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.

Dear Dr. H

I found out today that I am 5’2”.  My driver’s license says 5’3”.  Well, at least that mystery is solved.

I have not puked and I don’t think I will.  Yah, yah, I know.  Now I feel like a nob.  A silly little nob.   I get all worked up and then everything turns out fine.  That happens to me a lot… but that’s okay.  I think it’s good for me to be reminded that I am a silly little nob.  It keeps me grounded.

Ok, so, Lupus Cerebritis.  I know you want to know more.  But first I must address my last sentence in my last post regarding the fact that “the lab rat is prepped and the trials are about to begin.”  A concerned relative emailed me to ask if this meant I am undergoing experimental drug therapies or trials.  My apologies, my friends, my love of metaphors and melodrama took me over.  I just wanted the ending to have impact, ya know?  I am following doctor’s orders to the letter and have no plans to do any experimenting of my own beyond learning to play chess to improve my cognition.  Although I must admit that if offered a chance to have my head cut open in order to actually SEE this invisible inflammation in my brain I would absolutely take it.  The great thing about inflammation is that humans have not yet discovered a way to detect it without cutting you open, so we all have to go on blind faith (and scientific “fact”) that it’s actually there.  And believe me, I know that it’s there, because my symptoms are incapable of lying.  Literally.  I imagine myself lying on the table, eyes open, like in that old commercial about seizures (sorry, my dear Americans and younger Canadians, you won’t understand this one), listening as the doctor pokes and prods certain areas of the brain.  I don’t think I’ll be smelling burnt toast though.  The armpits of those closest to me are surely sweating at the moment because they know that I am dead serious.  Don’t worry James, no one has asked me… yet.  

I started to write a letter to my lovely rheumatologist (we’ll call her Dr. H), while the drip drip of the chemo seeped into my veins.  I wasn’t sure if I would see her you see, and I had some things I wanted to say.  She did end up coming and I said it all in person (crying intermittently, of course), so the letter has stayed in my hands.  This is a most convenient thing, since the letter explains much of what I was going post here.  I am sure she would not mind if I shared it with you.  I don’t know her very well, but I have feeling that she wouldn’t.  She is quite lovely that way.

Dear Dr. H,

Firstly I must thank you for the sincerity and care in which you do your job.  For the first time since my diagnosis, I feel like I am getting good care by someone who truly cares about my well-being.  Thank you does not do justice to the feelings I have in my heart.

As you know, I have completed my 2nd cycle of chemo today as part of my treatment in hopefully eradicating this thing called Lupus Cerebritis.  You will not be surprised to know that the chemo from my 1st cycle has not yet had effect on the bipolar-like symptoms that has enslaved me and yes, I am still a prisoner now as I was when you watched me scream and run in horror from my mother’s touch and into the hall where you all stood over me in shock.  The only difference is that I have learned to control it.  At times I do better than others, but the strength and velocity of the emotions that want to spring out of me is the same.  It is hard work, I must admit, especially in light of the fact that the steroids don’t let me sleep very much these days, so the energy I have to draw upon is usually small and very quickly diminishes.  

I have been observing myself very carefully these last few weeks and I think that I have unravelled some of the mystery of where and how this invisible inflammation is affecting me.  My cognitive function has thankfully improved – I am sure you remember me telling you that I was having trouble communicating both orally and written.  I know you do not know me personally right now, but if you did you would know that my communication skills are my greatest strength and gives me the most joy, for I am a performer and storyteller to the very core of my being.  The fact that my words were stalling as I spoke, that I would find myself writing the wrong word, that reading aloud I would do the same thing… well, you might as well say that I could not speak nor laugh again.  I did some research and found that most people  who have suffered through Lupus Cerebritis never fully regain their cognitive function.  For me that is not an option, so I have been doing all I can to exercise that part of my brain:  Writing, reading (silently and out loud), learning language, puzzles, singing, everything.  And I am happy to report that my writing and reading skills are now back up to par, if not more than they were before.  Orally I am fine too, but it does take much effort to control myself in my moments of “chipperness” (that is what I call it when the talkative, 10 year old Elena comes out – you must remember her quite clearly from my many days in the hospital).  Actually, it’s pretty exhausting trying to hold back the tsunami of words and stories that she wants to tell.  Sigh.  Well, I guess that makes sense… I am a storyteller afterall.

In the hospital I was forgetting the people closest to me, something that I could never have perceived as possible, but the brain is a truly powerful and formidable enemy when it chooses to be.  I believe, without a doubt, that if I were not in my childhood home, surrounded by pictures and reminders of those most important to me, I would not know who they are.  I flip through pictures of my short time living in Toronto; snapshots of moments of laughter and joy with people who’s names I only know because I conscientiously scribbled their first names on the back more than 8 years ago.  I can’t explain to you the profound sadness this gives me, to forget the important characters of my life, the people who made me who I am.  And I know that memory itself can be a funny thing and that we sometimes choose to forget or choose to recreate our memories.  I know that naturally I am a forgetful creature whose focus and enjoyment of the current moment results in the loss of the joyous moment that had just passed before.  I know this, but I also (oh, I just had a little written communication blip with that last word) know that when presented with my loved ones in touchable flesh and blood, when I am able to stand and gaze into their eyes and feel the familiarity of their gaze, I have never forgotten them.  This is why I know without a doubt that the chemo is not working that this is the work of that invisible, undetectable inflammation that we have no choice but to believe that it is there.  I am currently reading up on this mystery called memory and it will be the next thing that I will be working on.  You of course understand why I had to deal with the cognition stuff first.

Now, I haven’t yet had the energy to really look into the part of the brain that causes bipolar hypermania, but I am sure that you, nor I, nor anyone else who participated in my care at the hospital or my poor parents who watch me daily with sad eyes, can deny that whatever part of the brain that may be, it is most definitely inflammed.  Inflammed and enraged, I’d say.   I think I just spelled that wrong.  One “m,” right?  I’ve also been displaying signs of Obsessive Compulsive Disorder from time to time, but I’ve been able to keep that in check quite easily most of the time.  The other times I just sit back and enjoy the tidiness that does not come to me naturally.


Then she walked in the door.  The happiness I felt in my heart in seeing her swelled so intensely that it took all my strength not to jump up and hug her.  Good thing I kept things in check… I would have ripped my IV right out of my arm.

I think that is enough for tonight, my dears.  Although there is no pukage, I am feeling very fatigued and I still have to respond to the lovely messages that have littered my inboxes from friends, family and beautiful strangers alike.  Next post we will discuss some of the fascinating things that happened during my hospital stay, as well as my treatment plan and perhaps we will even get to the visual disturbances that are occurring as well.  Till then, sleep tight.  All is well.