Vignettes: Seventh Sympathetic Nerve Block and a Neurologist Check up

By this point, you know the drill as well as I do.

I went straight to the neurologist from the airport. The check-up went very well. He measured my calves, still noticing the significant atrophy of the right leg. This time, I looked. The right is 1.75 inches smaller than the left. I was shocked because I thought since I had been riding my bike so much, I would have rebuilt some amount of muscle. Apparently, if the muscle doesn’t fire properly (beyond crazy spasms), then the muscle can’t build mass. Go figure.

But that was where the not so good news ended. My doctor noticed that the temperature difference between my two legs was not as severe, nor was the color difference. The swelling was almost completely diminished. My right toenails still don’t grow at the same rate as my healthy left toenails, but they have started to grow again. These are all very promising signs.

The pain is still excruciating, and my leg still goes into spasms, but my neurologist looked me square in the eyes and said, “you might be one of the very few people who overcome CRPS.” He paused for a minute to let that news sink in. Then he added, “but you have to be patient. It is going to take years, so you have to keep doing what you are doing. I want to see you again in February.”

If would have skipped out of the office, were I able to skip…

The nerve block went without complication, I suppose. Needle through the spine, injection that feels like an alligator is chomping my leg and abdomen, recovery. I’m an old pro at this by now.

However, my pain doctor is not satisfied with the level of pain I continue to to experience on a daily basis. She wants me to have a lidocaine infusion a few days prior to my next nerve block, hoping that it’ll provide a one-two punch to the pain. Who knows. I’ll try almost anything she recommends at this point, if it means I might return to a normal life.

After leaving  my appointment, I stumbled upon a Downton Abbey exhibit. It appeared to be full of the costumes and furniture and history and all sorts of other secrets that only a reservation and $35 would reveal. I loitered looking in the windows for a few minutes and then moved along.

I also took a ballet class at Ballet Arts, from my favorite teacher, Kat Wildish. She was, as she always is, warm and welcoming and kept a close eye on me.

And I guess that was it…

Sort of…

This entire trip was tainted by the stench of a CRPS hijacked life. You see, the day before I left for New York, my dad went in for his regular health check up and ended up being immediately admitted to the hospital.

Despite his blood work and lab work showing stellar numbers, something was very wrong. He was admitted to the oncology unit. Something about the liver, possibly the bile duct. His abdomen was filling with fluid.

He needed tests and scans and tubes. He needed his family there to support him. And yet, I had to go to New York for my CRPfuckingS bullshit. I needed to get the treatment. I didn’t have the choice to stay and help comfort and take care of the person who has helped and comforted me the most in these past few years.

Leaving him in the hospital the night before I left broke my heart. When I came home, we still didn’t have any definitive answers, but he had been released from the hospital with the news that there would be no good news.

Meanwhile, my next appointments are scheduled for the first week in February. The lidocaine infusion, a check up with my neurologist, and another sympathetic block. Something has to change. Something has to work. I can’t keep living my life in the claustrophobic confines dictated by CRPS. I need to be able to be available to help my family. I am very scared about what the future has in store, and I know the difficulty will only be compounded by CRPS.


Vignettes: Neurologist Check up and Sixth Sympathetic Nerve Block and Ballet

It’s funny (not really), how all of this has become normal for me. Traveling a thousand miles to see my doctors. Having a large needle threaded through my spine.  No big deal… Except, it is a big deal. Except, I can’t complain because it is what I have to keep doing at this time.

My neurologist check up went… well… like they usually do… I was in extreme pain from my trip. My leg was having a full-blown dystonic meltdown like a tired, hungry, spoiled, obstinate 3 year-old child amid temper tantrum hysteria. The neurologist didn’t like that very much.

He wrote a new prescription, increasing my dosage of Lyrica. He noticed significant visible atrophy in my right lower leg. He measured around both of my calves. My left was just over 13″. I couldn’t bear to look at the measurement of the right. He told me to keep swimming. He said wanted to see me again in another three months. Awesome.

And the nerve block. All of my favorite and familiar fellows from Columbia’s Pain Medicine program moved on over the summer. I was at the mercy of a new crop of fellows. The sympathetic block procedure went very well. Under the tutelage of my beloved doctor, the unfamiliar new guy performed beautifully. Another one for the hall of fame.

But getting to this point was a bit of a struggle. The appointments happen in three phases. The third is the procedure itself. The first: Check-In and vitals taking. Everything normal. Fine. The second: IV connected to a bag of saline solution (you know, just in case…). This is where there was a bit of… uh… a hiccup. A big bloody hiccup.

By this point, I have zero fear of needles. I don’t really care about seeing my blood. I don’t like it, but I’m not squeamish that way. Or at least I didn’t think I was. I was ready. The new guy asked me to show him my hands so he could see my veins. I raised my eyebrow because, like, the veins in my arms bulge and don’t need close inspection. I told the doctor, (‘he’s new,’ I told myself, ‘I’ll go easy on him’) about my deal with his predecessors about using my elbow vein.

I don’t think he was expecting a special request. I inadvertently threw him off his game.  He struggled getting the bag openedish and left the room with the bag, tubes, and pole. Uhhm? Hello? Goodbye? A couple minutes later, he returned. I saw through his thin veneer of feigned confidence. I sat still, still confident that everything would be fine.

He placed a paper towel underneath my elbow. Whatthefuck? I decided to force my attention away from the obvious intrusive premonition.

‘Whatever,’ I quietly consoled myself, ‘maybe it’s just his thing.’

Nope. Not just his thing. This guy had no clue how to start an IV. The “little pinch” somehow resulted in a massive leak from my vein. The flimsy paper towel was useless. Blood poured out of my elbow. I stayed still and quiet and breathed as calmly as possible. If I freaked out like I wanted to, I knew he’d become even more rattled. He gained control. I felt lightheaded. After he cleaned most of my arm (wiping, wiping, wiping), he couldn’t figure out how to open the IV to allow the saline to enter my bloodstream. Instead, what was left of my blood traveled up the tube.

An angel, in the form of the technician, entered the room to help me into the procedure room. She looked at my curiously bloody elbow. She called my doctor over. “There seems to be a lot of blood backing up in the tube.”

I couldn’t hold myself back any longer. “I think that if someone would just open the IV, the flow of the saline would push the blood back into my body.”

“The IV isn’t opened?! Oh! Of course. There. Is that better? That’s better.”

I prayed to baby Jesus, Buddha, and Benny Goodman, “Please, please, God, don’t let that guy be the guy threading a needle through my spine. Pretty please?”

He wasn’t. He left the room. Halle-fucking-lujah.

The doctor who performed the procedure was incredible. And that is really all that matters. It’s funny (not really) how I don’t care if I almost bled to death, so long as my leg is warm, stops hurting, and shaking for a few days.

The bright spot in my trip was, of course, a ballet class. The teacher I’ve been taking from, Kat, was out of town. I looked at the various schedules of the various studios. Another one of my favorite teachers, and friend, Jamie Salmon, was teaching a beginning ballet class at Broadway Dance Center. (Her class was the last class I had taken before my accident. Peridance. June 13, 2014. It was a Friday.)

I went to the barre. I stretched. Into the room slumped my all-time favorite accompanist. Vladimir. He has been playing for classes, around The City, as long as I can remember taking classes in The City. At least 20 years. I smiled and cried a little bit. I get so nostalgic.

The class was crowded. Jamie didn’t see me. Halfway through barre she approached me. “Pull up even more with your standing side,” she rubbed the back of her fingers along my oblique abs. I was standing on my left foot. I was able to make the correction. “Good girl.” She smiled and moved on.

But centre was, as it is now, a struggle for me. I am getting better at merging what I can do with what I can’t. But everyone was messing up the timing of one combination. I wasn’t the only one struggling. She stopped the class and said, “It’s not that it was not musical… but it certainly wasn’t what I’d call musical.” Most of the class snickered quietly. I guffawed.

In a half-whisper half-exclamation, if that’s possible, “Jenn!” She was beaming. “I’m sorry, I just can’t wait until the end of class to hug you.” She came to me and embraced me with the warmest, most loving hug I’ve received since Kat. Then class continued with my usual flubbery.

After class, in the hallway, Jamie and I talked, catching up, for about a half hour. She bragged about me to other bystanders. “Jenn, religiously came to my 9 am pointe classes. She helped me get it up and running. Not many people thought a 9 am hour and a half pointe class was possible.” She laughed. It was, hands down, the best pointe class in the city. I held back a tear knowing that I will probably never dance on pointe again.

The next class had begun. I looked in. Holy shit. Sascha Radetsky was teaching. At Broadway Dance Center. We made eye contact through the window. He cocked his head and smirked at me with the curiosity of a vague memory of someone from many many years ago. He kept demonstrating without missing a beat.

As you can probably imagine, going the class added much needed grounding comfort to another exasperating trip. I spent a total of just over two hours in the building, yet that precious time is the reason why I keep trying to fight this CRPS battle. Dancers are my people. Ballet is my home.

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.

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…”

What Is Pain Management Anyway?

Unless you are, or someone you know well is, burdened with the misfortune of needing a pain management doctor, you probably don’t know what this kind of doctor does. It’s OK. I didn’t know either.

At first, I resisted the idea of pain management because, like, it just means a prescription for opioids, right? Wrong.

First of all, we should differentiate between the pain clinics one hears about in the news and the true profession of pain management. I don’t know anything about the clinics, referred to as “pill mills,” beyond the fact they exist and have given the real field of pain medicine a very bad name.

Pain management is a specialty within anesthesiology. That’s right: anesthesiology. So, pain management doctors are MDs, they completed residency, they specialized in anesthesiology, and then they further specialized in pain medicine. They are highly trained in various intricate and delicate procedures, and concurrently have the best bedside manner of any doctor, nurse, or physician’s assistant that I have ever encountered. It’s a lot of work and effort, and not a profession that one chooses if he or she simply wants to make money writing prescriptions for hard core drugs.

My pain doctor always wants to take the least invasive measures to achieve marked improvements. In addition to the needles through my spine, she makes me work on the psychological aspects of CRPS. She makes me touch my leg with different objects to try to convince my brain that it doesn’t feel like I’m getting a tattoo on top of a road burn on top of a blistering sunburn. I am supposed to play soothing music and turn on an aromatherapy mist while I rub things like a scarf, rubber ball, and a metal ruler on my ankle (I haven’t been able to tolerate the ruler yet). It’s woo-woo; it’s pretty fluffy; it makes me feel like all of this is in my imagination. But it’s not. This fluff stuff is supposed to work in conjunction with the giant needles and the medication. I do the fluff so that one day, I can hopefully wear pants, and so that I won’t collapse in pain if my cat rubs against my right foot/leg.

And then there are the procedures. I only know what has been recommended specifically for me for my condition.  I don’t know if I have told you this already or not, but my all of doctors are the best. My pain management doctor is Dr. Leena Mathew of Columbia Pain Medicine. Columbia Presbyterian is a teaching hospital, so Dr. Mathew leads a team of doctors who are completing their pain medicine fellowship.

An IV was started for each procedure I’ve had done. A doctor starts the IV, and every time it has been fast, flawless, and painless.

They instinctively like to go for that one vein in my hand. It’s so tempting. It stands up at attention without a tourniquet. It’s a lovely and welcoming shade of blue. It is even shaped like a little smile, coyly beckoning the needle. However, having the IV in my hand really hurts. I have to hold my hand in a certain way so that it doesn’t poke up and put pressure on the side of the vein, and that causes it to rub against the tendons and bones in my hand. It’s tricky to concentrate on finagling a less painful position of an IV in your hand while an 8 inch needle is being meticulously threaded through your spine. If you haven’t experienced it, you can just take my word for it. So, the last two times, I’ve asked to have it put into my elbow vein. This vein is much more unassuming and takes it like a champ, never rolling or collapsing. The only caveat is that I can’t bend my elbow because that would put a kink in the IV line. The doctor who inserted the line said to me, “we will put the IV wherever you are most comfortable. We are pain doctors. The last thing we want to do is cause you any additional pain.”

Before my last procedure, I commented to the doctor how easily he started the IV. He smiled, and chuckled a nervous little giggle, and shyly said something like, “yeah, anesthesiologists tend to be pretty good at starting IV’s.” Oh yeah, duh. Good point.

Once my IV is dripping smoothly, two doctors usually walk me into the procedure room and patiently help me maneuver onto the table. It’s a complicated set up. The procedure is done under a live x-ray. The machine is C shaped and can move around my body to take images from different angles. It’s pretty incredible, but tricky to get in there with my boot and IV. Once on my belly with my IV bag out of the way, I am then further encumbered by a blood pressure cuff and a pulse oximeter. It sounds pretty horrible, as I’m sitting here typing it out. The experience is definitely not a party, but my doctors are so kind and attentive and really try to make me feel as comfortable as possible.

And then the needles. I get several shots of lidocaine, increasing in depth, attempting to numb the general area that will accept the big needle. The first time I had it done, they opted for some kind of regular old standard big needle. I felt like an alligator was chewing me in half. The second time, they used a much thinner needle. The thinner needle was easier for me to tolerate, but apparently it is a little more wily than the standard. The doctor had to go more slowly and delicately back it out slightly a couple of times before inserting into the ganglion. The third time, the thin needle was used again, but the doctor remembered exactly how to insert it into my body. The fourth time, most recently, while setting up the x-ray, the doctor placed markers on my back and, off the top of his head, remembered the angle he used for the previous injection. During the procedure, I thought I was still getting lidocaine injections, but the doctor was already in the ganglion. I felt the pressure on my thigh and my leg felt warm and I knew the medicine was going in. I mentioned how quickly they inserted the needle, and Dr. Mathew said that they now know my anatomy and they know how my body reacts and they have tailored the procedure accordingly.

My pain management doctors have learned about me. They know more about me than just my CRPS. They are interested in me as a person, not just a patient. They know how severely this ordeal has affected my “quality of life.” They are all rooting for me and want me to live an active life again. And throughout these nerve block procedures, Dr. Mathew speaks calmly and gently to me. She rubs my non-CRPS leg kindly while asking how I am doing. In the same soft tone, she coaches the doctor who does the injections and explains the procedure to the other doctors in the room. I’ve had the same doctor perform the past three of four nerve blocks. Before and after the injection, we have normal every day conversations: jobs, weather, places we’ve traveled. It’s a tactic to make me feel comfortable and relaxed. It’s nice. I wish every doctor could learn from pain doctors.

The only medication prescribed to me (so far) by my pain management doctor is baclofen to better control the spasms in my leg. (My neurologist prescribes the medications to try to control my misfiring nerves as well as some of the physical symptoms of CRPS.) Opioids have not yet been part of any conversation. My next steps probably include radiofrequency ablasion, with a possibility of a spinal cord stimulator. Everyone (my pain doctor, my neurologist, me) wants me to get out of this without the stimulator. The opioids would come only after all other options (including a remote controlled electric shock machine inserted into my spine) have been tried and after they have not provided long term relief.

I’m in this for the long haul, and my treatment probably won’t stop with the nerve block injections. Remission is the ultimate goal, but in the meantime, I feel confident in my doctors’ dedicated efforts to manage my pain.

Vignettes: Fourth Sympathetic Block, Adjournment, Ballet, and a Blizzard

To an outsider, these trips to New York City may seem light-hearted, “glamorous,” maybe even fun, especially when sped up, when people walk backward, along when there is a catchy song playing in the background.

However, the truth is that I dread every trip. They are horribly painful, stressful, and expensive. I try to distract myself. I find happy little moments and share them with you.

This trip was possibly the most stressful yet. I am involved in several legal “situations” and I am not supposed to reveal any specifics. But, the purpose of this trip was the possibility of a deposition. Yes, I said “the possibility.” The way it works is that I am given a letter many months in advance of a date and a time, stating if there is a proceeding it would happen at then. But no one really knows if it will be adjourned until just prior. Location: somewhere (anywhere) in New York County.


So that I didn’t buy a plane ticket, plan accommodations, etc., for some nebulous thing that may or may not happen, I gave the trip a dual purpose and also scheduled my next nerve block.

The block, because I have the best group of doctors possible, went off without a hitch. It still hurt and was definitely unpleasant. But they have adjusted the placement of my IV line, “learned [my] anatomy,” and use the smallest possible big needle. Including recovery time, from IV in to IV out, the whole thing lasted just under an hour and a half.

I called my lawyer daily leading up to the impending date. As my luck would have it, a blizzard was going to hit on the same date as the deposition. Lovely. I was picturing humping with my cane and boot through the blizzard to some undisclosed location in New York County.

The deposition was scheduled for 10 am on Tuesday. At noon on Monday, my lawyer and I received word that it had been adjourned. For non-blizzard related reasons. Wonderful.

I had a full melt down, on the street, on the phone with my lawyer. This is too much. It is all far too stressful for me to handle. Just when I think I’m on the verge of getting a grip on my life, a blizzard (shit storm) comes my way. I tried not to think about the money wasted staying in the city for an additional 3 days, waiting for something that wasn’t going to happen. But, Jesus. So much money. Money that I don’t have. Money borrowed from my parents.

I called a friend and cried as I talked to her, walking (clopping) through Central Park. I slowly calmed down. Several little moments over the past few days dropped all of the clues I needed to realize it was time for me to find my way to a ballet class. It was a very basic class. Like both hands on the barre basic. In centre, “dancing” mostly consisted of  standing and wobbling while moving my arms and head. But, it happened. And, that ballet class diffused all of the day’s stress and sorrow.

Oh, yeah, that’s right. I’m a dancer, dancing is my outlet, my focus, my love. My determination to drive my CRPS into remission is even stronger now.

I woke up Tuesday morning, and wouldn’t you know it? Yup, there’s the blizzard. Super.

My original flight had been canceled, but the airline rebooked me onto a flight leaving Tuesday night. It was still scheduled and “on time” as of Tuesday morning.

I packed up, got myself ready, and I stepped out into the wind, sleet, and snow, bound for the airport. The E train was a block and a half from where I stayed. Let me tell you, that was the longest, most treacherous block and a half of my life.  My cane saved me a couple of times.

The airport was packed, but all of the people were camping out (literally, laying down, sleeping) by the kiosks. I assume they were waiting for available flights. I’ve never seen anything like it. I, however, being a ticketed passenger on an “on time” flight, hobbled past the campers and through the security checkpoint. I was almost 8 hours early for my flight, and I was the only traveler on the terminal side of security.

The food court was surprisingly open. I bought lunch and some snacks. I made my way to the gate area. Most of the shops were closed and gated, but some of the kiosks were open. There were plenty of airport and airline workers. I felt sorry for them.

Let me stop here for a second to tell you about the JetBlue pods. A very long time ago, I heard about sleeping pods in the JetBlue terminal at JFK airport. I fly in and out of JFK because the AirTrain makes my trips very easy. As you may remember, I switched to JetBlue last year after the alligator debacle on American Airlines. I’ve been casually looking for the pods to no avail ever since. I’ve joked about never seeing the elusive pods.

Guess what? The pods were two gates away from where my flight was scheduled to leave! I bought a tea from the girl at the adjacent kiosk. She said she thought my flight would be canceled; I said I had faith. I took my tea to my pod and I settled in.

I was really grateful for the pod because I was able to recline and elevate my foot. My foot would have exploded for sure if I had to sit all of those hours.

About five o’clock, I began to see other travelers. It was a very promising sign. Around seven, I saw planes landing. The airport was up and running. I was going to be able to leave. And then it was time to board. And then it was time to taxi.

And then it was time to sit and wait.

The plane had been left out during the storm. The engines were icy and had to run for a while. Then we had to drive over to be de-iced by people who must have one of the worst jobs in the world. A dude (male, or female) has to sit up in a cherry picker and squirt down the entirety of the plane. It sounds kind of fun, until you watch it being done in cold, windy weather. Our dude had to keep squirting and squirting and squirting because the wind was blowing the de-icing liquid away from the wings. I watched the frustration, knowing that shaky capsule was probably very poorly heated and poorly insulated. I felt very sorry for our de-icing dude.

We were an hour late to depart, but we made it. I arrived home after 2:30 am.

And, now, here’s my little video that accompanies my story. The video is a “better” representation of the truth, but the truth is still the truth.


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.


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.