“Yet he himself bore our sicknesses, and he carried our pains;”
Isaiah 53:3-4
Look at those faces!
This is one of our engagement photos from Fall 2009. It was a really sweet season to be dreaming about a life together and making plans for a summer wedding. It was scary too. KJ first got sick about six months prior to this and we were still in the early months of finding a diagnosis. I remember the tumultuous experience of being elated about marriage in the near future, while beginning to face the grief of KJ’s likely chronic illness at the same time. I was 23. She was 20. It turns out this ‘marriage’ of goodness and grief, which dwell together richly and reluctantly, has never left us.
Today I’m offering a bit more context from my life that has shaped me profoundly as a pastor and advocate, but it’s also a part of me that typically remains private except with close friends: my journey as a husband and caregiver.
There’s no way I could comprehensively tell this part of my story in a single post. I could talk about the inherent financial instability that comes with managing a spouse’s illness. I could talk about the helplessness and depression I’ve navigated personally as a husband—wanting to move heaven and earth to ease KJ’s suffering but having to learn how to be with her in it instead. It was critical for us to learn that we both carry pain. I can’t always be strong. KJ, despite her physical limitations, has lended me her immense resilience every time I’ve needed it.
There have been hundreds of tearful nights lying in bed together while I rub her swollen hands or massage her lower back during a flare-up. On days like those we’re often too weary to offer many words, but I’ve learned how to offer my presence in ways that communicate, “I want to share your pain,” so she doesn’t feel ignored. In many ways, that’s the crucible for me as a caregiver who would sometimes rather ‘talk solutions’ or hide my own sadness behind logical reasoning. I have a deep well of stamina to serve KJ in practical ways and don’t ever want to understate the value in that. At the same time, the deepest invitations from God often come when I’m willing to set aside the tasks for a bit so I can be more connected to my wife’s heart (and my own).
Twelve years into marriage and KJ’s disease, we don’t have kids although we’d love to. We don’t own a house, although we aspire to in the coming months. We’ve deferred many plans and dreams because we’ve had to accept limitations from day one, some of which have been devastating. These experiences are not totally unique to us, of course, but anyone who’s endured any form of long-term illness knows how isolating it can feel. Even as I write this, KJ is in the middle of a prolonged bout of sickness and strange symptoms we’re still trying to understand (and treat) with a team of doctors. In times like these, we’ve acknowledged to friends that faith seldom soars. It sinks down with the weariness. That acknowledgement has allowed other people to have faith for us, and through that experience we’ve felt held by grace.
Vocational Backdrop
I offer this little window into my marriage and life as a caregiver because it’s been ground zero for my personal formation. Caring for KJ through innumerable valleys of illness has expanded me more than anything else as a pastor. Suffering has forced us to curtail many ambitions and hold our vocations loosely, or more accurately, welcome the journey with sickness as vocation. It’s also taught us to cherish relationships and speak up for dignity—our own and others’.
I can’t separate this part of me from my pastoral journey, writing, and advocacy for people wounded in a faith setting. KJ & I feel strongly that it’s this backdrop of prolonged loss and limitation that helped us to endure our own experience of spiritual abuse—without being totally crippled by it. To be sure, it was still haunting and traumatic, but the strength of our marriage has allowed us to shepherd one another’s healing.
We know what it means to be poor in spirit. A healthy faith community enfolds this and all forms of poverty as indispensable to its relational economy. If you know prolonged pain and disability, you are well-equipped to discern an unsafe environment. Abusive faith systems have little tolerance for sharing weakness so they operate by hierarchies, pretense, and power instead.
Our story has greatly informed my convictions as a pastor and advocate. The pain we’ve lived with has helped us discern the evidences of a system or leader that perpetuates pain. But you don’t have to be a caregiver or live with a disease to do this. You can let your own pain be a litmus of a community’s capacity for love. Do the leaders model attuned concern and availability to suffering? Do they honor the sacredness of your story? Or do intellectual gifts, communication skills, and ambition mask an effective avoidance of tender presence?
Every time I move toward my wife—however feeble my heart feels—I remember to move toward others who are vulnerable, wounded, and disempowered. Every time I speak up for KJ at a doctor’s appointment, I remember the privilege of speaking up for others who lack positional power in the room. Pain and vulnerability enjoin us all to each other.
I don’t wish our journey with chronic illness on anyone. It’s been hellish and holy. I can say for certain, however, that it’s produced greater forbearance and deeper kindness in me. It’s nurtured my inner life. As a pastor and writer, I’m grateful for those gifts that continue to accompany the grief.
Thank you for sharing a glimpse of your heart. You and KJ are a "power couple" in a completely different way. His power is made perfect in your weakness, in your suffering and in your grief. Appreciate you both and the way you open up space for others who are outside the normal power systems.
Your experience, pain, and vulnerability shared, opens the door of healing to anyone who has access to you. Grief experienced in trusted caring community IS THE body of Christ. We are deeply affected by your presence and your pursuit of Love amidst betrayal and loss. Also- what a gift of expressing through writing you both share. Keep sharing it all- I always want more.