All my wonderings about the Why? of my illness had broad implications, from the practical to the deeply spiritual. The hardest thought of all was that possibly, I had somehow brought my suffering on myself.
In the first week after my life-changing appointment, as I raced to understand ulcerative colitis, I began to experience a crushing regret. No matter how many websites said You didn’t cause your disease, I couldn’t shake the notion that I might have–for instance through poor diet and lack of exercise. The thought tortured me.
I desperately wished I could travel back in time and kick some sense into myself. I emailed Mom and my sister Jeannie:
this illness is going to totally change how i think about food. i’ve long wanted to research diets and alter my eating habits; now i’m being forced to, and it’s a crash course. i wish so badly that i had done this years ago.
Their responses were sympathetic. Mom, a former therapist, added:
It also seems counterproductive to wonder if you have brought this on yourself. Compared to most people I know, your diet has been very good.
I agreed, in theory. Regret was counterproductive. But I wasn’t sure my diet had been so good, and regardless of theory, it was almost impossible to stave off this feeling that at times threatened to overwhelm me.
Although I had not known I was at risk for colitis, the fact was that I had known my behavior was generally unhealthy. I had taken my health for granted. All my life, I had watched my father abuse his body with bad food, cigarettes, alcohol, anger, and anxiety, then in 2012 he had died at age 67 of a rare disease–stomach cancer. As in my own case, there was no telling what had caused his cancer…but his lifestyle couldn’t have helped. Now, in the wake of his death, I judged myself severely for not taking my own health more seriously. I should have known better.
My thoughts often spiraled out of control. Why, why, why hadn’t I tried to eat a healthier diet my whole life? Why oh why hadn’t I worked harder to be calmer, less anxiety-prone? Maybe if I had done certain things better, I wouldn’t be in this horrible alternate universe.
All this regret was adding to my stress, which was stressful, since I believed stress was a factor in my illness. I was stressed about stressing.
Each time a new avalanche of regret fell upon me, I fought to dig myself out.
No. Mom was right: My diet might have been unhealthy at times, but other people eat far less healthy than me.
No. I might tend toward anxiety, but many frantic-yet-productive people are disease free.
Look at all the actors, executives, athletes, I thought to myself. Look at every President, ever! Look at my own mother, or my dad’s mother, both of whom had always been busier than me. (When Mom took us to contra dances as kids, around midnight Jeannie and I would practically drag her away, complaining that we were tired and it was time for bed.)
I couldn’t have known that I would be the one to fall ill, I reminded myself. Or even that I was at risk. You just can’t research every possible disease you might encounter, and you can’t blame yourself when you happen to get one of the obscure ones.
Sometimes, cooling thoughts like these would work and I could coax myself out of my regret spirals. Whenever I succeeded in absolving myself, a flood of relief washed through me. I always felt infinitely more at peace with my disease at those times. It seemed that I could tolerate the fact of having a chronic illness…but I just couldn’t bear the notion that I was to blame for it.
One other thought consistently helped: that I could at least take action, now, to prevent further disease.
Without a time machine, I couldn’t take my old behaviors away. But I could still do everything I could do, right now. There was a 25 or 30% chance that my proctitis would progress to more of my colon, becoming full-blown colitis. There was also a chance that I would not be able to control it with diet or mild meds, and that if it worsened, I would need immunosuppressants with scary side effects. And, because autoimmune diseases come in clusters, then if I didn’t figure out how to stop stressing my poor body I might even develop an entirely new disease on top of this first one. My task, now, was to cut my losses and prevent any of those three things from happening. Or at least, to do everything I could to prevent them. Then, if I did get worse years from now, I would at least have no more regrets.
Now it was months into my illness, and I was armed with an ever-increasing knowledge of digestion, inflammation, and how to foster general health and colon health. I had a collection of many concrete actions I could take. I could eat my macrobiotic food, which definitely helped. I could exercise. I could take turmeric, a benign anti-inflammatory herb. I could find myself a good doctor near our new home in Portland. All of these plans and actions were restoring a semblance of control over my life–they were empowering. That was crucial.
I felt certain that never again would I be blasé about health. That way, even if my disease did progress in the future, I would at least know that it wasn’t my fault.