Life in the Multifaceted Landscape of Dolightfulness

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I thought I had to be the good patient.  And the cheerful, happy, grateful wife.  I stopped being able to tell the truth because I was so desperate to live.  And [I] also [needed to] kind of earn people's love because I thought [my life] is too awful.  People might leave.  I needed to practice telling the truth."[1]

One of the reasons for starting Life: In the Blink of an Eye was to boldly share the truth of quotidian health issues.  To be a small but mighty voice for those whose daily life feels overshadowed by a broken body.  Yet to prove that all stories matter… sharing my truth of my own story and helping others find the voice to share their truth.  Truth that weakly but confidently proclaims, "My God is more than my broken body!" I still don't fully know what that looks like.  But I'm committed to this journey with the Lord.  Much of life's culture is geared toward the healthy, able-bodied person and the realities of life facing an illness day in, and day out are lost to most.  This leaves those fighting illness feeling alone, unseen, unknown, and fearful.  Research group, RAND, estimates that 30 million adults in the US suffer from five or more chronic illnesses.[2]  I want to be bold enough to share the highs and lows.  I want to have a platform – no matter how small – to share the stories of those whose lives have been turned upside down… In The Blink of an Eye. 

Why?  Because the Gospel is community.  The Gospel is Hope.  The Gospel is Truth.  The Gospel is telling our stories.  My daily cry to the Father is, "If I'm going to walk this arduous path, make it worth it for Your glory and someone else's encouragement!" "One day, you will tell your story of how you overcame what you went through," encourages Brene Brown, "and it will be someone else's survival guide." Because He has been faithful in the past, I know He will be faithful moving forward.  So, peering ahead and gazing back, I continue to share on LITBOAE.  Even when I feel I have nothing to share.   Even when all I have to share feels doleful and downcast, I pray that a survival guide might emerge in the pages of my truthful storytelling. 

For so many years, I needed to answer, "How are you, Sarah-Marie?" with a bright and cheery response.  I spent hours googling "positive responses when life always hurts." I didn't want to lie, but I felt responsible for showing joy in every situation!  I made it my life's mission to show others how to be joyful during severe heartbreak.  In reality, though, I was learning how to lie with Southern grace and charm.  Eventually, I couldn't do it anymore.  I was overcome with guilt and battled depression because I wasn't feeling this deep-rooted and contended spring of joy in my chronic illness and pain.  I convinced myself that I wasn't accepting the grace of the Lord fully or that I would, obviously, be joyful in all things.  I pressured myself to fake it until I could figure out how to make it. 

The more I worked on finding this continuous fountain of never-ending joy in the Lord, the more He showered me with the gentle freedom to rest in His love.   The more I dug deep into my faith, examining the lives of those fellow pilgrims struggling around me, the more I began to see that life wasn't one-emotional.  Instead, it is lived with multiple emotions simultaneously.  This concept of "twin emotional realms" is where I began to navigate life.  Life with different emotions - opposing sentiments even - shapes my daily journey. 

I first saw this concept in Scripture in the book of Ezra.  Hannah Brencher's "The Monday Club" hit my inbox one day and challenged my Biblical worldview with Ezra. 

"And all the people shouted with a great shout when they praised the Lord, because the foundation of the house of the Lord was laid.  But many of the priests and Levites and heads of fathers' houses, old men who had seen the first house, wept with a loud voice when they saw the foundation of this house being laid, though many shouted aloud for joy, so that the people could not distinguish the sound of the joyful shout from the sound of the people's weeping, for the people shouted with a great shout, and the sound was heard far away."[3]

I've shared some of my takeaways from these verses in past writings.  But for those who needed a refresher, the Jews had finally been allowed to return to Jerusalem after their years of captivity in Babylon.  King Cyrus had sent supplies to help them rebuild.  At long last, the Temple was rebuilt.  Sheer joy, right?  Supreme excitement that the long-awaited Temple was finally restored!  After all, this wasn't just about a physical building.  This Temple represented the coming of God to live within the ranks of His people again.  This was the presence of God coming back to His people.  But within the ranks of God's chosen, the shouts of joy and tears of sorrow were intermixed into one loud presentation of emotions! 

I began studying this duo-emotional plane, which resonated in my heart.  God didn't ask me to be joyful all the time.  After all, there is a season for everything.[4]  And joy comes in the morning.[5]  I began to understand those who had coined words trying to express how to live on this plane.  Hope Heals calls it "The good-hard life." Kate Bowler often signs off to her podcast listeners with, "Have a beautiful, terrible day!" 

"I think there is pressure on people to turn every negative into a positive," says Irish author Mariam Keyes, "but we should be allowed to say, "I went through something really strange and awful, and it has altered me forever."

So, the reality today is that my life was turned upside down - in the blink of an eye - almost seven years ago.  It's been "really strange and awful, and it has altered me forever."[6]  I feel stuck in the "motivationless vortex of blahness."[7]  Daily life is a challenge.  Add "extra" health struggles - such as a virus or acute event -  and the complexities of life magnify.  Since mid-November, my cardiopulmonary systems have been on the struggle bus.  Since 2024 took office, I have lived in my recliner, barely able to take three or four steps at a time.  The days turn into nights, and nights blend into the next day.  The challenge to find any joy is hard.  My brain is confused and struggles to put together a seamless thought.  I work to fill my mind with His Truth by playing instrumental hymns and worship music.[8]  Listening to audiobooks or podcasts requires too much brain fuel.  I have (and continue to need) assistance with almost all activities of daily living (ADLs).  Everything in me begins feeling like a burden to those around me.  I have nothing to offer back to my family – let alone society at large.  I find myself staring at the wall, just trying to breathe. 

"God, life hurts.  I'm tired.  I'm weary.  I'm done.  Again.  Why do I find myself here yet again?  I want to find #LITBOAEglimmers in life.  But I'm just too tired to even look for them.  When will it get better?  When will I be encouraged?"

I try to stand physically but can't.  My knees buckle under my weight.  Dad grabs me and keeps me from falling.  Together, on the count of three, we pulled up from the wheelchair and slowly transitioned to my electric standing chair.  I'm winded and barely able to catch my breath as I cough and my lungs rattle like a baby toy.  I'm done for in every way. 

Over the last few weeks, I've been texting with a friend who relies on BiPap for her every breath.  She texts me with one thumb that still works at random.  I look through a tiny porthole that is her life.  I'm amazed at her unending reliance on Him for everything.  I'm humbled at her honesty.  She gets it.   This delicate plane of multiple contradictory emotions.  We throw some words around in our text convo, trying to express how we feel.  Words like ambivalent, bittersweet, tragicomic, melancholy, saudade, reflective, or conflicted. 

In the dark of night or stillness of the day, I wonder how this tragicomic, good-hard, beautiful, terrible life is supposed to be lived.  How does God receive glory in my muddled ashes?  Where is God when I don't wanna anymore? 

"God, I will wake up today and move numbly into each new hour.  I will fill my lungs with the air of an undone, unfinished, never-before-seen day, entirely certain of how I will feel when it ends -  tired, bored, unchanged.  God, even my best efforts, my sacrificial love, my diligent work don't stir up anything like the rush of accomplishment.  Whatever felt like meaning isn't meaningful anymore, at least not today.  One minute, I want to change everything, and the next, I want to crawl back into bed.  But if I'm honest, how much of my actual day-to-day life could I change even if I wanted to?  Lord, this is the simplest prayer.  Make it matter again.  Color my grayscale vision with every shade of meaning.  Blues, and purples, and lilacs for purpose.  Reds and pinks for every kind of love.  Yellows for insights and ideas that sparkle.  And if once cherished dreams need to fade, let them fade.  Let me not imagine that each one of my plans must glue my future together.  Surprise me!  I regret saying that already but let me come alive to the wonder of this day.[9]

Welcome again to Life: In the Blink of an Eye.  Welcome to my dolightful life!  When I'm worn and life feels more doleful than light-filled.  Welcome to my dolightful life!  When my heart is filled with sadness and grief.  Welcome to my dolightful life!  When the day ends with a silly grin from Lovie and a hand outstretched with a bit of cookie dough.  Welcome to my dolightful life!  Life around here is rarely 100% delightful.  Struggles are always at hand.  But in the middle of those doleful struggles, there are lights of joy. 

I recommit to honesty.  I recommit to standing up for complicated truth in a world that says everything must be positive.  I recommit to this life of duo planes.  I recommit to faith in a God that has always been faithful.  Who is even today proving He is faithful.  And who, because of my rearview mirror, I know will be faithful tomorrow.  Peering ahead; gazing back. 

Have a dolightfull day, my dears,

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[1] Kate Bowler interview with Breakfast Television

[2] According to the RAND Corporation - a nonprofit global policy think tank that conducts research and analysis on various issues to support decision-making in the public and private sectors. RAND was founded in 1948 and has its headquarters in Santa Monica, California.

[3] Ezra 3:10-13

[4] Ecclesiastes 3:1-8

[5] Psalm 30:5

[6] Quote attributed to Mariam Keyes

[7] The Next Right Thing Podcast with Emily P. Freeman, Episode 310

[8] My Spotify is currently on replay with three albums: Meditations by Erin Bates, Sanctuary Songs by The Porter’s Gate, and Scripture Meditations by Erin Bates Payne.

[9] Bowler, Kate.  2024. Have a Beautiful Terrible Day.  For When You Don't Feel Fulfilled. Emphasis mine.