Doubt is a common sensation. It takes many forms and can be a useful tool for self-protection and in the search for truth. There was a long season in college where I began to seriously doubt my own Christian faith and the Bible. My doubts led me to explore, learn, read, and think about the Bible and the historical tradition of the church in ways I had never done before. I am extremely thankful to God for this season of serious doubting because I came away from it changed. I didn’t get a lot of my questions answered, but I felt I had learned to ask the right questions. In later posts I may return to some of the things I learned during this season, but in this post I want to specifically address the self-doubt I’ve experienced as a caregiver for my wife, Johanna.
The doubt I’ve felt as a caregiver feels markedly different than the kind of doubt I experienced in my faith during college. When I had serious doubts about my faith, I turned to the abundant resources of Christian thinkers, science textbooks, philosophical writings, and to my own Christian friends. When I have doubts about myself as a caregiver for Johanna it’s harder to know where to turn. I often worry I’ve made a mistake in helping her, keeping her safe, or even in suggesting what medicine we ought to try next (we often have choices because MCAS is so poorly understood). Sometimes I just feel weak, like a balloon with small holes everywhere, always unsure I’ll have the strength to keep pressing on as I do the many daily tasks required to keep Johanna alive and safe. Some of this is because our situation is so unique and Johanna’s illness so poorly understood. There’s no plotted treatment plan for people with Mast Cell Activation Syndrome. Sure, there are lots of medicines to try, but there is no sure treatment for anyone with the disease. This is a bewildering feeling. It’s even worse in Johanna’s case, however, because not only have we tried dozens of treatments, but Johanna has developed allergies to medicines which have helped her in the past. Johanna’s illness and our difficult situation make it easy to think I’ve made a wrong turn, and hard to know the difference between a wrong and right turn itself. I’m easily filled with self-doubt.
As I reflect on where these self-doubts as a caregiver come from, I again think about our modern understanding of illness and disease. Up until Johanna’s diagnosis of MCAS, I didn’t know how little was known about our bodies. I thought there was always a way forward, even if that just meant pain relief. Johanna’s illness shattered this understanding. Johanna’s illness is mysterious. Every step forward feels like a magnified sensation of missing a step (or thinking there’s an extra step) on a staircase at night – that jolting, jarring impact and low-grade anxiety s that something is coming. Another source for my self-doubt is my experience as a caregiver juxtaposed against my inflated sense of self efficacy. I have never encountered an obstacle so large and confusing as Johanna’s MCAS. I have never faced a problem so persistently perplexing. Though my efforts have helped Johanna, they have never accomplished the degree of help and healing I’ve wanted for her.
I’m not self-doubt free these days, but I fight my doubts with humility and trust. The first weapon, humility, acknowledges that the task ahead of me is too much for me. I can’t handle it. It’s overwhelming. It is crushing. The word humility has its linguistic roots in the Latin word humilis, meaning ‘on the ground’. That’s very similar to what it feels like to face the needs and realities of Johanna’s illness. Whoever said ‘God never gives you more than you can handle’ is lying. A practical action God has patiently helped me learn is the act of opening my hands, palms up, symbolizing the releasing of control over what is happening. I’ve done this when a meal I’ve made for Johanna goes wrong and she doesn’t have enough food to eat. I’ve done it when I’ve spent hours watching Johanna suffer without relief in the hospital and at home. Nothing I can do will fix these errors. I can’t go back in time, or magically heal the intricately broken nature of my wife’s body. My anger won’t fix it either. So I lift my hands, and say, ‘This is too much for me’.
The second weapon, trust, feels like the other side of the coin. One side says, ‘This is too much for me.’ The other side says, ‘God is bigger than this. Your life and suffering have meaning’. It’s often not clear what that meaning is, and I’ve found our suffering painful to dwell on, but I trust that God will one day fully reveal his purposes. In the meantime, he has shown himself to truly be bigger than our suffering and has sustained us. At its deepest level for me, I equate trust in God in our present situation with His transcendence. God really is transcendent over Johanna’s life, and mine. It’s hard in the most painful moments to see how this can be true. I struggle to believe it. I open my hands saying, ‘I believe there is more going on here than I can see. I believe you have purposes I cannot see. I believe that Jesus’ call to follow him is valid, even in this dark valley.’
At the start of this post, I mentioned that when I have doubts about myself as a care-giver, it’s hard to know where to turn. Although that’s still true, I’ve found the most helpful place to go is the same source that eventually became my anchor as I wrestled with doubts about my faith in college: the Bible. I’ll explain more of my thoughts on this next week when I discuss the monotony of caregiving. Caregiving requires the same actions every day, many not exciting (some even unpleasant). Join me next week as I write about the ways I view and deal with monotony.
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