“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?

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Dr. Frankenstein & The New Frontier

Yes, yes, my friends, it is true.  It was Dr. Frankenstein that led me on my first voyage into the neuroscience frontier.  This Frankenstein however, was female, of German background and interestingly enough, received a degree at the the same university I did.  Dr. Frankenstein has been around this whole time… in fact, she works in the pink buildings across the street from the university.  Life is fabulously strange.  Now for those of you who are only familiar with the more recent representations of Frankenstein, you may be confused since you must think that Frankenstein was the monster and not the man who created him.  In Mary Shelley’s novel, Frankenstein is indeed the doctor, the mad scientist who created without asking the important question of whether he should.  One of my most favourite places in the world is the place where Shelley wrote that novel, the mysterious and beautiful city of Montreux, Switzerland.  I remember walking in the rainy mist along the lake waiting for my hostel to open and thinking, “wow, I totally understand why that story came out of this place.”  I don’t know quite why I thought that, but I digress… sentimental backpacker reflections do not belong here. Although I think that she was doing drugs at the same time, so perhaps I can’t give Montreux all the credit…

“The Brain and Pain.”  I found myself thinking about how silly it was that I am a person who experiences pain on a high level everyday and yet I never ever thought about understanding pain itself.  I just accepted it was there.  It’s part of life, part of the way my body functions, so why even waste the energy on finding out more.  I thought, pain is subjective anyway, it cannot be measured into one sensation and the emotional components make it even more complicated… it just seemed like a useless task.  Oh, human beings and the ignorant bliss they love to keep warm in.  

I won’t bore you with all the technical stuff, but basically pain is a “multi-modal network,” which means that you cannot trace it back to just one part of the brain.  It’s everywhere, baby, it goes and comes from everywhere.  And just to make things more confusing, it even happens when there is no pain source.  There is this chunk of grey matter in the mid-brain that plays an important part in pain control.  Apparently, scientists discovered that if they stimulated that part of the brain during surgery, anesthetic was not required!   This surgery was on a rat, mind you, but still, that’s pretty incredible.  As a side note, I found it very interesting that a cross section of a spinal cord is a butterfly shape… it is also the symbol of Lupus organizations and the rash on my face bears the same name.

Dr. F talked about the different ways of pain control, most of which will not surprise you:  Distraction, Medication, Acupuncture, Meditation and the last resort if nothing works, Neurostimulation.  She shared with us very interesting studies on distraction techniques and about this virtual reality snow world video game that burn victims play when they need to get their bandages removed and changed.  Studies show that those who played the game had significantly lower pain ratings than those who didn’t.  The study also compared playing the virtual reality game to just playing nintendo and it didn’t even compare at all.  The nintendo did very little in decreasing the pain ratings of patients.  Did the virtual reality part of the game make a difference?  Was it that it was a snow world and that the “coldness” helped to counteract the “burn” of their burns?  Psychology and science and technology at it’s best?  Well, it is fascinating at the very least.  

I found the acupuncture portion particularly interesting because I have had two treatments already and I am under the belief that it has helped me greatly.  I feel less agitated and I am finally able to nap more than 10 minutes.  I stay in bed and relax and even snooze till 12 noon sometimes, which is a huge change.  The hyperness caused by my steroids usually has me out of bed right away, literally jumping out of my bed to start my 20 hour days.  My steroid dose was lowered by 10 mg before my last chemo but I am still on a very high dose.  It could not have caused this big of a change.  I mean, my moon face is still expanding and I am growing peach fuzz on my forehead.  What more can I say?  Anyway, studies show that there is an added element to the effectiveness of acupuncture – the power of positive expectations.  Those who had low expectations did not benefit as much as those who did.  They also did this study with a “fake acupuncture” and there was no benefit to either group which means that the acupuncture itself was shown as a valid medical practice.  Well, Chinese medicine is all about positive “chi,” right?  So, if you have negative chi then of course you won’t benefit as much.  Isn’t that the way with everything in life anyhow?  You know, the whole “self-fulfilling prophecy” thing?  If you think it’s going to suck, it will.  So simple, right?  And I am sure this study has made some of you roll your eyes and say, “Oh God, here’s that “power of positive thinking” thing again.  Give me a freaking break!”  Sure, it’s warm and fuzzy and cliche, but I don’t know people… I am starting to think that we have more control over things in our lives than we think… why not our bodies too?

I think that the meditation pain control technique is the most powerful of all.  Studies done with “expert meditators” and “amateur meditators” show without a doubt that meditation not only increases a person’s pain threshold, but also lowers pain ratings consistently.  During the study, the amateur meditators were eventually able to maintain levels close to the experts.  We do have the power within us, the strength within us to heal from within.  It’s just too bad we live in a world where the “easy way” has the rule of the land and discipline has been associated with a hard life devoid of fun and happiness.  I won’t go into the last way of pain control, the one that you can resort to if 1 – 4 doesn’t work, because we all know what that’s all about, getting some machine to do the work for you.  We usually go straight to number five anyway… I mean, who has time to actually try those things anyway?  Isn’t meditation a life long practice kind of thing?  Forget it, right?  Right.

I won’t talk about meds either.  That’s pretty self-explanatory.  And I know that if I talk about it I will start a rant about how absolutely horrible steroids are and how my fuzzy forehead makes me feel like Michael J. Fox in that 80’s movie, “Teen Wolf” or how I am already thinking of ways to cover up the appearance of a steroidal humpback should it appear or that the blood clots in my hand actually make me very nervous and I hate that they happen to be in a spot that ensures that I see them constantly all day.  See?  That was totally the rant I was talking about.

I had a chance to talk to the professor who set up these sessions and he kindly took the time to listen to my situation.  I asked him why my scans didn’t show anything and he said he believed that my situation is more complex and that just as pain is multi-modal, he believes that the damage in my brain is wide spread and more “fibre” based.  Dr. F is part of the research team that is creating these amazing magnetic x rays that have the capability to detect the complexities of conditions like mine… and it’s all happening right here in Winnipeg.  Again, I must say, who would have known?  I was in a building where there are magnets a billion times more powerful than that of the magnetic pull of the Earth.  

And yet, as I marveled at the ingenuity of man, I felt a nagging pull deep down in the pit of my stomach.  It was the very same feeling I had as a child watching Jurassic Park for the first time, discovering in horror what happens when mankind struts arrogantly in the face of nature.  It is the same with our dear Dr. Frankenstein, Mary Shelley’s tortured scientist.  Can we really be sure that our best intentions are just that?  Is that our fatal flaw, our arrogance in the fact that we can, our blatant disregard for whether we should?  Should we even try to battle nature and the diseases that she has chosen in order to somehow regain balance on this dying Earth?  I need to find out more about the  ethics around this whole thing.  For some reason, I feel like stem cell research could be the key in curing auto-immune diseases like Lupus, but I don’t know enough about it to make a comment on it ethically or scientifically.  It is my hope that one day our medical system and society will be one that is preventative and holistic in it’s essence and that the reactive battle that we are waging will have a smaller part to play… but I am a dreamer, my friends.  An idealist dreamer with a screwed up brain.  Who would ever listen to me?