“When life is hard, remember that we are not the first to ask ‘Is there no other way?’”
A poet’s soul is a strange thing.
Of a depth unknown, save to its maker. Curved by feeling and branching wide beneath a burden that is the world itself, who can understand it?
Yet like Anne Shirley, I have come to suspect that kindred spirits are not now so rare as I used to think, and though the poet may spend his days trying to capture what escapes the tongue and translate the heart, he is aware that even the least poetic of eyes knows what it looks like to see visions shatter.
What if I were to ask you what it sounded like to hear a dream die, or what faith feels like as it stretches to its tensile limits, reaching for a hope that seems to be receding like the betrayal of the tide?
Somewhere—caught up in those tangles, you’re likely to find me.
On any given day I wage war.
Trapped in a weakened body, assaulted by feeling, and caught in a fierce and ongoing brawl between a burdened heart and a soul dedicated to God.
It’s taken me months to even begin to give shape to the madness that has slowly descended, and I may never be able to fully paint an accurate image for others to hold. But despite my reservations regarding vulnerability, here’s a brief account concerning my lack of online presence, the delay of my publishing endeavors, and my general withdrawal from life for the time being.
On the quiet days, when the smoke and skirmishes are somewhat distant, I’m slowly shaping the courage to say:
I know I haven’t blogged like I said I would, and the cyber-dust that coats my story files is likely centimeters thick. I know I said I’d publish my next book soon, and I’m sorry I haven’t crafted one word in months. I’ve become the negligent horse owner that I swore I would never allow to develop, and the tornado carnage that is several places of the house have been unattended since December. My once marathon-ready creative muscles have slowly shrunken on the couch in front of a TV screen that would rather watch Food Network re-runs than write, because the effort it would demand from me has suddenly become too much.
Confused? Me too. But let me try and explain.
After months and months of weird diets, doctor’s visits, innumerable blood draws, and many prayers, I left Mayo Clinic with the somewhat nebulous, yet still ominous diagnosis of dysautonomia, one that threatened to impact my life the way a cluster of mounting clouds turns to steel and thunder. Vague though its presence is, it warns you of its power and declares that you haven’t even yet begun to feel the full force of its heaviness.
Now stricken with a chronic and so-far incurable illness, the Captain, the man cub, and I clumsily navigate through the world of POTS during pregnancy, while trying to maintain some shred of normalcy wherever we can.
It all sounds quite melodramatic. Trust me, I know. An appraisal of my appearance likely won’t yield any evidence other than the often weary face of a mom or other hard worker. Besides, I’m also an accomplished performer (read: faker), and I wear the mask of “just fine thanks” very well. That’s because the ugliness of illness doesn’t appear on my skin, it’s in my blood, in my heart rate, in my stomach, and in my brain. Add to that the reality of pregnancy, and each symptom nearly doubles in discomfort.
I smiled and chatted with the barista at the local coffee shop today, but I’m sure he couldn’t see that I was literally counting the seconds until I could grab my iced coffee and collapse onto a nearby couch, because I was afraid I was going to pass out.
Even as our little family prays its way through each day, and sometimes each night, discouragement and confusion are a constant threat. It seems more than reasonable to accept that important lessons often take a season of stretching and growing to fully learn, for the heart to embrace. Yet, somehow when it comes to the Christian walk, it feels as though there’s tremendous pressure to read a few verses on joy and instantly demonstrate a flood of trust and contentment lest our fellow church-goers look down on our lack of faith.
I do trust, most wholeheartedly, but I am still learning, and this journey is painfully difficult. I ask God to help my unbelief, because I’m just not strong enough.
I want desperately to accept these life changes and be on my merry Christian way.
But the truth is—I’m heartbroken.
It hurts to constantly be on the phone enlisting the help of others to take care my beautiful boy, when I want nothing more than to be the mommy he needs, the one who isn’t too exhausted to chase him around the backyard with the three legged dog, or one who bears a patience that isn’t constantly harassed by a body that complains of an illness that few can fully understand.
I ache to fire off e-mails to contacts in the equestrian community querying if anyone is in the market for a sweet horse, the same hazel coated pearl that I scrimped, saved, sweated, hoped, dreamed, and prayed for since I was eleven years old. The prize that I fought so hard to love and learn with, and for which I once gave almost every cent I owned.
Soon he will likely disappear into the back of another’s big white trailer and be hauled away by a soul who might never understand that he was once the answer to a little girl’s prayers.
I gaze at the hiking trails from my porch and sigh as I turn back to my doctor-recommended recumbent bike (i.e. an uninspiring treadmill with pedals). Frozen meals now dominate the majority of the freezer space, and worst of all, I rarely write.
When the Captain and I prayerfully sought publication for my first novel, we were at peace with what felt like God’s blessing. Therefore we didn’t imagine pouring blood, sweat, and tears into a publishing process after years upon years of prayer and labor, only to grind to a painful halt smack dab in the very middle of it all.
Books events, consistent work, never ending miscommunication with publishing representatives—in no time it was all too much, and it hurts even more to admit it, to have tried my hardest and failed to succeed.
It’s an ongoing wrestling match to consider abandoning the profession I’ve spent so long creating, but the worst blow was far harder, and that was to tuck away everything else as well—all the writing, all the stories, all the words, all of it, because my mind and body were simply too weak and tired to keep up.
In summation, I’m truly not sure how to condense all that’s happened and explain the details of our situation. There is still so much we don’t know, and whether or not I’ll be able to resume any part of my so-called normal life after pregnancy remains to be seen. At the moment the future is even more of a mystery than feels typical, and that is hard.
I have not given up, and I trust my Lord absolutely. I don’t know what he is doing, but I know that he is good, and it’s that truth that I will continue to rest on.
However, if you see me, be gentle with my and have patience. I still feel as though I’ve been robbed of some of the most personal and important pieces of myself, and it’s often unbearably painful to think that I may never live, work, write, ride, or anything else the same way again. Some of my most precious dreams are dying in my arms, and I do not yet know if or how they may be resurrected.
I hope to continue working on my novel’s sequel, and I am actively exercising in ways that may relieve me of my POTS someday. But most days I am somewhere along the difficult cycle of hurting, healing, and then hurting all over again, and I feel as though I am merely an observer on the sidelines, not simply resting but watching life go by without me.
Bear with me, if you dare. I plan on saving whatever drops of energy I can in order to continue writing, however inconsistently.
Prayers are appreciated, fellowship is treasured, and for the time being cookie dough will continue to be praised for its emotional if not entirely physical health benefits.
For now we’ll keep fighting, and I’ll continue to write these “letters” whenever I’m able. They say that dry days are kindling for burning bushes, for holy experiences with God (Voskamp).
You may find me knitting a baby blanket while the man cub splashes in his redneck swimming pool on the porch, or you might see the Captain and I quietly holding hands and swinging side by side on a hammock in the dark.
We’re a bit beaten up at the moment, but we’re also choosing to trust in the one who is able to raise the dead, and if this letter reaches you on the homefront, then you can tell anyone straight from our hearts:
God is still good, and he is on the move.
For more information on POTS and dysautonomia, you're welcome to check out a few of these informational resources:
All work subject to copyright by the author. Use by permission only. 2016.
Images via: M.J. Neal