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.

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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.

That’s What Friends Are For

I have a very specific memory of Dionne Warwick’s song That’s What Friends Are For. 

I was eleven. As usual, my mom picked me up from dance class and took me to my older brother’s swim practice. I took off my tights, grabbed a kick board and got in the water wearing my leotard. The sky was that lovely color that happens just after twilight, reminiscent of The Pirates of the Caribbean ride at Disney World.

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The air was soft and warm and felt like velvet, the water was soft and cool and felt refreshing on my sore muscles. My mom was nearby reading a book, my brother was practicing his sprints in the next lane with about 100 other kids, and I was cruising with my kick board. Just when I thought the moment couldn’t get any better, the coach played the radio over the loud speakers and That’s What Friends Are For came on.

I have no idea why I remember this. Maybe because the feeling of the song perfectly matched the feeling of that evening. It just seemed like Stevie Wonder needed to be there in that moment with me and his harmonica.

I am surprised at how much I have drawn on this memory throughout my life.

The most recent time was yesterday after my swim. My swimming buddy had a rough swim the other day. I knew she was hurting and probably would not make it back to the pool for a couple days.

After I got out of the water (shaking, but not snapping my fingers), I sat on the deck chair and thought about my upcoming trip to New York (I am dreading it). I thought about my friend and realized that it would be a full week before I saw her again. I felt curiously sad. I realized how much I genuinely like her and will miss her. This will be the longest that we’ve gone without seeing each other since September. She has gone from being “just my swimming buddy” to being a dear friend.

And, in the middle of my lamenting not wanting to go to New York and missing my friend, I heard a yell from behind me. “JENN!!” Scared me to death. I turned around, and on the other side of the chain link fence was my friend.

I couldn’t believe it. I hopped over to her. She said she was on her way to teach. She knew I would still be there and wanted to stop by to wish me luck in New York and apologize for not swimming. Apologize? I thanked her (so much!) for coming to see me. I told her I was just thinking about how much I will miss her and how I plan to swim at the YMCA in The City. We talked for several minutes and she was on her way.

Afterward, tears welled up in my goggle marked eyes behind my sunglasses. I was just so damn touched that she would drive to the YMCA, park, climb up a grassy hill, and yell through a chain link fence. Just to say hi to me.

It is easy to feel alone and overwhelmed and scared and like all of this is just too much to bear. But, that’s what friends are for.

Support System

Everything I needed to know about life, I learned from listening to Paul Simon as a kid. As an adult, I find a certain comfort in describing my life through his song lyrics.

Let’s talk about love for a minute, not necessarily romantic love, but any kind of love we may seek. What we seek from one person may not necessarily be what we find. From Hearts and Bones: 

“…and tell me why; why won’t you love me for who I am where I am?
He said ’cause that’s not the way the world is baby; this is how I love you baby”

It’s true. Sometimes the people who love you don’t always love you the way in which you want or need to be loved. It’s not their fault.

I have CRPS. I am needy. I realize this. “Dealing” with me (and my needs) is a lot. I realize this too.  It is frustrating to need emotional support. More frustrating, though, is needing emotional support, finding the courage to ask for it, and then not having it delivered in the form that I needed. I can be left feeling lonelier and emptier than before I asked.

It’s been over two and a half years…

At some point, it occurred to me that I should take more responsibility for my emotional needs. I, being overly analytical, figured out how to get the precise support I desperately need.

Going back to a world I once knew very well, I took a project managerial approach for resource management. I identified various needs and I identified the members of my support system who could fill the needs.

My support system is a big group, and not necessarily limited to a small inner circle of close friends. Let’s face it, CRPS is a big disease and it’s going to take a lot of people to carry me as I try to crowd surf my way through it.

My group is a fluid system, sometimes new members to the group come and sometimes old members go. Sometimes a person is helpful (dare I say “useful”…?) for a short time, then they decide to move on. The old me would have seen this as a great betrayal, felt hurt, wondered why.

I know why. It isn’t a great betrayal. It still hurts, but not as much as CRPS.

I now need to be mindful about emotional expenditure. I don’t have the luxury of extra time or energy for wallowing. I can’t think about loss; I have lost so much. I must be pragmatic.

While I hate to watch someone I trusted turn their back and walk away, I have to evaluate what that person gave to me, consider whether I still have that need, and if so, who else in my support arsenal can provide me with what I need. It seems shallow, or as if I view people as replaceable. People, individuals, are truly irreplaceable. This one will never take the place of that one, as a person. But, when it comes to a desperate need for a bad knock knock joke (for example), if my goto source is no longer available, I must find another person who can fill that role.

Through deliberate and careful analysis, I know myself as I am now and how I differ from who I was prior to my accident. I know when I need to be treated gently, when I need a kick in the pants, when I need to be distracted, and when I just need a hearty laugh.

More important, I know the way in which each person in my support system loves me. I know who will quietly hold my hand and tell me things will be OK. I know who will drive out of their way to give me a hug in a parking lot. I know who will keep calling to invite me to hang out, even if I have to say “no” 95% of the time. I know who will tell me to keep my “chin up,” that I need to “adapt,” and to “hang tough.” I know to whom I can tell exactly what I need to hear so they can repeat it back to me. I know with whom I can commiserate. I know who will seek my advice about life (because I really don’t enjoy being the focus). I know who will tell me that I’m strong and can handle this. I know who will allow me to be weak when I am about to break from feeling lost, angry, sad, and confused. I know who will make me laugh myself into a stomach cramp and tears.

This is the way the world is, this is how they love me. And I am very lucky. And I am very grateful.