Unrecognizable

At the beginning of the week, I spent time with my best friend of over 20 years, her husband of over 10 years, and their 6 month old baby.

These are my people.

I don’t live close to them (I don’t live close to any of my close friends). But, my friend and I traveled extensively together in our 20s and at various points in our lives we lived together. Her husband is exactly what the husband of your best friend should be: a completely separate person, but an extension of the love of a friendship.

I am truly happy when I am with them. I am not guarded. I am able to truly relax and admit who I am. And they accept me.

We talked about books we’ve read, scientific research that interested us, talked about North Korea (I don’t know why, but all of my close friends and I have always been fascinated by North Korea. It’s a thing. A tie that bonds, I suppose.), we ate Mexican food, we made Alexa turn the lights chartreuse and say ridiculous things, we watched episodes of The Dead Files on Netflix. We didn’t do anything “exciting,” just the regular stuff that decades long best friends do.

And the baby. So full of joy despite an impending tooth or 26. He is learning to sit up on his own from laying down. Sometimes gravity gets the better of him. He thinks my nickname (“JayPea”) is hilarious. He liked when I explained sciency stuff to him. He loves Harry Belafonte, but his absolute favorite song is Hey Ya by Outkast.

I temporarily felt like my old self again, even though my CRPS didn’t stop for a second. The visit renewed my hope that I could feel at ease, almost normal, concurrently to feeling everything that comes along with CRPS. If I have the right people in my life…

Before I left, my friend took a few photos of me with the baby.

Today, I went back to my regular swim schedule at the YMCA. Feeling renewed, hopeful, and happy. I talked to one of the regular swimmers, who possibly the closest thing to a friend I have at the Y. I told her about my visit and I showed her the photos of the baby, including one of me holding him.

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I didn’t tell her that *I* was holding the baby; I assumed that would be obvious.

“Wow!” She said, “your friend is really pretty!”

“Uhm… That’s me…” I said.

“Oh, huh. I didn’t even recognize you.”

I mean… I wasn’t wearing a swimsuit, and I was wearing a little bit of make up… But really? She didn’t recognize me?

She has seen me roughly three times per week for over a year. In all that time, I guess she has ever seen me truly smile.

Am I really so miserable now, in my daily life, that I am unrecognizable if I am happy?

 

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On Giving Up: Human Nature

I am astonished when people say to me, “I don’t know how you keep going. I probably would have given up by now.” But, I think I am actually pretty normal in my reaction to my accident and determination in recovery.

You see, as the result of one accident, most people won’t lose their home, their (supposed) life partner, their ability to work, their financial security, their independence, their ability to lead an active lifestyle, their ability to enjoy simple pleasures like a walk on a beach or a movie in a theater, their ability to do simple tasks easily (like grocery shopping or open a refrigerator door), much less every aspect that once defined who they were.

I used to say that I have lost everything because of this accident. I have come to realize that this is untrue. I still have the love and support of my parents. I still have a handful of wonderful friends who are gentle and help motivate me. And I still have my bike. 

So, since most people won’t experience this degree of loss, they can’t imagine what they would do if they were in my “situation.”

It is overwhelming, for certain. It is a scary, for certain. I have very dark days, for certain. I have trouble imagining a life for myself in the future. I don’t have any of this figured out yet. 

What does it mean to “give up” anyway? I know people use it in phrases that are meant as flippant hyperbole reiterating a platitudinous construct meaning “You’re in a tough spot in life. You’re working incredibly hard. Keep it up.” But, let’s think about giving up in terms of the actual words.

Typically when we give up on or quit something, we move on to some other option. But, what happens when you have no other option? When there is no other place to go for safety? When there is literally nothing else you can do? Giving up is a luxury. Giving up is lot more difficult than just an abstract notion of moving on.

Even in my darkest days, I can’t conceive of the only way to truly give up…

As long as I am alive, giving up is simply not possible. I’m not saying that because I think I am some super-human, super-motivated, super-driven CRPS “warrior” martyr. No. I’m not. I, just like everyone else, am simply governed by regular old human nature.

I tried for the first months, out of denial and sheer desperation, to cling to my life as I knew it. Everything (apart from the love of my family and some very dear friends) gradually fell away. It is the loneliest place to be.

I was lost. I still am.

Here’s the catch though: CRPS isn’t life-threatening, and yet I will have it for the rest of my life. That means I have (presumably) over forty more years of this. I don’t have over forty years’ worth of tears. I can’t stay in bed in pain with a laptop on my lap for over forty years. I can’t have almost no social interaction for over forty years.

The permanence is unbearably daunting. I don’t have a choice; I am forced to face it, confront it, and deal with it. Knowing that this isn’t going to go away (on its own or possibly at all), I said what any normal human would say in my situation.

Fuck it. I’m far too young for this shit. I gotta try to figure it out. 

And so, I am doing what any normal human would do in my situation. Day by day, I keep trying to salvage scraps of my life. Because I have no other option, including giving up.

Giving up isn’t human nature.

Anthem: Sometimes, a song

I’m fired up

and tired of the way that things have been…

Don’t you tell me what you think I can be

I’m the one at the sail;

I’m the master of my sea…

My luck, my love, my God, it came from

pain.

 

Cycling Series: 29 Miles

Something very profound happened today.

Today was the day when I’d decided to try 5 laps around the neighborhood. 14.5 miles. The roads are finally clear (enough) of debris from Irma. I started my Strava session and set out.

I thought of a clever name for my ride. I took photos of my bike next to a downed tree and a sign to the energy company (some houses are still without electricity). I was officially Strava-ing, just like the real athletes. And, oh yeah, I also completed my five laps.

I was all set to save my activity. But wait, what’s this? A glitch! Son of a bitch! Strava said I only traveled 2.2 miles. The map was ridiculous. Apparently I hopped fences, cut through yards, took a shortcut through the golf course.

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Crestfallen, I went into the house. I was tired, sweating and texted a friend for moral support. I was hoping to get a reply along the lines of, “aw, it’s ok, you did it.”

Instead, this was the reply:

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Shit.

That means I only had one choice. I had to do it again. I hydrated, ate some gummy snacks, refilled my water bottles, started Strava again, and set out for another five laps.

The session recorded successfully the second time around.

 

 

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Holy shit. I rode my bike 29 miles. Twenty- nine miles!

And then it occurred to me: this was the first time in over three years that my right ankle didn’t dictate, much less inhibit, my activity. My brain didn’t even think about my dumb crippled leg. It wasn’t a factor in the decision to redo my ride. I cried.

My right leg is still very much afflicted by CRPS, but I think I might actually be starting to adapt. I think I might have found a way to hold on to one of the beloved passions that defined who I was. I might be able to reclaim just a tiny bit of my identity. I cried some more.

The one cleat idea was the best idea I will have all year.

Cycling Series: Goals

Yesterday, I rode my bike three times around the neighborhood. Eight point seven miles. I posted a screenshot of my Strava on my Instagram, and in the caption I said that I hoped to break 10 miles on my next ride.

goals

Today, I was feeling pretty good, so I took my bike out again. I went around three times, and considered a fourth. I was still contemplating when I rolled past my parents’ street.

“Well, I guess I’m doing this,” I said aloud to myself.

And then followed with a tentative “I can do this.”

And then followed with an assertive, “I can do this.”

And then I did it. Eleven point six miles.

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I set goals. I attain a goals. That’s how I roll.

Ballet Series: The Boot

CRPS doesn’t seem to be going away any time soon, so I have to find ways to continue to live my life. Since March, I have now taken five beginner ballet classes at four different dance studios in New York City, from two different teachers.

My foot in my boot, my cane in my hand, I hobbled up to the registration desks. “I’d like to sign up for class…”

Nobody ever batted an eye. I simply registered, went to the studio, folded my cane, carefully removed my boot, strapped my foot into it’s brace, and proceeded to stretch and warm up for class. It is a very relaxed, natural process.

But, if I casually mention taking a ballet class to a friend or family member, I’m met with a look of confusion.

“Aren’t you in a boot?”

Yes. Yes, I am. However, I am no longer acutely injured. The boot helps maintain stability and provides compression to my foot. It also (supposedly) is helping to correct the lateral rotation of my lower leg.

The deal is that I need to support my ankle and arch, but immobility is very bad for CRPS. It is a fine balance. I need to support my ankle and arch in order to prevent injury while retraining my lower leg how to move.

“Doesn’t it hurt?”

Yes. Yes, it does. It is excruciating, in fact. However, the pain from CRPS is not indicative that anything is wrong (apart from CRPS itself…). The pain is a trick. The pain might never go away. So, because staying inside my parents’ house, crying because of loneliness and horrific emotional and physical pain is a completely unacceptable lifestyle, I must to find ways to accommodate CRPS and work through it.

Desensitization is a major part of my therapy “homework.” I am supposed to surround the pain with pleasant thoughts. I am not supposed to fear or wince at the pain.

My happiest happy place is in a dance studio. I take only from teachers who know me well and are familiar with my injury. They help keep me calm. They encourage me, but don’t push me beyond my physical limits.

Going back to ballet is probably the most empowered I have been in more than three years. My doctors trust me. My instructors trust me. I don’t trust CRPS, but I trust myself.

boot

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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