Calling it Out: Shame, Part I

It's been exactly a week since my sister started my surgery fundraiser.  That small action has called up a perfect Pandora's box of stuff for me to deal with.  I want to talk about it here for two reasons: 1) Naming an issue helps you move past it. 2) I said I wanted to help raise awareness about this disease.  I meant it, and chronicling my experiences might help bring awareness not just of the disease itself, but of the emotional side to it.

I have a lot of shame over this illness.  I don't think I realized how much until everyone I knew suddenly knew that I had it.  I've been thinking a lot about the sources of that shame and I think it stems from:

1. Not being believed for the longest time ("You're just being dramatic" "Everyone has pain sometimes." "Just drink more water." "Is something else going on in your life?  Should I prescribe Zanax?")
2. Not being healed yet, despite many efforts, many doctors, many dollars spent, and way too many medications and supplements.
3. The intimate nature of the disease.  This has been a huge source of embarrassment for me ever since I started having symptoms.  Do I want you to know I missed that church event because I was in pain?  No, because now you know that I was on my period during said church event, cause my period is the source of my pain.
4. Missing out.  A friend of mine once described me as an IOU.  Ouch. I should just muscle through this, right?  Make myself go to things even though I'm in pain?  I also look flaky because, besides missing events I say I'll attend, I now have a hard time committing to anything just in case that day is one of the days.
5. Being weak. I have five sisters.  I'm the only one with this condition.  I'm also the only one who's ever needed surgery for an illness rather than an accident. I.don't.like.this.

Those are the main sources of my shame, and here are the truths I've been trying to tell myself to combat that shame (you could be praying these things for me too - and speak them over other women in your life who have similar diseases!):

1. On not being believed: I don't need other people's approval.  I know this pain is real.  And I know that many other women have had similar experiences to mine in not being believed at all, and not even being diagnosed until they were 10 or 12 years into the disease. I am not alone in this.  One story I remind myself of is my friend's mother-in-law, Sara.  She's from an older generation where this disease really wasn't understood or tolerated.  Doctor's not only disbelieved her, they put her on anti-psychotics.  She became an alcoholic to deal with it all (the physical pain of endo and emotional pain of being thought of as insane). Finally in her 40s, a doctor knew what was going on, told her about it, and performed surgery for her.  After the surgery he gave her photos of her diseased organs and wrote in Sharpie all across the top, "Sara's NOT crazy!"  (And if that story doesn't make you cry, I don't know what will.)
2. On not being healed yet: God has a plan.  The outpouring of love I've had from friends, family, and perfect strangers since deciding to have surgery has been so healing to my heart.  It's a long story, but the love of others is healing me from several years of heart-breaking events.  If I didn't need surgery, I would never have experienced this outpouring.  God is good.
3. On the intimate nature of the disease: Women have periods and everybody poops.  GET OVER IT.
4. On missing out: I may have looked flaky all these years, but I'm not a flaky person. I am incredibly committed to everything I do.  In fact, I had to quit college on two separate occasions because of health and finances (which go hand-in-hand) and both times went back to finish, completing my B.A. in linguistics in 2010 at the age of 28.  
5. On being weak: We are all weak, we're all just pretending not to be.  We are all mortal.  We are all needy.  It is good to have a physical reminder that turns me to the Lord.  Not everyone has that blessing!

Alright, lunch is over and I have to get back to work.  Later this week I'll post again about shame in asking for help.

Good Reads: The Happiness Project

This + Stairmaster = me getting through my workout.  I highly recommend it!  Any workout reading suggestions for when I'm through with it?

This week I

• decided to have surgery, which I've been trying to avoid for more than half a decade
• made a video talking about my chronic pain and posted it publicly on YouTube for the entire world to watch if they wanted
• asked everyone I know for money for myself, and
• sat back and watched this unbelievable response of love and support from them

I'm a processor who journals or blogs her brains out about everything.  Just one of those bullet points listed above would require a month, at least, of processing.  And all 4 have happened within the span of a few days.  I'm a bit on overload right now, like that little colored spinning wheel that pops up when your Mac just can't handle all you're asking of it.  Can't journal.  But it's been great for working out. ;)

Unbearable grace

On May 11th I swallowed a pill called Pride
and asked all my friends and family to help me pay for surgery.
And I thought that was painful.
Then they started giving,
and my heart didn't know if it was soaring or sinking.
The love of others is a magnificent burden;
heavy in a good way, like a thick blanket in the middle of winter.
Or,
like a wave pulling you under and flipping you over,
making you realize how tiny you really are.
Or,
like that moment on the roller coaster...
the one where you tip the edge and start going down really fast.

Thank you for turning me upside down,
inside out;
for wrapping your arms around me,
and making me realize how good it is to need you.

A video of me...fun.

So I'm moving forward with the endometriosis surgery and my sweet sister Bekah threw together a fundraiser page for me to help me pay for the surgery (it'll be about $23,000 and I do not have insurance!).  She had me put together a little vid talking about my experience with endo.  So...here I am, at 2:00am, talking about endo. Enjoy:

I want to go to Romania.

My 5-year-old niece gets frozen yogurt as a special treat when she's been exceptionally well-behaved or has helped out around the house or whatever.

Her favorite is Yogurt Mania.

She always slips and calls it Romania.

"Can we go to Romania now?"

Yes.  Yes we can.

Previous experience and a blog that I had to kill before its time have taught me that blogging late at night when I'm emotional and tired isn't a good idea.

But what the heck...I'm gonna be stupid for a bit.

Twenty-four days ago I posted on the goodness of God.  Yesterday I was yelling at Him about how I feel unloved and don't feel I can trust Him.  The change came because Monday I decided to get surgery.  Surgery has been my dying option - I will try every road, every method imaginable in order to avoid going under.  But 13 years of pain and it only worsens.  I have little glimpses of getting better, like Lewis talks about his wife having several "miraculous" remissions.  I've had those too.  In fact, my entire year in Kentucky when I was 22 was characterized by zero symptoms.  And last month was brilliant - half the pain of usual (which is saying a lot when your pain is at a 9 out of 10), making me think that maybe my dietary changes were making a difference after all.  But this month was unbearable; I almost asked Mom to take me to the E.R.  The only reason I didn't was that I finally stopped throwing up...and I believe the only reason I finally stopped throwing up was because I sent out a mass text to everyone I know who takes prayer seriously and asked them to pray for me.

Then I praised God for keeping me out of the E.R.
Then I yelled at Him the next day for not making me better.

Have I written this here before? My income has been consistently below the poverty line for the last 5 years because of missed days at work from the endometriosis.  Have I written this here before?  I don't have insurance because of the endometriosis.  I know I haven't written this here before: those two stated realities mean that I'll have to take out a personal loan to in order to get surgery.

And the surgery is only effective 40% of the time.  So I'll be taking out, say, a $20,000 personal loan so that I can stop missing days of work in order to get a surgery that might not work.  In essence, I may be screwing myself.

I've never wrestled with God's love for me before, and it seems childish that I should start now, over an illness.  But I'm worn down, my friends.  Endometriosis pain is more severe than the pain of a woman in labor.  And I have four days of it. Every.month. And I've had 13 years of it. And I've tried every non-surgical remedy in existence, and I've considered getting knocked up like that one doctor told me I should.  Yeah,

"Hey baby,
I brought you into this world just to make my body feel better,
but I didn't really want you
and I didn't like your daddy very much either."

Yeah.
No.

I know other people suffer worse than I do.  I know I have it pretty good, considering I have a dad who's self-employed and is letting me live in his house rent-free and work for him while I try to sort out my shit. I know I am blessed to live in the U.S. with running water and flushing toilets...imagine the women who live in the bush and have endo...poor things.  I have a soft bed and a heating pad and filtered water and a cell phone with which to text my mom downstairs when I run out of said water and need more but am in too much pain to walk.  Really...in the land of disease and suffering, I don't have it so very bad.

But I'm tired.  And I don't understand.  And I feel like I have no future. And I feel like even my present is being stolen away from me.  And I wonder why God hasn't healed me or allowed one of these other methods to work.  There's so much I want to do, so much life to live, and my dreams aren't selfish. I know other people who have been miraculously healed from the worst of diagnoses.  Yet here am I, constantly moving in the direction of worse.  And I question God about it. And I know the right answers.

But
to know
is not always
to feel.

So...surgery.