Disease, treatment (and faith) revisited: Ten years of “Embraced by God”

This past month I celebrated a few milestones. It has been ten years since I was first diagnosed with a rare blood disease called Langerhan’s Cell Histiocytosis and embarked on a three-year journey of disease, treatment, recovery and remission, and seven years since I finished the manuscript for my book, “Embraced by God: Facing Chemotherapy with Faith.”

In celebration of all that (yes, even the disease, which changed my life positively in so many ways) I am going to publish a series of excerpts from my book over the course of February. If you know someone for whom these words might be of help, please feel free to pass them on. The book is now out of print by my publisher, although some copies might be available out there on the internets. I also have a supply gathering dust in the basement, so let me know if you’d like to purchase a copy for yourself or to pass on to someone you love.

Additionally, I will be giving a retreat based on my book this summer from July 14 – 16 at the Marianist Retreat and Conference Center just outside St. Louis. “Embraced by God” will be a weekend retreat exploring the spirituality of living with cancer and other chronic diseases.

Embracing the Mystery

True faith has nothing to do with jollying people along. It has everything to do with facing the fact that things may be an utter and total mess, may be on the verge of going to hell in a hand-basket, with the conviction that God is at work in the mess.

– Michael Himes

For some mysterious reason, my body has decided to throw a wrench into my otherwise very good life. Even though I’ve been basically healthy for a while now, and my treatments haven’t overly disrupted my everyday life, this disease and its treatment have changed me in many ways – some of which I may never even realize. And even though my doctors and nurses are wonderful, and I’m surrounded by caring friends and family and all their prayers, there is no doubt that this whole thing encircles and encompasses me. It is the great and brooding mystery of my life. So I’ve been thinking a lot lately about mystery.

Shortly after my first chemo treatments began, I remember going to church one Sunday feeling like one of those proverbial horses that have been “rode hard and put up wet.” It was not one of my better days. I ached all over. I was listless. I didn’t want to move or think or do anything. I certainly wasn’t in the mood to put much effort into praying and singing. I really just didn’t want to be there. I would have preferred to have stayed in bed.

But since I was already there, I decided to challenge God, and I prayed something like, “Okay, God, hit me with your best shot. Give me one good reason why I should be here today instead of at home curled up in my nice warm bed with the covers pulled over my head.”

I knew it was a silly thing to do, but that was just the way I felt that day, and somewhere inside me I knew God would understand. I didn’t really think he would respond but, of course, he proceeded to do just that. From the opening song to the scripture readings to the homily to the communion hymn I was cut to the quick with the wisdom and the love and the grace of God that day. Every lyric, every prayer, every nugget of scripture seemed to be spoken and sung for me alone. If not for the power of community around me, I could have been having a conversation with God all by myself.   My God, I thought, you are indeed mysterious and, as we all know, you work in mysterious ways.

So I became intrigued by and drawn to the idea that God, all in all, is a mystery. It’s a good mystery, of course. God’s a huge, divine, holy, sacred mystery and the power of that mystery fills my life. But God’s still a mystery, and I’ve decided to embrace that. My daily prayer has become, “Surprise me today, Lord. Reveal to me some of the mystery and meaning behind all that’s happening to me.”

Since then, I’ve found myself inundated and inebriated with mystery, as well as by a string of confusing and strange emotions like fear, worry and a few moments of anger. I have had long and good talks with friends and family. And here’s what I’ve figured out so far: This mysterious disease with its equally mysterious treatment will run its course, one way or another.

None of us, whether we are carrying around a life-threatening disease or not, know the balance of our lives. We don’t know if we have a day left or decades. So, in the meantime, I’ve decided to embrace the mystery of the whole thing instead of running scared. Z

I’m embracing the wonder of modern medicine and the wisdom of my doctors, along with the frightening notions behind words no one likes to hear or say, like “chemotherapy” and “cancer treatment center.” I’m embracing the power of a healing and life-giving evening of good food, music, conversation and lots of laughter with my very best friends. Especially laughter. I simply refuse to stop laughing, especially at myself.

More than all this and above all else, I’m embracing the mystery of God’s presence in my life, delighting and in awe of the fact that he knows me and has called me by name. As my friend Fr. Gary once said to me, “Never forget that Jesus is crazy about you, Steve.” That was powerful for me to hear, even though I already thought I knew it. It helped me remember that God is not just “out there,” hovering and lingering over us like a zookeeper. God is crazy about us.

My God is a God of mystery, but not because he is removed and distant and uncaring. In the words of author and priest Michael Himes, “God is mystery not because God is so distant but because God is so terribly close.”

My God is the God of all I see and touch and feel. He is the God of all that is coursing through my veins–the good and the bad, the disease and the medicine. God counts not only my days but also the ever-diminishing hairs on my head, my footsteps and my breaths. He is the God of rare blood diseases and cancer centers and chemotherapy. This is my faith, and my faith is in the mystery of God.

Up next: Chemoworld…