Message in a Bottle

I write this blog for a number of reasons. Primarily, it is my catharsis to release nearly every CRPS-related thing that is happening in my life. It is a record of everything CRPS is teaching me, a record of how CRPS is changing me.

I blog using my “journal” voice, the voice I use in my handwriting, writing that fills little blank books, bound and kept closed tightly with elastic, writing that may never to be seen again. Self-indulgent streams of consciousness that don’t pander to any particular audience (despite the fact that I never want you to forget that I am always talking directly to you). Loosely formulated, brutal honesty complete with unabashed f-bombs and shit droppings. Incomplete sentences, with incorrect punctuation. And, it is barely bearable for me to use the tidy Alegreya Sans typeface to express a voice that I normally see conveyed in sort of legible chicken scratch, peppered with crossings outs, crowded margins, dyslexic inaccuracies, and ink blotches that indicate a blinking cursor in my brain.

So why do I do it? Why type out all of this nonsense, pasting .gifs, .pngs, and .jpgs instead of clippings, receipts, and plane tickets onto the pages? Why not just fill another black, green, or red 3.5″ x 5.5″ moleskine?


Because (pathetically, shamefully) I’m really fucking lonely. CRPS is an island of brutal isolation.

I used to use social media, primarily Facebook, to keep in touch with the outside world. In the past year, as you may have noticed, Facebook has become an acrid cesspool of self-righteous political chest thumping. And the braggarts with their exotic foods and journeys around the world (I used to be one of them, so I make this point out of jealousy and embarrassment. Jealous of trips I am no longer able to take, embarrassed to once have been inconsiderately flamboyant with my social media posts). And then there are those who prefer to use the platform as a weapon to inflict emotional pain. Every day, I felt more angry, jealous, sad, and more disconnected from a world that used to be mine. I realized that I have very little in common anymore with my family and friends. The isolation grew greater through being constantly connected. I don’t need extraneous reasons to feel angry, jealous, sad, and disconnected; CRP(fucking)S is enough. In February, I logged out of Facebook.

“The initial mystery that attends any journey is: how did the traveler reach his starting point in the first place?” ~Louise Bogen, Journey Around My Room

And so, this blog has become my message in a bottle. And, wouldn’t you know it? It seems I’m not alone in being alone.

Message in a Bottle
Just a castaway
An island lost at sea
Another lonely day
With no one here but me
More loneliness
Than any man could bear
Rescue me before I fall into despair
I’ll send an SOS to the world
I’ll send an SOS to the world
I hope that someone gets my
Message in a bottle
A year has passed since I wrote my note
But I should have known this right from the start
Only hope can keep me together
Love can mend your life
But love can break your heart
I’ll send an SOS to the world
I’ll send an SOS to the world
I hope that someone gets my
Message in a bottle
Walked out this morning
Don’t believe what I saw
A hundred billion bottles
Washed up on the shore
Seems I’m not alone at being alone
A hundred billion casatways
Looking for a home
I’ll send an SOS to the world
I’ll send an SOS to the world
I hope that someone gets my
Message in a bottle
Sending out an SOS

I’m Here

It’s the middle of the night. I’ve already been asleep. Awake and aware that I need to rest, I scrolled through my Facebook feed to lull me into my next cat nap.

Long ago, I abandoned Facebook friends who engage in political online debates or post to provoke or evoke negative emotions. Most of my “friends” are dancers, actors, singers, and generally people who believe there is more to life than forceful expression of political opinions. My Facebook feed is benign, happy, friendly, and supportive.

Let’s be clear. Today (er, yesterday) was a hard day. Again. I swam for 47 minutes. I lied in a chair by the pool for 1 hour 15 minutes waiting for my leg to stop shaking so I could strap it back into its boot and go home.

What a luxury! To be able to lay myself poolside for over an hour, with no responsibilities…  It doesn’t sound so bad, right?

But, you see, the thing is that the spasms hurt. They are violent. People notice. It is humiliating. I was hungry. I just wanted to go home and make a grilled cheese sandwich.

For me, the luxury would be having the freedom to leave the pool when I was finished swimming. The luxury would be to be able to plan my day and execute that plan.

A handful of people watched me cry. Some came over to talk to me and distract me (they all know me by now, this leg has become my identity). I was thankful, but frustrated. I needed the attention, but I didn’t want it. I don’t enjoy talking about my leg, much less pretending that it (shaking, purple, painful) doesn’t exist.

In addition to the usual pain, tonight, my leg was very sore from the morning’s spasms. I dutifully took my pills, went to sleep, and was jolted awake. Cue Facebook feed.

One of my friends posted a video of Cynthia Erivo’s stage performance of I’m Here from The Color Purple. It hit home. I cried again. This time the tears came with renewed hope. I know I have to get up in the morning and keep trying.

“…I got my house,
It still keeps the cold out
I got my chair
When my body can’t hold out

Got my hands doin’ good like they supposed to
Showing my heart to the folks that I’m close to
I got my eyes though they don’t see as far now
They see more ’bout how things really are now

I’m gonna take a deep breath
I’m gonna hold my head up
I’m gonna put my shoulders back
And look you straight in the eye…

I believe I have inside of me
Everything that I need to live a bountiful life
With all the love alive in me
I’ll stand as tall as the tallest tree

And I’m thankful for every day that I’m given
Both the easy and the hard ones I’m livin’
But most of all
I’m thankful for,
Lovin’ who I really am
I’m beautiful
Yes I’m beautiful
And I’m here”