Vision: A Window into the World?


While I was in the hospital, huge, blue blobs of light would pulsate around the edges of my vision as though a lava lamp had been cracked open and carefully drizzled on the outside of my eyeballs.  They were like morbidly obese slugs oozing in and out, always accentuated by darkness, leaving their illuminated trail over everything my hungry, manic eyes tried to take in.  This was not an enjoyable phenomenon – I thought I was going blind!  The blue slugs have thankfully crawled back to wherever they came from, but I found out later that I have lost some vision in my left eye.  My recent opthamologist appointment confirmed that three months after my release from hospital, my left eye has not yet regained the vision it had lost.  I have been told that my lovely little eyeball is perfectly okay, it’s my cantankerous brain that refuses to output the image of appropriate quality.  This news came the same day I would once again, venture into the neuroscience frontier.  You will not be surprised to know that of all the vast neuroscience terrain I could have landed on that evening, I ended up on the ironic plane of a session entitled:  “Vision: A Window into the World?”

The PhD steering the ship that night brought up the concept of “inattentional blindness.”  Is attention necessary for perception?  She proceeded to put on a video, instructing half the class to pay attention to the individuals in white and the other half to pay attention to the individuals in black.   Each group was to count how many times the ball was passed to an individual of their assigned colour.  At the end of the video, the PhD asked how many people noticed the man dressed as a gorilla that walked through the scene.  About less than half put their hands up.  She also brought up this experiment:  A student on a busy campus is selected randomly and is approached by an individual involved with the experiment.  The individual asks the student for directions.  As the student explains, two other individuals carry a door directly past them, pausing only to let the individual talking to the student switch places with another individual who opens the door and walks through.  According to the experiment, the student, preoccupied with accurately describing right and left turns, fails to notice the switch.  The PhD continued onwards, describing how depending on what our brains are “used to” or terms as “normal” can affect the way we perceive our memories.  A man sitting in front of me laughed out loud as he realized that his brain had manipulated his memory of getting out of a car while on a trip to the United Kingdom.  In his memory, he would always envision himself (the driver) stepping out of the left side of the car, when, of course, he would have stepped out of the right.  At the end of the night, the PhD approached the white board which prominently displayed the question of the night:  Vision: A Window into the World?  She took her marker and crossed out the last word, replacing it with another:  Brain.

Perhaps it is disturbing to realize that what we see is simply the result of how our brain decides (or decides not to) function.  I just finished a book by Dr. Jill Bolte Taylor, a brilliant neuroscientist who suffered a severe stroke in the left hemisphere of her brain.  Her vision was affected in that she could not decipher the physical boundaries of objects, including her own body.  As a result, she felt as though she was a fluid, at one with the universe, a pulsing life force connected to every other being and object.  She reminds her readers that everything on Earth is fluid, made up of billions of tiny molecules, always in constant motion.  It is our left brain that gives us the ability to see physical boundaries, to see ourselves as a separate “self,” to make material things look solid and stationary.

When I got out of the hospital, the world looked different.  My senses were heightened to the millionth degree, perhaps from all the drugs, perhaps it was my brain, I’m not sure.  I could still see the physical boundaries of my body, of the trees, but I did not feel a physical boundary between my body and the trees.  I looked at a tree and I felt at “one” with it.  The tree and I were the same.  I looked at other people and felt the same way.  It wasn’t an intellectual thought, it was something I felt physiologically deep inside my “being,” which I inherently knew was not the container I called my body.

Gurus and yogi masters from around the world have claimed that this is the correct way to perceive the world around you.  They say that this feeling of interconnectedness with the universe is the path to enlightenment.  I am not so egotistical or stupid to say that I am enlightened.  I do think, however, that because of the condition my brain was in, I was lucky enough to take a glimpse into that way of perceiving the world.  That feeling of interconnectedness has faded, of course, but the memory of it feels imprinted on my mind and spirit.  I do understand more than ever the kind of discipline and commitment it takes to feel that interconnectedness at all times, but I do think it is possible to have this feeling without a medical catastrophe.  Dr. Taylor agrees and says that you don’t have to have a stroke, or in my case, have Lupus Cerebritis in order to experience the euphoric nirvana that comes with having a dominant right brain.  She says that deep inner peace comes from “tending the garden of your mind,” by making the conscious choice a million times a day to silence the negative “storyteller” of your left brain.  Dr. Taylor’s stroke rendered her motor and communication skills to that of an infant and it took 8 years before she could say with confidence that she was “recovered.”  She is living proof of the miraculous resilience and power of the human brain and body when given the time and patient care that it needs.

So, what is my point? I guess it comes down to the fact that we (our eyeballs, our brains, our hearts) see what we want to see.  Largely, people with Lupus (or any chronic illness) see their bodies as weak and pathetic; a heavy, dirty, dysfunctional anchor that won’t pull up, dragging at our sides, making our lives miserable.  I can’t count how many times I’ve said in my head, “stupid body!” or pleaded angrily, “please just give me a break!”  Dr. Taylor takes a completely different stance.  Everyday she is in awe of the amazing genius of her victorious brain and body that every night she thanks her billions of cells for another great day:  “You go, girls!” 

Last night, immediately after I closed Dr. Taylor’s beautiful memoir, I stood in front of my mirror and for the very first time, I thanked my body.  I thanked my kidneys and my liver for believing in me enough to come back to full function after the trauma of anaphylactic shock, I thanked it for responding so well to the chemo, I thanked it for always fighting for me, for being patient with me as I grappled with fear and emotion, for furiously refusing to die and to my surprise, I thanked it for being so strong.  Before last night, I would have never described my body as strong, but holy crap, it is! 

And so, as I wait to see if my little left eyeball will bounce back to it’s pre-wolf attack condition, I think I will make it a habit to thank my “container” daily.  I plan to cheer it on as preparation for Thursday’s chemo – “one more honey, just get through one more and it’ll be alright!

We see what we want to see.  I want to see my body kick some serious Lupus a**.  There isn’t a lot of room in my vision for Lupus, you see.  Maybe just on the peripheral, which is reserved especially for overly aggressive wolf-like creatures… and morbidly obese eye slugs.


For your viewing pleasure:  “My Stroke of Insight” – Dr.  Jill Bolte Taylor

Adventures in Piano Land

I took a stab at the piano today, one hour and a half in the morning and an hour tonight.  This morning was a fiasco.  I had to stop because I was concentrating so hard I gave myself a headache.  I opened up my Grade 5 Royal Conservatory Piano Book to the first piece, welcomed jubilantly by a “WOW” sticker stamped proudly at the top.  The fact that I was “wow worthy” 13 years ago was little comfort as I struggled to remember what all the notes were.  All my earlier piano books and theory were downstairs, so I decided to challenge myself and see if I could remember on my own (hence, the resulting headache).  I could remember the right hand stuff no problem, but the left hand was a complete psycho.  It would end up in the wrong octave or I would start reading the notes as though it were a treble clef.  My left hand was also much slower, there were times where I was concentrating so hard that my eyes would shut from the sheer effort of it.   I would be muttering “Good boys deserve fudge always” and “All cows eat grass” out loud to refocus and remind myself of what the bass clef notes were.  I should have taped myself.  There should at least be some enjoyment and amusement from this whole thing.  I left the piano feeling slightly queasy.  No wonder I never practiced and quit twice… and that was when my brain was “normal.”

I tried again tonight and it went much better.  I think I have almost mastered that first peice.  The left hand still gets a little spastic in the middle part, but my parents say it’s sounding quite good.  I decided to relax a bit more and I allowed myself to laugh at myself.  Well, I was pretty “chipper” tonight, so that probably helped as well.  I was feeling so confident that I flipped to the piece I performed in Festival and tried that out too, but only got through a few bars.  I cannot believe I played this thing at all, much less in front of an audience and an adjudicator or that I actually memorized it, not to mention the fact that you’d have to add the pedal to it too!  I remembered the top half of the first page, but the rest was a total blank.  I can’t even imagine what it would sound like.  If I relearn this thing, then I have no choice but to learn how to drive standard.  Three driving pedals will no longer stir up the fear and anxiety that they did before!

I do find it interesting that my left hand was the weak link in this whole thing, since I have been under the belief that the left side of my brain has the most inflammation.  I know that it would be difficult for anyone to pick  up the piano again after 13 years, even without brain inflammation, but I have a feeling that most would stay in the right octave and not switch back and forth between reading the bass clef correctly to thinking it was the treble.  Can any piano players shed some light?  Do you think that my right hand was stronger for the sole reason that I am right handed?  I recently was doing the “tree pose” during yoga and I noticed that my left side is noticeably weaker and off balance.  My right side was strong and solid.  I went to the opthamologist a few weeks ago and my vision in my left eye has worsened, not because the eyeball itself is damaged, but because the brain is having trouble “uploading” the image.  My right eye is unchanged.  I also wonder if my left side is weaker for the sole reason that I have always believed that I am a right-brained person.  One of the reasons why the piece went so well tonight is because I stopped calling my left hand a psycho and started giving it a little credit… or that’s what I think anyway.  Can we really rule out the corny and almighty power of believing in yourself?  If I start to really believe that I am a left brained person or that the brain isn’t separated at all, will my left side improve?  And how do we prove it when I have so many medications pumping through my veins?  You know that the doctor folk will pat me on the head and say that sure, a positive attitude always helps, but it’s most definitely the chemo that has come to save the day.  And I am sure there are those who are reading this right now and think that the chemo is already working and that my efforts in controlling this thing have much less impact than I think.  And who knows, that might be true.  My ability to process things are not at their best, but I don’t know guys, I just have this feeling that I’m already changing my brain… and this goes beyond the inflammation stuff.  I feel like I am awakening parts of my brain that I wasn’t using before.  You know they say that we only use like 10% of it or something.  One of my keepers sent me a link to this video of this neuroscience entrepreneur (I highly enjoy those two words together, by the way) who talks about this new MRI technology that will allow us to see and control our brain function.  He says that we will be the first generation that will have the opportunity to learn how to control our brains so that we can get rid of things like chronic pain and even control things like our emotions.  Once I figure out how to post it, I’ll share it here.  It’s pretty exciting to hear him talk about it and it really does make sense to me that we would have the power within us to do that.  Why would we have this huge brain in our head if we were only going to use 10 % of it?

And just so you know, even though I took that creepy picture of me and the Time Magazine, I did not read any more of it.  Sigh.  I know.  I’m working on it.

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.