Lay-Down Comedy

I was talking to a friend on the phone the other night, describing some CRPS nonsense or another, and I said, “I don’t have a leg to stand on.”

He paused, gurgled back a chuckle because whatever I was talking about was, in fact, not anything to laugh at, he paused again, and asked, “uhm, did you just intensionally make a leg pun?”

Of course I did. I do it all the time. Leg and nerve puns are great. “Shake a leg,” “I’m on my last leg,” “this is fraying my nerves.” I could go on. But I won’t.

Puns, along with dry (arid, extra-dry) sarcasm, help me tolerate it all. I guess you could say that I have a penchant for finding humor in situations that are exceptionally not at all funny.

My friend commended my ability to make light of my overwhelming circumstances. Pretty soon, we were both laughing a little too hard about CRPS and the ridiculous overarching shitstorm that I call my life. He told me that I could (should, really) make up a stand-up comedy routine.

“Yeah, except for one small detail: I can’t actually stand up.”

Right. Of course. So I’d have to find a way to deliver the routine from my bed.

So I gave it a little (very little) thought: my lay-down comedy routine would probably be some bizarre hybrid between Disney’s Bedknobs and Broomsticks

and a much less thrashy, much less maturbatory rendition of Madonna’s Like a Virgin performance from her Blond Ambition tour.

Think about it. It’d be great.

Misery Motivates Me

I said it before. And I said it again. And now, I will say it once again: misery is my main motivation.

And it really doesn’t get much more miserable than yesterday morning.

It was supposed to rain about twelve-thirty. My leg told me it could be sooner. I went to the pool at nine-thirty anyway because swimming is now part of my religion. (Sit tight, there will be more on religion later…)

I got in. The pool was cold. My leg hurt. I started swimming. Moving right along.

About fifteen minutes into my swim, I felt the rush of water that comes from an enthusiastic flip turner in an adjacent lane. I looked over and saw the familiar tattoos of a dude who was once my friend, tried to take me out on a date (many, many, many, many months ago now), but he realized I wasn’t kidding about being crippled, and tried to be my friend again before abandoning the effort to move on to another girl who, quite coincidentally, lives four blocks from my old apartment in The City and, compounding the irony, she just so happens to belong to my former luxury gym with a beautiful indoor evenly-heated pool. Whatever. The dude. We are both athletes (one more legitimate than the other), go to the same YMCA, and sometimes see each other at the pool. It’s cool. No hard feelings.

Except: I knew that there were two other empty lanes on the other side of the other lane beside me. The lane he chose was next to the water aerobics class. Nobody ever chooses to be in the lane next to the water aerobics class. I won’t explain the reasons why, but you can imagine… So what the fuck? Whatever. I kept swimming.

Except: he, for some unexplained reason, deliberately swam directly beside me, keeping pace with me (note: he is a much faster swimmer than I am). And what you have to understand is that this guy is not just a triathlete, but an ironman. He moves a lot of water when he swims.

There were a couple of laps when I almost felt like a dolphin playing in an ocean liner’s wake,

but, for the most part, I was more like a dinghy in a hurricane, especially if I didn’t perfectly time my duck dive under the flip turn wave.

My leg was hurting, I had swam for about forty minutes, I knew the rain was coming. I told myself just a few more laps. I felt water on my arms and head as I swam. Is this guy really splashing that much??? No. It was raining. I was done.

I got to the shallow end of the lane just as the deluge began. I pulled myself out of the pool, as the lifeguard was putting my belongings under an umbrella he had set up on one of the tables (note: the lifeguard is, as he should be, the hero of this story).

Rain was pouring, my leg was shaking violently. I huddled under the umbrella, wrapped in a towel, standing with my spasming right leg propped on a chair. The rain dripped off of the umbrella and onto my leg which was partially covered by my towel. The result: my towel got more soaked with every second I stood there trying to stay dry/warm and stop shaking.

As I was adjusting my towel in a fashion to reduce sopping up rain water, it happened. Lightning. Everyone, including the dude, had to get out of the water. He came over to the table to assess the situation, and check his phone. We had a brief, disjoined pseudo-conversation. “This misery motivates me,” I said.

He said something like, “There’s someplace you’d rather be?”

I said something like, “Yeah, not crippled and in my old apartment, working.”

The lifeguard came over and told us that he needed to clear the pool deck for 30 minutes. I, humiliated and shaking pathetically, whispered, “I can’t walk.”

“I will help you,” the lifeguard said. He took my backpack, shoes, and offered me his arm, which I did not take. I have to have some amount of dignity, after all. And then, my swimming buddy buzzed past me and said, “Well, I’m off to greener pastures.”

Awesome. Very helpful comment. Thanks for that.

The lifeguard set up two chairs for me in the holding area where I was to wait out the storm. I sat, facing the pool through a locked gate, my right leg extended in front of me shaking on the second chair.

Two other women waited with me because they wanted to continue their swim after the storm. Both women are regulars like me. One sat next to me and started a conversation. “How old are you?” she asked me. I told her. Her eyes bugged. She said, “I thought you were 24, maybe 26, 30 tops.” I had no response so I blinked at her instead. She continued, “you have no body fat. Your stomach is completely flat…”

At that point, I tuned her out because I wanted my leg to stop shaking and stop hurting. I wasn’t interested in entertaining her accolades about how young and fit I look. She is a very sweet, well-intentioned lady. She finally mentioned that her two children were born the year before and the year after me. I changed the topic conversation to be about her children.

Fifteen minutes into the thirty minute wait since the lightning strike, the second woman decided to approach me with her hands raised. “You look like you are really suffering. Do you mind if I pray for you?”

Oh for fuck’s sake…

You see, around here, people have some bizarre notion that if they “lay hands” and speak in tongues and say things like “Jesus, strike the devil from her leg…” then I will magically, miraculously be “cured” by Jesus’s Almighty Grace. Or something.

People have “laid hands” on me several times in the past three years. That’s not the way CRPS works. Apparently it isn’t the way Jesus works either because I should have been “cured” many times by now. But, guess what? My leg still shakes. I still have CRPS.

I wasn’t in the mood. I told her that she may not touch me. She put her hands down. I said that if she wanted to pray silently, I would appreciate it. I followed up with an informative “but…” letting her know that Jesus most definitely already knows about my leg.

The three of us then sat in awkward silence, avoiding eye contact, until the lifeguard came out of his office, gave the all clear, and re-opened the gate.

The sun was shining again. The lifeguard carried my backpack and shoes back out to the deck and set me up on one of the deck chairs.

The spasms continued for an additional 45 minutes. The pain had made me dizzy and nauseous. I took slow controlled breaths and sipped water for 30 minutes after the spasms stopped.

What’s so motivating about this craptastic tapestry of annoyance, humiliation, and frustration? You see, I can’t stand that this is my life. I still can’t believe that this is my life. This cannot be my life. It has to change. Things have to improve. I must work to change it. I must keep fighting.

Peaks and Valleys

I spent the weekend binge watching Australia’s version of The Biggest Loser (tangentially, Australia has a number of reality shows that are just as good as, if not better than, their American counterparts. My Australian favorites are: The Biggest Loser, Australia’s Next Top Model, MasterChef… Anyway…).

For years, The Biggest Loser has been one of my guilty pleasures. But more than a guilty pleasure, the show is very inspirational for me. It used to help reinforce the mindset to keep pushing harder, keep working through the pain, keep going until the point of ultimate physical exhaustion. I spent decades pushing harder, working through pain, and going until the point of ultimate physical exhaustion. The reward was always worth the extra effort. I always became stronger and more focused.

My binge-watching weekend made me think: everything in my life must now be put into context of CRPS, even my beloved Biggest Losers.

Now that I have CRPS, there is no such thing as pushing past the pain. As the pain becomes exponentially worse, my leg fails and does not respond. Pushing harder becomes an impossibility, and ultimate physical exhaustion never comes. Very carefully, I must monitor and cater to every sensation in my dumb CRPS leg. Otherwise, I will be in bed for a week or two, fighting a flare.

Moreover, it has taken me almost three years to realize: the good days are tricks. Good days do not mean that I am more physically capable. A good day is not a CRPS-free day. On a good day, the nostrils and eyes of the alligator are peaking just above the water. The alligator is still there, lurking, and if provoked, it will attack.

Of course, this is a lesson I’ve been learning the hard way.

I had a good day two weeks ago. I woke up and my foot moved with more ease, the constant buzzing was quieter, my leg wasn’t as cold, the skin fire was smoldering, the gunshot wound felt like it was healing. I walked a little less like Charlie Chaplin. It was wonderful. I swam longer than usual. I did my full set of PT exercises. I tried some basic ballet barre exercises with my right foot. It was glorious. I wanted to push harder, but the pain and all of the accompanying CRPS symptoms crept back. Before the end of the day, I could feel the flare coming.

I am still not back to where I was the day before my good day. A good day is a mind fuck; in some way, good days are the worst part of having CRPS. There is no logical explanation for the extent of this recent flare. I didn’t put forth any kind of effort that should have pushed my leg into this level of rebellion. I didn’t run a marathon, I didn’t ride 100 miles on my bike, I didn’t perform (or rehearse) swan lake, I didn’t do 32 fouettes en pointe.

For half of a day, I lost my troll-like gait, I swam 15 minutes longer, I did 20 reps of 5 exercises with a red theraband, and I did about 16 tendus with my right leg. There was no reward for my (minimal) extra effort. I am weaker and more aimless.

I guess I’m starting to get it. I need to actively seek some kind of CRPS homeostasis, where I don’t try to push myself to achieve any kind of tangible physical milestone.

My perception of success must shift.

Maybe success is to be measured in flare-free days instead of HIIT workouts, muscle density, or hours spent on the bike or in the pool. I must give up the exquisite endorphin rush that follows a near-vomit workout. I must not try to take advantage of a good day to try to be more productive. I just need to keep to my routine and enjoy the diminished symptoms for a day.

Ugh.

This mentality is boring. Very boring. Borderline lazy. It is counter to every ounce of an indefatigable work ethic that has been a fundamental part of my psyche since I was four years old. But these flares are all consuming and they are stronger than my self-judgment.

So now, I must chop off all of the peaks in order to fill in the valleys.

On Motivation

People complain to me that they lack motivation and sometimes ask me for advice on staying motivated.

It’s very simple: just remember what you want, why you want it, have hope for the future, and have enough and faith in yourself to patiently take one day at a time.

That sounds great, but let’s put it in the context of my reality. I hate every aspect of my life; this hatred is strong enough to drive me to keep trying to change. Day after cruel day. Unrelenting physical pain is at war with emotional pain. Lopsided physical strength teams up with dwindling emotional strength in a desperate attempt to instigate change.

Here, in no particular order, are some of the things that continually motivate me to fight to improve my life.

  • I don’t want to get out of bed in the morning. I’m groggy. I hurt. I can’t move. I long for the times when sleep was simply a physical necessity, the times when I couldn’t wait to start my day and leave the house because I had things to do.
  • Florida. Central Florida. With its giant bugs, giant frogs, and giant birds. Year-round allergies. Unrelenting humidity. Every benadryl, every very bad hair day with nowhere to go, every cuban tree frog that jumps out of the ether, every sandhill crane that stands in the road in a showdown with cars traveling 50 mph, every enormous hairy poisonous caterpillar. They all remind me how badly I want to leave this God-forsaken wasteland.
  • Roller coasters. I love roller coasters. A friend of mine casually told me about taking his family to Universal. It sounded fun. I imagined going there. My heart sank as I realized I might possibly never go to an amusement park again.  Let’s pretend for a second that I could walk around and stand in lines all day. The rides themselves would cause my leg to flare. The vibrations, having my leg bent at the knee, being jostled around… It’s just not possible. For now…
  • The misery of finishing an hour long “winter” swim, crawling out of the pool, and having to sit in 55 degree, raining weather, waiting for my leg to stop shaking so that I can walk and leave the facility.
  • Living with my parents while they demo and reno their master bathroom. I’m not going to expand on this one. You can use your imagination. I love my parents very much and there are no words to appropriately express my gratitude for all they’ve done and continue to do for me. However, prior to this nightmare, I lived alone for many, many years, and over two decades away from my parents’ home. It would be nice to visit them again, even if it was very often from a different house in the same neighborhood.
  • The humiliation of people’s sympathy. I’m tired of being that tragic girl with the sad story. I’m tired of people telling me in unassured or saccharine tones how strong I am and how things will get better. I’m tired of the furrowed brows when people ask how I am. I’m tired of people knowing how I am before they ask. I have CRPS… I want to have a happy, secure, normalish, non-sympathy evoking life despite CRPS.
  • Dancing. Of course, dancing. I hate that I can’t dance six days a week anymore. I have fought my body for almost three years and I took one class. It took a week to recover, and it was the most basic level, but I did it. Sort of. I want more. I want to improve. I want my leg to work properly so that I can dance regularly again.
  • Work. I miss being self-sufficient. I miss having the sense of self worth that comes with being able to answer the question “what do you *do*?” because that question really means “who are you?” I want to be more than CRPS, I want to do more than treat and try to overcome it, even though it has completely consumed my life.
  • Loneliness. I have friends, and I am slowly making new friends through swimming at the YMCA. But, my face-to-face interactions are short and most of my time is spent at home, alone. I text or email my far away friends, and speak to a small number on the phone. This is a reminder of how distant my old life is. I would love to meet up for cocktails or coffee, go to a movie, wander around town laughing, losing track of time with a close friend.

I kind of feel like I should have a more upbeat, positive message for motivation, but this is the truth. My life as it is now is wholly unacceptable, and that is what motivates me at 7:35 every morning when my alarm goes off after another night of sleeping poorly. It is what motivates me to get out of bed, and face another lonely day of therapy for my leg. It is what motivates me to swim six days a week. I remember that the pool at the Columbus Circle Equinox never had frogs. I remember screaming with joy on roller coasters. I remember the happy exhaustion after dancing ballet for four and a half hours. I remember never having to question whether my leg was going to hold me up. I remember never saying “I can’t.” I remember these things and I want them again and I will do everything in my power to try to regain them. So, as much as I don’t want to get up and try again another day, I want to have my life back infinitely more.

So there you have it. Motivation.

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.”

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.

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.