Conundrum

Alright, disease update—that sounds fun, doesn’t it? Funny, I’ve shied away from talking about my disease for so long; shied away from referring to it as a disease, even. It used to be sort-of a side note in my life but unfortunately, right now it seems like a defining aspect.

Anyway, I’ve felt like crap for a while now and by a while, I mean ten months. For reals.  Turns out that Valley Fever on top of MS will kick your tushy.  And the not feeling well has just gone on and on and I’ve been grappling with the question of, what if this is just the new normal?  And I’ve had some MRIs done and I saw five different doctors in January, trying to answer that question.

I received good news and bad news.  The good news is that the Valley Fever is finally improving. The bad news is that the MRIs showed three new lesions.  And my neurologist wants to switch my medication. And I’m scared. And I’m pissed. And that’s why I’m writing. 

I really don’t want to tell any of you about any of this but I do want to figure out where God is in it all and if I can, that’s what I want to share.

So, I’m scared because the two choices of medicines that my doctor proposed look, on paper, like nightmares. Risky. Terrifyingly so.  And rather than switch, I want to bargain with God. Make a deal that if I just live a better life, maybe he could heal me.  I just was teaching the kids about what a conundrum is the other day: a problem that has no satisfying solution; this appears to be a good example.

And I’m pissed.  Pretty much at everybody.  I’m angry with my friends for not understanding—though I haven’t shared much about it.  I’m angry at my mom for not knowing what a lesion is eight years after diagnosis—even though I don’t fully understand the disease. I’m angry with myself for not taking better care of myself on a regular basis; at my body for betraying me.  And at God? I don’t know.  I did whisper-scream at him, in the bathtub, through sobs, the other day that I didn’t like Him. And then I spent the rest of the weekend asking forgiveness even though I knew He already had given it.

I really don’t think I’m mad that I have this disease. I think I’m mad because it requires that I trust Him.  And He scares me and I do feel angry when I think of a friend who lost a child and when I think about Job or Abraham and Isaac, which were all the things I was accusing Him of in the privacy of my bathroom, through tears.  Because I know there are no guarantees here.  No promises of an easy life—in fact, there’s a guarantee of the opposite.  A surety that we will suffer in this life.  And I kind of don’t want to suffer.  But more than that, I don’t want my suffering to affect others.  That’s the thing.  I have these children. I have this husband.  I have plans on how my mothering and wifehood should look and it does not include a disease.

But what if I don’t like God but I love Him?  And somehow, right now, that’s enough?  I need it to be.  The pastor went through Romans 8 today and He said everything I needed to hear.  And he brought up Abraham and Isaac and he proposed something I’d never considered.  What if God asked Abraham to sacrifice his son to prove to Abraham how much he loved God.  I’ve always thought it was God wanting to prove to Himself in this sort-of narcissistic way how much Abraham loved him but actually, God already knew.

So what if, in my life, God isn’t throwing this stuff at me to see if I’ll love Him through it but to show me that I will.  I can’t say I understand that concept completely but I do find it comforting and worth meditating on as I continue this journey. Things change.  I’m not in control. So I might as well get out of the way and trust.

The Dark

There's not being able to feel God's presence when we seek it and there's pushing His presence away when it becomes uncomfortable.  In both experiences, I believe His presence remains; it's simply a matter of how open we are or at times, maybe, God allowing us to sit in the dark.

I think, for me, sometimes (often) avoiding this blog is a way of avoiding God.  And the more I avoid the more I avoid. Meaning, like with any good habit, consistency is required.  For example, if I'm doing yoga every day, I tend to want to do yoga every day but if I take a few days off I easily forget the benefits and it's that much harder to resume.

My devotions led me to the book of Job this morning.  I don't know about you, but I don't find Job to be the most feel-good book in the Bible. I sort of inwardly groan when I "have" to read it.  This morning I read Job's words: "I am not silenced by the darkness..." Job 23:17 AMP.  And he wasn't. He cried out.  He said, if given the opportunity, he would complain before God--which in essence meant he was complaining before God and his laments were recorded.

I, on the other hand, very much want to clam up when life gets dark. I want to retreat.

In Letters to a Young Poet, Rainer Maria Rilke wrote,

"Everything is gestation and then bringing forth.  To let each impression and each germ of a feeling come to completion wholly in itself, in the dark, in the inexpressible, the unconscious, beyond the reach of one's own intelligence, and await with deep humility and patience the birth-hour of a new clarity: that alone is living the artist's life: in understanding as in creating."

Patience is not one of my strengths. Rather than sitting in the dark and waiting on clarity, I'll turn on every man-made light I can find.  Sitting in the dark sounds about as much fun as sitting in my feelings...and, I guess, is pretty much the same thing.  I will avoid that dark like the plague which often means I am inadvertently avoiding God's presence.  I want His presence manifest in cozy ways; in bright, cheery ways.  So, when Rainer writes, "Being an artist means, not reckoning and counting, but ripening like the tree..." I'm struck because I'm a reckoner; a counter. I like to  keep tabs, calculate, shine my own false light of examination on anything and everything and figure it all out. This is, first of all, working under the illusion that I'm in control but secondly, it's a means to avoid God's voice, His presence, His direction perhaps.  I'm afraid of the dark.  I'm afraid of what God might say to me there.  But what I'm also missing out on by avoiding sitting there is His comfort, His peace that surpasses all understanding.

Pain is unavoidable.  The dark is unavoidable.  God's presence really isn't.  I might as well invite His presence in when I'm forced to sit in the dark.

Interruptions

I can feel myself pulling back, wanting to retreat into that protective shell of isolation where I can guard my feelings and keep my struggle private.  I can come up with many reasons why I shouldn't share openly; some of the reasons are practical, I suppose, having to do with time and other necessities in life calling but I suspect these are a cover up for the truth that I fear being vulnerable. For goodness sake, I don't even like to tell the doctor how I'm doing.

But definitely, I'm in a strange season right now and trying to process through it.  Sometimes, coming here helps me do that.  I've been thinking a lot about a sermon I heard a couple of weeks ago on interruptions.  How God sometimes interrupts your life to get your attention. These last couple of months have been disrupted by my illness, the holidays and for the four, longer visits with their dad. Nothing has been normal.  Though what is normal?  I've heard that it's simply a setting on a washing machine.  I'll go with that.  I'm trying to listen to what God may be telling me, pay attention to whatever lesson He's teaching through this.  I'm a plan oriented person; a scheduling junkie.  I like routines.  We've had nothing like routine around here lately.  Children have been coming and going, school has been catch as catch can and for someone who abhors sitting around, I've been doing an awful lot of sitting around.

I've been forced to be a different type of parent without the structure of a full school day.  So, even sick, I think I've been more relaxed, maybe nicer, more apt to play than instruct.  We've watched movies and played games and baked.  I played basketball.  Maybe what I'm being taught is about quality time.  And trust.  To trust that this is all okay, that they'll be okay.  I worry about them, about what life with a sick mom must be like.  How could this be what God has chosen for them?  When my illness interrupts what I think is positive consistency or our days are dependent on how I feel, I worry that they're not going to get everything they need.  But then, isn't that me relying on my own strength?  And isn't God's grace sufficient, and His power made perfect in weakness?

More Powerful than Darkness

It was a crazy holiday season.  I suppose it always is.  Christmas already seems a month ago rather than just barely over a week ago.  I'd like to think I'm recovering from the stress of the season and now that it's a new year, everything will perk up and fall back into its normal place.  We're not off to a good start on that hope though.  I'm still feeling exhausted and the weather isn't helping.  It's been gray and dreary for the last few days and I need the sun.

I've been pretty much laid out for weeks, it seems.  David and I went out for New Year's Eve and came home before midnight because I couldn't make it.  I've noticed that even staying home all day, I can still get pretty darn exhausted and my new limit of activities seems to be one.  One measly, pathetic activity.  I can curl my hair and do makeup with the girls and then I'm done.  I can do a load of laundry and then I'm done.  I can clean a bedroom and then I'm done.  And I hate this more than I can express.  I hate having to move from the bed to the couch back to the bed.  I feel lazy and useless.

And I've been praying a lot about what this means in my life; how on earth my brokenness can be used.  How I can be a blessing rather than a burden.  I don't know.  The only thing I know is that when I look at it through an earthly lens it just sucks and it is a burden.  Only when I look through a kingdom lens does it make a bit more sense.  But my vision still is not that great.  I can't see it clearly. I just know that this has been chosen for a reason and that acceptance is the key to all my problems.

I want to isolate with this illness and keep it a secret and cry by myself in the bathroom and then come out with a tough attitude and act like it's no big deal.  I've been pretty quiet about Multiple Sclerosis in years past but as it continues to have its effect in my life I've found myself searching out other sufferers--their words and stories so I don't have to feel so alone.  I find myself wanting to know if there are others who are trying to homeschool through a chronic illness and I'm googling those search words and so I've realized if I want a voice, I can also be a voice.  I can provide what I'm desiring for others who are searching for similar feelings of connectedness.

What in me wants to keep it to myself, anyway?  Shame?  Embarrassment?  Fear of being misunderstood? Disbelieved? I'm not sure but I do know the enemy likes to silence; he likes to make us feel isolated and alone.  And those are lies.  We are never alone.  And when we share, we bring light and light is more powerful than darkness.