I could feel my heartbeat in my head, like someone had installed a miniature bass drum inside of it. My heart was racing and I felt the blood pulsing through my chest and head. My wife was dying in the room next to me and I was singing worship songs out loud, trying to get my body to obey the rhythm of my voice. The previous sixteen hours had been spent sitting in a chair outside her bedroom, tending to her vomiting and needs. As my beautiful wife kept puking, I kept a vigil. It was her third week of non-stop retching. Our visit to the emergency room weeks earlier had made things worse. We had gone home because things were not getting better. Now, with Johanna at home and unable to take even sips of water without puking, I sat and watched. I read books to her, read Psalms to her, and prayed for her, all while offering her the smallest sips of water to wet her cracked and parched lips. My world was being crushed by the smothering darkness of disease, pain, and impending death.
Many of my nighttime vigils were filled with griefs and pains that literally bent me over. I could barely stand. Often I was flooded with tears, trying to keep them quiet so as not to disturb Johanna as she endured her relentless migraine and puking. Returning to my bed at night, after being relieved by the arrival of Johanna’ sister, seemed surreal. If I slept, I kept waking with fright. My days blurred together in a sea of distress, grief, and adrenaline. My heart would not stop racing. When I sat, stood, laid, or walked, my heart was beating to rhythm of my grief – a pounding, steady rhythm. So at night I kept singing in my bed. I kept singing in my bed as I tried to reign in my shaky body. I needed to follow the rhythms of another kind of world – the world of worship. I needed to step into the well-worn paths of other Christ followers through song, instead of being washed away by the gaping loss which clung so near. My heart needed a new beat to pump with.
Johanna almost died. But she did not die. A final, desperate emergency room visited yielded an unusual medicine, after many failed attempts, that kept her nausea at bay. Large doses of steroids allowed her to receive vital salts and fluids. Two weeks later she was at home, weaning off steroids and starting to feel sick again. We could see her old life and symptoms returning, plus or minus some safe foods and medicines Johanna could eat and take. Despite Johanna’s returning, ‘normal’ symptoms, what we used to call our normal life did not return. We had been profoundly shaken by the past month and our normal felt a long way off. I still felt my pulse throbbing in my head. I woke at random times throughout the night. I felt strangely fragile and weak. A few weeks after our return I journaled,
I’m not even sure how to categorize what has happened to us. It feels like a sort of slow-motion car accident. We’ve come out on the other side, but things don’t feel the same…. My inner narrative is telling me that after the worst happens, things get better… After things are the worst, they can still be bad. It is in moments like this where I feel myself deeply unsettled… I feel my inner strength drained. I feel shattered.
It is in these kind of fragile and shaky moments that I am most thankful for Jesus’ call to follow Him. I’m particularly thankful it’s a call to follow, not a call to strike out on my own journey. In the fragility of my mind and body I more willingly accept the well-traveled ruts of the Christian life. Singing my way to a slower heartrate while Johanna’s body starved and dehydrated, letting the rhythm of another song dictate the pace of my heart, was one of the ways I did this. As I did so, the words of the songs, often forged from their writers’ own distresses and griefs, were reminders of the deepest comforts of God. As I sang different Christian hymns and songs, they not only calmed my heartrate, but also stood as reminders of God’s presence in our distress. Pouring out my heart to God in song in distress was simply imitating a long line of others to Christ, who Himself sang a hymn with his disciples at the Last Supper, before being arrested and crucified. Moments like these are reminders to me that the shakiest and scariest moments of my life are not without a well-trodden path forward. This path is filled with Christ’s presence, who comforts in every circumstance, and who invites us to walk with Him through the darkest valleys. We will arrive with Him on the other side, because He knows the way.
Scott, as I read this post, my heart feels the array of deep emotions of which you express of your so painful journey through this devastating illness. Though Johanna’s symptoms aren’t exactly as my own and seem to be more severe in some ways, I can relate to the near death experience that you’ve gone through. I had a similar episode of not being able to eat anything without severe symptoms for about four months in 2013. Medical interventions kept making things worse, and then when there seemed to be no hope and dying seem imminent, the Lord had mercy and brought about a breakthrough and I began to tolerate some foods. Today I continue to exhibit many reactions to various stimuli, but at a level which allows me to function a bit (hence ability to write you now). This mercy that my husband and I have received, I pray for you and Johanna. I thank the Lord for the breakthrough with the “unusual” medicine you already have received.I especially thank him for your heart to worship in the midst of such calamity. In my Bible study, I am reading in Acts. Recently I read the account of Paul and Silas being beaten and thrown in jail because of their witness of Christ. Upon their praying and singing hymns to God, the Lord brought deliverance through an “unusual” way and opened the doors of the prison. Yet, Paul and Silas still had wounds which needed tending and the jailer was used by the Lord to do this which then resulted in his salvation. My prayer for you and Johanna is for the Lord to bring others into your life to tend to your ongoing wounds, whether these wounds are physical or for the shattered heart. I pray he will protect you and grant you wisdom as I can see you are often offered recommendations for “help” that are questionable in their scientific and/or or spiritual good. I continue to need that healing, protection and wisdom and intend to trust the Lord to do immeasurably more than we even know to ask!
Hi Diana, thank you for this beautiful comment. It is our hope and prayer that others, too, will see God’s goodness in the midst of our suffering. God has led us, and will continue to do so, even when our next steps remain foggier than ever. May He continue to keep you well and full of trust in Him!
I love reading your posts. Let me explain…I am very sorry for all you have gone through, but the way you write is absolutely beautiful. You bring everyone who reads your posts on a journey with you that makes us feel so close to you. We feel your pain. We are brought closer to God with every step you take. You have so many people praying hard for the both of you. Know you are loved.
Thank you for your encouragement, Lynn. I am so glad you enjoyed this post! It is always good to know we have people praying and caring for us – thank you for being a part of that.
Dear Scott,”it is a call to follow”… I hear your heart song in harmony with Jesus who is walking with you both, blending your cries of sorrow with his deepest love. We send our prayers for you and Joanna.
Hey Erin, good to hear from you :). We have indeed felt Jesus’ presence as we’ve walked this long valley. Thanks for praying so faithfully for us!
Wow what a story! What a tortured victory! What a christian testimony! Unsettled yet strangely poetic. I remember you both and I pray for you both! God bless you and keep you and turn his face towards you
Thank you Raven, for your encouragement and prayers. May the Lord bless and keep you, also!
Please give an update when you’re able, esp with the situation going on now in the world. I think of you guys and continue to pray.
We’re doing okay. I’ve got a forthcoming CaringBridge update coming, you can keep a lookout for it at http://www.caringbridge.org/visit/JohannaWatkins. Johanna is safe at home.
Dear Scott and Johanna,
I’m from Germany and I saw a report about you on TV. When I did some research afterwards I was glad to find out that you’re Christians and to read about the way you deal with this situation. It is a great encouragement to witness the power God gives you to enable you to endure everything with a grateful attitude. Nevertheless I’m sure that it is a hard fight for you to have good and true thoughts about the circumstances you face.
God has ordained them for your good and for His glory. I pray that He will make his promise true to be strong in your weakness and make your faith grow through those trials. I think he uses you as an encouragement to other people who suffer. But I also pray that God will release you from your suffering and help doctors find the right medicine.
A book that encouraged me personally dealing with hard circumstances was “The Hidden Smile of God: The Fruit of Affliction in the Lives of John Bunyan, William Cowper, and David Brainerd” by John Piper, maybe you know it. It contains many verses and quotations that help to see the situation from God’s perspective and give courage to accept things as He has planned them according to His wisdom and goodness.
I wish you God’s grace and peace! Take care and be blessed!
A quotation I read yesterday: “Trials are what breaks the alabaster jar, releasing the fragrance of God’s promises in our lives.”