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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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Hey guys!  2016 calendars are HERE!!

First, let me quickly update those of you who are regular readers.  You may remember my Preparing For Battle post where I talked about… well, preparing for the big battle I was about to face.  I was sick with stress and worry about it; it was honestly one of THE hardest things I have ever had to do.

But guess what?  I WON!!!  I’m afraid I still can’t give many details about the nature of the fight, but this is a huge, wonderful victory for me and will help make my life a little bit easier.  So thank you VERY much to each and every one of you who said a prayer for me, lit a candle, sent Reiki or good thoughts… they all melded together and produced one hell of a win for me!

Now, with that’s said, let me tell you about my calendars!

Sarah Allegra 2016 Calendar

Sarah Allegra 2016 Calendar

These guys are always a favorite; they’re probably my single best-selling item.  And with good reason!  Red Bubble packs a ton of quality into these babies with thick paper, almost like a heavy cardstock or watercolor paper.  The pages have a subtle sheen without being shiny.  The daily squares are big enough to make notes in.  I still have calendars (both my own and from other artists) from years ago which hold up beautifully, even after years of flipping through them to see the lovely pictures!

Sarah Allegra 2016 Calendar back

Sarah Allegra 2016 Calendar

This also brings something else up: getting this calendar is like buying 12 small prints of my work!  Each year’s images are different, making each year a unique and collectible item.  And if you want to keep the calendar after the year is over, like I do, to enjoy the images whenever you want to pull it out?  That’s fine!  Red Bubble does a great job at printing the images and making them look the way I want them too; this is a solid buy!  You’ll get images which span across my series, from my DreamWorld, Enchanted Sleep, Eternal Storms to self portraits, which feature Katie Johnson, Dedeker Winston, Travis Weinand, Noemi Regalado as well as the beloved author of The Last Unicorn, Peter S. Beagle!

Also, while I was uploading a diptych of Travis for one month of the calendar, I noticed that it made a really awesome pattern for Red Bubble’s leggings.  So get your Travis-printed leggings now!  😀

Travis Leggings

Travis Leggings

All of us independent artists and craftmakers REALLY appreciate your purchases, whether it’s for Small Business Saturday, Cyber Monday, regular holiday shopping, something for yourself, or any other reason you might have!  Please keep shopping small in mind during this holiday season!

And remember if you want to support my art with your purchases, there are always museum-quality prints of my images that you can buy, my online self-discovery-through-photography class Introspective, the Peter S Beagle e-books that have my images on their covers (but buy his other books too!), along with Red Bubble which has a myriad of other items with my images on them.  Everything from stickers to leggings to mugs to laptop/iPhone covers.  There’s really something there for everyone 🙂

A smattering of offerings from my Red Bubble shop

A smattering of offerings from my Red Bubble shop

And don’t forget to check out my friend Jessi’s Etsy shop, The Hopeful Spoon, full of beautiful, hand-made earrings (and other jewelry pieces coming soon!) full of lovely semi-precious stones at very reasonable prices.

One of Jessi’s many offerings!

She also has a section dedicated to raising awareness about different illnesses, which would be perfect for the spoonie in your life!

The Hopeful Spoon

Thanks to everyone for your patronage!  Artists like myself could not survive without help from people like you 🙂

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