Posts Tagged ‘butterfly’

What Else Can I Say About ME?

Here we are at May 12th again.  Another Invisible Illness Day come to bring awareness to all the illnesses and diseases which are impolite enough to leave their sufferers still appearing to be well.  Of course, anyone more than casually acquainted with someone who has fibromyalgia, myalgic encephalomyelitis, chronic fatigue syndrome, complex regional pain disorder, multiple sclerosis, rheumatoid arthritis, Crohn’s disease, Lyme, lupus and many, many more illnesses can attest to how debilitating they can be.  The facade of health they leave intact feels like salt in the wound; a confusion for those untouched by their cruel hand, a silent undermining force with us at every doctor’s appointment, a declaration that we are lying or greatly exaggerating our illness.

What else can I say about ME?  About all the other forgotten, ignored diseases swept under the rug of modern medicine?  Illnesses which embarrass our doctors with their constant reminder that we remain unhealed.  Sicknesses with confusing, confounding symptoms which can morph and change like the whim of a butterfly’s flight.  Maddening maladies which suck away our vitality, our joys, our passions, our lives as completely as any vampire.

I’ve written about ME extensively as it’s been an enormous part of my life for the last eight years.  How I have not had a single day since late May of 2008 that was free of pain or its constant, overwhelming exhaustion.  How it has progressively gotten worse each year.  How the government would like to pretend we invisibly ill don’t exist.  How grotesquely underfunded our research is, giving us the same amount of money for research as hayfever gets and less than 1/4 of what male pattern baldness receives.  You have heard me spout the facts and statistics.  You’ve heard me talk about my personal story and fight with ME.  What else can I say?

I can say this: I am not beaten.  I have not given up.

I am determined to get better.  I am committing myself to be well, even if I have it about through sheer mental will.  I will not give in to ME’s gloomy, hopeless future forecast of progressively worsening every year.  I am not accepting a future of the living death that is ME.

I don’t know exactly how I will get better, but I am going to.  As a sign of my determination, I changed my blog’s tagline for the first time since I started this blog years ago.  “Art, photography, life and why I always feel like shit,” felt perfectly appropriate at the time.  “Art, photography, life and how those are really all the same thing,” is much more appropriate now.  My identity is not Sarah-who-has-ME.  I am just Sarah.

As I wrote about in my last entry, my life has been pleasantly consumed recently by my spirituality.  I have strongly felt how focusing on fighting ME has been feeding it.  So now, I will ignore it as much as possible.  I do not mean that I will forget my body’s current limits, or not honor them.  Listening to my body and what it’s able to do is vital for my current and future wellbeing.  But I’ve realized that I can live within the confines of my case of ME while still not letting it reign in every area of my life, and that feel incredibly freeing.  This is the path I will pursue.

This also does not mean that I will not advocate for ME sufferers.  I still feel very strongly that the only way we will bring about change is by demanding it.  And we can only demand it if we know that it exists in the first place.  But I can also advocate without allowing ME to rule every part of my soul.

As May 12th approached, I wanted to create a new image for my Enchanted Sleep series, which is all about living with ME.  I asked Katie Johnson, frequent model and collaborator as well as dear friend, if she would help me bring some concepts to life and she gladly agreed to help.  Through a variety of factors, I wasn’t able to shoot these images until very recently, which meant I had a very short window to edit one up and release it for Invisible Illness Day, but I got it done!  Ideally, I would be releasing the whole short series we shot, but I am content with having just one to show you and help illustrate life with ME.  With that, please let me present my latest image to you, Living With The Tombstones.

Living With The Tombstones

Living With The Tombstones – © Sarah Allegra. Model: Katie Johnson. An image to help raise awareness about ME/CFS and other “invisible illnesses.”

I probably don’t have to explain the symbolism behind shooting this image in a graveyard.  ME (and many other invisible illnesses) truly can be a living, nightmarish death.  Even if you’re not one of the unfortunate souls cursed with severe ME, where any touch, light or sound cannot be tolerated, you die every day to the dreams and hopes you had when you were healthy.  You might discover new passions to pursue within ME’s confines, but do you ever truly forget what’s been taken from you?  If you do, I am not there yet.

I took the name “invisible illness” and interpreted it quite literally, editing out any part of Katie’s body which showed outside her long, princess-like dress.  And the mirrored mask felt like the perfect touch.  When people look at us, they rarely see us; they see their projections of who we are.  Often what they see says far more about them than us.  Some will look at me and, because I can occasionally manage to put on clothes, have Geoff drive and go with him to the grocery store, refuse to believe there could be anything physically wrong with me.  They don’t see the toll that those short, simple trips take on me.  They don’t know that grocery shopping is my ENTIRE plan for that day, probably several days.  How the lights and noise and bustle inside the stores give me migraines, panic attacks and leave me in bed for the rest of the weekend.  They don’t see the weight of my illness on Geoff and my family.  How if I see friends, they always have to come to me.  I so often feel like a dead-weight wife, daughter and friend.  The times I’m overwhelmed by the ME and can’t decide between crying and being too tired to cry.  How many pills I take every day to try and make it to the next day and not be consumed by the constant pain I’m in.  They just see a fairly normal-looking girl.

I can’t blame other people for not knowing that I’m sick.  I don’t display the characteristic signals of someone who is unwell, so of course people assume I’m healthy.  But we need to get to a place where I could tell a stranger that I have ME and they might know what I’m talking about.  That if someone else said they have MS or Crohn’s or fibro, that stranger would have heard of those illnesses.  That the stranger would have at least a basic idea of our struggle and the dire need for change, for research, for treatments, cures and basic respect.

We can get there.  We will.  One May 12th at a time.

Want to do more?  I can help you with that!

I’d like to thank everyone in my life, online and off, who has supported me during these trying past eight years.  Especially Geoff, who I’d only been dating for a month when I became ill.  Lesser men would have run from what he had to face, but he’s stuck with me, no matter how bad things get.  And I’d also like to thank everyone for the extremely warm and receptive response you all had to my previous blog post.  Your kind words and love and support are greatly appreciated, now and always! ❤

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Close up of In The Lilac Forest

Close up of In The Lilac Wood

This photo and post was supposed to go up over a week ago, but some MAJOR computer problems which ended in having my entire operating system having to be reinstalled slowed me down considerably.  (Let me briefly insert a shout out to my Computer Guy; Ara at Crown City Computer.  He knows his shit and is more than reasonably priced.  No one else touches my computer; I totally trust him.)

I had planned on releasing these to coincide with both Peter S. Beagle‘s birthday on April 20th, and the launch of the Last Unicorn cross-country movie screening tour!  The tour is going to be amazing; not just will you get to see the fully-restored gorgeous film on a huge theater screen, but Peter will be there to do signing, a Q&A, and they’ll be selling more Unicorn merchandise than you can imagine.  Check the official tour site to see if they’re coming near you; you can write to them if you’re area isn’t listed, and there are a number of ways you can help out with it too!  I was very sad to have not been able to dash up to San Francisco for the inaugural night, but with any luck, the tour will find itself in Los Angeles before too long 🙂

While nasty, external, computer-virus forces made me change my plans, I’ll still release this photo in honor of Peter’s birthday and the start of the tour!  Happy birthday, Peter!!

I wanted to take some of Unicorn and bring it into DreamWorld, so I decided to build a special corner just for it.  The evocative first line of The Last Unicorn reads, “The unicorn lived in a lilac wood, and she lived all alone.”  So, I decided to build my own lilac wood.

I pondered over ways I could do this, hopefully without spending any money, as I was quite broke.  It happened that I already had a large supply of beautiful fake flowers, which I had purchased for a different DreamWorld photo, and I also had several yards of a nice gray/green fabric.  The fabric would be a nice backdrop, and I could smother it in flowers.


Assessing what I had to work with

I debated between sewing or hot gluing the flowers on, and decided on hot glue in the end.  Sewing would have assured no damage would have been done to the flowers, and a very easy removal process (since they would all eventually have to come off to be used in the projects they were originally intended for) but would have been a much more labor-intensive and time consuming process.  Being short on time, I went with hot glue, thinking that I’d mostly be applying it to the flower bases anyway, which you won’t see much of in this photo, or the other photos they’d appear in.  With that solved, I started with gluing a healthy covering of leaves to the fabric.  I wanted enough on as a base so that as little fabric would be seen as possible.

Gluing leaves on.

Gluing leaves on.

The couch became the holding area for my flowers, which I sorted roughly by color.  I was trying to minimize the use of the white/creams and pinks, since it is a lilac wood, but I knew I’d end up needing at least some of them, both to cover my whole backdrop and to give it a more natural variance.

Flowers sorted by colors.

Flowers sorted by colors.

It became apparent that draping the fabric over the coffee table was just not going to work; I couldn’t see enough of it at once.  I was carefully planning where the different colors of flowers would go, and being able to only see a segment of it at a time wasn’t working.  So Geoff helped me move the coffee table and I took over the entire living room with leaves and flowers and fabric.  Geoff is always extremely good-natured when I do things like this, which is fairly often.  🙂


I started simply placing the flowers where I thought they should go, and when I felt more confident in their placement, upgraded to hot gluing them on.  I knew I wanted one side of the finished photo to be a bit lighter and pinker, and the area behind where I’d be standing to be more dark and purple, so I tried to at least roughly stick to that plan.

I also have to say, my cats both showed heroic self-restraint in not trying to eat all the flowers.  They should be commended, as I’m sure it was no easy task.

Byron did try to help several times, but that's just being polite.

Byron did try to help several times, but that’s just being polite.

Hot gluing continued until I had my whole backdrop covered!



Since the photo was going to be a self portrait, and since I do not look like a unicorn (sad, but true) I wanted to include something that would be a nod toward unicorn-ness, beyond the white hair.  Taking a cue from Amalthea’s forehead mark that looks like a flower, I crafted a little flower amulet with an amethyst-colored crystal in its center.  Simple, but quite pretty!


You can’t really see what a pretty (and sparkly!) purple the crystal is in this photo, but I can promise you it was beautiful!

With everything created, I set out to take my self portrait the next day.  I absolutely love our house, but it is small, and it can sometimes be challenging to take photos inside it.  After weighing a number of factors (including the important one where the cats want to play with any backdrops) I decided to set up in the bedroom.   I used masking tape to hang my flower-covered backdrop, and even with the TONS of flowers covering it, it remained light enough to stay up.  The camera was perched precariously on a hardcover book in the middle of the bed, and every time I sat down to change the settings, it moved slightly, so this was far from an ideal setup, but I managed.  I used my new lights and gels, using a blueish gel on one and a purple gel on my hair light.  I sat on the stool, which helped keep me pretty consistently placed.  Overall, it was a bit crude, but it worked!

My "studio."

My “studio.”

I took several shots bringing parts of the backdrop closer to the camera, to give a greater sense of depth to the photo, holding the butterfly in various positions and flipping my white wig around.

With the how of the photo’s creation done, I’ll talk a little more about the why.  I’m sure you are all very familiar with me talking about what a monumental impact The Last Unicorn has had on my life.  It inspires me both in art and in life.  I identify strongly with the characters, but perhaps most of all with the unicorn, feeling trapped in a dying body not her own.  With my constant health battles, I often feel a prisoner of my body, that my soul must have been designed for some different kind of housing.  Yet it’s through the unicorn’s entrapment in her human body that she grows and becomes greater and deeper.  She learned to love, she experienced heartbreak, she knows regret.  Even returned to her true, unicorn body, she carries those lessons with her… and while they have made her a better and more complete being, they were not without pain.  It’s a heartening story for me to remember and think that one day, I will see how my trials and suffering have changed me into a more complete being too.  I hope 🙂

The butterfly, like the one in the book.

The butterfly, like the one in the book.

The finished amulet, attached with garment tape.

The finished amulet, attached with garment tape.

A red, bleeding rose over my heart, touching on the pain and heartache the unicorn endured.

A red, bleeding rose over my heart, touching on the pain and heartache the unicorn endured.

The hair wind-whipped into a horn-like shape, giving off a bit of a glow.

The hair wind-whipped into a horn-like shape, giving off a bit of a glow.

I hope you enjoyed hearing more about how and why this photo came to be!  And a very happy, if belated, birthday to Mr. Beagle 🙂  I hope he realizes how many lives have not only been touched but utterly changed for the better because of his writing.

In The Lilac Forest

In The Lilac Wood

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