Snow, Wind And Deer

First post of 2014!

How was everyone holiday and new year’s celebration?  Geoff and I had the chance to take a little road trip to see some family, which was really fun!  We got to hit some stops coming and going we’d been wanting to see for a while, so I’ll just get right into it.

First stop was the Arizona Deer Farm!  I visited the deer farm with my family when I was about 4 or 5, and I remember it quite vividly.  I was very excited to realize that not only was the place still around, it was pretty much right on our way!  It’s more of a large petting zoo than a farm per say, and they encourage photographs to be taken.  I have a series coming up which is taking a lot of inspiration from deer, so it was very much a win-win situation for me!  Thanks to Geoff for taking all the photos that have me in them!

There’s a path for people to walk on, and most of the deer mill about freely inside a large enclosure.   They have plenty of places they can go and hang out or take a nap that are well off the path, so they only are interacting with you if they want to.  And since you get a big cup of feed when you go in, many of them want to 🙂

Most of the deer are fallow deer; as you can see, they don’t get terribly large, they come in a variety of beautiful colors, and they retain their fawn-like spots into adulthood.

The price of food: one smooch on the head. This one thought it was a fair trade.

Checking my hair for edibility; sorry, buck.

Sadly, my coat is also not edible.

The males have the most stunning antlers of any deer I’ve seen!  I took lots of photos of this handsome gentleman.

Once we arrived safely in Kansas, we settled in to the cold weather.  They had an unusual amount of snow for this time of year, which was sighed at by all the locals but I rejoiced in.  We met up with Erick Riedell, a friend of Geoff’s since Junior High, who also got ordained and married us, and who is also a photographer.  In addition to being an all-around great guy, he’s a cancer survivor twice over now.  He had volunteered to be a part of DreamWorld while we were back, and I wanted to find a way to honor his battle and triumphs… hopefully I’ll be able to share the result of that shoot soon!

While we were wandering around a snow-covered wood for the shoot, I was enchanted by the fairy-world sparkle the snow gave all the plants.  I snapped this shot, which reminded me of the fairy tale of The 12 Dancing Princesses and the underground world where all the trees and fruit are made of jewels.

Little Jewels

On our way back home we stopped at the Wigwam Motel, the epitome of Route 66 kitsch.  We’d stayed there once before, and while the rooms are humble, they are so fun to stay in!  It looks like very little has changed since it opened in 1950.

A cellphone snap of our wigwam.  Those are my gloves on the car trunk, not a wad of used tissues as it appears.

As we made our way home from Arizona, we stopped at The Roadkill Cafe, another historic Route 66 stop.  They had great food (which was not at all made out of roadkill) along with a lovely hand-drawn sign honoring the fallen Hotshot firemen.  I had an unsettling moment when I saw the sign; my heart sank at the reminder of all the brave souls who were lost that day, but I loved that the cafe was honoring their lives and memories.  Regular readers will remember why the loss was hard for me.

Thank you, Roadkill Cafe, for your very sincere and personal gesture showing your gratitude to the firemen heroes.

So now… on to the first photo of the year!  As much as possible, I feel it’s important to start a year off right with my photos.  Get going on a direction that will determine a positive trajectory.  I wanted my first photo of 2014 to be one I’d look back on proudly.  This photo ended up being quite a bit more work to edit than I’d expected, but I felt waiting a little longer would be worth it.

This concept was actually one I’d shot with Katie at our very first shoot many months ago, but it just didn’t turn out quite like I’d wanted.  The concept was a DreamWorld character; a wind spirit, or perhaps wind goddess would be more appropriate.

I started by making her an art nouveau-inspired headdress.  I remember I’d been looking at one of my books on Alphonse Mucha and had wanted to make a headdress similar to what many of his women are adorned with.

I used my foam head to pin and hot glue sensual, looping ribbons into a headband shape.  The forehead and sides were decorated with masses of little white flowers and small glitter-covered styrofoam balls in a variety of sizes.

It was meant to be worn rather low over the forehead, which almost instantly gave it that art nouveau feel.

After that, I hot glued long strands of ribbon to the headband and dotted them with a few more of the styrofoam balls which would help show the blowing wind, along with making it feel more magical.

The second shoot went much better than the first one did!

Where Earth Meets The Sky

Where Earth Meets The Sky – detail

Katie always plays ethereal goddess-types so easily!  Her acting chops are so important to the kind of photography I do.  We both would like to see this kind of headdress become fashionable so we could just go around wearing them all day, at, say, the grocery store… so how about it?  Would you like a wind goddess headdress of your own to help start a trend?  🙂

Thanks to Katie for her patient modeling and to all my readers!  I hope your year has been off to a great start!

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2013: High/Low

It’s that time of year when everyone with a blog is required to take a look at the previous year and take stock.  I like this tradition.  It gives you a sense of accomplishment for the things you’ve done and also brings to mind what still needs attention.

So what happened in 2013?  So much!

I signed a contract with Conlan Press, Peter S. Beagle’s publisher.  This has already brought some very exciting things about, and there are many, many more to come!

In The Lilac Wood

I created what I consider the first “real” DreamWorld piece.  By “real” I mean a full-fledged character was brought to life with costumes and props which took months to create and inventing new ways to bring about my vision on a shoe-string budget.  The inclusion of birds would also prove to be a frequently occurring theme in DreamWorld.

The Court Of The Dryad Queen

I got to photograph Lauren Cohen, aka Maggie from AMC’s The Walking Dead.  The image also kicked off a sub-series of DreamWorld portraying the various steps along the Hero’s Journey.

Crossing The First Threshold

I also got to photograph Paul Telfer, known for his roles in NCIS, The Vampire Diaries and other roles that require buff-and-handsome men.  He perfectly portrayed the angelic kind of being you would want watching over you while you sleep.

Prayer For The Frail

This year also brought about a new, ongoing collaboration and friendship with actor/model Katie Johnson.  I could write an entire post about how wonderful it’s been to have Katie in my life, both for artistic reasons and personal ones.  I will leave it at two main points; that she is a spectacular model, equally skilled at following specific, minute directions as well as being let loose while I just try and keep up with her.  Her friendship, strength and grace have been a great boon this year, especially during some notable rough patches.  Thank you, Katie 🙂

Perennial Parasol

One of those notable rough patches was learning about the tragic deaths of the 19 Hotshot firemen in Yarnell, Arizona this summer, and that one of them had been a childhood friend of mine.

To The Lost

In a somewhat similar vein, I took my passion for animal rights to a new level after watching the documentary Blackfish.  This also meant that I finally tackled underwater photography, which I’d been quite nervous about trying.

Concrete Cell

I wrote an open letter to Jack Hanna criticizing his continued support of SeaWorld after the Blackfish allegations, which became quite successful and even garnered the attention of celebrities such as British actor Stephen Fry.

Stephen Fry Tweet

Like DreamWorld, the set of Blackfish photos has set in motion a more all-encompassing series addressing animal rights in other areas.  More of that will come in 2014!

A Drop Of Blood

In championing human causes, I got to be a part of the Kickstarter campaign for the documentary Canary In A Coal Mine, in production, about myalgic encephalomyelitis, aka ME, previously known in the United States as Chronic Fatigue Syndrome/CFS.  The Kickstarter was an INCREDIBLE success, and we can look forward to seeing the film in late 2014 or early 2015!  I’m proud to have been a small part of the movement.  I also got to work a little more on my series on living with ME with the help of model/friend Aly Darling.

Martyrs To A Name

I visited a sheep farm to take photos of lambs and goats along with friends Katie and Brooke Shaden, to create a very personal portrait of my grandmother.  This particular lamb was appropriately named Too Cute 🙂

The Shepherdess

I had the pleasure of being interviewed on The Candid Frame, The Altadena Blog, and having some of my photos appear in the self-portrait how-to book, Shooting Yourself, by Haje Jan Kamps.

I “celebrated” my 5-year anniversary with ME.  I’ve tried many new therapies this year to combat the ME, but with the exception of ART massage, it has gotten slowly worse and finally forced me to quit my day job.  In some ways this is a good thing, as my day job was doing my body no good at all, and it also means now I can concentrate fulltime on art.  But it’s also a bit frightening; will the ME get a little worse every year?  Will it level off now that I’m not pushing it trying to hold down a job?  There are many unknowns, which can be worse than knowing something bad will happen.  I try and keep a good attitude about things, but it’s also no good trying to simply ignore your fears.  They won’t go away, they’ll simply grow in the dark.

Vanity’s Murder

This TED Talk sums up my fears, hopes and trials beautifully, and I would recommend it to anyone and everyone, especially any who struggle with depression.

I am still mourning Richard Harrow’s death (this was my light-hearted way of dealing with it) and I’m working on a photo to help work through those feelings.

On a happier note, I got to save a litter of opossum babies and was deeply moved by a beautiful new book.

But perhaps very best of all was getting to photograph author Peter S. Beagle, of The Last Unicorn fame, and bring him into DreamWorld as its King.  It was such a tremendous amount of work, but that just makes the resulting photos that much more meaningful.

Beloved Of The Crown

A year ago, I never would have thought I’d find myself not only merely talking to Peter, but actually interacting with him, making a costume for him, and casting him as one of the most important characters of DreamWorld.

Aerie

If that all happened in 2013, what will 2014 bring?  I am very excited to find out!

Here’s to a great new year!

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5 Years of ME and Me

Yesterday, the 27h of May, marked my five-year anniversary with ME… which leads me to talking about why I call it ME verses the multitude of other names given to it, in addition to introducing my latest photo on the subject which you can WIN a print of!  Make sure you read all the way to the end to find out how to enter 🙂

A detail shot from my new photo

I’ve been wanting to address this for some time and it just keeps getting pushed down to the bottom of my blog to-do list.  But my anniversary seemed like a good time to bring it up.   In the United States, we call ME by a whole host of other names; Chronic Fatigue Syndrome (CFS), fibromyalgia (fibro), chronic fatigue immune dysfunction syndrome (CFIDS), post-viral fatigue syndrome (PVFS), Chronic Epstein-Barr virus (CEBV), and most insultingly, the “yuppie flu.”  Luckily we seem to have mostly left the “yuppie flu” label behind us, but many of the other names are not much better.  Calling it Chronic Fatigue Syndrome has been likened to calling tuberculosis “Chronic Coughing Syndrome,” or stomach cancer “Chronic Upset Tummy.”  The names are not indicative of what’s really happening in our bodies.  They are trivializing and patronizing.

I like myalgic encephalomyelitis (ME), which is what most of the rest of the world calls it.  It literally means “inflammation of the brain and spinal cord with muscle pain.”  This at least hints more accurately at what may be going on.  Muscle pain is one of the defining characteristics of reaching that diagnosis (as I can personally attest to; I woke up nearly weeping from muscle pain after a strenuous shoot yesterday) and the evidence is suggesting more and more that this is ultimately a neurological condition.  ME at least doesn’t carry the negative connotations of the other names; people are generally under the assumption that they are not “real” diseases.

In Between Awake And Asleep

I should be perfectly clear that there is still a tremendous amount of controversy over what name to give us, and if they really are all more or less the same disease.  I genuinely believe they are the same disease from everything I’ve seen and read, but there will be many who do not agree with me.  However, since the entire reason the US broke off from the rest of the world’s name in the 1980’s was to create an insurance loophole so companies could deny coverage to patients… I am reluctant to believe what anyone on that side of the table claims.

So I call it ME, though since it is a lesser-known name here in the US, I’ll often consent to referring to it as ME/CFS.  Meeting the names halfway, so to speak.

As I said, yesterday was my five-year anniversary with ME, although the signs were certainly starting to form years before that.  I was unnaturally tired all the time, I got sick and injured easily and seemed to have a little more trouble healing.  But since I barely knew ME existed, and I was young, in my late teens and early twenties, I figured it would pass.  You think horses, not zebras; you don’t automatically jump to the conclusion that you have a strange, little-known disease.

A Fading Girl

Some of you have heard the story of how I became acutely sick with ME before, so I will try and just hit the high points.  Five years ago Geoff and I went out to lunch.  We’d been dating for exactly a month.  After lunch, I felt tired so I laid down and took a nap.  When I woke up, my stomach was very upset and I thought I had food poisoning.  Though it wasn’t pleasant, I figured it would pass quickly.  Several days later I still felt nauseous, so I saw a doctor who was very unconcerned about me and suggested I take some Pepto Bismol.  How helpful.  Over the next several days the pain in my stomach gradually changed from an all-encompassing gripping, nauseous pain to an extremely sharp and localized pain in my right flank.  Appendicitis? I wondered.  The pain was higher than would be classic, but it was so sharp, extreme and had come on so suddenly, I worried nonetheless.

After 10 days of pain and nausea, I finally saw a good doctor.  They determined pretty quickly that it wasn’t my appendix, ordered an ultrasound and a LOT of bloodwork (the only reason I didn’t faint was because I was sitting down, but I felt bad enough to wish I’d fainted.)  Everything came back normal.  They thought it must be a kidney infection, so I took the antibiotics, glad that we had figured out what was wrong and that I’d be over it soon.  But the treatment didn’t do anything; I still felt terrible.

That same story repeated and repeated over the next few years.  For a long time it was thought that my crazy flank pain and my fatigue were two separate problems; at this point, I believe the evidence indicates they both stem from the same cause.  I have undergone more tests and procedures than I care to remember, I have tried every food and supplement imaginable; every Western and alternative approach.  Occasionally I find something that helps even fractionally, and I cling to it like a drowning girl.

When I think back on this time, I feel like what was happening in my body is best expressed by this scene from Akira, near the end of the movie.

Tetsuo’s grim end.

My body seemed to completely fall apart and spiral out of control, with me stuck in the middle of i.  Up until then, I had been quite consistent with doing Pilates and yoga, and enjoyed their effects on my body.  I ate pretty well, I didn’t smoke, drink or do any drugs.  I felt like I was doing things right.  But when ME finally hit, none of that mattered any more.  My body became a disgusting, horrible prison with a mind of its own, seemingly bent against me in every way.  And the fact that almost none of this showed outwardly made it even worse.  One of the things I hear from other ME people as being the most frustrating thing is having people say to them, “You don’t look sick.”  It’s true, often we don’t (until you get into the very dire, extreme cases of ME) but inwardly, that movie clip is what I felt was happening to me.

Thankfully, the flank pain has been reigned in somewhat over the years through arduous nerve-blocking injections, although it never truly goes away.  And we still have absolutely no idea what’s actually causing the pain in the first place.  But since it used to feel like I had a shard of glass trapped inside my abdomen, I’m very grateful for every bit of pain chipped away from it.  The fatigue and muscle/tendon/anything-but-my-flank pains have all gotten steadily worse over the past five years.

The Fog Rolls In

My life has become smaller and quieter each year in response to the unreasonable demands of my body, only to have it ask for even more.  To a degree, it’s generally agreed that staying as active as possible is best; that “if you don’t use it, you lose it.”  This is tempered with one of the few things known with absolute certainty about ME: if you continually push yourself past what you can handle, you WILL get worse.  And it can get much, much worse than what I experience.

The UK documentary Voices From The Shadows paints an uncomfortably vivid picture of how bad ME can really get.  It shows people completely bed-bound, in constant, wracking pain, despite morphine drips, eyes continually covered as they are unable to endure even sunlight filtered through curtains.  Ears always protected with earplugs because they are so sensitive to sound.  From my end of things, going to the grocery store is only barely tolerable.  All the light and noise, oh the cacophony of noise… people talking, carts wheeling, plastic crinkling, children crying, music playing, announcements made… I genuinely dread the necessary trip each week.  And if I feel that way about it when my case of ME is one of the mildest diagnosable forms, I can hardly imagine the miserable existence the poor souls with severe ME endure.

Unjust

I don’t want to have to know what severe ME feels like first-hand.  So I keep trying treatments and supplements.  I modify my bedtime, my sleep habits and try to rest as much as possible, without giving up any of the physical ability I still have.  I try to do gentle yoga and do more walking, which I can also use as time to scout locations.  My family and friends all know that any plans made are subject to the whims of my body and I may have to cancel at the last minute.  Very, very thankfully, they have all been extremely understanding and supportive.  It’s a hard enough battle to fight your body every day; I am sorry for those who also have to fight with their loved ones too.

People not understanding is at the core of our problems.  The medical community that doesn’t understand what our disease is or how to help us.  The public, who have been led to believe our disease is not valid.  And we ourselves who are trapped in these confusing, maddening bodies that seem to be actively working against us.

Breakable

Luckily, I do believe the tide is finally starting to turn.  More and more noise is being made about ME, and we are starting to get even a little bit of recognition and validation.  More research is being dedicated to finding out what’s really going on in our bodies.  I try to maintain a balance between being open to changes coming and breakthroughs being made without actually hoping for them.  The disappointment is too great when they don’t pan out.

Through it all, the highs and lows, the dinners I can attend and the ones I have to stay home from, the times I weep from pain and frustration and the days I walk easily through meadows, I have my art.  I’m sure you’ve all heard me talk about my Enchanted Sleep series, photos from which are scattered through this post, and how I use my photos to portray what living with ME is like.  Art has helped me keep my sanity through these last five years.  It’s something I can do, not just in a metaphoric sense and raising awareness, but it’s physically something I can do.  Walking through the woods scouting locations is good for me, body and soul.  I can still edit even when I need to lay down (which is frequent) since I work on a laptop.  Sometimes muscle or tendon pain in my right arm or wrist will force me to stop for a few days or weeks, and those are always agitating times.  I want to be creating.  That is where my soul finds meaning and pleasure.

Spoon Theory

It’s been a rough five years.  But it’s also brought some incomparable joys to my life; my discovery of photography, for example.  And most importantly, Geoff.  Geoff who stuck by me when I became very ill after we’d only known each other for two months, and been dating one month.  Lesser men would have run.  He has supported and loved me every step on this tricky road, and is always there in the dark moments when I want to give up.  He gently pulls me up and sets my feet going again.  I am so incredibly grateful for him.

To be honest, I have been depressed with this anniversary looming ahead of me.  I have heard that if you don’t go into remission within the first five years, you’re never going to.  And while intellectually I realize that’s a pretty ridiculous, sweeping statement to make (how could anyone possibly know that when we don’t even know what it is we have?) it’s made this date feel even gloomier.  I am choosing to not believe that I will automatically never go into remission, simply because it hasn’t happened yet… but it’s also ok for me to feel sad.  It’s ok for me to mourn the things I have lost.  It’s ok for me to have bad days when I just cry and burrow under the covers all day.  It’s ok to be human and have emotions.

Mourning For Things Lost

I work hard at my art, not only because it’s so deeply satisfying, but because it’s something I hope to make a career out of.  Means of employment get fewer and fewer for me every year, but I can do art.  It’s a way for me to earn money and contribute to my family’s income, things very important to my sense of identity.

I think this is going to be a good year for my art.  Not only with my recent good news, but other things are starting to happen too.  I think this is going to work.  But please feel free to support my work and pick up some blank greeting cards, limited edition prints or sign up for my online self-discovery-through-photography course.  🙂

Each journey through ME is different.  This is just my story.  I can only hope that by telling it, it adds another drop to the sea of change coming and will bring us a tiny bit closer to recognition and a cure.

Longing For Better Days

I’ll just say a few words about my latest Enchanted Sleep photo, Vanity’s Murder.   My hair has always been quite fine and refused to grow any longer than my shoulders.  No matter what I did, how often I did or didn’t cut it, nothing changed that.  While it’s always annoyed me, since I would love to grow it romantically long, it was a fact of my life that it never would.  A few months ago, I thought my hair seemed a little shorter, but I dismissed the thought.  It kept nagging at the back of my mind though, even though I hadn’t gotten it cut in months.  Finally, I looked at a photo of me from about six months ago and I was shocked by the proof of how much shorter my hair was; nearly down to chin-length.

I went in to my doctor, since hair thinning and loss is a possible side effect of almost every medication I take, but he suspected it was a response to stress, not medication.  I finally made an appointment to see my fantastic hair guy (Hurley, at The Hair Pyrates).  He agreed that the loss was probably stress-related too, but importantly mentioned that the hair I’m seeing now first started growing four to five years ago… and I think we can all agree that I started undergoing a great deal of new stress five years ago.

After everything ME has taken from my life, all the things it’s made me give up, my hair just felt like the absolute last straw.  I had no idea how much of my feminine identity was tied into my hair until its existence felt threatened.

The good thing about stress-induced hair loss is that it’s usually pretty reversible, at least in theory.   At Hurley and my doctor’s suggestions, I started taking a hair, skin and nails supplement and I was startled by how quickly I saw a difference.  It still has a ways to go, but I’m so grateful that it is coming back.  Worrying about my hair may seem like a very superficial, frivolous thing, but it wasn’t to me.  It was about having one more thing taken away from me, it was about losing control over another big factor of how I appear to the world, and the things that contribute to my identity.  There is so much about ME that is outside of my control.  I am very thankful that this time, I could fight back, and actually win a little.  Let’s hope this is a sign of things to come.

Vanity’s Murder

Vanity’s Murder – detail

Vanity’s Murder – detail

Vanity’s Murder – detail

Vanity’s Murder – detail

Lastly, let me tell you about how you can win a signed and numbered limited-edition print of Vanity’s Murder!  The very kind people heading up the ME and You fundraiser were very receptive when I wrote them and offered to donate a print to their cause if it would help them.  And while I’m sure they have more than enough on their plates, they quickly came up with a way to do this!  Want a chance to win the print?  Follow the directions below!

• Click on the ME and You button below and donate whatever amount you can through the big yellow “Donate” button on their site.
• Leave a comment on this post saying that you donated and mention that you’re entering to win Vanity’s Murder, as several artists are doing similar giveaways.  Make sure that the name you leave in your comment matches your Paypal name!
• Leave a message for the ME and You people during your Paypal  checkout, again stating that you’re entering to win Vanity’s Murder.
• A winner will be randomly selected on June 6th and I will announce the winner here!

That’s it!   This is such a win-win situation; the cause is so worthy and someone will get a beautiful print as well.  🙂  For anyone who missed it, the amazing people at ME and You are trying to raise funds to do further testing of a new drug that has shown real promise in helping to cure ME.  This is something we absolutely must study more, and hopefully, within a few years it will be approved and people all over the world will be able to try it.  And just maybe, some of them will go into total remission like some of the people who it’s been tested on.

Remission.  I can hardly imagine what that would feel like.  But I would love to find out.  If you can, please consider donating to this great cause.  And thank you very much!

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