Falling Short

I’m tired.

And I’m tired of feeling tired.

I really do try to just keep on trying.

But. Fuck. I’m tired.

Life with CRPS is exhausting. Every nerve in my right leg from the knee down is firing at this moment. The buzzing is driving me crazy. The crushing internal pain takes my breath away. My toes are contorting on their own. My skin is on fire. My leg is heavy, my foot, a cinder block.  You know the drill. By now, we all know the story. Yet somehow, knowing about all of the same old bullshit doesn’t make it go away.

There are a million things I would rather do right now other than sit on my bed with my leg elevated complaining to you about (still) having CRPS.

I tried to ride my bike today. I had to stop. I don’t have the energy to go to the pool to swim. Besides, I know the water temperature would cause my leg to flare worse.

I would really like to meet a friend for lunch. Or, maybe take a trip to the beach to read books on the sand and swim in the ocean. All impossibilities right now.

I know these are the worst of days. I am days away from another injection. I am counting the days. I am counting on that day…

I know a bit of relief is just around the corner. I know my symptoms are at their peak right now. I know the edges soon will be smoothed down to make life with CRPS tolerable-ish again for a little while.

I just have to bide the time.

But. Jesus. It hurts. And I’m tired.

I’m really tired of this. 

 

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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).

DanceParade2014.1.edit

  • 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

Extraordinary Machine

So there’s this dude. He sometimes masquerades as my friend.

He does ironmans (supposedly… I’ve known him for well over a year and have yet to see him complete an event. Registered, yes. Shown up and participated, not yet.). He is always “training” (again, supposedly…). And, knowing him has pushed me to keep trying to ride my bike at a faster pace and for longer mileage.

I really, really, really miss having a riding buddy. 

 So, I am definitely not in any shape to ride 50+ miles at a 19+ mph average speed. But, I can go 25-30 miles at 16 mph average. And certainly, for a “friend” this dude might condescend… right?

After registering for my half-metric ride, I let him know. I also told him about the route the ride would take. I also asked a favor of him: “will you please ride the route with me before the event so I am familiar?”

“Of course,” he said. “Whatever you need,” he said.

The dude had over two and a half weeks to carve two and a half hours out of his schedule to do this. It was around his neighborhood. I was planning on putting my bike in my car and meeting him wherever was convenient. And, in theory, supposedly, he regularly goes on long rides anyway… What’s the big fucking deal if I tagged along for 36 miles of a ride?

He was getting a bike shipped to him. His other road bike was on a trainer and he didn’t want to take it off. Fine. Whatever. Then the bike arrived. He assembled it and immediately took it out for a ride. That was on a Friday. On Saturday morning, I texted him, “want to ride bikes?” “I can’t today.” Fine. Whatever. On Sunday, one week before the charity ride, he went out on some 50 mile solo ride…

I called him on it. So, like what? Am I supposed to text this dude every morning on the off chance that he wants to invite me along? Fuck that. That’s not the way my friends work. My friends are actual friends; they keep their word and follow through on promises. My friends and I show up at one another’s house with bagels and coffee and say “c’mon, let’s go.” (Or we used to, back when I lived in places where I had true friends…)

But as I told you before, this dude only masquerades as a friend.

Like a not-so-evolved, emotionally immature (dare I say it? OK, I’ll say it) man, he got defensive, made excuses, over-reacted, and called me names. I laughed at him for his ridiculous reaction (yes, we are still talking about riding bikes), which apparently made things worse.

Hahahahaha. Sorry. Hahaha. Not sorry. Hahahahahaha.

He decided the best course of action would be to give me the silent treatment for over a week (actually, I’m pretty sure I am still in my little “time out” but I just so happened to run into him today. It was super awkward…).

He knew when the charity ride was. He knew I completed it.  Didn’t ask how it went. Didn’t put aside the silent treatment to pretend to care. And then, the cherry on the shit for a friend sundae: via Strava, I saw that he followed *the exact course* with a buddy the day after the charity ride. What. The. Fuck. Yo’?

I will never ever let him know that I know he did this little ride with his friend. That is a secret you have to promise to keep between you and me…

Fired up yesterday, I took my bike out.

Riding my bike is emotional therapy for me as much as physical therapy. I rode as hard as my body would allow. I stayed out as long as I could. I climbed hills. I went on tiny residential side streets that allow me to go fast. I went 21.2 miles. I increased my average speed by  full mile per hour (despite climbing 50% more than usual). I scored SIX (6) QOMs on Strava.

So yeah. The moral of the story is not that this guy is a dick and I should be angry at him, but that this guy is a dick, I should be angry at him, and I should go out and kick even more ass in spite of his dickish behavior.

“Be kind to me, or treat me mean. I’ll make the most of it, I’m an extraordinary machine.”

Meanwhile, Jesus. I sure would just like to find someone who wants to ride bikes with me instead of trying to create a Shakespearean drama out of it. It’s just riding bikes. It’s fun. Jeez.

 

Extraordinary Machine by Fiona Apple

I certainly haven’t been shopping for any new shoes
And
I certainly haven’t been spreading myself around
I still only travel by foot and by foot it’s a slow climb
But I’m good at being uncomfortable so
I can’t stop changing all the time.

I noticed that my opponent is always on the go
And
Won’t go slow so’s not to focus, and I notice
He’ll hitch a ride with any guide, as long as
They go fast from whence he came
But he’s no good at being uncomfortable so
He can’t stop staying exactly the same

If there was a better way to go then it would find me
I can’t help it, the road just rolls out behind me
Be kind to me, or treat me mean
I’ll make the most of it, I’m an extraordinary machine…

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.

 

Waking Up in the Afternoon

By now you know that I have to take a bunch of pills throughout the day, all of which make me fall asleep.

Waking up in the afternoon is often more difficult than waking up in the morningtime. For example: today. Right now.

Coming out of my midday fog, I find myself in a cool, dark room on a hot, sunny day. I am emerging into a dreamlike reality, watching an obscure Youtube video that all too perfectly mimics my current mental state.

(I am not completely unconvinced that Lhasa de Sela isn’t one of my spirit guides.)

Here Lhasa is, lulling me out of my lull, singing my love-life story, so honestly and so sweetly, in my preferred 6/8 time signature.

Maybe I am still more dreaming than awake.

A low camera, never quite focusing on my beloved storyteller, pans the on-looking crowd dressed in scowls, judgmental half-smiles, and dark clothing. Nearing the end of the cameraman’s circle of judges is a photographer. Not looking too unlike myself before all the sun, she smiles more truthfully than the others and is the only one in the crowd who bothers to try to sing along. She manually advances her film. She appears to be shooting with what I swear is a Canon AE-1 , which just so happens to be my first and all-time favorite SLR, trumping even the modern day ultra-uber-DSLR’s.

This video is all too similar to something my brain might conjure.

It is hard for me to know where a dream ends and real life begins again, especially in the afternoons. Familiar music via Youtube usually helps bridge the gap.

 

Vignettes: Neurologist Check-up

In a good news/bad news situation, I always prefer to hear the bad first. So, this post isn’t necessarily written in chronological order. It’s OK. It doesn’t have to be. 

I always try to piggy-back my appointments in New York so that I don’t have to make multiple trips for singular appointments. Luck is usually on my side, but sometimes it just isn’t possible. Over the next five weeks, I have a series of three trips that I have to make for single purposes.

Last Monday was the first trip. A check-up with my neurologist. This is the first check-up I’ve had in nine months where I hadn’t had a nerve block just prior to the appointment. And hey, guess what? I still have CRPS.

I arrived to the appointment about 45 minutes early. Which meant I had to sit and wait. Which my leg hates. So, like a obstinate child, my leg decided to have a full-blown temper tantrum. By the time of my appointment, my leg was in a state of uncontrollable dystonia, making it difficult for my neurologist to fully assess the condition of my condition. But my leg was cold, and a different color, maybe not as swollen, blah, blah, blah. He asked where my worst point of pain was. Under the medial malleolus? Yes. And the center of the top of my ankle. And about two inches above my lateral malleolus on my fibula. And at the top of my fibula. And sometimes behind my knee. “Uh, huh. Yes,” he said, “those are the major nerve junctions…”

My doctor then reviewed the timeline of all of our visits in order to determine my progress, if any. We agreed that the medication and the pain management treatments help reduce some of the CRPS symptoms.

We had a discussion about baclofen. He asked if it made me sleepy. I said yes, but it, combined with the diazapam, actually controls the spasms. He raised his eyebrow as he looked at my shaking leg. I said I didn’t take my dose of baclofen yet because I fall asleep within 10 minutes of taking it. “Ahhh. And so you wanted to be awake for the appointment?” We laughed.

Then he quoted Voltaire. (I know I’ve said it before, but I will say it again. I love my doctors so much. Because they do things like quote Voltaire.)

“The art of medicine consists of amusing the patient while nature cures the disease.”

Yeah. Basically, he said there’s not much that he can do for me at this point beyond refilling my prescriptions. He was frustrated that he isn’t treating me. His frustration is with CRPS and how the disease has a mind of its own. He said that I should keep seeing my pain management doctor and come back to see him for another check up in 3 months.

While trying to fumble my shaking leg into its boot, I asked, “so, is this my life now, for the rest of my life?”

He looked down, he sighed, he looked up, he looked into my eyes. He said, “for now… CRPS takes hold, but at some point, sometimes, usually after many years, it decides to ease up. You first came to me four months after your injury. We were able to treat it early, and that can be promising.”

So yeah…

In other, happier news, on Monday evening, I took another ballet class! This was my second class since my accident almost three years ago. The first was last March, just after I’d had my nerve block. Monday’s class, even though it was the same “absolute beginner” class I’d taken two months ago, was exceptionally more difficult. My leg was not cooperating, and I had trouble standing on the right foot. Releve’s, and most certainly jumps, were out of the question. But who cares. I danced again. Sort of.

Seeing my teacher, interacting with the other students, hearing the brilliant pianist play for us, all helped heal aching pieces of my psyche. My teacher lives close to where I was staying so we rode the train together and were able to catch up. She gave me the best hug I’ve had in a while. I told her when I would be back in town again and that I plan to come to class again.

I was staying relatively close to Rockefeller Center, and I really wanted to see Jeff Koons’s new installation, Seated Ballerina. I walked down Sixth Avenue, past Radio City Music Hall, and wouldn’t you know it? NYU was having their graduation. Apart from the ensuing chaos, it was a pretty spectacular scene. Coincidentally, Columbia’s medical school was also having its graduation on the same day.

The hope that filled the city air that day was almost tangible.

On Praying

(Preface: I have a bad attitude about people who force their religious beliefs upon me. I have a bad attitude about their rudeness, righteousness, and arrogance, not their religion. I have my beliefs that are just as firmly rooted and just as true to me as anyone else’s are to them. I take issue with the assumption that they are “right” and whatever I believe is either the same as them or “wrong.” My religion is deeply personal and is probably not the same as yours.)

Basically. Praying. I don’t get it. Hear me out.

If I get what I want, then Jesus, or some derivative of a god-like creature governing the Universe, is good and loves me. If not, it is because the Almighty Masterful Force wants to teach me a lesson.

If the Great Master Of All There Is And Ever Was already knows what is “in my heart,” then doesn’t He already hear my cries, my pleas, my desperation in every time I yelp or cry or say (uncontrollably, aloud), “Jesus Christ, my fucking leg…“? Do I really need a holy hotline?

Oh, right blasphemy. It’s bad. My bad. Sorry.

I admit it. I am very sarcastic about praying. Specifically, I find the notion of praying for something I want ridiculous. It seems all too reminiscent of Christmas, 1983 when I really, really, really wanted Santa Claus to bring me a Cabbage Patch Kid. I wanted her with all of my heart. I felt like I would die if I didn’t have her. And now, is wanting my shaking leg to stop, wanting the pain to stop, wanting to work again, wanting to go out with friends for a beer or coffee or milkshakes, wanting my suffering to end, is any of it any different than that Cabbage Patch Kid? It’s all just stuff that I want, and want with great desperation.

God isn’t Santa Claus.

(Although, I know some people who would argue that the ideas are one and the same. Santa was an invention to reign power over children to force good behavior, and some people theorize that the notion of gods and God reign power over and placate The People to maintain order of the masses. This is a topic for debate on someone else’s blog…)

Anyway. Everyone struggles. Everyone suffers. Welcome to what it’s like to be a human being on the planet Earth. CRPS is the very worst kind of bullshit fuckery, definitely, for sure. But, when I stop to think about it, truly, in the grand scheme of my life, all of these endless days of endless suffering make me so incredibly grateful for all of the very, very good days I’ve had in my life. I would be petulant and childish if I felt anything but gratitude for the opportunities that I’ve had. I won’t cry about the unfairness of my life or question, much less place blame upon, some unprovable being. As bad as this is, it could be worse. I know it could be much, much worse. Beneath my hatred of every second of this, lies gratitude. Sometimes you don’t deserve what you get, other times you get what you don’t deserve (and how cruel to believe in an idea of some puppet master tallying up the score…).

And then there are people like the woman who wanted to “lay hands” on me last Tuesday. She said she has “powerful prayers.” Um, what? So, like Jesus listens to her more than other people? Does Jesus like her better than other people? No. Jesus loves all the little children. I am exceptionally put off by someone who wants to use me to make a big public prayer production. Especially if that someone considers herself to be some kind of super-healing-ultra-Christian. Jesus supposedly spoke out against that kind of behavior, so…

(My attitude isn’t just toward “Christians;” I don’t want you to get the wrong idea. I don’t discriminate. I’ve turned down Reiki “experts” for similar reasons. Pretty much, I don’t want to be physically touched by strangers, I don’t want to call any more attention to myself or to my leg than it already commands, and I will not pander to the whims of someone who, despite knowing nothing of me or my disease, thinks they hold the secret resolution to all of my troubles.)

The truth is that I am in a helpless situation. People feel powerless and perhaps feel like prayer is the only possible thing that they can do to help. I understand. It’s an act of kindness. I appreciate it.

So, if you feel like praying for me will make you feel like you are helping, by all means, do it. You may pray privately and quietly for me to any religious/spiritual force you believe in. And if you happen to pray to a Santa-like god who grants wishes, I will tell you what I want or what think I need in my life (but please don’t ask me to sit on your lap).

I really don’t need any further prayers for my leg.

(Jesus knows about my leg. If he didn’t oversee my accident, and every bit of the subsequent aftermath, he has received emails, direct messages, and prayers from every sect and denomination of Christianity. Allah also knows about my leg– It’s true. I have several Muslim friends, and I befriended a very sweet Egyptian couple on a plane last year– Jews pray for me. I’ve had rocks stacked and crystals rubbed for me. I’ve thought about pure white healing light. Someone even supposedly cleansed my aura. I am now quite confident that every supposed governing energy force in the Universe, every god, and God know about my leg.)

What I need are good, trustworthy people to stay permanently in my life, providing deep emotional support, light-hearted laughter, and an occasional hug. I need resolution with respect to certain legal situations that I’m not currently allowed to talk about, and if those resolutions could be in my favor, that would be very helpful. Those are my two wishes, I’ll donate the third wish to you.

Thank you.