hoping. Working. Trying. Crying. Waiting. Wishing. Knowing.

I stood for a poignant moment staring up at the numbers 8.9.0 above the doors.

20170313_180339

I sighed and went in.

Everything about the building was the same as it was since the last time I was there: the “fallout shelter” sign above the door to the stairwell, the mandatory sign-in sheet with nobody’s name written, the human-operated elevator with (I’m pretty sure) the same man taking us to our desired floors. The only difference: “fifth floor, please,” instead of third.

I found the studio, paid for my class and went in. I took off my fleece pants revealing my leggings. I took off my sweater. I carefully took off my boot, trying not to have the sound of the velcro reverberate on the studio walls. Curiously, to my relief, nobody gave my giant boot a second glance. I circled my right ankle a few times. It felt good. I could almost point my toe. I put on my brace, inserted my arch support into the slipper, put on my shoes, grabbed my water, and stepped onto the studio floor.

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I was about twenty minutes early. The pianist was warming up. Students were showing up and carrying barres into the center of the room. I looked around and took a moment to think about how I was feeling. Normally, before class, especially a class I’d never been to in a studio I’d never been to, I would have felt anxious. I would have nervously pretended to warm up while I scouted the room for someone I might know, before claiming “my spot” at the barre. But, I wasn’t nervous at all. I stayed where I was, ironically front and center-ish. I knew which muscles needed extra attention before class. I was gentle with my right leg and foot. And when I thought about the feelings, three came to me: calm, peaceful, happy.

All those times I wished to go home, this was the feeling I longed for.

And then Kat came into the studio. It was as if no time had passed, yet it seemed like forever since I’d seen her. She sat on the floor next to two girls who were next to me. I didn’t say anything because I didn’t have words. She smiled at me and then I said this was my first class since my accident. She touched my left leg and smiled some more and asked how I was doing and said she was so happy to see my face and she hugged me and reminded me that I have to work within my new body and then we started class.

The entire barre was done facing the barre, with two hands on the barre. The warm up was perfect: slow enough, gentle enough, and thorough. I was surprised at some of the things my leg could do. I was surprised at some of the things my leg couldn’t do. I didn’t become frustrated, or sad, or angry. I remained happy, calm, peaceful, feeling at home.

Centre was a challenge, I’m not going to lie. I did what I could and giggled nervously when I wobbled. Surprisingly, I found a harmony between my left and right legs. My left leg could relevé and jump. My right had decent extensions, never minding the crooked, half-pointed foot. My upper body knew what to do and the everything felt strangely cohesive.

Here comes the dancing part. There was a pique arabesque balance within the waltz combination. For the record, waltzes are always among my favorite combinations. The right side wasn’t going to happen so I stepped on a flat foot and “practiced” my arabesque line with my left leg in a tendu on the floor for stability.

The left side surprised me. I had a good practice on the right side, I loved being in class, my heart felt so light, and the 3/4 time signature brought me such joy. I was smiling like an idiot, and was not holding back my upper body. I was waltzing like I meant it. And then came the balance.

We all know by now that my balance on my left leg is aces. I piqued into relevé on my very stable left leg. I engaged my thoracic spine, closed my ribs, engaged my lats, lifted my lower abs to support my low back, presented my arms, face, and chest to the very expensive box seats in my make believe theatre, my right leg floated up, directly behind me, and kept rising while I was perched in my balance until the very last moment of the very last note before the next step which wasn’t late, but perfectly timed; and in that moment, my heart danced.

The next two combinations were jumps. I fluttered around in the back of the class, adapting, marking the right leg, enjoying moving my upper body.

Then, the reverence. Class was ending. In my life, I have never been so truly grateful for a pianist, a teacher, lovely and kind classmates, and especially the feeling of dancing. I have never had a reverence mean so much to me (probably because I never had a ballet class mean so much to me).

After class, Kat, a few students, and I walked out of the studio together. Kat was on her way to Peridance to rehearse a piece for their showcase. She walked with me talking to me, interested, concerned about everything I’m going through. We talked about Florida. She told me I can always come to any of her classes, even if I am not able to fully “do” the steps; it is good for me to be there. She was right. She hugged me again before I went down to the subway.

Even as I was saying goodbye to my beloved teacher, not knowing when I’d be able to dance again, I only felt joy and at peace within the moment. For, I have now known true sadness, real loss, and that short amount of time was a gain beyond measure. It is one that I will remember and happily hold onto for a very long time. For an hour and a half, I remembered who I was, I knew who I am. I didn’t feel confused, aimless, overwhelmed, or lost. Although still in pain and only mildly capable, I was safe, happy and at home.

And that, my friends, is my 2100 word essay (with photos) about the first time I danced (sort of) in almost three years.