SIGN Language


I’m really tired today… a week of restless, topsy-turvy, bed-headed non- sleep.  

With no Hepatitis in sight, ma petit foie (that cartoon liver of mine) is easing up on it’s squeaky complaints, but just as Imuran leaves the scene, another kid arrives on the toxicity block.  It’s the “Big M” –  Mr. Methyltrexate; a cancer drug that Rheumatoid Arthritis patients take in lower doses and apparently, Lupie patients too.  And so, the search for a suitable replacement for my old friend Cyclophosphamide (Chemo) continues.  

After going up a whole 7.5 mg of “Evil P” (which is most likely the cause of my nights of non-sleep), I am now holding steady at 10 mg of Prednisone.  I haven’t started the “Big M” quite yet.  I told my rheumatology nurse today that I decided to forgo my other option, Cellcept; the side-effect heavy drug I sidelined in favour of Imuran.  The Big M has it’s own list of sicky-ickyness, but the info sheet claims a bedtime dosage could relegate all the pukey, achy fun into sleepy slumber.  Sure, as long as you can actually sleep.  Of course, it’s stupid to speculate on such things when I haven’t even received a call from the pharmacy to pick up my new bag of goodies.  

“People on Methyltrexate can be flare free for up to one and a half to two years.  That’s what we want, isn’t it?” My rheumy nurse asked as I stared at the Methyltrexate Info Sheet.  I nodded.  Sure.  One and a half to two years.  That’s good, right?  That’s good for a Lupie like me, right?  I had always convinced myself that I was one of the lucky ones…  just a mild case of Lupus, that’s all this was.  I’m fully realizing the extent of my denial.  How can it be mild when I had organ involvement from the very start?  I was never medicated properly.  To Dr. H, my wonderful new rheumatologist, well-medicated means little or no pain.  Me?  I thought properly medicated meant somewhat tolerable pain.  It had never occured to me that a person with Lupus could live without pain even if they were taking meds.  

“Take your time,” my rheumy nurse said reassuringly.  He was talking about the choice between Cellcept and Methyltrexate of course, but I was thinking more about the choice to literally TAKE MY TIME, to take it back, to OWN it, even if it’s just for a year or two.  Let’s make it pain-free.  Let’s work part-time.  Let’s make it MY TIME.

 Yes, please.

I glanced up at the torquoise hospital sign that was hanging above us as we spoke in the corridor.  The rheumatology clinic was in repair, resulting in a temporary change of location in the general hospital.  I had found my way there with slow and careful steps, wary of the queasy feeling in my stomach.  Sick people were everywhere, on wheely beds and chairs, beside me in the elevator… ME in the elevator.  My brain fuzz clicked on, buzzing like a neon sign at dusk.  When I approached the unfamiliar receptionists, that’s when I saw it.  The white lettering on the floating, blue-green sign said:  NEUROSCIENCE.  Out of every unit in that hospital, Rheumatology was moved to Brain Central.  I managed to smile at the cleverness of the Universe as flashbacks of Lupus Cerebritis psychosis filled my fuzz-buzzing head.

With one last glance at the sign, I navigated my way back to the elevator.  Almost immediately, I passed another unit to my right that I hadn’t noticed before:  


I smiled effortlessly this time.  Nice one, Universe.

These Boots Are Made For…

I was zipping up my boots today and as I carefully pressed back the fuzz of my wooly socks, I had a thought that froze me in mid-zip: “It’s nice that my brain is letting me zip up my boots.”

Recently, I had the opportunity to speak with someone who is living with Multiple Sclerosis.  Her brain doesn’t let her leg do very much of anything, which is why she walks with a cane.  She is courageous and beautiful as she waits out the progression of her disease.  “This wasn’t the deal.  We had a deal,” she said, in reference to her body.  She continued to converse with the other people sitting ’round the table and I let a few moments pass until I spoke up, speaking more to myself, I think, than to her:  “I don’t think there was a deal.”  She paused and looked at me from across the table.  “No, you’re right.  That’s the thing… there never was one.”  The truth is, our bodies don’t owe us anything.  Our brains don’t have to do what we tell it to.  There is no agreement.

I think of her and I “pray” for her.  I say “pray” in the sense of trying to send good thoughts and hope and love out there, so that somehow, somewhere that person could feel some part of it.  I recently had tea with a religious friend who smiled at me and said, “There is always someone praying for you, not just your friends and family or people who know you, but people far away, people who have never met you in their entire lives… they are thinking of you and praying for you too.”  An image immediately surfaced in my mind:  A man’s dark silhouette perched atop some distant mountain peak in the Himalayas, his eyes are closed and he is thinking of me, putting aside a bit of hope for a stranger across the sea.   I turned my back on organized religion long ago, but my spiritual soul could not help but smile at the thought.  I believe her.

Oh, and I have been informed that yes, I have indeed put my Raynaud’s affected hands in someone else’s armpits in order to benefit from the area’s exceptional resource of body heat.  I forgot.  Memory disfunction is very  common with Lupus.  Thankfully, my keepers are quick to provide the missing pieces.  And don’t worry, I don’t put them in just anyone’s armpits.  At least a decade of rapport seems to be required.

My brain let me run today too.  Gym visit #3.  And when I say “let me run,” I would have to say “barely.”

I am assuming your brain let you zip up your boots today (assuming you have boots) and so I ask you:

Isn’t that nice?

Harry Potter, Jesus, The Creator and Me

Yes, I was Harry Potter for Halloween this past year and yes, I went to Value Village and bought a 10 year old boy’s costume and YES, I wore it all day at work and walked proudly around the halls of the University of Manitoba with it.  And yes, my friends, I am THAT cool.  Now for those of you who saw the word “Jesus” in the title and are now worried that I am going to say that my Lupus Cerebritis caused me to be a “born-again Christian,” please calm down. The title is referring to some of the FASCINATING things that my brain was pumping out during the height of my “mania” in the hospital.  I would recommend that you all stop what you are doing, grab a cup of tea, turn off the music, plop down somewhere comfy and get ready for some mind-blowing brain talk.  You know how some stroke victims start talking in an accent from a place that they’ve never been before?  Yah.  THAT kind of brain talk.  

I am sure that you can all tell by now that I am a lover of the (well-done) good vs. evil epic.  Harry Potter, Lord of the Rings, Star Wars; they all stir in me the kind of excitement you see in some people’s faces as they watch a really bloody hockey fight or one of those extreme fighting matches.  For me, there is nothing more exciting to watch than a perfectly executed hand to hand combat scene – think Jet Li in the movie “Hero” or the battle in the 2nd LOTR movie (my favourite, by the way) or the magical duels in the Prophecy Room at the Ministry of Magic in Harry Potter 5 (the BOOK, not the movie).  Show me a man with a sword and I show you my heart.  Now THAT’s a real man.  Men with guns just don’t do it for me.  Anyone can pull a trigger.  Who do you know that can run for three days straight and then kill 300 orcs all by himself?  Yah.  I didn’t think so.  I, of course, am talking about Aragorn from Lord of the Rings, the character that exemplifies the goodness that we all strive for, the King that will return and save us all.  Now you would think that I would want to play the part of Arwen, his lady love, the tragically beautiful and magical creature that has stolen his heart.  Those who know me well will be shocked to know that no, I would not like to be her at all.  I would rather play the White Lady of Rohan, the woman he rejects, the woman who disguises herself as a soldier and cuts the head off of the darkest of warriors while standing above the body of her dead father. Yes, in the end, I would rather be holding a sword than holding the man.  And these days I have getting a feeling that perhaps I was a woman warrior in a past life.  I remember watching the Disney Movie “Mulan” for the first time and when the scene comes up where she cuts her hair off and steals her father’s armour, I remember getting this shiver up my spine and that my eyes welled up with tears.  The same thing happened at the end of the movie when she comes out of the palace and she watches millions of people bow down at her feet.  I recently borrowed the movie from my sister when it came out on DVD and my reaction was the same.  I have also been drawn to characters like Joan of Arc, I love anything connected to ninjas (mastering a martial art has always been on my “bucket list” and I LOVE “Kill Bill”) and Leonardo was my favourite Ninja Turtle because he was the leader and he had the swords (no brainer).  Now you can say what you want about reincarnation, but when you’ve actually experienced what it’s like to leave a body and then re-enter one again… well, it’s easier to believe that you’ve lived in more than one.  But sadly, I know I would not be cast as the beautiful and strong White Lady of Rohan, but in the role of Frodo.  Anyone who has watched LOTR with me (and I have watched it MANY times) can attest to the fact that I will complain about Elijah Wood at least three to five times each movie.  I feel badly for this, since I am now realizing that he really did do a great job with a very difficult character.  He really captured in his eyes the way it feels to be the “chosen one,” the fear, the loneliness, the anger, the eventual acceptance.  I would impatiently exclaim, “Alright already, you’re sad about it, we get it.  Just go and do it already.  Stop making everyone more sad than they already are.”  How insensitive of me.  

So what’s my point?  I naturally use the stories I like as metaphors for my own life.  I know it sounds silly, but it really helps me understand and get through a crisis.  When I was in the hospital in my manic state I took this to an entirely new level. I seriously thought that I was three different characters: Harry Potter, Jesus and The Creator.  And, no, I don’t still believe it, so you can all calm yourselves down.  I had my very first acupuncture treatment today and the doctor (who is just lovely by the way) asked carefully, “you don’t still believe that, do you?”  Come on, people.  I know I’m out of it, but in the end I always know that it’s just a story.  I have never taken things THAT literally.  Sheesh.

Ok, so with the Harry Potter scenario I explained the brain inflammation to myself by believing that we are in the part of story where Voldemort is inside of his brain.  I spent a lot of time “casting” my keepers in the all the rest of the character roles.  Every person fit perfectly, of course, which did nothing but encourage and inflame this illusion.

With the Jesus metaphor, I believed that I was in my 2009th reincarnation and that each time I reappeared on Earth, my disciples would come back with me, but I would always have “amnesia” each time.  The disciples would have to do everything they can to “remind” me of who I am without drawing out too much attention.  They’ve never actually succeeded or if they had, I would always die before any good would happen… till now.  So when I wasn’t asking my friends if they would be cool with being Hermoine instead of Luna, I would ask them what disciple they were.  

The Creator metaphor came up much less, but I do remember asking one of my keepers if he was “The Trickster,” a character in a very well known aboriginal myth.  I do remember going up to the white board and erasing what was on it with my hand and then using the excess ink to draw on the wall.  I remember watching in my head as my hands moved with amazing precision and speed.  Closer to the end of my hospital stay, I asked one of my keepers, “Doesn’t it kinda look like ancient aboriginal drawings that you see in caves and on the sides of rocks?”  My keeper looked at the wall and said, “Yah, it kinda does.  That part kinda looks like a fire… and there’s the smoke.”  “Yah, and this over here looks like a buffalo.”  We said nothing more.  I know I don’t have to explain why.  I made a hand-drawn copy of what was on the wall in my notebook and have it sitting here beside me, hidden inside the rest of the papers and messages I collected from my time in the hospital.  I was looking through my Dad’s old Archaeology Magazines (archaeology was my first dream career as a kid) and I came across a magazine with bright red aboriginal drawings and symbols.  It looks almost identical to the one I drew in the hospital.  You better believe that I haven’t looked at that magazine since.  Listen, I find this all fascinating of course, but it is also extremely overwhelming and scary too.  I’m sure you can all understand, but don’t worry, I will eventually take it out and take a picture of it and post it here.  I know you must be dying of curiousity… or maybe you just want proof.  

Ok, that’s enough for tonight. Writing that last part has affected me more than I thought it would.  I feel a bit queasy from it.  I wasn’t going to share this with you all, with the entire internet world, but I think it’s important when attempting to solve a mystery as complex as the brain.  It is scarier than I thought it would be, to be honest.  I have no fear regarding my disease anymore.  I know I am going to get through this, but diving deep into the darkness of my brain, to re-experience the trauma of my time in the hospital, that every time I look at some creepy message I left myself that I don’t even remember writing in writing I don’t recognize, I have to catch my breath as my heart starts to race and I must brace myself against the wall to calm down.  When I first came home from the hospital, I took one of those pictures that they put in picture frames when you buy them from the store and cut out the smiling face of the person in it.  For some reason, I wrote the words “You have three months.  Use your time wisely,” on the curve of her cheek.  For a while, I thought that the message was prophecizing my death.  My mom brought me back down to Earth by reminding me that I have three months of chemo, so that’s probably what I meant.

And that message doesn’t even rate on the scale of scariness compared to some of the ones I wrote in the hospital.  Sigh.  Frodo, indeed.