I have recently read a book that has surprised me by its depth and honesty. Victor Lee Austin’s, Losing Susan: Brain Disease, The Priest’s Wife, and the God Who Gives and Takes Away, tells of the author’s caring for his terminally ill wife as her brain and quality of life gradually deteriorated. His story is full of pain, exhaustion, and doubt, but also of joy in the midst of the sickness and loss. In the coming week I will offer three excerpts from his book, the first of which today, I pray, challenges your assumptions of what joy truly can be.
If you, reader, have ever had to help your dearly beloved to the toilet or had to wash soiled sheets, you know what I mean…Every human being needs to know that when such a thing happens, we are not alone.
On September 29, 1978, I vowed to love Susan as my wife in sickness and in health for as long as we were both alive. The events that I am recounting are nothing but parts of that reality, a very human reality. Our bodies, which can give us such pleasure, are also the loci of basic material needs. And sometimes, perhaps more often than we think, we need other’ help with those basic needs.
But I want to say something more. It is not only that I had to do those things for Susan, things that I did not foresee and for which I was usually quite unprepared. It is, also, not only that in doing these things I found God to be with me and, in the tensest moments, to be present and helping me through. It is this: I found joy in doing these things. Wiping Susan’s bottom, when I had to; washing sheets; guiding her through the obstacles of an airport; taking her to the hospital; sitting by her bedside; shuttling from home to hospital to work and back again; being her advocate in the midst of a frustratingly complex medical system and being the only person who knew her history and the many pieces of her complex medical case – doing all these things for Susan and upon and beside and for the sake of her body gave me a joy I did not expect. I would weep. I would be angry. I would pace the floor. But there was joy in my bones. I learned things about myself that I would have never learned. I learned that I could clean Susan’s body and feel joy.
And this is not just the joy that’s about me, joy that I…could do such a thing. And this is not just the joy that’s about her, joy that she…felt relief from the touch of the washcloth. It is a joy that wraps around both of us and lifts us up, in the midst of such a mundane human thing as caring for one another’s corporeality – lifts us up to the heights, to the heart of joy.
Jesus, we are told, wept the night before he dies and sought another way. His body must have jerked uncontrollably when the nails pierced into nerves. But as he looked out upon his fellow humans, might there not have been at that very same time, and without subtracting from the reality of the pain, might there not have been an elevation, a lifting up, a sense of joy?
‘The love of my eyes has turned ugly,” one might say. She lies unconscious. Her clothing smells. When I ask if she knows me, she just stares. But she is still lovely. I can stroke her forehead. I can kiss her lips.
I discover that joy is at hand, accessible, even in this.