A friend of mine spent years in the role of a foster mother to many different children. She once told me that there’s some act of boundary pushing that happens for many children after returning to the foster home post spending time with birth family. While I stood their listening to her compassionately speak about this process, thinking about how I would emotionally handle this cycle, she said something to the effect of, “but they (the kids) do it to make sure they are safe, and that the boundaries are still there- they just don’t know that that’s why. So I tell them, ‘you can hit the wall as much as you want- but the walls aren’t going anywhere- and you are safe.’” It was so wise. It’s a piece of wisdom that I still reflect on a few years later. But more than that- it was one of the most loving sentiments I had ever heard and so very maternal. She was saying that they could try to push the boundaries- and test my friend as much as they had to – but that my friend wasn’t going anywhere. How quickly, had it been me, might I have just scolded and dreaded visits to start the cycle over again – and all this mother wanted was to advocate and support because of her deep love.

I’m not the Lord’s foster daughter- but I’m pretty sure He says the same thing to me. To us.

After a successful round 10 of infusion treatments two weeks ago, and a decrease in pain (thank you, Jesus!), I landed in the hospital less than 24 hours after being discharged with some serious pain in my lower back and a freak mystery infection that took a week of unknowns and testing to figure out and treat. Though I know I have been more scared in my life, I cannot recall a time in my life that I wasted so much energy and consecutive time feeling scared. There were moments in those days in the hospital that all I did was watch the second hand of the clock spin in circles, and sit there in fear of the pain ruining my recently achieved “5” that I had gotten just a few days earlier from infusion. I wondered if all I would be getting out of that round was 24 hours. And I wondered if I had wasted those 24 hours sleeping in recovery post infusion, versus spending it enjoying the ability to feel the hands of people I love, and enjoying the energy to actually do something fun. Was my pain relief slipping through my fingers and there was nothing I could do to stop it? Heart breaking.

I’m a girl who loves and values words- but I had none. It felt like all I did for those days in waiting was worry, and wait for someone to walk into my room to check another vital sign, draw more blood, or give me another vague report. The worst part? I had no idea how to talk to God about it. It wasn’t that I didn’t want to- it’s like I couldn’t. I was so scared, so hurt, and I knew that He knew what the outcome would be. I could barely utter a word to Him because I was so afraid of what was happening. I became a child hitting the wall instead of being able to articulate my fears.

But do you know what the most beautiful thing about this was? While I sat there near hating myself for being a life-long Christian and a ministry leader who was now unable to talk to God about this- all I could feel was Him swooping me up in His arms whispering something quite similar to that of my mother-friend who I deeply admire, “you can hit the wall as much as you want- but the walls aren’t going anywhere- and you are safe.” While I sat there feeling guilty that I couldn’t “just” go to God, I felt so held by Him. This is where God really is like a parent. He can handle my raw emotions as much as I don’t want to always tell Him what I’m thinking until I’m past it.

Anyone else have a hard time telling God you’re scared, angry or disappointed?

I’m acutely aware that at the end of near every lesson I learn right now- there’s a theme of “I’m still not in control” and no matter how many times I learn that I need to surrender the control I do have to Jesus, I end up going back to old ways of trying to be in control again. True confession- it’s so hard to be out of control of my own body that it feels necessary to try to be in control of something, anything, in my life. It’s hard to have peace- and keep my hands open, no matter how much I trust that God is so good and isn’t going to leave me in my suffering. I don’t’ think God needs any assistance from me- but sometimes I wrestle with why God is allowing me to be in such pain when it hurts so bad. But God is kind to me- because each time I feel this- each time I try to grip to control or withdrawal from speaking because my feelings are hurt- He still shows up and waits for me stop hitting the wall. He waits for me to just cry and be raw.

As a teenage girl, in the early days of my pain, I was on a missions trip in Vermont where I sat in the back of chapel and whispered during a moment with the Lord, “Whatever you want. Jesus, whatever you want.” My young heart meant it then, and though my heart means that now, there’s more weight to it. I know more of what “whatever” can look like. And “whatever” calls for more surrender than comfort would like to hold on to. “Whatever you want” means “I trust you” and though of course I trust my God- there is an embarrassingly large human piece of me that still wants to hold to control.  “Whatever you want” to me means that I’m following Jesus no matter what and He can do with my life whatever He wants. That could mean I could land back in the hospital 24 hours after a good infusion, and it could even mean I may not see healing this side of Heaven. It’s not because Jesus “wants” me in pain. But because He wants me to trust Him with it- and trust that it’s going to be used for my good and His glory. So hard. But so good. Similarly, my prayers can also be, “You can heal me, Jesus. You can do whatever you want.” And an attitude of, “It’s your day, Jesus. You can do whatever you want.” He doesn’t need my permission to do what He wants- but my heart becomes in alignment with His when I whisper pray these words. Jesus is teaching me what it looks like to open my hands more and more to release control and trust that I can be raw and real with Him. He’s teaching me that the walls aren’t going anywhere, He’s not going anywhere, that He can handle my realness because He knows my heart already, and with Him I am safe. Even if control of my body is slipping through my fingers and I have to rely on medical professionals once again.

It’s not the point of this post- but to clarify- whatever freak infection lived in my body for the last several days is clearing and my pain is slowly returning back to the achieved “5” as well.

But even had it not- God is still good. And though I don’t have to be okay in the moment and want to learn to be as real with God in the moment not just after the moment- something that holds me grounded in the unknowns is repeating truths of who God is because that never changes. And what I know to be true is that God is good, and God is gracious and merciful. God is compassionate. God is loving. And even when God allows me to be in pain these truths don’t change. He hasn’t let go of me yet and I know He never will let go of me, or of you- no matter the fire we walk through- no matter how confusing the pain or circumstance feels. In fact, I normally find the worse the pain, the closer I feel Him near me. And no matter how many times I utter “please do something!” to Him- He hasn’t ignored me. I just can’t see the big picture.

God can handle our raw honesty. He already knows our hearts. I believe He wants to hear our prayers when we are mad or devastated even when all we can pray in those moments are groans. I believe He wants us to trust He’s near and He has a plan. But if you’re anything like me and feel like we can’t talk to God about hard emotions until they are “past tense feelings” – I think God invites us to draw closer to Him and that means in the moment no matter the emotion. He’s big. He can handle it. And more than that- I believe He doesn’t want us to process those feelings without Him.

So Jesus, “whatever you want.”
You can heal me. You can take away my pain and I will proclaim your goodness.
Yes, Lord, that’s my heart’s cry. For a “talitha koum” from your lips.
But Lord, you can keep me in the fire and continue to hold me close to your heart in the pain if you have plans to use it for my good and your glory too. And I will proclaim your goodness even still.
It’s your day, Jesus.
You can do whatever you want.

A few weeks ago- more people heard my story as my blog was shared and I nearly had a vulnerability freakout. Listen, this whole blog gives me a vulnerability freakout. But I feel like the Lord has asked me to share what He’s teaching me, and I’m grateful for your words and your care. In the last couple weeks, people approached me that had no idea I was in pain. It’s not that I forgot to tell them- I was just living vicariously through them by how they saw me: normal. Oh how far from normal I am.

But you know what? It’s also been so sweet. Mamas of kids in my ministry saying sweet words of support and sharing their prayers. It’s blessed me.

I have this problem where I feel the desperate need, if you don’t know I have pain, to keep it that way. Once you know, I’m not upset nor do I want to not talk about it….it’s just…I don’t know…there’s something about being able to pretend to be normal, that I love.

But my life is not normal.

Late last night I finally got in to the hospital for round nine. And when the wheel chair turned the corner down the hall I was immediately greeted with “hi Kate!”, waves, hugs and even a “your new home is 7118.” Nothings normal about hospital staff knowing your name or giving hugs or calling a room your new home. But it’s my normal.

I’m overdue for an infusion. Four weeks overdue. And this week has been a constant game of “move the goal post” having to wait a little longer….just a little longer….for real this time just a little longer.

But I now hear the sounds of churning and cranking. Signs of helpful medicine rushing into my veins. It’s a greater sound than an exhausted exhale of relief. This is not normal. But it’s my normal.

“Relief is coming” I remind myself through a whisper as the nausea begins, as the long first night marathon kicks off.

The days and weeks leading up to another infusion are always the achiest. It’s harder to get out of bed in the morning and have my feet touch the ground. My body begins to give warning signs that it’s time for another round-and my body begins to slow way down no matter how fast life speeds up.

And so I would find myself humming more, the melody of a song that’s given me strength. A dear friend reminded me to “sing my way out” because she knows those words are on a letter board in my living room reflecting the desire to sing truth about Jesus or to Jesus and draw near to Him for strength. “Sing your way out…..sing your way out….sing your way out…” I would remind myself in the morning, when I couldn’t seem to let my feet the touch the floor.

And here I am in the hospital saying the same thing “sing your way out….sing your way out…sing your way out” as I wait for the medicine to bring relief and as I wait to get past the first night sickness, first night pokes, first night hoops to jump through.

My neighbor on the left is a screamer- I hear her moans and screams through the walls. Immediately I’m getting a chorus of apologies from staff. But you know- she’s speaking my language. She’s my people. She’s one of us- pain patients -so desperate to get help. I get it. It’s not normal. But it’s my normal. My people are screamers. I happen to just not scream.

9 years ago today, exactly, I began my first ever hospital stay to follow a treatment plan for my pain. I remember on that first day having to get into a pool and wanting to totally scream but none of the other kids did- so I kept my mouth shut. After pool was physical therapy and they were not holding any screams back then. I remember sharing to a therapist that day “I didn’t know we were allowed to scream.” Here we are, 9 years later, and though I know I’m “allowed” to scream, the screamer next door is taking that job for the both of us. Instead I’ll keep singing as I pray “heal her Lord….and heal me. Just fix it Jesus.” Churn. Crank. Churn. Crank.

It’s my normal.

Two nurses come in while I’m definitely-maybe-totally going to vomit. The one is asking what color my nail polish is while I reach for the basin. The other I feel forever bonded to as she was there with me on my very worst and most vulnerable day -she’s come in for a hug and to say hello. It’s a party in the pain room of the girl who’s gonna vom. But it’s sweet. They ask for “Mama Nance” -when’s she coming in-swapping stories with each other of her being a mama bear and kindly yet firmly advocating or just why they love her. And I smile (still ready to vomit) because this weird life I live, we live, there’s a community here that we are a part of. As I begin to get sick this doesn’t stop the party. No, instead one grabs a cool rag and the other dumps the basin…and the party continues in 7118. They tell me they love my music I play and how coming into my room during the day is the room they need to spend the least time in but want to spend the most time in between the kind words, soft (worship) music, and the love of Mama Nance of course. “You’re kind even though your pains so bad,” one says “and you can still laugh.”

“That’s literally only because of Jesus.” I say. “I know biggest Christian cliche but it’s so true. My Jesus holds me together and I sing my way out.” We casually talk about church and how yes, pastors can have tattoos. (Papa George) And I invite them to give church try. And one says she might…..

They sneak me a philly soft pretzel from the break room and five bags of graham crackers when I asked for something to settle my stomach. “Uh..” she laughs as she dumps the snacks she scored for me “we just love you.”

I just smile. I love them too.

It’s not normal. But it’s my normal.

I have about 24 hours total of time here to love them like Jesus and the hours in between …about 5 days….are the ones I don’t remember well because the medicine does its job and I’m a little loopy. Those are the days I need them more. I can’t do anything on my own. Not even bathe or use the bathroom on my own. I’ll depend on these nurses in the in between in crazy ways. They see me at my worst but they still get Jesus. Because if I drop the ball because I’m too loopy or too sleepy—there’s a small army of visitors that picks it up and loves them like Jesus well for me.

This is my mission field.

My broken normal is my mission field. It’s full of broken bodies and worn out nurses who desperately need Jesus. And I’m so grateful that when they walk into this room they get a glimpse of His love because of the worship, the people and the time.

On repeat this week has been the old classic “my God is so big so strong and so mighty…there’s nothing my God cannot do.” Seriously. I keep repeating it. It’s my reminder that He’s not surprised. He’s not scared. He’s not stuck about a decision to make. He is big strong and mighty and there is nothing He cannot do.

He knows the day I’ll be healed this side of Heaven or not. He knows what my screaming neighbors deepest fear is. He knows my anxious heart about this round going smoothly. He knows. And you know what? There’s nothing my God cannot do.

So we pray for sweet neighbor lady for healing. And we pray for a miracle of complete healing in 7118 too. There’s nothing my God cannot do.

Can I tell you the scariest part for me of praying for healing for myself? The fear of disappointment if He says “not yet.”

Right now, however, I’m reminded that even if that happens- it’s not without purpose.

For my not normal life over here in 7118….there are still people who need to hear about Jesus and as long as I’m in pain, I have an “in” to give Him to them. Churn. Crank. Churn. Crank.

The other side of my life.

This is my normal.

I can’t even fully tell you what this is doing to me…
Maybe it’s stripping me of everything I’m really not.

The Lord has used pain to break me and remake me over and over again. I believe that. I feel it. I see it. I’m not who I was when this started, and I definitely never reach a point where it’s enough. I’m not implying that when the Lord heals me that’ll mean I’m done being refined- I’m saying that our Redeemer God has not let this pain be wasted.

I just finished “Round 8” of the week long infusion treatment for my pain two weeks ago. The last three rounds have been a true rollercoaster: Round 6 was incredibly scary and left me in just as much pain as I came in with….Round 7 I felt scared going into it not knowing if it I’d have that scary episode during titration again but didn’t and God was so kind to me and gave me a gift of being a “5” on the pain scale and zero titration issues…..and Round 8 I left the hospital with less pain then when I came in but not the same relief after another scary titration.

I’m exhausted from this season of pain. I’m exhausted from this new cycle I live my life in. I’m just plain exhausted.

Being in pain is for sure the most vulnerable part of my life. It displays my broken.
We all have it, I know that. We all have parts of life that we try to hide, try to trade, try to fix.

I fantasize about having my life together, and work hard to give everyone my best. I want to be a good friend, a good daughter, a good sister, granddaughter, cousin, niece. I want to be a good employee, a good co-worker, a good boss, a good director. I even want to be a good patient. I want people to be pleased with me.

Perhaps the bigger problem is that I also do this with God. I want to hand Him my life and my heart on a silver platter in perfect condition. I want Him to be proud. That’s really all I want.

That’s not how it works. That’s not even what He wants.

No, instead I’m like a child who’s holding some broken pieces with crocodile tears in my eyes and handing it back to Him saying, “I’m sorry- this is the best I have.” And it is kind of like the Lord grabs hold of my face and says, “let me fix this.”

I cannot hand it to Him on a silver platter. That implies I don’t even need a Savior. That I’ve got it covered on my own.

Pain is another thing I cannot control and it is incredibly frustrating. It’s one of the reasons why I know the Lord uses it for good even when it physically feels so bad- I see how He teaches me that I am not in control and that I need to surrender when my body physically can’t handle any more and I’m heading back down the halls of the hospital, yet again, to get help. Because not only can I not hand God my heart and life on a silver platter. I can’t even get my broken body together enough on my own. This is frustrating. I mean…incredibly frustrating to not be in control of your own body.

I stayed an extra night in the hospital this round after the infusion was over because I was having a few complications. I was finally unhooked from an IV and was able to walk stably. (is “stably” a word? You know what I mean.)

Around 2:30 in the morning, I couldn’t sleep and so I went for a walk. You know what’s weird about the hospital? It’s the only public place where you are in your pajamas or a gown or a robe and it’s perfectly normal. Also perfectly normal to have not showered in a couple days, or have hair in a messy bun, maybe your teeth got brushed today, maybe they didn’t. Maybe you’re wearing a bra, maybe you’re not. You may or may not be sporting a bag of your own urine with you. I mean it’s crazy- things that would never be normal if we were walking around outside the hospital. I pass by people and wonder who they are really- because I’m catching most vulnerable you and you are catching most vulnerable me—but outside these halls are you an executive?  A professional business man or woman? Are you normally the man who never cries who is crying now? Are you normally the woman in heels and make up who’s in slipper socks with unshaved legs? And what do you see when you see me?

And you know what else? What an odd place the hospital is that no one bats an eye at this stuff. No one cares what you look like or if you’re crying, yelling or having an anxiety attack. Sure, they’d never be caught this vulnerable at work, or at their kids’ school, or even at lunch with their best friends. But at the hospital no one cares one bit about that stuff- because there is life to fight for. All that matters is getting better and getting out to return to it, life, hopefully taking it less for granted, and maybe caring more about the loved ones to return back to and less about the put together appearance creating the illusion that all is well and always is.

So in the middle of a 2:30 walk around the cold, sterile hospital- mourning the loss of pain relief I feel I should have had more of that was lost during titration, I think about how much more familiar these halls are becoming, how much I frequent these rooms because of where I am at in this season of my life. I think about the fact that I know my Jesus will heal me some day (this side of Heaven or not) just like He’ll heal every one of these patients. And I wonder what I’m supposed to do with this broken, exhausting season. How am I supposed to leave the hospital broken instead of better? How am I supposed to go back to work, again, without much help of relief?

People ask me all the time how I cope with the pain. It’s the most cliché Christian thing for me to say- but I sincerely mean it: I can only live with pain because of the joy of the Lord and His grace. And the best coping strategies I have? I worship, and I laugh.

The most commonly searched for things in my youtube history? Worship songs and Jimmy Fallon videos. Fallon and “Friends” is what I watch the most of to laugh and worship music plays constantly in my car, on my phone, on my computer at my desk.

My word for the year is “sing” from that quote I wrote about a little while ago that “sometimes we sing something because we believe it, because we are sure and sometimes we sing something until we are sure.” It is my deepest desire to sing about the goodness of the Father because I believe it- and on days where it’s hard to feel anything good, to remind to myself of His goodness. And honestly, sometimes when the pain is so bad it feels like I can’t even find words to sing. But my prayer is that every day I would find a way to worship Him in my pain.

Natalie Grant has a song I love called, “More than Anything” and the lyrics say:

“Help me want the Healer more than the healing.
Help me want the Savior more than the saving.
Help me want the Giver more than the giving.
Help me want you Jesus- more than anything.”

And that’s what I whisper sung at 2:30 in the morning pacing the halls, and that’s my prayer today.

My hunch is God probably wants that prayer and my vulnerability a lot more than He wants that silver platter I fantasize about. So I will keep praying that prayer.

Maybe you need to remind yourself of that today too.

Lord, help me want the Healer more than the healing- help me want the Savior more than the saving, help me want the Giver more than the giving and help me want you Jesus- more than anything. Help me trust you more and walk life with pain not so afraid of how much it looks like I’m not together and honoring you as best as I can in the middle of the fire. Lord, I ache so badly and I do not understand why sometimes You allow these treatments to help more than other times. But I do know that You have never left me in this fight with pain. You have never abandoned me, even when it feels lonely. And You have not allowed one day of this to go to waste. I know that You are a Redeemer God who breaks me and remakes me to strip me away of everything I am really not and more of who You created me to be.

Lord, I will sing, even when it hurts. Even when it’s only a melody and there are no words.

I can still hear the sound of my CD player spinning the disc inside of it seconds after the “play” button was pushed. I can recite the track list, in order, of the “Praise and Worship” CD that I fell asleep to. I don’t believe the disc inside ever changed.  The same 25 worship songs played in my room, each night of my early childhood. It’s been quite a while since I heard that CD, but sometimes its songs come floating back like an old memory and get stuck (with joy) in my head for a while. One of them is “I Have Decided to Follow Jesus” and as quickly as I type the title, my heart sings “no turning back, no turning back.” That has been a promise of my heart since the early days of listening to that track. My heart, my soul, the deepest parts of who I am have decided to follow Jesus- no turning back.

And no ounce of pain can change that.
No turning back.

I laid in the hospital bed this round (#7) and hummed this song to quiet my anxious heart more than a few times. I feared another round going poorly. I feared the pain to that magnitude lasting another several weeks before another infusion could be possible to try to pull the pain down again. I sung it to remind myself of that promise I had made many years ago in a much more comfortable bed. The promise that no matter what, I would follow Jesus. But God gave me a gift, a beautiful gift of being a “5” this time with no problems during titration like there were last time. I am so humbled, so grateful, so moved by His kindness. I recognize even more now than I did in any other round that it didn’t have to happen like this. The Lord has been so good to me.

So, first, let me testify of His goodness and His kindness.
And second, let me thank you for your faithful consistent prayers on my behalf.

One of the primary reasons I started this blog this last year was because I felt like the Lord telling me that I needed to be more vulnerable in sharing what’s going on in the depths of pain. This was not to make my life an open book, but to give Him the glory and to testify to His goodness in the middle of something that just doesn’t feel even a little bit good. That’s not always easy to wrap my mind around, or understand, especially when life feels so hard. And like I’ve said before, sometimes I have to sing of His goodness to remind myself that even if He chooses not to heal me, spare me, or whatever the situation- He is still good. And sometimes it’s easy to sing from the rooftops.

The Lord sparing me from another treatment gone awry this time….easier to sing of His goodness. The Lord allowing last time for all the pain to come flooding back in a single moment…..harder.

But even in the times where I’m in more pain than it feels I can handle- the Lord has not left me. He has consistently reminded me that He is near to me. He has used many of you to do this too. Many people have blessed me in too many ways to count and been the hands and feet of Jesus in a time of suffering. And I am so humbled, moved, and grateful. The Lord has not left me alone in this. Praise Him. I could not….could NOT….do this without Him. I’ve watched other people in this much pain in the hospital who don’t have the hope of Jesus and because of that and because their pain is so bad- have no hope at all. And I do not know how they do it; how they get through a day. Because I don’t think I get through an hour without Jesus in this much pain. No actually, I know I couldn’t.

Just like that, we are already seven weeks out since round 7. I know it won’t be long before I go back in and the cycle starts over again. But within these last seven weeks, I’ve thought back to that promise I used to sing, “I have decided to follow Jesus –no turning back”. I knew as a little girl that God was calling me into ministry. I remember it. And so I’ve spent most of my life trying to give Him my all. The problem is-that’s been distorted into giving ministry my all instead of God. I believe this can actually be a slippery slope for many ministry leaders.

Let me explain: when my pain gets so bad that I have to stop what I’m doing and go home to lay down, I throw a private fit to God like a small child having a loud meltdown in the middle of Target. It’s bad. I try negotiating, I kick and scream, I whine (ugh- the worst maybe of them all. I hate the sound of whining.) because I feel like I’m being stopped from doing ministry. When really, if I remembered that God was in control, and I was here to give God my all- that my ministry would look like whatever He decided it would look like that day. Each day. But in those meltdowns, I childishly tell God that if He would take the pain away, I could do more.

It seems that He’s actually got this under control and knows better than me. (smirk)

I know there will be a day, unless the Lord heals my body, that I won’t be able to work like I even can now- and that sometimes really scares me. But I also know, that that doesn’t mean He won’t still be using me. In fact, when I have to end my day early or pain takes over that I just have to stop whatever I’m doing- He’s still using me then too.

When I was a little girl I knew God called me into ministry, but I didn’t know it would look like this: part of my life in the hospital, part out in a professional setting. I didn’t know that part of the ministry He’d call me to would be cheering on people with chronic pain who don’t’ know how to get through their days, laughing with nurses who need a patient who appreciates how hard they work, listening to the stories of hospital staff and patients. That’s the ministry God called me to for such a time as this, too.

So why, if I know God is good, that God is faithful, that God is in control- do I frequently try to grab a hold of the reigns and think it’s my job to be in control? That it’s got to look a certain way?

Do you ever feel this way? Like a passenger in a car who tries to brake for the driver with their own foot and imaginary brake? You can press that imaginary brake as hard as you want, but you’re still not in control. It’s rather wasted energy.

The promise I made as a little girl, and make each time I sing the song, is not “I have decided to let Jesus follow me” rather, “I have decided to follow Jesus.” Sometimes (often) that means being flexible, doing hard things, listening to the Holy Spirit’s prompting, and being brave. Forget RSD- that’s just what following Jesus can look like. But it’s also an incredibly beautiful journey.

I don’t believe God gave me RSD. I believe He can heal me, but I don’t believe He inflicted my body with horrible pain. What I know of God is that He is good, that He is never going to let me down, that He has not and will not fail me, and that He will use my pain for good. I also know that He has taught me too many lessons to count already through pain; for which I’m grateful.

Whether my next infusion goes as planned like this past round 7, or whether it’s scary like round 6…..
Whether my pain continues to get more aggressive, or God completely heals my body…..
Whether I spend more time serving God in the church or in the hospital….

I have decided to follow Jesus. No turning back.

 

 

 

Today is five weeks since I was discharged from the hospital after Round 6 of infusions. Once I’m actually in the hospital, it’s actually quite predictable. I’ll be admitted, and while someone documents the details of the most recent decline, someone else is trying (for what feels like an hour) to find a vein that will hold up just long enough until the PICC team can come get a midline in me. Then I wait for the medicine to come so the infusion can start- and once they turn it on, we titrate up on the medication and wait for relief to begin to come. Over the first twenty-four hours’ certain side effects will be brought on that make me more dependent on others for a lot of things. During the next several days the pain will get lower and lower- and usually lands somewhere around a “5” on the pain scale. There’s lots of rejoicing, lots of feeling, lots of happy tears, and always a “coffee cheers” on discharge day. Once they titrate me off of the medication, I return to a more independent, very grateful, Katie.

We aren’t naive. We say “good-bye” and “thank you” to everyone on staff who has helped me get to this pain level this time round- but we know we will be seeing them “soon”. Not one of us talk about that. It doesn’t feel necessary to go there, but it’s an unspoken look they give me of, “Enjoy each moment!” And we pray each round gives more moments in the in-between.

This is the other side of my life. And to be perfectly honest, each time they wheel me out, it’s a sobering experience- knowing that I was just wheeled in in excruciating pain- and now I get to leave a little better. Though this pain takes over my life…I am one of the ones who still gets to live a part of it on the other side of these walls. As much as I get frustrated that I have to go in so often….I do get to work. I get to chase after my dream job. And many in my situation don’t. So yes, it’s hard to have to go in and have an “other side of my life” but at least I get to come out and pretend for a little while- that my body isn’t failing me.

Something went very wrong this time.

This time I reached a “4.5” on the pain scale- which I’ve only hit once before, but still the lowest I’ve gotten. I was thrilled. We all were. I could feel the hands of loved ones. I could feel things beside pain. Which is always the weepiest thing for this girl who greatly appreciates physical touch. I was imagining what I could get done in the time in-between infusions. And I was ready to get home. They titrated me off over two days. The first night I went to bed so grateful for these results…and only a few hours later I was abruptly awoken to some of the most horrible physical pain I’ve ever felt. I could hardly call the nurse in time before vomiting from the amount of pain that was in my body. They put the medication all the way back up, undoing the titration- they called my mom-and we proceeded to wait for 24 hours for that pain to respond to the infusion and bring me back down to some sanity. In 24 hours- we’d get to Monday, when our full team would be back and could help brainstorm what happened. We just had to get to Monday.

The hours passed and though each step was definitely something, I was getting stuck between a “7 and 8” on the pain scale and I could not get passed it. I was trying hard to not be scared- but I’m not sure it appeared like that. Why isn’t it coming back down? What is happening?

Sunday’s montra became “Wait for Monday. The geniuses come back Monday.” Every time I’d feel so scared….”wait for Monday…”

When Monday came, not only was I not given a solution to bring the pain down- but I also found out that it wasn’t safe to leave me on the infusion any longer- and they had to titrate me off again. The pain team promised they would brainstorm what we were going to do- and made sure to let me know that this doesn’t mean I’m no longer a responder to these infusions because I had gotten to that 4.5. But, in the end, I was being sent home in too much pain. I was told that every hour someone would be in to titrate me down for the next two days, breaking only at night. And I prayed over and over again that God would do something each hour while the medicine was in me. It was an extremely long 48 hours. Monday provided no more hope than Sunday. In fact, arguably, I had more hope Sunday waiting for Monday.

I can’t write out for you what exactly took place in that hospital room when I was told they had to start titrating me off at 6:30 Monday morning. It’s too raw.

But what I can tell you is that God met me there in an intimate and beautiful way. And in the middle of my shock, fear, sadness, and uncertainty….I believe that God told me that I needed to communicate to the medical team taking care of me that I knew this wasn’t their fault and that I knew they were not doing this to me- that I need to do my part to help them be released from that feeling. And that I needed to tell them that this isn’t okay and that I’m grieving and they are going to need to give me space to grieve. And then it became quite evident to me that in the next 48 hours I needed to grieve with these two things: spiritual truth and space to wail.

My dad was with me when we got that devastating news. Typically, if he had said, “what do you need?” In the midst of devastation, I’m not sure that I would know- but I knew exactly what I needed, “spiritual truth and space to wail.” He asked me a great question, “What does that look like for you?” And God brought two people to my mind faster than I could think…who ultimately would be the best people to do that. In our time of grieving- with many loved ones praying that the Lord would bring the pain down more in the remaining hours of the infusion- the Lord kept our grieving hospital room intimate with only my parents and these two women that God brought to the scene. One who I felt would bring spiritual truth- and pretty much was only able to be in the room long enough to do just that with so many disruptions. So she left behind cards that were read to me over and over again in the hospital with verses and characteristics of the Lord. And one who, just after they stopped titrating for the night, came in, met me in my deepest pain and wailed with me in that dark hospital room. What an act of love.

I woke up the next morning with no change. And by the time they completed the titration and turned off the infusion-I was left at a 7. There was nothing to say….nothing to do. We all kind of just grieved. But I don’t think I will forget anytime soon, the moment when they turned the machine off….and my mom just climbed in the hospital bed with me, and held me- both crying…both very confused.

It was honestly traumatic.

The disease is aggressive, so we need to be more aggressive. I don’t know what that all means. But I know that the pain team has been meeting and strategizing, and since I’ve left the hospital we have connected, debriefed, brainstormed, and started two new medications until figuring out when they’ll do the next infusion to “try this again.” Which, honestly, used to be so hope-filled, knowing that my pain would be lessened. And now, it’s kind of scary.

I’m not okay right now. And that’s scary too. I’m grieving my pain being more aggressive. I’m getting frustrated with things being hard to do in this much pain like driving, socializing, working, serving. You guys, I couldn’t set the table for Thanksgiving without having to sit down after and recover. I don’t know what’s happening next- and I have to reign in my mind often (daily) from going too far down the road.

This time I left the hospital very differently. I left with more questions than answers. I left with so much fear. I left not sure how to go back to normal life with this much pain. I left not being sure how to be “normal” when I feel far from it. I was about to re-enter the other side of my life…the side I spend more time in…and I didn’t even know how to do it. The last 35 days I have woken up every single morning and said, “I’m going to need You to get me through this day because I cannot.” And every day He does. Though, most days, I feel like I’m pathetically crawling to the end. If I’m not at work, most likely I’m in bed. Sometimes I’m going to sleep for the night at 7 because my body literally cannot handle it. For the last 3 of the 5 weeks, I’ve not seen a number lower than an 8 on the pain scale.

But the Lord has been so good to me. That is truth. He is carrying me through each painful breath, each fear, each moment, each obstacle. He is showing up beautifully, and I’ve been journaling the ways that He has used so many people to remind me that He’s near. If you have sent a card, made a meal, helped financially, sat and listened to me, been the unexpected person who saw me cry that day and survived a potentially awkward moment, held my hair while puking from new medicine side effects, pointed me to a verse, song, podcast….thank you. God has used you. I’m being encouraged to not stress about getting thank you cards out fast which is against everything in me- but I’m so tired that it’s hard to. So please hear my deepest “thank you” and sincerely know it means so much to me.

I know the Lord is not surprised by this; though I am. I do not understand what is going on. But I know that He is not finished yet. I know He is going to use this for good.

One of my favorite lines recently has been, “Sometimes we sing something because we believe it, because we’re sure. Sometimes we sing something until we’re sure.” I heard it while listening to a live version of “King of My Heart.” This is said in the middle of the song, when you think it may be over…but it precedes about 4 minutes (I’m not exaggerating) of singing “You are good….you’re good….oh….You are good….you’re good…oh”

That’s my encouragement to you today. I know I’m not alone. Maybe you’re not an 8 on the pain scale because of RSD…but you might have another kind of goliath to face: financial stress, depression, medical monsters, anxiety, pain of miscarriage, pain of wanting to be married with babies while you’re feeling very single, caring for aging parents, caring for hurting children, trusting the Lord with your loved ones who are an ocean away, and that list hardly scratches the surface….

No matter what you face- whatever it is that feels too hard; join me in singing “You are good….you’re good….”either because you are sure it’s true….or sing it until you believe it’s true.

Though I know that the Lord is good, sometimes I sing it because I believe it- because I’m sure. And sometimes, when I’m throwing up from the pain being so bad or from new medication side effects, or sometimes when I don’t know how I’m going to get out of bed let alone do my day….I have to sing it until I’m reminded that I am in fact sure.

Nothing…absolutely nothing…feels good about this pain.
But the Lord is so good that I can trust Him despite the pain.
And you can too.
He is good. He’s good.

“Even to your old age and gray hairs I am he, I am he who will sustain you. I have made you and I will carry you; I will sustain you and I will rescue you.” Isaiah 46:4

I have been excited to return to Maine, to a cabin in the woods- the perfect Sabbath escape, since the day I left it 365 days ago. Honestly, I think I started planning for it on my drive home last year. I thought I planned it perfectly in line with when my pain would still be feeling strong effects from the most recent infusion. But, this disease had other plans. I’ve had to bite my tongue on multiple occasions to not mutter under my breath, “of course.”

As the pain started to rise, and it became clear that Maine was not going to be a possibility for me this fall, one of my dearest friends and Sabbath- companion, came up with a closer to home Sabbath option to create some sacred space before the next infusion and still take some quiet time to sit with the Lord. I could not be more grateful. (Thank you Shel, and thank you sweet nanny-fam who made this possible)

My family has been coming to this beach since my grandmother was a young girl. It’s a family tradition. Every year, our whole family: grandparents, aunts, uncles, and cousins- we all come to this beach and spend a week together. I have a sweet association with this beach. I’ve jumped the waves of this ocean, filled buckets with it for sand castle creations, stuck my feet in it while sitting on beach chairs with my family, and danced in it. There’s something carefree about the beach. There’s something about this place that makes me feel a little more like myself.

As an adult, I’ve gravitated towards the beach to rest with the Lord. It makes me feel closer to my Creator when I sit or stand, barefoot, in a part of creation that I truly find incredible. I know that we don’t need to meet somewhere special to connect. But doing so feels like a piece of me is home. It’s a different kind of comfort.

So I dragged my weary body onto the beach. I got to the sand, I took my shoes off, as though I was walking on holy ground, and planted myself on the rocks to watch the ocean for a little while. The repetition of the waves, the deep breaths of salty air, the sound of the water, it naturally began to calm my heart to a place of stilling it before the Lord. For a short time, I shared the rocks with a woman whose port and scarf around her bald head struck me with a deep sense of humility. Her daughter was my age. And she proceeded to make her mom laugh as she attempted to do cartwheels (consistently falling) and chase seagulls like a young child. For a short while, we sat together on opposite ends of these rocks, watching the water and it reminded me of a scene I read about often. It reminded me of our own little Pool of Bethesda. Two women sitting by the water, in need of healing.

I’ve sat by Bethesda before. I know this story well. (You can find it in John 5:1-15) In some ways, I feel like I live it. Can I tell you how surreal it was to visit the Holy Land as a lame woman? To be by the Pool of Bethesda and wonder if several years ago, I would have been found lying beside it, hoping to be well. It was especially meaningful to be there with two of my professors and friends who also are in desperate need of healing.

I need to pause for just a moment and say that it is a miracle that I could even go on this trip –and though I do not regret it one bit, if I knew what it would do to my pain- I absolutely wouldn’t have gone. I could not have gotten through it without these friends in my pictures- Doc and Rick, as well as Aaron and Caitlyn. Honestly, I could never thank them enough for all they did for me on this trip from holding me up while I was unable to walk, lending their arms when I needed help because the pain was so bad, holding my hair when I was getting sick from pain, and making me laugh when I felt like crying. I love you so very much.

The man in the account in John 5 has been an invalid for 38 years. Thirty-eight years. Don’t let that seem like just another number the next time you read it. 38 years of his body not working right. When Jesus approaches him, He asks him if he wants to be well and heals him. But the man doesn’t recognize Jesus, and later, when asked who made him well…he didn’t know. The NIV version actually says, “The man who was healed had no idea who it was…” Later, Jesus reveals who He is to this man.

I was blessed with 13 full years without pain. This November I will start my 26^th year of life and my 13^th year of pain. You know what’s so crazy…and hard? That means this year will be the year that I’ve been in pain just as long as I’ve lived without pain.

Jesus, whether it’s 13, 38, or 70 years….may I recognize who you are as I wait for healing, and not be distracted by telling you what all I’ve done and why when I’m asked if I want to be well.

Sitting by this water was me coming to the Lord begging for healing. Anyone who has asked what the highlight of my summer was, knows it was, “feeling the ocean.” I hadn’t felt it in 12 years, but this summer our annual family vacation fell just after an infusion and I was able to feel it. It was incredible. Here I was, almost four months later, and as my feet felt that water- I felt nothing but pain. I danced in those waves this summer and now I cannot feel them.

Who knows what this woman sitting on the rocks was thinking, but I was thinking about waiting. Waiting for healing.

I’m going to take a guess that most of you know what it is like to wait for something. Waiting for healing, waiting for a dream to come to fruition, waiting for an acceptance to your dream college, waiting for a “yes” to a job you’ve applied for, waiting for a baby to be born, waiting to be reunited with a child or loved one who is in Heaven, waiting for change, waiting for God to answer your prayer…I mean, the list could just keep going.

I deeply desire to wait well (note…desire). I don’t think that waiting well means not grieving or processing real emotions- I think that’s actually very healthy in the waiting. Even now, I’m waiting to go back in for my next round of infusion and I can’t even to seem to be chill about this. I think that part of the reason why it’s hard to wait well is because it’s easy to lose your focus. Right? I can’t be the only one whose mind works like this:

Focus on waiting well…focus on waiting well…focus on waiting well…it’s hard to wait…how come so-and-so doesn’t have to wait…you know what’s annoying? So-and-so posting about what I’m waiting for on social media, while I don’t have that…what am I not doing right?…I should try harder…I’m not getting what I’m waiting for because I’m not doing enough…I’m not getting what I’m waiting for because I’m not enough…

Woah. Woah. Woah.

I love this quote from author, Ann Voskamp, she writes,

“Whenever I forget, fear walks in.”

Waiting is hard enough; there’s no room to forget, because there is no room for fear in the waiting. There’s enough of that already.

What a discipline it is to focus in the waiting. That is so unbelievably hard, that I can barely write it. It feels like I could just tack that on to the wandering train of thought, “I’m not getting what I’m waiting for because I’m doing enough…because I’m not enough…because I don’t focus enough…” This isn’t a shame game, this is a reminder: if “when I forget, fear walks in”….then, when I remember, peace tells fear “no thank you.”

That’s what I’m after. I’m after waiting well. I’m after keeping my eyes fixed on Jesus…and to be honest, not because when I do that then Jesus finally answers my cry (maybe, but not necessarily). I do it because keeping my eyes fixed on Jesus helps me remember His faithfulness, and why I don’t need to be afraid in the waiting.

It’s amazing how quickly I forget.
But it’s beautiful how much faster God gives me grace and helps me remember.

Lord help me not to forget what you’ve done for me. Help me focus on you in the waiting. Meet me in the waiting. Meet me in my grief.  Help me cling to your faithfulness, and wait well.

“Wait for the Lord; be strong and take heart and wait for the Lord.” Psalm 27:14

Who do you trust the most? Who are your trusted few?

Maybe they are the ones who see unfiltered you. Maybe you pick up the phone to talk to them first because you know no matter what you say- it is safe with them and they won’t judge you.

How do you determine if you can trust them? Is it because they have proven before that they are safe? They have caught you in a vulnerable moment and responded well? You’ve seen how they interact with others? Think about that for a minute: how did your safe people, the people you deeply trust, become trustworthy to you?

It’s incredible how fragile trust is. After a while of trusting someone, it’s probably rare that you would ever find yourself worrying about that person with your thoughts- until something happens that shakes you, and that trust is seriously damaged. Even if it’s an accident- sometimes that trust is hard to fully build back up.

When your body is broken, you rely a lot on a doctor. This can be very scary because there is no time to decide whether or not they are trustworthy- grabbing coffee and listening to their track record on trust or starting with seeing how they handle the little things you say isn’t really a possibility. You jump. You get vulnerable. You see how they respond. You pray it’s well. And if it’s not- you decide if it’s worth staying or if you have to find another doctor in your area that specializes in your rare disease….if there is one. Sometimes, there’s no real choice.

I have had a couple doctors I didn’t trust. I have had some doctors who I trusted to do their job but would leave it at that (their bed side manner wasn’t the best). I had one that I thought I could trust, but couldn’t. And a few who I really trusted. Blessed am I, that I am currently with one I trust more deeply than any doctor I have ever had: and he specializes in the disease my body fights every day. Praise. The. Lord.

I don’t take this for granted. I know that many people don’t fully trust their doctors, but need to stay with them. I am so thankful that while doing a treatment that is rather intense; one where I’m very out of it and under the care of medical staff- that I can rest assured that my doctor is the one in charge- the one who is calling the shots, making sure everyone’s doing their job, and that we are pursuing the goal. I can rest because he’s in charge. I can rest because I trust him.

Trust is a huge part of dancing. There is safety in dancing alone- you are in control. But there is beauty in dancing with someone else- and when you trust them- my word is it even more beautiful. When there is trust, you’re not worried about them dropping you, how they lead, or what their next move is. And not only is it beautiful to be a part of –it’s also beautiful to watch. Have you ever watched a dance between a couple- whether the relationship is personal or professional, where there is trust? You can tell because it’s smoother- and far less awkward. Having trust in your partner, loosens the grasp of control because you know you can trust the other person to lead.

Dancing with the Lord pushes me to loosen my grasp of control and put my trust in Him to lead. Trust and faith are commonly used interchangeably – but I see a difference: faith is something you have- a confident belief. “I have faith that God can heal me.” “I’m praying my faith becomes like Abbie’s and that I can have faith that God will heal me.” Trust is something I do. I place my trust in the Lord. I can trust that He has my best interest in mind. For me, having faith in Him is why I can trust Him.

Today, we can read story after story in the Bible of men and women of faith. We can read stories of people trusting the Lord, and accounts of why He is trustworthy. We have examples. And to make it even more personal than that? We can see story after story of other people in our lives who have done the same with the Lord and the Lord has been so faithful. I’m thankful to be in a church where we share stories of what the Lord is doing in our lives, naturally. And I’m excited for my home-church that is putting an emphasis on “Jesus stories”- stories to share with one another of how Jesus showed up in their lives or in something they witnessed. Sharing stories like these help us see what a good, trustworthy, faithful God we have. Stories like these help us (or at least, help me) loosen the grasp of control and lean in more while dancing with the Lord.

Proverbs 3:5-6 are two verses that I memorized early on. Ones that as a child I could recite and understand. But it seems to bear more and more weight when harder trials come my way:

Trust in the Lord with all your heart
and lean not on your own understanding;
in all your ways submit to him,
and he will make your paths straight.

Trust in the Lord all my heart. Not: “trust in the Lord with a piece of your heart and wait to see if he’s trustworthy.” Not: “trust in the Lord as long as you’re comfortable, and lean not on your own understanding- unless it seems He’s really not doing it your way…. then go ahead and lean on your own again.”

No.

When I read this passage now, it comes with a little pep talk:

“Trust in the Lord with all of your heart.” Even when it’s scary.
“Lean not on your own understanding.” Release control. You’re okay.
“In all your ways submit to him,” He’s leading this dance, not you. When you’re scared just lean in closer to Him.
“and he will make your paths straight.” And He will guide you through this…and never leave you.

No matter how bad pain gets- I can trust the Lord. Even when I don’t understand- I can trust the Lord. For He is good, even when I’m not. He never breaks His promises, even when I do. And He never leaves me, even when I can’t find words to speak to Him.

What grace. What love. That He would still pursue me. That He would never give up on me. That He would still dance with me.

 

 

Lord, may I rest, knowing you are in charge.

 

November will mark 12 years of pain. A lot of it begins to blend together- but I can still remember the first time I felt pain. And the second, third and fourth. Then it begins to blur. In the beginning, pain came on like a thief in the night- and would leave as quickly as it came- making me sound absolutely crazy. Then the pain began to last longer and longer, until God gave me a beautiful gift of remission for 4 weeks. Four beautiful weeks of being able to feel everything, and not experience any pain. When it ended, pain came on like never before, and still to this day, my memory recalls this as the worst episode of pain I’ve ever had. When it returned to my body- I was uncontrollably vomiting, shaking, and ultimately, it spread to every inch of my body, (where it once had been localized) in one long night.

Honestly, when you’re in pain every single minute of every single day- the days of pain run together. I keep track of the worst 5 episodes for doctors so they know the worst- and every other one I try to suppress, and only remember the timeline and trajectory.

My doctor is one of my heroes. He fights for me and with me in a way I haven’t seen before. And a year ago, he brought out a stronger tool from the toolbox- and told me it was time to start fighting this monster more aggressively. So here we are: 12 months and 5 infusions later. My life has started falling into a predictable cycle of: feel awful pain, feel unbearable pain, go into the hospital for an infusion that lasts five days and nights, recover for a week at home, feel dramatically better (typically lowering my pain from a 9 to a 5), catch up on work, thrive, start to feel it creep up, feel awful pain, etc. And this lasts anywhere from 10-13 weeks. Everyone’s hoping the stretches in-between infusions get longer.

These infusions have given me the ability to do more with my life in the in-between, to feel significantly better, and maybe the best part: to feel again. Before a year ago, I hadn’t felt anything but pain in over 8 years since my remission. These infusions help me feel sand, ocean, blankets, grass, water, and above all else-people. These infusions are an incredible gift.

But it’s not killing the disease.
And sometimes, I feel devastated about this.
And other times, I remember it almost doesn’t matter.

The thing is, I’ve known all along that the Lord is the one that will heal me. Or not. The Lord can use what He wants to heal me- whenever He wants. And it’s almost a waste of my breath to be mad at technology and medicine for not working- because it’s the Lord who will take it away. So have I had times that I’ve been mad at the Lord? Yes. Have I felt devastated? Oh yes.

Recently, I’ve discovered that my faith needs some serious work. I believe with every fiber of my being that the Lord can heal me. The problem is, I’ve almost stopped believing that He will. Not because He’s mean or anything close to that. But because it feels almost too late. This disease has grown in my body for so long, I’ve asked for healing for so long, I guess I try to spare myself the disappointment and pray safer prayers like “if this next time you could make me a 4 instead of a 5 or a 3 instead of a 4 that would be amazing!!” Instead of asking the Lord to take it away. It’s come up in the last few months that I’m not alone in this. It’s hard for all of us in my immediate family to pray for healing when it just feels like over and over it’s not responded to the way we want.

All of us, except for Abbie.

My (almost) 13-year-old sister, is the only one in our little family that calls us out on this. She thinks it’s ridiculous that we would pray for a “3” when we could pray for a “0”. And it makes me weepy every time. Her faith inspires mine. I can’t tell you I’m there yet- but I’m so extremely grateful that that’s how she prays. And I hope I can start praying like that too. I’m sure she gives God an earful; knowing her. And I’m sure He looks to her and says, “Well done, Abbie. Never lose your faith in me.”

I’m drawn to the story in the Bible of Jairus’ daughter. Do you remember that one? You can find it in Mark 5:21-43.

Jairus is a Jewish leader who seeks Jesus out because his young daughter is dying. He finds Jesus as Jesus is getting off the boat from traveling from the other side of the lake. Imagine Jairus’ desperation…his emotion…his fear. He tells Jesus of his daughter and asks Him to follow him back to the house so Jesus can lay hands on his daughter and heal her. The passage says that Jesus goes with him. (v. 24) I can only imagine Jairus’ reaction in his mind, “Oh thank goodness! Okay-there’s still hope-Jesus is going to fix it. Jesus is going to heal her. We’ve just got to get back there in time.”

But as they are walking- Jesus stops after feeling someone touch the edge of his garment. “Who touched my clothes?” (v. 30) Here, a woman who had been suffering, ostracized, and bleeding for 12 years had touched Jesus because she knew if she could touch Him, she’d be healed. And she was. Jesus actually praises her for her faith and tells her that her faith healed her. (v. 34)

Another miracle- He did it again! Who knows if this made Jairus hopeful that his daughter was next, or frustrated because didn’t Jesus hear this severity of his daughter’s condition? It’s time to pick up the pace!

But then the Bible records that Jairus is found by messengers from his house with the news that his daughter has died. I imagine there is absolutely no worse news than that for a parent to hear. And the Bible records the reaction…admittedly, that I believe would have had too, “Why bother the Teacher anymore?” (v. 35)

I wouldn’t have said to be cutting- but to honestly say, “well, you have so many people who are looking for you- if it’s too late for my daughter- don’t waste your time- go heal someone else.” Again, not to be passive aggressive, but just honest. And perhaps I’d feel mad that, “maybe had we not stopped….”  Or thinking, “I wasn’t even there to say good bye.”

But Jesus says, “Don’t be afraid; just believe.” (v. 36) When they got to the house, and hear the wails of mourning people- Jesus questions why they are upset and let’s them know that she’s not dead but asleep.

I’m pretty sure she was dead. I’m pretty sure they knew when someone was dead. I’m pretty sure what He was telling them was that it wasn’t too late. That death didn’t mean it was over for Jesus.

Jesus takes the little girl by the hand and says, “Talitha Koum” which means “little girl, I say to you, get up!” (v. 41)

And she does.

 

With my pain, when I ask God to take it away and He doesn’t, I’m so drawn to say, “why bother the Teacher anymore? It’s over.” But if Jesus can heal the woman who bled for 12 years and Jairus’ daughter-who died- I’m pretty sure it’s not too late for me.

I so badly want to hear the words, “Talitha Koum.” I want it to be my turn.

But what I’m learning is that my soul matters more than my body, and this isn’t just about healing me. It’s about teaching me to have faith. Faith that He can heal me. Faith that He will heal me. Faith that believes it’s never too late.

Faith that one day He’ll take me by the hand and say, “Talitha Koum.”

I love dancing….and I am a terrible dancer. If this wasn’t obvious in high school- it was very obvious when my friends began to get married and I realized I have approximately two “moves” which both get laughed at by my closest people. It’s totally okay-I can admit this. As much as I enjoy dancing, there’s only three kinds I really love: kitchen dancing, ballet (when it tells a story), and slow dancing.  There’s a reason. A good one, I think. I love dancing because it’s my unspoken reminder to my very broken, pain-filled body, that it can still reflect joy.

I’ve wrestled more and more over pain as I’ve gotten older. Perhaps because it’s not going away. Don’t’ hear me shaming, hear me processing: I’ve just realized that it feels like my body cannot do much good. I often wish I had a new one; one that didn’t hurt so much, wasn’t filled with disease, one that could do more.

Similarly, in this processing, I’ve discovered that I value more and more the good my body can do: it can hold, it can hug, it can kiss, it can dance, it can serve- and so I try to do these things more. I try to remind my heart that this broken body can still do good things.

Thankfully, I grew up in a home that prioritized a relationship with the Lord- and I deeply value mine. I’ve been in pain for almost 12 years, and in that time, I haven’t really struggled with wondering why He would let me be in pain- until recently. Within this last year and a half I have asked more questions to Him then I ever had about my pain. Again, perhaps it’s because the pain doesn’t seem to be going away, and if anything, getting harder to cope with. But in the process of asking the Lord hard questions, and wrestling with the answers, I have imagined this scene in my head that, for me, greatly reflects our relationship:

It’s like a dance. When I was a child, I used to stand on His feet. But as I got older, I learned how to dance with Him- with my feet on the ground. And the problem was not that I wanted to dance with Him, it was that I wanted to lead– and when I couldn’t lead, like an immature child, I just wouldn’t dance.

I’m learning how to trust that no matter how painful this nasty RSD gets, it is completely safe to dance with Him. That I don’t need to try to take over the leading when it gets scary- because He never loses control. That when I’m scared, I can just lean in closer- even close my eyes, but I don’t need to stop dancing with Him. Something beautiful can still come from the broken. Something beautiful always comes out of the dance.

So I wear a key around my neck that says “dance” to remind me it’s okay to not be in control. To remind me to trust the Lord. To remind me when the pain gets to be more than I can handle- it’s not too big for the Lord to take away. To remind me to breathe- and dance.

For me, dancing with the Lord while still in pain is an unspoken way of saying, “I trust you” even when I’m scared. It’s an unspoken promise to have faith even when I can’t see the next step. It’s a visual for me of what to do when I don’t have words- whether because of intense joy or sorrow: to hold tight to the Lord, let Him lead, and trust Him with each step. To dance.

My hope would be that no matter what the next step is with pain-I can always be found dancing with the Lord. That that’s what people see when they see me. That being chronically ill only means an opportunity to grow in my faith. That I can be found chronically dancing.