For the Days When Hope Feels Risky…
On health-related things, a rollercoaster that doesn't seem to end, and a thread woven through.
Last Wednesday I made a mid-afternoon game-time decision to press pause on this scheduled email, and then pinned this note in the comments of the corresponding IG post:
As I continue to watch the news with Hurricane Milton and receive updates from my family (they are in South Florida), I feel the need to hold onto tonight’s email, being sensitive to the timing. I’ll keep it in drafts and likely send next week in lieu of Thursday Things! Thanks for understanding, and please pray for those impacted by this storm. As of their last messages, my family is all safe! There were many tornados just a few miles away, though, and the damage pre-hurricane arrival is… well, there’s a full-size dumpster on a roof, if that gives you an idea. The promised email will arrive… but not tonight. Tonight we pray.
My family is okay and I’m very, very grateful. If you were impacted by hurricanes Helene and/or Milton, please send an email my way. I’d love to pray for you specifically and help however I can. And now, in lieu of Thursday Things (100% yes I already have a list of Things to share with you next time) — a personal piece of writing you may recognize and a timeline with a thread.
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.
Fourteen years ago, I had brain surgery. When they took out the tumor, the symptoms stopped and chronic 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 daily 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 fourteen 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. Fourteen 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 fourteen 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.
I’ll share a free lock screen of this quote & design on my Instagram Stories tonight!
For twelve years, my in-person people knew the nightly struggle (and therefore daily deep exhaustion) of chronic insomnia, but I held it close, away from pixelated screens. In 2022, I wrote about it for real, and though it’s a small glimpse of a much larger piece of my story that I’m still navigating on the daily, sharing that glimpse felt wildly vulnerable and risky.1 Last night I sat down to write out the timeline of this specific piece ^ and was somewhat amazed by both the rollercoaster and the thread woven through. Do you see it? (Buckle in or just exit the browser now, friend, because the following is a fraction of two years but also this thread has seen some things.)
April 2022—I felt it clearly: It’s time to try putting words around this ongoing fight for hope.
May 2022—I began showing up for weekly medical appointments. Every single time, I took a parking lot picture as a prayer, as a stone of remembrance taken in advance and in belief. One by one, I added them to an iPhone album titled “get your hopes up”. (It feels uncomfy to share a bunch of selfies, but maybe it’ll spark an album of your own. I’m still so glad I have them—the ones pictured above and many more.) I started writing the article and turned in the words, not realizing they would be published the same day I first heard “you have a brain tumor” in 2010. (God is a God of the details. 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.)
June 2022—The piece is published.
July 2022—I know the weekly treatment isn’t working.
August 2022—I discover it isn’t just not-working… it did what literally never crossed my mind: it made things significantly, and possibly permanently, worse. But… with more time and more treatments it might reverse to pre-May, and so I continue.
Late September 2022—It stayed stuck on worse. I stop.
October 2022—I take what must have been twenty deep breaths and click post on this update. I try so hard to not be crushed by crushed hope, to quietly adjust to the new-worse, to bring the crushed-ness to Jesus and let Him heal that part of me, even as the chronic illness remains, so I can get my hopes up again.
January 2023—These 4:04am words arrived, a balm and an invitation to both carry hope and be carried by Hope into another year.
February 2023—I filled a prescription on the way home from the Ash Wednesday service, snapped a picture in the dairy aisle at the grocery store, and decided to post about swallowing a tiny pill because it actually meant I was swallowing hope at the start of an already-present Lent.
A year would pass before I shared about how sometimes Lent lingers, wrote about the wild rollercoaster of hope and how the prescription helped and then it didn’t, how it didn’t reverse the worse but even Lent has a time limit. I knew pretty quickly, after nearly a full year of hope rising and falling on a near-weekly basis, and it now being public, that I needed time before sharing any other health-related words online. I still had hope but it was a flicker, and it needed to be held gently, care-fully, tended to with tenderness and so much grace and space.
But meanwhile, wouldn’t you know it, April 2023—The piece that began a year prior, the published words from June 2022, landed in the Target checkout aisle. And at Walmart. And Publix. And Barnes & Noble. I ugly cried when I found out and my jaw actually, literally, dropped. I didn’t know the article was even being considered, let alone chosen or edited by someone, until it was at the printer, a done deal. I filmed this with hope AND with the knowledge that the latest “maybe this will work” hadn’t worked, knowing I would go then quiet on Health Stuff for a while AND 100% meaning and believing every. single. word. of the caption, the video, the piece.
May 2023-August 20242—There were a couple updates shared with All The Things subscribers, mostly on Zoom calls that were more personal than a pixelated post, but nothing public beyond an occasional line that could be health-related but also might not be. ;)
(Example: For When You Find Yourself Asking God “How Much Longer?” has one sentence that long-time readers will know might be about chronic insomnia, but it isn’t named and the post isn’t about health. (The real-real: Health might be assumed, but I wrote it about a whole ‘nother thing. Waiting rooms aren’t always literal amen?)
But, backtrack quietly, June 2024—I made a “new patient appointment.”
July 2024—I began going to a new-to-me doctor three times a week. (This isn’t meant to be a plug for All The Things, but I will take any chance to keep on saying a massive public thank-you to paid subscribers. The doctor is outside of my insurance, and the financial support through ATT has helped pay multiple medical bills, making a way for me to keep walking through the doctor’s office door, and to me, that monthly kindness is woven directly into the thread of hope.)
July 2024—Lisa Appelo kindly invites me to share about “hope in grief” sometime in October, and I say yes.
August 2024—I write the words below the day after receiving long-awaited results, in an All The Things post titled “A bit of a health update.”
My hope needed time to heal before risking again, before walking into another waiting room, before handing over my card and my body and my hope that this, maybe this, could it be this, that offers an answer of some kind? Brings information, even if it doesn’t bring relief? … How many times can I include the word hope here, I’m thinking to myself right now. But in some ways, that’s what felt like it was on the line. It had crashed and burned and I couldn’t forget it, couldn’t undo or deny the addition and multiplication that haunted every day.
Hope never fully disappeared, but it shrank small, a flicker in the dark. A flicker is still a flame, though, a candle in the night. And so I drive hours and hours every week. I park in this spot. I open the glass door. I check-in and I sit down under the literal word hope and I wait for my name to be called.
I show up, which is another way of saying I get my hopes up.
September 2024—I receive another round of test results + share an “update to the update” in All The Things. It is, shall we say, another loop on the rollercoaster.
October 9th, 2024—those April and June and April again words are published on Lisa’s site, and I’m amazed yet again, humbled once again, declaring them forever and ever amen—even as I hold out hope and hold onto Hope for more tests coming this month. Maybe this wild rollercoaster is slowly coming to a deeply desired stop? Maybe tomorrow will be the end of a terribly lengthy timeline that, even in this piece, is a mere glimpse of two years out of fourteen, just a glance at 14x365? Maybe I’m nearly to the day that the loop of up/down/up/down, worse/better and back again, disappears and all those metaphors become reality? The storm stills. The waves stop. The clouds part. (The woman sleeps.) (The chronic pain disappears.) Et cetera.
Maybe. Could be. I have not one iota of a clue as to the when, or if there will be a when before eternity, but I have my hopes up. Because you see the thread, right? How yes, it loops month after month and literal April over April, August results over August results… but the constant, if we’re going to string the metaphor all the way out, is that Hope rode the ride and refused to get off. Hope held on, kept a firm grip on me, tended to the flicker when that was all that remained, and will do so again if the morning brings mourning and the weight of waiting grows, if we keep going around another loop and if the waves keep coming…
We will and they will, if not with chronic illness, then with any of a dozen other things. That’s the honest truth of it. But I think that’s why I love this particular truth so much, why I stubbornly keep weaving it in everywhere and likely won’t stop until “how much longer?” is no longer: Hope will hold and will not put us to shame. God will bring us all the way home.
So, yes. I’m getting my hopes up.
Join me? 💛
I could list a dozen specific reasons why, but a major one is knowing unrequested medical advice from strangers who do not actually know your medical history is very likely to suddenly come your way. It happens in-person On The Regular, but we all know how Internet comment sections and inboxes can fill with opinions/thoughts/suggestions/advice. Unrequested medical thoughts are not helpful—they are exhausting and frustrating. I could easily write 4,000 words on that… I have Big Feelings and Many Thoughts, 14 years into being the recipient of “fix it” words. (Covering something with “but it’s well-intentioned” doesn’t mean it’s actually helpful or kind. But I better stop myself before I really get going.) Suffice it to say, I knew Y’ALL would be deeply kind and thoughtful—that you wouldn’t try to “fix” me, wouldn’t throw out a quick “have you tried melatonin though?” like it never occurred to me/my doctors all this time (help me Jesus), and would instead wait with me, hope with me, and pray for wisdom for those with my medical records and manna for each new day.—but others? Strangers in Internet comment sections? They might not be and, well, see: vulnerable and risky.
If it feels like you’re running low on hope today, I’m sitting here hoping that this specific line is an encouragement. It would be easy to miss that a year passed… but it did. The actual hardest year I’ve walked through, at that. I’m obviously leaving a million and five things—health related and not—out of this timeline because Word Count… but friend, time takes time. Give it time. Give yourself time. Give hope rising time. It will. You will. Hope might need time to heal, but you are still here and the thread will keep running through because Hope Himself isn’t going to run. He will remain. He will carry through. Hope will hold onto you.
Thank you for this 🤍
Thank you! I, too, have been in a fight: chronic fatigue syndrome and Fibromyalgia. Their constant presence means every morning I awake more tired than when I went to bed and days are spent feeling desperate to sleep away the fatigue. And yet sleep doesn't always come. It means "tired" means something different to me (us). The word doesn't suffice...its bone- crushing, a total preoccupation, a lens through which I/we see everything. We carefully measure out the energy needed for every activity: a shower, dinner with friends, a walk to the mailbox.
I empathize deeply with you. Insomnia is cruel and I ache for you to experience deep, restorative sleep. I'll add you to my prayer people. Your words are beautiful. Thank you for your transparency. Sue