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.