Blurry Face & The Impending Victory of the Battle of the Brain

Just before my master keeper gently hurried me off to the ER that August Long Weekend, I sat on my couch in my beautiful character apartment with my computer on my lap, changing my profile picture on my facebook page.  I was completely unaware of what would happen next, that I would almost completely disconnect with my working mind and brain and body… and yet, looking back, somehow, some way, I did know.  Mind buzzing, I chose to change my profile pic to one that my master keeper had taken of me climbing the mountain stairs that led to the Seoul Tower in Korea.  I’m blurry because I’m running up the stairs in a silly, fatigued stupor, it’s night, the path is dark and it looks like there is much farther to go.  I wrote a caption underneath, “A journey of a thousand miles begins with a single step.  See you at the top!”  I finish it off with a happy face and changed my facebook status to this: “He who has health, has hope. And he who has hope, has everything.”  I then put on my best pyjamas, wrapped myself in my best shawl, put on my red and blue monkey socks (because they were funny and I knew that everyone would see my socks at the hospital, so why not make everyone smile?) and announced that I was ready to go.  It was like I knew I was going to be in the hospital for a while, that I knew something big was going to happen, that whatever it was it was going to be the biggest challenge yet and I entered into it with peace and humour and a certainty that I would get through it, that I would see everyone at the “top” when everything was over.  

In the days after I was released from the hospital, one of the messages I wrote myself was that I must “analyze artifacts of my past.” Completely submerged in my mania, I took over 200 pictures of my parents’ house, confident that upon further investigation I would discover clues that would lead me to my “destiny.”  It was all quite exciting.  It was as though my entire life I was leaving clues for my adult self to find, that “we” were all in on this master plan to help Elena succeed in life and “we” didn’t even know it!  It’s a lovely thought, isn’t it?  I’d like to think that the day I left for the hospital, my future self was smiling at me, leaving me a message of encouragement, telling me that everything will be okay.

The Lupus Society of Manitoba has asked me if they can post a link to my blog on the new website they are in the process of creating.  I said yes.  I called this a “medical blog” when I started it, the chronicles of my “Lupus Life.”  I try to keep it “Lupus-focused,” which is easy these days considering it pretty much defines my world right now.  I am very interested in how it will evolve as my life shifts back into the world that lies beyond the mental battleground I’ve been existing in.  My writing may become less and less interesting to some, the high stakes gone and the smoke and debris of the “Battle of the Brain” just a distant memory.  I am the first to admit that although life feels fascinating to me after all of this, Chipper and Evil Elena definitely spiced things up.  As I get better and better, my friends and family may not feel the need to read this anymore, content that the worst has passed and all is well.  My readers who don’t have Lupus may find that there is little to relate to.  I may find that despite my link on the website, my readers will dwindle as weeks and months pass.  I am prepared for that.  I don’t think I’ll be offended.

I called this blog “Lupus Face,” but when you click on a post, the bottom says “by the face” – the Lupus part is gone.  I set it up that way when I was still very sick and not of sound mind, so I guess you could say that was another message left by my mysterious “future self.”  My “face” looks the way it does because I want it to look that way.  The word Lupus is interchangeable with any other illness or problem I can think of.  I find myself amused that my moon face is the physical manifestation of this, although not entirely surprised at the poetic interconnectedness of my mind and body.  

I’m just another face in a sea of billions, just trying to keep my head above water, trying to find meaning in my life, climbing one step at a time to some unknown destination.  I’m flailing my arms and most times I look like a fool.  I will be your silly face if you like, but please know that I’m blurry and I don’t know much.  All I know is that the Battle of the Brain is nearing it’s end, the flags of victory all but plunged into the bloodied soil.  And as it is with any war, it will ripple on despite it’s “end” in more subtle, silent ways that are just as powerful but much less conducive to epic movie metaphor magic.  This is where the real work begins actually, the “in between,” that time and space between major flare ups.  When you’re really sick you have the luxury of not having to do anything, decide anything because you’re sick – how can you?  It’s easy to be sick.  The harder choice is to be well.

Chemo-Pond Reflections

Third chemo toxin round complete.  Three is a big number for me, it seems.  Let’s see if it ends here…

I came home with battle wounds.  The “needle man” punctured two of my tiny veins right through.  It took over half an hour for him to find a vein that he could actually use.  I am amazed that I have not developed a phobia of needles, especially after my delightful experience with the “spinal tap needle man” in the ER.  No puking, but I had to resign to my bed and that is where I stayed until this evening.  The rheumatology nurse called me to tell me I had to up my dose of Vitamin D because I am too low.  I know it’s probably because of the chemo (it’s known to strip the body of Vitamin D), but it’s more dramatic to think it’s because I live a vampiric existence these days.  The sun hardly ever touches my moon face. 

Lisa Ray, the actress living with bone cancer who inspired me to write this blog had her last chemo the day after I had mine.  She hadn’t written in her blog for weeks.  She said she couldn’t participate in her life, that she was “sitting on the roof” tipping pepperettes and whipped cream into her moon face.  She came back down from the roof, of course, but before she did she asked her readers, “are you fantasizing about a Cancer Vacation?  Cause if I didn’t feel so completely depleted, I’d be having the time of my life.”

I don’t have a rare form of cancer.  I just have lupus.  The timelines of my life are not held in the same menacing way.  I can’t begin to understand what Lisa Ray is going through and yet when she writes those words I feel myself melt right into them, like they were mine.  She too, is on steroids, experiencing night sweats and alterations in her personality, she calls her body her expanding wetsuit and every entry has at least one salute to her ever-expanding moon face and her unquenchable hunger.  I don’t have cancer.  I have lupus.  How can I have the audacity to say that I know what a cancer patient feels like?  Things could be so much worse.

My friends and family tell me to relax.  They tell me to watch movies because they wish they could stay home from work and watch movies.  They tell me to sit back and enjoy my “vacation.”  Have I mentioned that I am now officially on “medical leave?”  I have a great boss and I work for an amazing organization and they have given me time, as much time as I need to rest, to recover, to find myself again, to understand how the wolf has changed me this time around and I can’t even get myself to have a good time while doing it?  Everyone wishes they had this opportunity to sign out for a while, to reflect and all they see is me, sitting on my floor with my moon face in my hands wishing I was back at work again… wishing I was doing SOMETHING, anything.  I’m trying to have “fun.”  I swear.  It’s just that it also feels wrong to “have fun” right now, especially when I know things are so busy at work and also because, well, things just don’t feel very fun-like.  

I am happy though, of course.  I have such an amazing support system.  I am held up by the strongest and most loving people in the world.  They visit me and bring me my favourite treats and take me out to eat my favourite food.  They email me lovely notes telling me how much they love me and how proud they are of me and how strong they think I am being.  I have a roof over my head and lovely home-cooked meals and I get to see the smiling, warm faces of my parents everyday.  I can take walks and sleep in, write stories and read books.  I haven’t had a major manic episode in almost two weeks.  This might be my last chemo treatment.  I am down from 60 mg of prednisone a day to 40 mg.  Life is good… so, why can’t I have “fun?”  I feel like I owe it to all of you, all of you out there working hard without a break.  If I don’t have fun it’s like a slap in the face, time wasted.  That’s the last thing I want to do.  There is no time to waste.   

To be honest, I have found myself thinking about not writing in this blog anymore.  I am still sorting through those feelings… I have been feeling very confused about it’s role in my recovery.  I have been doing a lot of research on lupus, brains, bipolar hypermania and steroidal psychosis lately, even more than usual.  My whole premise for this blog was that “knowledge is power,” that we all have the power to heal ourselves, that in order to do that we have to face our disease full on with openness and courage.  My mania made me unafraid to pour my heart out into the internet world, to share how weak I felt sometimes, the fear and yes, the hope as well, but is it too much?  Should these words be tucked away in my journal somewhere or reserved for late night conversations over tea with close friends?  Am I just as silly as those who twitter their everyday goings-on for people they hardly know?  Is this just some kind of self-centred, self-serving exercise made in throes of mania?  I came across some “knowledge” the night before my chemo treatment that sent me reeling.  It made me question if knowledge is really power at all.  I’ve been in search of knowledge constantly these last two months – I am reading, researching, googling, questioning 24/7 and I don’t feel like I know more at all.  I just feel more confused.  I am no closer to figuring out how I move forward with my life, of what the next step is in regaining the independence I once had.  The only thing that is certain is that I am changed.  What that means in it’s entirety I do not know.  Only time will tell.  So do I just stop and truly “sign out?”  Do I stop researching and blogging and just read fiction and write stories?  Is that the real way to heal?  Is that the real way in which I will discover the Elena left behind after all of this is over?  I, of course, don’t know and I don’t think any of you know the answer either, so maybe the whole point is that there are no answers.  

Well, that’s just unacceptable, people.  There has to be an answer.  There has to be.  I just wish I could trust myself enough to know when I’ve found it.

The Face vs. The Box of “Crazy”

Everyone has a skeleton in their closet.  Mine is a box.  A box full of “crazy.”  

When I first came home from the hospital, I wrote everything down, mostly because I was afraid I was going to forget what I was thinking a moment later.  I wrote every detail of my day in my symptom journal: Hours slept, mood ratings (self-assessment and my parents’), meals, snacks, attempts at naps, activities, etc.  I kept a small notebook in my purse to write down worthy “quote moments” literally seconds after the person said it, I’d even write out whole conversations like I was writing a play.  I’d write down everything in point-form, dozens of intricate puzzles that needed decoding, like the ones that Ben Affleck’s character left himself in the movie “Memento.”  I’d take pictures of signs and random things with my cell phone. This one day I took over 200 pictures with my digital camera of items around my house because I believed that everything in my childhood home had a “message” for me.  

Apparently I thought it was important to take this one...

Self-portrait (two weeks after release from hospital)


I even used my digital camera to record myself in a manic state… I even thought I was going to send it to Oprah.  I wrote post-it notes constantly and put them everywhere: in between books, on shelves, on my closet, on my walls, in my wallet.  I’d find things that I believed were “messages” and put them on display like trophies.  Eventually my room looked like… well, it looked crazy… like the person living in it was definitely CRAZY.

Two and a half weeks ago, I came home (after getting into a minor car accident, actually) and I put it all in a box.  All of it.  I ripped all the post-its off the wall, grabbed all my journals and writings  and creepy messages from during my time in the hospital and after, all the books and magazines I bought because I thought they  were “calling out to me,” I even put my keys in there.  I don’t know why I did the last thing… I’ve been confused about where they’ve been this whole time.  I just dumped it all in there, closed the flaps, closed my closet doors and sat there for hours, on the floor, leaning against my bed… staring at it… the skeleton in my closet.  My own personal box of “crazy.”  I decided that night that I wasn’t going to write everything down anymore.  I decided that it was time to trust that I can remember things on my own.  That was a scary decision.  I don’t think I truly believed that I could do it… I felt like I had lost so much of what had happened to me already…

The other night I decided it was time to face the box of crazy.  It’s the only way I am going to get through this.  I need to face reality.  I can’t keep pretending that I’m different characters in my favourite stories, battling imaginary devils and demons. This is real life.  This is MY LIFE.  I need to get my life back.  The things in that box represent all the illusions I have to wade through, all the tricks and booby traps of my brain.  I need to know them, I need to decode them, I need to understand them.  I can’t just put them away like they don’t exist.  I opened the closet and for a good twenty minutes it was just me and the box.  Standoff (cue tumbleweed), both of us unmoving, just waiting, staring, wondering… will she do it?  Suddenly, I leapt forward and emptied it as quickly as I had filled it, ripping it open like I’d rip off a band-aid, eyes half closed from the effort… but I did it.  I emptied it.  I laid out all the brain books and magazines and clippings and info on Lupus on my desk, ready for reading.  I put all the books that “told me to buy them” boldly on the shelves, stored all the creepy messages in plastic inserts ready for further investigation, I put my journals on my bedside table.  Ok fine, I did take a small break in between.  I had to.  Oh, I guess I didn’t mention that while I was doing this, I almost gave myself a panic attack.  My heart was beating so fast and every time I would bring out a new item it would quicken and I would sweat and I couldn’t breathe.  It was all the craziness, I guess.  Each item was crazier than the next, more surprising and more disturbing than the next… and all of it, ALL OF IT, was ME.  I did that.  I bought that.  I thought that.  Yah.  I needed a little break.  They weren’t kidding when they said that facing the truth, facing yourself is the hardest thing you will ever do.  I just never thought I’d be this scary looking.

The box is still in the closet, but it’s not entirely empty.  When I filled it with craziness that night two and a half weeks ago, it was already storing framed pictures of my past life on the stage; my very first headshot, me getting married as Tzeitel in “Fiddler on the Roof” in Grade 12, me on stage during my fourth year honours play during my last year of university.  Is this the hope that Pandora kept safe in her box?  Perhaps.  We need to get Elena “uncrazy” first.

I have demanded that I see a mental health professional as soon as possible.  I have been asking for one ever since I left the hospital.  I’ve been playing phone tag with the doctor’s office receptionist, but the wheels are in motion.  There’s the hope, I think.  I can’t do this all by myself anymore.  I am a brave warrior woman, it is true, but the brain is dark and deceptive terrain.   It’s time to get myself a guide.

Here’s a quick update on the physical state of your favourite lab rat:

I’ve had 15 vials of blood taken in the last week.  Blood test results look good.  White blood cell count normal after second cycle of chemo, hemoglobin a little low (but apparently that is normal for a lupie so no real concern), kidneys doing a-ok despite cocktail of daily drugs (they almost shut down two years ago, so I marvel at their steely magnificence!).  Steroid dose is still very high, but is down from 60 mg a day to 50 mg (the goal is to go down to 5 mg, I think) and moon face continues to expand.  Thrush (mouth fungus) comes and goes, but still has a grody presence.  Continued hair loss.  Analyzed my forehead and discovered there is new hair growth there, apparently another side effect of the steroids.  Sigh.  Forehead fuzz.  Great.  Found two blood clots in two veins in my left hand.  The internet says it is “lupus anticoagulant,” which isn’t too much of a big deal except that it hurts (got more blood drawn for futher investigation) but it will increase my chances of miscarriage… ya know, if the chemo doesn’t fry my ovaries first.  I’ve been put on birth control again to try to protect them.  I stopped taking it two years ago after my anaphylactic shock because I wanted to cut down on the meds in my body and for the fact that increased levels of estrogen is proven to increase lupus flares in women.  I was not happy to hear that I had to take them again, especially since I was so excited to tell her that I actually got my period after not having it for three months (most likely from not eating for two months prior to my hospital stay), but the look of concern and seriousness in Dr. H’s face swayed me in the end.  “Actually, I’d prefer that your ovaries weren’t active right now.  We need to put them to sleep.”  She was like a warrior… a warrior for my ovaries.  I like that.  It’s nice to have one.  Tomorrow I have another appointment at the “lab” where I had my chemo. I am not sure what they are going to do to me in that one – I only just gave blood again today.  My third cycle of chemo is on the 15th and then I have a follow-up appointment for my eyes to see if the vision is improving and acupuncture and hopefully future appointments with a psychologist … well, I told my mom we have too many appointments and that we need a vacation from this weird “vacation” that I’m having.  Hawaii, anyone?

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...