Three years ago, before our home was ready for Johanna, we stripped most of the insides down to the studs. We found all sorts of surprises. In what is now the special kitchen for Johanna, we found the original framing for the icebox, a common built-in feature in 1920s homes. Upstairs we found newspapers from the 1940s, used as insulation between the walls. In the basement we found an old coin collection, with coins from the 1800s (we returned these to the previous owner). Ripping the house down to the studs was time-consuming but ultimately worthwhile. There was no other way to make this home a refuge. Johanna’s unique health needs required singular solutions, many of which meant taking down before building up.
In the coordination of building this safe refuge for Johanna, I found refuge in it, too. I don’t think I recognized it at the time, but I used the demanding requirements of homebuilding and caring for Johanna, along with full-time teaching, as the perfect distractions from my grief. There was simply so much to do that I could easily go without thinking about the grief and anger which Johanna’s illness had stirred in abundance. I could go days without thinking about the infuriating failures of dozens of failed medical trials. I could go weeks without feeling the loss of not being able to be with my wife. This pattern of not processing my grief and anger wasn’t new. It was more like the situations of my life had stripped my insides down to the studs, and I had the chance to see them for the first time. Instead, however, I busied myself with admittedly important tasks, burying myself in work.
What better way was there to smother grief for lost dreams and anger at overwhelming circumstances than with endless work? What better way to delay processing them than with the noble tasks of teaching, home-building, and caregiving? These tasks served as perfect scapegoats when these feelings inevitably crept in. If I was angry, it was because things weren’t going as planned on our renovations. If I was despondent, it was because it was hard to balance teaching, homebuilding, and caregiving. Eventually, however, my circumstances changed, and I no longer had as many tasks to busy myself with. When I had finished putting our house back together, my insides were still stripped apart. I had lost the precious refuge of being too busy.
The day we moved Johanna to our new house is fixed in my memory. All of our hard work was put to the test. Like a giant set of painstakingly-placed dominos toppling after the first push, dozens of events occurred in rapid succession to get Johanna into her safe space. After the final piece fell and I carried Johanna to her space, I collapsed to the floor and leaned my head on the kitchen wall. I prayed and tried to give voice to the furious emotions running through my heart and mind. Would Johanna get better here? Would this mountain of wood and glass and hope work? Her siblings and I watched and cared for her around the clock, and though she was spared an emergency room visit, she remained deeply ill for weeks, her body vigorously reacting to the new environment.
I had poured hundreds of hours of work and hopes and dreams into this house, so when Johanna arrived and was very ill, I was crushed. Like so many times before, I faced another wave of failure and loss, filled this time with the fear this house wouldn’t be the safe space we needed. I had experienced feelings like this before, but this time there was no easy outlet to delay and distract myself from them. Now that the house was complete, I couldn’t drown these feelings in building it anymore. Instead, I had dozens of hours each week to be alone with this anger and loss at Johanna’s continued illness.
I saw for the first time just how angry Johanna’s suffering made me. I saw how deeply immobilized I was by a problem so big, even a one-of-a-kind house couldn’t fully fix it. I saw my grief and loss on full display, no cover-ups, no delay. Some evenings after a difficult night cooking I would retreat upstairs in utter silence, retreating not only from my emotions, but from people as well. Other nights I would distract myself with little projects around the house or play games on my phone, none of which were inherently bad, but were done in a way to delay the processing of my emotions. I was bent on keeping a refuge of busyness intact. Nevertheless, it was clear to everyone around me that something was wrong. In my most honest moments, it was clear to me too, but I spent most of my time being too busy see it. Yet, like water trapped in a leaky pipe, my emotions were coming out whether I wanted them to or not.
If I had been asked what I was taking refuge in during this time, I probably would not have said, ‘busyness’. Though I may have blamed busyness for some of my troubles, I did not see it as a problem. I had been hiding in my refuge of busyness for so long, I no longer recognized it for what it was – a reality cleverly co-opted into a delay tactic. It was only when my refuge began crumbling that I began to see it. It would be easy for me to blame this on an inherent lack of introspection, but it goes much deeper than that. At the heart of my busyness was a belief that I was in control of my circumstances. It provided me an excuse to avoid admitting I was crushed and burdened by our difficult realities. It provided me an excuse to be angry when new problems appeared, or stubbornly refused to be solved. It provided the perfect delay to the process of lament.
If I had ever wondered why the Bible was full of God using weak and unfit people to do his work, I now had my answer. These are the only kind of people who need a refuge. These are the only kind of people living an ‘open-handed’ life. A life lived in the knowledge that every day’s problems are too big and painful to be controlled. Through building a physical refuge for Johanna, God revealed my own refuge. He broke in and pried my clenched fingers from the altar of self-reliance. He pointed me to another refuge, one where I could admit I was crushed and burdened. A refuge where I was asked to shelve my anger and learn to open my hands in humility. A refuge where I could lament and grieve. It’s a refuge I’m still learning to inhabit.
I love you, O Lord, my strength.
The Lord is my rock and my fortress and my deliverer,
my God, my rock, in whom I take refuge,
my shield, and the horn of my salvation, my stronghold.
Amen. That was a very good article…thank you for your vulnerability that allows each of us to look at and admit our own.
Thank you. When I was writing this and thinking through it, I had hoped it would resonate with others. This post was not something I had planned out beforehand, but came together, after reflecting, in a way I hadn’t expected!
Scott, Once again: Thanks for writing !!!
This is beautiful! And so true! In His faithful and tenacious love, the Lord takes us to the desert where we are alone (with ourselves, with our feelings and pain) and where we have no escape. So that, finally, we can run to His eternal arms!
Our Good Father, sustain you, strengthen you and give you every day a deeper perception of his infinite love!
Tal vez no pueda encontrarte en esta vida, así que espero con ansias el día, en la eternidad, cuando pueda abrazar a Johanna ya ti. ¡Ruego por ustedes dos!
P.S. Please, write a book! 🙂
Hi Raquel! Well put. I’m a little rusty on my Spanish, but look forward to that day too! And thanks for your encouragement on writing.
Ups, Scott! I do not speak English … so I translated my comments on Google Translate into parts and apparently copied the message incorrectly in Spanish instead of English! Sorry! 🙂
You are welcome to leave your messages in Spanish, but that will mean I will be the one who needs to use a little Google translate 🙂
Again, wonderful. You may not ever see what you are doing for others who will be in your shoes. You may not see, on this side of Heaven, what you are doing for Johanna, and you will not know what G-d has instore for those who are faithful to Him. By caring for Johanna you are being faithful. None of us will know how this will all shake out. But there is one thing I do know, you and Johanna will be together again in meadows thick with flowers and the sky lit by His glory. Neither of you will remember the pain. Stay strong, be Blessed
Amen and Amen. Johanna’s illness is a constant reminder to us of the bright hope of new bodies in the resurrection! Thank you for reminding us of that, too.
Your writing and existence are powerful. Might I humbly suggest that you create a Facebook page as well, just to update with a picture/link whenever you create a new post? The flood of human connection will be greater there (probably both good and bad, but I have faith that it will be mostly good and fulfilling). Apart from nurturing the soul, practically speaking this would help in transitioning to possibly financially supporting you and Johanna through writing, either through the support of individuals or a larger platform like a book. Don’t worry about writing things perfectly; just speak from the heart
Hi TD, I haven’t given Facebook much thought, but will consider it. As to your last sentence – you are absolutely right. The real time sink is figuring out and thinking about what’s in there ;).
I was just wondering if you knew of the connection of mold as a trigger and driver of MCAS. Mold has devastating health consequences for some people and is little understood or tested for by mainstream medicine. Blessings to you on your journey with your wife.
Hi Susan, I am familiar with molds and their effects on MCAS (though maybe not to your extent?) One of the first things we made sure of in our new home was moisture control, precisely for this reason. HEPA filtration is also important – we have that too.
Scott, thank you for your words. You are a gifted communicator, and what’s more, you use that to point others back to God and His Word. You’re an expositor of the passages you’re reading. I found your site through challies.com and have spent a good amount of time reading, watching the news stories, and learning about you both. I am confident God has already used your trials to help even strangers like me be encouraged in timeless truths. Thank you to both you and your wife (please tell her) for your faithful example of living in His power. I will pray God will continue to use you and your writing. And for your family’s situation.
Hi Katie! Thank you so much for your encouraging words. I actually find writing extremely difficult, and I have to force myself to sit down and do it. I am thankful to God I started doing it, though! Reading comments like yours makes me praise God for his unexpected goodness. God’s calls don’t often sound enticing, but they are always good!
What an encouragement this story was today. Thank you. The last paragraph was so beautifully written and really resonates with my own experience. I too, want to live an ‘open-handed’ life — I seriously doubt I could have said that except for the pains that God has seen fit to allow me to suffer…..Praying for you and your wife today.
Thank you for your encouragement. May God bless you as you walk with Him through your suffering. Thank you your praying for us as we walk through ours.
Dear Johanna and Scott I saw your 60 minute special on youtube tonight. I prayed for you both and I will continue to pray. Please pray for me too? There is a lot of sickness in my family. I have been scared because of it. That is what brought me here. When I saw your special I wanted to know how you were doing. I am so glad you are writing! When I saw your go fund me site and the updates you posted my heart gave a leap. And now I know you believe in God and you bravely speak it out I feel so heartened. I have a little notebook that I try to write in whenever I can the little things I am grateful for even if they are small or silly . And sometimes I even remember to mark down when God answers a prayer. When I go back and read them it helps me through harder days. And when I saw your writing it gave me the same courage. God bless you and all of your loved ones. I love the verse King David wrote about being sure that we will see Gods goodness in the land of the living. Thank God! Hallelujah ♡ Also there is a jewish prayer of thanking God in the morning, it helps even if my feelings are not there to say it. Thank you God for restoring my soul to me, great is Your faithfulness. Sometimes even the feeling follows it if it is spoken. God is faithful and near to the broken in heart. My heart is a little broken wanting you all to be well and together, but glad that we know God is near. I will not forget your family. You are all in my heart.
I’m glad you found your way here. Just like you, both Johanna and I love Psalm 27, too. It’s a Psalm that we often quote to each other and to ourselves, reminding us that the Lord is our light and salvation, and that we have nothing to fear. I understand being scared by sickness. Sickness is scary, but God is transcendent even over illness. He has met us in the midst of it with his precious promises and love. Neither Johanna nor I understand all the ‘whys’ of God’s ways, but we do know who He is, and that brings us the deepest comfort. There is a verse from the gospel of John that I love dearly, it goes, ‘In this world you will have trouble, but take heart, I [Jesus] have overcome the world’. What good news this is! Hallelujah, indeed!
This really resonated with me. So often, I find that I fill an emptiness/pain in my heart/life with business instead of seeking the root cause. Like you, business (or materialism) can never fill that hole. Thanks, for putting this so succinctly.
Thanks for responding Dad! I’m glad what I wrote resonated with you. I had hoped it would be as useful to others as it was for myself. Love you bunches from Minnesota!
I pray these words by Julie Howard will be meaningful to you. I think there’s actually a tune that goes with them but I’ve never found it online.
In The Quiet Curve Of Evening
In the quiet curve of evening,
in the sinking of the days,
in the silky void of darkness, you are there.
In the lapses of my breathing,
in the space between my ways,
in the crater carved by sadness, you are there.
You are there, you are there, you are there.
In the rests between the phrases,
in the cracks between the stars,
in the gaps between the meaning, you are there.
In the melting down of endings,
in the cooling of the sun,
in the solstice of the winter, you are there.
You are there, you are there, you are there.
In the mystery of my hungers,
in the silence of my rooms,
in the cloud of my unknowing, you are there.
In the empty cave of grieving,
in the desert of my dreams,
in the tunnel of my sorrow, you are there.
You are there, you are there, you are there.
God is with you and Johanna – may you sense His Presence.
Thanks for sharing this Grace. I wonder if the writer of this had Psalm 139 in mind?