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Posts Tagged ‘body’

My dear friend and frequent collaborator Katie Johnson has recently started a new video series which profiles the artists she works with frequently.  I was honored to be featured in the first of her videos!  She put a great piece together which includes an interview with me and lots of behind-the-scenes peeks into how we work.

Take a look!

I often think of lines from the song the princess sings in Peter S. Beagle’s legendary work The Last Unicorn:

Oh, I am a king’s daughter
And I grow old within
The prison of my person
The shackles of my skin

And I would run away
And beg from door to door
Just to see your shadow
Just once and nevermore

The prison of my person, the shackles of my skin” perfectly describes how I feel about my physical body most days.  Though I doubt Mr. Beagle had ME in mind when he wrote it, it resonates so strongly with me.  And I’m sure people with other chronic illnesses will be able to identify with it; it’s a pretty universal problem across the chronically ill spectrum.

Feeling so trapped has always made me instantly know something of what Amalthea felt at finding herself in human form.  I imagine it was even harder for her though.  The disharmony we chronically ill feel with our body was something I’d wanted to express in my Enchanted Sleep series for quite a while and I was glad to finally bring the image to life!

There’s something more visceral about images than you often can’t replicate with words.  Words are powerful, they can build and tear down mountains, but the visual world offers the same information in a different form.  One that, if used well, can strike like a snake and bring instantaneous understanding.  That’s my hope with this series; to illustrate the life of a person with myalgic encephalomyelitis in a way that reaches where words cannot.

I will admit… I’d beg from door to door just to catch a glimpse of a unicorn’s shadow too 🙂

Here’s a look at the final image from our shoot:

Inside Looking Out

Inside Looking Out

And a detail shot:

Inside Looking Out - detail

Inside Looking Out – detail

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During the five years of being chronically ill to the point of having to change my life to revolve around my illness, I have tried to keep my spirits up.  I’ll readily admit I’m naturally more of an Eeyore, but I also know that having a positive outlook can have a huge impact on one’s quality of life.  So I try to train my brain to be on the lookout for silver linings; for the beautiful amidst the ugly.

Of course, I can’t speak for everyone with ME, everyone with fibro, or everyone with other chronic illnesses.  These are just the shiniest of the silver linings that I have discovered personally.  Yes, there is a lot of bad along with this good, but that’s a subject for another time.  For now, I want to highlight the positives.

 

1. You Become More In Tune With Your Body

I, for example, have learned that I am quite sensitive to nearly all medications, even more than my small frame would account for.  There is a certain cold feeling I get in my stomach which is the warning for a bout of coldsweats and vomiting coming.  While I used to drink lots of caffeine and couldn’t get through an afternoon without some kind of energy dose, I now drink black tea in the morning, and rarely anything beyond that.  My body felt noticeably cleaner and fresher after I made the switch, and again when I became vegetarian.  You learn to listen harder to the signals your body gives you and take them more seriously.

Vanity's Murder

Vanity’s Murder

 

2. You Learn Who The True Friends In Your Life Are

After the fifth time in a row of my having to reschedule an outing due to the unpredictable whims of my body, most people would stop trying to make the outing happen.  I have been extremely fortunate to have wonderful people in my life who are as understanding about my forced flakiness as anyone who doesn’t have a chronic illness could be.   They know by now that evening events, large crowds and physical exertion are especially hard for me, but they continue to invite me to dinners and parties, always letting me know that it’s ok if I’m not up to it.  I love them for continuing to invite me, even when I have to say no 90% of the time, but even more for not holding it against me.

To The Lost

To The Lost

 

3. You Come To Terms With Your Mortality

Everybody dies.  That is an unavoidable fact.  I’ve found that I, along with many of my chronically ill peers, have given our lifespans much greater thought than our healthy counterparts.  Whether our disease is something known to shorten your lifespan or whether it’s a roll of the dice, we are generally able to come to peace with the knowledge we won’t be around forever much earlier in our lives than is typical.  This can even lead to what I call The Walter White Effect, which essentially says that when you have faced the fact that your life may not be as long as you had once believed, you are motivated into working much harder in the present.  It’s true, any of us could go at any time in an untold number of ways.  But there seems to be a quieter acceptance of this inevitable fate when you’ve had your body occupied with chronic illness for a long time.

All Hail The Queen

All Hail The Queen

 

4. You Life Distills Into The Most Important Components

I have days when there are only a couple hours (often scattered through the whole day) when I can actually get anything done.  Usually I’m able to get a little bit more done than that, and it helps that much of what I do can be done laying in bed with my laptop, but if you only had three or four hours to accomplish anything, what would you use that time for?  Lunch with friends?  Taking care of your pets?  Showering?  Taking photos?  Making love?  While chronic illness robs you of so much time, it also forces you to look long and hard at each of the things you do choose to engage in.  I won’t, for example, spend time editing photos which I’m less than satisfied with.  Which activities you choose to keep can say a lot about what’s truly important to you.

Beloved Of The Crown

Beloved Of The Crown

 

5. You Look At The Big Questions

Can you believe in a god who would allow you to live your life so sick with no cure?  Would that strengthen your faith or wipe any trace of it from your life?  What kind of legacy will you leave behind?  If you’re too sick to work and thus always short on cash, how do you define success in your life when society places so much emphasis on status, power and wealth?  If you, like most of the chronically ill, had to scrap your original plans for what you wanted to be when you grew up, how will you find meaning in the life you’re given?  What is the meaning of life when that life is often confined to a single room?

In Between Awake And Asleep

In Between Awake And Asleep

 

This is, of course, an extremely subjective round-up, based mainly on my own experiences.  What will my distilled, concentrated life look like?  What causes will I champion and where will my energy reserves go?  Where will yours?  Chronic illness tends to create mini philosophers, whether we will have it or not.  And while I will never have all the answers, the questions are still worth pondering.

 

Fae Light - Dedeker looks like she's pondering Big Questions.

Fae Light – Dedeker looks like she’s pondering Big Questions.

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