When We Stumble

“The darkness will try to overtake you, but just turn on the light, focus on the light, hold on to the light.”

Jon Batiste, from an interview on CBS Sunday Morning, April 10, 2022

“One thing I’ve learned from this time is it can all go away. Things can change…your world can be turned upside down.” So began the interview with Jon Batiste, the band leader on the late night Stephen Colbert show and well known to those who watch late night television, which I do not. I only know him because I had discovered his wife, Suleika Jaouad, in early 2021 when I read her bestselling book, “Between Two Kingdoms,” which came out just as I was heading into recovery from my first bout with non-Hodgkin lymphoma. It was a grueling and honest account of her journey, at age 22, through the hell that is leukemia and the mystery that is life during and after recovery. I have followed her on Facebook ever since. That is how I found out in January that the leukemia had come back, 8 years later, and in a much more aggressive form. Hell was back.

Jon and Suleika had been together during those intervening years, but it was in facing the terrible reality of another bone marrow transplant that they decided to marry. It was time to make the commitment; they had already been making plans for how to live through this nightmare together and how they would live beyond it.

It was in that light that Batiste, an eclectic and fascinating musician, pianist and composer who just won 5 Grammy’s, made these remarks. When I heard them, I was caught, and I knew that I was hearing just what I needed to hear in light of some of the changes in my own circumstances. He is a gentle and wise soul, and his vivid description of Light caught my imagination. And his words took up residence in my heart.

If you have read any of my last three posts, you know that I had come to an amazing place in my cancer journey this time: a place of acceptance and surrender that freed me to still passionately love life and to feel a sense of oneness with creation and all with whom I share it. I was so surprised, and I had settled back to carry that forth confidently for the second half of my treatment.

Then my recent back pain grew much worse. Then I began having chills most of the day, no matter what my temperature was. Then I wound up a second time in the emergency room for seven hours with a high fever, which turned out not to be an infection, but “just” the lymphoma playing tricks on me. Then I wound up having lively night sweats every night instead of just occasionally. Then fatigue and weariness hit me like a hammer. My sunny outlook was taking a bit of a hard hit and I wasn’t finding my way through it. Each one in its own way was manageable on its own, but they were ganging up on me, darn it, and I was getting tired.

I slept a lot. I was occasionally getting a bit snarky when I had enough energy.

Then I learned that there is such a thing as a “steroid crash.” For the day when I get a steroid as part of my monoclonal antibodies infusion and for the day after, I have that delicious energy spike that I’ve talked about. But then, on day three, there comes the “crash,” both physically and emotionally. Halfway through my treatment protocol, I was headed into a depression that was challenging everything empowering that I’d found.

When I heard Jon Batiste, in his oh, so gentle way, talking about how he and Suleika were handling this horrendously difficult time in their lives, his words resounded loud and clear. I knew that this was what I needed to hear.

“Look for the light,” he said. “The darkness will try to overcome you, but you just need to look for the light.” And I knew what he meant. The places of hope and beauty and power that cannot be overcome by the darkness. Often, the places we find in creativity.

His music is his light. He could not physically be with Suleika after her transplant. So every night when they talked, he created a new lullaby to ease the power of her suffering. It was her light. And Suleika has discovered a remarkable artist in herself which can express the deepest emotions that she is struggling with, with amazing power and brightness.

We each find our own light. The light that helps to carry the burden. That helps us keep the balance between it and the darkness.

Music is my first light. It is the place where I find the Spirit alive and healing and understanding the pain of life and its glory, too. And it is returning to me the beauty and calm of life again even in the midst of the back pains (thank goodness for p.t.!), night sweats, temps and fatigue.

I have plans, too. They are part of the light and the hope as I wait my way through the second half of my treatment. They begin with an eventual trip to the Mississippi River, where my dream of spring and new life and rushing waters and sunshine and history and granite bluffs and beautiful old river cities comes to dynamic life before all my senses.

I plan to keep writing and to spend time with family this summer and go to church in person after 2 years away.

Meanwhile, I listen to hours of Stjepan Hauser, the Croatian cellist whom I adore, and the Mormon Tabernacle Choir and the hymns that I grew up with that still bring me such comfort in my old age.

“Look for the light.” The darkness can be powerful, but the light is more powerful still. It is the light of the Spirit who extends grace every day and waits patiently for me to take hold again when I am stumbling. And I am restored.

And I’m very okay with that.