We live in a world of scientific explanations, unassailable facts, and cultural assumptions. They respectively state, “Everything has a reason, we know the reasons, and therefore you can live the good life.” If only that were true! It’s not that science isn’t valuable (it is) or that facts don’t exist (they do) or even that some cultural assumptions aren’t helpful (they are), but many of us are unprepared for life, living like disasters weren’t coming. I would know, because I’m talking about myself. Johanna’s illness didn’t just change every aspect of my daily life, it changed every aspect of my thinking. My belief that medical sciences held the key to Johanna’s health died a slow, painful death. So, too, did my belief in my own ability to keep her safe.
When Johanna was first hospitalized nearly five years ago, she faced a barrage of medical tests. She had blood cultures, sputum cultures, CAT scans, X rays, antibody tests, breathing tests, and many more I’ve forgotten. What they found was remarkable because although there were odd results, none of them were indicative of a known illness. Johanna had been running daily fevers, experiencing anaphylactic like symptoms, and feeling miserable throughout each day of her hospital stay. Yet none of these tests explained these mysterious symptoms. The team of doctors were very confused. Each hematologist, rheumatologist, oncologist, and physician faced a plethora of mysterious symptoms, none of which pointed in any certain direction. After a week of unsuccessful attempted diagnoses, an honest doctor ended up discharging Johanna saying, ‘We don’t think we helped you feel any better, but it seems you aren’t getting worse. It’d probably be best to discharge you since we don’t know what’s wrong.’ We readily agreed. Johanna’s illness was mysterious, even to the experts.
Two and a half years ago, when we were living in the upstairs of a friend’s house, Johanna began to be triggered by food smells coming from the kitchen below. These smells triggered Johanna so badly that our friends selflessly turned their porch into a makeshift kitchen. As part of this process, a friend and I tried to put a series of box fans in their porch windows with the hopes of directing food smells further away from the house. With extension cords running the expanse of the porch, we set up five box fans, all pointing outwards. We turned them on and felt the air rushing out of the porch and into the yard. Success felt good. We now had a system to keep Johanna safe. About 15 minutes later I got a call from Johanna. Her throat was getting tighter and she was nauseous. She was entering the beginning stages of anaphylaxis. I quickly asked her when these symptoms began, and she responded with, ‘about 15 minutes ago.’ My heart dropped. Whatever my friend and I had just done was somehow hurting Johanna. We scrambled to shut off the fans. How could this have happened? We were mystified.
Mystery, mystery, mystery.
Mystery runs through our minds like a hand over splintered wood. It hurts. It’s uncomfortable. It’s disorienting. We’d rather stick with what’s known, patterned, and familiar to our minds. And if not that, we’d at least like to know why something mysterious is happening. Yet, Johanna’s illness never afforded us any of these luxuries. We don’t know why Johanna is sick. Though her illness has a name, its causes do not. I’ve done everything I can to keep Johanna safe, but she’s still sick. How do I account for all this? It’s tempting to reach for easy answers. Maybe we did something wrong? Maybe we didn’t have enough faith? Maybe we missed a treatment that would cure her?
At my core, I’m uncomfortable with mystery. I don’t like it. I want my world neatly ordered, understandable, manipulable. I want fixes to my problems and answers to my questions. These desires show me I’ve been believing the phrase, “Everything has a reason, we know the reasons, and therefore you can live the good life.” Recently I was reading in Acts Chapter 12 when I came across some small, incidental verses, which precede the miraculous freeing of Peter from prison by an angel of the Lord. These short verses read,
About that time Herod the king laid violent hands on some who belonged to the church. He killed James the brother of John with the sword, and when he saw that it pleased the Jews, he proceeded to arrest Peter also.
That’s it. The apostle James was imprisoned and swiftly beheaded. No angel, no chains falling off, no iron gates opening on their own. Just a swish of a sword. I was mystified. Why was James killed so ruthlessly and Peter freed? Why didn’t the angel come for James? There was no information to answer my question. It was a mystery.
Ironically, I found myself oddly comforted by these verses. They reminded me of the pervasive reality of suffering. They, too, reminded me that explanations for suffering will often not be available to us in this life. Mystery will always be a part of our world. In spite of this, the message of Acts chapter 12 is embedded in a larger narrative of Christian hope. Hope that lies beyond the grave and is available to everyone, everywhere. A hope that announces, ‘Everything has a reason, God knows the reasons, and He can be trusted.’ This is the statement my heart needs to hear in the hardest moments. This is the statement which allows me to open my hands, accepting from God all that is taking place, despite the mystery. It is the statement that calms my near-sighted heart while Johanna endures her terrible illness. The world, and our culture especially, fills us with a false hope that every question has an answer, an answer which will soon be available to us. The good news of Jesus’ death and resurrection, however, speaks to our heart in the midst of mystery, saying, ‘In this world you will have trouble. But take heart! I have overcome the world.”‘
Oh, Amen, Scott! Peace in the middle of an inexplicable storm. Praying for you and Johanna.
Thank you Mary Ann! We are thankful you would take the time to pray for us amidst our circumstances. We are indeed grateful for God’s peace – a peace we need more of each day.
Thank you for persevering in writing, Scott!
Thank you for sharing what, in His grace and love, the Lord is teaching you in His Word, in the midst of your circumstances … and in spite of them!
Thanks for writing this:
‘Everything has a reason, God knows the reasons, and I can be trusted.’
I needed to remember it, because soon I start the whole process of testing, diagnosing and treating a new physical ailment.
May the Lord continue to guide you!
Love for your beautiful wife, Johanna!
Thanks for your encouragement. I often don’t feel like I have much to share with a wider audience, so your words mean a lot! I hope the God of all comfort meets you deeply as you walk through the complicated process of treatment. One of our motto’s around our house is, ‘God is bigger!’ He’s bigger than diagnoses, medicines, treatments, and even mysteries! May his presence be close as you walk through this time.
I might be breaking the rules to reply twice in one day, but this morning I was short on time, heading to my ex-mother-in-law’s memorial service. I also have MCAD, although not nearly as debilitating as Johanna. But enough to keep me from working and usually in pain. I was diagnosed three years ago, around the same time that I found out that my Rev. Husband was massively unfaithful- if you remember the Ashley Madison Hack.
I discovered over 1,000 emails on the account he used for Ashley Madison for arranging hookups, among other things. I also had multiple ankle surgeries during this time. Music became an indispensable source of hope, comfort, and encouragement to dig deeper into my Abba’s love for me. All this background to say, here is a song worth listening to, allowing it to apply Abba’s balm to a hurting heart. https://youtu.be/aBLu-ASWhY4
Hi Mary Ann. Thank you for sharing so personally. This is awful. I’m so sorry. Johanna and I, too, get great encouragement from music. When I showed the song you linked to her, she’d heard it before. It has excellent truths. We’ve been listening to different hymns recently and one of them called Safe in the Arms of Jesus, by Frances Crosby, has been a favorite. Here’s my favorite chorus – ‘Safe in the arms of Jesus, Safe from corroding care, Safe from the world’s temptations; Sin cannot harm me there. Free from the blight of sorrow, Free from my doubts and fears; Only a few more trials, Only a few more tears!’
I don’t know you, but your post and your story has touched my heart that I feel the Lord has called me to pray for you…Praise God for your faithfulness to Him amidst this difficult trial. Praying for you both, that the Lord would continue to use you for His glory to show others the love of our dear Savior! What a beautiful love you have for your wife, such a picture of Christ and the church. May the Lord bless you both and keep you,
Cecilia, Dallas TX
Thank you for taking the time not only read my blog, but to pray for us. We know God has used the prayers of others to sustain us over these many years! The song you linked to is an excellent one, full of beauty and hard truths. I remember my wife and me listening to it a few years ago, when it was posted to the Desiring God website. We are big fans of Shane and Shane!
I pray that God will completely heal what the drs cannot in Jesus Name. Jesus gives us his hand in times of our biggest struggles. You both have so much to share and your strength in these times is truly amazing. May The Holy Spirit fill your house and both of your lives so much that no sickness will affect your health any longer. You have so much heart and Love that your Story will help show others about Faithfulness to God in good times and in bad. I pray In Jesus Name let the healing begin in The name of our Savior Yeshua sickness be gone and never come back. Thank u Yeshua for everything you are , everything u do , and everything that is to come by your name !!!!
Hi, have you ever heard of the Netflix serious Diagnosis? It’s a real life doctor who seeks to provide her patients with a diagnosis for their extremely rare diseases and conditions. I understand Johanna has a diagnosis but if you haven’t watched that series you really should! There’s an online forum she’s created, literally with the world, to seek medical help for conditions like johannas and it’s helped many people! There may be answers for you there, and possibly someone else with her same condition!
I have heard of that website, and have listened to her most recent book, too (the founder of the Diagnosis series, that is). In fact, one of the case studies in her book was a person with a mast cell disease. Thanks for mentioning it Carly!
I’m not sure my comment posted so here I am trying g again! *tester*