I’ve been in a fight for over a decade.
Sometimes I wonder if I’m fighting with Hope, wrestling in the desert through the dark of night, begging for a blessing. But this long-standing fight, this particular back and forth of daily cries and deep sighs and tears rolling down cheeks, is a fight for hope, a fight to hope, a fight of hope.
Even now, writing these words brings tears to my eyes. It’s true that hope heals but also? Hope hurts. It’s risky.
When you’ve hoped for something time after time, month after month, year after year, but then everything stays the same, it’s easy to become resigned. Numb. Disillusioned. Apathetic. “God is working in our waiting” sounds lovely until we’re actually waiting. Until things fall apart. Until the diagnosis, the phone call, the silence, the pain, the day after day of the same. It’s still true; it’s just harder to hold onto.
Twelve years ago, I had brain surgery. When they took out the tumor, the symptoms stopped and the insomnia began. It’s taken its toll in a thousand unseen ways, all of them worth it to still be here all these days, but there isn’t a word for the exhaustion that has become my normal. Sleep. All I want is to be able to sleep. To have the energy needed for each day, the bandwidth to show up for my people but not completely crash afterward, to experience rest in a body that tosses and turns until the sun rises and it’s time to throw the covers back and begin another day.
I read the story of the woman who bled for twelve years, who spent all she had and tried absolutely everything. I can feel it in my tired bones, the absolute desperation in her fingers, her mind, her heart, her broken body reaching for the fringe, one last grasp toward hope.
I hear it in the words of the two disciples as they left Jerusalem, disappointment and despair coloring their conversation as they walked toward the village of Emmaus. I can hear their confusion as they discuss the news that arrived that morning, their heartbreak as they share the story with the stranger who joined them on the road.
“We had our hopes up that He was the One,” they say. “We had hoped…” drifts away with the breeze as they put one dusty foot in front of another, unaware that Hope is literally walking them home.
I think of this as I make another doctor’s appointment, as I pull into the parking lot and dare to show up, knowing that hope might crash down again. After all, it’s been twelve sets of 365 and the only thing that seems to have changed is that I sleep less than ever before.
If I’m honest, at this point it would be easier to give up the fight and avoid the heartbreak of disappointment. There would be a relief in saying “it is what it is” and attempting to make the best of it, firmly shutting the door on the hopeful expectation that something will change. Twelve years of prayers, of tossing and turning in the dark and yawning throughout the day, tells me that choosing to hope again is not just risky—it’s foolish.
But when I remember the man who wrestled with God through the night and walked away with a limp, the woman who desperately reached out and was named “daughter,” the disciples who didn’t recognize Hope Himself until He blessed and broke the bread as they sat down for a meal, I see a God who doesn’t tease, a God who comes close and says hope won’t put us to shame. I don’t actually believe “it is what it is” . . . I believe it’s so much more, so much better. I believe the God of the entire universe became a baby in a womb and that what was once dead can rise and walk alongside two discouraged friends on a road to Emmaus. More than twelve years of history tells me the Author is good.
With everything in me, I believe God is healer. What I’ve come to see, though, is that healing doesn’t always look like what I’ve pictured. Sometimes the answer to our prayers is not a yes or a no but a Person. We get God, and in my desperate reaching, I’ve found Him to be enough. Will this year bring healing? Will I fight for hope only to watch it crash down? I don’t know, but I’ll risk finding out, trusting that Hope will be the anchor and no matter the coming waves, I will not sink.
There’s a mystery and a miracle in the blessing and the breaking, and while I’d choose just the blessing myself, I know Him most intimately in my heartbreak. It’s only when the One who truly broke reaches out and breaks the bread that they can truly see: Every hope that felt dashed was held in nail-scarred hands. Every prayer was heard. Every heartbreak was seen. Every tear was witnessed. They spoke in past tense, but Hope was present, always there, walking right beside. They were never alone.
Our waiting won’t be wasted. All that is broken will be mended. We will not be put to shame.
I’m getting my hopes up.
A note from Kaitlyn:
It’s been 12 years, to the very day, since I first heard the words “you have a brain tumor.” The surgery was successful, and I’m very grateful, but there’s more to the story I’ve purposely held close. With so much of my earlier health history find-able and public knowledge, I’ve felt pulled to be extra intentional in what, when, and how much health-related information I share online over the last ten or so years. For whatever reason, though, something shifted over the last few months and slowly, ever so slowly, I’ve sensed a nudge to begin writing this out little by little.
This, the long in-between of the story, where I’m fully confident it could change in an instant and I have no earthly idea if it ever will. This, the conscious decision to say it IS an in-between and not a forever. This, where I’ve prayed and my people have prayed and it just gets worse. This, the up and down of watching hope rise and crash. This, the finding that God does sustain, the very real proof that God’s mercies are always enough for the day, one day at a time.
Put simply, one of the lingering “after effects”—my everyday-normal looks like falling asleep as the sun begins to rise, then soon rising myself to begin the day. I’m perpetually exhausted and determined to remain expectant. I’m a person who cares about dates, a person smiling with tears in her eyes writing this, certain that it’s no mistake this post, this altar of remembrance and flag of hope planted firmly in the ground, was supposed to go live twelve years to the day everything shifted. We don’t pick our dates at (in)courage . . . In April, I felt it clearly: It’s time to try putting words around this ongoing fight for hope. In May, I started the post and began showing up for weekly medical appointments. I turned in the words, not realizing when they would be live (right here, today), and all I can say is that God is a God of the details. Nothing, absolutely nothing, is lost to Him. Nothing is beyond His sight, even the day on a calendar, and it’s a small thing but man it matters to know you’re seen.
Hope hurts, sometimes. That’s true. It’s risky. But it’s also an anchor in the waves, a Person who broke so that our heartbreak might be redeemed, our hope never put to shame. Emmanuel, walking us all the way home.
I’ve been in a fight for a decade. I’m getting my hopes up.
If today’s post resonated and you’d like more encouragement, Even If Not: Living, Loving, and Learning in the in Between will help you choose hope for tomorrow when today feels like a question mark. Learn to shift from the suspicion that God isn’t kind or present to the truth found in Scripture: on every single page of the story, God is with us and working all things for our good.
thank you so much for sharing this Kaitlyn I have suffered insomnia from the last 4 to 5 years can’t imagine having going through what you’ve gone through on top of all of that. your hope and encouragement and faith in God encourages inspires me and I will keep you in my prayers as I am finally starting to sleep better and pray that you will too
I was finally able to read your post this morning, and as others have commented, I felt God speaking to me through you. You verbalized what I have been dealing with for so long, only for me it has been over 50 years of migraine disease. My battle has had better times, but the past 25 years have been pretty awful. Having moved multiple times, I have seen specialists in Chicago, Witchita, Green Bay and others. There is no cure, only management. But at 20+ migraine days a month, management seems elusive at best.
I have had my small group members pray fervently for my healing, had elders anoint me with oil all to seemingly no effect. Prayers (and hope) for success of the latest treatment also have proven futile. But as you pointed out, healing can look a lot differently than we think. If I did not have God, if I did not have the reality of His presence and love in my life, I don’t know how I would have coped.
To all those out there who are dealing with similar struggles: He knows. He sees. He loves us all.
Thank you for this encouraging post. I love reading what you write. I know it’s not easy to be positive or vulnerable, but I appreciate it. Keep hoping, God sees us and He hears our prayers. Hugs.
Kaitlyn, your words were a gift to me as I read them tonight. I’ve struggled for years with back pain and peripheral neuropathy. My last spinal fusion, the fourth, was in 2019 and the primary goal was to stop pain shooting down the right leg and foot. My hope then was to awaken from surgery with only the pain of surgery. That didn’t happen. I was left with additional pain on my right side plus an increase in neuropathic discomforts in my right leg and foot. I’m still waiting for solutions. Sometimes I beg for improvement. Sometimes I cry and cry out for a change in my symptoms. Sometimes I simply hope for answers.
Your words activated a change in my way of looking at all these issues. I cannot thank you enough for sharing your story.
Thank you. Please know that every word you spoke was a word God spoke through to me. My life is a similar walk, of health battles and learning that God sustains, and though answers have not come…He has shown He is good and faithful even in the pain and the heartache and the long suffering.
The quick synapses ( as it could be a small book to write in the details) of my health is 2009 was the onset of some mystery neurological disease (mind you while we lived in China) that cause neurological sensitivities all up my left side. Whole host of issues for years and so many tests and doctors appointments. 2012 followed with autoimmune arthritis diagnosis. 2015 my oldest son was diagnosed with same one. 2017 my youngest also diagnosed with it. (This is extremely, extremely rare). And a huge battle ground there. Then 2020 when everyone else was fighting COVID in April I was being told I had three giant nodules in my left lung and one in my right. It took 4 months to diagnose it as fungal lung infection and I was basically bedridden by then. The infection was due to the arthritis medication and my asthma. It is also extremely rare.
And the past few years have been fighting it and not being able to treat my arthritis properly and also fighting additional issues such as Skin cancer…due to the fungal lung infection medication and a breast cancer scare). Culminating with a Steven Johnson’s reaction this past April (also extremely extremely rare) caused by the lone arthritis medication I could take with the fungal lung infection. (All this while my youngest son also having three years of just crazy health/genetic rare disease onset). And to top it…insomnia has become a new present addition for me.
What I have found in all of this valley walking, prayers prayed and cried out by me and so many is much of what you write above. Such truth and wisdom written in your words that I know was hard fought and wrestled for in your walk. Thank you for sharing it. Thank you for your honesty and authenticity. Thank you for blessing us with all of things as it is rare.
I have just learned recently from my doctors that there is not much I can be on to help my arthritis…basically all I can take is Tylenol for a disease that is literally attacking my joints. Found out Monday my knees are being damaged and there literally is nothing we can really do. It is stay alive and keep the fungal lung infection at bay or allow the arthritis to run crazy. We found out the week before that, that my lungs are not healing but they are stable. So, I have to be on a very powerful medication to keep them stable. And that reaction (Steven Johnson’s) that I thought had healed but after a little busier week and no real sleep…it is trying to pop out again. It is on my lip again and this is how it started and my life feels upside down and what I want to do, I just cannot…as I do not have the strength, the energy or the health to do it. But I can pray and God ministers so beautifully there. And I can pray for others.
Your words, were exactly what I needed to hear, and timed for exactly when I needed to read them. God is so good like that…so faithful to us in giving us what we need to read to see He is indeed sustaining us.
I pray your words (or God’s through you) will help others as much as they have blessed me. I have your book next to me on the sofa and plan to read it today. Those walking through long suffering need to stick together and they also need to follow the prompting of God of when to share. (I too have shared at times and other times held back..always listening to when God is saying post it…and He always blesses others and me by it) As in this hurting world, I have found people are desperate for the wisdom, the peace, the hope that He has been showing us in our difficult walks. It is sometimes the only purpose I can find in it.
Praying God is able to work through you in mighty ways and praying for full and complete healing for you. Again thank you for sharing boldly and fully and with such honesty and openness. Blessing my dear sister in Christ.
Kaitlyn, Thank you for sharing your honest struggles with hoping for hope. Sometimes it seems that the miracles we desire are not the miracles we get, yet we only see this in hindsight and through careful reflection.
You say it beautifully. Your fight is for hope, to hope, and of hope.