The Secret to Hippocampus Happiness

My inner neuroscience geek and I couldn’t help but be pleased with the exclamatory greeting that welcomed us upon arrival to my most recent naturopath appointment, so naturally, I wanted to bring it home to you!   147  minutes of aerobic goodness per week was a pretty laughable goal back in the day with a busy work schedule and consistent flares.  I’m not at all surprised to learn my hippocampus was dwindling as a result.   Some Lupies experience short-term memory loss as part of their “lupus fog” and fatigue.  I’ve never experienced that (except for a short time during my last flare), but my long-term memory is terrible.  I don’t know if that has anything to do with Lupus, but most often when keepers reminisce and ask, “Elena, do you remember when…” my answer is no.  It saddens me that so many of my memories are not readily accessible to me.  The brain is an incredible organ, capable of mysterious ways of healing and regenerating, so I am hopeful this will not always be the case.  If I can make it happen, potential growth in my memory muscle is a definite bonus for me!

At the moment, my two summer dance classes and running put me over the top for aerobic minutes and with yoga twice a week, I’m the most active I have ever been in my entire life.  Don’t get me wrong, my body and I are still struggling to understand each other in this strange, pain-free state, so my physical adventures are still in the stage of slow and steady discovery.  In yoga class, my muscles and I are never more aware of this!  But, really, for me, it’s not so much about the minutes, it’s about sustaining the regular physical activity, something that I’ve never had the ability or the chance to do until recently.  To be honest, I’m happy with ANY amount of minutes!  My last week of summer dance classes end next week, so my high aerobic minutes will take a hit, but at least for now, I’m making my hippocampus happy and hopefully, all this activity is increasing my white blood cells as well!

In related news, this past Sunday, I completed the 2.6 mile run I committed to in a previous blog post. I surpassed my finishing time goal of 30 minutes by four minutes, and to my surprise, came in 6th in my age category!  The run included families, so most of the women in my age category were slowed down by their children, putting a pretty hilarious spin on my ranking, but it was still a lovely turn of events!  My next running commitment is a 10 km run benefiting the Canadian Diabetes Association in September.  It will be the longest distance yet (eek!), requiring an actual training plan and increased awareness of what my body needs in regards to recovery time and nutrition.  So, it seems I have a bit of research ahead of me, especially in light of the wear and tear Lupus has already caused my joints.  I can, of course, always consult my running guru (a.k.a Dad) for guidance!  Who knows, a new category of posts may be in order to record my “running newbie” high jinks!

Harry Potter, Jesus, The Creator and Me

Yes, I was Harry Potter for Halloween this past year and yes, I went to Value Village and bought a 10 year old boy’s costume and YES, I wore it all day at work and walked proudly around the halls of the University of Manitoba with it.  And yes, my friends, I am THAT cool.  Now for those of you who saw the word “Jesus” in the title and are now worried that I am going to say that my Lupus Cerebritis caused me to be a “born-again Christian,” please calm down. The title is referring to some of the FASCINATING things that my brain was pumping out during the height of my “mania” in the hospital.  I would recommend that you all stop what you are doing, grab a cup of tea, turn off the music, plop down somewhere comfy and get ready for some mind-blowing brain talk.  You know how some stroke victims start talking in an accent from a place that they’ve never been before?  Yah.  THAT kind of brain talk.  

I am sure that you can all tell by now that I am a lover of the (well-done) good vs. evil epic.  Harry Potter, Lord of the Rings, Star Wars; they all stir in me the kind of excitement you see in some people’s faces as they watch a really bloody hockey fight or one of those extreme fighting matches.  For me, there is nothing more exciting to watch than a perfectly executed hand to hand combat scene – think Jet Li in the movie “Hero” or the battle in the 2nd LOTR movie (my favourite, by the way) or the magical duels in the Prophecy Room at the Ministry of Magic in Harry Potter 5 (the BOOK, not the movie).  Show me a man with a sword and I show you my heart.  Now THAT’s a real man.  Men with guns just don’t do it for me.  Anyone can pull a trigger.  Who do you know that can run for three days straight and then kill 300 orcs all by himself?  Yah.  I didn’t think so.  I, of course, am talking about Aragorn from Lord of the Rings, the character that exemplifies the goodness that we all strive for, the King that will return and save us all.  Now you would think that I would want to play the part of Arwen, his lady love, the tragically beautiful and magical creature that has stolen his heart.  Those who know me well will be shocked to know that no, I would not like to be her at all.  I would rather play the White Lady of Rohan, the woman he rejects, the woman who disguises herself as a soldier and cuts the head off of the darkest of warriors while standing above the body of her dead father. Yes, in the end, I would rather be holding a sword than holding the man.  And these days I have getting a feeling that perhaps I was a woman warrior in a past life.  I remember watching the Disney Movie “Mulan” for the first time and when the scene comes up where she cuts her hair off and steals her father’s armour, I remember getting this shiver up my spine and that my eyes welled up with tears.  The same thing happened at the end of the movie when she comes out of the palace and she watches millions of people bow down at her feet.  I recently borrowed the movie from my sister when it came out on DVD and my reaction was the same.  I have also been drawn to characters like Joan of Arc, I love anything connected to ninjas (mastering a martial art has always been on my “bucket list” and I LOVE “Kill Bill”) and Leonardo was my favourite Ninja Turtle because he was the leader and he had the swords (no brainer).  Now you can say what you want about reincarnation, but when you’ve actually experienced what it’s like to leave a body and then re-enter one again… well, it’s easier to believe that you’ve lived in more than one.  But sadly, I know I would not be cast as the beautiful and strong White Lady of Rohan, but in the role of Frodo.  Anyone who has watched LOTR with me (and I have watched it MANY times) can attest to the fact that I will complain about Elijah Wood at least three to five times each movie.  I feel badly for this, since I am now realizing that he really did do a great job with a very difficult character.  He really captured in his eyes the way it feels to be the “chosen one,” the fear, the loneliness, the anger, the eventual acceptance.  I would impatiently exclaim, “Alright already, you’re sad about it, we get it.  Just go and do it already.  Stop making everyone more sad than they already are.”  How insensitive of me.  

So what’s my point?  I naturally use the stories I like as metaphors for my own life.  I know it sounds silly, but it really helps me understand and get through a crisis.  When I was in the hospital in my manic state I took this to an entirely new level. I seriously thought that I was three different characters: Harry Potter, Jesus and The Creator.  And, no, I don’t still believe it, so you can all calm yourselves down.  I had my very first acupuncture treatment today and the doctor (who is just lovely by the way) asked carefully, “you don’t still believe that, do you?”  Come on, people.  I know I’m out of it, but in the end I always know that it’s just a story.  I have never taken things THAT literally.  Sheesh.

Ok, so with the Harry Potter scenario I explained the brain inflammation to myself by believing that we are in the part of story where Voldemort is inside of his brain.  I spent a lot of time “casting” my keepers in the all the rest of the character roles.  Every person fit perfectly, of course, which did nothing but encourage and inflame this illusion.

With the Jesus metaphor, I believed that I was in my 2009th reincarnation and that each time I reappeared on Earth, my disciples would come back with me, but I would always have “amnesia” each time.  The disciples would have to do everything they can to “remind” me of who I am without drawing out too much attention.  They’ve never actually succeeded or if they had, I would always die before any good would happen… till now.  So when I wasn’t asking my friends if they would be cool with being Hermoine instead of Luna, I would ask them what disciple they were.  

The Creator metaphor came up much less, but I do remember asking one of my keepers if he was “The Trickster,” a character in a very well known aboriginal myth.  I do remember going up to the white board and erasing what was on it with my hand and then using the excess ink to draw on the wall.  I remember watching in my head as my hands moved with amazing precision and speed.  Closer to the end of my hospital stay, I asked one of my keepers, “Doesn’t it kinda look like ancient aboriginal drawings that you see in caves and on the sides of rocks?”  My keeper looked at the wall and said, “Yah, it kinda does.  That part kinda looks like a fire… and there’s the smoke.”  “Yah, and this over here looks like a buffalo.”  We said nothing more.  I know I don’t have to explain why.  I made a hand-drawn copy of what was on the wall in my notebook and have it sitting here beside me, hidden inside the rest of the papers and messages I collected from my time in the hospital.  I was looking through my Dad’s old Archaeology Magazines (archaeology was my first dream career as a kid) and I came across a magazine with bright red aboriginal drawings and symbols.  It looks almost identical to the one I drew in the hospital.  You better believe that I haven’t looked at that magazine since.  Listen, I find this all fascinating of course, but it is also extremely overwhelming and scary too.  I’m sure you can all understand, but don’t worry, I will eventually take it out and take a picture of it and post it here.  I know you must be dying of curiousity… or maybe you just want proof.  

Ok, that’s enough for tonight. Writing that last part has affected me more than I thought it would.  I feel a bit queasy from it.  I wasn’t going to share this with you all, with the entire internet world, but I think it’s important when attempting to solve a mystery as complex as the brain.  It is scarier than I thought it would be, to be honest.  I have no fear regarding my disease anymore.  I know I am going to get through this, but diving deep into the darkness of my brain, to re-experience the trauma of my time in the hospital, that every time I look at some creepy message I left myself that I don’t even remember writing in writing I don’t recognize, I have to catch my breath as my heart starts to race and I must brace myself against the wall to calm down.  When I first came home from the hospital, I took one of those pictures that they put in picture frames when you buy them from the store and cut out the smiling face of the person in it.  For some reason, I wrote the words “You have three months.  Use your time wisely,” on the curve of her cheek.  For a while, I thought that the message was prophecizing my death.  My mom brought me back down to Earth by reminding me that I have three months of chemo, so that’s probably what I meant.

And that message doesn’t even rate on the scale of scariness compared to some of the ones I wrote in the hospital.  Sigh.  Frodo, indeed.

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.

Am I a human dreaming about being a butterfly or a butterfly dreaming about being a human? – Chinese Proverb

I am very “manic” today.  I would call it “chipper” but the 10 year old Elena didn’t show up today.  Nope.  Just the cranky, darkly explosive Elena.  She also cries a lot.  You wouldn’t like her.  I know I don’t.  It’s because I felt nauseous all day today, I guess.  I just didn’t have any energy in the reserves to hold her back.  Don’t worry, no puke, but I couldn’t eat very much either.  It was bringing back memories of the two months before I was admitted to the hospital for this thing.  Did I mention I lost a total of 21 pounds by the end of my hospital stay?  

Anyway, I was so tired today that I think I must have snapped at my beautiful, concerned parents about 50 times.  This one time I heard the footsteps of my mom in the hallway and I yelled out “I’m okay!!”  I scared her half to death.  She was probably just on her way to her room and not to mine at all.  Sigh.  I know I need to be home with them right now, but God, I wish that I still had my apartment on times like this; a place where I can hide away and protect my parents from being yelled at for nothing.  I won’t even go into my feelings about being a 28 year old woman living with her parents again, her newly retired parents who should be enjoying their lives.  

I try my best to be quiet on days like these.  I try to keep to myself, read, email.  I am finding that I need to do less emailing.  When I am feeling particularly manic or “hypercreative,” I end up writing long, intense emails to people.  Mostly to my favourite people, but sometimes to those I don’t know very well at all.  I think the latter is where I get myself in trouble and where I end up sounding as crazy as I feel these days.  Now these emails are always full of positive things and expressions of fondness and love, but I am sure the intensity of these emails are hard to receive, awkward even, for some and surely exhausting to interpret.  Great.  Just another way that I am hurting those around me.

When I say “crazy” I don’t mean to insult those who actually have bipolar hypermania.  If I have learned anything in this whole drama, it’s that mental illness is a powerful and horrible thing to have to live through, so much harder than what I have gone through physically with Lupus.  I only have to deal with the physical pain.  Ok, yes, all those with chronic illness also suffer through emotional trauma, but nothing like this.  The stigma, the guilt, the fear that comes out of having a disease in which you cannot control what you say or do, to never know what is to come out of you whether it be tears or screams or threats or joy.  To not know if you could potentially say or do something that would ruin the lives of those you hold dearest, to think that there is a possibility that you could physically harm them… to live with that in addition to knowing that the majority of the population think that you are doing these things on purpose.  That you’re not “trying hard enough” to stop doing and saying these things.  I have found myself thinking sadly of the mentally ill man who beheaded the young man on that Greyhound Bus not too long ago and of the young man’s mother.  How can anyone expect her to understand that the man did not want to do that.  That he is ill, that he was probably there watching inside his head, watching in horror as he did that horrible thing, helpless to do anything about it?  

All my days in the hospital and even now I am standing there too, in my mind, watching myself, trapped.  An outer body experience I guess you could call it, but I definitely feel like I’m still inside my head.  I watched everything, EVERYTHING, watched myself make an utter fool of myself, singing and talking nonstop and kicking walls and screaming and throwing things and threatening… I watched everything, everything except the moments when I left entirely.  Yes, there are whole days that I don’t remember because I literally left my body.  I guess I died.  Well, isn’t that what you call it when your conscious self leaves, when the only thing left is your outer shell?  The only difference is that she was still talking and screaming and throwing things.  But that wasn’t me.  I know it wasn’t.  Because I wasn’t there.  Now, if that isn’t the scariest thought ever, I don’t know what is.  But it wasn’t a thought people – it happened.

I came back of course, somehow.  I’d like to think it was the love of those around me that awakened me.  It sounds more beautiful that way.  The doctor folk will probably want to say that it was probably the mix of drugs that did it or something.  My brother says it was like I was on LSD, that I was on some psychedelic trip.  Perhaps I was.  At the current moment, I don’t really care.  What happened next was that I started to figure out how to control the different Elenas that sprung out of me from moment to moment.  It was slow, too slow for my liking, so I did have my share of outbursts, but I quickly learned that those outbursts would not get me out of that hospital room.  I forced myself to calm down, to be strategic in controlling my symptoms.  I figured out that one of my most obvious symptoms was talking nonstop, so I learned to be quiet and listen.  Eventually the doctors started to feel better because they were noticing that my behaviour was improving.  They started letting me out of my isolation room and eventually they released me, but they did it because they thought that the steroids were improving the inflammation in the brain.  When they decided to release me they hadn’t even given me the first dose of chemo yet.  And as I have established in my previous posts, my bipolar symptoms are largely unchanged at the moment because the chemo hasn’t kicked in yet.  They say it takes 6 – 12 weeks.  We’re on week four and a half, I think.  And yes, the steroids have been fabulous in eradicating my arthritic and costochondritis symptoms and giving me my appetite back.  I can’t even remember feeling this pain free for this long, but the memory loss, the bipolar mania symptoms, the OCD, the vision loss in my left eye, the brain “fuzz” sensation I feel around my head, the cognitive blips… they are still there.  And they were there when they sent me home.  I fooled them into thinking I was better.  I had to.  I knew I would never get better in there.  And they would never take my word for it alone.  They needed proof before they released me and through their scientific reasoning they must have reasoned that the steroids were finally doing a good job on the whole brain thing, or starting to anyway.  Or I could be wrong, who knows.  Maybe they could feel that I could deal with this at home now.  Maybe they believed in me instead. I think I’d like to choose that ending.  Did I mention that the steroids, in addition to making you an insomniac and a moon-faced freak, it also aggravates and brings out bipolar-like symptoms.  I think you’re starting to see that, I’ve got a lot of things working against me here.  And it’s not even the drugs that are the worst of it, it’s that essentially, I am in a battle with myself.  Constantly in battle with these distorted versions of myself.  I don’t even know which one is real anymore.  I don’t even know if a “normal” Elena exists.  Maybe she didn’t come back at all.

I had a moment of fear today that I am actually bipolar.  There is nothing in existence right now that can prove without a doubt that I have inflammation in my brain.  The prospect of knowing that I possess the actual mental illness, that I was not the lucky one who only has to deal with this for a short time, it was paralyzing.  And I still sit here paralyzed.  Paralyzed at the thought of it.  

I don’t think I’m that strong.