Better

“You look better.”

People say this to me all the time. I thank them and either respond by saying, “I’m feeling less bad today,” or “looks are deceiving.” If the person knows anything about me or my condition, they sympathize and we move onto other cordialities. If the person doesn’t know anything about me or my condition, they tend to say things like “well, you have to want to get better.”

OOOOOOhhhh so that’s the magic trick? After all these years of doctor visits and  tests and treatments, you mean to tell me that I just have to want?  If I want to get better, I’ll get better? Like, uh, I can just have anything I want? I wanted my dog to live forever. I wanted to be married. I wanted to perform in a Broadway show. I wanted a pet leprechaun when I was a kid. I want to win the lottery. I want to live on my own again. I want to be able to go to a store to buy my own groceries again. I want to be off of all these medications. I want to be able to work a steady job. And you’d better fucking believe, I want my leg to “get better.”

It makes me sound like some kind of jerky pessimist. I’m not. I’m an eternal optimist, despite this colossal shit storm that is my life. The thing is, though, I don’t have the luxury of being a spoiled little brat. Like most regular adult humans, I don’t get to run my life according to what I want or don’t want. I don’t want to get out of bed in the morning. I do it anyway. I don’t want to swim. I do it anyway. I don’t want to do hours of horribly painful inversion exercises hoping my foot will someday align with my leg. I don’t want the attention caused by my boot and my shaking leg. I don’t want forever to be held hostage by my leg. So I keep trying.

I have CRPS. There is no cure. It is a chronic, progressive, degenerative nerve disease. These are facts. I will have CRPS until I die, hopefully at a very, very happy old age.

Generally, people seem to think “better” means “cured” or “healed,” as if it is a punctuation mark, an end point. In this sense of the word, I will never be “better.”

With CRPS I will have good days and bad days. Even if this nebulous concept of remission manifests, I will probably never be completely symptom-free. This is the reality of the situation.

Facing reality doesn’t mean that I’ve given up, that I am lazy, intransigent, or “negative.” It means that I am aware of what I am up against. It means I can manage my expectations in order to set and achieve realistic goals. It means that I can hope to find peace with this new CRPS version of myself. It means that I can redefine myself and figure out who I am now. And, to me, this ongoing process of striving for improvement, and learning to take set-backs in stride, is much better than being “better.”

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.

Awesome.

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.

Enjoy.

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.

My Blog Process: Thank Goodness for Backdating

It all looks pretty coherent, doesn’t it?

Well, there’s a little computer magic behind these blog posts. I never know how I’m going to feel from one moment to the next so it is almost impossible to find a “normal” rhythm to my life.

The one aspect in my life that stays relatively consistent (apart from CRPS, that is… :-/ ) is swimming. I swim at least four days per week, at least 30 minutes per day.

Most of the time in the water is spent zoning out, trying not to wince, looking at the pretty sparkles, listening to my gasp for a breath followed by a long, constant exhale of bubbles followed by another gasp. Sometimes I like to make trumpet noises with my mouth during my exhale. Sometimes the trumpet noises sound like a pterodactyl.

However, sometimes, there are actual thoughts that enter my mind. Sometimes these thoughts demand further thinking instead of allowing themselves to enter my mind and leave again. I suppose a true zen master might let them go, in order to experience the bubbles, sparkles, and pain. But, having the clarity of mind and ability to think is a rare commodity for me now, so I allow myself.

When I get out of the pool, waiting for my leg to stop shaking, I sometimes open the WordPress app on my phone and start a draft for a new blog entry. Those blog entries are never finished when I start them. I store them up and when I have “good days” I finish one or two, backdating to the date of the original thought. I currently have 9 barely begun posts hibernating in my “drafts” folder.

Even this post has marinated for several months. I made my first notes in December; I’m finally finishing it in March.

So, you see, WordPress provides me the luxury of blog time travel. If only real life worked the same way…

Anyway, that’s how it works, and that’s why new posts will sometimes magically appear in the past.

 

Quarter Time Girl

One of my swimming friends is a remarkable woman. She is a former tennis pro. Injuries took her profession many years ago. Like me, she swims as therapy for her chronic injuries. She now relies on one of her other talents for income. She is a pianist and teaches piano to children.

We like to talk about music and how it relates to our lives.

Today, she was asking me about my stroke timing.

I said, “Four kicks per stroke, four strokes per breath, and I am happiest if I can swim a length in 16 strokes. Recently, I’ve been doing 17 strokes. It’s driving me crazy. I like it to be square.”

Then she smiled and said, “I understand. You’re a quarter time girl.”

I told her that I was actually thinking about changing to 18 strokes per length, but then I would have to take a breath every six strokes, and maybe even switch to three kicks per stroke. But all that seems like a lot of change; I don’t really like change.

We made a joke about 6/8 time signatures. Then our little break was over and we both started swimming again.

My Brain on Drugs

Some folks like to joke about the fact that I “get to” take “drugs.”

Let’s be clear: I am forced, against my will, to take medication. I don’t like feeling cloudy. I don’t like the constant confusion. I don’t like not being able to think clearly. I don’t like feeling as if my brain was replaced by straw.

Here is an example.

(Yesterday, told in the present tense.)

I brush my teeth. I shower. I want to put on deodorant. I brush my teeth instead. I leave the bathroom and make it two steps, stop and remember. That’s right: deodorant. I go back into the bathroom and see my toothbrush. I brush my teeth. I leave the bathroom and make it two steps, stop and remember. This time, I’m not going to allow that dang toothbrush to trick me, standing tall on it’s charger, with its pretty green light. I walk back into the bathroom (determined, with as much focus as I can muster), repeating to myself “deodorant. deodorant. deodorant. deodorant…” until my hand has a firm grip on the container.

An hour later, I think to myself, “have I brushed my teeth today?”