I had just finished my daily hour long swim this morning at the YMCA when a friend messaged me, asking about ballet classes in New York City.

It has recently been taking an additional hour of sitting with my leg elevated for the pain to subside and for it to stop spasming so I can put it back into that God forsaken boot.

This act of trying to quiet my leg requires that I go into some kind of transcendental state. I try to use this time to clear my head and focus on “light” and positive affirmations, etc. But, inevitably, I question where I am, question how I got here, and question who I truly am.

This “injury” has taken away so many of the things that defined who I am, or was. This morning, I was feeling extra nostalgic for the city and ballet.

When my leg was ready to cooperate, I put on my boot and made my way out of the building. A lady held the door for me. But, it was one of those awkward situations where I was just far enough behind her to make it uncomfortable, one of those situations where one feels compelled to do a little jog to the door so the person doesn’t have to wait.

Well, I can’t jog. I can’t even wobble quickly. So I hopped (after two and a half years, I’m aces at hopping).

She smiled at me and asked, “have you been an athlete your entire life?” I said, “Sort of. I’m a dancer.” She said, “You look like a ballerina.”

Sometimes the Universe has a clever way of reminding us who we are when we feel lost.

I’m Here

It’s the middle of the night. I’ve already been asleep. Awake and aware that I need to rest, I scrolled through my Facebook feed to lull me into my next cat nap.

Long ago, I abandoned Facebook friends who engage in political online debates or post to provoke or evoke negative emotions. Most of my “friends” are dancers, actors, singers, and generally people who believe there is more to life than forceful expression of political opinions. My Facebook feed is benign, happy, friendly, and supportive.

Let’s be clear. Today (er, yesterday) was a hard day. Again. I swam for 47 minutes. I lied in a chair by the pool for 1 hour 15 minutes waiting for my leg to stop shaking so I could strap it back into its boot and go home.

What a luxury! To be able to lay myself poolside for over an hour, with no responsibilities…  It doesn’t sound so bad, right?

But, you see, the thing is that the spasms hurt. They are violent. People notice. It is humiliating. I was hungry. I just wanted to go home and make a grilled cheese sandwich.

For me, the luxury would be having the freedom to leave the pool when I was finished swimming. The luxury would be to be able to plan my day and execute that plan.

A handful of people watched me cry. Some came over to talk to me and distract me (they all know me by now, this leg has become my identity). I was thankful, but frustrated. I needed the attention, but I didn’t want it. I don’t enjoy talking about my leg, much less pretending that it (shaking, purple, painful) doesn’t exist.

In addition to the usual pain, tonight, my leg was very sore from the morning’s spasms. I dutifully took my pills, went to sleep, and was jolted awake. Cue Facebook feed.

One of my friends posted a video of Cynthia Erivo’s stage performance of I’m Here from The Color Purple. It hit home. I cried again. This time the tears came with renewed hope. I know I have to get up in the morning and keep trying.

“…I got my house,
It still keeps the cold out
I got my chair
When my body can’t hold out

Got my hands doin’ good like they supposed to
Showing my heart to the folks that I’m close to
I got my eyes though they don’t see as far now
They see more ’bout how things really are now

I’m gonna take a deep breath
I’m gonna hold my head up
I’m gonna put my shoulders back
And look you straight in the eye…

I believe I have inside of me
Everything that I need to live a bountiful life
With all the love alive in me
I’ll stand as tall as the tallest tree

And I’m thankful for every day that I’m given
Both the easy and the hard ones I’m livin’
But most of all
I’m thankful for,
Lovin’ who I really am
I’m beautiful
Yes I’m beautiful
And I’m here”

Where Is My Mind?

The sense of self is a curious thing.

We spend our lives building a model of who we think we are. What happens when this model changes without warning? What happens when the things to which we clung, defining ourselves for decades, disappear?

I don’t recognize my body. It looks different; it moves differently. These changes are drastic and can happen from day to day.

“You still have your mind,” they say.

Really? Do I? Many times, I don’t recognize my thoughts.

Maybe it’s the neuron-halting medication, or maybe it’s some form of subconscious self-preservation.

For example, this morning while getting ready to leave for my morning swim at the YMCA, I thought to myself:

“I need more athletic shorts.”

My Soul Has the Power

It’s been a rough couple of weeks.

Since my Christmas flare up, I have been having new pains: in my knee and in my thigh behind my hamstring. I’m so scared that the CRPS is spreading. I feel helpless until my next neurologist check up and next treatment at the end of the month.

I want my life back, my freedom back, I want my dignity back. I miss seeing people and doing activities. I miss having energy. It brings me down.

I might not be able to control what’s happening in my body, but I can (to some extent… drugz) control my attitude and outlook.

When I get down, I know, it’s time to *get down*.

And nobody gets down like James Brown.


Dating and CRPS

Hey, you wanna hear a funny joke?

A girl with CRPS tries to go out on a date…


Seriously, though, the struggle is real.

I am friendly, attractive (enough), and I still look many years younger than my age. I have (so I’ve been told) an award-winning personality: funny, smart, quirky, blah blah blah.

Curiously, I don’t have any trouble meeting men. I meet people wherever I go (whenever I go anywhere, that is…). Something about my striped tube sock peeking above my boot makes me undeniably approachable. “What happened to your leg?” is an obvious and easy opener. Lonely and in need of social interaction, I rarely shy away from the conversation.

So, let’s pretend that I advance past “my cat and I moved in with my parents,” past “I am middle-aged,” past “I am disabled with a chronic, degenerative, progressive nerve disease,” and someone asks me out on a date.

(Don’t laugh, it has happened more than a handful of times in the past couple years.)

For the most part, men are kind and accepting of my “rules” for an evening’s activity. Nothing physical (read: nothing fun that I would normally suggest like bowling or mini golf), movies are out of the question because I can’t sit down for two consecutive hours, some place not too loud or crowded because noises bother my leg, after my afternoon coma is the best time, and there will be a time limit that will be solely determined by my leg’s willingness to cooperate. This pretty much leaves us with an early dinner. Supper, if you will.

It goes a little something like this:

I’m looking good, feeling good(ish). I fix my hair, I put on make up, a spritz of perfume. I wear a blouse and a skirt in sharp contrast with my tube sock/boot/athletic sock/trainer combo.

He picks me up. He tells me I’m pretty. He compliments my hair. He says I smell good.

We go to a nearby restaurant. He helps me navigate and negotiate my way to our table.

“I have to prop up my leg, does that bother you?”

“An extra chair for the lady, please.” I can’t help but be distracted by the ridiculousness of the situation. How did this become my life? It’s hard to focus on making conversation.

“Anything to drink?”

“Water, please. No ice, but a lot of lemon.” A glass of water arrives with two thinly sliced rings on the lip.

“May I please have more lemon?”

Ugh. When did I get to be so weird and fussy? I have to think about my kidneys, though. What was he saying? I think he made a joke. I should laugh. Ow. My leg. Jesus. Please, oh God. My leg. My leg. I hate my leg. College? Yes, I went to college.

“University of Chemistry, Santa Cruz. I majored in California.” Crap. It’s OK, just giggle and flip hair. Did he notice? Yes. He looks confused. Giggle. “Uhm. Sorry, I meant to say University of California, Santa Cruz. I majored in Chemistry. I used to be sort of smart before I had to take all these drugs. My words get mixed up sometimes.” Giggle more and flip hair again.

Food comes. I become hyper-focused on pacing myself so that I don’t become nauseous. I go through no fewer than four pints of water, no fewer than two full lemons.

We are talking, but I have no clue about what. I have perfected my grimace to appear very smile-esque. He doesn’t seem to notice that I am praying (to God, Jesus, Buddha, Allah, Mary, Moses, Abraham, Zeus, Apollo, Thor, Benny Goodman, and all of my friends, relatives, and ancestors on The Other Side), begging under my breath for my leg to please just stop hurting.

Oh, it’s 7:45. Time to medicate. Pill container comes out. I try to be discreet. So does he. He looks away. I appreciate that.

At some point the bill comes and goes without my knowing. I am in a daze. The world has closed in around me. I feel warm, with the exception of my perpetually cold foot. He helps me navigate and negotiate my way back to the car. He takes me home, er, to my parents’ home.

Next comes the awesomest part of the evening: the goodbye. It has been a pleasant evening. I delighted in getting out of the house despite my leg (everything in my life nowadays is despite my leg). We enjoyed ourselves. I know it’s coming. I want it to happen. Gah. No, no, no, not now. My stupid, God-forsaken leg decides it’s had enough. Full spasm just as this sweet, patient man is leaning in.

“Aw. You’re shaking. Are you nervous?”

“No, I’m not nervous. My leg shakes when it’s tired.”

“Tired? You had it propped up the whole time…”

“Yeah, it’s ok, don’t worry about it.” I try to salvage the moment and start to lean in again.

Nope. Mood. Killed.

“I’ll walk you to the door.”

We hug, kiss on the cheek, I thank him for a lovely time and tell him I hope to see him again. I know he probably won’t call…

…but, sometimes he does call, to be polite, to “check in.”

I’ve made a few “friends.” We text. It’s great. Really great.

But you know what what would be really, really great? A second date.

I Want to Go Home

I find myself, more and more often, sporadically caught in the thought: I want to go home.

It doesn’t make much sense because in every sense, I am home.

What I really think I mean is: I want to go back in time.