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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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A Cry From The Darkness

A self portrait that belongs to my Eternal Storm series, which explores depression, anxiety and other mental illnesses. A Cry From The Darkness © Sarah Allegra – a self portrait – detail

Wow, it feels like FOREVER since I finished my last piece!  This year has not been conducive to creating art.  I’ve done my best despite the circumstances which kept popping up (moving, medications, long ME flares, devoting a ton of time to the gallery show, stress from my recent battle among other things) but it’s felt like a very dry year creatively.  All I can do is my best though, and even when the ME really cramps my style, I still manage to get pieces finished… just much more slowly than I would like.

It was in this depressed feeling of “I haven’t created anything in the longest time imaginable” that today’s image was born.  When my regular creative outlets are blocked to me (by, say, solid weeks of migraines as I adjust to each new medication dosage), I become despondent and depressed.  Life slowly loses its flavor and color and if I’m not careful, I’ll sink into a pit of despair just like Artax in The Neverending Story.  Luckily, I have Geoff and my friends and family around to cheer me on and make sure I never sink too low, but much of it is outside of anyone’s control.

As I mentally pictured how I felt, this was it.  A big, ugly cloud of despair, depression, worthlessness, swirling around my head.  But this time, unlike my last self portrait which explored a similar theme, I wanted to show a bit of hope at the same time.  The cloud is surrounded, penetrated and pierced by beautiful, golden rays of light.  They stream in through the darkness, weaving through its thick blackness.  The darkness cannot survive in the light.  It will be broken up and dissipate.  And while I know this will probably not be my last battle with depression, I also know that each round will eventually be over… and once again, the light will have won.  That is the hope I cling to when the clouds cover me.

I’d like to mention my friend and very talented photographer Robert Cornelius’s Dust to Dust series as it provided some inspiration in my planning out of the darkness cloud.  Thanks, Robert!  🙂  He’s an incredible photographer and all-around cool dude, so check out his work if you’re not familiar with it!

A Cry From The Darkness © Sarah Allegra - a self portrait

A Cry From The Darkness © Sarah Allegra – a self portrait

This image belongs to my Eternal Storms series on depression, anxiety and other mental health issues.  These topics are still seen as quite taboo to discuss, something I hope to help with by portraying what living with them is like openly and honestly.  Silence and shame never helped a single illness get cured.  We need to be able to speak openly about our experiences, without judgement or fear, if we’re ever going to healed from them.

A Cry From The Darkness

A Cry From The Darkness © Sarah Allegra – a self portrait – detail

A Cry From The Darkness

A Cry From The Darkness © Sarah Allegra – a self portrait – detail

 

Do you have depression?  Try being a little more honest next time a trusted friend asks how you are.  You don’t have to go into excruciating detail, but try to avoid the temptation to simply answer “fine,” unless you actually are.  And if you have friends or family who you suspect or know suffer from any kind of mental ailment?  Invite them to tell you about it, ask some questions, assuring them that talking to you is safe and you will not judge them or call them crazy.  It is crucial that you answer whatever they tell you with love.  It is incredibly hard for people to open up and talk to others about these problems, so take their trust very seriously and treat it with the gentlest and greatest respect.

A Cry From The Darkness

A Cry From The Darkness © Sarah Allegra – a self portrait – detail

A Cry From The Darkness

A Cry From The Darkness © Sarah Allegra – a self portrait – detail

As we approach Thanksgiving, let’s be thankful for the help and support we have.  For the people dedicated to helping us win our fight.  For the people who will listen to us with only love and understanding in their hearts.  The people who give us hope.  The inner strength we are able to find when we think we’ve exhausted it all.  Those extra beams of light when we need them the most.  We need more people like this in the world.  Let’s try and all be them to each other.  The simple fact that there are people in the world who try to reach this goal is something I am very thankful for!

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