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.

The Face vs. The Box of “Crazy”

Everyone has a skeleton in their closet.  Mine is a box.  A box full of “crazy.”  

When I first came home from the hospital, I wrote everything down, mostly because I was afraid I was going to forget what I was thinking a moment later.  I wrote every detail of my day in my symptom journal: Hours slept, mood ratings (self-assessment and my parents’), meals, snacks, attempts at naps, activities, etc.  I kept a small notebook in my purse to write down worthy “quote moments” literally seconds after the person said it, I’d even write out whole conversations like I was writing a play.  I’d write down everything in point-form, dozens of intricate puzzles that needed decoding, like the ones that Ben Affleck’s character left himself in the movie “Memento.”  I’d take pictures of signs and random things with my cell phone. This one day I took over 200 pictures with my digital camera of items around my house because I believed that everything in my childhood home had a “message” for me.  

Apparently I thought it was important to take this one...

Self-portrait (two weeks after release from hospital)

 

I even used my digital camera to record myself in a manic state… I even thought I was going to send it to Oprah.  I wrote post-it notes constantly and put them everywhere: in between books, on shelves, on my closet, on my walls, in my wallet.  I’d find things that I believed were “messages” and put them on display like trophies.  Eventually my room looked like… well, it looked crazy… like the person living in it was definitely CRAZY.

Two and a half weeks ago, I came home (after getting into a minor car accident, actually) and I put it all in a box.  All of it.  I ripped all the post-its off the wall, grabbed all my journals and writings  and creepy messages from during my time in the hospital and after, all the books and magazines I bought because I thought they  were “calling out to me,” I even put my keys in there.  I don’t know why I did the last thing… I’ve been confused about where they’ve been this whole time.  I just dumped it all in there, closed the flaps, closed my closet doors and sat there for hours, on the floor, leaning against my bed… staring at it… the skeleton in my closet.  My own personal box of “crazy.”  I decided that night that I wasn’t going to write everything down anymore.  I decided that it was time to trust that I can remember things on my own.  That was a scary decision.  I don’t think I truly believed that I could do it… I felt like I had lost so much of what had happened to me already…

The other night I decided it was time to face the box of crazy.  It’s the only way I am going to get through this.  I need to face reality.  I can’t keep pretending that I’m different characters in my favourite stories, battling imaginary devils and demons. This is real life.  This is MY LIFE.  I need to get my life back.  The things in that box represent all the illusions I have to wade through, all the tricks and booby traps of my brain.  I need to know them, I need to decode them, I need to understand them.  I can’t just put them away like they don’t exist.  I opened the closet and for a good twenty minutes it was just me and the box.  Standoff (cue tumbleweed), both of us unmoving, just waiting, staring, wondering… will she do it?  Suddenly, I leapt forward and emptied it as quickly as I had filled it, ripping it open like I’d rip off a band-aid, eyes half closed from the effort… but I did it.  I emptied it.  I laid out all the brain books and magazines and clippings and info on Lupus on my desk, ready for reading.  I put all the books that “told me to buy them” boldly on the shelves, stored all the creepy messages in plastic inserts ready for further investigation, I put my journals on my bedside table.  Ok fine, I did take a small break in between.  I had to.  Oh, I guess I didn’t mention that while I was doing this, I almost gave myself a panic attack.  My heart was beating so fast and every time I would bring out a new item it would quicken and I would sweat and I couldn’t breathe.  It was all the craziness, I guess.  Each item was crazier than the next, more surprising and more disturbing than the next… and all of it, ALL OF IT, was ME.  I did that.  I bought that.  I thought that.  Yah.  I needed a little break.  They weren’t kidding when they said that facing the truth, facing yourself is the hardest thing you will ever do.  I just never thought I’d be this scary looking.

The box is still in the closet, but it’s not entirely empty.  When I filled it with craziness that night two and a half weeks ago, it was already storing framed pictures of my past life on the stage; my very first headshot, me getting married as Tzeitel in “Fiddler on the Roof” in Grade 12, me on stage during my fourth year honours play during my last year of university.  Is this the hope that Pandora kept safe in her box?  Perhaps.  We need to get Elena “uncrazy” first.

I have demanded that I see a mental health professional as soon as possible.  I have been asking for one ever since I left the hospital.  I’ve been playing phone tag with the doctor’s office receptionist, but the wheels are in motion.  There’s the hope, I think.  I can’t do this all by myself anymore.  I am a brave warrior woman, it is true, but the brain is dark and deceptive terrain.   It’s time to get myself a guide.

Here’s a quick update on the physical state of your favourite lab rat:

I’ve had 15 vials of blood taken in the last week.  Blood test results look good.  White blood cell count normal after second cycle of chemo, hemoglobin a little low (but apparently that is normal for a lupie so no real concern), kidneys doing a-ok despite cocktail of daily drugs (they almost shut down two years ago, so I marvel at their steely magnificence!).  Steroid dose is still very high, but is down from 60 mg a day to 50 mg (the goal is to go down to 5 mg, I think) and moon face continues to expand.  Thrush (mouth fungus) comes and goes, but still has a grody presence.  Continued hair loss.  Analyzed my forehead and discovered there is new hair growth there, apparently another side effect of the steroids.  Sigh.  Forehead fuzz.  Great.  Found two blood clots in two veins in my left hand.  The internet says it is “lupus anticoagulant,” which isn’t too much of a big deal except that it hurts (got more blood drawn for futher investigation) but it will increase my chances of miscarriage… ya know, if the chemo doesn’t fry my ovaries first.  I’ve been put on birth control again to try to protect them.  I stopped taking it two years ago after my anaphylactic shock because I wanted to cut down on the meds in my body and for the fact that increased levels of estrogen is proven to increase lupus flares in women.  I was not happy to hear that I had to take them again, especially since I was so excited to tell her that I actually got my period after not having it for three months (most likely from not eating for two months prior to my hospital stay), but the look of concern and seriousness in Dr. H’s face swayed me in the end.  “Actually, I’d prefer that your ovaries weren’t active right now.  We need to put them to sleep.”  She was like a warrior… a warrior for my ovaries.  I like that.  It’s nice to have one.  Tomorrow I have another appointment at the “lab” where I had my chemo. I am not sure what they are going to do to me in that one – I only just gave blood again today.  My third cycle of chemo is on the 15th and then I have a follow-up appointment for my eyes to see if the vision is improving and acupuncture and hopefully future appointments with a psychologist … well, I told my mom we have too many appointments and that we need a vacation from this weird “vacation” that I’m having.  Hawaii, anyone?

Am I a human dreaming about being a butterfly or a butterfly dreaming about being a human? – Chinese Proverb

I am very “manic” today.  I would call it “chipper” but the 10 year old Elena didn’t show up today.  Nope.  Just the cranky, darkly explosive Elena.  She also cries a lot.  You wouldn’t like her.  I know I don’t.  It’s because I felt nauseous all day today, I guess.  I just didn’t have any energy in the reserves to hold her back.  Don’t worry, no puke, but I couldn’t eat very much either.  It was bringing back memories of the two months before I was admitted to the hospital for this thing.  Did I mention I lost a total of 21 pounds by the end of my hospital stay?  

Anyway, I was so tired today that I think I must have snapped at my beautiful, concerned parents about 50 times.  This one time I heard the footsteps of my mom in the hallway and I yelled out “I’m okay!!”  I scared her half to death.  She was probably just on her way to her room and not to mine at all.  Sigh.  I know I need to be home with them right now, but God, I wish that I still had my apartment on times like this; a place where I can hide away and protect my parents from being yelled at for nothing.  I won’t even go into my feelings about being a 28 year old woman living with her parents again, her newly retired parents who should be enjoying their lives.  

I try my best to be quiet on days like these.  I try to keep to myself, read, email.  I am finding that I need to do less emailing.  When I am feeling particularly manic or “hypercreative,” I end up writing long, intense emails to people.  Mostly to my favourite people, but sometimes to those I don’t know very well at all.  I think the latter is where I get myself in trouble and where I end up sounding as crazy as I feel these days.  Now these emails are always full of positive things and expressions of fondness and love, but I am sure the intensity of these emails are hard to receive, awkward even, for some and surely exhausting to interpret.  Great.  Just another way that I am hurting those around me.

When I say “crazy” I don’t mean to insult those who actually have bipolar hypermania.  If I have learned anything in this whole drama, it’s that mental illness is a powerful and horrible thing to have to live through, so much harder than what I have gone through physically with Lupus.  I only have to deal with the physical pain.  Ok, yes, all those with chronic illness also suffer through emotional trauma, but nothing like this.  The stigma, the guilt, the fear that comes out of having a disease in which you cannot control what you say or do, to never know what is to come out of you whether it be tears or screams or threats or joy.  To not know if you could potentially say or do something that would ruin the lives of those you hold dearest, to think that there is a possibility that you could physically harm them… to live with that in addition to knowing that the majority of the population think that you are doing these things on purpose.  That you’re not “trying hard enough” to stop doing and saying these things.  I have found myself thinking sadly of the mentally ill man who beheaded the young man on that Greyhound Bus not too long ago and of the young man’s mother.  How can anyone expect her to understand that the man did not want to do that.  That he is ill, that he was probably there watching inside his head, watching in horror as he did that horrible thing, helpless to do anything about it?  

All my days in the hospital and even now I am standing there too, in my mind, watching myself, trapped.  An outer body experience I guess you could call it, but I definitely feel like I’m still inside my head.  I watched everything, EVERYTHING, watched myself make an utter fool of myself, singing and talking nonstop and kicking walls and screaming and throwing things and threatening… I watched everything, everything except the moments when I left entirely.  Yes, there are whole days that I don’t remember because I literally left my body.  I guess I died.  Well, isn’t that what you call it when your conscious self leaves, when the only thing left is your outer shell?  The only difference is that she was still talking and screaming and throwing things.  But that wasn’t me.  I know it wasn’t.  Because I wasn’t there.  Now, if that isn’t the scariest thought ever, I don’t know what is.  But it wasn’t a thought people – it happened.

I came back of course, somehow.  I’d like to think it was the love of those around me that awakened me.  It sounds more beautiful that way.  The doctor folk will probably want to say that it was probably the mix of drugs that did it or something.  My brother says it was like I was on LSD, that I was on some psychedelic trip.  Perhaps I was.  At the current moment, I don’t really care.  What happened next was that I started to figure out how to control the different Elenas that sprung out of me from moment to moment.  It was slow, too slow for my liking, so I did have my share of outbursts, but I quickly learned that those outbursts would not get me out of that hospital room.  I forced myself to calm down, to be strategic in controlling my symptoms.  I figured out that one of my most obvious symptoms was talking nonstop, so I learned to be quiet and listen.  Eventually the doctors started to feel better because they were noticing that my behaviour was improving.  They started letting me out of my isolation room and eventually they released me, but they did it because they thought that the steroids were improving the inflammation in the brain.  When they decided to release me they hadn’t even given me the first dose of chemo yet.  And as I have established in my previous posts, my bipolar symptoms are largely unchanged at the moment because the chemo hasn’t kicked in yet.  They say it takes 6 – 12 weeks.  We’re on week four and a half, I think.  And yes, the steroids have been fabulous in eradicating my arthritic and costochondritis symptoms and giving me my appetite back.  I can’t even remember feeling this pain free for this long, but the memory loss, the bipolar mania symptoms, the OCD, the vision loss in my left eye, the brain “fuzz” sensation I feel around my head, the cognitive blips… they are still there.  And they were there when they sent me home.  I fooled them into thinking I was better.  I had to.  I knew I would never get better in there.  And they would never take my word for it alone.  They needed proof before they released me and through their scientific reasoning they must have reasoned that the steroids were finally doing a good job on the whole brain thing, or starting to anyway.  Or I could be wrong, who knows.  Maybe they could feel that I could deal with this at home now.  Maybe they believed in me instead. I think I’d like to choose that ending.  Did I mention that the steroids, in addition to making you an insomniac and a moon-faced freak, it also aggravates and brings out bipolar-like symptoms.  I think you’re starting to see that, I’ve got a lot of things working against me here.  And it’s not even the drugs that are the worst of it, it’s that essentially, I am in a battle with myself.  Constantly in battle with these distorted versions of myself.  I don’t even know which one is real anymore.  I don’t even know if a “normal” Elena exists.  Maybe she didn’t come back at all.

I had a moment of fear today that I am actually bipolar.  There is nothing in existence right now that can prove without a doubt that I have inflammation in my brain.  The prospect of knowing that I possess the actual mental illness, that I was not the lucky one who only has to deal with this for a short time, it was paralyzing.  And I still sit here paralyzed.  Paralyzed at the thought of it.  

I don’t think I’m that strong.