Thursday, June 25, 2015

I'm Still Here

Post Soundtrack:  I'm Running by Yes

Today I was watching a movie that I find quite enjoyable.  It was only my second time watching it, but I was finding it just as entertaining as the very first time.  However, something significant struck me this time around, and I want to write about it.

The movie is full of young people doing active, energetic, daring things.  They are leaping, climbing, jumping, falling, challenging themselves physically.  At points during the movie, I've paused it to go get laundry, hauling it up and down the stairs.  Sometimes that can be difficult or outright impossible.  Today it isn't.  Today is a green day, a good day.  As I was heading up and down the stairs, it occurred to me that there was a spring in my step, a surge of energy that normally is lacking.  And all of a sudden it hit me.

That used to be me.

When I was younger, before Lupus touched my life, I was very active and energetic.  I was bouncy.  I would skip down the grocery aisle with a cart full of stuff.  I went hiking.  I climbed rocks.  I would jump and skip steps, up or down the stairs.  I would take the path less traveled because it was more fun and challenging, and gave me a new perspective.  I loved to run, to feel my muscles flex and the air expand my lungs.  (Just to be fair, I mostly would just sprint for the fun of it, not really marathon-type running.)  I did all of this for fun.  Because I felt like it.  Because it was just me.

Lupus has stolen this part from me.  Stairs are a challenge most days now.  I almost never skip under any circumstances.  I can't run and chase and race my son, like I'd always imagined I would.  I can't go hiking or horseback riding or rock climbing.  I can't even get to the rocks in order to climb them these days!  It's really rather depressing, and I've been struggling with accepting this new me.  Trying to turn away from what used to be and find the new me.

Only problem is, today I realized something.  I'm still here.  That me, the old, energetic me, is still here, inside.  It isn't a matter of "If only I could feel better, I'd find the energy to get into shape and be able to do that again."  It's a matter of, "When I have more energy, I find that part of myself again!"  It's there, waiting, lurking, still part of who I am.  The me that loved to do Tae Bo because it made me feel powerful... the me that laughed and danced and spun with my son for the pure joy of it.... the me that would step off the sidewalk just to step up on a rock and jump off onto the sidewalk again... that me is still here.  I am still me.

There are drawbacks to this discovery.  Part of me is really rather thrilled that I haven't lost that aspect of myself entirely, that it simply is buried under pain and tiredness and illness.  But the flip side of the coin is that it's a part of me I can only rarely glimpse.  It's hidden, buried deep, swamped and overwhelmed by this horrible disease.  It makes me resent Lupus more.  How dare it steal that part of me, that vital and vibrant part of me that used to shine so bright!  It's buried so deeply, my own son doesn't even know that it is a part of me.  If I suddenly was Lupus-free, he would be baffled by my energy level, by my bounciness, my goofy antics, my desire to be out and doing.  He doesn't associate the current me with the real me.  How sad is that?!

So there it is.  The inner me battling with the outer me.  How do I keep myself intact, whole, and sane under these conditions?  Not sure I have that answer just yet, but it's gotta be here somewhere, because there is an amazing surge of joy when I realize I'm still me, that what I identified as myself still exists.  That can't be a bad thing, right?  So I just have to find these nuggets of happiness and hold on tight.  I refuse to lose what I now know is part of me, even if I can't access it.  Just like I refuse to let go of being a horse-lover.  I may not be using these aspects of myself right now, but they are still there, they are still part of my identity, and I will hold onto them tightly as the treasures they are.

Saturday, June 6, 2015

I Am The Tiger

Post Soundtrack:  Unto the Burning Circle, by Andreas Vollenweider

I have been re-reading Jennifer Roberson's Tiger and Del series.  It's the first time I've gone through them again since my diagnosis, and I'm finding it somewhat self-enlightening.  Partly this is because several times these books describe excruciating pain, which I hadn't understood before, but do now.  But it was in the fifth book that I ran across a correlation that I had not expected to.  I wanted to share, to put my thoughts into words, so that others could see the truth of them.

Fair warning, I'm going to explain things that will be spoilers if you haven't read the book series and intend to.  This post is meant for those who either have already read the books, or don't care to read them.  This will indeed reveal things about the events in the books that you may not want to know ahead of time.

First, a little information about Tiger.  He's the main character, and the one I am going to relate myself to later on.  He began life as a slave, whipped and beaten and scorned.  When a sandtiger appeared and began to kill the children of the tribe he was a slave to, he took a sharpened stick as a spear and killed it to win his own freedom, but not before the sandtiger left its marks on his body, including four clawmarks across his cheek.  The slave boy took the name of the creature that bought him his freedom, and he became known as Sandtiger, easily recognizable by the marks on his face.  He left the tribe and apprenticed to become a sword-dancer.  He was a very good one, and won himself much fame, a name among men.  Later he faced off with a sword-dancer of equal skill, and ended up with a deep scar in his belly, a reminder of a dance he won but that nearly killed him.

He went sailing to find where his genes were from, and ended up on an island with a particular quirk of culture.  They had priest-mages that embodied magic, that could use magic.  However, it was believed that the magic drove them mad, and so they were shunned from polite society, relegated to their own island, where they became their own world.  They were known for being shaven headed, with blue tattoos across their scalps, rings in brows and ears, and magic in their blood.

Now Tiger had been having growing issues with magic, as he went about his travels.  He would feel uncomfortable prickles and creepy-crawlies when magic was near, and it would make him vomit if it became too intense.  When he came to the island, he began to suspect there was some connection between himself and those mage-priests, but he despised magic.  He hated it, wanted nothing to do with it.  But because of the way that society worked, soon he had no choice.

The mage-priests stole him away, kidnapped Tiger to become one of them, one of their own, to save the public from the danger his supposed impending madness.  Tiger was overcome by their magic, and with magic they removed all scars and indications of his history on his body, putting those on a corpse they left to be found by everyone else.  Then they left him to languish atop a spire, one he was expected to leap from.  Disoriented, befuddled, he fought with that impulse to leap, but eventually leap he did.  He survived, but met the world as a confusing muddle of new sensations.  Sound hurt.  Light was too bright, colors too fierce.  His magic had come alive, and it was uncontrolled, leaving him reeling most of the time in confusion.

As he stabilized, grew used to his new awareness, they began to indoctrinate him.  His old life was gone,t hey told him.  He was never again to be who he was.  He was not the Sandtiger any longer.  He clung to the one thing left him that connected him to his life before... the string of claws he'd worn since killing the sandtiger as a teenager.  In what was meant to be a final step in brainwashing him, his head was shaven, his scalp tattooed.  They cut the necklet of claws from him, then tossed them away one by one over the edge of the spire.  They then cut the pinkies from both his hands, robbing him of a vital key to the ability to wield a sword.  Brutally, they tore everything from him that helped him define who he had been before.

Tiger outwardly submitted to them.  He mouthed the words of chants, followed the rites, performed the tasks.  But inwardly he clung to who he had been, refused to let go.  One night he dreamed a vivid memory of the sword-dance that had nearly killed him.  When he woke, the deep, ugly scar once more carved into his belly.  His magic proved to be a means to regain himself, and he knew he could triumph.  Another night, taking a sharpened wooden stick with him to sleep, he dreamed the memory of facing, wrestling, and finally killing the sandtiger.  He awoke to a still bleeding cheek, now scored once more with four claw marks.  He also found he had killed the man who had worked hardest to remove his past life from him, impaling him with the rudimentary spear.

It was time to leave, whether they wanted him to or not.  He descended the spire and found most of the claws that had been thrown off the top.  He cobbled a raft together, and left the island to find and win back his old life.


So now I will tell you what I realized after I finished reading, the correlation that struck me strongly.  You might suppose that the magic was my Lupus, the source of all my trouble, and Tiger's.  But it isn't.  My pain is the magic.  The very thing I despise, but that helps drive me, make me stronger.  No, Lupus is the priest-mages.  How hard it seems to try to strip me of who I was before.  It piece by piece removes the means by which I defined myself previously.

My long hair?  Snipped short to prevent further agony of spirit.
A horse-lover?  What kind of horse-lover can't sit astride a saddle and ride?!
A gamer?  I no longer can pvp or raid in World of Warcraft.  It hurts too much.  How can I be a gamer when I can't even participate in the basic enjoyments of the game?!
My ability to skate?  Gone.  No strength, no energy, no gracefulness.  It's all gone, wasted away.
My devotion to being a Christian?  Half the time I can't even attend services!
A mother?  What kind of mother is sleeping when her child gets home from school?  What kind of mother flinches from her child's touch?
A home-maker?  My windows are filthy, my carpets are unvacuumed, dust is everywhere, and my hsuband does the dishes and cooking.  My son has to help me do laundry.  That's not the mark of a home-maker!
A wife?  When I force him to take up the slack of my inability to manage the house?  When he must bear the brunt of my tears and rage when I cannot contain them anymore?  When intimacy is rare, because either I am too tired or hurting too much?  What kind of wife does that make me?!

So many things that Lupus tries to wrench from me forcibly, and me without the means to stop it.  Just as Tiger was helpless before the magic of the priest-mages, so I often feel helpless before Lupus' ravages.  As befuddled and confused as he was, having to face a new kind of life, so I feel, seared by normal circumstances that no longer feel normal.  Just as Tiger felt despair and agony of spirit, so do I, as I watch what I was melt away.

But like Tiger, I choose not to let Lupus (the priest-mages) have its way.  I fight to retain what I can of who I was.  Some things I choose to let go, dross to be stripped away and left behind.  I do not need to define myself as having long hair.  That is not who I am, and so it is allowed to fall.  Other things, I redefine.  I cannot ride, true, but that does not mean I love horses any less.  It is the creature I love, not the action of riding.  I still can define myself that way, it still applies, and I refuse to let Lupus have its way in making me give it up as part of my heart.  And then there are the vital things to me, the things that truly define me.  These I hang on to doggedly, refusing to let my short-comings determine my suitability.  I can still be devoted to God, even if I am forced to stay home from services.  I have found other, additional ways to serve as well.  Instead of becoming weaker, I am now stronger.  My bond with my husband and child have grown stronger as they knit themselves to me to help hold me up.  I become more defined in our relationships because of my pain, my limitations.  Lupus will not defeat me.  I reclaim myself.  I acknowledge and work around the pain.  But I will not let it have its way.

Like Tiger, I daily pick myself up, cling to those things that make me who I am, and find my way back into the world that Lupus would keep me from (as the priest-mages attempted to keep Tiger from the world).  I refuse to accept the fate, the life that Lupus wants to insist I must have.  My life is what I make of it, not what Lupus makes of it.  Period.