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I have known Erick Reidell for several years, but he and Geoff go way back to high school.  Erick has always been an adventurous, creative, gregarious person, and we found a lot of artistic common ground to talk about when I first met him as Geoff’s new girlfriend a little over five years ago.  Which was a relief to me, since I just wanted Geoff’s friends to like me!

It was a shock to everyone when he was diagnosed with cancer that same year.  Cancer cruelly seems to always pick on the best, most wonderful people.  Erick would not be anyone’s “typical” cancer patient.  He doesn’t smoke, lives healthfully and is always full of optimism and cheer.  That first year Geoff and I were dating, Erick had a seven-pound tumor removed from his abdomen.  There were many breathless months while Erick endured chemo and treatments and recovered from surgery.  I vividly remember the night Erick’s wife called Geoff to tell him that the most recent scan had come back clear, and for the time being at least, Erick was in remission.  Everyone was, of course, extremely relieved.

Since then I’ve gotten the chance to get to know Erick better myself, and I can say he is one hell of a guy.  Hard-working, artistic, funny, a great husband and dad and always ready to face the next challenge his body throws at him.  He is such a lovely man that I suggested he become ordained online so Geoff and I could have him marry us at our wedding, which he did.  The wedding was, of course, a wonderful, beautiful blur of a day, but it will always mean so much more looking back and remembering it was our dear friend, and not some stranger, who performed the ceremony.

Alex/my man of honor, me, Erick, Geoff and Geoff's dad/best man, Larry.

Alex/my man of honor, me, Erick, Geoff and Geoff’s dad/best man, Larry.

Late winter, after several years of being clear, Erick’s cancer once again returned, and once again, he beat it.  Not without great effort from him and his doctors, but he did it.  When we knew we’d be seeing each other over Christmas, Erick asked to be a part of DreamWorld, which I gladly said yes to.  I also felt that a very serious charge had been given to me.  I wanted to make sure I did something special for Erick, something true to DreamWorld, something that spoke of his struggles and also something that would ring true to other cancer sufferers.

Out of these swirling thoughts came the Yellow Knight.  Yellow, since that color is associated with cancer-awareness ribbons, LiveStrong bracelets and the like.  His armor is made out of little bits and swirls of ribbon (or paper, as it ended up, but it looks like ribbon) much like the awareness ribbons.  Though ribbon would seem like a frail and flimsy defense, he defeats the horrible cancer-monster.

I’ll talk briefly about how I made Erick’s costume on, again, a next-to-nothing budget.  His cloak was the same one I’d used in Paul Telfer’s Sleeper’s Sentinel photos, so that was already made.  I wanted to make a chestplate and bracers for Erick’s armor.  Ihough I’d originally planned to use actual ribbon, I was dissatisfied with the ribbon selection both in my ribbon drawer and the craft store, so I decided to use paper instead.  That was also quite a bit less expensive, so double win!

For the chestplate, I stared by gluing two layers of cardstock together to give it a firm, stiff base, and covered one side in muslin for a more “polished” finish.

Matching up cardstock and fabric shapes.

Matching up cardstock and fabric shapes.

Cardstock back of the chestpiece.

Cardstock back of the chestpiece.

And fabric front, with a slight seam down the center to help shape it.

And fabric front, with a slight seam down the center to help shape it.

You can see my black and red suitcase on the floor, which just shows how hurriedly I was trying to put this together before we left for our trip.  I got the bracers made too; fabric shapes with cardstock bones to give them sturdiness.  I was planning on just tying the bracers on with ribbon, and I figured I’d do the same for the chestpiece since you wouldn’t be able to see the back or sides anyway, so the problem of keeping them on was easily solved.

bts4

Bracer with cardstock bones.

At this point, we really had to leave, so I just cut lengths of paper and used my rotary cutter to slice nice, straight even strips into them.  I packed my glue gun and other supplies I might need and we hit the road.

Our time visiting family was short, so we decided to shoot right after Christmas.  I spent one long afternoon of our trip bent over the chestpiece and bracers, hot gluing the ribbon strips to them as quickly as I could.  I alternated the colors, types and thicknesses  the papers frequently to give it more depth, using cardstocks, vellum and tissue paper.  Unfortunately, I was so busy feeling stressed about getting it done before the shoot the next morning, I completely forgot to take photos of the gluing-on process.  But you can probably imagine what a slightly-crazed woman wielding a glue gun in one hand, paper ribbon strips in the other, muttering dark curses under her breath, hunched over fabric/paper constructs and commanding the glue gun to heat up faster and just GLUE looks like.

The morning of the shoot came, and I’d managed to finish the costume (though my lower back was still complaining from having hunched for so many hours).  I knew I’d be doing a lot of work to the cancer-monster in post, so I simply had one black trash bag bunched up into a ball which Erick could punch, and I’d made a very, very rough wire frame for another black trash bag into something that was somewhat wing-shaped.

I scotch-taped the bags as needed to hold their shapes and let Erick pummel the central mass of the creature.  Geoff helped tremendously with flipping the cloak and holding the wings up for me to photograph separately and composite into the final image.  All said, it took perhaps half an hour.  The park we were in was just beautiful and quite deserted given the very cold weather and early hour, and I couldn’t resist taking some snapshots of plants covered in jewel-like snow.  I’ve said it before, but as a California-native, snow is UTTERLY MAGICAL to me whenever I encounter it.

Little Jewels

Little Jewels

Erick looked incredibly noble and at home in his costume, and I’m so glad Geoff reminded me to take a portrait of him not in action.  They’re quite different shots, but I think a lot of Erick’s quiet, inner strength and grace shows through, especially in the second portrait.

After that, we all had a lovely breakfast at a local cafe and warmed up with hot food and coffee.  A successful shoot!

I hope these image can be an inspiration to others fighting their own battles; perhaps simply reminders to not give up quite yet.  If you have had experiences with cancer or other long illnesses yourself, I would love to hear from you!  I hope I can make the cancer community proud.

And with that, let’s see the finished photos!

The Yellow Knight

The Yellow Knight

The Yellow Knight

The Yellow Knight -detail

The Yellow Knight -detail

Ribbon Armor

Ribbon Armor

Ribbon Armor - detail

Ribbon Armor – detail

Thank you, Erick, for coming to play in DreamWorld!  🙂

This is not the time or place to get into it all, but it seems I will be heading into another of my own health battles, of the bureaucratic nature this time, and any well wishes and prayers would be appreciated!

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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 🙂

Vanity's Murder

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

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

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.

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

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

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

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

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

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

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

Vanity's Murder - detail

Vanity’s Murder – detail

Vanity's Murder

Vanity’s Murder – detail

Vanity's Murder

Vanity’s Murder – detail

Vanity's Murder

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!

Click here to donate!!

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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