As my first year of chronic illness drew to a close, I often struggled with despair. I say “struggled” because every time I felt the despair, it was quickly followed by an admonishment to myself.
Despair might have made sense nine months ago, I thought. But still? Now, so many months after diagnosis? I vaguely believed that by now, I should really be over this.
Part of my ongoing despair was actually about the length of time that had passed since I’d developed ulcerative colitis. It had turned into a whole year of being very sick. The approaching 2015 new year was a reminder of just how long the struggle had been and how much bleaker my life was now than a year earlier.
Chronic illness is aptly named. You don’t really understand the implications of the word “chronic” until you experience it for yourself. It goes on and on and on and on, month after month, year after year, and still it stretches forever forward into the horizon.
I was tired of being sick.
But at the same time, I was also tired of my own frequent tears, frustration, and bitterness, which I thought should probably have passed by now. My illness was making me like myself less.
In late November, I’d had a post-Thanksgiving flare-up that had knocked me down. Now, as the new year approached, I was doing everything in my power to get back to where I’d been before. That would still not mean being healthy, but I at least wanted to be healthier than I was right now.
I was taking two meds, Proctofoam and Apriso. I had pared down my diet to the one meal I knew wouldn’t harm my body: whole-grain brown rice, red lentils or tofu, and steamed kale. I ate this meal, and only this meal, three times a day. (“You’ve found your Safety Meal,” said my mother-in-law.) The only thing I’d added to my diet recently was a forkful of sauerkraut before lunch and dinner, figuring its probiotic effects would help my gut.
And all my diligence seemed to be working. By mid-December, my flare-up was dying down again. I even began to feel more comfortable than I’d felt over most of the past year. I have almost no blood and almost regular poop, and virtually no pain, I wrote in an email to a friend who also had colitis. I was still not well—my energy was up and down, and sometimes I felt a little feverish—but I was better than I’d been in a long time.
Which was why, I thought, I shouldn’t still be feeling so down so much of the time.
Sometimes I compared my despair to how other sick people seemed to react to their fates. I wasn’t sure I measured up well. Even people whose illnesses seemed far worse than mine often seemed more accepting than me.
FDR was unflaggingly cheerful despite his polio, even when he was only with those closest to him. My best friend had died of cystic fibrosis when we were in college, and she had almost never talked about her illness. I couldn’t remember ever once seeing her cry about it.
Every time I cried in Ron’s arms, I felt like a big, fat (well, skinny) baby.
So as the 2015 New Year approached, I tried very hard to be positive. It was time to stop wallowing, I told myself firmly. I pushed my despair aside and counted my blessings. I still had my mind. I wasn’t disfigured and could hide my disease when I wanted to. I had loving people around me. I had enough financial stability to take time off from working. Ron and I had successfully moved to Portland and were near my family again. And we’d bought our first house, and he’d found a job.
All of that was very good. I should focus on that, I said to myself.
Each December, my family goes to the Portland Revels, a folksy musical celebrating the winter solstice. Actors wear colorful medieval costumes, and the audience is taught several of the songs and encouraged to sing along.
This year’s Revels was to be my first in several years. I was determined to go, even though I’d be tired and might need to rush to the toilet in the middle of the performance. Family traditions like the Revels were part of what had drawn me back to Portland.
I brought my own food to the restaurant for our annual pre-Revels dinner and used the bathroom before we left the restaurant. In the auditorium as we awaited the performance, I sank back in my seat and held Ron’s hand, my slight fever flushing my face. It happened that our seats were near the front of the room, far from the bathrooms. I had taken the aisle seat just in case. My free hand rested on my belly, hoping it could tolerate my sitting upright for the next couple hours.
As the lights dimmed and the audience grew quiet, a happy glow enveloped me. This part, at least, was what I remembered from previous years. Through my feverish haze, I breathed a sigh of gratitude as the actors glided across the stage in their long dresses and colorful robes. For a while I lost myself in the distraction of the show, singing along when it was time, smiling at the silly jokes.
Just before intermission, a few cast members always descend from the stage and lead the audience in singing and dancing to “Lord of the Dance,” one of the few Christian elements of an otherwise pagan show. People—kids, their parents, and the bravest, least self-conscious adults—skip slowly down the aisles holding hands, forming a ragged line that winds out into the lobby then back into the auditorium.
As the line of dancers approached our row, a thought came bubbling to the surface of my mind: I am not always able to dance. I should dance tonight, while I can.
Ron and my family grinned up at me as I stood. I beckoned them, but they all demurred, even though, of all of us, I was the least able-bodied. I turned and broke my way into the line of dancers.
I felt genuinely happy. It was great to be here. I’d made it through one act; I was even dancing!
And as our dancing line approached the lobby, a brilliant idea occurred to me: I could cut out of the dance and scoot to the bathroom before the song ended, thus preempting the intermission lines.
It worked. In the lobby, I peeled off and ambled away from the music and off to the bathroom, which was totally empty. I was pleased with my own genius.
Returning from the bathroom, I found Ron in the tight intermission crowd. He was talking to a friend, their voices carrying over the din of the packed bodies in the lobby. The friend, a young woman, worked in a school like he did. Finding his hand, I leaned against him wearily and listened to the two of them chat. It turned out they were talking about food.
“Are you going to get a brownie?” she was saying. Tables nearby held delicious-looking chocolate brownies and other wintry treats for sale, all of which were, of course, totally out of the question for me.
Ron jovially patted his belly. “I’ve already had enough stuff like that this week.”
“Oh, I know!” she exclaimed. “At this time of year, there’s always so much candy in the teacher’s lounge.”
“The other day, one of my students brought me this huge piece of chocolate cake,” Ron said.
“Yes! A parent gave me a cinnamon roll yesterday.”
They went on like this for a while. Everyone at work always brought cookies and cake at this time of year, they complained. If you weren’t careful, you could just eat them all day long.
“The other day, I didn’t eat breakfast till 2 pm,” Ron lamented. “I wasn’t hungry. There was a reason.” He grinned.
She laughed.
I sighed to myself. As usual, my free hand was resting delicately on my gut, and now I wanted to soothe my gut against all this callous talk of sugary treats. A sort of echo of pain had been resonating in my belly today. Not pain, exactly, but a foreboding weakness, the feeling that all was not right. It’s a feeling only someone acutely tuned in to her gut can sense. I was like a psychic these days. I could read my gut’s mind.
I became aware of Ron glancing at me. At a pause in the conversation, he quietly asked, “Is your gut bothering you?”
I shook my head.
The friend soon slipped away into the crowd. Ron glanced at me again. “Are you okay?”
I shrugged, then finally raised my head off his shoulder and looked at him frankly. “It’s a luxury to be able to complain about all the sugary, unhealthy foods you have to be careful not to eat too much of.”
He blanched. “I’m so sorry.”
As usual, I felt bad for my bitter comment. I hadn’t been gracious. FDR would have just smiled.
The new year dawned.
January was good, overall. It really was. For the first time since my symptoms had begun in October of 2013, 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. This month, with the help of my meds and my severely restricted diet, I sometimes felt almost completely healthy.
But my newfound health was tenuous. I was still on Proctofoam and Apriso, and 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.
I asked my gastroenterologist if I could wait an extra month before tapering off the Proctofoam, just to keep my body (and spirit) out of potential trauma for a little longer. It was such a relief to be free of daily worry and discomfort, I explained. He agreed.
So I alternated between exuberance at being healthier and fear of more illness to come. The fragility of my own health frightened me. At times, my mood careened into a deep, precipitous chasm.
I’m starting, for the first time, to be able to fathom never going to Africa again, I wrote in my journal one day. And/or never having kids. Ron said he’s been mentally trying to prepare for the latter. It was a really good talk yesterday about that. I cried a little. We’d be such good, sweet, loving parents. But I imagine it now, how life could turn in a huge, unexpected direction. Me sharing these quiet lifelong pangs with Ron. Dreaming of another life, of traveling in Africa or walking with children or both. But here instead, living simply, trying to want only what we already have.
Another day, I wrote of another bout with tears over not having a baby. Ron held me as I cried. He never makes me feel inadequate, I wrote. He said no matter what, he’d want to be with me. I’m so lucky.
In February, I talked to a minister at the local UU church. I’d never been much of a churchgoer, but in December I had joined this church in recognition that for some reason, this thing I was going through was harder than anything I’d ever experienced. I needed more support now than ever before.
Unitarian Universalism fit with my spirituality—it has no dogma, and many parishioners are agnostic or even atheist. Maybe this church could help me.
The minister, a woman a few years older than me, listened quietly as I described my struggle with illness. This struggle differed from anything I’d experienced in my life. I’d been through many ordeals—my parents’ divorce, my father’s alcoholism, my best friend’s and father’s deaths, a nasty break-up—and yet somehow, this disease felt worse, more visceral and foundational, than anything I’d ever encountered. I didn’t understand why.
As I spoke, I found myself couching my story in apologies. “I know this isn’t the worst illness I could have. I mean, it’s not cancer.” I described my awareness of the many privileges I still had, not wanting the minister to think I was ungrateful or self-absorbed.
When I finally stopped talking, her response was simple and profound. She quietly raised her eyebrows and spoke just one word:
“And?”
And in that single word, she began to reshape my relationship with my despair.
The word contained the acknowledgment that I was right: worse things had befallen other people. But it also contained the permission to grieve, myself, for what I had lost.
It was okay to feel despair. I could understand that I was privileged, and I could also grieve.
The minister told me about Maslow’s hierarchy of needs, the theory that our needs are layered atop each other with the most fundamental needs at the base. If we don’t get those foundational needs met—food, shelter, safety—then it’s much harder to pursue the higher needs, like social acceptance or a sense of fulfillment.
She pointed out that I had lost a foundational need: my sense of basic safety around food. Food had come to feel scary to me. I could no longer count on my body to stay well when I ate. It was no wonder I still often felt despair.
Hearing her take on this flooded me with relief.
I could put aside my shame. That shame had buried my despair underneath a thick shroud, so that I was never able to feel sad for long without also feeling ashamed of being sad.
Really, there was so much I had lost with diagnosis. I had lost, perhaps forever, an easy confidence in my own health and my body, a confidence that had underlain my life so foundationally that I’d never known it was there till it was gone. My illness had snatched it away, snatched my identity as a healthy person, whisked it away dramatically as if someone had come and swept his arm across the desktop of my life and scattered its contents to the floor.
And along with that former identity, I had lost countless real, tangible abilities that confronted me every day, ways my life was now harder and more limited than it had ever been or than it was for most of the people around me.
I’d lost the ability to work full time and support myself and my husband. The ability to travel far from my home without serious worries about my health. Possibly the ability to travel to many places at all, including places I had badly wanted to go for many years. The ability to enjoy the foods that everyone around me could enjoy, and to rely on my comfort foods, some of my main sources of reprieve in times of stress. The ability to eat meals with friends without extensive planning and inconvenience.
Possibly, even, the ability to have children.
Somehow, after talking to the minister about the legitimacy of my despair, I felt less of it. My load had lightened. In the days and weeks following my appointment, I still felt worried and claustrophobic at times when I thought about my illness, but the sun was shining in Portland and the weather seemed to reflect the new happiness I felt.
February was proving to be glorious. Tulips and cherry blossoms were blooming all over the city. As I walked around my neighborhood, I saw their colors more brightly. Without my shame, my despair felt more bearable. The shame had been quite a heavy burden.
I am not built like FDR, it turns out. For whatever reason, I was created as an open book—naturally vulnerable, expressive in my emotions, and empathetic to the emotions of others. Suppressing emotions feels physically toxic to me, like inhaling cigarette smoke. I sense that I’ll somehow pay for it later.
There’s value in discretion, in deciding when and how to express yourself, in the ability to hide your feelings at times. FDR’s stoicism was a mighty, admirable, heroic feat and was necessary for the time he lived and the situation he was in. But there’s also great strength in emotional vulnerability. That’s the kind of strength I do have.
After I finally allowed myself to embrace my despair without shame, I was able to begin truly moving beyond it. It would still be with me at times—like any grief, it would visit me again and again, still searing and full of heartache. But then it would subside. Over time, it would leave me in peace for longer and longer interludes.
It turns out it hadn’t been fair, in that first year, to compare myself to others who were sick. Some people are stoic like FDR—they just are; that’s how they’re built—but also, the grief process has phases. My friend with cystic fibrosis had grown up with her disease. By the time I knew her, she’d already lived with it for eighteen years and had understood its impacts on her life for several of those years.
In the grand scheme of things, the first year with a chronic illness is still very early. At that point, you’re still adjusting, still encountering new situations in which you have to change the easy ways you used to do things. Each new situation—each holiday, each reunion, each annual event—brings with it a new loss.
Only after more time has passed does the disease become normal. And at that point, after you grieve what you’ve lost and move into new ways of relating to the world, and after you give yourself full permission to go through that grief, much of the grief does finally pass.
