The Soapbox Inquiry

Why am I doing this?  Why do I so willingly hand you my Lupus-related emotional baggage?

Because on September 14th, the fearless, euphoric joy that came with my Lupus Cerebritis induced hypermania flooded my veins, my everything, convincing me that I was a warrior for Lupus and auto-immune disease sufferers everywhere. I lifted my then 94-pound frame onto my little soapbox and proclaimed, “we have the ability to cure ourselves!  Join the revolution, the EVOLUTION!  Help me unravel the mysteries of the brain, of Lupus!  Be my medical team, my Watson, because Lupus isn’t going to beat me and I need all the help I can get!”  I posted it on my facebook page, practically yelling and screaming at people (most of whom were little more than an acquaintance) to come look, come read all the nasty little details of my sickness, come see how it destroys me, come see how it has saved me!  At the height of my mania, I even had designs for t-shirts in my mind, a script for a short video clip reminiscent of Canadian comedian, Rick Mercer’s, rant segment on his satirical news show on CBC, where I entice readers to my blog with a fast-paced, humourous, “motivational speech-esque” soundbite, ending, of course, with a shot of the back of my t-shirt which says, “you can cure yourself!”  I even had ideas about having “side events and projects” connected to the blog.  “Movie nights with E,” for example, where I would plan movie nights here in Winnipeg, perhaps rent out a local movie theatre, for the purposes of watching movies and documentaries that would help me in solving the mystery of what was happening in my brain or of how to live well with Lupus in general.  Readers who didn’t live in Winnipeg could rent these films on their own and could easily join in any discussions I started on my blog.  “E’s Book Club” was another idea, I even seriously approached a colleague of mine to create a documentary of my Lupus Cerebritis experiences.  I already had four video clips and an extravagant idea to send a preview to none other than Oprah Winfrey.  Feeling the utmost feeling of peace and tranquility, I swam joyously in my mania, believing that my blog would create a powerful community of individuals who would help me in this mystery-adventure story of preserving my life.  It was like a game, it was fun and challenging, exciting and exhilarating.  Being that I was on the highest dose of prednisone possible, my energy was at a level I had never experienced before, I felt like I could do anything, be anything.  It didn’t matter that I couldn’t sleep – I was whizzing through my 22 hour days as though I had slept for a lifetime the night before.  I had my arms wide open and I was giving the world everything in my “Lupus Life” after spending almost a decade revealing it to hardly anyone.  

I’ve always been a person of extremes.  I fit the bill of my designated horoscope with laughable perfection.  Yes, I am the Gemini personality who gets bipolar hyper-mania symptoms as a result of Lupus-induced brain tissue inflammation.  Lethal combination, no?  Painfully ironic, no?  Well, I do admit that it’s also pretty funny.  It also makes it pretty hard to figure out whether I’m just being typical Elena or whether the mania is doing the talking, especially nowadays when everything is much more subtle.  So this brings me back to my initial question:  Why am I doing this?  A few weeks ago, I surfaced the waters of my “mania lagoon,” finally realizing that I had spent almost two months thinking that my mental state was completely lucid, when in fact, my mental condition had changed very little from when I was in the hospital.  By re-reading all the emails I sent out and the writings that flowed out of me like a rushing river that had no end, I fell off my little soapbox, landing as though I had just fell off the top of the Eiffel Tower.  I am no longer the 94-pound energizer bunny of the recent past.  The 20 pounds I have thankfully regained has also come with the dead weight of my newly acquired mania-awareness, the “oh my GOD, I can’t believe I wrote that/did that/said that” ball and chain.  No wonder I’ve been living like a hermit these days.  I said I was living a “vampiric existence” in a previous post.  I suppose we could combine the two and call me a “hermpire” or a “vampit.”  Well, whatever reclusive creature I might be at the moment, ironically, I am still blogging.  I hide in my room, but you, my readers, and potentially anyone else in the world with access to a computer, can see me.  I’m still as exposed as I was when I was a chattering little imp dancing on my soapbox.

So, WHY?  If you’re so embarrassed, Elena, then just stop.  If you’re scared now, then delete all this.  Do it. DO IT!!

And holy hell, have I been close… but, holy crap, I just can’t.  I can’t because it would mean that I would be in denial again.  This happened to me.  My brain got sick.  It wasn’t my fault?  NO, it wasn’t my fault. I didn’t mean to do those things.  I didn’t mean to say those things.  I wouldn’t have done any of that if I weren’t sick.  It wasn’t my fault.  I’m sick right now.  I’M SICK.  

I’m healing. 

So, is it that I want you to heal with me?  I know I don’t want you to be sick with me.  I’ve let you catch glimpses into how weak I can feel, how defeated, how close I have been to giving up.  In my “awakened” state, this has been very hard for me.  I don’t know if I want you to know that.  I don’t know if you should know that.  Do I think that you will think less of me?  Why do I even care?

The truth is, I have no superhero pants.  I’m not Xena, Warrior Princess or the White Lady of Rohan or some amazon warrior woman, her armour shining in the blazing sun.  I’m just a girl who spent the whole day in her pyjamas, eating croutons like chips, shuffling around her parents’ home under a heavy fog of fatigue, napping intermittently while battling the incessant nattering of her brain fuzz and it’s constant mental chatter.  That’s the reality, that’s how my Lupus life can be without the aid of mythical metaphors and Hollywood characters.  

I found out this week that I have one more stop on the “Chemo Train of Love.”  In the meantime, “Evil P”  will be weaned off in 5 – 10 mg increments per week until I am down to 15 mg.  Once I am at 15 mg, my blood work will decide what comes next, but it will most likely be in the form of “Immuran,” an immunosuppressant drug.  Dr. H says she wants me to keep taking Plaquenil, the pills I have been taking for the last 8 years, and I will continue with all the other pills I am on to protect my lungs, ovaries and bones from the effects of the chemo and prednisone.  I am happy to know that I have crossed over into a new phase of figuring out how to effectively control and prevent Lupus Cerebritis from rearing it’s ugly head again, but I find myself increasingly anxious about the amount of prescription drugs in my body.  I received a phone call from the rheumatology nurse today, telling me that I should get the H1N1 shot, once the “hypo-allergenic” one comes out in November.  I was surprised because the info sheet for cyclophosphomide (chemo) says that I can’t have immunizations.  I was actually relieved when I read that because it gave me an excuse not to get the H1N1 shot,  an immunization that I don’t believe to be safe.  Furthermore, it’s another strange and mysterious fluid entering my already tired, bruised and inflamed body.  I am conflicted.

I also digress.  I was asking why I am writing this blog. I average 39 readers a day, of whom I believe to primarily consist of my keepers, curious Facebook friends, perhaps a random person or two and hopefully some fellow Lupies that saw my link on a Lupus Facebook Group.  I know… it makes me look pretty silly for freaking out about people reading my blog when so few people actually view it.  I do have to say that I have received some lovely messages from some very wonderful people; some strangers, some very close to me and some of whom I have not spoken to in years, who have told me that reading my blog has effected them in a positive way.  Some even shared their stories with me, a privilege I do not take lightly.  I have met brave, young women with Lupus and other chronic illnesses in this strange, internet universe, who want nothing more than to simply talk, to compare, to discuss.  I have discovered that the need to relate crosses all boundaries, geographic or otherwise, and that you do not need to meet someone to inherently know that they understand and support you.  That’s all we really want, us chronic illness sufferers.  We want to unload without burdening, we want to tell without having to say it all, we want to know that we’re not the only one, that there is someone else out there who I can look in the eye and say nothing, but they would know from the way I walked up to them exactly what I was feeling, what I was thinking.  

I write tonight because of those messages.  I write for my keepers, who encourage me to keep writing, who say they feel closer to me by reading it.  And yes, I write for myself.  It’s the bread crumb trail that I leave behind me as I navigate my way through this dark patch of forest, but not so I can backtrack to where I was, but so I can turn ’round and see how far I’ve come.

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5 thoughts on “The Soapbox Inquiry

  1. Hey
    Just thought I’d let you know that I am a VERY avid blog follower of yours and you are a very inspiring writter. As far as I’m concerned, you are wearing those super hero pants every day you deal with all this – even if they are under pajama pants today.
    ~Tanya (Lee’s girlfriend)

    • Thanks Tanya, for reading and for your comment. I like the idea of super hero pants under pyjamas – they can double as long johns!! :)

  2. OMG. Your mania very closely represents what I went through with lupus cerebritis. I was delusional — well after the completely psychotic week in the hospital. I did so and said so many cringeworthy things during that period that I still haven’t fully examined it two years later.

    • Hi, Stephanie! It’s always amazing to meet someone who has gone through the same thing. So glad that we are able to connect! I’ve met a couple of others online, but the I get the sense that there are more of us out there. How long did it take you to become fully yourself again? Were you also stuck in your head watching yourself do things that you had no control over like I was?

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