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.

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2 thoughts on “Am I a human dreaming about being a butterfly or a butterfly dreaming about being a human? – Chinese Proverb

  1. Oh, lenniface. I’m going to a big awful party alone tonight because I can’t chicken out with you writing this blog. What’s a little residual social anxiety, when my dear friend is using the word paralyzed with such brilliant emphasis.

    I could go academic or ironic with this comment or whip out some sweet psycho-babble just for giggles, but I’m choosing a third road: oversimplification. Brains are dumb. Let’s both keep on truckin’, shall we? Que Sera and whatnot. Just breathe.

    And, yes, you are that strong. Silly face.

  2. Oh, my dear, sweet wonderful Tala. You’re right, brains are dumb. So let’s make ours smarter, shall we? I am so glad you are on this journey with me and that you are one of my keepers, that fellowship, that iron ring circle that keeps me strong and makes me laugh. I don’t really like that I am Frodo in this metaphor, a) because Elijah Wood annoys me a little bit and b) because my favourite character isn’t Aragorn at all, but really Sam, since he’s the real hero after all. But I guess that makes sense because my keepers are Sam and isn’t it you guys that carry me up the mountain at the end? Yes, it all fits brilliantly, I must admit, but I have a feeling that my writing skills have nothing to do with it.

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