The worst thing about New England is that spring comes all at once and after such an interminable limbo, instead of as in England in a slow sequence, which starts in January with snowdrops and crocuses and moves on to daffodils and fruit trees in April so one has time to taste each resurrection. ~ May Sarton, At Seventy
In the days after my meeting with the minister and with Lucy the craniosacral healer, I felt as though a weight had lifted. I was on a high. Both sessions had been powerful and had helped me connect with nameless but important parts of myself. Maybe all Lucy’s hand waving had done something, after all. Who knew?
Even the weather seemed to express the hope I felt. Day after glorious day dawned clear and bright, without Portland’s usual winter gloom. Tulips and daffodils and bright green leaves were sprouting everywhere on my walks around the neighborhood. Buds appeared on cherry and apple trees. Never had I so appreciated Portland’s long, luxurious spring. In Madison, before we moved here, I had warned Ron of the interminable winter rains and bleak, white-gray sky. “We might go months on end without seeing the sun!” I had told him. But I had forgotten the way flowers emerge in February, and this year, with the utter absence of the usual long rains, I delighted in the sunshine and bright, fresh colors.
It felt as though the turning season represented a change in fortune for me, as well. The weather gave me a sense of optimism. And that optimism played a role in a pivotal decision I made about diet.
Since December, my symptoms had been improving. By the time of my two spiritual appointments, my health was the best it had been in the seventeen months since colitis had begun. For the first time since then, my stools were consistently more solid, not diarrhea, with no blood. They were still not normal, but as the weeks passed I was getting used to letting go of the trepidation that had accompanied trips to the bathroom. My abdominal pain and urgency were gone.
Perhaps best of all, by February my old energy was back in full force. At last, I was considering reentering life by finally getting a job.
This healing was not due to any miraculous link between my two spiritual sessions and my body. Surely they had helped in some way, but the bulk of the healing had happened before them. It must, therefore, have stemmed from more earthly, practical sources: my diet and/or the meds I was on.
I suspected it was both. Since just after my Thanksgiving flare-up, I had been on two meds, Apriso and Proctofoam. This was a similar regimen to the one of nearly a year earlier, but this time, I was also eating macrobiotically. For two-and-a-half months I had maintained a strict, conservative intake of only whole-grain brown rice or brown rice noodles, tofu, red lentils, and well-cooked kale, plus sesame oil and tamari for fat and flavor. This was a dramatic departure from my diet of a year earlier, which had not been antiinflammatory or particularly nutritious. That diet’s main focus had been reduction of fiber. It had included many refined grains, meats, and sugary foods like bananas. Macrobiotics was much more balanced. And nowadays I was downing a couple forkfulls of sauerkraut with lunch and dinner for probiotics, which seemed to be helping as well.
When I told my sister about my exciting improvement, she said, “It makes sense that the meds wouldn’t have worked before, if you were poisoning your body in between taking them!”
Exactly. This time, I was eating only gentle, healthy, soothing foods. That allowed the meds to work their antiinflammatory magic.
But while my newfound health provided a reprieve, it was tenuous. The Proctofoam was a short-term med. Going off it would be like removing a Jenga block at the bottom of a tower: until touching it, there was no way of knowing how big a role it played in shoring the whole thing up. My health might come crashing down again afterwards. Over the winter, I had alternated between exuberance at being healthier and fear of this possible future. In rare moments of pausing between activity, the fragility of my own health frightened me.
In January I had asked Dr. L, my gastroenterologist, if I could wait an extra month before tapering off the Proctofoam. Could we keep my body (and spirit) out of potential trauma for just a little longer? I needed a rest from being very sick. He had agreed.
Now it was February, and I was tapering off the drug. So far, my symptoms were holding steady. That fact added to my high after my two healing sessions. Maybe the worst of my illness was behind me!
But there were still three more Jenga blocks shoring up my health. And I wanted to tinker with another of them, as well.
One of the blocks was Apriso. Possibly, this med was the reason I was healthier, though I doubted it. Apriso is a form of mesalamine, and I had tried several other forms, none of which had worked until I was on my current diet. I strongly suspected, again, that diet was the reason Apriso was working. I wasn’t sure Apriso was doing anything at all. Still, mesalamine is a mild med with few or no side effects or long-term risks, so I didn’t mind staying on it. This block could stay in place for now.
Another Jenga block was sauerkraut, which I did believe to be helping. I continued to crave it and dislike it at the same time. When I ran out or forgot to eat it, my stools softened within a day or two. I suspected this food was providing the bacteria my body no longer harbored on its own. Sauerkraut was like my body’s version of a diabetic’s insulin. And like the Apriso pills, it wasn’t hindering my life too much. I was willing to keep this block, too, in place for now.
Which brings me to the third Jenga block: my diet. It was this block I wanted to pull out.
Several months ago, I had declined a doctor’s offer to go on riskier, immunosuppressive meds, opting to explore ways of healing through diet instead. To my great satisfaction, I had now found a diet that worked for me. Perhaps, if I stayed on this one-meal diet forever, I could get myself all the way into remission and live out my life without any strong, risky meds.
The problem was, after nearly three months of eating the same exact meal for every single meal of every single day, I was realizing the high price of healing through diet.
There was, of course, the monotony. But actually, that wasn’t the problem I had with this diet. Incredibly, my taste buds had adjusted. My single meal was often the meal that I craved when hungry–I got hungry for the rice and lentils and tamari. To my taste buds, my meal had come to equate with the word “food.”
There was the problem of my weight, which was a concern. On macrobiotics I was no longer losing weight, but I wasn’t likely to gain much, either. I still wanted to have kids, if possible, and to have kids I needed to gain weight, so something was eventually going to have to change.
But the weight issue wasn’t my biggest issue with this diet, either.
No, the problem wasn’t monotony, and it wasn’t really my low weight. The problem was claustrophobia. On this diet, I could live a life without risky meds, but I couldn’t live the life I wanted. I couldn’t fully participate in the world.
I couldn’t eat out. Restaurants might occasionally serve whole-grain brown rice or overcooked kale, but for all practical purposes, there were very few ways I could join other people for meals unless they ate at my house. It was depressing to have to explain this to each new acquaintance I met in Portland, or even worse, each new professional contact. I had lost my Madison community of people who knew me before I was ill–in Portland, everyone I met learned immediately about my illness. At coffee for an informational interview, my new professional contact would offer me crackers and I would decline, with a brief, regretful comment that I had a restricted diet. She would raise her eyebrows and mention her own gluten intolerance, and, not wanting to sound cagey, I would just go ahead and say the name of my disease. It didn’t seem like the most professional way to lead into a discussion of my background. But because of my strange diet, ulcerative colitis had a way of bullying its way into conversations.
Even worse, on this diet I couldn’t easily travel or camp. Those two activities were core elements of my being, and I couldn’t imagine going through many more years without them. I hadn’t camped at all in 2014.
I had gone on two small trips this winter. In December, Ron and I had flown to Maryland to visit his parents, and a few weeks later we joined friends for a ski weekend in Bend, Oregon. Both trips had been a triumph: I was getting out of the house, out of the city! But they also made it clear how limited I was. On this diet, the only way for me to travel was to essentially bring along and cook all my own food. In Maryland, we had gone straight from the airport to Whole Foods, and I had spent hours cooking my own food in Ron’s folks’ kitchen. In Bend, when Ron and I arrived wearily at our AirBnB after a long drive on scary, dark mountain roads, we greeted our friends then I hastened to the kitchen and began cooking my meals for the weekend.
Until something changed, I could never again do the kind of travel I loved, and which I had done many times in Africa: hopping from town to town, staying in guest houses or hostels, making decisions on the fly. It was hard to imagine red lentils, whole grain brown rice, and sesame oil being findable in rural Tanzania. Or even rural Spain, for that matter. My diet required cities with health-food stores, and living quarters with kitchens, and time to plan, shop for, and cook all my own meals.
So, after months of my diet’s suffocating isolation, I was finally wavering on it. Most people who healed their bodies through diet seemed to tolerate far more foods than I could. Ron’s mom, with her celiac disease, could look for gluten-free menu options. Virginia Harper, who got her Crohn’s into remission with macrobiotics, could eat lots of different cooked vegetables and whole grains. But whenever I had tried to expand my macrobiotic diet beyond my one meal, my symptoms had worsened. I had never heard of anyone tolerating only one meal, and sticking with it. What kind of a life would I have, if I could never go abroad, camp, or eat away from home? Not the life I wanted.
Maybe–I couldn’t believe I was even thinking this–those risky, toxic, immunosuppressive meds wouldn’t be such a bad idea, after all. To my surprise, I was discovering that I might prefer taking toxic meds to being trapped in my home with my weird food for the rest of my life.
So I decided to tinker with this Jenga block. Carefully.
I wasn’t going to return to how I’d eaten before colitis. No more sugar for me. But I wanted to expand my diet to the point where, eventually, I could eat out and travel again, and also gain weight. I just wanted some basic staples: gluten, meat, the ability to eat a little cheese or butter. If I could tolerate all those, I would have vastly greater options at restaurants and when on the road. And the changes would help my weight, too.
It was possible that, after I added those basic staples in, my body would rebel and I’d be thrown into another flare-up. But if that happened, then instead of backing off on my diet, I planned to revisit my meds with Dr. L. Whatever happened, I never again wanted to go back to my current level of social isolation–my current one-meal diet.
In February I began to add little things here and there, experimentally. Meat was the first addition: the occasional sautéed ground beef, or a strip of bacon (o wondrous, glorious bacon!) on the side of my special meal. Meat is easy to digest compared with starches, and I could use the fat and protein. Also, I was probably low on iron after the past year. I made sure not to add any meat within a week of changing my Proctofoam dose, so I could watch for results. And to my relief, when I added the meat in this cautious way, I didn’t notice any increase in symptoms.
As the cherry trees put out their buds and the days continued to dawn bright and blue, and my energy and intestinal comfort and overall happiness continued to hold steady, I felt optimism about my diet decision. I might just get away with this! My health was returning. I knew more, now, about how to be healthy. Possibly, hopefully, I could expand my diet and still never need stronger meds.
But after enduring my claustrophobia for three months, I was now willing to risk needing them.