"There's a trick to the graceful exit...We own what we learned back there. The experiences and the growth are grafted onto our lives. And when we exit, we can take ourselves along — quite gracefully."
I actually wrote a very similar version of this piece exactly eleven years ago this week. At that time, I had a herniated disc that was absolutely horrendous in terms of pain. Up to that point, I had never experienced that kind of pain in my life.
As we look to Good Friday and Resurrection Sunday this weekend, it seemed appropriate to dust it off and freshen it up a bit, not only for myself, but hopefully as a reminder for others.
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It's amazing how fast the walls close in when you're in pain, whether mentally, emotionally, or physically. Whatever form it may be, it can be all-consuming when you've been gutted by grief and loss.
This time one year ago ushered in some of the very darkest, most miserable days of my life.
Grief, loss, and pain were consuming thoughts.
I would wake up and think about them.
I would sit at the kitchen table and think about them.
I would brush my teeth and think about them.
I would go to bed at night and think about them.
I would walk and think about them.
I would breathe and think about them.
Every waking moment was spent thinking about myself, this hurt, and how to escape it. I lost track of the number of mental and emotional breakdowns I had, which usually resulted in me in a fetal position on my temporary bed at my parents' house, sobbing, barely able to breathe.
I just wanted it all to go away, telling myself it must be some sort of bad dream.
Ultimately, all I did was think about myself for days on end.
I forgot that a world around me existed or that anyone else around me might be in worse shape. I did nothing but live in my own little bubble, inside my own little head, unable to see past the end of my own nose and the yawning vortex stretched out before me that had become my life practically overnight.
Looking back on those days and months, I now keep thinking about Jesus, hanging on the cross, in sheer agony and suffering, in the kind of pain that makes mine look like a bucketful of sunshine and rainbows. And the one fact I simply cannot escape is this:
Even in the face of his impending mortal death, even in his deepest moment of torture and agony, Jesus still noticed the thief next to him.
Consider this: Think about the worst pain you ever have been in - mentally, emotionally, or physically. Now multiply that times a hundred. My guess is you didn't care about the rest of the world at that moment.
But then there's Jesus.
Pure selflessness even while in agony. Spikes driven into his hands, spear drawn through his side, a crown of thorns mashed onto his head, blood freely pouring out from seven places. His back looks like hamburger meat. His lungs are failing because he can't lift himself up enough to get a breath. And somehow - somehow - he still manages to notice the man crucified next to him, as noted in Luke 23:39-43:
One of the criminals who hung there hurled insults at [Jesus]: "Aren't you the Christ? Save yourself and us!" But the other criminal rebuked him. "Don't you fear God," he said, "since you are under the same sentence? We are punished justly, for we are getting what our deeds deserve. But this man has done nothing wrong."
Then he said, "Jesus, remember me when you come into your kingdom."
Jesus answered him, "I tell you the truth, today you will be with me in paradise."
Here's what I find so startling in that moment:
Jesus noticed the thief.
In that moment, when in his humanity he could have easily ignored either man hanging beside him, when he could have easily said, "Just get me off this cross and make it all go away," he turns to the thief and says, "I notice you. This is the very reason why I came - was to notice you. You are not forgotten. And today you will be with me in paradise."
How many moments have I missed along the way in the midst of all this pain? How often have I let it eclipse all thought of others around me and their own sorrowing and suffering, or even their joy and gladness? Here in this season of Lent and Passover, here in this season of giving up in order to gain, here in this season of turning our eyes to the cross - how often did I miss the person next to me?
Jesus knew even on the cross, even in his worst pain, that the pain he was enduring was never about him.
It was about the thief next to him.
And the miracle of miracles is that Jesus still notices the thief and the criminal in me today, the girl who wants to rob the world in order to escape her own pain, the girl who is far too often so very self-absorbed.
And he still turns to me and says, "Today, today, I notice you. I notice you in your grief, loss, and pain."
I want to be like Jesus.
I want to turn and notice the world around me, no matter my own pain, no matter my own heartache.
I don't want to get so myopic that all I do is focus on what's right in front me - and forget that this pain is temporary. I don't want to forget that someday I'll get to trade it all in, and stand in the light of God's glory, right next to the thief Jesus noticed on the cross next to him over 2,000 years ago.
"Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal." 2 Corinthians 4:16-18
I’m not much of a dreamer. Five- and ten-year plans don’t exist in my head. They maybe did when I was in college, and I was highly ambitious about my equestrian career. When that whole trajectory changed (for the better, I might add), dreaming about any sort of long-term plan just didn’t make sense in my mind anymore. At that point, just on the leading edge of my 20s, I had already experienced what happens when we make plans: God makes better ones. So, I didn’t really bother myself with dreams or dreaming after that. I wanted to live open-handed and trust that whatever came next was for the best.
Some years ago, I came across one of those conversation-starter question, designed to help launch or deepen social interactions, whether in a group of people or one-on-one: “What do you want to be celebrating one year from now?”
When I first read that question, someone might as well have hit a kill switch to my brain because I couldn’t think of a single event or goal in response to the question. I have zero imagination for such things, whether big or small. Maybe someone would have said, “One year from now, I want to be celebrating a promotion,” or “I want to be celebrating the birth of a baby,” or “I want to be celebrating my engagement,” etc. Some of you could answer that question without batting an eye, as you have a goal, a clear vision of some kind of what you want life to look like. Or at the very least a hazy vision, an underlying ambition, even if it’s not set against the backdrop of a calendar.
Me? [insert awkwardly long blank stare.]
I’ve never been one who envisioned being married by a certain age, having kids by a certain age, climbing some sort of career progression in a particular fashion, etc. Anything about long-term goals instantly created a loss of signal, like a snowy TV screen. In a culture where extroverts are prized and side hustles are the name of the game, anything less than a seemingly performative, self-promoting nature gets you left in the dust. I was left in the dust long ago - dreamless, aimless, social media-less, and seemingly ambitious-less.
The fact that I couldn’t ever be imaginative enough or enough of a dreamer to answer that question nagged me for years, almost haunted by it in my sleeping and definitely in my waking hours, creating this deeply-rooted insecurity that I was coasting through life because I couldn't ever answer that question. “What is wrong with me, and why do I struggle to answer such a seemingly innocuous question? I felt this deep need to conjure a response to this question, something clear and crisp, firm and tangible. It’s not a particularly complicated question, after all. What do you want to be true of your life one year from now? Sounds easy enough, right?
Crickets every time for me.
And then I found myself lying in a hospital bed on April 20, 2024, and answers to that question began pouring out. In my hazy memory of the moment, my family had left for the day, so no one else was around. The hospital room was quiet and dark, the only light pouring in was from the hallway and maybe the TV. By that point I had been moved out of the neuro critical care unit, and I was attached to far fewer wires and tubes. I was still struggling to text so I honestly don’t remember how I physically went about documenting the list.
An early prototype
But on that Saturday, April 20, 2024, I finally answered the question that had haunted me for years. My answers had nothing to do with getting married, having kids, getting a promotion, paying off debt, starting my own business, losing weight, or whatever else ends up on lists of dreams, all of which are good dreams.
The things I wanted to celebrate in a year didn’t even include “be cancer-free.” No, I had a very low bar for my dreams, my hoped-for celebrations. Mine were common and ordinary, yet I might as well have added a final bullet point that said, “Build your own rocket ship to the moon,” as all of the things I wanted to celebrate in a year felt like they were on the same playing field as getting to the moon, so far out of reach. I laid in that wildly uncomfortable hospital bed with thirty-one staples down my head, not daring to conjure up five- and ten-year plans because that felt absolutely terrifying when I couldn’t even fathom life past the next hour, the next day, or the next week. Even one year from then felt incredibly risky. I opened a new note in my phone and I haven't touched it since so that the timestamp would be preserved as proof.
What did I want to celebrate one year from April 20, 2024?
I want to celebrate
Not being in a hospital
Being able to type and have full use of my left arm
Being back at the gym
Being back in my own house
Driving again
Getting a tattoo
Having a full head of hair
Even now, I weep writing and re-reading that list, as the memories of those days hold so much pain, so much grief, and so much loss. I hadn't been able to answer that haunting question for years, and then when I do?
I was wishing for the simplest of things, like having hair and being able to type.
So, here we are, one year later, and I am celebrating almost everything on that list:
I was discharged from the hospital on April 22, 2024, and have not been back (as an admitted patient) since.
I am able to type and have full use of my left arm. There isn't a thing in the course of daily living that I find I can't do because of my arm or my fingers not working properly.
I started back to the gym in February of this year.
I moved out of my parents' and back to my own house last November.
I was cleared by my doctors to drive back roads last September and on the highway in November.
(The tattoo situation hasn't happened yet, but it's definitely on the post-chemo list of dreams. I've got a temporary stand-in for now thanks to my niece's inspiration of Bic's BodyMark temporary tattoo markers. How it looks in the photo above is basically what I want the permanent one to look like, using the words "Let it be Jesus," the song I laid claim to when everything started crashing down.)
After I lost one side of my hair to radiation and we shaved it last July, my hair was finally long enough here this February to get it cut for the first time in over a year. I do, indeed, have a full head of hair now.
And just like that, an unfathomable, out of reach, list of dreams has become reality since I wrote that note.
And it wasn't because I 'manifested' anything, 'set my intentions,' or put these things 'out into the universe.' That list wasn't about thinking positive thoughts and willing them into existence.
No, the answers became reality because of a gracious, kind, and sovereign God who made them so. This wasn't about me manifesting anything. I have said from the day of my diagnosis that this was going to be a Jesus story, not a cancer story. And the achievement of those desires, were certainly not because of my righteousness, but rather his great mercy (Daniel 9:18).
It was - and still is - a Jesus story. A story of a God who has done far more than I could ever ask, answer for myself, or imagine.
The last bullet point, a blank one, was unintentional, but for whatever reason, I left it at the time.
Maybe it was for all that was yet to come, the moments I hadn't yet experienced, but would want to be celebrating all the same:
Being seizure-free.
Remaining employed and working throughout this past year.
Making it through rehab appointments without crying.
I haven't really given much thought to what I want to celebrate one year from now. At least the thought of hours, days, and weeks feel less risky, but the years still do at times. So, for now, we'll keep the list of dreams simple:
"Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen" (Ephesians 3:20).
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Health Update
The self-advocacy victory pose.
I finally have in my possession the new anti-seizure medication! It was an instant change from the time I took my first dose - the drowsiness vanished! Now, I'm not suddenly unleashing myself on the world and going hog-wild with not being sucked in by a mid-morning medication-induced nap. However, this does now allow me to work consistently and once the day gets rolling, it stays rolling. I am filled with gratitude in light of this change, and it affirmed my persistence in lobbying as hard as I did in sorting through the mess of the healthcare system.
Then in the midst of all that, I got a toe infection. A toe infection, of all things. It's been a chronic problem child over the years, having had the nail removed twice already. The oncologist had me move quickly to get my hands on an antibiotic so that a small problem didn't become a big problem. Chemo would have been delayed if the infection hadn't gotten under control, but the antibiotic cleared it out and the podiatrist cleared me to forge ahead as scheduled.
I also had a neuropsychological evaluation. The results? I still have a brain and one that happens to work fairly well. I'm glad the experts could confirm. I had requested the evaluation awhile back (their wait list is incredibly long), just so I could have baseline data I could refer to in the future, if need be. Ideally, it would have been done before the craniotomy last April, but I didn't even know such a thing existed then and likely wouldn't have been able to get in anyway. It's a lengthy test, taking about three hours to complete. My brain was a little fried after needing to burn so much cognitive energy, but I made it. It was primarily a fact-finding mission, meant to establish a baseline of data. So, I won't be doing it again anytime in the near future.
I started round number eight of chemo this past week, and yesterday was the last dose. I had far less nausea this time, having implemented some changes in how to handle it. I haven't been as miserable as the last two cycles have been, but I'm still not out of the clear just yet. I usually give it another 5-7 days after the last dose before I really come up for air.
This week marks one year since my craniotomy (April 16), or as somebody said in a support group that I attended one time, "crani-versary." This to me is the true anniversary of when everything started, not the February anniversary of the diagnosis. This is when the deepest parts of grief and chaos were ushered in. I honestly don't know how I made it out of bed every day, surrounded mentally and emotionally by so much darkness. But God in his faithfulness and grace hoisted me out of bed, moment by moment. I am forever changed by his kindness.
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Bonus!
Unrelated but related, I have been listening to Rita Springer's newest album Fed by Ravens, and there is not a song on that album that I don't feel deep, deep in my soul. If you're looking for some new tunes, or if you feel like you're in your own wilderness season, give this song a listen, and then listen to the entire album. I've never heard another album like this in my life that is so visceral and raw, an honest depiction of the wilderness seasons of life for a Christ-follower.
