This is for you

When your appearance changes due to illness/ meds, it’s not about vanity, it’s about loss. Not recognizing yourself in the mirror while struggling to heal and navigate the changes in your life adds another level of stress and anguish. I say this because I’ve experienced it.

I’ve never had cancer, nor do I claim to understand how it feels to live with it. I’ve wanted to donate my hair for a long time, but recent events informed my decision to do it now in honour of loved ones – angels, survivors, and those courageously battling – this is for you.  #8or8


What Not to Bear

Last night, after watching two episodes of “What Not to Wear,” I was forced to dive into the world of female inadequacies.  Huddled beneath a blanket in sweatpants, my keeper and I, who, coincidently enough, had recently cut our hair in an attempt to feel better about ourselves, found it hard not to ooooh and aaah during each make-over reveal.  As I watched women tear up from seeing themselves in a new light, I felt conflicted.  I wanted so badly to believe in this “life changing process,” to duplicate it for myself, but I couldn’t help but wonder, in doing so, was I really just a consumerist sell-out?

Upon arriving home to my apartment, I resisted the urge to psychoanalyze my closet and sat down at my computer instead.  I posted a quote on my facebook recently by my favourite silent film actress Louise Brooks: “A well dressed woman, even though her purse is painfully empty, can conquer the world.”  Similarly, should I believe that “a well dressed woman, even though her body is full of pain, can conquer her Lupus World?”  Headaches, nausea and days spent in and out of bed seem to be a trend lately.  I’m drained.  Faded.  There’s no zest, no sparkle.  I blend into my bed sheets.  In an attempt at liveliness, I had my hairdresser give me bangs.  BANGS.  God, that sounds ridiculous.  I know I need to dig deeper.

Pain isn’t sexy.  Neither is dependance, cognitive blips, or needing 3 hour naps.  The self-doubt, self-loathing and fear that comes with all of that, well, that’s what not to wear.  That’s where the ugliness is, not in the disease itself.  Ah, so easy to say, but harder to live when you’re pacing across your living room trying not to puke.

Here’s some passionate, slam poetry inspiration to counter my evening of make-over reality t.v.:

Scrapping it out with the 7th Deadly Sin


Did you know that “sin” actually means “missing the mark?”  This makes a lot of sense to me, since I think we can all agree that the majority of us have missed the point of living quite entirely.  I don’t think it is any accident that as a result we are on the cusp of destroying our planet… and ourselves, but that is the kind of talk I promised not to post here, so I will get to my point. 

PRIDE.  The seventh deadly sin.  I never watched the movie “Seven,” but I think it ends with Gweneth Paltrow pulling something heinous out of a sack.  She named her child Apple, did you know that?  Sorry.  Just had to put that in there.  Vanity goes under the pride category and ladies and gents, it’s fighting dirty and I’m crouched in the corner desperately trying to protect my lady parts.  Lisa Ray, the beautiful actress living with cancer who inspired me to write this blog wrote a post about how she couldn’t understand why the biggest thing she was worried about was being buried with a moon face.  Oh dear Lisa Ray, I hear ya, girl.

Ok, now before you pull out the “Oh Elena, you’re still beautiful blah blah blah CRAP,” you need to just STOP.  Thanks and everything, but that does NOT help.  Be honest with me, people.  I’m being honest with you. My face is obviously fatter, unnaturally fat.  It doesn’t match my body AT ALL; my way too thin, sickly looking body.  I look like a Garbage Pail kid.  A bobble head.  Quagmire from “That Family Guy.”  Ok, so you don’t have to agree with the last three comments, but seriously guys, stop saying you can’t notice.  YOU CAN.  I can take it.  Just freaking admit it.  Did I mention that one of the other places that you retain water and weight when on steroids is your mid-section?  So not only do I look bony and gross, but I also have this weird gut sticking out.  I won’t even go into the “humpback” that might happen.  AND I guess I never mentioned that I have “thrush” right now, this disgusting mouth fungus (yes, I have a freaking fungus in my MOUTH) that happens in people with dysfunctioning immune systems.  It’s okay that you just reeled back in disgust just now because I’ve always been one of those people who sees someone’s cold sore and goes home thinking I’ve got one from being in the same room with it.  Yah, try getting a prince who has enough guts to wake up THIS sleeping “beauty.”  Even the most courageous and sincere and loving of Princes would have second thoughts.  By the way, I have been told that my eyes don’t always fully close when I sleep.  I find that horrifying.  Oh and have I mentioned that my BRAIN IS F***ED UP??  Great.  Great combination.  I can’t even go with the whole, “brains is sexier than the body” thing.  I saw this cartoon in the paper of this cute little cactus sitting alone on a table.  Another character in the strip says, “Who’s this?”  The doodle to the right says, “Oh, this is the lonely cactus.  He’s lonely because no one will hug him.”  “Well, of course no one will hug him.  He has spikes all over him.”  The cactus pipes up and says something like, “See, the inside doesn’t really count.”  It almost made me cry.  

To make matters worse, I had to cut off all my hair, which was down past my shoulders because there were big gaping holes when I put it in a ponytail and each time I shower more falls out and I stand there, blind as a bat, staring at these balls of hair, just staring and staring until I get out and take a picture of it.  You know, in the name of science, of medicine, in case you’d like to see how much I’ve lost.  Sick. I actually don’t think I will lose all of it.  I think it will get really thin and a bit patchy, but nothing crazy.  So, why do I even care right?  Because I don’t understand why I can’t have something, ANYTHING, that will make the rest of that stuff – the mouth fungus, the fat face, the belly that belongs to some other body, being home here in a home that’s not my own, the fact that I still don’t feel like I am well enough to spend more than two hours in public because I am scared my energy and strength will run out and I’ll make a scene – a little bit easier to take?  Can’t I at least have my hair?  My long movie star hair that was just starting to show off it’s slight wave?  Can’t I have that????  So I can at least cover parts of my fat cheeks with it??  Seriously.  

But that’s vanity.  Vanity in all it’s disgusting, powerful glory.  I am ashamed to taken in by it… I am literally in the “Paris Hilton Hall of Shame.”  Sigh.  I am sure you can tell that it has been a bad day today.   A very bad day.  A day where I was honestly wondering if I am in a coma right now or if I’m actually dead and this is the last of my brain activity or if I am actually in a mental hospital and my loved ones are sitting next to me watching me sit motionless in a chair by the window.  And there is a part of me that hopes it’s true, because than that means this is just another one of those crazy illusions my brain has created.  It means I don’t have a moon face.  How sad is that?  How incredible sad and pathetic is that?  You don’t have to answer that, because I know I have just turned into that damned cactus that made me cry.  Cartoons are supposed to be FUNNY, people!!

I’ll be fine.  Seriously.  No need to comment and make me “feel better.”  I just needed to post this because I want all those chronically or terminally or mentally ill ladies out there to know that I understand.  I understand how you feel.  It’s okay to at least want to feel pretty at times like this.  It’s funny because I used to wish the opposite.  I used to hate it when people would see me and say I looked great, when inside my body was in so much pain, when the rosiness of my cheeks was actually my butterfly rash.  I wished that my disease wasn’t “invisible,” that it would show in some way so that I didn’t have to go home and wonder if it was all just in my head.  Sometimes I would leave the puke in the toilet on purpose so that it would prove that I was actually sick.  Proof.  It all comes down to proof.  No one goes on blind faith anymore.  It’s not the “in” thing to do.  And now here I am, the foolish character in the story who gets the wish they thought they wanted.  Ah, poetic justice.  It gets ya every time.