Dreamwalking

Hello from the Underworld.

Let's talk about mobility and perception.  If you know me personally, you probably know I've had difficulty walking for quite some time now.  I have synovitis in my right leg due to Lupus and it has lost both strength and flexibility that I cannot seem to regain.  My right knee is very stiff and fills up with fluid (it's been drained numerous times by both orthopedists and my rheumatologist).  Some days, it can hardly bend at all.  I've been through a long stretch of PT that seemed to help temporarily, only to be followed by yet another flare up, despite a decrease in overall systemic inflammation. It's a drag.

So I finally got a walking cane, as pictured above with the lovely silver scrollwork design, because GLAMOUR, baby.

Does it help?  Most definitely.  It takes the weight and pressure off my janky leg and helps me walk with less pain.

Do I use it often?  Eh.... I feel too self-conscious to take it to work.  I use it to get around when I go out sometimes, especially if I will be doing a fair amount of walking.  It helps me get around the house on a bad pain day, too.  But work, where I probably need it the most?  So awkward.  I don't want to be perceived as too "impaired" for my job, for which I already have restrictions.  So I limp and wobble around and suffer, which I know is dumb.

I've been on my feet (on and off) for six days in a row, five of them work days and I'm in a significant amount of pain.  My body can't manage the levels of activity I'm trying to squeeeeeeeeze out of it.

I'm trying to talk myself into taking it to work if I need it.  My cane even folds up and fits in a carry bag. But I know I'm going to get a shitstorm of unwanted interactions and questions and I just don't want to deal with the excessive interest I'm likely to get from co-workers, many of whom already comment almost daily on my gait or how I look, etc... Or what's worse, the looks of pity, which are totally gross.  I mean sure, it sucks...but don't look at me like I make you sad.  UGH.

Ultimately, I need to do what's best for me and my health.  Still, I just don't want to deal with the perception of being sick, being damaged.  But my body isn't giving me much of a choice sometimes.  It's getting incredibly hard to walk and with each active day it gets just a bit harder.

Listography:

Currently seeking: the mindset to do what needs to be done and take the damn walking cane to work with me.

Currently watching: Person of Interest (obsessed!) and Banshee (intrigued.)

Currently reading: The Magicians Land by Lev Grossman

Current culinary obsession: more often than not I drink milkshakes for dinner because Gastroparesis sucks.

Bodies / Public

I have always been interested in the perception of our bodies as public spaces, vulnerable to the gaze of others, where people construct a narrative that objectifies.  Other people are forever trying to tell us who we are based on how we appear to them. We may have been raised to be polite, not to pry into private lives, but we are forever evaluating and commenting upon the bodies of others: their gender, weight, general appearance. No permission needed.  This is especially true for women, but we do it to everyone.

There is nothing quite like the struggle with illness or chronic pain to make this visible.

Coworkers, relatives, even strangers feel comfortable commenting upon my body.

It's been a little less than two years since I developed some visible mobility problems, specifically, an awkward gait with a somewhat pronounced limp due to recurring problems with rheumatic disease. I've had people I barely know ask:

"What's wrong with you, anyway?"
"What's wrong with your leg?"
"Do you have XYZ condition?"
"Are you always going to be like this?"
"Are you EVER going to get better?"

Even more disconcerting are comments on whether or not you "look" sick.  I've had coworkers tell me things like "You looked so unhealthy a few months ago, but look much better now."  The intent is to be kind, but it seems so presumptive, this feeling that one is free to comment on how you look without being asked.

Much has been written about invisible illness, about feeling as though your experience is being dismissed because "you look so good."

But there is so much you don't see behind closed doors:
the days spent in pajamas because I am in too much pain to get dressed,
the overflowing shelves of prescription medications,
the ice packs and heating pads and long, painful physical therapy sessions.

I could go on and on, but you get the idea.

I have to live my life. I take painkillers.  I wear makeup and style my hair and go out anyway, at least sometimes.  Inevitably even those closest to me, like my my mother or mother-in-law, will then greet me with "Well, you certainly don't LOOK sick."

Hey, I didn't ask.

It gets old.

It's interesting to me because much of what I write deals the external narratives thrust upon us, our bodies. Sick bodies, female bodies are especially vulnerable. We aren't granted the agency to write our own stories.  Our bodies are public spaces filled with the graffiti of external perceptions. It feels like vandalism, a violation. This is definitely a theme in CYBORGIA, as well as in more recent work.

This is the value of writing, in whatever form you choose: a poem, a novel, a blog entry.  It's the opportunity to write your own story, to retrieve the power to construct the narrative being written on your body.

Writing and the Investment of Time and Energy

When you have a limited amount of energy to spend (as I do) you must choose carefully which tasks to prioritize.

I have been thinking about this quite a bit lately, as I have not spent much time and energy on writing, at least not as much as I would like.  Instead, it has been primarily work and sleep, with any extra strength spent on domestic tasks, such as laundry, food prep, and paying bills.

I have written a few poems throughout this long period of chronic illness, but not with the productivity of just a few years ago.  I miss the days spent this way: a hot cup of chai, a pile of books, notebook, laptop.  The process of completing a bigger project--such a a full manuscript--is really satisfying: the research, writing, assembly, editing, submitting.

It's been a while.

That's okay.

Returning to doing what you love can be a gradual thing, a slow awakening.  It starts with the smallest of projects: a single poem, a single journal submission.

Today I have two poems in a lovely online journal: Masque & Spectacle.

I also have three poems up at one of my favorite online journals: Arsenic Lobster.

I am setting aside a bit of time, not every day--but a couple of days a week--as designated time for writing and submitting work.  If I am unwell that day, I will reschedule, just as I might for any other appointment.  I am making creative time a necessary aspect of self-care.  Larger projects can wait.  It's okay if I don't have a book manuscript.  It's the regular participation in the act that matters.  With time, I believe the bigger projects will emerge.

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