Almost fifteen years ago, a flippant comment from a young sonographer turned the page of my life, catapulting me into what I now know as normal living. “Wow, your kidneys!” she said. “How long have you had that disease?”

“Huh?” I was puzzled. As far as I knew, she had been looking at other organs for something entirely unrelated to my kidneys. My obvious confusion shut down that conversation fast. She made a remark that I “really should follow up with my doctor,” and I left that dark room spiraling a bit more into the shadowland of what I would come to know as chronic disease.

The Desert of Answers

For anyone who has been diagnosed with a chronic illness, you know well the labyrinth of this story. Doctor appointment followed by specialist appointment. Labs of every kind. Googling holistic treatments, expensive sit-downs with naturopaths, MRIs and CT scans with contrast dye that temporarily lights your whole circulatory system on fire. Pain clinics, medications, supplements—all in the effort to bring any kind of treatment, answers, or relief. With all of the different teams I’ve seen over the years, I’ve become an expert in my own body. I’ve sat with some of the most dismissive and, in contrast, caring professionals, each offering a different perspective on this disease.

But at the end of every appointment, every blood draw, pain clinic review, image, and consultation, I still went home with the ticking time bombs of my kidneys and liver. Despite the flood of information, I was somehow still living in a desert of answers.

The Ocean of Fear

It was a hazy morning in early June when my husband and I finally boarded our final connecting flight for Rochester, Minnesota. After more than a year of heightened pain and unanswered questions, we were ready to meet with whoever would listen to us at the famed Mayo Clinic. I was exhausted, discouraged in heart and weary in body. This appointment was on the swinging tail end of years of unanswered questions with zero treatment options.

To live with a chronic illness usually means we are living in the space of under-researched, under-funded, and under-treated. We suffer in invisibility, sometimes even having to remind ourselves that the sickness we bear isn’t imagined. A couple of summers ago, what festered inside stopped our daily life in its tracks. No longer able to go about my days ignoring the disease within, it was time to seek more help. If we could get to Mayo, we heard there was a team of doctors doing treatments that no one else was offering. Like the Wizard of Oz, if you could make it to them, they could help.

Our friends and community had fundraised through GoFundMe to help cover the costs. The response was both generous and humbling. We were outside the bubble of insurance. Outside the bubble of our means. Chronic illness does this—it moves you outside of what seems to be the joy of living for everyone else. Everyone else gets to go on vacation. Everyone else gets to sleep at night. Everyone else plans to live a long life. You are going to another hospital. You haven’t slept in weeks, months, years. You hope your spouse and children don’t have to take care of your broken body for too long.

It doesn’t take long for my anxious imagination to swell into my children’s future, picturing a life where I am sick, bedridden, a burden, or absent all together. I can fear their stories of “I had to spend my youth caring for my sick mother.” I imagine my exhausted husband, bearing the burden of finances and a career while I waffle in between an ability to work a long day and sleep all day.

I feared I could see it in my family’s faces when I could not make a meal. When I was too tired to get out of bed. When I was in so much pain, I couldn't stand upright. When the medication for the pain sedated me into yet another nap. When I ghosted friends or church members and wondered how much a friendship could endure.

There on that plane bound for the Mayo Clinic, the fear bubbled up in my throat, and I was convinced that this would be my future. I could see it play out before me. In one way or another, I would fail them. I would not have the future I hoped to have. What hope was there in any of this? Has the Lord completely forgotten me?

The Fortress of Sovereignty

In that final stretch of our travel, I had the silence of the sky to face my fears. I wrestled again with what I believed. Did I actually believe that God intended to see me through even this? There is that well-known phrase, “I have learned to kiss the wave that throws me against the Rock of Ages,” but I felt as though I was drowning. I have been thrown against the Rock of Ages; at what point does He catch me?

What happened in the following week was a mercy—the doctors at Mayo were present and compassionate. They knew exactly what I was talking about before I began to explain. One specialist listed what she assumed to be my physical symptoms in detail before I even began my usual, rehearsed explanation. As it turns out, I didn’t need to explain; they knew. They were even able to perform a surgery that brought some relief. It wasn’t a cure, but suddenly I could literally breathe easy again.

And then I agreed to genetic testing in order to answer one question—where did this come from? It’s usually passed from one family member to another, but no one in my family had it. Instead, genetic testing revealed that on line 4,257, where there should have been an “A,” there was a “G.” There it was. The reason my kidneys and liver were slowly outgrowing the capacity of my abdomen, declining in function, and filled with innumerable cysts that bleed and rupture was this little line deep in the code of my DNA.“Your DNA mutated when you were developing in your mother’s uterus,” she read the results to me weeks later. “There’s a less than 1% chance that anyone else in your family has this.”

It was a fortress of relief—the Lord knew. The Lord knows. The Rock of Ages not only caught me, but He has held me this entire time. None of this is outside of His sovereignty. When He knit me together in my mother’s womb, He knit this story into my life, fully intending to use it for His good purposes. There is no need to panic. There is, in fact, nothing to really fear. If the Lord holds me, what can disease do to me? If the Lord directs my path, what can fear have to say?

Keeping the Longview

Chronic disease asks its sufferers to keep the long view. Like a lifelong companion who we never chose, we must learn to live with it and find a life that is more than just doctors appointments, lab results, and ED visits. But as I’ve learned, chronic disease is not the only companion we have at our side. The Lord is with us. He has not left us alone to put on a brave face and tough it out. Ephesians 1:11 promises us this: “In him we have obtained an inheritance, having been predestined according to the purpose of him who works all things according to the counsel of his will” (ESV, emphasis added).

All things. Including my DNA. Including my organs. Including lab results, scalpels, contrast dye, and the searing edges of pain on sleepless nights. Nothing is outside of the counsel of His will. Fear wants my imagination to wander outside of the counsel of His will, but here is the truth of what will actually happen to me: He will be sovereign no matter what.

He has not afflicted me with the purpose of harming me. Lamentations reminds me that “the Lord will not reject us forever. Even if he causes suffering, he will show compassion according to the abundance of his faithful love” (Lamentations 3:32).

For those of you who also suffer, I am certain of one thing: We are not forgotten; we are held. As the road of the unknown winds ahead, fear will certainly tempt our imagination. It will weave futures without the promise of hope or grace. It will try to drown you with lies. Yet there is no path where He has not already gone before us into the shadowlands.

The Rock of Ages will catch you.

Notes:

1. This quote has been attributed to Charles H. Spurgeon but also has no attributable source. The Spurgeon Library references a sermon, which may have been the original concept in their blog, “6 Quotes Spurgeon Didn’t Say,” The Spurgeon Library, August 8, 2017, https://www.spurgeon.org/resource-library/blog-entries/6-quotes-spurgeon-didnt-say/.

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Author Bio

Andrea G. Burke is the author of A Bit of Earth (Lexham Press) and The Quiet Resistance (Baker Books) and is on staff at Grace Road Church in Rochester, New York. She is married to Jedediah, and they are raising their two kids, two dogs, two cats, a few strays, a lot of ducks, and chickens in an old farmhouse near Rochester. You can find more about her on her website (AndreaGBurke.com) or on Substack, where she writes somewhat regularly (andreaburke.substack.com).

Additional Resources:

A Joy That Endures Bible Study		When Storms Rage		Even If | A Bible Study of Habakkuk
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