It wasn’t long ago when I heard Rob Thomas’ song “Her Diamonds” for the first time.  It was in the car after frantically changing the channel from a Disney star that shall not be named *coughmileycyruscough* much to the objection of my two Hannah Montana obsessed pre-teens in the back seat. I remember it striking me the moment I heard the lyrics…they spoke to me unlike any words I had ever heard put to music.  I couldn’t explain the connection to them…I just knew they explained ME.  A few days later I heard Rob in a radio interview explaining that he had written the song for his wife, Marisol, who suffers from a rare autoimmune disease similar to Lupus (they never specified which one).  Immediately I knew why the song had such a stronghold on me.  He WAS speaking to me…just as he was speaking to his wife and the millions of us out there that suffer every day with pain that no healthy person could ever come close to imagining.

Just as The Spoon Theory  puts into words that loved ones can understand how it feels to be sick, Rob Thomas put into song how much it hurts and how at times it hurts so much that it seems easier to give up and give into than it does to fight.  Fighting is hard.  Fighting takes 90% of my spoons that I have and even the ones that I don’t have.  Spoonies know what I’m talking about….the ones stashed in the secret drawer in the kitchen along with the Easter chocolate you swiped from your kids’ Easter baskets when they weren’t looking.  C’mon, I know I’m not the only one who does that.

The words are powerful and it got me thinking about the other side of illness.  We Spoonies are sometimes so caught up in how we feel and how our diseases affect us, that we don’t see the toll they take on our friends and family.  Often overlooked, they suffer in silence with us.  They nod sympathetically when they simply ask ‘what hurts’ and we spin around with our Michelin Man knees and scream something to the effect of ‘well, my earlobe doesn’t hurt, does that answer your question??’  They sit in a chair across the room wishing they could help, that for one moment, they could take our pain away from us and give us a precious one hour of freedom….just 60 minutes of being able to bend down without your joints crackling and snapping like dry chicken bones or being able to walk outside, stare at the sun and be more afraid of Mount Washmore that’s sitting in the dirty clothes hamper at any given time, rather than sunlight.

One of my friends jokes with me that I’m a super hero.  I just laughed at it for a long time until one day I realized, maybe I was a super hero.  I’m not talking like Wonder Woman super hero, although who wouldn’t like a lasso of truth and an invisible jet?  Although I’d be so screwed with an invisible jet….I’m sure it has invisible keys and I am famous for losing the ones to my car at least once a day.  Trying to find invisible keys would be like trying to find diet chocolate cake….an exercise in futility.  Yeah, I totally got off tangent there!  Spoonies may not be super heroes but we have definite super hero tendencies.  Clark Kent went into a phone booth and in seconds transformed from a dorky newspaper reporter to a flying six pack in a unitard.  You know, come to think of it, the unitard doesn’t work for me….I think I prefer Clark’s boring suits.  But my point is this (yes I actually have one) most days we ARE Clark Kent…we’re weak, distant and hanging on by a thread.  Then some days we nose dive into that telephone booth and put on our sparkly unitard and cape and totally kick the day where the sun don’t shine.  Oh, see there?  You liked how I brought it all back around to lack of sunlight don’t ya?  Yeah ya did.

It’s the days that we channel our inner Clark Kent that we don’t stop and think of the person sitting across from us…the one that cries when we’re not looking, or feels helpless to stop the destruction of someone they love right before their eyes.  They hurt too and yes, sometimes they don’t know how to handle it….just as we don’t know how to handle our bitterness sometimes at being plucked out of blissful obscurity and kicked with an iron boot into a world where you spend more time with people whose names end in “ologist” than your own family and friends.  Sometimes I know I can occasionally be hard to live with *cuts eyes at snarky friends with their mouths open* because I want them to understand the double edged sword I wrestle with.  *disclaimer…don’t wrestle with swords unless you do that sort of thing for a living*  I want them to know first hand how bad I hurt…how much it takes for me to smile sometimes and tell them that I’m alright…when I know I’m anything but….however I don’t want them to know how bad I hurt.  I would never want anyone to know how bad it hurts. 

I’m scared.  Ok?  There.  I said it.  I’m scared that someday my disease will win.  I’m scared that someday my unitard will be taken away and all I’ll be left with is some tattered clothes and kryptonite undies.  (Yeah, that visual disturbed me a little too…)  But sometimes I do stop and think…..I’m probably not the only one who’s scared.  Those that sit in the corner and watch with pained eyes are scared too.  They have the same fears I have but can’t let me see.  Just as I feel like I have to be brave and strong for them….they feel the same.  It’s exhausting for everyone involved and it’s a never ending merry-go-round…but we’ll all ride it until it stops.  We have to. Bringing this back to where I started, Rob Thomas told Mari just how his side of the merry-go-round spins.  That was brave and it was appreciated.  In case some of you have been living under a rock, here are a few of the lyrics.

Her Diamonds

Oh what the hell she says
I just can’t win for losing
And she lays back down

 And I don’t know what I’m supposed to do
But if she feels bad then I do too
So I let her be

And she says oooh
I can’t take no more
Her tears like diamonds on the floor
And her diamonds bring me down
Cuz I can’t help her now

By the light of the moon
She rubs her eyes
Says it’s funny how the night
Can make you blind

I can just imagine…

It is now that I am taking the opportunity to speak directly to you.  Yes, you…the one that understood that I couldn’t talk on the phone with you because I was sick from the chemo injection…and you, the one that I cancelled the entire dinner party I had planned 4 hours before you were supposed to be here because I couldn’t get out of bed….and you, the one that tells me that I don’t look sick but don’t say it with a raised eyebrow, but with a face hopeful that I will believe you.  Thank you.  I don’t say it enough.  I probably don’t say it at all to be honest.  You don’t know what a dark and lonely world it can be for me when no one knows truly how I feel and how much I long for the life that I remember.  Sometimes I feel alone in a crowded room and deaf in a world full of music.  Don’t try to understand me…just support me.  Don’t try to make it better…you can’t.  Don’t turn your head when you cry….it makes me think that I have to, also.  Don’t wish for who I was….wish for what I can be.  That’s all we can do…we get through it one hour at a time and at the end of the day we let our own “diamonds” fall to the floor.  There are times that we can scoop them up with that reserve spoon we always try to keep locked away…then there are times that they have to stay there until the night is over.  Instead of holding your diamonds close against you…let me see them, and maybe, just maybe I’ll let you see mine.

Essay written by: Stephanie Kennedy