The Art is a Science

Yesterday, I stumbled upon this article featuring “Neurocomic;” a graphic novel that uses whimsical black and white drawings to explain the inner workings of the brain. Delving deep into the anatomical nitty gritty can be a bit overwhelming for this naturally right-brained gal, so I found this innovative partnership between a scientist and an artist very exciting. Multi-disciplinary work like Neurocomic paves the way for a general re-imagination of how health-related information is given to the public. There is a disconnect between the knowledge of physicians and the public’s ability to process and utilize that knowledge in their daily lives. By working together, the creative sector can be the translator, the link that connects patients to the information, or the art itself can be an outlet for processing the emotional ramifications of illness or caregiving. Perhaps more importantly, it creates an opening for a sense of lightness and play; two things that are seldom found in the dark corridors of failing health, but so sorely needed.

I’ll leave you with Neurocomic’s lovely trailer and a quote I found on the blog, “Creativity in Healthcare:”

“When I come to the hospital for an appointment, I leave the doctor’s office with nothing. I have no idea what the diagnosis will be, or when I know, if I will live. I’m not me, I’m nobody, I am my illness. I’m nothing. Then I see the artwork and I walk down the gallery. I start to feel again…I am back. I am myself again. I have an identity, I have a life. That’s what your galleries do for me. I want you to know what they have meant for me.” (oncology patient at U. of Michigan)

SIGN Language


I’m really tired today… a week of restless, topsy-turvy, bed-headed non- sleep.  

With no Hepatitis in sight, ma petit foie (that cartoon liver of mine) is easing up on it’s squeaky complaints, but just as Imuran leaves the scene, another kid arrives on the toxicity block.  It’s the “Big M” –  Mr. Methyltrexate; a cancer drug that Rheumatoid Arthritis patients take in lower doses and apparently, Lupie patients too.  And so, the search for a suitable replacement for my old friend Cyclophosphamide (Chemo) continues.  

After going up a whole 7.5 mg of “Evil P” (which is most likely the cause of my nights of non-sleep), I am now holding steady at 10 mg of Prednisone.  I haven’t started the “Big M” quite yet.  I told my rheumatology nurse today that I decided to forgo my other option, Cellcept; the side-effect heavy drug I sidelined in favour of Imuran.  The Big M has it’s own list of sicky-ickyness, but the info sheet claims a bedtime dosage could relegate all the pukey, achy fun into sleepy slumber.  Sure, as long as you can actually sleep.  Of course, it’s stupid to speculate on such things when I haven’t even received a call from the pharmacy to pick up my new bag of goodies.  

“People on Methyltrexate can be flare free for up to one and a half to two years.  That’s what we want, isn’t it?” My rheumy nurse asked as I stared at the Methyltrexate Info Sheet.  I nodded.  Sure.  One and a half to two years.  That’s good, right?  That’s good for a Lupie like me, right?  I had always convinced myself that I was one of the lucky ones…  just a mild case of Lupus, that’s all this was.  I’m fully realizing the extent of my denial.  How can it be mild when I had organ involvement from the very start?  I was never medicated properly.  To Dr. H, my wonderful new rheumatologist, well-medicated means little or no pain.  Me?  I thought properly medicated meant somewhat tolerable pain.  It had never occured to me that a person with Lupus could live without pain even if they were taking meds.  

“Take your time,” my rheumy nurse said reassuringly.  He was talking about the choice between Cellcept and Methyltrexate of course, but I was thinking more about the choice to literally TAKE MY TIME, to take it back, to OWN it, even if it’s just for a year or two.  Let’s make it pain-free.  Let’s work part-time.  Let’s make it MY TIME.

 Yes, please.

I glanced up at the torquoise hospital sign that was hanging above us as we spoke in the corridor.  The rheumatology clinic was in repair, resulting in a temporary change of location in the general hospital.  I had found my way there with slow and careful steps, wary of the queasy feeling in my stomach.  Sick people were everywhere, on wheely beds and chairs, beside me in the elevator… ME in the elevator.  My brain fuzz clicked on, buzzing like a neon sign at dusk.  When I approached the unfamiliar receptionists, that’s when I saw it.  The white lettering on the floating, blue-green sign said:  NEUROSCIENCE.  Out of every unit in that hospital, Rheumatology was moved to Brain Central.  I managed to smile at the cleverness of the Universe as flashbacks of Lupus Cerebritis psychosis filled my fuzz-buzzing head.

With one last glance at the sign, I navigated my way back to the elevator.  Almost immediately, I passed another unit to my right that I hadn’t noticed before:  


I smiled effortlessly this time.  Nice one, Universe.

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

“Where there is tea, there is hope.”

Apparently when I consume liquids, I bring the glass or mug to my face and as soon as the glass/ceramic edge touches my lips, my eyebrows scramble up my forehead and my eyes widen as though the endeavour was quite surprising.   Well, I do like surprises and I especially like tea… but that doesn’t explain all that, does it?  Oh well, I think you all know by now that I’m a bit of a silly one.

Where there is tea, there is hope” is a saying I saw etched into a tiny, decorative sign in a cute, prairie gift shop in Brandon, Manitoba.  It was the dead of winter, my joints ached, my fingers tinged yellow and purple inside my fists, my chest heavy and inflamed.  I distinctly remember that I had to put on more make-up than usual that morning to quiet the fiery redness of my butterfly rash (hide it, Elena, make sure no one can see).  The saying really struck a cord with me that evening.  Maybe it was because I was so cold and the thought of tea brought me some warmth or maybe it was because it had been one of the hardest winters of my lupus life.  My pain had been relentless.  I couldn’t even remember what it was like to have a “good day of pain.”  I had lost hope of ever getting one again.  It was nice to be reminded that hope can be found in a cup of tea; something so simple, something so readily available, something I have everyday. We get so overwhelmed and exhausted with life that we close our eyes in search of rest and so we miss it, we lose it.  But hope is a little trickster, it’s always there… it’s waiting to surprise you.  

Having a cup of tea is an analogy that people who preach “mindfulness” often refer to.  They say that when you have a cup of tea you must truly have that cup of tea.  Celebrate with your cup of tea.  Your entire focus should be the experience of sipping, of the temperature, the taste, the way it feels as the warmth travels down into your body, the texture and curvature of the mug as it presses into the skin of your palms.  Your mind is actively engaged in tea drinking and nothing else.  Mindfulness is about active participation in the “now moment.”  If you’re showering you should be showering, not going through your to do list or rehearsing the speech you are going to give to the employee you’re about to fire or planning the outfit you’re going to wear once you’re dried off.  The Dalai Lama says that you should enjoy every moment in life, including brushing your teeth.  Be present, he says.  Brush your teeth like you really mean it, people.  The Dalai Lama cracks me up.  

There is science behind what the delightful and wise Dalai Lama says.  As I mentioned in my last neuroscience session blog post, meditation, a powerful form of mindfulness, has been scientifically proven to show distinct patterns of brain activity and mindfulness training can actually start changing how your brain works.  By choosing “mindfulness” over “mindlessness,”  we reduce stress levels, resulting in the creation of anti-bodies, a stronger immune system and something called the “left-shift.”  The prefrontal cortex of our brains houses our emotions.   The “left side” of the brain is the “approach” part of the brain.  It is language and spatial oriented and is the mediator of positive emotions.  The right side is the “avoidance” part of the brain.  It’s angry, fearful, it’s job is to “protect” you and it’s where the negative, emotional states are housed.  This is where mindlessness resides, where our stress festers and boils over.

The Psychology PhD teaching my last neuroscience session asked, “is this happilogy or is it science?”  Well, apparently the best predictor of recovery from a heart attack is optimism.  Other scientifically tested facts include:  hostility increases likelihood of heart attacks, pessimists are more illness ridden, depression and stress lower immunity, psychotherapy lengthens life of cancer patients, family turmoil exacerbates asthma and jobs with high demand and low decision latitude increase coronary problems.  He posed a very interesting question:  Does the pain cause anxiety and depression or are we causing it by a right imbalance?

Positive psychology is the rediscovery of the psychology approach that promotes human flourishing, it studies the strengths and virtues that enable individuals and communities to “thrive.”  Positive psychologists seek “to find and nurture genius and talent”, and “to make normal life more fulfilling,” not simply to treat mental illness.  This type of psychology was moved into the background after WWII with all the thousands of soldiers coming home with severe post-traumatic disorder.  We needed to get these men better quickly, get them back into the work force, there was no time to concern ourselves with general human “flourishment.”  

The Psychology PHD that taught my last neuroscience session on “Mindfulness and Positive Psychology,” shared with us the positive psychology exercise that he feels saved his life.  It’s called “Three Good Things.”  He had shared it in countless lectures as his students fervently took notes in front of him, but he never tried it himself, not until he found himself paralyzed from head to toe unable to speak.  The exercise is simple.  Keep a diary.  Everyday identify and record three good things that occurred and your role in bringing them about.  He said the first time he did it was as he lay there in that hospital bed, he did it silently, writing three things on the inside of his head.  He said that one of his three things was, “well, I’m not dead.”  He asked the class why didn’t he die?  What was his role in that?  I sat there stunned.  I instantly had a flashback to when I was in the ICU two years ago, my kidneys and liver failing from anaphylactic shock, a team of white coats holding me down on the bed as others plunged oversized IVs into the sides of my wrists.  Everything is blurry because I don’t have my glasses, I feel my head nod downwards towards my chest and I am jolted awake by faces and lips moving closer to my own yelling, “Elena!  Elena!  Stay awake!”  I only realized months later while recovering at home with my parents that I was dying in that moment, that the doctors did not want me to pass out for fear that I would not wake up again.  I did not know I was dying the whole time I was in the hospital two years ago.  I had no idea.  I had no doubt that I would be leaving that hospital.  Is that part of the reason I didn’t die that night?  And then it got me thinking about why I “returned” to my body this time?  Why wasn’t I one of the many lupus cerebritis patients that I’ve read about who go into severe psychosis, are lost to their loved ones and then die of complications?  What was my role in that?  I remember smiling in class.  Of course the Psychology PHD had a role in him not dying.  I can’t articulate it, but what he had inside of him that eventually had him talking, walking, teaching that very class is exactly what’s inside of me.  A fighting spirit, maybe?  Will to live?  A knowledge that there is more to be done, that this is not the time?  I don’t know, but I’m glad it’s there.

The “Three Things Exercise” helps promote an internal locus of control, increases positive emotions and develops an appreciation of your role in influencing good things in your life.  The exercise takes discipline and must be done meaningfully, everyday.  When done properly, the exercise produces significant improvement with moderately to severely depressed people.  It is proved equal to antidepressant therapy in degree and durability of improvement.  It even increased relationship and sexual satisfaction in the least positive quartile i.e. in subjects selected for level of emotions.

So, have I tried this exercise, you ask?  No, not yet.  Looking back on my week, I think it would have been helpful if I did.  I couldn’t find hope.  Maybe it was the chemo on Thursday, maybe it was researching case study after case study where the patient dies or never recovers full cognitive abilities (did I mention I kept leaving off the end letter of words while note taking in class?), maybe it was the fact that it was cloudy the majority of the week, maybe it was because it was the busiest week of the year at work and I wasn’t there.  Whatever the reason, I was on the floor again.  I wanted all my brain books to f*** off.  I wanted all my manic emails and messages to disappear.  I wanted my blog to disappear.  I wanted to disappear.  I felt so removed and isolated from everyone anyway.  I felt like life moved on without me.  Doesn’t that only happen when you’re dead, I asked myself as I sat on my bedroom floor… but, I’m alive, aren’t I?!  I rapped on the inside of my forehead – “Hello?! I’m still here, people!!”  

What I didn’t realize during that lovely, pathetic episode was that I wasn’t in my head anymore.  The chair was gone.  I’m back.  I’m here.  “I” am here.  The manic feelings drain away more and more everyday and I feel myself shifting back into the familiar crevices of my mind and body.  I reflect on the last two months and the delusions and illusions of my mania spring up in front of me, sparkling clear, vivid, waiting to be faced, to be searched for truth and more importantly, to be let go.  And I’m scared and I’m shaking like a leaf because I know I need to wade through all that, I need to fully address what happened in order to be in a healthy emotional state, in order to take back my life.  Like I said before, the physical part is easy.  I laugh now at how easy I had it before, that I would trade a million sleepless, painful, chest heaving nights for filthy steroid-mixed lupus cerebritis.  

The good news is that by venturing into the frontiers of neuroscience and brain biology I have discovered that I have the power to change my brain.  I have the power to make this whole thing into the best thing that ever happened to me.  I have a role in whether I live or whether I let lupus “take the penthouse” of my life.  It’s a 24 hour job when you are in the office of health.  It’s easy to forget that you aren’t dead yet.  

A fellow lupie who went through lupus cerebritis two years ago generously offered this advice to me:  Remember who you really are, I guess it’s easy to forget, especially when you hear stories of things you did that you couldn’t even imagine. Don’t lose sight of you.  

Okay… deep breath.  I need to stop telling myself that I don’t know who I am.  At least “I am.”  I am here.  Isn’t that the most important thing?  

And so the battle blazes on and I will keep my eyes open, widen them even, the way I do with every sip, so that I can see the hope in my cup of tea.

Let’s drink to that, shall we?