Rinse and Repeat?

Shivering, I grab the handwritten receipt with a mitted claw.  The chill of the morning wind blasts against the van’s rusted passenger side door, flung open and to my right.  I reach over the Mickey Mouse cut-outs sprawled across the seat, clasping an outstretched hand to seal the deal.  Running back to my car, I let out a giggle, imagining Mickey’s beady eyes staring after me.  There must be some logical explanation  for the Mickey clones held hostage in my new landlord’s vehicle, I thought.  I grip my damage deposit receipt between my hand and the steering wheel, hardly believing that the tiny apartment ad I saw less than 36 hours ago has now materialized into my new home.

That was this past Friday, during an early morning “drive-thru” transaction on a quiet street, mere blocks away from two of my previous apartments.  On two separate occasions, exactly two years apart, I found myself draped in my green hospital gown cape, transported back in time and into the loving care of my parents.  And now, here we are again, back to the part where there’s a new hobbit hole for the second phase of healing. You know, the part that actually involves cooking and cleaning for yourself?  The deja vu feeling is hard to ignore, the vicious cycles of the past hang low around my head.  How long will you last this time, my dear?

The very same day I looked at the apartment, I went with my sister to deliver cookies to her co-workers.  The cookie delivery was going to the scene of my “hospital-cape-wearing-crime.”  I hadn’t been there since.  I walked past the Emergency Entrance, avoiding eye contact with it’s wide automatic doors as the sweet smell of freshly baked cookies gently wafted up my nose.  Wisely, my sister chose to enter through another door nearby.  I silently thanked her.  There are some doorways you don’t need to go back into.

It was hard to write this today.  It’s been hard to write about my “lupusface” at all, as you can tell from a longer than usual gap between this post and the last.  I feel like my recent posts  are veering off from the original “Lupus Awareness” intent of the blog  and even as a personal exercise, I’m not sure if I am discovering anything new.  Much like my life cycles, I feel like I just repeat the same thing over and over again.

There seems to be a lot of moving going on, a lot of shifting, like those small square puzzles with tiles that we used to slide around with chubby, childish fingers.  I move into my new, less duty-intensive position at work in 2 months.  It’s bitter-sweet, laced with relief and sadness.  Who knew working less would be so hard?  In the more immediate future, my move into my new hobbit hole happens in a week.  I figure the best thing I can do is move in one box at a time.

Home, Heart, Drum

His brown fingers chased the edges of the drum as he spoke, tracing wide circles across the taught landscape of his instrument.  Peering through gaps and wide spaces over shoulders, between arms and waists, I caught sight of his wife waiting patiently by his side, her long, black braid resting on the curve of her back.

“The beat of the drum calls to us because it reminds us of the sounds and comforts of our mother’s belly.  The drum beat is our mother’s heartbeat and it calls us home.”  He started to sing then, soft then loud, switching back and forth with the kind of ease that forces your eyes to close in appreciation.  In the moments when he let his fingers pause and hang above the drum, I could hear my own heartbeat, loud and clear in my body.  I’m not sure why, but when you’re on a lot of medication, your heartbeat is louder.  Surround sound.  For the first few months out the hospital, when my doses were much higher than now, it would pulse loudly in my ear, comforting me on one hand, but it was also incessant and fast.  It rattled my nerves and kept me awake. 

His wife sang next, in Cree I think, and then in English.  Every once and a while they would look at each other and break out in a moment of spontaneous grinning before focusing out once again, him with his drum and she with her beautiful voice:

And here I am, once again…”   

That was last night, during the opening ceremony of a session I attended for work.  Today my heart still beats for attention, cackling in my ear, not letting me forget how easily it could stop… any second now, if it really wanted to.  Sometimes, before bed, I get caught up in the wild fear connected to the notion of my own mortality.  Those kinds of thoughts don’t scare me the way they used to.  Dark memories tend to scare me more.

Today the sky is bright with winter sunshine.  Feathery gusts of snow drift off the trees and kiss my not-as-much-of-a-moon-face.  The gentle breeze tousles the freshly grown layers of my hair.  The air is fresh, clear in my lungs.  I’m tired, but my breath goes deep, unhindered.  It’s a good day.  A good day to be home.

***Some of you may have noticed that I have replaced/erased some photos that I had posted with my blog posts.  I have added a “page” to the top right hand corner of my site called “About the photos on this blog.”  Please go there for a full explanation.  

Flight of the Lupus Face

My apologies for my last post.  The last part was written with the intention of being cryptic, which I realize is completely ridiculous to do on a blog that was created to reveal the realities of one person’s Lupus Life.  I made the decision to continue this blog and I’m pretty sure that should also mean that I continue it with the same honestly and candor in which it was started, even if it is more difficult for me now without manic energy to assist me.

My body’s “zing” reminder that “I’m not over it, baby,” is in reference to a ridiculous event that involved a particularly ridiculous Elena and a very irrational “flight” response.  As most of you know, the “fight or flight response” is our body’s primitive, automatic, inborn response that prepares the body to “fight” or “flee” from perceived attack, harm or threat to our survival.  This perceived threat usually involves the possibility of being eaten or stabbed or, if you’re very unfortunate, both.  My perceived threat?  The back of someone’s head.  Now, if the head was just the head with no body attached then maybe I could justify the way I froze mid-stride at the sight of it, but sadly that was not the case.  I stood there frozen in time, my mouth slightly open as I felt my stomach surge against the back of my throat.  I was still for only a few seconds.  I wish I could say that there was a mental process that happened in those few seconds in which I calmly presented myself the option of approaching this human head, but it was my body that did the talking… or more specifically, the brisk walking. If there was any situation in which I could say that “I bolted,” this is truly it.  I bolted like I have never bolted before.  Now I know that the back of someone’s head isn’t as threatening as it would be turned around and looking at you, but it was the head of someone who experienced some of my most embarrassing moments of psychosis and well, it left me literally running scared.  I guess it was more like “face or flight” then “fight or flight.”  Seeing that person’s face would have been like facing all that stuff all over again.  I couldn’t face it.  I didn’t want to face it.  That would have been all well and good if I just bolted and left and that’s that, but about four paces into my escape I realized that the important and time-sensitive items I had come to get were in the very same place that person was standing.  Skulking around in a way that made me cringe while I was doing it, I had to peer around corners and objects until that person left.  I came away from the experience with sweaty armpits and the strong urge to bang my head against the wall… which I think I actually ended up doing.  The embarrassment and the possibility that I was seen by this person wasn’t the worst part of it, it was the disappointment I felt that stung the most.  I thought I had let that go.  I thought that I was over it.  I could almost hear my body laughing in the background, “sorry honey, it’s not going to be that easy.”

In respect to my “survival,” I know that it would have served me better if my body had chosen to “fight” or “face” or whatever you want to call it, but for now I will have to be at peace with where I am at right now.  Although it would be nice if “where I am right now” didn’t involve being a creepy woman who hides from other people in public places, but hey, at least I’m actually going out in public now.

You’d be happy to know that I had a different kind of flight tonight, one that carried me home after spending four days in the middle of the Canadian Rockies.  These last few days have been a pretty big deal for me, it was my first fully independent venture since my hospitalization in August.  I chose to reveal my “Lupus Face” to the people I met there and in the process I started seeing all the other parts of me that has nothing to do with Lupus; the girl who screams happily as she almost runs into the badminton net after a spectacular miss with her racket, the girl who can travel alone, the girl who is willing to go somewhere she’s never been to spend four days with people she’s never met.  I forgot about her.

I guess you could say I did considerably better on this most recent flight then my last.  I didn’t hide.  I’m pretty sure I wasn’t creepy.  It’s all about small victories, my friends and tonight I am celebrating without my Lupus adjective.

No Lies, No Filter, No Boundaries, No Fear

Imagine this:  You have been taken hostage.  You are put in a room with the people you are closest to;  your family, your friends, maybe even your boss and co-workers.  You are forced to ingest a liquid, a truth serum, if you will.  This liquid immediately destroys your natural filter, the thing that stops you from saying the thoughts that are going through your brain.  One by one, your captors bring your family, friends and co-workers towards you.  They sit back and watch. Suddenly, the words spill out of you, swift and sharp, each thought spoken out loud at the very moment it is born.  Truths dribble down your chin onto your chest, into their ears, all over the floor.  You are incapable of lying.  You have no boundaries, no concept of personal space.  Your captors put strangers in front of you and you stand inches from their face, touching them as you talk talk talk.  You have no fear.  You dance and sing.  For the first time in your life, you are truly genuine.  Tact goes out the window.  You tell strangers they are fat or that they are “hot” or that they should go to the gym.  You bring up uncomfortable, traumatic past events that haven’t been spoken of since.  Secrets are revealed, unloaded, offered up willingly, purposefully… everyone knows everything.

What if that was you?  How many friends would you have lost?  How many relationships would have been ruined?  What would you have said?  

Well, that was me for 11 days in the hospital.  The truth serum was the brain tissue inflammation mixed with “evil p”  (a.k.a. prednisone (steroids)).  The result came in the form of bipolar hypermania symptoms.  People with bipolar disorder go through extreme highs and lows.  Hypermania refers to the mania when it is very extreme – when the patient is in a highly frantic and euphoric state. Usually, when a patient is in a manic state, they talk excessively and at high speed.  They flit from one subject to another and become very easily distracted. I was told that one day my team of “white coats” came by on their rounds to see me.  I was writing on the white board in my hospital room.  I turned as they entered and started talking nonstop about nothing in particular.  Apparently, they just stood there and listened for a few minutes, looked at each other and then without a word left the room.  I think I vaguely remember that, but the way I imagine it in my mind right now makes me laugh out loud. In extreme cases, someone with bipolar hypermania may experience delusions and hallucinations or act violently. They may also become confused and disoriented.  I briefly touched upon my “Harry Potter/Jesus/Creator Delusion” and you already know that I had given death threats to those closest to me, even throwing things at their heads.  At one point, I sincerely believed that my mother was going to kill me.  I couldn’t remember my oldest friend or my sister or my boyfriend of almost 6 years.  I was very confused and disoriented, indeed.

Some other interesting things happened during my time in the hospital.  The language centre in my brain was quite active, I was speaking Tagalog and French better than I ever had.  My ability to absorb information and learn was quicker, smoother, almost effortless.  For some reason I was extremely flexible despite all the inflammation running rampant in all areas of my body.  When I bent over to touch my toes, my palms touched the floor.  I have never been able to reach past my ankles.  I sang a lot at the hospital.  My favourite Disney songs, Michael Jackson, songs from Sound of Music and Annie.  I took requests.  My master keeper, who is a trained singer and the most honest and critical when it comes to anything vocal said it was the best he had ever heard me sing.  Oh, and we can’t forget all the creepy messages I wrote myself.  I was writing constantly.  I was writing when I wasn’t writing.  My mind was always running, sprinting, falling over itself.  It wouldn’t stop.  It wouldn’t even let me sleep.  When sifting through these messages, I see that I wrote “Let me out!” several times in very strange and distinct writing.  One of my keepers, who has years of experience working in the mental health field, says it was my way of figuring things out, that I was doing the best I could to understand how to take control of my mind again.   Fascinating, isn’t it?  Apparently, my parents bought a tape recorder in the second week of my hospital stay.  Yes, it is true.  The tapes patiently wait for me somewhere in this house, they wait for the time when I am ready to hear them.  My master keeper told me that he recorded a few hours of a night that he calls “the most traumatic night of his life.”  I don’t remember this night at all.  I wonder what “she” sounds like… the “she” that was left behind when I was gone.  I will find out one day, but not today.  Definitely not today. 

As well as manic periods, someone with bipolar hypermania may go into a severe depressive state. This is characterized by fatigue, despondency, and extreme sadness. When the depression is at its most severe, the patient may become silent and motionless. One of the real risks during this stage is that of suicide.  Manic and depressive moods often arise without warning and last for some time- even weeks or months if no treatment is given. Living with someone in either the manic or depressive stage is not easy although they are usually not dangerous to others. However, they may become a danger to themselves if not treated.  During my time in the hospital I think I was more “chipper” than down, although most of the times I don’t remember was when I was violent or on a low, so I could be wrong in saying this.  I am experiencing the “lows” more now that I am at home recovering.  Nothing serious.  I’m keeping things in check.  I haven’t been violent or thrown anything or uttered death threats since my release.  There have been some outbursts, yelling, screaming, crying, but it never escalates into anything physical.  Thank God for that.  

This week is mental health awareness week.  I have been thinking a lot about the millions of people who struggle with mental health issues everyday… even more than usual.  I was on facebook the other day and I caught some comments that a few nurses were writing about a “crazy drugged up patient” who had made a silly or strange comment or command to them.  I know that the nurses didn’t mean anything by it and that they care deeply about their patients and that strange comments from high patients naturally induce some kind of reaction from tired, overworked health care workers, but I had this pang go through my heart when I read it.  That was me.  That was totally me, talking a million miles a minute about things that didn’t make sense.  I am that crazy patient.  That’s how all the nurses and doctors will remember me.  That’s who Elena is to them.  I know I shouldn’t care… but, wow, I really do.  That wasn’t me, people.  And that “crazy, drugged up patient” is actually a really beautiful, rational, intelligent person who is really lovely to talk to.  Sigh.

So, I guess you want to know how many friends I lost from my non-filtered adventures in wonderland?  None.  Yes, I know, I am one lucky girl.  I am lucky that this happened at a point in my life where I have ensured that the people close to me are the people I genuinely love and care about.  I am lucky I had no real dark secrets, just “embarassing” things I guess, but now that I have released them out there, they really weren’t a big deal at all.  I mostly just told my family and friends how much I love them and when I came home from the hospital I even wrote emails to people who weren’t really my friends telling them that I loved them too!  Basically, I am just one big love machine.  I have to tell you that it feels really good to tell the truth, to have no secrets.  It’s liberating.  My filter is back, although I do struggle during my manic episodes to keep it in check.  I do slip up from time to time, even now when I finally feel like the mania is decreasing, but I can tell you that even though I have somewhat of a filter, I find that I still can’t lie.  I can’t do it.  I don’t know if I will ever be able to again.  I’m okay with that… actually, I am more than okay with that.  It sounds like a really good way to live.

Now, you all know that I am a theatre person.  I have told you that several times.  Having bipolar hypermania symptoms plus being a theatre person plus being a gemini plus being a person who naturally tends to have highs and lows anyway is absolutely a lethal combination.  It’s quite laughable, actually.  My dear brother says that my blog is very melodramatic.  Well, yes, I dare say it is, but I hope you all know that everything I say here is sincere, that it is the truth… my truth.  Yes, I use fanciful metaphors using epic story lines and comic books and I start my blogs with imaginary hostage scenarios, but I do that because I am a writer and I love stories and metaphors, high stakes and drama… and I also don’t want you to get bored.  Let’s be honest here, people, my situation isn’t the cheeriest one out there, so if a little melodrama and theatre makes you laugh or smile or helps you relate to what I am writing here, than why not? I just want you to know that beneath all that, all the frills and jokes and metaphorical wonderment, it is all real, that underneath all the mania, the euphoria and the lows, I am real.  I am here.  This is me.  No lie.