I recently watched one of my nephews engage in a graceful display of delay tactics. I had come over to see his newborn sister and came just a bit before his bedtime. We played together, filling our time with the usual lifting, throwing, and chasing games – most two-year olds have the excellent quality of being pleased by being hurled through the air. When it was his bedtime, he agreeably began his routines, emerging happily at the very end ready to give out bedtime hugs and kisses. This night he had the opportunity to give hugs and kisses to his mom, grandma, and me, all willing recipients of course. After giving each of us a hug and seeing our pleased reactions he headed back to dad, who was waiting to take him to his bedroom. Before leaving, however, he gave us a big smile and came back for affection round two. All of us were very amused by this and my nephew most of all, because it afforded him 30 more seconds of freedom from the tyranny of bedtime.
Though I have very much outgrown my desire to delay bedtime, I too engage in delay tactics. This has come to my attention more than usual over the past few weeks. I’ve been reflecting and writing on my own journey of the past few years, and it has been a painful process. It’s what’s kept my blog so silent these past few weeks. I’ve written, rewritten, and deleted hundreds of sentences. As I’ve done so, I have become more aware than ever of how I kept myself busy during the most stressful times, in part so I wouldn’t have to be alone with my thoughts. This may sound like a strange thing to say, especially because my past few years have been full of useful busyness. I have cooked Johanna’s meals, worked as a teacher, researched medicines, and among many other essential tasks, helped build a safe space in our house for Johanna. I did each of these tasks with peculiar intensity, throwing myself wholly on them. I wanted to keep Johanna safe.
What I have wanted from the very beginning, was for my beautiful wife, Johanna, to be better. I wanted her MCAS to go away and to have my life back. Her disease has been an anti-creational force. A force that has continuously threatened to undo the beautiful life Johanna and I had imagined. Instead of being able to build our lives together, it pulls our lives apart. Gone are the days of shared meals with friends and family and even shared meals with each other. Gone are the days when I could rest my head on her shoulder, and hers on mine. Gone are the unacknowledged freedoms of being able to plan trips, look forward to celebrations, or get away from it all. No, there’s been no week-long respite where we could let it all go and rest. No, there’s been no saving for trips, so we could enjoy one another together. No, there’s been no escaping this force. There are no breaks on this side of disease.
I never wanted to have to learn about positive pressure systems, the pharmaceutical industry, and the best way to get immediate attention in the emergency room. I learned them anyway. I learned them because Johanna was still sick, and because I like to tackle problems head-on with intensity. Even my best efforts were not able to overcome the tornado of her disease, however. So I followed after its path, attempting to right what had been upheaved along the way. I had plenty to keep me busy. There has always been something to do in the wake of her terrible illness.
As I picked up the pieces along this destruction ridden path, there was another storm brewing in my heart. One of anger, disappointment, and loss. It was a storm that I kept largely suppressed, drowned in the immediate needs of each day. Occasionally a few of its gales and gusts would lash out around me, but my hectic circumstances always smothered it up again. This storm, however, was silently growing stronger as I continued to relentlessly try and fix the day’s problems. Problems that kept coming and coming. In fact, Johanna’s illness was so severe and her health so precarious that our daily ‘normal’ changed continuously. There were failed infusion days, days when Johanna’s medicine stopped working, failed experimental chemotherapies, and on and on and on. All along, often without knowing it, I delayed processing the full weight of grief, anger, and loss I was constantly experiencing.
My delay tactics were not working out. I couldn’t escape the reminders of loss all around me, each of which felt like failure. No matter how much time I spent researching, helping, planning, caring, and providing for Johanna, she was still sick. I had never been through anything like this before. My passionate temperament had always equipped me to play the role of knight in shining armor, sallying out to defeat the dragons in front of me. Johanna’s disease, however, was more like the mythical hydra, springing two problems where one had been solved. This paradigm, of facing a problem which no amount of work seemed to fix, was one I was not prepared to face. While I was doing all the hard work to care for Johanna, I was neglecting the hard work of facing the grief and loss that had covered my life.
At the time I had no idea what God was preparing for me. Looking back, it would be easy to characterize it as learning to trust Him more fully, but it was more than that. God was preparing me to learn something new. First, however, this inner storm of unattended grief and loss had to burst open. It is to this topic I will return to write about in the coming weeks. I have more reflecting to do, but I plan to continue to write on all that God has done. Writing this blog post has been my hardest one yet, I feel almost embarrassed to have taken nearly four weeks to write it! Now it is nearly Christmas!
In my first few attempts to write this post I tried to simplify the journey I’ve been on. Every time I did this, it came out hollow and inauthentic. This is analogous, in a very small way, to the Christmas story itself. The Christmas story has been presented to us so many times that it can sound overly simplistic. The nativity story, however, is a story full of danger and surprise. The short accounts in the gospels of Jesus’ birth leave a lot untold, but enough to tell us, upon closer inspection, that hardships abounded. This year, as I celebrate the birth of Jesus, I’m thinking about the very desperate circumstances which surrounded his birth. I’m thinking of Jesus’ family, as they scrambled to find a safe space for Jesus. I’m thinking of them as they fled from Herod’s murderous plots. I’m thinking of them as they waited with wonder and awe at this young baby and his future life. I’m remembering that every messy story finds a friend within the pages of scripture, complications and all.
Have a very merry Christmas!
Merry Christmas, Scott!
Thank you for persevering in writing, in the midst of everything, for being vulnerable and for sharing what the Lord is doing in your life through pain and suffering …
I pray to God, who is the God of all consolation, to comfort and strengthen you! (2 Corinthians 1: 3-7)
Love for Johanna and for you!!!
Thank you Raquel, and a Merry Christmas and Happy New Year to you! I wish it didn’t feel so much like persevering, but writing does feel that way at times. Thanks for your prayers, Johanna and I depend on them each day!
Thank you for your latest blog. I hope you and Johanna had a memorable Christmas together, “merry” does not fit. Yes, Jesus birth and first few years were horrible starting with obvious family and cultural issues with her pregnancy, poor, late term trip to Jerusalem… on a donkey, no room at the inn, unclean stall, startled by shepards with a wild story, wise men with gifts, then told to pack up and leave for Egypt… now, stories of the massacre behind them, and can you imagine the fear and lack of family and friends in a new place? Yet, somehow a story came out of that mess that brought, and brings comfort even today. Their sacrifice and trauma has brought hope, faith and love to this world for over 2000 years. GDD
Hi Gary, what a succinct summary of the trials and terrors of the first few years of Jesus’ life. Our God is a God who brings good out of trouble, and the story of Jesus is our shining example! Have a wonderful New Year, Gary!
Scott, I am so very sorry. And I like you, I do not know what else to say other than I am so very sorry.
Hi Sue, thank you for your kind words! Sometimes saying ‘I’m sorry’ is the best that can be done. Johanna and I like to add, “but God is bigger!’ to remind us there is purpose in the most disorienting storms. Have a wonderful New Year!
Scott, it’s been a few years since I reached out to you (via D. Olson) about writing a book. These posts show what an excellent writer you are. If you’d like to chat about publishing, I’d love the opportunity. You and Johanna have a lot to share, especially about your faith and hope in God that so many news stories leave out. That said, there’d be no expectations on my part–I know you’ve got a lot going on–but I could let you know about the possibilities. Thanks for considering. –Jeff
Beautifully written, Scott. You have a gift. I’ve been praying for both you and Johanna. I have no lofty solutions. Only prayer. But that’s the very best.
Thank you Grace! Prayer is powerful, and in situations like ours it does feel like one of the only things we can do.