“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?

Wanted: Your Brain

Ok people, we’re getting to the part where I need your help, where I need YOUR brain.  You know now from my letter to Dr. H that I’ve already gotten my cognition under control, but there’s still more that I can do.  I just got my piano tuned so that I can re-learn and surpass all five of the grades that I completed as a child and plans are in the works for me to learn chess.  Sudoku is also on the list, along with a serious attempt to learn Tagalog (I can understand, but I can’t speak) and sprucing up on my Francais.  Memory research is on deck for next week.  Basically we are on a mission to change my brain.  Change it, improve it, strengthen it.  I can’t work right now for obvious reasons, so from Monday to Friday from 9 – 430, I read about the brain, search for articles and case studies about Lupus Cerebritis and bipolar mania and just lupus in general, I record and rate the severity of my symptoms, my hours of sleep, etc.,  I’ve even put them into graphs.  It’s the weekend, so I put those things away and try to relax.  Even during the fight of you life, you gotta take a break.  So starting next week, I’m going to start posting questions and asking you to think about strategies in doing things like increasing memory function.  And don’t worry, you won’t have to get your hands dirty, I’ll take your war strategies to the front lines and test them out.  I’m the lab rat of your dreams, remember?

My dear father came into my room this morning and handed me a portion of the Sunday newspaper, “You might be interested in this.”  Squinting, I brought the paper up to my nose (literally up to my nose because my glasses were still on my night table) and the first words I saw were “Frontiers in Neuroscience.”  Now, most people would sit up in bed and think, oh, that’s an interesting coincidence.  I, on the other hand, put the paper right back down onto the bed and started laughing.  That’s what usually happens when you don’t know what else to do… you just laugh.  It’s usually a combination kind of laugh, like a laugh/cry or a nervous/scared kind of laugh or a holy crap (!) kind of laugh.  I think mine was somewhere in between all those.  I eventually picked the paper back up and read that the University of Winnipeg, my alma mater, is holding a new lecture series on neuroscience with topics that include brain fitness, dealing with pain, memory and emotionality, mysteries of disease, positive psychology and “more.”  You understand why I started laughing.  What you don’t know is that a few days out of the hospital Time magazine had a special issue out called “The Brain: A User’s Guide” or that the University of Manitoba’s student newspaper currently has a huge cartoon on the front of a face and it’s huge, exposed brain in order to highlight a story on right brains vs. left.  Nor do you know that I ended up on the wrong floor the morning of my chemo treatment, a floor that ended up being the Neuropsychology Unit of the hospital.  I will say no more… frankly because the whole thing creeps me out.  Just looking at the picture attached with this post freaks me out. I have the Time magazine and that newspaper in my room right now, covered up somewhere because the sight of it gives me a queasy feeling in my stomach.  I will read them eventually and I’ve actually cracked open the Time magazine finally (it’s been almost a month since I bought it), but every time I try to make a serious attempt at it, I usually stop before I even open the pages because I end up just hiding it from sight again.  Yah, I know.  It makes me feel ridiculous.

So ANYWAY, I, of course, plan to go and explore this “frontier” called neuroscience and if there are any Winnipeggers out there who want to join me, I would encourage you to do so… I have a feeling that it’s going to be very interesting.

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.