This past April marks one year since I stumbled into the ER, body trembling, muscles rigid, with a steady decline in coherency. Just days before I had started on an anti-depressant. I was in one of the darkest times of my life. Like I was swimming in the dark with no end in sight–no air, lungs burning, and hopelessness weighing me down like an anchor.
It seemed like an ill-fitting answer to prayer, that just two days later after begging to want to live, I was facing death.
It was just over a year ago that I sat in yet another doctor’s office as she sat on a stool, clipboard in hand, with a diagnosis of Postural Orthostatic Tachycardia Syndrome.
Everything she said after that faded out until the only thing I could hear was the rapid beating of my own heart pounding in my ears. At some point, she handed me a sheet of paper with a list that stretched from the tip-top of the page all the way down to the bottom.
A bullet point list of all the things I would need to do every day in order to get my condition stabilized.
Bullet point after bullet point, my eyes scanned the page as we made our way out to the car on a blistering hot day.
One after another,
like bricks set in mortar,
I felt exhaustion hit me as each item on that list thickened the barrier between me and normalcy.
And thus began the process of putting my life back together after it had crumbled down.
I haven’t written very much in the last year, aside from a few posts produced right after leaving the hospital. I have wondered why writing has become such a difficult task. Something I have to fight for. Something that doesn’t really feel right anymore. And I think I figured it out…
I cannot tell a story that is fake. I cannot write words that do not echo what is within my heart. But I also haven’t really wanted to tell this story…
This story isn’t what I ever imagined mine would be.
And I think I’ve been waiting for the story to reach some kind of resolution before telling it. I’m waiting for the melody to reach a crescendo so that it can fall back down peacefully, leaving the audience with the order and precise finish of the piece. Because there has to be a better ending than this, right? Surely it can’t end with, “and she lived the rest of her life in pain”?
I didn’t leave the hospital in April 2022, and bounce back to the life I had before or really anything close to it.
Chronic illness was the dissonant chord that struck my life, one that has not, and most likely will not, resolve. The melody, of course, plays on, despite being a little off-beat; despite the dissonance that leaves a lingering sense of unease in the pit of one’s stomach.
Every day holds some variation of pain–always.
Some are worse than others. But it’s always there.
And every day is spent minimizing my pain; managing my symptoms.
And I have struggled with bitterness in that.
I’ve struggled with all that I have lost to this illness that I am not promised recovery from–that will most likely stay with me my whole life. I mourn the times I’ve had to decline outings with friends because I knew if I went out, I wouldn’t be able to get out of bed for days afterward. That was the hardest part in the beginning–the missing out. Adjusting to a new way of living my day-to-day.
But as time has ticked by, reality has shifted to a different perspective, and suddenly there are things ahead that I hadn’t thought about before when all I could see were missed events and canceled date nights.
Because there is simply so much that is unknown about this debilitating condition.
It’s easy to spend my days wondering.
What if I regress back to the state of complete dysfunction I was in before?
What will my marriage look like during longer-term flare-ups, when my husband has to support us financially and physically?
And then the even scarier, twists-your-heart-until-it’s-bruised kind of questions…
What if I can’t have children?
Will I get to be a mom one day?
What if I have children, but am too sick to be the kind of mom I want to be?
It feels like I’ve been trying for so long to figure out how to live this new kind of life, and I still feel like I’ve only just begun to figure out the routines and rhythms necessary to function at my best.
But then again, doesn’t it seem like that is the rhythm of life? That the moment we think we’ve found reassuring restfulness in navigating less-than-ideal circumstances is the exact moment we’re thrown off beat all over again?
But I realized something as I looked back at the weeks leading up to my hospitalization from last year.
I asked God to make me want to live.
And I’ve never wanted to live more.
My prayer did not go unanswered.
This chronic illness–it’s not a punishment or a curse.
It saved me from myself. It has forced me into humility as I have had to accept new limitations–physically and mentally. It has instilled in me compassion and gratitude that I wouldn’t have without it.
This story doesn’t have an ending yet. I don’t know where it’s going. Truth be told, the past few weeks have been wearisome as I’ve battled one of the worst flare-ups I’ve had this year. But it has forced me to trust the Lord with my family’s future. He has walked with me through the fire, through deep waters.
Sometimes, I find myself wanting Jesus to be my telescope instead of my compass. He promises to guide me, direct me, stay with me as I walk through every valley, and that’s fine and everything, but I just want to scan the horizon so that I can know where I’m headed and–more importantly–what’s headed towards me.
A mind stayed on Him is a mind steadied, a soul stilled.
His Word–His promises–guide me like a compass through every minute of uncertainty, of pain, of disappointment, of overwhelm.
I have found that even in the most unsteady of circumstances, what remains at the end of the day is the truth that He is always faithful.
Faithful to always provide me with the grace and strength, moment-to-moment. Even when I feel the debilitating pain seep into my bones, stretching its way through my muscles and joints. Even when I do all the things I am supposed to do–take the medications, follow the right nutrition and exercise plan…
I have checked off all the items on that bullet-point list for as many days as humanly possible for over a year now, and still, there are days when I can’t even get out of bed.
Even in my best attempts, I cannot escape a broken world, where bodies ache and break, and hearts are bruised by gut-punch “what-ifs,” and questions that knot up my stomach in the middle of the night. Coming to terms with that has been anything but easy.
I can often be found chasing perspective.
I will unravel myself until I can find purpose in my pain.
But sometimes… pain simply is.
And the story–the song–of my pain does not need to be put into poetic words for it to still matter, for it to have purpose, for God to be good. And I, in my pain, do not need to be a poet to matter, to have purpose, and for God to still be good.
Sometimes, the only perspective to be found is the kind found on our knees, wounded and bleeding hands wrapped around a bitter cup of suffering, right next to our Savior, The One who knows, more than anything, the bitter taste of sorrow. Sometimes, all I have to say to Jesus is that I’m tired. I’m in pain. I’m overwhelmed. I’m confused. And He listens, just as His Father listened to Him, and He weeps with me, for me; He folds His scarred hands over mine.
I want to cling to the fringe of His garment; lie in the healing power of His shadow, and beg Him to remove the pain. And I do.
But still, the cup remains.
Yet, so does my Savior.
No matter how dark the darkness gets, no matter the clouds that roll in, and no matter how deep the valley gets, still He remains firmly by my side. Not once abandoning me in my despair.
You see, I’m no longer waiting to be healed.
That isn’t to say I don’t pray to be healed, or ask daily that God strengthen my body and help it to function; to give me the energy I need for the day; to give me the grace I need to handle the pain. I do.
And I believe He does.
He gives me good days–sometimes good weeks, good months. And maybe, yes, maybe, one day I will wake up and realize my body has indeed been healed.
But it is no longer something I’m waiting on so that I can begin living.
I don’t know if this is something God will take from me this side of Heaven.
But I do know that His power is made perfect in my weakness, and in my weakness is where I find strength.
I wanted to want to live.
Now I do.
And through my chronic illness–through my disability–I have the unique opportunity to empathize and encourage those in trials.
My hope is not in a change in circumstance, it does not rest on an ending I am satisfied with.
My hope–true Hope–lies within knowing and believing that His promises are true, and that they will be fulfilled. Because it is only through Him that there is any satisfaction to be found.
I don’t know what you’re waiting on. I don’t know the limitations you face, be it a physical disability, struggles with mental health, financial stress, a broken heart, or simply a worn-out soul searching for a bit of peace. I don’t know what kind of ending you’re hoping for or what kind of “I-never-wanted-this” story you’re living.
Your hope can be found today, not in what you wish would happen, but in what He wills and promises to fulfill.
There is much to be told of this story God has been writing. I’ve avoided writing it because I had hoped for so long that the trajectory of the plot would shift a little. But I think I can write about it now because I think the humility of my disability has enabled me to see a life beyond getting the ending I wanted and instead rejoicing in the present, and in the gifts He has given me now.
Like wildflowers, I collect each blooming blessing and tuck them between the bricks of the wall I once saw as a prison, but now see as a canvas upon which buckets and buckets of grace can be poured out, turning it into a mosaic of unexpected miracles.
My gaze has shifted from the horizon to The Son.
It’s not about the healing anymore.
It’s about knowing the Healer.
Pain colliding with Peace;
hurt with Hope;
loss with Light;
all tied up with grace that always,
at the end of every broken, defeating day, sustains me.
Slowly, steadily, no matter the condition of my body, I find a soul made well.
“When peace like a river attendeth my way;
when sorrows like sea billows roll;
whatever my lot, You have taught me to say:
‘it is well, it is well with my soul.'”