Macrobiotics was working. I was sure of it.
I’d been keeping a loose log–no pun intended–of my diet and gut symptoms for the past two months. I kept this log in Microsoft Excel, a program that seemed to have fused with my brain over the years. I’d spent thousands of hours of staring at ecology spreadsheets at work, and had used Excel for wedding planning and to keep track of Dad’s cancer. Now I was using it for my own illness. This spreadsheet had columns for number of BMs, diarrhea, blood, urgency, and other symptoms; and a food column where I marked changes, like adding miso or starting macrobiotics.
And now, a week into macrobiotics, my spreadsheet showed a clear change in my symptoms.
I’d begun macrobiotics two weeks after finishing prednisone. During those two weeks, I’d had three to five BMs a day, all of them with explosiveness, urgency, blood, and diarrhea. But just two days after I added miso soup and began my diet transition, I had only two BMs. I tried not to get my hopes up, but now a week had passed, and two BMs had become my norm. Although there was still blood, the urgency and explosiveness and diarrhea were gone.
My migraine had subsided, as well. Just a week into the diet, I felt better than I had in months.
It was exactly as Virginia Harper had described. Macrobiotics was working magic on my gut! I said this to Ron in hopeful tones, feeling the brightness in my own eyes and the flush in my cheeks. He had joined me on this diet, in solidarity and because it would be good for him, too, unlike the meaty Specific Carbohydrate Diet. He looked relieved to see me feeling so hopeful.
I did feel hopeful. I had a good feeling about this diet. Our apartment was nearly packed, the pile of boxes growing in the dining room, books and knick knacks disappearing off the shelves. In a week we’d pick up and move across the country to start our new life in Portland. Maybe, when we left, I could leave the worst of this disease behind me. Maybe I could get a fresh start.
I was sitting at a picnic table under the shade of an outdoor pavilion. It was a sunny summer afternoon, and the lazy, warm air caressed the skin of my legs under my skirt. All around me, a hundred young people feasted off paper plates laden with warm-weather potluck dishes like quinoa salad and caprese sandwiches. Women wore colorful summer dresses and men wore shorts or slacks; bright flowers adorned the simple tables. Everyone smiled and talked animatedly over the food, elbows brushing, ankles swinging over benches as people sat down with seconds. At the front, Dave and Thaís looked happy, surrounded by family and friends after their ceremony in the oak grove down the hill.
Just behind Dave and Thaís was a large, unused fireplace. Behind that were the bathrooms, public flush toilets discreetly hidden by the brick wall. I was grateful for the toilets’ presence.
Ron was off somewhere, talking to someone else. It was hard for us to stick together in our Madison crowd. With so many people to talk to, we often got pulled in different directions.
This park was where we had gotten married, too, two years earlier. Dave and Thaís had met at our wedding. They loved the spot so much that they said they wanted “Ron and Katie’s wedding,” so as I struggled with my illness this spring, I’d been emailing them advice on caterers, flowers, photographers, and setting up the park. A few nights ago I’d felt well enough to walk to their house just blocks away, joining the group on the street serenading Thaís, who stood beaming out the second-floor window. She is Brazilian and had requested that we follow this tradition. It felt wonderful to sing out with the group, and comforting to know that if I needed to, I could always run inside to use their bathroom.
Now, at the picnic table, I sat across from another pair of friends, Andy and Laura, who I hadn’t seen in months. As they ate off their paper plates, I produced my usual Pyrex container of special food. They eyed it curiously. Thus began the conversation I’d now had dozens of times.
It always went the same. Get togethers almost always involve food, which, I found, forced me to constantly explain myself. At a minimum, I would say I was “having health issues” and eating a special diet “for now.” But my friends tend to be curious, thoughtful people, and everyone knows someone who has had gut problems. We always wound up talking about it. I found myself telling my story over and over.
I would tell it like this:
Last fall–out of the blue!–I started having some gut symptoms. I thought it was nothing, because I’ve always been healthy, always had a healthy gut, never had any problems. But it got worse. So I went to the doctor, and they diagnosed me with this autoimmune disease. It’s called ulcerative colitis. Have you heard of Crohn’s disease? Well, it’s related to that. Crohn’s is worse, though. It’s also related to MS–that’s also autoimmune. You often get it in the prime of life, and they don’t know what causes it. It could strike anyone, and it struck me. It’s been really hard, but I’m also really lucky, because at least I don’t have MS, or Crohn’s, you know? But anyway, I’m still figuring it out, working on getting it into remission with diet. It’s really interesting, to have a disease. I mean, I’ve always been healthy!
I tended to repeat that refrain–I’ve always been healthy–a few times when I told the story.
I had heard myself tell this tale ten or twenty times by now. I had a lot of friends, and hadn’t seen many of them in a while, because of my disease. When I caught up with someone new, I often wound up talking at length about my illness. I was beginning to feel self conscious about it. Each time, I wondered: Was I talking too long, hogging the air time? Was I being too much of a downer? Everyone has difficult things to deal with, many worse than mine. Why did I feel such a need to talk about my own woes?
And while the story was new to the listeners each time, I was always there to hear myself tell it. I was beginning to tire of my own prattling.
I tried to gauge whether I was irritating or boring Andy and Laura. They kept asking questions, eyes wide, faces solemn. I felt endlessly grateful for their listening. Each time I told my story, it gave me a dose of relief. I needed to process what I’d been going through, and it helped to tell the story from the beginning like this, to new people. Thank goodness I had so many friends willing to listen.
I was slowly becoming aware of why I always emphasized my previous good health. I didn’t do this on purpose. It was instinct, the words just flowing from my nervous lips. The more I heard myself say I’ve always been healthy, the more I understood why. It was because this year, I had suddenly found myself on the other side of the glass.
It was a new place for me. An uncomfortable place. I am a white, straight, educated woman in modern America. This was the first time in my life that I was getting to know the other side of privilege.
This word, “privilege,” had been coming up a lot lately in the public sphere. It was a trendy and useful word. I generally thought of myself as privileged. I’m the child of a wealthy, educated, white family. I am a strident feminist and passionate about gender inequality in this country and others, but I had largely escaped the worst effects of that inequality in my own life. I had been buffered by my other privileges.
Losing my health was the loss of a fundamental privilege. On Facebook and in the news and out loud, I had been part of many discussions of privilege, but those conversations were mostly about race and gender and sexuality. When my friends and I talked about privilege over the years, health hadn’t even entered our thoughts.
At some point after getting sick, it dawned on me that “privilege” was exactly the word to use in the case of health, too. Health privilege. It is a privilege to live pain-free. It’s a privilege to have adequate energy, enough strength to work and to raise children. It’s a privilege to be able to eat whatever’s put in front of you, whatever’s available, without fear of illness. It’s a privilege to be healthy enough to play sports, to participate in things. And it’s a privilege to be someone who doesn’t need health care, who can flippantly say, “I haven’t been to the doctor in a couple of years.”
I’d had those privileges all my life. But I’d been only dimly aware of them, until now, upon finding myself here, looking out at the world, blinking and wondering how I’d gotten where I was.
I had the deep, discomfiting sense that some people thought my predicament was my fault. They wouldn’t even know they were thinking it, but I knew some of them were thinking it. I could feel it. My friends showed great and sincere compassion, and yet sometimes, with some people, this other feeling was also there, in the in-between spaces. It was in blank stares, and between the lines of emails, invisible and crystallizing between us.
It was in certain questions, asked certain ways.
What causes your disease? Have you ever had problems before? Does anyone in your family have it? Do you know what brought it on? Sometimes, when asked certain ways that I couldn’t pinpoint, I sensed that buried in all these questions was a hidden one that people didn’t even realize they were asking. How did you manage to do this to yourself?
Maybe I was imagining it. But maybe I wasn’t.
And I knew that in some cases, at least, I wasn’t. Because I had been on their side of the glass before. I knew that unless we have had direct experience with illness, we do tend to otherize people who are sick. It’s a natural, though unfortunate, response. I had done it myself, to Dad.
When Dad’s stomach cancer was still just an ulcer, my sister and I wearied of hearing the same refrains over and over from him. That he was in pain, and tired. That this was a really big deal, Katie, it really was. That he was missing work; that the diet doctors recommended was too hard, too bland and boring. Dad had always complained a lot. It took work to keep conversations positive; I’d long had to pump myself up to call him, and usually felt exhausted afterwards. I always got in at least one fight with him when I visited him in Florida.
So until he took a leave of absence from work, I didn’t believe that his ulcer was as serious as he made it sound. But it was.
And until I visited him in the hospital after the “ulcer” was removed, I didn’t believe he was being mistreated by the VA as he described. But he was.
A lifetime of listening to Dad complain had numbed me to his complaints. He had cried wolf too many times. And when he was diagnosed with cancer, my sympathy was tainted by the notion that he’d brought it on himself. This was stomach cancer, and the cause was unknown, but didn’t it mean something that he’d smoked like a chimney? Didn’t it count for something, that he’d eaten terribly his whole life? Surely he must have known there’d be consequences.
Only after months of researching cancer, and realizing that some people abuse their bodies for decades but never get it, while others live in perfect health but do get it; and after months of watching Dad suffer; and after growing more and more incredulous and outraged at the VA’s incompetence; did I finally realize I’d been blaming Dad for something that he didn’t deserve at all. Not at all.
Dad had upped his odds of disease, sure. But that wasn’t the same as causing it. And regardless, he didn’t deserve it. My subtle impression that he had caused his disease formed an invisible barrier between us. It hindered my compassion for him.
By the time I recognized my own prejudice, Dad was in hospice.
Lately, as my struggle dragged on and I told my story over and over, I had begun to feel overwhelming sadness about Dad. I sensed myself reaching out to my friends, grasping at them, trying to get them to understand what was happening to me, and that it was happening to me, not because of me. It must have been what Dad felt when he told me about his pain. Trapped. The more I told my story, the more I felt a terrible, gnawing, torturing guilt over not paying more attention to his suffering. Dad did not have many friends. He only had Jeannie and me, and his siblings, and perhaps one or two others at most. Now I understood the desperate need to share pain with others, to process it out loud even if it becomes repetitive. Dad had shared his pain with me, and I had privately wearied of it, although I’d tried to hide that from him. Now I agonized over the possibility that he’d sensed my weariness. I felt crushing shame over the loneliness he must have experienced. With all my heart, I wished I had flown to him in Florida when his pain first forced him to leave work, before we even knew it was cancer. So what if it was just an ulcer. Pain is pain. It is made more bearable through companionship.
And I wished with all my heart that Dad was still alive so I could tell him I was sorry.
So, even before my own illness, Dad’s cancer had taught me about otherization of ill people. I came to believe that we otherize them to protect ourselves. It’s unconscious, instinctive: By otherizing the sick person, and believing they somehow caused their own predicament, we maintain a false sense of control over our own destinies. It was comforting to believe Dad got cancer because he smoked, and didn’t eat well, and never learned to process his stress. All I had to do was stay fit and manage my emotions well, and I could avoid his fate.
But it doesn’t really work like that. After I realized this, I became skeptical of old people on the news, centenarians who insist that they’re still alive because of a positive attitude. They always seem to forget that they’ve also been incredibly lucky.
Now, with my own direct experience of illness, the more I told my story the more I understood what I was really saying with each telling. I wanted my friends to fully, totally get that this could have happened to any of us. That I was still one of them. That I still loved hiking and camping and canoeing and eating sugary, fatty, delicious food and drinking red wine and playing Frisbee. That it wasn’t my choice to quit all of these things. That whenever they had been together without me, reveling in summer, my absence was only due to my own sheer rotten luck. I hadn’t done anything to put myself behind the glass. If I could just make them see that, then maybe I wouldn’t feel so unbearably alone.
That was what I was really saying to my friends. See me, see me, see me.