Tuesday, July 26, 2011

Living On The Edge

This post is the immediate outcome of an intense and passionate conversation with Mia Mingus; it also has roots in conversations with Scott Rains and Riva Lehrer.

Mia and I met one sunny day in San Francisco.  For coffee, supposedly.  Well, we had our coffee, but our plans were altered as Mia ended up bailing me out of car trouble.  The feeling of risk that came from my car running, literally, out of power and from me pushing it farther than I knew it could go softened into a conversation about edges and living on them.  We agreed that we would both post today, Tuesday, at 10 AM.  Her response to our conversation can be found here.

Mia's words and our interaction came at an important moment for me.  For the past months, I've been thrown off an edge -- pitched from my regular dance life into a space of enforced rest, fear, pain, rehab and, finally, some recovery.  I've felt that edge keenly.  At lunch the other day, I was explaining to a friend that I had had this powerful conversation and that I was thinking about these edges and how they can shape your life.  A second and very different conversation ensued.  Emotionally, I'm not sure how to describe what these conversations meant to me.  I feel supported and challenged; these are difficult issues.  It's gonna be a long-ish post.  Hope you can hang in until the very end.

A big part of disabled life is management (link goes to a post of mine about overcoming.  Or not).  You have to figure out emotionally and personally how to live with your disability and how to live your life with your disability -- that's more of an external thing.  Theoretically, over time, you figure out how much you can do; what you can do; and when you can do it.  The thing is, though, that I don't seem to be able to live consistently within my limits.  That's no big shakes -- I know few people who do.  What's important to me is *why.*  And, for me, why has to do with what I tell myself.  With what I believe I should do.  And with my fear about what it would mean to live, well, like that.  Whatever *that* might be.

But let me deal with the easy part first.  Sometimes, I don't know where the edge is until I fall right off it.  I'm talking here about the physical edge and the moment when I realize that in fact I was misreading my body signals or that I didn't know it would hurt/cause a problem/injure me until I had done it.  How do you know when too much is too much?  I encounter this moment often in dance.  Sometimes, I feel my body stretching into a position or place.  It feels good.  I feel safe and strong.  Months later, when something is hurting/wrong/inflamed, I will learn that the feeling that I thought was growth and expansion was in fact a warning signal.  Sometimes, you just don't know that you are hurting yourself.  Sometimes, the very things that you are doing to build strength and to support yourself are the things that hurt.  Yes, I've managed to hurt myself in training -- quite badly, too.  Sometimes, the edge creeps up on you before you even know it's there.  Sometimes, the body is confusing.

More insidious, though, is what I tell myself about these experiences and my commitments.  Why do I over plan?  Overcommit?  If I'm honest with you -- and I'm trying to be -- it's not because I can't say no.  It's because I can't *let* myself say no.  I can't let myself.  Take my self care routine and the way I use assistive technology.  I could do things differently, really, but some of it is that I don't want to be seen that way.  I don't want to be associated with whatever societal judgment I think comes with using a particular technology or with needing to take a break, accept assistance, not do this project.  I load myself up with .... well, I'm not quite sure what.  But I do know that I can't let myself be seen like that.

Here are some examples.  It was very difficult for me to start to use my wheelchair; I could (indeed, can) still execute the movements we call walking.  Why would I want to be defined by the ultimate symbol of disability?  Of powerlessness?  Of vulnerability?  Of .... It felt like giving up or giving in.  I knew what people would say; I knew what I felt.   I'd much rather limp, struggle, deal with pain, decreased mobility, ever shrinking distance, minimal life outside the house, an inability to come and go independently, to stay the course of whatever activity.

I didn't know then about the grey area so many of us live in.  I saw it as an all or nothing situation, and I did not want to be seen like *that.*  I've been in similar conversations with long term manual wheelchair users.  Yes, their shoulders are trashed.  No, they cannot go as far as they could in their earlier years.  Yes, there is pain, fear, ....  but use a powerchair?  It's not an all or nothing situation.  I and they know that.  But how we feel, how we think about these complex moments of transition is one of the contradictions of the disability community.  We have friends who use that equipment; we don't see any difficulty with them using that equipment.  It's just not us.

It gets a little more complicated.  Throughout this blog, I keep writing about how my chair is liberating, how much pleasure I get from using it, how much freedom it offers me.  This is all a fundamental part of my daily life.  But when I hit the dance studio, what I experience in daily life rolls over into art, beauty, power, grace.  I feel limitless; I don't even notice the risks.  I feel invulnerable.  Now, I know that's not true.  I'm always writing about falling; I've had several serious injuries.  But the air in the studio seems different to me.  The limitless of the movement that I can create with my colleagues sucks me in.  It doesn't seem like I am flying hard and/or unreasonably fast; it seems natural.  It feels right.  I don't feel like I'm transcending my limits; I feel like I am growing into my body.  My self.  My place.

In some ways then, this is all a kind of misplaced way of understanding and creating self worth.  One of the challenges of this post is to break that down.  So, here's how it goes.  I am scared of the changes in my body and the changes that might happen to my body.  I'd rather not dwell on that.  Instead, I work to counteract my feelings by developing a sense of self worth that is tied to what I can do and what I have done.  My pride is here; my pride is strong; my pride challenges my fear .... until I fall off the edge.  I then have to reassess and renegotiate.

It's not just me, of course.  I am part of a disability community.  I see/experience a contradiction in my circles.  We talk amongst ourselves about valuing self care, but we don't often practice it.  Without the practice, there are few models.  Without the models, community understanding and discourse are more rare.  In such scarcity, it is easier to force oneself to keep going -- because you don't want to let the community down and you don't want to let yourself down.  And on it goes.

As you've probably guessed by now, I am a rules girl.  I expect things to be, well, like a ruler.  I expect the edges to be flat, orderly, smooth.  I expect the edges to be the things against which you can draw clean straight lines.  I expect.  My language here is important.  Throughout this post, I keep talking about edges as something you fall off.  As imperceptible things that divide you from your ideal sense of self and ideal life.  An edge is risky.  Cutting, indeed.  Sharp like a razor.  Painful, sometimes.  As the post goes on, I am keenly aware that I am not talking about boundaries.  Thresholds.  Dividing lines.  Those somehow seem more neutral; I'm not even talking about being edgy.  That would be hip or perhaps even cool.

No, I am talking about edges, because edges for me associate with free fall.  That's the moment when you lose control over your body, your self (because somehow they are distinct), your life.  Living on the edge, the title of this post, communicates the riskiness, the very unsafeness of life.  My beautiful, joyful life.


  1. "I could do things differently, really, but some of it is that I don't want to be seen that way."

    That rang loud and clear for me!!

    Having read this particular blog I'm beginning to realise just how alike we are! When 'rules' I had established about my life (or rather the way I understood it) get bent or fuzzy it really throws me for a loop.

    It would seem we are dealing with - and blogging about - similar feelings, albeit with different triggers just now.

    If you want to email me any time and have a chat you're more than welcome x

  2. Investing yourself in your body is such a tenacious thing, isn't it?

    I am an autistic person and also a musician who is in the process of "getting it together." It's a strange thing- as someone who plays a brass instrument, I know that someday I won't be able to keep playing. That's how brass instruments work, eventually your body gives out and you can't keep doing it... or else something kills you before that can happen. And yet I'm choosing to totally invest myself in this, to center my entire life around it. Knowing all this, why would I do that?

    I've managed to avoid mixing up my self esteem in it, though. Mostly because I was just so bad. I've managed to change my teachers and circumstances and made a lot of progress this past year, so I would say I'm "OK" now, still not good. Maybe in a few years I will be good enough that I could mix up my self esteem in it. But I've seen and heard too many musicians doing that and I know that it's a dead end. It's negative reinforcement- if I can do this thing then I must be worthwhile, I must be OK. That works as a secondary motivation, but if your main motivation in life is avoiding bad things, both bad situations and your own insecurities, then it'll catch up to you eventually, sometimes in a pretty big way.

    Edges, huh? I live there, teetering. I have for the last few years. I honestly have no idea how much longer I can keep it up, but until I fail I don't feel like I have any other choice.

    I'm glad I've taken the step to read your blog more regularly. I hope you don't mind me commenting.

  3. This post resonates with me on all sorts of levels. (Scott pointed me at it.) That edge sure is a slippery little sucker, isn't it? It keeps squiggling around, doubling back on itself, and jumping in random directions when I least expect it.

    And no, I don't want to be seen like "that."

    But sometimes it's that I don't feel like I "deserve" the assistance, because other people have it much worse than I do.

    Interesting how humans' minds work.