“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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Gratitude: For The Keepers

Whether you are diagnosed with cancer or diabetes or clinical depression, your chances of recovery, your chances of remission, your chances at a happy life depends on who you have around you.  Your support system.  Your keepers.  During my last neuroscience session, I learned that the survival rate of cancer patients increases by 50% if the patient has at least one person in their life that they feel they can talk to.   And even if you are lucky enough not to have a disease of any kind, we all need people there to “keep” us.  We do funny things when our lives are flung into chaos.  We push people away or we choose one person and drown them because we are too fearful or ashamed to share the reality of our situation with anyone else.  Illness can be very much defined the way Dr. Frankenstein defined pain – you can’t track it to one specific place, it goes everywhere, defies logic, it even exists without a source.  Illness is not satisfied with staying in the confines of one body.  It permeates the skins of other bodies, it stresses their minds,  it takes them in and whether you like it or not, you’ve infected your keepers.  They have it too.

I mention my master keeper in this blog quite often.  He has held this position officially for almost 6 years.  I would say that it was not his choice, since it was I who burdened him with the emotional baggage of an illness I refused to fully reveal to anyone else, but I cannot ignore that he did choose to stay.  I have listened in sadness to dear friends and fellow “lupies” who describe to me their pain and frustration watching lovers and friends walk out of their lives as they lie bed-ridden and in crisis.  I have never lost a keeper.   I am humbled by that every second of my life… and no one humbles me more than my master keeper.  He is on a well-deserved “sabbatical” from his duties at present, living in a land of weeping willows far, far away.  Looking back, we should have known what was coming.  All the warning signs were there.  It’s almost laughable how visible the wolf really was, just waiting, waiting, waiting, right there, right in front of our faces.  But, I don’t really know how anyone can be fully prepared for Lupus Cerebritis.  I am still reeling from the complexity and strangeness of it all, it’s inexplicable impact and power.  It leaves nothing unscathed.  The wolf devours everything:  The body, the brain, the mind, the spirit.  There is no refuge.  There is no rest.  

He will return one day soon and when he does he will hand over the position of “master keeper” to the person who should have had it in the first place… me.  I will never be able to articulate all the things that he has done for me, nor will I ever feel like I have done enough to repay him and I am sure that I will never stop feeling guilty for all the things I put him through.  All I know is that I am grateful for him.  Without him I would not have realized what I do now… that I am the princess who saves herself.

So, today, during Canadian Thanksgiving Weekend, I dedicate this post to my keepers.  They know who they are.  I am here because you love me.  I am grateful for you everyday.  I promise you that I am doing everything I can to make sure you never have to go through something like this again.  

A special mention goes out  to my parents, the two people who have truly been living with Lupus Cerebritis.  They stand like an impenetrable stone wall and everyday they face it, they take it, they wait in hope that their daughter will return to them whole with no conditions, no complaints.  My heroes, my team-mates, my healers.  

And to all of you out there that suffer with a chronic or terminal illness of any kind or if you are someone who is completely healthy but is going through an emotional crisis, remember that your keepers need keepers too.  And caregivers, remember that you deserve a break, that you need to be “kept,” that the best thing you can do for the person you’re caring for is to care for yourself.  It’s a difficult and scary balancing act, I know.  Hardly any of us get it right, but as long as we keep trying, right?  

And so I am thankful.  Thankful that I am “kept.”  And yes, I am even thankful for the wolf.  Having lupus is a gift, albeit a sometimes crappy gift that can explode in your face, but still a gift.  I would not change one part of my tissue-damaged brain.  This is part of my journey.  I was born to live through this.  I was given my keepers so that I can live through this and I am.  I am feeling better everyday now.  I am getting there.  I will get there.  

And keepers, it’s all because of you.

Into the Fire (Who is the Phoenix?)

Ok, people, I’m back. I scrapped it out with the 7th Deadly Sin; I’m bloody, I’m battered, but I’m back.  And hey, I don’t even need war paint because my moon face scared it off for me.  It’s a joke, people.  Self-deprecating humour helps people relate… ok, FINE.

I won’t lie to you folks.  This has been a rough week. I have been on the very edge of falling into the darkness; the deep, dark depression, that I’ve only truly felt once, in Toronto 8 years ago, at the height of my painful (and unmedicated) arthritic symptoms.  I felt the dark clouds come over me again a few months later when I was first diagnosed and again two years ago when I was forced to move back into my childhood home in order to recover from almost dying of anaphylactic shock, but the memory of that first time kept me on the outer edges of darkness.  I never fully fell in.  The day I wrote my last post, I almost fell.  I was so close I could feel the wet, cold chill of the darkness, like it’s hands came out like waves upon a shore, licking at my feet .  I censored my post to make it sound like I was more upset about the moon face thing, which I truly am, but it was a bit more serious than that.  I don’t mean to deceive you, my dear friends, but you can understand that I didn’t want to worry you to that extent.  I knew that it would pass.  I just needed time, which is why I took a short break from writing here.   Now that I am “back” and I told the creepy depression wave thingies to screw off, I thought that it was okay for me to clarify things.  My keepers may be surprised to hear that I have felt depression to this extent.  I must admit that I am surprised too.  I haven’t, until this very moment, allowed myself to really think about it.  

To make matters worse, while trying to tap dance around depression’s grody fingers, I have also been ON FIRE.  Literally, ON FIRE.  And I knew I would be.  I knew since last week.  I knew that this week I would be really really really really really pissed off.  I spent all of last week mentally preparing for it.  And sure enough, this past Monday came around and yup… TOTALLY PISSED. “Chipper” took a holiday for the entire first half of the week.  She’s shown up for some short-lived good times since then (I’ve decided that Chipper is indeed a female – this makes Chester (male) very happy), but she’s been largely pushed back by evil, fiery Elena.  We have no creative name for her yet.  She’s definitely not a cartoon monkey like 10 year old Elena and costochondritis – she actually looks very human and very much like me.  I’ve called her “the devil” the last couple days, but I don’t think that even that’s entirely accurate.  I will definitely take suggestions.  And where have I been while all this is happening?  Where I always am; even further back, behind a locked door, in a plastic patio chair, “watching.”  I used this metaphor of the plastic chair while talking to one of my keepers today.  I said, “I don’t even get a cushion.  Yah.  My ass really hurts.”  I use the term “I” loosely these days.  There are so many Elenas and monkeys running around, I don’t know who’s who anymore.  Try to find Waldo in THIS morbid scene… I’ll even wear the hat to help you out.  For those younger/confused readers out there, that was a clever reference to the “Where’s Waldo” picture books of old… or maybe kids still “read” those… 

Getting back to fiery, evil Elena or whatever her name is, I’ve always known that she’s existed.  She’s been inside of me for a long time.  She’s never come out full force, though.  Even now, in my manic state, I have been able to hold her back from revealing her true power.  I have to.  My parents are strong people, the strongest actually, but I don’t think that even they could handle her in her true form.  I am not one to show my true anger often.  It usually trickles out of me in modified forms, most often in crankiness and bitchy comments, but I don’t think I can remember a time where I truly lost it on someone.   And believe me people, YOU DO NOT WANT THAT TO HAPPEN.  I’ve said that many times to people in the past and everyone has the same reaction.  Disbelief.  “Sweet, smiley Elena would NEVER get THAT mad at anyone.”  Seriously, people, for the first time I am actually face to face with her, inches away from her fiery face and even I am surprised at her power.  “I” who is “she.”  Absurd, isn’t it?  Yah.  What isn’t these days?

I did, however, allow myself to give into the anger today.  I let it consume me.  I let it take me over during a conversation with one of my keepers… my Master Keeper actually.  There’s a reason why he’s the Master Keeper, so don’t worry about him.  He can take it and it wasn’t directed at him at all.   And even with him, I kept a lot of it in check because when I really wanted to scream and yell it all out, I kept it to an intense whisper for his benefit and for my parents’ who were in the next room.  I don’t know how to fully explain how it felt to give into the fire. I felt more powerful than I have ever felt in my entire life, but also the weakest I have ever felt.  It was invigorating and yet filled me with shame to have to go there, to have to give in.  I have to tell you that I feel like there is so much fire in me, that I feel so “powerful” right now that I fully believe, that if I wanted to, I could really physically hurt someone.  Yes, even in the frail state my body is in, I think I could definitely f*** someone up.  And yes, I just censored that swear.  I might not be working right now, but I am still a role model.  So, kids, swearing for the sake of swearing or using it to describe someone or a lewd act is not good, but there are times where the F word is the only suitable word to describe certain intense feelings of frustration or in this case, what would happen to someone if I physically attacked them right now.  Cool?  Cool. I know that there are those looks of disbelief happening out there in regards to my last statement (about f***ing someone up, not the other thing) and fine, don’t believe me.  It doesn’t matter anyway, because I realize now, after moving away from the edge of darkness, that I have the power to control that.  So, I guess in the end you are right.  I could… but I never would.  Well, as long as I am still present, here in my plastic chair.  The chair was empty in the hospital for a while, remember?  Unfortunately, I don’t have any control of what happens then.  Don’t worry, I’ve gone to a lawyer regarding power of attorney and a living will in case it does.  My parents will know what to do.  They are cool like that.

So ANYWAY, that got me thinking about X-MEN, another set of stories that I find highly enjoyable.  I used to steal my brother’s X-Men comics and read them secretly in the bathroom.  Storm was immediately my favourite female mutant.  Makes sense, right?  She’s the ethnic one in the group, she’s hot, she controls the freaking weather.  Pure awesomeness.  Although I had a realization today that I have actually been more drawn to her best friend, Jean Grey, the powerful mutant with telepathic and telekinetic powers that transforms into the dangerous and even more powerful Phoenix.  Now, I am by no means comparing myself physically to Famke Janssen, the gorgeous actress who plays her in the movies or even Jean Grey, the original comic doodle herself.  I know I’m no Halle Berry, but I could at least pull off the ethnic part of her to some extent.  I find it funny that once again, the metaphor of Jean’s inner struggle with The Phoenix (shown in the pic I attached to the beginning of this post), fits perfectly with the fiery struggle I am having with the Elenas running around in my head, just as the LOTR metaphor fit and the Jesus one fit, etc.  Even the fact that as The Phoenix, Jean was able to resurrect herself after death fits.  We all know that I shouldn’t be alive or present right now.  I’ve been on the brink of death twice, the 2nd time the doctors basically told my mom it was over and this last time, my whole consciousness/being left my body entirely.  And yet “I” am here.  So, who is The Phoenix really?  Is it “me?”  Will my ending be different then Jean’s?  Will I have the strength to harness the dark and fiery power of The Phoenix?  For those of you who don’t know, Jean gains control from The Phoenix long enough to sacrifice herself (well, in the movies anyway, the comics drag it on into other less interesting stories later on) in order to save her fellow X-Men.  She knew the only way to end the pain and suffering caused by The Phoenix was to end her own life, thus ending The Phoenix’s life.  Sad, isn’t it?  Well, don’t be too sad about it.  The cute little cartoon cactus has left the building, remember?  I have a strong feeling that my ending will involve Jean Grey not only surviving, but gaining a new power… perhaps fireballs that form at her palms?  

We will get back to fascinating brain stuff and more medical/physical stuff this upcoming week, I promise.  Yes, I know the emotional/mental stuff is important too, but I have neglected the other side of it a little too long.  I haven’t written in my symptom journal for almost two weeks.  I am still only averaging about 4 hours of sleep a night and that’s an improvement from when I was only getting an hour and a half.  Being awake 20 hours everyday is quite the switch from my “normal” day as a Lupie: Wake up, work, come home, nap for 2 – 4 hours, get up to eat, go back to sleep, repeat (and that’s when work actually ended at 430 and there was nothing scheduled in the evening… so okay, I guess those days wouldn’t happen too often).  I rejoice when I am actually able to nap these days.  Although today was a different kind of day.  I felt more physically exhausted than mentally exhausted for the first time since being in the hospital.  Again, it shouldn’t feel strange to me, because that’s my “normal” state.  I feel my inflammation sitting on the inside of my skin, ever present.  The drugs provide this invisible barrier, but I always feel the pain to some degree, I always feel the inflammation’s presence.  Yes, I can finally reach the bottom of every breath and sleep lying down, but when I gently touch the front and sides of my rib cage with my fingers, my skin cries out with tenderness and pain.  And even my joint pain, which I believed was being effectively controlled by the steroids, is ever present.  My acupuncturist was examining my legs and said, “Oh, your knees are swollen.”  I looked down in surprise and said, “Oh really?  I don’t even feel that.”  I was actually a little annoyed at him for mentioning it.  My knees hurt all day after that.  It’s funny what happens when you are used to experiencing an 8 -12 pain level everyday.  I guess after a while your mind doesn’t even bother registering anything below 5.  Well, I guess I can at least by grateful to my brain for that.  So to sum it up, I guess I could say that it’s all an illusion.  The brain stuff, that the inflammation is “gone”… it’s all an illusion.  So, let’s figure out what’s real people and get this party started.  I have a lot of stuff that needs to get done, so let’s get me better, shall we?

The Final Stand-Off... to be continued...

The Final Stand-Off... to be continued...