Dance Diaries: Body Smiles & The Art of Spastic Meditation

I was back on the dance floor last night after a two week hiatus.  The first week was because of a class cancellation and the second was because of my recent bout of exhaustion.  After about two weeks of inactivity, I forced myself to start the process of re-aligning myself with my body.  It was time to get out of the fetal position and kick up the dust I’ve been accumulating nestled on my couch.

In my post, A History of Movement, I talked about the difficulties in managing my on and off again relationship with physical activity.  Once again, I found myself derailed by overwhelming fatigue and loss of appetite.  I couldn’t rationalize going to the gym to burn off the small amount of calories I was able to digest that day.  With my appetite recently returned, my body is crying out for order, for balance, for the sweat to start flowing on a regular basis.  I feel weighed down by the layers of tiredness I’ve carried around with me for the last two weeks.  I hit the gym tomorrow, but tonight I’ve put on my favourite dance tunes for some spastic, improvised dancing in my apartment.

Not only am I weighed down by the crusty remnants of ongoing fatigue, I feel like it’s been forever since my body has expressed “joy.”  That sounds pretty nutty, but I think it’s important to let your body “smile,” to let it go crazy and impulsive once in a while – hence, the spastic apartment dancing.  At dance class, I’ll admit that I am spastic there, too, but I’m also trying to follow someone’s instructions.  Sometimes, it’s important to move without thinking.  So, I guess you could say this is my version of meditation tonight, to close my blinds and clear my mind with the random flailing of my arms and legs.

We all need more joy in our lives and in our bodies… so, why not create some for ourselves?

A History of Movement

“Movement is life. It is how we were meant to function.  The ways we heal, the ways we process are all tied into movement.”

I stumbled upon this quote the other night on the website of a local yoga studio.  In this particular context and during times of arthritic pain, I would have murmured, “well, that’s easy for a pretzel bending yogi to say.” Healing through movement makes sense, of course.  We all know that moving our bodies (exercise, playing, sex, dancing, etc.) can have extremely positive effects in healing and maintaining health in the body (and the mind).  But, how do you get this healing power when it hurts to move?  How do you convince yourself after an exhausting day of managing and hiding your pain in public that it’s actually better for you to keep moving rather than collapse on the couch?  As someone who has probably spent half of the last decade on that couch, I’d say it’s pretty near impossible.

About five years ago, I tried yoga.  Remarkably, I felt my pain reduce during sessions.  It was extremely challenging, but in the moment, it focused me on something other than the pain and how shitty it/I felt.  I registered for a 9-week session, but afterwards, I was sidelined by a new lupus symptom (costochodritis) and before I knew it, I was in the hospital.  During my recovery, I signed up for yoga again, this time at a different studio that offered “restorative yoga,” a slower paced yoga that consists of relaxing and longer held poses (mostly lying down).  I loved it.  At the time, there was lingering inflammation in my chest which was preventing me from sleeping on my back, but at restorative yoga, I was able to lie down for the entire hour!  After several months of doing that class, I pushed myself to move into the more active styles of yoga.  Then, three years ago, when I had fully recovered and was independent and living on my own again, I watched my 60 year old father cross the finish line of his very first half-marathon (in front of my brother-in-law, who is half his age!).  And in that moment, as I was cheering and nearly crying with awe in the bleachers, my dad inspired me to start running.  I took a “Learn to Run” session with the Running Room.  The entire experience was extremely motivating (my instructor was a cancer survivor) and exhilarating – I couldn’t believe that I was running with the same body that could hardly walk two steps without wincing from pain!  For the first time in my life, I could actually feel my leg and back muscles getting stronger.  My “Learn to Run” session ended in correspondence with the 5K CIBC Run for the Cure.  I registered, aiming to finish in 45 minutes, but I surpassed my goal, crossing the finish line at 36 minutes.  I was also doing yoga at the same time and I was feeling the best I had ever felt in my life.  In the months that followed, my health steadily declined.  The costochondritis came back as well as a level of arthritic pain I hadn’t felt since my initial diagnosis in 2001.  I stopped running.  I stopped yoga.  The pain was so great that “movement,” other than what was absolutely necessary, was out of the question. Once again, I soon found myself in the hospital with Lupus Cerebritis on more drugs than I’d ever been on.  Recovery was rough, but I walked almost everyday with my parents and gently started running again.  More recently (and in mild weather), I have continued to walk (to work, to get groceries, etc.), but I would run only now and then. My body was soft and toxic from all the medications, but I was determined to take advantage of being pain-free.  Along with my dance class, I also have a gym pass, which I hope will renew my love for running and will motivate me into being active during the cold Winter months.  I’ve bought a yoga pass for use at a later date, but have, for the last week and a half, started every morning with five “sun salutations.”  I’ve set a goal to increase the amount of salutations with time and commit to starting every morning with something active versus checking my emails.

I guess you could say that’s my “history of movement.”  I know it will always be an on and off relationship with exercise when you have a chronic illness.  Something will always threaten to derail you from keeping active or eating healthy or even caring about any of those things at all.  I’m lucky that my family, friends, and co-workers are all health conscious, supportive, and inspirational individuals who motivate me to take care of myself.  The toughest part is starting and being gentle with yourself, of understanding that even a little is an accomplishment.

And although the quote says that movement is “how we were meant to function,” for the chronically ill, the freedom of movement is not so much a given, but a rarity and a gift.  Upon arrival at the gym earlier tonight, I started a gentle jog around the track with the intention of allowing my body to go as long as it felt it could.  To my surprise, I ended up jogging in relative comfort for 11 laps in a row (about 25 minutes straight).  There’s no greater gift than that.

Running Time

In the early hours of the morning, I watched the digital clock on my cell phone shift the entire time space continuum.

Okay, not really, but I was touched by how little effort it took to lose an entire hour of my life.  Our electronic devices remember to do it for us – turn it back, “spring it forward” – manipulating our concept of time with one mindless, automated click.  We even talk on the phone with people in different time zones, sharing a joke with someone “now,” who is technically laughing with you tomorrow morning.  It’s all a little bit fucked up.

Almost three months ago, I wrote a blog post announcing my desire and commitment to moving forward… with my runners on.  During the last 11 weeks, I’ve been going to the gym 2 – 3 times a week, with the exception of one week when I felt exceptionally shitty and only went once.  My Prednisone marshmallow suit is resisting complete annihilation, but my leg muscles are now nice enough to let me run ten minutes straight before slowing down for a rest.  I am hardly hard core, people –  I run only at the pace at which my pissy, little body will allow me.  I listen carefully to every tinge of pain; a tender ankle, an achy knee.  I navigate my way out of a dizzy haze with rest and pep-talks.  I don’t run every time I go to the gym, I space it out, trying not to overwhelm my joints despite their mostly pain-free status.  I know better than to let that fool me.  I’m running, but I’m taking it slow.  Go figure.

This is the longest period of time I have ever been committed to the gym and although Prednisone’s amazing marshmallowy effects can still get me down, I know that my efforts at the gym have nothing to do with it’s continuing presence.  “Moon Face and Friends” will only disappear with those lovely, little white pills.  I will have to wait till my April appointment in order to see if the Big M is a worthy opponent for the auto-immune wolf growling inside of me.  If so, Evil P can get the hell outta here and the outer normalcy I wish for will finally come to be.

Perhaps it’s silly to think that when I look like the person I was, I’ll be able to be the person I am?  Am I waiting for an imaginary “me,” the way people run after time; sweat pouring, chest heaving, trying to catch up. Could it be that this slightly marshmallowy version of myself isn’t a lesser version at all?

“Enjoy it while it lasts!” One of my keepers exclaimed.  Be satisfied now.  Redefine “normal.”  Shine your moonlight puff-tasticness all over the whole damn place.

Just run with it, baby.   Just run.

These Boots Are Made For…

I was zipping up my boots today and as I carefully pressed back the fuzz of my wooly socks, I had a thought that froze me in mid-zip: “It’s nice that my brain is letting me zip up my boots.”

Recently, I had the opportunity to speak with someone who is living with Multiple Sclerosis.  Her brain doesn’t let her leg do very much of anything, which is why she walks with a cane.  She is courageous and beautiful as she waits out the progression of her disease.  “This wasn’t the deal.  We had a deal,” she said, in reference to her body.  She continued to converse with the other people sitting ’round the table and I let a few moments pass until I spoke up, speaking more to myself, I think, than to her:  “I don’t think there was a deal.”  She paused and looked at me from across the table.  “No, you’re right.  That’s the thing… there never was one.”  The truth is, our bodies don’t owe us anything.  Our brains don’t have to do what we tell it to.  There is no agreement.

I think of her and I “pray” for her.  I say “pray” in the sense of trying to send good thoughts and hope and love out there, so that somehow, somewhere that person could feel some part of it.  I recently had tea with a religious friend who smiled at me and said, “There is always someone praying for you, not just your friends and family or people who know you, but people far away, people who have never met you in their entire lives… they are thinking of you and praying for you too.”  An image immediately surfaced in my mind:  A man’s dark silhouette perched atop some distant mountain peak in the Himalayas, his eyes are closed and he is thinking of me, putting aside a bit of hope for a stranger across the sea.   I turned my back on organized religion long ago, but my spiritual soul could not help but smile at the thought.  I believe her.

Oh, and I have been informed that yes, I have indeed put my Raynaud’s affected hands in someone else’s armpits in order to benefit from the area’s exceptional resource of body heat.  I forgot.  Memory disfunction is very  common with Lupus.  Thankfully, my keepers are quick to provide the missing pieces.  And don’t worry, I don’t put them in just anyone’s armpits.  At least a decade of rapport seems to be required.

My brain let me run today too.  Gym visit #3.  And when I say “let me run,” I would have to say “barely.”

I am assuming your brain let you zip up your boots today (assuming you have boots) and so I ask you:

Isn’t that nice?