Five Years Later: A Love Note to my Brain

Weeks ago, I marked the fifth year since I felt that strange push back, the crackled snap of separation from who I thought I was and that person who was doing things I never said she could. I took quiet note of this anniversary, the day lupus-induced inflammation took over my brain. I was going to acknowledge it here the way we all do when we find ourselves traveling the cycle of time, pausing to remember the pebble stones we lay down along the way. How far have I come? What have I learned? What will I do now? But I didn’t answer those questions, I didn’t want to. That day, it was enough to say, “yes, that happened.”

Today, an entire month later, I found myself belatedly marking the occasion with a love note to none other than my fascinating, enduring brain:

Dear Brain,

I still don’t fully understand what happened to you and I’ve come to accept that I never will. I don’t know how you managed to keep me, the real me, conscious amidst the chaos and for the times I was not, I want to thank you for protecting me and making me forget the worst of what “she” did. Thank you for being resilient, for allowing me to not only return to myself, but to uncover the parts I’d long forgotten. I’m sorry for leaving you vulnerable through my denial and meager self-care. I promise I will never do that again.

You are amazing and I’ve been grateful, so very grateful, every one of the last 1,825 days.

Love, Elena



(Image Source)

Voice From the Past

My first journal had a puffed, white, plastic cover.  A dancing bear stood frozen amidst cotton candy clouds, the body guard to my precious 11-year-old secrets: A list of what I got for Christmas that year,  musings on both the love and hate I felt for one boy, my favourable review of the squiggly slide in the McDonald’s down the street.  As I grew older, it took longer to finish each journal, the entries usually reserved for times of teen angst and heartbreak, but I continued to keep one even to this day, two decades later.

Last night, I wrote on the last of the pages of my most recent journal, one that I started almost exactly 4 years ago on April 8th, 2008, chronicling my struggle to regain my independence after two separate Lupus flares.  I was tempted many times during the last four years to start anew, to save myself from having to revisit the pages of the past.  At times, I could hardly go near it, but I knew it was important to finish, to see it through to the end.

I want to share something I wrote on October 14th, 2009 while recovering from Lupus Cerebritis in my parent’s home:

Don’t you dare give into fear. Don’t you dare.  Don’t let it take you.  Don’t let it break you. Hold on.  Hold on tight to who you know you are inside.  Don’t let go. You’ve heard the voice inside – your voice – your future self heralds you towards her.  She’s shining, remember?  Shining and healthy and YOU.  Don’t let the fear in.   Don’t let it come near. Don’t.

I continue to journal because I need to re-visit entries like this.  I need the reminder that you’re always your biggest ally, that there is always something on the other side of what you know, and that sometimes you need your past to help you realize there is a future.


So, my body woke up today and suddenly decided it was hungry.  I ate more today than I have in the last three days combined!  All I could think about was food:  My love of imperial cookies, my craving for chocolate soy milk, the dried mangos I should have bought on my lunch break.  And even as I write this, I keep running back and forth to the open box of cheddar rice thins standing seductively atop my kitchen table.  I can’t stop!

I take this as a good sign, of course, but I can’t help but laugh at my fickle, little body.  Two weeks of having to force feed myself and all of a sudden it’s like I’m on 60 mg of prednisone again and I’m eating everything in sight!  A total 360 overnight.  Remarkable.  This human body astounds me.

And apparently, despite not really being hungry at all, I have an intense hankering for fruit. Lots and lots of fruit!

I will, however, take a pause between my ravenous cravings and share with you that two family members of fellow lupies have contacted me in the last little while.  Both had or are currently dealing with their loved one going through lupus cerebritis.  I have offered my love and insights, but even I, as one who has “come through the other side,” feel helplessly inadequate in giving others’ hope and comfort.  This feeling was fully realized today as I pulled out my 2009 – 2010 agenda to verify a past programming date at work.  While flipping through the pages, I came across a mass of heavy handed scrawls and scribbles written over the weeks and months of my time suffering with lupus cerebritis.  Every inch of useable space was drowned in letters and words, some arbitrary, some not.  The colour-coded messages and narratives leapt off the page. I could almost see the harried blur of my manic hand fly across the open pages of the agenda.  Instinctually, my eyes fell shut and I gently flipped it closed and slipped it back into my desk drawer.  I couldn’t even look at it.

The journey is ongoing and I realize that even in my own story, I have no real answers, but I will continue to send out my love to everyone still suffering through all this strangeness.  I don’t know much, but I know that I am with you.

And just as it is with my surprise 360 tummy turnover, you never know when a situation will change for the better, but you always have to believe that you’re getting there, that you’re closer than you were before.

As for me, my friends, it is no surprise that I’m thinking about getting closer to a bowl of blueberries.  Bon Appetit and bonne nuit!

525,600 Minutes

August Long Weekend 2010:  The anniversary of my Lupus Cerebritis meltdown approaches. This year, a celebration is scheduled.  Not for myself, but for one of my oldest and most beloved keepers.  And just as she stood by my bedside a year ago, I will stand by hers on her wedding day (sans hospital gown, of course), as she enters into a new stage of life.

Shall I pour on the melodrama and claim that on that weekend, after a year of recovery, that I am doing the same?  Is it silly to think that I’m crossing a shimmering threshold into “better days,” or that I have been “reborn” into a different type of existence?  I can see the peanut gallery rising up to condemn me – “Arrogant little flake, isn’t she?”

I should know better than to hype things up the way I do, the way I cram forced symbolism and relevance on “anniversaries” and arbitrary events.  The thing is, I don’t quite know what to do with myself as I eye the calendar days inch closer and closer towards closing this particular circle of time.  It feels like I need to recognize it somehow, that I’m searching for closure for something that doesn’t end.  Recovery is forever.  Not just for me, but for everyone.

I have been on 2.5 mg of “Evil P” for over a month now, maybe even two… I stopped keeping track.  Incredibly, I have been making up every excuse to delay going off it completely.  I have a nagging feeling that there is indeed, a man behind the curtain, who could pull the plug on this beautiful, painless, and ultimately, illusory existence.  I guess I’m not feeling brave enough to find out… just yet.

And so, in about two weeks, I will surpass the “one year mark.”  I think it is best to quietly acknowledge it without fanfare or grandiose statements of what it means or where I “should be at.”  It may be best to do nothing, because there’s nothing to do, but to turn the calendar page.