Note: More often than not, the act of writing is an act of obedience and worship for me. Also, in this season, it often begins with a series of lamentations, or wailings and crying out. God faithfully shifts it to a place of praise, thanksgiving, and worship. I pray that it meets you in your pain and allows you also to ride the wave of pain into a place of redemption.
In this moment, I feel like my life is crashing: This delicate balance of a life.
I don’t know if this is a universal experience, but it is definitely mine. If all balances exactly as it should: If meds are stable and consistent, if sleep is plentiful, if my schedule is incredibly light, if I have enough support in parenting, if no emotional crises arise, if my relationships do not pose any strain or difficulty, if I have no additional responsibilities or stressors, then, and only then, will I be able to maintain a tolerable status quo in carrying the weight of my diseases and my family. If I am able to be gentle with myself, if everyone else is gentle, if my body does not present any additional symptoms or heightened issues, then I might have the opportunity to pour out a little bit here and there by means of writing, music, creativity, and social endeavors. Otherwise, I am merely riding the line between barely functioning and being completely home-bound.
Writing this, it doesn’t seem sustainable. I don’t realize how difficult my situation is until I sit down and actually document the difficulty of my journey. I see that as a grace. And I know of many others who feel this way, or worse. Also, I externally seem the “healthiest” I have been in years. Or, possibly, I am trying to ignore how unhealthy I am because, well, I’m sick of being aware of my illnesses. My body might be declaring, however, that my mental vacation from chronic illness treatment needs to reach a termination. It may be time to get back in the business of treating my physical body.
I grew weary of appointments. I was weary of doctors who cared, but couldn’t figure out how to help, and I was fed up with doctors who simply chose not to care because they couldn’t find an exact cause for my diseases.
Sometimes, in the course of long-term chronic illness, we need a vacation from treatment (if our body can handle it). Sometimes in chronic illness, I feel a bit too sick to care about treatment, to arrange rides, and to set up appointments. Sometimes, it just makes sense to wave a temporary white flag (stress temporarily). Or find a really good advocate.
I don’t know if this is wise or not. But I know that this winter, I needed a break. I’m weary. I’m exhausted. I feel a bit defeated and out of options. Wichita does not have specialists for my diagnoses, and traveling is completely exhausting. My whole body recoils just with the thought of extended car rides or the physical stress of flying.
I wanted to feel normal-ish for a bit. I wanted to not have to apologize for forgetting all of my symptoms, because, well, forgetting is one of my primary symptoms. I wanted not to have to defend being sick to doctors, and I wanted to avoid the ten strike-outs for every one positive hit that we have in our appointments. I wanted to take a break from being the constant patient, and just stop thinking so much about my body all the time. Honestly, I never want to go back to another doctor for the rest of my life. I am aware that this mindset is extreme and unrealistic.
So now here I am, in the limbo of incurable disease: In the tension between the promise and the healing, not sure what to cling to at the moment and struggling with the intangibility of God’s promises nestled in prayer times.
Despair and hopelessness are knocking loudly at my door, and I am barring the door with all the worship, prayer, joy points, and gratitude that I can find, but the depression of chronic illness seems to be shaking me to the core. I find myself at the junction of resignation and surrender.
I cannot resign. It doesn’t make sense, not with my history. Not with my own life pouring verse after verse of my own personal version of “Great is Thy Faithfulness.”
And yet the hopelessness keeps shaking my foundations. The crippling numbness of brain fog yields to bitter tears that won’t seem to stop: This isn’t the life that I anticipated.
I count the losses, and the list seems endless, as do the river of tears that seems to wash away my hope of promised healing. Can I do this anymore?
Or is this river of tears actually watering the soil of my faith?
And then I remember some words that sound eerily similar to the words cycling through my mind:
“My soul has been rejected from peace; I have forgotten happiness…My strength has perished, and so has my hope from the Lord.” (Lamentations 3:18)
And it wasn’t even David who wailed these words of a broken spirit. It was the prophet Jeremiah:
“I Remember my affliction and my wandering, the wormwood and the bitterness. Surely my soul remembers and is bowed down within me.”
Here I am, doubled over physically, bowed down emotionally and spiritually, dry-heaving with the same bitter pain I have encountered year after year. Each time, it feels as if there is no way I could survive it, physically, emotionally, or spiritually. Each time, it feels absolutely unconquerable, monumental, and so much larger than I am.
And yet, with this remembrance of this same pain, I recall something else as well, and therefore, a drop of hope lands on the dry, cracked floor of my bitter, broken soul:
“The Lord’s loving kindnesses indeed never cease, for His compassions never fail. They are new every morning; Great is Your faithfulness. The Lord is my portion; therefore, I have hope in Him.”
This isn’t my first rodeo with hopelessness; Nor will it be my last. But my Lord has met every round of despair with new life, restoration, hope, and healing.
This isn’t my first season of lamentation. And my good God, in His mercy, meets each tear with his tender touch, catching it with His jar of remembrance.
This isn’t the first time that I have encountered agony without clear answers. But I have learned as I have traveled around this mountain of suffering, that what my soul really needs is something much deeper than trite answers.
My broken, desperate soul needs presence. And the presence of my Lord is my good. He will not withhold His nearness from me in my hour of deepest need.
This isn’t my first encounter with future-tripping. And each time I get lost in the “what if’s” of the uncertain tomorrows, my God draws me back into His Kairos time, and I find Him in the infinite “now” of eternity. No uncertain future can touch the safety of God’s Kairos.
And so, I rest in the presence of the Good Father, in the now of eternity, trusting for grace to meet each challenge. But I am forever safe in God’s new compassion, in His great faithfulness, and His strength to meet each point of my own weakness.
This I recall to mind, and therefore I have hope.
As I taste and see that the Lord is good in this protected Kairos moment, the bitterness of despair leaves my tongue. And together, my Lord and I raise an Ebenezer and write a new verse to my life’s ballad of God’s great faithfulness.