surrounded by truth, surrounded by worship

My dear friends,

One of the frustrating things about sickness is that it’s difficult to know what is true. We are surrounded with many different perspectives and agonizing decisions. It’s easy to get swallowed up in all of the indecision, but I have experienced something that cuts through that — Worship.

For me, worshipping Jesus is like coming up for air when I have been somersaulting in the waves. I have a new, bigger perspective. It reminds me of what is really true in life — who Jesus is, what He has done for me, what He thinks about me. It fills me with peace as I remember my God is constant even in chaotic circumstances. It fills me with hope as I remember the things He has promised to do for me, and the ways He has already been good to me.

Worshipping God can look many ways — singing, playing instruments, dancing, praying, stillness… The point is that we actively let our heart soften before the Lord — wanting to hear Him, wanting to thank Him. It’s a heart posture.

Amidst all of these ways, the Bible does talk a lot about using music. In fact, David says of the Lord, “You are my hiding place; you will protect me from trouble and surround me with songs of deliverance” (Psalm 32:7). I love singing and playing the piano in worship, but my favorite is simply listening… letting the truths of God wash over me, letting the truths of God deliver me from my grief, from my despair, from my own false conclusions… Being surrounded by songs of deliverance

It’s powerful when we surround ourselves in truth, and the more that we do it… the more clear life becomes. Worship is one of the ways that we can be buoyed up in truth..

So today I want to share some of my favorite songs with you. I think they would be meaningful to anyone, but they feel especially intimate to me. So many great words of truth, hope, surrender, comfort, and strength.

I pray great blessing for you as songs of deliverance are sung over you.

Healing Is In Your Hands, Christy Nochels

Refresh Me, Leeland

Be Still, Hillsong Worship

Mountain, Hillsong Worship

Holy Spirit Have Your Way, Leeland

New Wine, Hillsong Worship

Behold (Then Sings My Soul), Hillsong Worship

You Hold Me Now, Hillsong UNITED

Lion and the Lamb, Leeland

Carried to the Table, Leeland

Never Once, Matt Redman

Healer, Kari Jobe

In Your Freedom, Hillsong Live

I Am Not Alone, Kari Jobe

Beautiful Exchange, Hillsong Live

Be Still, Kari Jobe

Dear friends, there’s so much more that I would like to talk with you about worship — it accomplishes profound things. Let’s do that sometime.


the faith to go, the faith to stay


In the course of being sick, I am daily confronted with the decision to stay or to go. Go to the party or stay at home. Go to the church service or stay at home. Have that friend over for lunch or cancel. The canceling of plans always feels like a “no”, like a negative thing, whereas “go” feels like a “yes”. Instinctively, one feels good; one feels bad. One feels like a victory, the other a failure.

I think it’s easy as a Christian to start to associate “going” as the faith-option, and “staying” or “resting” as the giving-up-on-faith option… or at least the “lesser-faith” option. It’s easy to think of it as a cop-out. However, both “resting” and “going” are godly principles, and both of those things require faith.

  • We see the instruction to rest throughout the Bible. It’s everywhere. “Be still and know that I’m God” (Psalm 46:10). “Come with me by yourselves to a quiet place and get some rest” (Mark 6:31b). God even gave the Israelites instruction to rest for ¼ of the year. That’s right. When you add up the Sabbaths, the feasts and Holy Days… The Israelites rested for ¼ of the year.
  • And of course, the Bible is full of people who boldly followed God’s “impossible” instructions to “go!” – Moses commanding the Pharaoh to let God’s people go, and ultimately leading the Israelites out of Egypt (Exodus 2-15). Gideon winnowing his army down (by God’s instruction) from 32,000 to 300 and then conquering 120,000 (Judges 7). Paul continuing in ministry despite shipwrecks, stonings, imprisonment.

Over the years, I have experienced the beauty of rest, as well as the beauty of doing something that is beyond my ability. I like both of those things.

When going — It takes faith to push through the fear of whether or not your body will actually make it. It takes faith to believe that even if you do crash, that God can cover your disappointment and bring you help. It takes faith to believe that His strength will sustain you when you have none. It takes faith to believe that He’s not limited by your limitations. It takes faith to believe that He will give you words to say to people even when your head is all cloudy. It takes faith to believe that He can bring fun in the midst of misery. It takes faith to believe that no matter how long you are able to “go”, that Jesus can use it for your good and the good of others.

When staying – It takes faith to push through the disappointment of not doing what was in your heart. It takes faith to believe that your relationships will be okay even when you’re not around much. It takes faith to believe that God will speak to you even when you don’t attend that church service or meeting because if He wants to say something to you, He knows how to say it in any setting. It takes faith to believe that though you’re only ever able to offer a little, it is enough and He knows what to do with it. It takes faith to believe that He knows how to cover over any people who you were supposed to be leading that night. It takes faith to believe that He can give you a rich, fulfilling life even when you’re stuck at home.

Oh my friends, both “staying” and “going” have endless possibilities for big faith stances. How wonderful to be confronted with our need for God. Honestly, I mean that. I hope to be well someday (and hopefully someday soon), but I never, never, never want to forget that I daily need Him. And being sick is a reminder of that. It brings me to ask the Lord for wisdom and direction every day.

So, I have come up with a saying in the last year. I really like it. Would you like to know my daily prayer? It goes, “Lord, would you like me to have the faith to go – believing that you will give me the strength and grace? OR, would you like me to have the faith to stay – believing that You know how to comfort me and that no one (me or others) will be robbed?”

Both are faith. Truly, both are faith. It is a faith-fight to go, and it is a faith-fight to stay.

Resting is a beautiful thing. “Rest” has over and over again been the answer and my instruction from the Lord the last seven years, and it has not come easily. I’m more of a “go” kind of person, but I have really enjoyed and been blessed by resting in God’s grace. Resting confronts me even more with my weakness. Resting is quiet and tender. Resting doesn’t have distractions in the same way. Resting has been the vehicle by which God has convinced me that He loves me for who I am, not what I do. Resting has been the vehicle by which God has convinced me that He sees me and knows how to bring peace and comfort into a turbulent situation. Resting has been the vehicle by which God has shown Himself strong for me by taking care of the people whom I felt needed me. Oh man, God is so good and faithful. He doesn’t want me to spin my wheels trying, trying, trying to make life work. Instead, He keeps speaking “rest” and bringing me help. It’s amazing. This is kingdom stuff.

So, let’s get to the practical, what about the MANY times that I don’t feel like I have an answer to my prayer? (And by answer – I mean “a sense of peace about what to do”). Such a good question, friend. There are two things that I do when I don’t feel like I have an answer from the Lord:

  1. I talk to someone who knows me well. I ask them to help me gauge what maybe I can’t see. That’s not bad or “less-good”, by the way. God means for us to be in relationships. God gave spiritual gifts in order that we supply what each other needs. God set up a system of discipleship, so that others can speak into our lives. It’s wise to ask for someone’s help – even in just wading through the muddiness. My person is usually my husband. Sometimes, I’ll ask a couple of other people. But, not surprisingly, these people often say, “Oh Kayli, really? Really? You can’t even stand up. It’s okay to stay home. No one would want you to push yourself like this. We’ll figure out a way for you to still get to partake. Let’s get you set up with a movie and a coffee, yeah?” Yeah. Thank you, Jesus, for people who can help us understand the grace to stay.
  2. And sometimes, I just pick one. I don’t labor over it. I let myself breathe easy… believing that it’s okay to switch plans. Believing that no matter what, God will take care for me. He’s not perplexed by any situation. He knows how to burst into any hard place. So, when we ask, and we don’t feel like we’ve heard from Him, then I believe that’s okay. I know that God knows how to get my attention. The good news is that the Bible promises that He’ll be faithful to us. The Bible promises that God is near, that He’ll never leave us. So, it’s okay. I’ll be okay.

Today, I’m hoping that this letter gives you a breath of fresh air – a reminder that you can demonstrate your faith many ways. I like that “going” includes more people. I like that “staying” is often just Him and me. There’s so much grace and comfort and joy and peace for us to live in. God is good, and His plans for us are good (Psalm 119:68). How securing is that?! How wonderful that God promises “good” in the midst of “hard”.

Whether you’re a fellow Lymie or not, life is full of extraordinarily difficult circumstances. The reality of it is that it’s hard. But there is a bigger, more true reality that is deeply filled with God’s goodness.

P.S. This post is mostly addressing the fact that faith can take multiple forms. But, I find myself wanting to do a Part II (hopefully soon) that is more of an actual Bible study on how to “hear from the Lord”.  In the meantime, I offer you this oh-so-very-encouraging-to-me reflection by one of the people who has most helped me, my old boss Daniel Brown:

“When he puts forth all his own, he goes ahead of them, and the sheep follow him because they know his voice.” -John 10:4

All of us who earnestly follow and surrender to Jesus want to hear Him speak—more and more, about anything and everything. His voice comforts like a shelter in a storm, like an unmoved landmark guiding our steps. We welcome His voice even if He is correcting or repositioning us like a coach calling out to us during a game. Once we know it’s Him speaking, we reply, “Have Your way in me.”

But we hesitate when we wonder, “Is that You, O Lord—or me?” If we’re not sure who’s speaking, if we question the source of that inner voice, uncertain if our brain or our King whispers counsel, we don’t want to commit ourselves to following.

Be encouraged that even if you sometimes feel badly about not being able to ‘hear’ God better, your very reluctance about saying/doing something, UNLESS you’re sure it’s something God is leading you in, confirms you as one of His own.

For most of us, most of the time, it isn’t the difficulty of what God asks us to surrender, do or say that makes it hard to obey; what makes choices difficult is not knowing if it is the voice of our Shepherd. So, how can we ‘hear’ His voice better?

From my spiritual journey, I offer two ‘helps’ for hearing better:
(1) Listen to the echoes. Jesus, the Word of God, mostly speaks through the written word of God. The more Bible verses you know, the more echoes of the Bible you will hear when Jesus speaks.
(2) Listen to the tone of voice. Jesus the Good Shepherd, who is gentle and humble in heart, mostly speaks tenderly, encouragingly and quite personally. He sounds like what He seems like in the gospels.

Alrighty, well thank you for reading my very long post. Till next time, friends!

“Jesus, what’s next?”


Questions are an amazing start place. I want to ask more questions. I want to assume that I don’t have the full picture. This is something I’ve been practicing for a few years, and I have to tell you… every time I do, I’m grateful in the end. Being open to a fuller picture or a different picture makes room to discover something new.

In sickness, we try hard to understand our bodies, what treatments are available and could help. We work tirelessly to understand. And that is good. There are so many waves of symptoms, waves of emotions, waves of spiritual attack (fear, futility, bitterness)… Life and our health are always changing, which means we have to make decisions often and quickly. There are so many forks in the road. And we try to be wise, which is so good. So very good.

For me, I very much want to do my part to understand, to pay attention, to consider, to talk with trusted loved ones about what they think… but there is more. Even more than the wisdom I could come up with… is the wisdom that comes from Jesus. When I have decisions to make (whether large or small), I like to ask Jesus, “What’s next?”, “What do you want for me?”, “Where would you like to lead me?”.

My friends, I don’t actually have a lot to say you tonight, except this simple thing: that asking Jesus questions throughout our health journeys will make life infinitely more peaceful, hopeful, and us more confident…

God tells us what He’s like in the Bible. He makes promises to us of what He’ll be like regardless of what we do — He promises that He will never leave us or forsake us, that His plan for us is abundant life, that His character is kind, faithful, loving… That we can trust that His directions in life are good.

And not only does He tell us these things, but we have people who corroborate the story. David says that he has experienced the goodness of the Lord: that He has experienced God leading Him in paths of righteousness, in green pastures [places full of life], beside still waters [places characterized by peace]. Paul says that he has learned the secret of being content in every situation through God’s security. Isaiah prophesies that God will send someone to bring justice, to bring hope to the brokenhearted and the sick… and that is fulfilled by Jesus’ coming.

I follow a good God. I follow Him. I want to follow Him. I try to follow Him… and the way to do that is by going back to Him over and over asking, “What’s next?” … because I know Jesus wants to lead me [us] in good, clear, hopeful, comforting paths.

It’s over-simplified, I know. Sometimes the answer doesn’t seem clear, or takes a while, or feels overwhelming. And I would urge you to keep asking, to study the Bible and the way God speaks to us (what His voice sounds like), and I would urge you to talk to a trusted pastor or leader who can help in that listening time.

I’m in a listening time. That’s why this is fresh for me to say to you. I’m asking, “What’s next?”. I have some big decisions right now. It is not a fun or comfortable place; it’s quite difficult. But it can be a good place. It can be a place where Jesus proves to us that He’s real, that He cares deeply about us, and that He will lead us when we ask Him. And that is deeply securing for all of our lives.

“sharing the veto”: marriage and chronic illness part 2


I love talking about marriage. Though Kevin and I haven’t been married all that long, it’s been an eventful few years — ultimately forcing us to determine who we were going to be as a couple in some pretty hard circumstances. It’s been a crash-course.

We’re still learning lots, but we’ve definitely found some gems along the way. I briefly shared some of my favorite marriage lessons in the post, “In Sickness and in Health”: Marriage and Chronic Illness. Recently, another gem has been stirring in my heart, and I want to share it with you in hope that it is helpful: Kevin and I share veto power.

My friends, the spouse who is sick is constantly having to assess their body to understand if what they’re doing is smart or not. I can’t tell you how many times we’ve sat in the car outside our destination (that we just drove 40 minutes to get to), and I have to decide if I’m well enough to go in. If you’re anything like me, there’s a lot of back-and-forthness about these decisions. The desire vs. disappointment. The maybe-foolish-but-it-might-be-okay choice vs. the wise-and-not-so-fun choice. It’s a fact of life that the sick spouse has to make judgment calls constantly, and hopefully the healthy spouse is understanding and helpful when the sad decision to switch plans is made.

But, there’s a great opportunity to share the decision-making here. It’s natural to assume that because the sick person knows their body best, if they say they’re “fine”, then everything is okay. But I don’t think that’s always true, or at least it’s not for me. Sometimes I decide to push myself anyway, because I’m stubbornly insistent: “This is what I’m doing!” Or, sometimes I don’t even know that I’m pushing too hard, but Kevin can see that it is a bad idea. Kevin sees a lot that I don’t see. He’s a good judge also, because He knows me.

In my heart, I long ago decided to give Kevin “veto power”. Just like I can decide that I need to go home, he can decide that I need to go home. I can often spot the concern in his eyes, and in those moments I like to ask him, “Is my decision regarding ______________ making you uncomfortable?” Sometimes he says “no”, and sometimes he says “yes”…

If it is a “yes”, the conversation then proceeds one of two ways: 1) I decide immediately that it’s important to me to listen to Kevin’s concern (whether or not I’m convinced) and back-off of whatever thing I’m trying to do, or 2) I explain my reasoning behind pushing myself, and then we decide together if it’s worth it or not. Generally, we err on the side of caution. If something is “iffy”, then it’s probably best to go home — for my health’s sake, for Kevin’s stress levels, and honestly for the good of the people around me who might be worried when I hit “the wall”.

Kevin has as much veto power as I do. He doesn’t expect it from me, but I want to give it to him. It’s a decision that I willingly make, so that he can feel more comfortable. As awful as it is being sick, being the healthy spouse is heart-breaking. Healthy spouses feel powerless as they try to care for and comfort their sick spouse. I don’t want Kevin to feel powerless. I especially don’t want him to feel powerless watching me be reckless with my body’s limits. I want him to feel like we’re a team. I want him to know that I take his concerns seriously. Yes, it’s my body, but it’s also his. We are “one”. We are “Team Albert”.

It’s always disappointing to stay home from the wedding, leave the party early, or turn around half-way to your destination. But I honestly can tell you I’ve been happy with every decision to relent based upon Kevin’s perspective. He can see things I can’t. He has saved me from over-extending myself so many times. When I’m stuck in brain-fog and can’t decide, he can recognize that’s a red flag. I trust him to care for me. I love him and want to honor his desire to keep me safe.

My friends, oh if you do this, your marriage will have many happy, safe, rich moments. The disappointment of not getting to do what was is in your heart to do, is replaced by happiness in getting to listen to your spouse’s heart to love and protect you. And in return they get to feel heard. It’s a win-win. It won’t be the “win” you expected for that day, but I guarantee you that it will be a satisfying “win” for your marriage.

I wish you great joy and deep moments of listening and comfort with your spouse.

all that is in my heart


Little By Little Process_65_Little By Little Process.jpg

My friends, it has been a long time since my last post. There are things rumbling around in my heart, but nothing ever seems quite right, and frankly, I believe the problem is that I’ve never come out and said directly what is in my heart for you.

What I want for you more than anything is to know Jesus.

Jesus is the only reason my life works. And my friends, I very much like my life. Many of my circumstances are beyond miserable, yet I like my life.

That is BIG. I know that is big. My world should feel small, but it doesn’t. It feels wide-open. It feels like there are things to live for, people to love, people to know. And it truly is all because of Jesus.

It didn’t always feel this way. There was a process. I have waded through grief, hopelessness, discouragement, fear… But through all of this, I have fought to let Jesus be the foundation I build my life on. It’s the thing I place the most value in. It’s the thing I trust most to be true. And it has made me feel safe when my circumstances are at their worst.

Because of this, I find myself repeating the same plea of comfort year after year —  “Jesus, I need You. I need You. I need You. As long as You are with me, I’ll be okay.” And friends, He has never left me. In fact, He promises us (because He dearly loves all of us), “I will never leave you or forsake you.” (Hebrews 13:5)

The end result is that I am hopeful because He has filled me with hope when I had none. I am comforted because He has given me comfort in my most tender moments. I have compassion to give because I have received an astounding amount of grace. I have done nothing but let God meet me, and it has been incredible.

If you want to know what God is like… If you want to see the kinds of things He does, read the verses below (Isaiah 61:1-3).

The Spirit of the Lord God is upon me,
    because the Lord has anointed me
to bring good news to the poor;
    he has sent me to bind up [address / heal the wounds of] the brokenhearted,
to proclaim liberty [freedom] to the captives,
    and the opening of the prison to those who are bound;
to proclaim the year of the Lord‘s favor [blessing],
    and the day of vengeance of our God;
    to comfort all who mourn;
to grant to those who mourn in Zion—
    to give them a beautiful headdress instead of ashes,
the oil of gladness instead of mourning,
    the garment of praise instead of a faint spirit;
that they may be called oaks of righteousness,
[taking the weak and making them strong]

    the planting of the Lord, that he may be glorified.

That is what He is like. That is what He does! He extends special attention, love, grace, peace to the broken, to the sick, to the captive. He not only comforts them, but He comes to make them free and to make them strong.

There is this lie that says God loves / blesses / favors / advances only those who work hard, those who are qualified, those who do everything right, those who have “made something” of themselves… But the TRUTH is that God’s love is based upon who He is (good, kind, merciful, just), not upon what we do. No qualification. No conditions. His heart is moved specifically for those who are suffering because of His love for us.

My friends, Jesus sees the misery, the pain, the most tender parts of your soul that you could never even describe. You are not forgotten. He sees those places, and He wants to comfort you and make your world BIG.

Today, I’m talking to two kinds of friends:

To those who already know God, but may have forgotten that He still has life for you… Oh dear friend, you are not alone. The enemy has lied to you and has kicked you when you’re down. But the TRUTH is that your life can still be so very full. Jesus can make your life more full than even when you were well. God isn’t limited by your limits. He wants to meet you and shower you with affection. Please, take some time right now to pray something like this:

“Jesus, thank You that You offer me love and comfort regardless of what I do to ‘earn’ it. I’m sorry for forgetting that You want to care for me in my suffering. I know that You promise to be near the brokenhearted, and that’s me. I don’t want these miserable circumstances to overshadow who You are to me and what You can do. I know You aren’t limited by my limitations. Thank You for choosing to be with me. Please help me to remember I can ask for help all the time, and you will always answer. Please show me what it means for my world to be BIG. I want everything You have for me. Thank You, Jesus. Amen.”

And to my dear friends who don’t yet know God… Oh my, you are loved. You are loved for who you are, right where you are. I follow Jesus because I know He is good. I know that He died in order to bring us life. I know that when I let Him lead my life, I experience joy and excitement. I want you to know Jesus, because I know He has that same love and life for you. If you want to know this Jesus, then when you are ready, pray a prayer like this:

“Jesus, I want to experience life in You. I know I’ve done wrong things in my life that have separated me from You. I don’t want that anymore. I’m sorry Jesus;  please forgive me and show me this new way to live — full of who You are… full of love, comfort, hope, peace. I want to follow You. I want to live in the full life that You offer. Thank You for loving me just because of who I am. Amen.” If you have just prayed this, please reach out to me or another friend who knows Jesus… and let us connect you to a church where you can learn more. One of the amazing things things about God is His promise to put the lonely into families (Psalm 68:6). He wants to give you even more family. He wants to give you a place to be encouraged and grow.

My dear friends, there just aren’t enough words to describe how good God is. Every bit of His character is good (Psalm 119:68). My greatest hope in the world is that you open your heart to hear from Him.

One of my favorite verses says that “If we are faithless, He remains faithful” (2 Timothy 2:13). Though all of our doubts, Jesus never abandons us, never stops loving us. He wants to be near you. He wants to meet you right where you are.

Be blessed. Be loved. Be known and comforted, because He has seen us and come to rescue us.


I have labored over this post. I have many thoughts about suffering, yet it is such a sensitive topic that I find myself reworking the wording. This topic needs so much compassion and care to do it justice. My dear friends, please know that I mean to treat your own suffering with tenderness. Let’s begin:

There is so much suffering throughout the world. There is likely a great amount of suffering in your heart too, dear reader. We all experience devastating circumstances, and it is deeply personal and unique to each person. I am so sorry for whatever is causing you pain in this season. I hope that each of us (no matter what we are suffering with) are given the grace to process and grieve and bumble our way through this time. And I hope it inspires us to be more gracious to others in their suffering too.

My suffering has a name: Lyme Disease. I like to workshop phrases for the seasons of my life. It helps me know how I feel about them, and give words to something that feels impossible to explain. Recently, I found myself thinking this phrase. “Even though being sick is now ‘normal’… it is still traumatic every day, because the suffering is new every day.” There are just some things you never get used to, and it can wear upon a person. I know it has worn upon me, and I’ve seen it wear upon loved ones.

I’ve noticed a thought pattern amidst fellow sufferers. We can easily fall into the mindset of trying to avoid suffering at all costs. And why wouldn’t we try?… Suffering is awful. My dear friends, I so wish I could take away your pain and all the consequences of this disease. But since I can’t, I offer you what I do have… which is an encouragement to think freshly about suffering.

There was a time when I was completely consumed with my illness. Lyme consumed my body. Suffering consumed my heart and mind. It was miserable; I wasn’t me anymore. I talk about the story here in my last post, still being me…  One of the things that started to change my perspective about suffering was watching the way two stellar women in my life handled their own chronic illnesses. They were downright miserable; they had the worst of circumstances… and yet they were so fun to be with. They were cheerful and peaceful. Each time I left their company, I felt refreshed and encouraged. They managed to be deep, rich, joyful, and generous in the midst of their suffering. These were women I wanted to be like.

Watching them helped me shift gears, realizing that having good health, having good circumstances, is not the most important thing in life. Suffering can be devastating… but it doesn’t have to strip you of who you are. It doesn’t have to put your life on pause.

IMG_5403 (1)We have a house-plant tree named Larry. At 6 months, he is my longest surviving house plant. I want to keep him alive like I want to eat 12 Kringles in one sitting (a whole cream cheese-filled lot!)

It’s been unseasonably hot in Santa Cruz, and as we have no air-conditioner, Larry is baking in the house. I’ve watched him slowly whither the last two months; each day more leaves fall. I assumed the problem was the heat.

I had a stroke of genius the other day. Fresh potting soil might help! (Remember, I kill plants… This was a big revelation to me). When I went to pack fresh earth into Larry’s pot, I was shocked to see a fist-sized clump of his roots exposed that had tried to grow outside of the bowl. I packed him into a bigger pot with tons of fresh soil, and already I can see him reviving. His roots have new territory to explore.

Larry’s roots need to be able to grow deeper before his trunk can grow taller. I assumed the problem was the heat because of what I could see. I never thought to look beneath the surface.

“Suffering” is like stifling heat. When we’re experiencing temperatures far beyond what is “good” for us, and we’re seeing our leaves drop, it’s easy to assume that the thing that is killing us is the “suffering”, and so we must get rid of it as quickly as possible. I think that the real problem is that we can be so busy fighting “suffering” that we forget to enjoy life and keep growing. It’s like we put everything on pause as we try to fight “suffering”, but in the end all of our roots are clumped up with nowhere to go, and our leaves start dropping.

And here is the point of our story: I have found that growth and beauty can still happen in the darkness of my suffering. My leaves don’t have to drop, as long as I keep expanding. I bumble around more because it’s new territory and dark under the soil, but my search for water (new life) is worth it. We tend to associate life with the part we can see, but there is also growth happening in the darkness as the roots search for water. I think growth in dark places provides great stability in the end.

I’ve done my best growing in the last five years. For me, suffering has been the circumstance that forced me every day to choose who I want to be. Will I be bitter or cheerful? Will I be self-consumed or fight to be others-consumed? Will I lash out or answer with grace? Will I let suffering rule my life? I don’t think I would have been confronted with these decisions in the same way had it not been for my hard circumstances. I’ve been a happier person as I fight to make good decisions (growth) in the face of suffering.

It comes down to this… I have learned to be more concerned with WHO I am than WHAT circumstances I am in. I want to keep growing no matter what.

That doesn’t negate my feelings about wishing I were well and fighting to be well. Oh I’m fighting! But, it does take the focus off of being consumed with health. Do you understand what I mean? All of my thoughts, all of my money, all of my time aren’t spent on getting well. My life isn’t about becoming well.

My life is about loving others, growing to be more like Jesus, enjoying hobbies, AND fighting to be well. I have lots to live for, lots to enjoy.

When we live our lives determined to avoid suffering at all costs, we miss out on the comfort, the grace, the contentment, and the growth. Being sick “well” makes you rich, and it gives you depth that can refresh others. Don’t miss that. Don’t miss all that good stuff. By all means, fight to be well. Fight hard. But also fight to get every inch of growth in the meantime.

still being me


My dear friends,

Living with chronic illness challenges everything. It challenges our daily commitments, our future hopes, our relationships, and it challenges our very being. When it’s so easy to feel despair, to feel alone, to feel forgotten, to feel fear… we can be wrecked in a way that is even more devastating than Lyme.

Lyme, as devastating as it is, wreaks havoc in our physical bodies. The consequences of illness that shake our hearts, however, are much more traumatic – Sickness wants to steal our identities. It can make us bitter. It can make us uncompassionate. I think that I have fought more to still be myself than I have fought Lyme. It has been the greatest fight of my life, and it has been worth fighting.

It wasn’t until a year into being symptomatic that the disease really took hold. It suddenly became more likely that I would stay in bed all day than I would actually get out of bed. My world flipped, and I flipped with it. My outward mannerisms were still the same, but inside I was consumed by fear. I felt like my life was over, that I didn’t have anything to offer anyone, like I was always “missing out”, and that my friends would get tired of loving and supporting me. I was painstakingly aware at how much I was failing at life – my job, my relationships, everything…

Every thought was bent on being sick. It was the only thing I wanted to talk about. And worst of all, I started judging people mercilessly. I would compare what I was going through with the “trivial” things that they were, and I felt special. I felt like what I was going through was far deeper than anything they could imagine. When they talked about a cold, I would be angry that they would dare complain in front of me. I was quickly going down a path of bitterness.

Let’s call it what it was… My attitude was nasty. It was so nasty. And wrong. It was toxic, and it lacked any love. I felt like I was drowning. I knew that I didn’t want to feel this way about myself or about others, but I couldn’t seem to keep my head above water.

My prayers were simple at that time. I couldn’t seem to muster much, but I often prayed a genuine, tearful and quiet “Help”. I knew that I couldn’t be “me” again by pulling myself up in my own strength. I needed Jesus to rescue me.

And He did. He answered my simple pleas for “Help” in such perfect ways… exactly suited to who I am and what I needed. The help didn’t come all at once, but in waves. It came as my boss promoted me, when my attendance should’ve led to me being “let go”. It came in a friend bringing by flowers that she picked in her garden. It came through my roommates (who didn’t know I was so scared) telling me out of the blue that they loved me and would be with me always. It came in my leaders sharing verses that were in their hearts for me – reminders of who God is and His promises to be a rescue to us. And it came through the Holy Spirit speaking to me – When I finally admitted to Him how much of a failure I felt like, and how I was frustrated that I needed so much grace in life… I heard a gentle, kind voice in my head (too kind to be made-up by myself) that said, “My grace and love is a sign of favor, not of failure.” I was receiving much grace not because Jesus had to put up with my miserable failure. I was being given grace because I was dearly loved. It was love and favor that led to His grace. With all of these beautiful things, with all of this hope… my heart softened.

I began to see how the ways I had viewed life, success, and love before were skewed. My identity was wrapped up in trying to be “good” in order to earn love, and when I suddenly couldn’t keep up with doing everything that I “should” do to be pleasing, my identity crumbled. And I am so glad, because Jesus convinced me in that time that He was with me, that He wouldn’t leave me, that I was pleasing because of who I am, not because of what I do, and that He still had an amazing life in store for me. My identity was given a new foundation – that I was pleasing just because of who I am.

I was met with great grace even amidst my stinky attitude. And this is the wonderful thing about Jesus. He wants us to come to Him in our imperfection. The only requirement of coming to Jesus is that we want to know what He thinks, that we want to be more like Him. I was making a lot of stinky decisions. I didn’t deserve the grace and love that I was met with. But that’s how Jesus works. That’s what He does.

Jesus was able to extend a lot of help to me because I was open to it. He always wants to meet us.

Still being “you” isn’t a formula, but here are some things I would suggest:

  1. Being “open” to learning is the first step. If we’re so shut down, so closed off… there isn’t really room to move forward. We have to want to get out. We have to ask for help. We have to listen.
  2. The next few steps are a combination of following through / remembering any instruction Jesus gives, and finding things we can be thankful for.
    • Obedience to Jesus always produces life, and His words are like a handle bar. When everything else is going haywire, we can hold on to what Jesus has said, and find safety.
    • And then there is gratitude, which makes hearts all mushy, which is exactly the goal. Mushiness. Mushy, soft hearts. It helps turn our focus outward. It reminds us of all the good things, and remembering good things gives us hope for the future.
  3. When you find yourself stuck in a bad habit of comparison, you break the thought and pray for help (all comparison is unhealthy – comparing yourself to others, or even comparing your current self to what you were like when you were well). Comparison leads us down the rabbit hole. As soon as you realize you are getting sucked in, you gotta stomp on that thought! And where you feel convicted that your past comparisons have opened you up to being judgmental or angry (like me), that’s where you can go back to Jesus and go back to your friends, and ask for forgiveness. It will heal your relationships, it will heal you, and Jesus will help you trade judgment and anger for compassion and love.
  4. And then there are all of the daily decisions to be cheerful, where you refuse to give into introspection and frankly, self-pity. So, you combat that by seeking out others whom you can get to know, to really seek to know what is important to them. You get outside of yourself. You keep making plans, even if there’s a good chance you’ll cancel. You look for opportunities to laugh! These things remind you that your life is more than your illness. There are other wonderful things to do, and many wonderful people to love on and be loved by. Your life isn’t over.

In practicing these things, I have grown to feel much more “me” than I have ever felt in my life. I thought I was going to be a shell of a person, but instead I feel like I’ve bloomed into who I really am. I am the most confident, happy, peaceful, and content I have ever been. My goofiness is still with me; my mercy for others is back in full force. I have more plans in my heart than I know what to do with. I am a combination of who I thought I was, and who I didn’t even know that I could be! And best of all, where fear, hopelessness, and judgment had consumed me, Jesus replaced it with a heart of love and compassion. I became the “real me” by letting Jesus lead me, and by fighting for it.

Being consumed by the fears and disappointment of your illness will leave you hopeless. It’s a lonely place. It’s got walls that don’t let people in. It makes the sick person the only person.

Fighting to be you – to still have hope, dreams, relationships, compassion, joy is the most important thing you could do. It is the most important fight of your life. As life-giving as treatment is, being well of heart, being content… is much more satisfying.

May you be more “you” than you have ever been before. May you be consumed with love.


so your lymie went M.I.A…

IMG_1754My dear friends,

It’s been a while since my last post, and the reason can be summed up entirely in this picture.

We all laugh at silly memes like this, but there is a lot of truth in this for people who are chronically ill. I laugh at this photo not because it’s silly and ridiculous, but because it’s exactly how I feel much of the time.

And then there is a part of me that doesn’t laugh. It’s frustrating how true it is. Many of the sick people I know, including myself, fight against the guilt of how many things we “ought” to be doing, or “ought” to have done, people we feel like we’ve let down, and people we feel we are letting down in this very moment. And yet all the “fight” we can muster is to breathe and maybe blink…

When your Lymie loved one goes “dark” (my term for going “M.I.A.”) for a while, rest assured that it’s frustrating, it’s necessary, and it’s disappointing to them. I want to plead with you not to take your Lymie loved one’s radio silence as a statement about you. It is merely a statement that they are fighting with everything they’ve got to get through a debilitating wave of symptoms.They are trying so hard just to make it through the day, that even very important, dear plans fall away.

For my part, I so badly want the people in my life to know that I love them even when I’m not around. I try my best to communicate that love… But I know that I’ve not always communicated clearly, and that loved ones haven’t always felt “in the know”. I am always wanting to do better. I’m always wanting to learn how to communicate in the most helpful way. BUT, it takes practice for me, and it will take practice for your Lymie loved one as well.

Can I just say… I know it’s deeply hard for both the sick person and for the loved ones—so hard for both that it’s even difficult to express in words. The person with the illness has the responsibility of learning to be cheerful in the midst of great disappointment, learning to “fight” to get better when they have no energy left, and learning to communicate with you about an unfolding life that is foreign to them. Your role—should you choose to “lean in” to being in this with them—is to learn to be unrelenting in patience and forgiveness, to be compassionate to the point of bringing happy tears to their eyes, and when you don’t see your Lymie loved one for a while, or if they take a while to get back to you, to simply assume that they love you dearly, but are focused on breathing and blinking right now.

Typing these words is hard for me. When I intentionally spend so much time being cheerful (because it’s who I am), it is hard to be more serious about the pain and sorrow of it all… particularly the emotional pain and disappointment of misunderstanding and “space” between loved ones. I always want to end on a happy note, but a sobering ending feels more appropriate today. I hope you feel the affection I feel for you, and the compassion that I have knowing the depth of sorrow that you feel in this limbo time.

May we all grow in understanding, compassion, patience, and love. Disease is sobering, but it can also be a tool to bring great depth and richness to relationships. May you find that to be true of yours.

Blessings to your Lymies and to you, their loved ones.

“in sickness and in health”: marriage and chronic illness


When Kevin and I met in June of 2010, I had only been symptomatic for a few weeks. He has never known me as a healthy person. He has witnessed me growing more and more sick, and he has been with me every step of the way.

At first, he attentively listened and encouraged me as I recounted my stories of doctors visits and medical decisions. Then, I started including him in my doctors visits, where he would take notes for me and help me remember to ask the questions I wanted answers to. Then, he became my sounding board, and we started making medical decisions together. Even as an engaged couple, he helped me pay for my medicine and doctor’s bills.

Kevin knew what he was getting into when he vowed to care for me in sickness and in health. It wasn’t just a possibility that he would someday care for me in sickness, it was his present reality. It was his future.

We’ve been married now a little over two years, and while we are still kiddos compared to the many wonderful, married champs around us… I know that our marriage is very rich. We’ve practiced this vow every day of our marriage, and it has made us tender-hearted towards each other.

Today I want to talk about some of the things that have made our marriage rich, as we’ve both learned to live out this vow. But before I get into specific tips, I want you to know the point of view I’m starting with — I believe the best starting place for marriage when you’re chronically ill is the attitude / posture that your spouse is your hero.

There aren’t really words to describe the trauma of being sick day after day. There isn’t an adjective strong enough for how awful sickness is. It robs you of life. Awful, awful, awful. You can’t escape it. You’re stuck with it. BUT REMEMBER, your spouse willingly takes it on. This is why they are heroes. They choose to bear the load of finances. They stroke your head and massage your arms when you’re crying in pain. They develop sign language and looks to read your every need. They jump to get you water and pills when you wince. They leave the party early every time with you. They use their vacation time for doctor’s appointments, surgeries, and ER visits. They don’t have this illness, but they say “yes” to living with the trauma of it too. They are the person that runs into the burning building on purpose. It’s amazing. They are amazing.

Starting each day remembering all of your spouse’s “amazingness” creates an atmosphere of gratitude, generosity, love, and mushiness. Kevin and I are the mushiest of them all. But seriously, one of the things that makes Kevin and my marriage very sweet is that because I am constantly noticing the way he cares for me, I respond with gratitude and by serving him back.

Now that we have our super awesome, grateful marriage foundation, we can build on that with my 10 practical “in sickness and in health” marriage tips:

  1. Include your spouse in medical decisions. Personally, I’m a fan of making all medical decisions together. Kevin likes to defer to me, as it is my body… But I always want to listen to him and make a decision together. I value his thoughts just as much as my own. The decision greatly affects him too. I want to feel like we’re a team on this—that’s what marriage is supposed to be like anyway!
  2. Include your spouse in your medical appointments. I like to ask Kevin which appointments he wants to go to, and then make it work for his schedule. He’s not always able to go, but he appreciates that I want him there. I always send him a calendar notification, so that he knows when they’re coming up. It helps us both to feel like we’re on the same page—that he is included, and that I’m not alone in this.
  3. Let your spouse help you with things that stress you. Kevin’s favorite thing is when I ask him to call a medical company that is giving me a hard time. He loves stepping in to protect me. We both end up happy. When you’re sick, stress is like poison. Handing off things to your spouse (if they are able to take it on) helps you feel less crazy, and it helps them feel like they are involved. It’s deeply satisfying for both people.
  4. Expand your support system beyond your spouse. If you and your spouse alone are bearing the weight of your disease, you both will be crushed. It’s asking for trouble. There’s no way that your spouse can be your emotional and physical support at all times, and if they try… They will be run ragged. It’s a quick recipe for disappointment, failure, and frankly bitterness. Kevin and I check in regularly reminding each other to meet with people who refresh us and that we can be our real, raw selves with. This also ensures that when we need help, we have lots of people to call!
  5. Maintain your compassion for the tough stuff they are going through. When work is hard, when they have a cold… They need you to listen, be interested, and care for what is difficult for them. Maintaining your compassion is you practicing the “in sickness” vow too. It’s us caring for them in every circumstance. Remembering this makes your spouse feel special and heard, which in turn makes them love you more, which makes you love them more (you get it—lots of mushy love and affection).
  6. Communicate regularly that just because your health is poor doesn’t mean you want your spouse to stop sharing their feelings when they are hurt or angry. It’s so easy when your spouse loves you dearly for them to put their own feelings “on the back-burner” when your life is tough. It’s up to you to keep validating that their feelings and opinions are always important to you. It will be tough at first for your spouse to bring up certain topics when you’re in pain, but it will be so good for your marriage if you keep working through stuff even when it’s hard. It’s logical, right? — that any relationship where one person bottles down their feelings over and over again isn’t healthy. Yes, this is what you’re fighting against. PS: there are definitely times when Kevin and I do stop a conversation until I’m feeling a bit better, but we always make sure to come back to our paused conversations!
  7. Look for ways to serve them back for all of the wonderful ways they are caring for you. Kevin never expects me to, but I like to make our dinner and do some chores each day (well, when I can…). I know I don’t have to. I know that more than anything he wants me to relax and have fun… But I like serving him. I like making his life easier. He cares for me in so many ways, and I want to care for him back. He knows how much it “costs” me physically, and he’s over-the-moon thankful for it. AND it starts our serving / gratitude cycle all over again. What fun!
  8. Remember that you vowed to care for your spouse when they are healthy, not just when they are sick. It can be tempting to minimize caring for your spouse “in health” as less important than caring for them “in sickness”, but your vow went I promise… to care for you in sickness AND in health. Your spouse will be caring for you extra because of your sickness, sure… But don’t let it stop you from being generous in caring for them as they are healthy. Your care for them will look different. You won’t be able to care for them with as many physical actions (doing errands, yard work, cooking, etc), but you can still care for them by listening attentively when they speak, taking the time to ask questions and learn details about their work, friendships, etc. You can defer to them on date night by going to the restaurant they want to go to, or simply by watching the TV show that they love and you only tolerate. The more generous you both are to each other, the more joyful your marriage will be.
  9. Remember that while your spouse acts as your care-taker, their first role is to be your spouse. This health-journey, though it feels consuming, is only one part of your lives. Your marriage relationship is more important (and satisfying) than your care-taker relationship. Don’t forget what marriage is actually about — helping each other become the best version of yourselves, the person that you are meant to become.
  10. And finally… make time for fun with your spouse. In the midst of so many difficult moments, it can be easy to get stuck in all of the “goo”, but you need to have fun. You need to laugh. Go have dates! Invite friends over for a game night. Plan for a date immediately following a doctors appointment, so you have something to look forward to. Don’t let sickness consume your life. Go have fun!

This is just a start, dear friends. I’ve got lots of thoughts about marriage and sickness. It’s one of my favorite topics! The last two years have been the hardest years of my life (and Kevin’s too), but they have been the sweetest, richest, and most tender years. We’ve learned so much through necessity, and we have experienced great comfort in the midst of it.

My sweet hubby will soon be writing a post directly to your spouses, so stay tuned!

giving generously out of your need

My dear friends, if you have been in treatment or are considering treatment, you are well aware that it is costly. Your medical bills could easily be tens of thousands of dollars each year. And on top of that, you may have found it necessary to stop working (insert anxious emoticon here).

As I continue with the blog, I want to share with you everything I’ve learned about budgeting, insurance and paying for medical treatment. I believe the start place in talking about finances isn’t a list of practical steps… It’s about developing a mindset about money that makes us feel secure, instead of fearful.


When we act in faith, it’s like God replaces our fear with a yummy milkshake, and says, “I got this. You go relax.”

I still remember the first time I got a bill for $5,000 in the mail. It was from a trip to the ER that proved frustrating and fruitless. My insurance declined to pay any part of the $5,000. I also received two other sizable medical bills that day. AND I had just left my job after deciding that my body couldn’t keep up with it anymore. Guess how good I was feeling about our finances?

It knocked me over.

As I talked with my husband, Kevin, later that day, I was shocked (and irritated) that he was as cool as a cucumber after hearing the news. I don’t remember his exact words, but it was something along the lines of, “Jesus will take care of us.”

I wanted to be as peaceful as Kevin, but it wasn’t coming naturally. I started praying prayers like that man in Mark 9:24: “I do believe, help me overcome my unbelief!” And I also prayed, “Jesus, I know you have provided for me in the past, and I know that you have promised to take care of me always. I need you to show up for me. I’m scared.”

Within a few days, I received a call from a friend asking if I could bake a cake for a church event. I love baking cakes and wanted to help, but the thought of spending $15-$20 on ingredients made me freeze. I paused for a while on the phone and asked if I could get back to them later. Fear gripped me. BUT I had a check in my heart. I knew who I wanted to be in that moment — I wanted to be someone who was generous in the face of feeling like I didn’t have enough.

I think that when we feel like we don’t have “enough” in life, especially when we feel like we’re losing more and more (getting splinters from scratching the bottom of the barrel)… Our natural reaction is to scramble, to hoard, to penny-pinch.

I’m ALL FOR good stewardship with money. I’m ALL FOR living within our means, but I do think we always have something to give.

I decided to put my time and money into a lovely cake and gave it to my friends. In this very simply act of giving out of my need—of stepping out in faith that God would give me “enough”—my world changed. I started experiencing the peace my husband already had. I kept praying the prayers that I had before, but I felt more peace and excited anticipation about the future.

Within a few weeks, our financial situation changed drastically. We received small financial gifts from friends who had no idea what was going on. I applied for financial assistance with my huge medical bill, and received a 90% discount! It dropped from $5,000 to $500. And Kevin was asked to apply for his dream job (yes, they approached him!), and he was hired.

My friends, we were determined to believe that God is who He says is. We were determined to believe that God would provide for us, and that when we had it in our hearts to give, that we could give and still have enough. And it happened! We have continued with this posture of heart, and we have seen miraculous provision. Undeniable favor. Our medical expenses keep climbing, but our faith and peace keep climbing too… And more and more favor follows.

We are definitely not swimming in money. We don’t live extravagantly… But we do have everything we need, which is a miracle. And we have an incredible amount of things we want. We love feeling the freedom to give generously, because we are being provided for generously.

Here are the things I want you to take away:

  1. Jesus has provision for you. One of my favorite Bible stories is in 2 Kings 1:4-7. A widow comes to Elisha (God’s prophet in that time), and says that she has so many debts that her creditors will soon take her sons and sell them as slaves. He asks her how he can help and what she has in her house. Her reply is that she only has a bit of oil. He tells her to borrow as many jars as she can from her neighbors, to shut the doors, and then begin pouring out the little oil that she has into her jars. As she goes home and follows this instruction, the oil that she has multiplies. It keeps running, and she can’t fill the jars up fast enough! Her boys keep running and collecting jars, and she keeps pouring until every one of them is full. She then sells the oil, pays her debts, and is able to live off of the rest. Dear friends, the Lord cares for you deeply. He wants to provide for you, and I love that this story shows God’s generosity in that there is leftover money for her. He starts by using what she has, and making her little multiply. And to boot, He supplies more than she needs. When we ask for help and follow the instructions / promptings we receive, we can look forward to His provision and favor.
  2. The Lord honors us when we give what we can. In Mark 12:41-44, we can read the story of the poor widow who gave two mites (equalling half a penny) as an offering to the Lord. Jesus saw this and told His disciples that she gave more than all of the rich people around her, because she gave out of her poverty, not out of her abundance. God sees our offerings, and He knows when we are giving in faith. The smallness of our gift doesn’t make it “less”… It actually makes it more!
  3. God can use our “little” in a big way. Friends, you never have to worry about your offering being too small to matter. God loves using small beginnings to accomplish great things. In John 6:1-14, we can read about this awesome kingdom principle in action. Jesus was sitting with his disciples when a crowd of 5,000 men, plus their families, came to hear Him teach and to be healed. Jesus wanted to feed them, and His disciples found a little boy who was willing to offer up his five loaves of bread and two fish to help towards the meal. Jesus took that little offering, blessed it, and miraculously distributed it to EVERYONE. Every person ate their fill of bread and fish, and when it was all over, the disciples went around and collected 12 baskets of scraps. Jesus loves to use our little offerings to satisfy great needs. Just because you can’t offer a lot, don’t stop looking for ways to give. It can be a huge gift!
  4. Being generous is a tool to fight fear and increase your peace. Money and fear tend to go together. If we don’t have enough money, we’re afraid. If we have money, we’re afraid to lose it. For me, being generous breaks the hold that fear has on my life. In fact, when I start to feel anxious about money, I look for someone whom I can bless with cash or a gift card. It’s like coming to a fork in the road, and your options are fear or faith. I try to choose faith at every opportunity. Generosity goes one step further. It is faith in action, because it burns the bridge to “Maybe-I-can-do-this-on-my-own Land“… Generosity says, “Now I definitely can’t do this without you, Jesus.” I find that God meets me in amazing ways in that place, and I experience peace as I refocus on God, my provider, rather than trying to provide for myself.

There is so much more I could say, but for now, I leave you with this: God loves you so much. He wants to care for you, provide for you, use you to bless others, and to give you peace. As you give Him room to show up for you, as you trust Him with your need, He will be with you.

Addendum: Having a generous spirit is more than being generous in finances. Don’t you worry, I’ll touch on different opportunities to be generous in the future! I start with finances because I believe it is an important part of generosity that is easy to dismiss out of fear. If we start with faith, peace, and generosity as our foundation before getting into the practical application of medical finances, we will be steady in difficult circumstances. Practical applications alone aren’t worth much. We need to have heart and vision behind it!