Uh Oh…

So there I was again. At the goddamned YMCA for my daily swim.

Some Jesus freak, who first Jesus’d me back in December, stopped me in the hallway this morning (by physically blocking my path to the pool), in order to tell me how much “better” I look. And then, she proceeded to have a great idea: “You should open your own ballet studio!”

Go ahead and twist that knife the Universe shoved into my back, why doncha?

Obviously, she has never been a business owner, or worked tirelessly, trying to keep a business afloat.  Let alone tried to do it while crippled, in unyielding pain, and on drugs. “Whatever.” I grumbled at her, “You can see that my leg is shaking. I have to get in the water.”

I walked away.

I limped out to the pool deck.

Some overly cheerful aquaciser, full of saccharine and straddling a noodle, yelled out to me “I like your shirt!” 

I was wearing whatever shirt I slept in. I looked down: a wrinkled  green tee that says “ACHIEVER” on it.

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It’s a reference to The Big Lebowski. It’s a reference I knew this lady didn’t get. I scoffed. “Yeah, thanks.”

She then chimed (in a sing-song sounds-like-someone’s-got-a-case-of-the-Mondays tone of voice),”Uh oh, looks like you’re in a bad mood today.”

Oh no, she di’nt… “I’m in a bad mood every day,” I snapped back.

She then tried to argue that I am not actually in a bad mood every day because I don’t look like I’m always in a bad mood…

I kept walking, but started uncontrollably muttering a bunch of stuff under my breath walking to my deck chair. I probably bore an embarrassing resemblance to  Yosemite Sam. “As if I’m supposed to be in a good mood for you” … “Who are you to argue with me about how I feel!?”… “You think I want to come here? That this is fun for me?” … “How dare you judge me based on how you think I look!”

And punctuating the half out loud rant: a hearty “fuck you, lady.”

She may or may not have heard me.  I don’t think I care.

Ballet Series: What’s In My Shoe?

This is a ballet technique shoe.

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There really isn’t much to it. Canvas, some elastic, and two small pieces of leather for the sole.

Needless to say, there is no support in a ballet technique shoe. A dancer’s feet and ankles must be incredibly strong. The foot and ankle must always maintain stability. During some steps, a dancer’s ankle must absorb up to 14 times her body weight.

So, what’s a dancer to do when her foot, ankle, and lower leg stop functioning properly? Crying and pouting are certainly always valid options, but they don’t help rebuild someone who has become a partial person.

Dancing has been my identity since I was in preschool. In my tweens, the only disciplinary threat my parents ever gave to me was to “take away” dance. In a seemingly overly dramatic retort, I cried, “I would rather die than stop dancing.” I never stayed out late, I kept up my grades, I did chores, I maintained peace with my brother, I never missed a dance class. Not dancing was not an option. It still isn’t. Despite being crippled by CRPS, I have to maintain the hope that I will eventually find a way to accommodate my limitations. 

My right foot is now completely flat. The muscles that hold up my arch simply don’t work. I wore an arch support insert inside my sneaker when my doctor told me to try to wear a shoe on my right foot (predating the boot that has become a semi-permanent fixture to my life).

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It occurred to me one day a few months ago, during a brief moment of clarity, that if I could put the insert into a sneaker, maybe I could put the insert into a ballet slipper.

I have roughly 15 ballet technique shoes that all once belonged in matching sets of twos. Over time, they all ended up in a bin, hibernating under my bed. Some have elastic sewn properly and neatly in an X across the arch. Some have no elastic. Some have elastic sewn in a giant loop that I’d cross and bring under the bottom of the shoe. Some have two half sewn elastic pieces that I’d tie in a knot across my ankle. The elastic sewing situation depended solely on how lazy I was at a given point in time.

For my CRPS foot, I chose a shoe with the elastic in a giant loop.

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The insert fits perfectly inside. It cushions my heel and keeps my arch lifted.

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…and then there is the brace. A friend casually commented to me recently about my “cute black sock.” Well, that “sock” provides a great amount of stability to my ankle.

Take off your shoes and stand on one leg. Go on, do it.

Do you notice how there are lots of tiny adjustments in your foot and ankle as you maintain your balance?

Well, these tiny adjustments do not happen in my right foot. None of those little muscles function on their own. I do countless exercises with my therabands. I have been working on a balance board for over two and a half years. I swim. I ride my bike. I do everything that I am supposed to do. And still. Nothing.

If I want to attempt standing on my right leg, I have to have my body perfectly aligned, and then I just kind of hope I can keep myself upright. The one thing I can rely on: my leg and ankle will give out on me without warning.

So, I wear a brace in an attempt to maintain stability that my ankle does not provide for itself.

…and then I attempt to “dance.” This set up is not comfortable. Nothing about CRPS is comfortable. Then again, nothing about ballet is comfortable either.

I have no interest in comfort because I am (safely, slowly, steadfastly) fighting to keep a promise I made to myself a very long time ago: never give up this fundamentally crucial piece of who I am.

Grumpy

Like most dads, my father always knows exactly the right thing to say. Except, my dad always knows exactly the right thing to say to send me into a tailspin. For example:

“You seem to be a little bit grumpy today,” he said.

Grumpy? No shit, Sherlock, but the “little bit” is a little bit wrong. If I were to rank myself on the grumpometer, I’d say, right now, I’m in the Really Fucking Grumpy category. Let’s take a little look at my day and think about why I might not be a chipper little chipmunk, shall we?

I woke up and went to the pool for a swim. Today was the sixth day in a row that I swam. I don’t normally swim on Saturdays, but I have to travel on Monday for a neurologist check up on Tuesday. I didn’t want to be out of the water for four days, so I went.

There was a lot of testosterone in the pool this morning. And I’m not saying that smugly. In fact, normally, it would be a good thing, but I just wanted to take it easy today. The lap lanes were all filled with men (hence testosterone…), all very good swimmers. One guy, a kid really, obviously an actively competitive swimmer, did an hour of IM sprints. It was insane. The other men were all very fast. The water was extra splashy and full of energy. It swept me away. I felt myself going fast. I kept trying to slow myself down. I was definitely not trying to compete at all… I promise… But, I was consistently doing 45 second 50’s, or 1:30 100s, which is, like, an actual athlete goal pace for long swims. I wanted to swim less than 40 minutes, but I got confused on the math (mornings are hard). I got in the water at 9:20, and somehow I thought that if I swam until 10:15, I would swim for 35 minutes.

(Yes, I really am that stupid on these drugs. I have not always been this stupid. I was a fucking chemistry major at University, concentrating in biophysical chemistry, for crying out loud. I can diagram the metabolic pathways of all of these dumb medications I have to take, but I can’t tell time. It’s awesome.)

According to my watch, I swam at full intensity for 53 minutes. I burned 527 calories. That was far too long, and much too high of a calorie burn. I am still 10 pounds underweight, and on my sixth day of exercise, putting in a long swim sets me up for a flare. Furthermore, it is difficult for me to replenish those calories because the drugs make me nauseous and kill my appetite.

My leg spasms lasted a full hour after I finished the swim.

When I came home, I immediately started a load of laundry so I could pack clean clothing for my trip. I always used to say that I hated doing laundry, but I had no idea what the word “hate” truly meant until I had CRPS. Here is how I now do laundry: I load my clothes into a laundry bag. My leg won’t tolerate the extra weight if I tried to carry the laundry, and I am afraid of the bag bumping into my CRPS leg. So I step with my left leg, drag the bag with my left arm while I drag my right leg. All the way across the house. Loading the washer on one leg used to be exceptionally challenging, but now that I am aces on my left leg, it is only moderately difficult. For a fun challenge, you should try it sometime.

While the washer ran, I made myself an everything bagel with butter, egg, and cheese, I felt sick, and I showered (sitting down, because, you know, CRPS). I changed the laundry from the washer to the dryer, again, still, on one leg (if you want a great core and quad workout with some hammy’s and glutes thrown in, try moving your laundry from washer to dryer while only standing on one leg).

Then, the litter box. Scooping the box and replenishing the litter is like, no big deal, right? CRPS raises the difficulty level of every stupid simple thing to a level 10. Don’t believe me? Take the litter box challenge: you have a brand new 25 lb box of litter, and one foot/leg cannot touch the ground at any point in the process. You get bonus execution points if you don’t spill.

And I have a stack of forms to fill out before my final hearing for social security disability (can’t talk about it…). I’ve had the forms for an embarrassing amount of time. Old Me would have focused, finished the forms, and returned them with the next day’s mail. CRPS Me keeps getting distracted. CRPS Me gets confused easily. It took me several days to realize that I am the claimant. Yeah, duh. I’ve been doing a little at a time, and today, I told myself I would finish. No excuses.

But, this means I had to push my afternoon doses back so that I didn’t fall into a 2 hour coma. This has its own implications though. I am supposed to take pills at the exact time every day. My body relies on them now. If I am late, I get fidgety, sweaty, and oh, what’s that you say? Yeah, that’s right. I get grumpy. But, anyway. The papers are now complete. But, just not yet in the envelope.

And back to the laundry. Ugh. I loaded my laundry bag from the dryer, on one leg, and dragged it back across the house. With my right knee resting on my bed, I dumped the bag, folded, and separated the clothes to wear and clothes to pack for my trip to my doctor.

(I complain about my laundry situation now, but it could be worse. It has been worse. At the time when I had my accident, I didn’t have laundry in my building, much less in my dwelling. I took my laundry, on crutches, in the dead of summer, down four flights of stairs, four blocks to a laundromat, and back up four flights of stairs. So, if you think I’m “grumpy” now…)

And all afternoon, it has been thunderstorming. My leg is not friends with thunderstorms. The rain makes my dumb leg feel like it is imploding. The buzzing is louder and more electrifying. My foot feels like a giant sponge that soaked up an ocean of ice water. The skin is feeling crispy fried…

And all of this isn’t necessarily what is making me the grumpiest. The main reason why I am up in a frothy grumpy lather is because I have the cognitive ability to analyze my day. Let’s take out all of the verbose complaints and descriptors. Here’s what I did today:

  • exercised for less than an hour
  • ate lunch
  • changed the litter box
  • did one load of laundry
  • filled out one half of one page of a form that was sent to me 4 weeks ago
  • thought about packing for a two day trip
  • endured a thunderstorm

It’s 7:00 in the evening, and this is what I have to show for my day. How can I not judge my underwhelming level of productivity? How can I not be angry at my leg for making everything in my life exponentially more difficult? How can I not be angry at myself for somehow allowing my leg to slow me down and hinder me to this extent? How can I pretend to be unaffected by the number of days that have slipped, not to mention the number that will continue to slip, away from me, just as today did?

And then, in the midst of my wallowing self-pitying self-judgment, it is pointed out to me, by my dear old dad, that I am, in fact, grumpy.

Long Promised Road

So hard to answer future’s riddle
When ahead is seeming so far behind
So hard to laugh a child-like giggle
When the tears start to torture my mind
So hard to shed the life of before
To let my soul automatically soar

But I hit hard at the battle that’s confronting me, yeah
Knock down all the roadblocks a-stumbling me
Throw off all the shackles that are binding me down

Sew up the wounds of evolution
And the now starts to get in my way
So what if life’s a revelation
If the mind speaks of only today
So real, the pain of growing in soul
Of climbing up to reality’s goal

But I hit hard at the battle that’s confronting me, yeah
Knock down all the roadblocks a-stumbling me
Throw off all the shackles that are binding me down

Long promised road
Trail starts at dawn
Carries on to the season’s ending
Long promised road
Flows to the source, gentle force, never ending, never ending

So hard to lift the jewelled sceptre
When the weight turns a smile to a frown
So hard to drink of passion nectar
When the taste of life’s holding me down
So hard to plant the seed of reform
To set my sights on defeating the storm

But I hit hard at the battle that’s confronting me, yeah
Knock down all the roadblocks a-stumbling me
Throw off all the shackles that are binding me down

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 How I Look

I have been writing and re-writing this post for almost two months. You see, I am having a great amount of difficulty articulating the discrepancies between the way I look, the way I want to look, the way I feel, and the way I want to feel. My sense of self is in a constant state of flux and confusion. I have almost completely separated my emotional self from my physical self, and neither are accurately portrayed by my appearance.

If, five years ago, you had shown me a photograph of the way I look now, I’d have thought I look pretty darn good. I am thin, I am tan, I am relatively muscular, my hair is sun-bleached and blonde-streaked. With my boot, I could easily pass for an injured outdoor athlete.

My day to day life involves oscillating between a state of unconsciousness and activities designed to try to make my leg function properly again. Those activities are solely responsible for the way I look.

For the most part, I look the way I do because of swimming. The pool at my YMCA is outdoors. I swim without a cap. Swim caps drive me nuts; the result is chlorine bleached hair. I try to be in the pool about 9:30 am. I swim between 30 and 60 minutes. I burn a lot of calories and have built up some muscle mass. After the swim, I have to sit poolside for about an hour while my leg settles down. I wear SPF 50 sunblock, but spending 2 hours in the sun 5 or six days a week for many, many months has given me a “healthy glow.”

My feelings regarding my appearance vacillate between resentment toward strangers because their perceptions of me are that I am healthy, capable and fit, resentment toward myself because of the unbridgeable discrepancy between how I look and how I feel, and a complete dismissal of my physical appearance because CRPS becomes all-consuming.

Admittedly, the way I look provides a convenient smokescreen. It might actually be the image I try to project to strangers. It secretly might be the image that I try to project to friends, family, and sometimes to myself. It helps me cling to the idea of who I used to be and who I want to be. The reality of how I feel, and how my leg looks upon closer inspection, is too much to bear. I have not fully accepted CRPS into my life, even though it is my life now. I am not yet able to fully identify as a person with a debilitating lifelong condition.

But, my appearance is a lie.

The perception of health is an unfair judgment. I cannot live up to the expectations from others, and from myself, about what the capabilities should be of somebody who has my physique.

Resentment comes when people tell me that I look “better.” Resentment comes when I look in the mirror and see a body closely resembling my old life’s ideal. Outwardly, it reflects the way I used to feel before my accident: sunny, active, athletic, strong, healthy, and full of energy.

However, the true reflection is of all the exceptionally painful work that I have done over the past 2 years and 10 months trying to make my leg function and stop hurting. The reflection I see in the mirror is one of failure, my failure to overcome CRPS and stop it from taking everything I had, and was, away from me.

So, the next time you see me, please try to see me as I am. Try to look past the tan skin and thin, muscular arms; try see my struggle. Try to see the veneer of frustrated sorrow just below a cordial smile. Try to see my crumbling psyche, delicately buttressed by sarcasm, bad jokes, and unfounded hope. And, if you are feeling particularly kind, please try to help save me from my spiraling internal conflict by not commenting on how I look.

Nothing’s As It Seems by Gordi

There are whispers in the air
That tell the stories of our wildest dreams
But leave us empty in despair
But on our own, so everything is as it seems now
When the dark comes so harsh to life
And you can’t shake the shadow above
That’s following you out into the night
Paint your face on with a smile, say to them don’t worry
Carry on just for a while, you’ll get lost and hurry
Can you see it now?
That nothing’s as it seems somehow

And everything you’ve ever lost
Must have a reason it is never found
Convince yourself you’re better off
And you’ll be fine
Or at least that’s how it sounds like
When the dark comes so harsh to life
And you can’t shake the shadow above
That’s following you out into the night
Paint your face on with a smile, say to them don’t worry
Carry on just for a while, you get lost and hurry
Can you see it now?
That nothing’s as it seems somehow

When you don’t know how much is enough
When we’ll get in the way
And you can only bear your soul
When you think that this is your day
But when it’s not and you get shot
You wish for someone else’s luck
But you can’t do nothing
So you must be doing something
Don’t you know what it’s like
To disappear from someone else’s life so you can

Paint your face on with a smile, say to them don’t worry
Carry on just for a while, you’ll get lost and hurry
Can you see it now?
That nothing’s as it seems somehow

(https://genius.com/Gordi-nothings-as-it-seems-lyrics)

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.