I’m fired up
and tired of the way that things have been…
Don’t you tell me what you think I can be
I’m the one at the sail;
I’m the master of my sea…
My luck, my love, my God, it came from
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.
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.”
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.
(Preface: I have a bad attitude about people who force their religious beliefs upon me. I have a bad attitude about their rudeness, righteousness, and arrogance, not their religion. I have my beliefs that are just as firmly rooted and just as true to me as anyone else’s are to them. I take issue with the assumption that they are “right” and whatever I believe is either the same as them or “wrong.” My religion is deeply personal and is probably not the same as yours.)
Basically. Praying. I don’t get it. Hear me out.
If I get what I want, then Jesus, or some derivative of a god-like creature governing the Universe, is good and loves me. If not, it is because the Almighty Masterful Force wants to teach me a lesson.
If the Great Master Of All There Is And Ever Was already knows what is “in my heart,” then doesn’t He already hear my cries, my pleas, my desperation in every time I yelp or cry or say (uncontrollably, aloud), “Jesus Christ, my fucking leg…“? Do I really need a holy hotline?
Oh, right blasphemy. It’s bad. My bad. Sorry.
I admit it. I am very sarcastic about praying. Specifically, I find the notion of praying for something I want ridiculous. It seems all too reminiscent of Christmas, 1983 when I really, really, really wanted Santa Claus to bring me a Cabbage Patch Kid. I wanted her with all of my heart. I felt like I would die if I didn’t have her. And now, is wanting my shaking leg to stop, wanting the pain to stop, wanting to work again, wanting to go out with friends for a beer or coffee or milkshakes, wanting my suffering to end, is any of it any different than that Cabbage Patch Kid? It’s all just stuff that I want, and want with great desperation.
God isn’t Santa Claus.
(Although, I know some people who would argue that the ideas are one and the same. Santa was an invention to reign power over children to force good behavior, and some people theorize that the notion of gods and God reign power over and placate The People to maintain order of the masses. This is a topic for debate on someone else’s blog…)
Anyway. Everyone struggles. Everyone suffers. Welcome to what it’s like to be a human being on the planet Earth. CRPS is the very worst kind of bullshit fuckery, definitely, for sure. But, when I stop to think about it, truly, in the grand scheme of my life, all of these endless days of endless suffering make me so incredibly grateful for all of the very, very good days I’ve had in my life. I would be petulant and childish if I felt anything but gratitude for the opportunities that I’ve had. I won’t cry about the unfairness of my life or question, much less place blame upon, some unprovable being. As bad as this is, it could be worse. I know it could be much, much worse. Beneath my hatred of every second of this, lies gratitude. Sometimes you don’t deserve what you get, other times you get what you don’t deserve (and how cruel to believe in an idea of some puppet master tallying up the score…).
And then there are people like the woman who wanted to “lay hands” on me last Tuesday. She said she has “powerful prayers.” Um, what? So, like Jesus listens to her more than other people? Does Jesus like her better than other people? No. Jesus loves all the little children. I am exceptionally put off by someone who wants to use me to make a big public prayer production. Especially if that someone considers herself to be some kind of super-healing-ultra-Christian. Jesus supposedly spoke out against that kind of behavior, so…
(My attitude isn’t just toward “Christians;” I don’t want you to get the wrong idea. I don’t discriminate. I’ve turned down Reiki “experts” for similar reasons. Pretty much, I don’t want to be physically touched by strangers, I don’t want to call any more attention to myself or to my leg than it already commands, and I will not pander to the whims of someone who, despite knowing nothing of me or my disease, thinks they hold the secret resolution to all of my troubles.)
The truth is that I am in a helpless situation. People feel powerless and perhaps feel like prayer is the only possible thing that they can do to help. I understand. It’s an act of kindness. I appreciate it.
So, if you feel like praying for me will make you feel like you are helping, by all means, do it. You may pray privately and quietly for me to any religious/spiritual force you believe in. And if you happen to pray to a Santa-like god who grants wishes, I will tell you what I want or what think I need in my life (but please don’t ask me to sit on your lap).
I really don’t need any further prayers for my leg.
(Jesus knows about my leg. If he didn’t oversee my accident, and every bit of the subsequent aftermath, he has received emails, direct messages, and prayers from every sect and denomination of Christianity. Allah also knows about my leg– It’s true. I have several Muslim friends, and I befriended a very sweet Egyptian couple on a plane last year– Jews pray for me. I’ve had rocks stacked and crystals rubbed for me. I’ve thought about pure white healing light. Someone even supposedly cleansed my aura. I am now quite confident that every supposed governing energy force in the Universe, every god, and God know about my leg.)
What I need are good, trustworthy people to stay permanently in my life, providing deep emotional support, light-hearted laughter, and an occasional hug. I need resolution with respect to certain legal situations that I’m not currently allowed to talk about, and if those resolutions could be in my favor, that would be very helpful. Those are my two wishes, I’ll donate the third wish to you.
I write this blog for a number of reasons. Primarily, it is my catharsis to release nearly every CRPS-related thing that is happening in my life. It is a record of everything CRPS is teaching me, a record of how CRPS is changing me.
I blog using my “journal” voice, the voice I use in my handwriting, writing that fills little blank books, bound and kept closed tightly with elastic, writing that may never to be seen again. Self-indulgent streams of consciousness that don’t pander to any particular audience (despite the fact that I never want you to forget that I am always talking directly to you). Loosely formulated, brutal honesty complete with unabashed f-bombs and shit droppings. Incomplete sentences, with incorrect punctuation. And, it is barely bearable for me to use the tidy Alegreya Sans typeface to express a voice that I normally see conveyed in sort of legible chicken scratch, peppered with crossings outs, crowded margins, dyslexic inaccuracies, and ink blotches that indicate a blinking cursor in my brain.
So why do I do it? Why type out all of this nonsense, pasting .gifs, .pngs, and .jpgs instead of clippings, receipts, and plane tickets onto the pages? Why not just fill another black, green, or red 3.5″ x 5.5″ moleskine?
Because (pathetically, shamefully) I’m really fucking lonely. CRPS is an island of brutal isolation.
I used to use social media, primarily Facebook, to keep in touch with the outside world. In the past year, as you may have noticed, Facebook has become an acrid cesspool of self-righteous political chest thumping. And the braggarts with their exotic foods and journeys around the world (I used to be one of them, so I make this point out of jealousy and embarrassment. Jealous of trips I am no longer able to take, embarrassed to once have been inconsiderately flamboyant with my social media posts). And then there are those who prefer to use the platform as a weapon to inflict emotional pain. Every day, I felt more angry, jealous, sad, and more disconnected from a world that used to be mine. I realized that I have very little in common anymore with my family and friends. The isolation grew greater through being constantly connected. I don’t need extraneous reasons to feel angry, jealous, sad, and disconnected; CRP(fucking)S is enough. In February, I logged out of Facebook.
And so, this blog has become my message in a bottle. And, wouldn’t you know it? It seems I’m not alone in being alone.
The pool was crowded and I was sharing a lane with a friendly ironman woman who swam perfectly straight lines on her side of the lane.
I was cruising, feeling strong and confident until a gust of wind blew the lane line. It drifted into my line and crashed into my right ankle. Well, it probably didn’t exactly “crash” into my ankle. I wasn’t swimming during a hurricane. Maybe the lane line gently nudged. But it was a direct hit to the anterior talofibular ligament, the ligament that suffered the most severe tear from my accident.
An electric jolt shot up my fibula. The interosseous membrane between my tibia and fibula caught fire. The water against my skin gave the sensation that all my skin had been torn and I was bleeding openly into the water.
My right leg dragged, paralyzed, as my left leg kicked and my arms pulled me to the safety of the shallow end. Unintentionally channeling Tonya Harding with her Olympic broken laces, I hoisted my leg up onto the ledge to inspect the damage to my CRPS ankle.
There was no fire, no blood, not even a mark from the impact. That’s how I know the hit was not really that hard. The lane lines are made of hard plastic. In earlier times, I’ve hit them with direct force when attempting to learn to swim the backstroke. They hurt. They leave marks when you hit the edges.
I stood on my left leg in the shallow end, slowly bicycling my right leg to see if I could get the “shock” to wear off. I tried to swim again. The message from my brain to kick my right leg was somehow muddled. My right leg would only sort of wiggle arrhythmically beneath me. I felt nauseous from the pain.
I swam one more lap and got out of the pool. I sat on a deck chair with my leg elevated, lamenting the unabating CRPSness of my leg, ankle, and foot.
And now, my ankle is swollen, my dumb leg’s skin is glistening, splotchy, and discolored. My foot is cold and tingly. The pain wants me to vomit (I’m holding it back…). The fibula feels broken, a hot knife is through the center of my ankle, a spoon is scraping out the interosseous membrane, and an invisible elf is inside my leg, separating the upper fibula from my tibia.
I’ve been watching a blinking cursor for the past 30 minutes trying to think of a hopeful and upbeatish conclusion to this post. I’m unfocused and drifting because of my medications and for some reason a Pharrell Williams song is overriding every thought I’m trying to have. I guess I’ll just leave you with the song.
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.
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.
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.
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.