Now that I view the scene in retrospect I see it as a very gentle and firm deportation, taking me from the country of the well across the stark frontier that marks off the land of malady. ~ Christopher Hitchens, on his first experiences with cancer
People who have sought healing everywhere else are often afraid to look within, afraid to find, at depth, someone insignificant or even unworthy. Yet this is rarely the case. The soul is our birthright. At depth, everyone is beautiful. Often it is the discovery of the “spot of grace” that heralds the beginning of our deepest healing. ~ Rachel Naomi Remen
I’ve written a great deal about the physical changes that came with ulcerative colitis. The new medications, the indignity of my symptoms, the many changes to my diet. My pain and fatigue. But I haven’t written as much about the emotional side of things. Perhaps that’s because, in the first few months with my illness, I was not attending to that side of things myself.
True to form as a doer and a fixer, so far I had been working frantically, trying to learn and do and fix my way back to normalcy and health. But one day, in a moment as ordinary as any other, I had a thought that shifted how I saw my illness and my life. It happened just a few days after starting the Specific Carbohydrate diet, before my symptoms greatly improved, during one of the worst periods of pain and discomfort I had ever experienced.
I wrote about it in my journal.
It’s about three months since my colitis diagnosis, and almost exactly two months since that life-changing appointment. Has it only been two months? Spain and Morocco seem ages ago.
Tonight, reading next to Ron on the couch, it occurred to me that despite all my efforts there’s something huge missing as I wrestle with colitis. I’ve still, even now, sick, been too much inside my own head. Our apartment is strewn with books, a dozen of them, from the library: about autoimmune disease, diets, digestion. (I already returned the four books I read right off the bat about colitis specifically.) I’m being a scientist.
But I’m missing an important, vital opportunity: the spiritual side. The chance to really grow…not just learn a new body of knowledge. To exist, as Pema Chodron says, in the places that scare me. To train and hone my thoughts, my feelings–towards gratitude, appreciation, loving-kindness in the face of adversity.
I am in a place that scares me. I’m especially scared because it’s a new place. I’ve been to see Death before, and love, and broken, twisted-heartedness. But never physical vulnerability–never for more than a few days or weeks. This is chronic pain I’m dealing with. The kind that, when it hits, takes a lot of the meaning out of everything. Like the moon tonight, so pure and shining white in the blackening sky as Ron and I walked, fatigued, back home from the park–Yahara Park is the farthest I have energy to go, if at all, most days. I looked up and registered that the moon was beautiful and tried to appreciate it, but what I mostly noticed was the absence of emotion because a thick filter of stomach pain–which comes and goes, the last couple days–was drawn across my eyes. I didn’t care about the moon. Or the trees, or Ron, or anything else. Just about making the pain go away.
Is that what it’s like when you’re dying? Tedious and veiled, something you just want over and done with? So far, unaccustomed to pain as I am, when I’m in pain the only thing I really care about is making the pain end.
I go into these fear spirals, filled with grief (for things I’m not even sure I’ve lost in the long run) and isolation. What if I can’t have a baby? What if it’s never again practical to go to Africa? Or even Andalucia? Claustrophobia sets in and I struggle to breathe. My whole identity is changing, and I desperately don’t want it to.
These are the things I should be–want to be–learning about, too. These are the ways colitis could be a great gift to me, forcing me to finally have to work to be happy in life. I’ve had it so easy so much of the time.
I want to fight, to be a fighter, to scrabble back up and come out swinging. But it feels good to have this yin, too, not just the yang. To breathe into it. To work on acceptance, malleability, letting go.
Colitis was helping me understand chronic pain and chronic illness. It was making me a better citizen of the world in that way. It would make me more compassionate, more alive. For the first time, tonight I felt grateful for all these lessons. I supposed they were the kind of lessons that mostly only come when you don’t want them at first.