When I met with Alison to talk about our mutual illness, she asked me a powerful question: “Did you have a lot of stress, leading up to the time when your symptoms began?”
Others had asked this too, but it felt different coming from them. Up to now, whenever someone mentioned the possible connection between my emotions and my illness, it had always made me angry. I hid this from whoever was talking. I would just nod and smile at whatever nonsense they spouted: Had I heard about how introversion causes gut diseases? Or how wherever we hold tension is where we get sick? Wasn’t it interesting how their friend with colitis was also very cerebral, just like me?! I loved all these well-meaning people, and because I loved them, I didn’t yet know how to handle their well-meaning, but totally off-putting, comments.
I will write more about this later.
What I did know was that when Alison asked her simple question about stress, I wasn’t put off. She shared my disease. There was no hidden blame in her question, no otherizing. This gave me space to really think about the question itself. And the answer came easily, with relief: Yes. I had been incredibly stressed in the two years leading up to my illness. Recently, I had been thinking so much about diet that I hadn’t given much thought to this aspect of things.
I gave Alison a slow nod, and told her my story.
2012 had started off happily. It was going to be a great year. In January I dropped down to part-time at my job to fulfill the life dream of writing a memoir. After almost a decade, I was finally going to write about my village in Tanzania, my years in the Peace Corps, and the beginnings of my romance with Ron. The stars had aligned for me to do this project now and I was thrilled. I couldn’t wait to write that story! And also, Ron and I were going to get married in the fall. This was going to be my big, romantic, Me Year.
Except that shortly after I began writing, the stars fell completely out of alignment when my dad was diagnosed with stomach cancer. I began spending all my time on that instead, calling him and his caretakers and flying back and forth between Madison, Wisconsin and Gainesville, Florida, where he was hospitalized. His disease got worse and worse despite all of my sister’s and my and his siblings’ efforts to help. In June he was declared terminal and put into hospice.
During this rapidly unfolding tragedy, my commitments back home were also ramping up, not down. There was the approaching wedding with all its logistics. Suddenly, because of Dad’s cancer, Ron and I had no time to contemplate things, to gather ourselves and examine our relationship before taking the plunge. We barely had time to plan the wedding in the first place!
On yet another front, there was trouble brewing at work. Ron and I worked together at the Wisconsin Department of Natural Resources. We’d been hired there just after finishing twin master’s degrees in soil and water conservation, and for years we’d been working on the same projects, even sharing a large cubicle when I was in the office. (We called it our double-wide.) It was fun to work together…but recently, a higher-ranked colleague had begun stealing credit for our hard work.
This was maddening, and incredibly toxic. It happened like this: We would complete our pieces of a project and ask this colleague if he had completed his own pieces. He invariably had not. We would then try all sorts of tactics, in a series of meetings and interactions over the span of weeks, to get him to do his work, including offering to do it for him. He would insist that “his” pieces be reserved for him, but then he would not do them. Finally, we would go to supervisors to make him finish his pieces. Supervisors, too, would spend weeks getting after him to finish, and eventually, finally, he would. The whole process would take months, delaying each project. Once one of his pieces was complete, the cycle would begin again. This year one of our main projects was finally nearing completion, but this colleague was brazenly insisting that his name remain ahead of ours in the credits despite his various delays, his general incompetence, and the fact that we had done virtually the entire project without him. When we protested to supervisors, we discovered that because he was unionized and we were not, there was nothing the agency could to do. If we wanted full credit for our work, we would have to hire our own attorneys. No one could discipline him or advocate for us, although supervisors were sympathetic.
As this toxic situation dragged on, Ron and I oscillated between venting our anger to friends (who surely grew weary of our repeated complaints) and deciding not to mention work to each other at all. It was just too infuriating to think about.
Finally, alongside all these other stressors, in 2012 there was Reach Out Wisconsin. Reach Out was–and is–a civil political dialogue group that we had co-founded in 2011, back when our personal life had been carefree and full of extra energy. Following the election of Governor Scott Walker, we had joined with a local Republican couple to foster respect and understanding in Wisconsin’s divided political scene. Each month, we hosted a public forum on a “hot” political topic like abortion or gun control, encouraging attendees to talk civilly with each other, which they largely did. It was rewarding and educational…but the problem was, in 2012 it was becoming a success. Forums regularly had 30-60 attendees, and the media had begun to discover us. In the spring and summer, we got a flurry of requests for interviews with local papers and TV news stations, and a few times were on Wisconsin Public Radio or NPR. It was all very exciting–but it was happening at an impossible time.
All year, in 2012, I felt the reins of these four galloping horses in my hands: Dad’s cancer, the toxic work situation, the wedding, and Reach Out Wisconsin. Each of these issues, on its own, would have been very stressful, but bundled all together they were almost impossible to deal with. And while any of the four would feel urgent in a normal year, the cancer of course eclipsed them all.
All year, I needed every ounce of my mental, physical, and emotional capacity to deal with the constant bombardment of stress.
We were married in September, and Dad passed away three weeks later, in October 2012. That winter, I collapsed in on myself. At work I returned to full time to build up my savings again, but I stepped down from everything else. I slipped away from my leadership role in Reach Out Wisconsin, attending forums but keeping to the sidelines. I stayed home during most social engagements. I needed to rest and absorb everything that had just happened.
I welcomed 2013. I needed a reboot. Maybe this year could be “my year.” I dropped again to part time to begin writing, although I discovered that my memoir plans had changed. Instead of writing about Peace Corps, I needed to write about Dad. His death had brought my complex relationship with him to the forefront of my mind: his alcoholism, his depression and anxiety, his bouts of anger. As the lake froze out the windows and the bright, clear winter light shone into our warm little apartment, I began writing the story of my childhood and of the healing that finally took place between Dad and me as he lay dying. It was a deep, intimate, all-consuming project. And it was challenging. In telling my story, I spent the year reliving buried traumas from my childhood.
That year, my stress was not as frantic and urgent. But a new kind of stress rose from deep within me, like some dark demon that had been unearthed.
Ron and I began to have terrible fights. Now that the wedding was over, we were talking about having a baby, and there is nothing like considering a baby to bring up all the anxieties in a marriage. The anxieties were mine, and they were heightened as I wrote about Dad.
A central theme of my childhood was the unreliability of my father. He would fail to show up for weekends together, or would fall apart emotionally without warning, triggering crises involving bouts of his tears and anger, and sometimes rehab or hospital psych wards. Ron is very different from Dad, except in the best of ways. Both are (or were) sweet and intelligent and caring and funny. While Dad was anxious and could not sit still, Ron is gentle and laid back. But he slightly resembles Dad in one way that triggered me in 2013. Ron is famously late and slow, prone (back then) to producing Valentine’s Day cards in June or Christmas cards in March. He would forget groceries I reminded him about in six different ways. My father’s unreliability was vastly different from Ron’s, but every time Ron forgot something or showed up late, this year it sent me into a tailspin of stress and fury. What if I couldn’t count on him to help me parent a child? What if, like my mom, I’d have to essentially raise my children alone?
We fought and fought. By late 2013, I sought out a counselor to sort out my feelings. The fights began to gradually resolve, and by the time we went to Spain and Morocco in March 2014, Ron and I felt closer than ever. We were ready at last to take the plunge with a child. But in the meantime, by that winter I had developed colitis.
My doctors said that science has shown conclusively that stress doesn’t cause colitis. But I firmly believed that something had caused my colitis, and that something, whatever it was, must have happened recently, because my gut had been healthy my whole life. (I’d always had just one bowel movement a day, and not to toot my own horn or anything, but they were good ones.) Science has shown that stress is linked to inflammation in general, for instance here. And some scientists apparently do think there is a link between stress and UC onset, for instance here.
I knew many people whose illnesses–celiac disease, heart conditions, autoimmune disorders–occurred following times of peak stress in their lives. They tended to feel that the stress and the illness were indeed linked. Was it possible that the same thing had happened to me?