My Two Faces

I heard some bad news from my doctor this recently.  I hit one of my "No, you really can't ignore this any longer" markers--the pain was bad enough that I couldn't sleep.  I called in sick to work so that I could rest, take care of whatever parts needed tending, and hopefully squeeze in an appointment (along with any needed bloodwork, prescription pickup, etc.).  Somewhere in the night, I did start to feel better, enough to sleep until about nine (though actual time of falling asleep is undetermined).  I waffled for a couple of hours as to whether or not I should go to the doctor, because I don't like polling an expert if there's no evidence of a problem (like calling over Andy to fix my computer and the problem has magically resolved itself...).  Eventually, I made the call anyway.  

I have a new fistula, one of the fun quirks of Crohn's Disease.  

A fistula is a spontaneous connection between body parts.  One day, my rectum and an abscess were connected through a small, random path that eventually broke the skin; this one I've had for about two years now.  No doctor created this drain--my body made it, slowly and independently.  On the one hand, it's helpful because I would rather my body drain an infection rather than build up and make me feel sicker.  On the other, when it's irritated, I have a hard time finding a comfortable way to sit and have to change a pad frequently in my underwear, with where it's placed.  And here's the weird part--sometimes when I expel gas, air escapes out of there, too.  Yeah, weird and unpleasant, I tell you.  

So here are some of the basic facts:  

1.  Fistulas could connect about anything.  Intestine to bladder, gall bladder to skin, artery to vein.  Lucky me, with how my disease works, I tend to involve the rectum in some capacity, as this has been the area where my disease is most stubborn, where the cells are most diseased/irregular.

2.  It may or may not ever close on its own.  The one I had first has, again, stayed open for two years and shows no indications of closing.  

3.  There is little we can do about it.  Surgery near the rectum at all for me is considered a BAD idea--plus there's a significant rate of reoccurence.  Worst case scenario:  additional complications in potential surgery could result in an ostomy, which I would prefer to avoid if possible.

This new one though, well, it's in such a place that the doctor I saw was my OB/GYN.  She stuck a q-tip in to try and find where it was tracking, which involved some very loud swear words on my end.  All told, while I'm feeling better physically because the fistula is serving its purpose of draining...something, I'm emotionally a few shades of upset.  

There are so many unknowns with this.  We'll need to find out what it's connecting to to make sure there aren't any other problems we need to address, and otherwise I feel my chances are good that I'm stuck with it.  A second one.  In addition to everything else.  Another thing to monitor, another thing to potentially cause a problem, and another thing that I'm mad as hell about.  I accept that this is a condition of my disease; I have to continually re-accept the life adjustments that I must now make for it.

So emotionally (now and in many other moments) I have two warring sensations, my two faces:

I am strong, capable of seizing control out of a terrible situation and powering through.  I am resilient, standing up when I should be knocked down and finding another way to push back.  I have grit enough to carry on, refusing to let Crohn's take one more thing from me.

I am fragile, easily shattered, knowing that an ignored symptom could equate to a week's worth of hospital time.  I am depressed to the point where I do not want to leave the bed and feel all this time healing is wasted time, time stolen from me.  I am so, so angry, and that always seems to come out as more tears.  

Okay, I'll add a third--I don't understand how I can feel these two things so viscerally at the same time.  Like a porcelain doll in the Superman-pose triumphantly silhouetted in the sunlight.  An eggshell, able to resist astounding pressure due to their shape and yet cracked before you make it home from the grocery store.  A Non-Newtonian fluid.  I feel as though I wear both of these faces at the same time, that I exist as a contradiction in those moments I stop to realize it.  I can somehow pendulate between surrender and *insert warrior face here.*   

I'm very aware of my own mortality, of the impermanence of the world around me.  We as living beings are fragile, always a careless step away from death.  Some simply have more cracks than others, revealing that fragility baldly. 

Or maybe it's just fired clay, hardened by experiences to be both breakable but much, much stronger.  But that doesn't allow much flexibility for growth.

OR.  Maybe I'm rambling.  Maybe I am both of these things and don't have to make a perfect analogy (though it makes my inner English Major very uncomfortable).  I am just me, a slurry of emotions, experiences, and occasionally a bit of rationale; I don't have to make sense of all of me.  These components are all part of the mosaic of who I am.  

I find, though, that it's a very common impulse with grief, the need to understand it.  Coping by trying to find reason.  With my disease, I am always looking to understand it better, to wrap my head around why it works the way it does, to possibly predict and preempt future episodes through research.  That answers elements of why, but there comes a point where I need to accept that this is something that I will never completely understand.  It just is. 

This world is chaos.  People die or are hurt in ways that have no logic (there might be symptoms that can be understood, but the why is never truly complete).  I personally don't believe that God "picks" on people, pointing down with a large, ethereal finger that so-and-so gets a tumor and the Generic family has a miscarriage or Joe Nobody was killed by a domestic terrorist.  That's the chaos part.  I do believe though, that God can take these moments of chaos and turn them into something beautiful.  The cracks and the pain are still there--no denying that--but that's where some of the light can shine through.

...which means that my rationale for why we don't always understand is something else that I've worked to understand.

As it stands, I am oddly looking forward to a colonsocopy, where we might at least know a little bit more about the state of things afterwards.  And we--that being myself and those that love me--will continue to carry on.  There will be parts that we understand and parts that we will never be able to justify or ignore.  Who I am is fluid with familiar properties, one face of swirling colors and patterns.  The world will always be a certain level of chaos.  And we will all continue forward anyway.