Things You Cannot Live With

Remember my awful, fear-inducing trip to the nephrologist’s last week?  It really shook me, hearing that the one thing that is giving me any sort of quality of life back may indeed fuck me over royally in the future.  That was very frightening, and it made me feel like I had nowhere to turn, and no good choice of actions.  It was not a good place to be.

I joined an online support group for people with chronic pain and asked some of them if they’d ever heard of this mysterious scarring the nephrologist referred to, since I had not.  And, keeping in mind that these people are not doctors and just other patients like me, the news was hopeful.  None of them had ever heard of it or received that warning when they underwent the treatment.  I began to hope that the nephrologist was wrong, or possibly confusing my treatment with another one.

Then I got the best message from another woman on the support group.  She reminded me that it’s not ok for me to live my life huddled in a corner, weeping from pain.  That’s no way to live.  And it’s also not ok to live in fear… fear of what the future may bring, what side effects the treatments will cause, etc.  She told me to do my research, find the best option, then go with it and don’t doubt myself.  Living with the fear of the future hanging over my head is no way to live, and living in pain isn’t either.  She encouraged me to not let them rule my life, to take charge and be in control.

It was so exactly what I needed to hear.  The encouragement from a stranger is sometimes the best thing for us.  So I’ve made up my mind; I’m not going to live in pain, or fear.   This means I need to switch doctors and look into finding ones who really actually care about me and my health, who will work to help me find treatments and get better, and not simply try and get me out of their offices as quickly as possible.  I have found a new doctor, who is near my new apartment and who gets rave reviews.  It’s a rather long process of switching over and making her my new primary care physician, but I’m starting it.  I’m tired of being the only one who cares if my treatments are working or not.  I’m tired of being swept under the rug, because the doctors are embarrassed that they have no idea what to do with me.  I’m done with that.  I’m going to find a team of doctors who will actually help me.

It will be a few weeks or months before I can even see this new doctor, but I’m hopeful about her.  And if she is not what I need, I will keep looking.  I will find people who can help me.

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In other news, my grandmother passed away Tuesday night.  She had been declining in health since April, and it was an incredibly slow and long, suffering-filled process for her.  I’m glad she’s finally at peace, not suffering, and reunited with my grandfather, who passed away a few years before her.  She was never happy without him; they belonged together.  And now they’re together again… it’s a good thing for them both.

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Geoff posted up some of the photos he took in the Jim Morrison Room.  You should check them out!

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And I finally got my Halloween self portrait finished and uploaded.  It was fun to shoot, and no, that pumpkin is not Photoshopped; it really is on my head.  It was very humid inside and a bit hard to breathe or hear anything.  And the I was covered with pumpkin goo afterward, but it was all fun and worth it.  Geoff helped me and was my human tripod again, which made the whole process a lot easier than it would have been otherwise.  Thanks, honey!

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Break On Through

I had the chance through my fiance, Geoff, who is also a photographer, to shoot in the Jim Morrison room at the Alta Cienega motel in Los Angeles.   He apparently lived there for a number of years, and the room had become something of a mecca for The Doors fans, who all add something to the graffitied walls and ceiling.

The motel itself looks pretty questionable, were it not for it’s historic significance.  I felt sure I would get bedbugs from sitting on the bed, and possibly even just walking on the carpet, and I wanted to go home and shower as soon as I stepped foot inside.  But, oh, the things I will do for art, so I pressed on.

Some detail shots of the graffiti in the room:

This one makes me sad 😦

Geoff wanted a photo of this one (although it’s not like I didn’t):

Geoff apparently wrote this one when he was there the night before with his model 🙂

And this is the one we contributed to the room:

I shot a few self-portraits, with Geoff acting as my human tripod:

Yes, this really is on the ceiling of the room 🙂

My tribute to Jim’s famous photo:

Playing with the claustrophobic feeling of the room:

And this last one I can’t truly call a self portrait, because what sells it is Geoff’s camera work, which I did not direct him to do.  But I think it’s safe to call a happy collaboration 🙂

All in all, it was a really fun shoot in a crazy room with strange history.  Then Geoff and I got brunch at Bob’s Big Boy, so it was a pretty darn good morning.  And then I showered.  Oh, how hard  I showered.

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Beastly Brides

I did a short series recently using the fairy tale archetype of the Beastly Bride; the bride who secretly turns into some kind of animal or possesses magical powers granted from that animal.

There are are a number of different versions of this tale.  The most common is about the Swan Maiden.  In the standard version, the swan maiden lives in a magical land, far away, and flies to ours from time to time to bath in our waters.  Why she would want to do this is never explained.  But, when she arrives and decides it’s time for her earth-bath, she takes off her swan gown, transforming into a beautiful, nubile, naked young thing and goes skinny dipping in a river or lake.

Invariably,  some peeping tom of a hunstman happens by, realizes what’s happened and grabs the swan gown.  Without her gown, the swan maiden can’t transform back into a swan and fly back to her own land, so she is stranded here.  The huntsman then, with her gown held hostage, forces her to marry him and usually bear him several children.  In all the versions, the husband hides the gown somewhere, and while the swan maiden pretends to be a perfect wife and captive, she is ever on the lookout for it.

One day she finds it, often in the presence of the children she bore under the rape of her husband, and without a second’s hesitation, she slips the gown on and flies back to her own magical land, heedless of her childrens’ cries.

There are as many reactions to the tale as there are versions of it.  Some people condemn the swan maiden for abandoning her children…. I am far more inclined to be sympathetic to the poor creature held in a foreign land against her will, routinely raped until she produced numerous children, and that her escape was understandable.  But, some will disagree.  Certainly it’s not the childrens’ fault the their father was such an awful person.

In some versions, the husband then realizes what a jerk he was and goes on a quest to prove his love and worthiness to possess such a magical creature for a wife.  In what I can only attribute to Stockholm syndrome, sometimes the wife approves of his accomplishments and goes back with him.  Sometimes he fails and meets his death along the way.  Often the wife refuses to follow him back, and he returns to our world with the knowledge that he is an awful person.

Above all though, the Beastly Bride is not to be trifled with.  You may contain her for a time, but never forever.  You cannot own her.  She is more powerful, magical and crafty than her husband and care should be taken by him.  In a mutual, joyous union from both parties, the couple can be unstoppable.   But force her and hold her against her will, and you will suffer for it.

I cannot help but love the Beastly Brides 🙂

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Nephrology Woes

I didn’t know what a nephrologist was until 2008 when I first sent to see one.  They are doctors who specialize in kidneys.  In early 2008, I became suddenly quite ill, and the illness lingered and lingered mysteriously.  After seeing numerous doctors and specialists, it was eventually discovered that I have a rare kidney malformation called Medulary Sponge Kidney.  What that means is my kidneys are in the process of growing tons and tons of tiny, almost microscopic cysts inside them, which are too numerous and small to remove (not to mention they would just come back).

An illustration might help.  Here is a normal kidney:

Here are mine:

The little cysts interfere somewhat with how well my kidneys filter, but more than that, they hurt. A lot.  On bad days it feels like I’m storing shards of broken glass in my abdomen.

The other thing about it is though that while it does impede the filtering function a bit, it’s nothing especially alarming to the nephrologists.  They are far more concerned with their patients who are on dialysis or dying of kidney failure.  They don’t seem terribly interested in doing anything for me, because their focus is on helping those with seriously impaired kidney function.  I might get there in a few decades, but as of now they just want me to send in frequent blood and urine samples and leave them alone.  And, oh, that pesky, unbearable pain?  Too bad.  Not what they deal with.

In late of 2008 I was finally sent to a pain specialist, who tinkered around with various combination of drugs for me to try, most of which left me chained to the toilet in nausea.  Eventually we found a combo which worked fairly well to dull the pain without making me barf every meal I ever ate… but even on this set of meds, I am completely house-bound whenever I’m on it.  I cannot be at work, I cannot drive, I cannot be a passenger in a car or I will get unbearably ill again.  I have to be at home with no plans of leaving for at least 6 hours.  It’s not at all a fair trade, but it’s better than nothing.

Eventually I began getting a series of nerve-blocking injections from my pain specialist.  He puts me under for a short time, then injects the individual nerves who are throwing the pain-fits with a steroid and a numbing agent.  I’ve had this done three times and it’s brought back a lot of quality of life which I had been losing.  It’s an ugly procedure which leaves me feeling like my ribs are all broken for 2-3 days and having weird steroid side-effects for the next month, but it’s better than the alternative.

So today I was set to see the nephrologist again, which I was not looking forward to.  Each time I go in, they find some new way to frighten me, tell me there’s nothing they can do to help me, and that I’m completely alone and fucked.  I already know that.  I don’t want to be reminded of that every six months, just as I’m starting to get my courage back after the last visit.  But my pain had been on the rise again recently, which I thought meant that the injections were starting to wear off and would need to be repeated… in which case seeing him would lead to a referral to the pain specialist again.

I expected that the nephrologist would be in favor of the injections, because having them cuts down greatly on how much pain medication I need to take… and the nephrologists are always scolding me and telling me that the long-term effects of taking lots of pain medication will wreak havoc on my kidneys.  But the nephrologist today threw me a curve ball.  He happily upped my dose of meds to combat the extra pain, and discouraged me from having more injections… because, apparently, repeated injections can lead to scarring around the offending nerves.  And scarring around the nerves can mean that, over time, no amount of pain medication would ever reach them, and no injections would ever help them.

Fuck.

Fuck, fuck, fuck.  If I take loads of pain meds, I’m living as a house-bound recluse, missing out on all sorts of parts of life, except for work, which I have no choice but to go to and simply suffer whatever pain I feel when I’m there.  And with every pill I take, I am causing more damage to my future kidneys.  If I have more injections, I have one awful month dealing with the side effects of it, but eventually start to feel much better and am not nearly so isolated… but apparently, that’s just a ticking bomb for future pain of unimaginable proportions.

It’s a rock and a hard place, isn’t it?  I have no idea what to do about this.  I felt numb with frustration, anger and fear on my way home.   I’ve put a call into my primary care doctor to get her opinion on this, but I feel so stuck, like any move I make will only cause me further harm.

Life is often not fair, I know.  I am not a unique case of this.  I am just at such a loss of what to do, and so full of frustration about it, a venting was necessary.

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Blue And Denial

Call an optimist,

She’s turning blue

Such a lovely color for you.

So begins the A Perfect Circle song Blue; a piece of lyric which has confused and mystified many fans.  Go to any fan site and you’ll see countless variations on the meaning of the words, including what the words actually are.  I did my research and dug around until I actually found Maynard James Keenan, the writer of the lyrics, speak about them in rare plainness.

It’s about denial.  It’s about seeing someone in trouble, someone who can’t swim (neither can the singer, as it turns out) who has begun to drown.  As the person in trouble begins to turn blue, instead of realizing that their death is near, the singer compliments the beautiful hue.  It’s a wonderful vivid picture of deep, deep denial.

I have wanted to do a photo based on the song for years.  I pitched my concept to countless photographers, who always turned it down.  Photographers always turned my ideas down.  While it frustrated me at the time, I’m glad for it now.  If that frustration and lack of self expression hadn’t built up in me as it did, I wouldn’t have had a reason to turn to self portraits as an outlet.  It took a while, even once I decided that I would do it as a self portrait, for me to figure out exactly what it would like like, how it would be blocked out, the set, etc.  And then one day, as often happens for me, when I was thinking about something else entirely, it all flashed into my head.  The best way for me to solve a problem is to not think about it.  My brain does much better work when I’m not breathing down it’s neck.

So, here we are:

At first I was terribly intimidated by getting all the angles right; of the camera, of me-on-thebed, of me-in-front-of-the-mirror, without cutting off the me-on-the-bed, etc.  But, it ended up being pretty simple actually.  Just took a little tinkering.   I shot the me-on-the-bed first, then slathered myself with blue eye shadow and drenched my hair for the me-in-front-of-the-mirror.  Oh my, it took an awful lot of blue eye shadow.  And I still had to enhance it post production.  I was sneezing blue powder for a week.  I am quite pleased with the drips of water on the vanity surface… and yes, Geoff, I was standing on a towel, so none of it got on the floor 🙂

Tomorrow I’m off for a shoot I’m very excited about with my favorite female model.  Wish me luck!

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The Power Of Myth

I use myth, symbolism and metaphor heavily in my art.  It’s just the way I’ve always been, the natural way for me to express myself visually.  When I drew or painted, the same style and language was evident, and now it has translated itself into photographs.

While everyone is allowed to have their own thoughts and feelings on art, I’m going to make the statement that myth matters.  Myth is important.   Myth retells us the stories of our lives, but in dramatic and tangible ways.  When you read a story about the young hero off on his quest, it’s easy to see the tests and trials he encounters, and what he needs to do to overcome them.  You fully believe he will succeed even against overwhelming odds.  In our own lives things become muddy.  The trials and tests are never as clear for us as our hero, and the solutions rarely so evident.  And that is when myth steps in, crosses the divider from fiction to reality and helps us.

Myths actually help us in the real world.   When I am overwhelmed and feel I cannot possibly go on, I think of Aerin in The Hero And The Crown, sent to face a dragon she cannot possibly slay herself.    When I am tired, I think of the Fellowship, walking day after day, after day, after day, to get the Ring to Mordor.  When I am hurt and am certain my wounds will leave me damanged forever, I remember the healing Lissar went through in Deerskin.

Myth matters.

Myth helps us carry on.  By looking into other worlds, we are able to see our own much more clearly.  We are able to overcome, because we saw the heroes overcome.  We believe in ourselves because we believed in them.  We can create miracles in our lives after seeing our heroes create them.

Mythology may seem like a very antiquated idea these days.  Something charming the ancients used, but which we today have evolved beyond.  I would say there’s no time we need myth more.  The capacity for good and bad has rarely been as dramatic as it is in our current times.

Myth would insert itself into my work whether I wanted it to be there or not.  It is part of me, part of how I see the world.  But I am glad it is there.  I embrace it fully and celebrate it’s existence.

And thank you, mom, for buying me a book on Greek mythology on a whim when I was 14 and opening me up to this glorious world.  I would be a lesser person without it.

Bound; feeling trapped by your past.

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