Light in the darkness of doubt
A womanās trust in Godās plan for her is challenged by a difficult-to-diagnose disease.Ā
Darla NagelĀ
I had no hope, no idea what to do now.Ā Why are you letting this happen to me, God?Ā Ā
I sat on my bedĀ in myĀ college-townĀ apartmentĀ and let the tears loose. Holding them in seemed like a poor way to spend the energy I had left.Ā Ā
Iād just received aĀ briefĀ phone call from my dad. HeĀ passed along the results of a sleep study Iād had atĀ the University of Michigan hospital.Ā The sleep technicians hadĀ initiallyĀ had a difficult time assessing my breathing with their equipment.Ā My hopesĀ soared; maybeĀ sleep apnea was the cause of a host of debilitating symptoms Iād developed two years earlier, at age 19.Ā IĀ have been experiencingĀ crushing and gradually worsening physical and cognitive exhaustion.Ā It threatenedĀ myĀ pursuit ofĀ aĀ degree inĀ EnglishĀ and of aĀ career in publishing, possibly even Christian publishing.Ā Ā
The news was not good:Ā the sleep study results had been negative.Ā They could not find the cause.Ā
TheĀ darknessĀ
I canāt take this. How is this going to be good for me?Ā I was thinking of a usually comforting Bible verse framed in my bedroomĀ at home: āFor I know the plans I have for you .āÆ.āÆ. plans to give you hope and a futureā (Jeremiah 29:11). I felt my frustrationĀ with the lack of a diagnosis. It beganĀ transforming into anger at God. I knew Iād regret that anger later, so I tried a different tack.Ā Ā
I grabbed the box of tissues out of the bathroom, blew my nose, and grabbed my journal to vent by writing all the questions I wanted answered. My head felt pressurized from trying to control my crying and streaming snot. I asked whether God really was perfect, really cared about me, and really would help me through this. I knewĀ I surelyĀ didnāt deserve his help,Ā after all IĀ was doubting and criticizing him.Ā Ā Ā
For the next two days, anger at God darkened my thoughts. It didnāt seem loving for him to allow me to hope about the sleep study andĀ thenĀ not to give me any idea about where I should go to find a diagnosis. I feared that Iād never know what was wrong and end up bedridden.Ā Ā
WhileĀ walking through Godās beautiful autumn creation and gazing at it from the fourth floor of theĀ collegeĀ library reassured me of his perfection and power, I wasnāt sure about his love.Ā The love of Jesus in redeeming me was forgotten.Ā If he didnāt love me, I was heading for disaster in this life and in eternity. IfĀ a perfectly wise and powerful God wouldnāt make a good plan for me, how could I make one with my limited intelligence and strength? That would be harder than assembling a puzzle while its picture was still being painted.Ā Ā
I didnāt share what I was wondering about with anyone because this situation seemed between just God and me. But as hours passed, I sank into despair at the thought of handling life with a chronic illness.Ā Ā
TheĀ lightĀ Ā
I sat on my bedĀ thatĀ Saturday evening, gazing at the greasy-haired, frowning girl in the mirrored sliding doors of the closet because I couldnāt do anything productive. Then it hit meāor God hit me with it.Ā Jesus lovesĀ this girl in the mirror. If I couldnāt trustĀ him, I couldnāt trust anyone or anything.Ā Ā
SoĀ I needed to trust him. Iād have nothing at all if I didnāt have him. My burden was too much for my family and me to bear alone. It was clear that Iād fallen into an inaccurate, negative thought pattern. Just because I thought that Iād never have a diagnosis and that no treatment option would succeed didnāt make either true.Ā Ā
After a few more days and many prayers, I decided not to give upĀ and decidedĀ to get a referral to Cleveland or Mayo Clinic. I scheduled an appointment with my primary care physician to get that referral.Ā Ā
The day of the appointment, my 22nd birthday, my prayers and my familyās prayers for a diagnosis were answered. My doctor diagnosed me with the illness that deep down Iād suspected I had.Ā Having a nameĀ sparked a surprisingly bright lightĀ of relief, given the conditionās unpredictable prognosis.Ā I haveĀ aĀ multisystemĀ disease that has no cure,Ā no Food and Drug Administrationāapproved treatment, and about a dozenĀ recognizedĀ specialists for more than a million patientsĀ nationwide:Ā myalgicĀ encephalomyelitisĀ (pronounced my-ALL-jickĀ en-SEEPH-uh-lo-MY-eh-light-is.). Itās alsoĀ calledĀ byĀ the wimpy nameĀ āchronic fatigue syndrome.āĀ Ā
LightĀ sharedĀ
I continued my college studies, trying treatment after treatment that failedĀ or even intensified some of my symptoms. As my physical health worsened, my momās spiritual health also worsened.Ā
One dayĀ two weeks before my graduation,Ā she saw meĀ suddenly sit down in exhaustion. She sat down next to meĀ andĀ said,Ā āIāve prayed and prayed about you, but God doesnāt do anything.Ā A perfect God wouldnāt do this to you.āĀ She seemed to forget about Jesus too.Ā
Mom had brought me up in the Lutheran faithĀ and for two years had been my Sunday school teacher.Ā To hear her doubt Godās perfection was worrisome and shocking enough to keep my brain from generating a responseāuntil I remembered doubting God after hearing the sleep study results. Then I knew what I could say that might help her.Ā
āThere was a time when I doubted that God loved me,ā I began. āI finally realized that if I canāt trustĀ him, I canāt trust anything or anyone. Iād have nothing at all if I didnāt have God. Life would be completely pointless and hopeless.āĀ Ā
Mom sighed. āI suppose.āĀ
At a time when my disease often scrambled my words or made my mind go blank when I needed to make a decision or a response promptly, the words my mom needed flowed. The wordsĀ andĀ the delivery maybe werenāt perfect, but both were guided from above.Ā Ā
I didnāt knowĀ that many dark daysĀ were yet to comeādays whenĀ I couldnāt stand up unassisted to greet my parents when they came home from work.Ā We waited and prayed forĀ a brighter future.Ā
Six years haveĀ nowĀ passed sinceĀ I shared my epiphany with my mom. I have the blessings ofĀ a job that uses my English degree,Ā a ChristianĀ myalgicĀ encephalomyelitis specialist within driving distance,Ā and an inexpensive off-label drug that completely lifts the fog of my cognitive exhaustion andĀ somewhatĀ lightens the physical exhaustion.Ā Ā
Shadows remain: The job could be lost, the specialist could retire, and the drug could stop working.Ā ThereāsĀ nothing like illness to remind us of the imperfections of our bodiesĀ andĀ nothing like doubt to remind us of the imperfections of our understanding of God.Ā I still face the darkness of an uncertain future with my chronic illness, but I trust thatĀ my LordĀ not only holds but also is the light my family and I need.Ā
Darla Nagel is a member at Emanuel, Flint, Michigan.
This articleĀ is adapted from Nagelās memoir,Ā Lightening the Shadow: Diagnosing and Living with an Invisible Chronic Illness.
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Author: Darla Nagel
Volume 105, Number 12
Issue: December 2018
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