Sometimes: There is no do, only try

I thought I could manage today. Despite getting up and trying every day, some days are simply unmanageable.

I woke up in pain, as usual. But something about this morning’s pain was different. Sharper, more present in some way. I got ready to go to the pool out of habit. My lower leg felt like a cinderblock that was being chipped at by a pick axe.

It’s OK, I thought. It will loosen up once I get in the water and start moving.

I have a system for getting in the water. If I have a lane to myself, I go to the deep end. I put my left foot in the water, then my right. I circle my ankles away from each other, then toward. I make gentle bicycling movements with my right leg. I hold onto the block handles and ease my body into the water. Facing the wall, I put my feet up, hold on, and stretch my lower back and hamstrings. I turn and stretch my shoulders. While stretching my shoulders, I revisit the bicycling motions with my leg. And then I start to swim.

So, like all mornings, I followed my routine this morning. But, my ankle and outer lower leg, instead of dissipating into the familiar dull widespread ache that I can clench my teeth through, started to burn and ache more pointedly (for lack of a better word). I still thought it would work itself out.

I pushed off the wall with my left leg, as always. I started to swim. Something was definitely not working properly in my leg. My lower leg had no buoyancy and just sort of noodled around beneath me. By the first 25 yards, a hot poker was lodging itself under my medial malleolus and the giant hand was tearing at my fibula. With every attempt at a kick, the pain became sharper, hotter, more specific. One hundred yards in, I had a needle driving itself into my calf. I tried to circle my right ankle several times at the end of each length of the pool.

A swim just wasn’t going to happen today. I had to stop after five minutes. I swam 250 yards before easing myself out of the pool. I hobbled over to the nearest deck chair and sat there for 45 minutes with my leg elevated in the air, touching nothing.

I eased my foot into it’s brace, hobbled to the car, went home, and remained in bed ( with nothing- except for the thousands of imaginary bees- touching my leg) for the rest of the day.

Yoda would be proud not.


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.

Screen Shot 2017-09-27 at 1.21.49 AM

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:



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.



Screen Shot 2017-09-27 at 1.22.17 AM

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.

Saber-toothed Tiger

There is a pain management desensitization technique where I am supposed to identify pain triggers and apply some sort of positive connection to those triggers. A clever story, aromatherapy, music, you know woo-woo kinds of stuff to use as foreplay for the mindfuck that is CRPS.

I do it (I’ll do anything to try to ease this condition), and it actually does help to relax my mind just a little bit.

So, right. We have been without electricity since Sunday evening because of hurricane Irma. The stress, the heat, the stench of rotten food penetrating the door to the garage (can’t put it outside because bears. because Florida…), the fact that the only available food comes from the only place with electricity: McDonalds. It has taken a severe toll and I am in a full-fledged flare.

But wait, there’s more. The factor that is making this horrific staycation absolutely unbearably miserable is that the neighbors have a generator.

Good for them. They can shut their windows and have AC and refrigerated food.

The blasted thing has been blasting 24/7 since the neighborhood lost power. My bedroom window faces the generator’s location, about 200 feet away. But the sound… It carries. It never stops. It sounds like a giant fired up his giant-sized 30 year old push lawnmower.

The nerves in my leg are now resonating at the same unrelenting, deafening frequency as the noise coming from this goddamned generator.

How the fuck am I supposed to find something positive here? All of my scented candles (conveniently doubling as a light source) are already ablaze. My noise canceling headphones, play soft and sweet music.

But holy fiery hellballs! The flesh of my leg feels like it is being torn apart by a large, possibly prehistoric predator.

Then, the necessary imagery came to me. I am now imagining the sound of the generator is the sound of a saber-toothed tiger purring as it shreds and devours my lower right leg.

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.


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.

Screen Shot 2017-09-25 at 7.20.39 PM

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.


On Focus

A random person tries to stop me in the hallway of the YMCA to discus ulcerative colitis, how necessary it is to lose weight in order to “keep it all inside.” A guy I dated once (literally once) approaches me to chat about all the fun things he and his new girlfriend are up to. A former lover materializes from the ether with the purpose of talking about himself, telling me how great he is doing. The fair-weather friends who sporadically pop into my life to tell me how *amazing* I look. Every emotion evoking thing on social media. Whatever nonsense the President is twitting about.

It is all meaningless chatter, trying to pull my focus, testing my mental strength.

I have to drown it out. I can’t pay attention. I have to protect myself. I must stay focused. 

I hate to say it, it sounds so harsh, but I’m going to say it: feeling anything about anything that doesn’t directly pertain to my goals is a waste of my energy.

A previous iteration of myself would have had *feelings* about these distractions. I would have been concerned about a stranger’s ulcerative colitis. I would have been jealous of the new girlfriend. I would have felt insecure and insignificant about someone else’s success. I would have indulged the platitudes. I would have gotten sucked into social media. I would have engaged in debates.

And the change was unprofound and happened without conscious thought. I think I simply realized one day that I don’t actually care. These people and things are peripheral to my life and don’t have any impact whatsoever on me or my goals.

These things do not affect me. These things can not affect me. I must stay focused.