My heart, behind closed doors

I've become quite aware lately how inconsistent I am. I'm A.D.H.D. I'm wildly inconsistent in a thousand ways! Haha! But this is a different kind of inconsistency. I am inconsistent with how I praise God. I have been convicted lately of how negative I am. I keep spewing negativity about how I feel, about all the things I feel like I am missing because of my chronic illness, and I keep leaving the conversation at that. I started thinking back tonight about this blog (which is what started me writing again here.)

Here's something I wrote in my journal tonight: "When I was blogging during cancer, I spoke with hope, because I knew I'd be publicly judged by my words. I think about David's Psalms and how they often start out so negative, and then turn to praise. That is an area that would be so easy to do on a regular basis, if I could remember. Every sorrow just needs to be followed by two words: "But God...". But God is my hope. But God will be my strength. But God is whom I should be delighting. Though outwardly I waste away, but God I will praise."

It's such an easy thing to do, but I forget to do it so often and I let the negativity of my own hurts and longings generate more negativity and hurt and longing. I long for a different body. I long to be able to do what I see everyone else being able to do: work, kids, family, taking care of a home, being a good wife. In my mourning for what I consider to be a "normal life", I leave off the hope that I have so long spoken of here on this blog. And that is a problem. It isn't just a problem because God has called us be thankful in all things (not just the good things.) Rather, the real problem is that it poisons me in the process.

What a beautiful and healing thing it is to have joy in suffering. How much lighter is a thankful heart? When I want to be heard, when I want to vent, when I want to be understood, when I want people to know my struggle, am I bringing it back around to "But God!" Publicly, yes. Privately, no. And that must stop. So here is my confession to all 5-10 of you who actually read this. But even more, it is my confession to God, in this semi-public forum. I confess this sin my God, and I repent. But God, being rich in love will forgive me of my sins. I am so frustrated with this body... but God will make all things new. Lord, I pray that You would help me with having a spirit of joy and thankfulness. I have so much to be thankful for.

Weakness, to the praise of His glory.

So, this blog was originally meant to keep people updated on what was going on with my cancer.  I was supposed to come out of it better. Stronger. Hillary 2.0. Unfortunately, this is not what has happened. They always say whatever doesn't kill you makes you stronger. I've always thought that was a load of crap. What doesn't kill you can make you decidedly weaker. But this post isn't just about weakness.

There is a lot of weakness though. One of the best parts about cancer (how often have you heard THAT...) was that it had a name. People know what cancer is. They are familiar with what it does. It's a physical entity. You can see it on a machine. You can empirically measure it. It was like people finally understood: Hillary is sick. What many people, outside my close friends and family, is that I have always been sick. I started out sick. I pushed through life and did my best, but somehow everything always came back to the hospital in one way or another. Chronic kidney disease. Few people really understand that one, or what it can do to you. I've watched myself slowly become less of the person I wanted to be. I watched career options slip away, because I was not physically able to handle the demands. And during cancer, I watched the whole world carry on, while I sat behind my computer and communicated the only way I knew how. And now, 3 years out, I find myself going backwards again. And it sucks. I'm tired of being tired. I'm tired of feeling like I'm always on the brink of really getting sick. Because when I get sick, I stay sick for a good month, and then it's like I'm on probation for another couple. I have to say no to going out. I can't fully explain to people why 3 days of work a week is really difficult. I have no name that I can use that will help people understand that I'm not as healthy as I look. It's really frustrating.

I've begun feeling sorry for myself again. I've been praying and calling out to God, asking Him for the healing that I know Jehovah Rapha can bring. I asked my small group to pray for me last week as I just sat in the middle with everyone's hands on me, crying. Afterwards, I got into a conversation with a good friend and my small group leader. I kept lamenting how frustrated I was. I couldn't understand why God was allowing my body to wither like it is. I kept speculating this way and that way as to the why of the matter. Do I have too much pride? Is He trying to humble me? Maybe God has some amazing ministry for me one day and He's hamstringing me until then so that I will know that it is indeed He that is doing the good work. I was honest about how frustrated I was because there was so much I wanted to "do" for Him. But she stopped me there and asked me "What if all He wants you to do is to be for the praise of His glory?" That has kept me thinking all week.

Just be for the praise of His glory? What does that look like? My home group leader does pottery. She explained how some pieces she creates for no particular purpose other than they are beautiful and asked me if I was willing to possibly accept myself as that. She rightfully pointed out how much like Martha I have become, constantly trying to do instead of just BE. So while I would love to be useful, maybe I'm that little sheep who's legs need to be broken so that the shepherd can just carry it around. All I have is speculation. Speculation as to why I have to live like this. But it is a lesson that I am trying to learn. Am I content to just be for the praise of His glory? If I am homebound and I am unable to minister to a single person, am I content to be beautiful before my God and bring him glory, even if it's just the two of us? (Three actually. John gets to see me in all my awesomeness.) I want the answer to be a resounding yes, but I'll be honest... My heart says no. And that tells me that my heart has forgotten it's purpose.

Is that the lesson I am supposed to be learning? Who knows. There could be a hundred reasons. Or, my body is just a product of a fallen world. But even if it is, I know that God has not forgotten me, and He promises to work ALL things for good. But in the meantime, if y'all could pray for me, that would be awesome. As always, when I whine, I must end with what I know to be true: The Lord gives and the Lord takes away. Blessed be the name of the Lord. 

Bird's nest hair

A girl in my Bible study reminded us of an old adage that I like.  It is mainly in regards to how we deal with negative thoughts or feelings.

"You can't keep a bird from flying over your head, but you can keep it from building a nest in your hair."

Love the imagery.  This has been me today:

Awesome day yesterday

I went to the nutritionist yesterday.  She wasn't nearly as scary as my doctor had said!  She didn't say anything that wasn't just plain common sense, and/or good organic sense.  I got a little insight as to maybe why it seems like my mom and I seem to get every weird ailment out there and people like my dad and husband don't.  She framed it in terms of the body's ability to naturally sift out toxins.  Some people's bodies do it well, others do it poorly.  That makes sense.  Someone like my husband can eat pretty much whatever and his body can pick out the good stuff and toss the rest of the crap.  Me, my body's a hoarder.  It keeps everything, and then lives in it's own toxic cesspool.

It was a really great day yesterday.  I went to work, met mom for lunch while I got an iv saline bag, and then to the appointment.  After the saline bag, I was feeling so chipper and energetic.  It was awesome.  I need days like that to remind myself of reality: the reality that life and the future are not as overwhelming as they feel.  When I feel like I do today, I have to remind myself of days like yesterday.  Otherwise, I would believe all my negative thoughts. 

I felt pretty cruddy today.  I wanted to do so much.  I wanted to clean, and cook, and grocery shop, and do laundry.  I did succeed in cleaning the bedroom and making a birthday card for my in-laws, and that's about it.  The rest of the time I was sitting like a bump on a log thinking of all the things that I should be doing.  It's like the real me was trapped inside my brain going "OK, I'm going to do x, y, and z.  Ready?  1, 2, 3, GO!  Why aren't I going?"

But yesterday was good.  I'll think about yesterday.

Work, and an attitude adjustment

I don’t think I’ve had the best attitude about work these last few weeks.  I have felt so tired, somewhat defeated, and just… lazy.  Well, I call it lazy.  My family and doctors refers to it as “normal” or something crazy like that.  When my body feels sick, the whole world takes on this shadow of doom: everything is overwhelming, and everything seems to be an impossible task that I can only surmount by practically killing myself.  At least that is how it feels.  The future, even if it’s just 2 hours of work the next day, feels impossible, and I have dreaded it.  My attitude was along the lines of “I can’t wait to have an excuse to take extended leave”.  What a cop out!  It’s like I wasn’t even planning to fight.  I was just resigned to feeling like crap.  It was just a fact of the matter, a decided fate. 

But I feel like I have turned a corner today.  I realized something.  No, I take that back.  I remembered something today.  I really do love what I do.  I do.  I legitimately like my kids.  I can’t share too much about my students, for privacy sake, but I’ll share a little.  I have this one boy whom I suspect has had it drilled into him that he is stupid, stupid, stupid.  Every question I ask, he’ll start to say something and then stop himself and mutter “No, that’s probably wrong.”  A good amount of the time he isn’t wrong.  He just expects that he will be.  If he does give a wrong answer, or if he is just drawing a blank, he sits there and verbally says “Gosh!  I’m so stupid!” and other degrading comments about himself.  You don’t get that way on your own.  Someone has to have “encouraged” you to think that way about yourself.  I get to be that other voice.  (Well, I and the other teachers of course)  Every time he thinks that he’s wrong, but is actually right, I get to remind him that he needs to trust his brain, because it is a good brain.  I get to tell him how capable he is, because he really does have a good head on his shoulders.  What will I do if I don’t get to be the one telling him that week after week?  I’ll crumble on the inside.  I live for, and I love, being that person in his life.  And not just him, but the rest of the guys as well.  I have another kid that I’ve just recently discovered mainly thinks in pictures.  He isn’t autistic or anything like that, but he just has this mental block when it come to big science words.  We are now going through his Biology 2, taking notes via pictures (not an easy task).  We are going at like, a quarter of the speed that we technically should, but that is why this school is so amazing.  I have the freedom to do what’s best for the student, and ensure that he is learning, and not just shrugging my shoulders, and compromising the process to ensure that I can pass him along.  He is a challenge, and I love reveling in the fact that I don’t have to deal with someone else’s timeline.  I can do what is best for him. 

For the first time since my diagnosis, I have felt the fight welling up inside me.  Everyone kept telling me what a fighter I was, but I didn’t agree.  I felt pretty resigned.  But I’m not anymore, or at least not today.  I want to fight.  I have the best excuse in the world to take time off, and I don’t want to anymore.  I had pretty much closed my eyes, and prepared myself to take the punches, and merely endure.  But I think I’ve changed my mind.  I think I might want to swing back.  I might end up going down in the end (as in having to take a leave), but I don’t think I’ll go down without a fight anymore.  It was a good day.