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?

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...