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Crack of Doom

© Sarah Allegra

My regular viewers will probably remember that May 12th is Invisible Illness Awareness Day, or ME Day, in my house, for short. ...
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© Sarah Allegra

My regular viewers will probably remember that May 12th is Invisible Illness Awareness Day, or ME Day, in my house, for short.  It's a big day in the chronic illness community; it's our Superbowl.  Getting a new photo shot for this May 12th was an enormous challenge and there were many times I was sure it wouldn't happen.  I started planning this months ago, as I seem to always be scrambling at the last minute and I was determined to NOT do that this year.  Then, eight weeks ago, I began getting a recurring fever which took up nearly all my already limited time.  So I downgraded the first concept I had into something more manageable.  And the fevers continued.  This can't possibly last forever, I thought, and came up with another, simpler concept that would work with the time I had left.  And the fevers continued. 

So things went on until I was able to shoot this image just three days ago.  Getting an image turned around, even one without heavy compositing, can take weeks for me.  I crammed and pushed my body more than is probably wise considering the fragile state of my immunity, but I got it DONE.  Hah!  Take THAT, ME!
This self portrait is drawing from the historic plague doctors and the iconic masks they would wear.  I recently finished re-reading a favorite book of mine, Doomesday Book by Connie Willis, part of which takes place during the bubonic plague of the middle ages.  No mask-wearing doctors appear in it, but the thought was fresh in my mind.  That combined with the current Covid-19 pandemic, the scarcity of masks, thinking about immune systems and how easily they can be gotten around by a determined germ... and this was the visual that came to mind.
Of course, a May 12th image wouldn't be complete without it tying in to my experience with having ME(short for myalgic encephalomyelitis; a debilitating neuro-immune disease with no treatment or cure).  This year, I asked myself, how could I explain what it feels like to have an incurable illness to someone who's never experienced such a thing?  For once, a large portion of the world has actually had a small taste of ME, due to Covid-19.  The way Covid has forced you to stay inside, rarely see other people, isolate, protect yourself from any potential germs, taken away your livelihood, these are all hallmarks of nearly every chronic immune-compromised illness.  Except that for us, social distancing will never end.  Our isolation will never end.  We will never go back to work.  This is our reality for the rest of our lives.
This is not the life I want to live.  No one wants to live forced into a cage, denied the things that make life meaningful and enjoyable.  But still, this IS my life right now.  Until a cure can be found.  I'd gladly take even a treatment.  But the medical world has almost nothing to offer me or the millions and millions of others with ME (not to mention all the other disabling diseases like MS, fibromyalgia, Crohn's, EDS and so many more).  I cannot break this cage; I cannot pick the lock and let myself out to freedom.  But I can scream inside it.  I can shout and bang on the bars until someone notices; until enough people notice.  And once they notice, they will start demanding freedom for us too.  
And maybe, someday, I can actually leave behind this dirty, nasty, bug-infested prison and feel the sun on my face again before I die.

Our illnesses are invisible, but we often feel invisible too.  When you drop out of society, only your close friends and family will notice.  People who've never met you have no idea that there's a Sarah-shaped void where I used to be; they simply fill it.  Chronic illness hides you in its shadows as you're unable to leave your house.  I will not be kept secret; I will demand attention and action.  ME is an iron mask and shackles, hiding my identity, my potential and my value as a human being.  I will not be hidden anymore.  The mask is coming off and there WILL be change.
If you would like to be a part of this change, please read my blog post for more information about how you can be the ally we desperately need: 

You can learn more about ME and other invisible illnesses, there's a petition you can sign, the Millions Missing campaign you can join, excellent documentaries you can watch for free, images you can use as your avatar for the day (or longer!), or, if you'd like, you can donate to ME Action, an organization doing great things for people with ME:
But if you do nothing else, I ask this of you: believe people when they tell you they're sick, even if they don't look like they are.  Not every illness manifests outward signs.  Just acknowledging that ME is real, despite me (and others) still looking "healthy" on the outside is a huge step forward.  Every person in the world afflicted with these evil, insidious illnesses will thank you, starting with me.  <3
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