On Who I Used to Be

When people ask me what I “did” before my accident, the quick version is that I was a photographer, graphic designer, dancer, artist. Faces drop and the conversation usually drifts to my recovery and how great I look.

I am rarely asked about who I was, and how my life, much less my outlook on my life, have changed since I became a prisoner to CRPS.

Here’s just a quick bulleted list of the types of things I did that represented who I used to be.

  • I wore a funny outfit and marched (danced) down Broadway in New York City’s annual Dance Parade. I was thrilled to be chosen to carry the banner for my favorite pointe shoe maker (Grishko). This parade was about two weeks before my accident (This photo makes me cry. I stare at my right foot, pointed straight ahead, stomping with a confident, unsuspecting stride).

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  • I used to love going on long bike rides in the mountains. I only recently joined Strava to keep track of my activity. And so, all that remains of the routes of my days spent riding hundreds of miles are two screenshots of screenshots of one metric century ride I rode in Reno back in 2009. 101.5 km, 4379 ft. of climbing. This is just one blurry example, but I suppose it will have to be enough to get my point across.

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  • I used to take flying trapeze lessons. This is a video of the first time I did my one-handed take-off. I practiced first before executing it with a catcher.

For some reason, I can’t find any videos of my trapezing when I had a catcher. It happened though. See?

  • I traveled to the Republic of Macedonia on a press trip. I secretly, but intentionally, followed steps taken by Allen Ginsberg in 1986 when he was invited to Struga’s annual poetry event. I went to Struga. I found his plaque.

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I even found the cafe in Skopje where he, as legend has it, emphatically stood upon a table and recited his poetry. I talked to the owner of our tour company about the possibility of an exhibition in the cafe of my photographs that I had taken during my trip. He delighted in the possibility and we started planning. Less than nine months later, I had my accident.

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  • I used to jump and do acrobatic tricks at the beach. Yeah, no, really. It was a thing I did.

… … … … … … … …

I… I can’t.

I’ve been working on this post for almost a year. I can’t keep working on it. I can’t keep it any longer in my drafts folder. I could go on and on and on about all of the wonderfully happy and fun things I did in my every day life prior to CRPS. I can keep inserting photos from trips I went on. Videos of fun things I did. It would never end because every day of my life was an adventure. I was able to make choices. I was able to choose to find the means to pursue anything and everything that would make me happy.

But now (as I’m trying and trying and trying to simply fucking finish this stupid post), I can’t help but look back on such happiness, such freedom, and become overwhelmed by grief. I’m sobbing as I type this now (inclusive of guttural utterances and an uncontrollably oozing face).

I used to love my life. And it was all taken away from me. And I fight every day to cling to the tiniest scraps of what is left of myself.

And I guess that’s all I really need to tell you about it.

I can smile at the old days
I was beautiful then
I remember the time I knew what happiness was
Let the memory live again…

I must think of a new life
And I mustn’t give in…

It is so easy to leave me
All alone with the memory
Of my days in the sun…

Look, a new day has begun

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What is wrong with people?

Something has really been bugging me since my five minute swim.

I know what you’re thinking… but that’s not it. I’ve actually managed not to chastise myself (too badly) about it.

The ulcerative colitis dude was swimming in the lane next to me and saw me struggling. When I stopped swimming, he stopped too. You know, to talk. It seemed nice enough. I though he was being kind, so I pandered when I really wanted to retreat into breathing techniques and transcendental meditation.

“Are you OK?”

“Yeah, it’s just a bad day. A bad day.”

“Are you in a lot of pain?”

“Yes.”

“So… Do you take medication for that?” He got some kind of weird twinkle in his eye.

“Uhhm. Yuh. I have medication that I take…” I trailed off. I was dizzy, my vision starting to close in.

He didn’t seem to notice or care as he launched into a laundry list of “do you take” controversial med-x, controversial med-y, controversial med-z, controversial drug group-a, controversial drug class-n… He listed no fewer than 8 medications and groups/classes of medications.

It pissed me off. He seemed excited thinking he had tapped into some hot-button topic plaguing our modern society.

Meanwhile, I was trying not to vomit from the pain in my leg. I got out of the pool. I walked away. He was still talking.

Halfway to my deck chair, I turned back. He was still just hanging out at the end of his lane, waiting for me to indulge his curiosity. I disappointed him.

“You know, I’m not happy or proud about the medication I have to take to control my CRPS. I have very good doctors who are trying to get me to remission.” I hobbled the rest of the way to the chair.

I am actually quite proud of myself that I mustered the self-control not to snap: ‘Hey buddy, it’s none of your fucking business!’

Jesus. If someone I knew, even peripherally from the YMCA pool, was in obvious pain, I would be more concerned with their well-being than their prescriptions.

(I’m very, very sorry about the explicit song I am about to insert… but… seriously…)

Dude, what the fuck is wrong with you?!

 

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.

Involuntary

I wanted to swim this morning. My leg and foot were a little more obstinate than usual. About 11:00, I realized why. The daily Floridian summertime thunderstorms started early today.

Last night, I told you a little about the spasms starting again in my foot. At the present moment, these involuntary muscle contractions are making any kind of activity almost impossible.

And so I’ve been sitting here, with nothing to do, staring at my foot for a few hours. By this point, I have disassociated myself from my foot. It’s quite fascinating to watch as an outside spectator.

I’m not going to talk too much about how it *feels*… Let’s just say that it is more than a little bit uncomfortable… I have said in the past that this part of my CRPS feels like a boa constrictor is underneath my skin.

Admittedly, I am bored. And I’m pretty sure I have been staring at these slow arhythmic contractions in my foot for too long today, but it kind of looks like a strange, breathing, non-human creature. Possibly a sea creature… Or maybe it is about to hatch a new crop of gremlins

Here, I made a little video to show you. Captivating, no?