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 – © 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!

• Rent or buy the new ME documentary, Forgotten Plague.  Consider hosting a screening of it for your friends and family!
• Write a one-click letter to Congress to increase ME’s funding.
• Join in the #MillionsMissing protests in Washington DC and other locations through the world on May 25.  You can participate even if you’re too unwell to join in person or if there isn’t a protest near you!
• Wear a blue ribbon in real life or add one to your social media avatar.  Thanks to MEAdvocacy.org for the instruction!
• Start a discussion, link to articles, blogs, videos and/or artwork that discusses ME or other invisible illnesses that will help spread awareness.  Add a #may12th hashtag to your posts!
• Donate to an ME-related group, such as the Microbe Discovery Project, or help support those with invisible illnesses by purchasing items from our online shops.  Get some cute awareness-raising jewelry from The Hopeful Spoon, crystals to meditate and heal with from Mineralism Crystals (or just enjoy looking at!), museum-quality fine art prints from yours truly, give yourself or someone you love the gift of self discover and art with my online photography course Introspective, or a wide variety of fun and practical items from my RedBubble shop!
• See this article from ProHealth.net for more ideas!
• Watch and share the video below which I made last year:

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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Upcoming Events!

I’ve been pretty quiet online (for me) recently, but only because I’ve been VERY hard at work at some really cool, exciting things!  Hopefully I’ll be able to show you the fruits of my labor soon 🙂

In the meantime, I wanted to tell you about two fundraisers I’m participating in, which both happen to be this Saturday evening.

One is to benefit a theater group which my neighbor is involved with, Parson’s Nose Productions.  In their own words, “Parson’s Nose Theater is a non-profit, 501(c)3 theater company located in Pasadena, CA dedicated to introducing the classics to audiences of all ages. Through condensed adaptations of the works of Shakespeare, Moliere, Shaw, Goldoni, Goldsmith and more, we enrich the lives of the old, young, and in-between by introducing them to the works of some of the greatest writers who’ve ever lived. Our productions are presented in a fun, commedia dell’arte style that makes them both engaging and easy to understand – no sleeping through a two & a half hour Shakespeare production here!”  I can testify to the fun and inventive plays they put on!  As a non-profit organization dedicated to bringing classic art to the public, they have periodic fundraisers to allow them to keep doing what they do.

This Saturday, they will be hosting their On The Radio Fundraiser, where they will be performing some classic comedy acts from the likes of Abbot and Costello, Jack Benny, Allen’s Alley, and George and Gracie.  In addition, there will be a silent auction where you can bid on a gorgeous, museum-quality, completely archival, framed and mated, signed and numbered, 10″x15″ print of my photo Saturn Ascends:

Saturn Ascends

The event will take place in Pasadena, CA at 7:00pm.  Their site has all the details and you can RSVP there.  It’ll be fun!

 

If you won’t be in California this Saturday but will be in Arizona instead, you are in luck!  Heaven’s Heroes is holding an event with great food and music to benefit Andrew Ashcraft’s family.  Andrew is, you’ll remember, the boy I grew up with who died along with the rest of the Granite Mountain Hotshot crew.  Andrew left behind a young wife and four very young children, the oldest of whom is merely six, so you can imagine that they could use a lot of financial help, especially as they are currently being denied the full benefits owed them.

Since I created the image To The Lost to honor him and the other Hotshots, it seemed only fitting to donate a print of it to the Heaven’s Heroes event.   This print is also gorgeous, museum-quality, fully archival, signed and numbered, coming from a very limited run of only 10 prints in this size, 15″x15″.

To The Lost

 

The event will take place in Gilbert, AZ starting at 6:30pm.  Also, if you have not done so, please take a moment to sign the petition to grant the Hotshot families left behind full benefits.  They deserve it; it’s the right thing, and it only takes a few seconds.

Hope to see you all at one of these events!

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