Everything I’ve written up to this point feels like the preface. We have finally arrived at the real story, the story I’ve long wanted to tell.
My health crisis in 2016–which I now refer to as simply my crisis–emerged in small increments, frame by frame, like a train crash unfolding in slow motion.
It started as an ordinary colitis flare-up. I was not surprised when I felt the stirrings of my old, familiar gut pain. The pinching in my left side, the deep cramping before a bowel movement, the urgency that sent me rushing to the bathroom, the diarrhea and blood–all of these were disheartening but familiar, even expected. I’d been ridiculously busy for several months. I ate pasta every day, because it was easy, and often felt too busy to exercise. I knew I’d been risking a flare. But my previous flare, seven months earlier in October, had been uncomfortable yet manageable. Within two weeks of its onset, I had been able to work and live with ease again. I figured that, if another flare hit, the same thing would happen again.
Now it was hitting. And it actually seemed like pretty good timing. I just needed to get better within a month, when Ron and I would leave for a road trip around the Pacific Northwest. A month should be plenty of time.
We sat down and made a plan. Our goal was simple: keep me healthy enough not to miss any work. We did the things that had worked in October. I ordered Proctofoam, my go-to flare-up med, and used it twice a day, squirting it up my butt and lying on my left side for thirty minutes to aid its absorption. I upped my intake of sauerkraut and kefir. I cut out refined grains and dairy, as well as the dark chocolate and kombucha I had added to my diet this spring. They might be somewhat healthy, but their sugar wasn’t good for me.
Ron did all our cooking so I could rest. I made a nest for myself on the couch, with a blanket and pillows, my laptop nearby, and other useful items within reach: water bottle, cell phone charger cord, notebook and pen, nail clippers. Ron brought me food on a tray, mostly whole-grain brown rice, kale, red lentils, and tofu, with beef sometimes mixed in. This was the compromise diet I’d been on when I’d first gotten into remission.
By a few days into the flare, I was exhausted. I had forgotten how miserable flares could be, especially when working full time. There was constant fatigue, since my active bowels woke me several times a night. There was the near-constant, gnawing gut pain that made it hard to concentrate or sit upright. Alone in my office at work, I rearranged my laptop’s cords so I could place it on my lap, reclining awkwardly in my rolling desk chair, propping my feet awkwardly on another rolling chair.
The worst part was the embarrassment around all my bathroom trips at work. My office was farthest from the women’s restroom, so each time I went, I had to walk past all my coworkers’ open office doors, my shoes squeaking unhelpfully on the painted cement floor. I hoped no one was paying attention to how often I squeaked past. I gritted my way through meetings and timed my bathroom forays around them.
This flare-up, I decided, was a wake-up call. During this last remission, I had developed amnesia and denial, forgetting the brutality of being sick, even hoping I may never be sick again. I needed to more fully accept that colitis is chronic. It would always lurk in the background. Even in remission I needed to cater to it.
Nothing to do now but suffer through till the Proctofoam kicked in.
For months, my intern and I had been coordinating a watershed science symposium at Reed College. A day or two before it took place, I had a rare mini panic attack. Alone in my office, sinking into my desk chair, I pressed a hand to my chest and struggled to breathe. There were too many projects to juggle, details to track, people to answer to, and I had just been informed of an unexpected grant I had to write at the last minute. When my breath deepened again, I felt shaken. How much, I wondered, had the constant stress of this job contributed to my flare? The only other time I’d had panic attacks was during Dad’s cancer.
The day of the science symposium arrived. It took place on the third floor of Reed’s Performing Arts Center. The nearest bathroom was on the second floor, down one flight of elegant steps that descended through an open, three-story atrium. In the morning, setting up for the event, I found chances to disappear surreptitiously. Each time I hurried down those steps, I felt grateful to Reed for making this a single, unisex bathroom, so I could lock the door and be completely alone.
My goal was to make it through the symposium without drawing attention to my illness. My coworkers knew I was flaring, but I couldn’t bear Portland’s wider crowd of environmental professionals seeing me as sick or feeble. Once, I introduced a speaker to the audience from the podium, then instead of returning to my seat I breezed across the stage and right out of the room. Upon reaching the toilet, I grinned in triumph. My exit had been smooth. No one except my intern would have noticed anything amiss.
I had made it through Week One. By Week Two, the Proctofoam should start kicking in, but by midweek my symptoms were worsening, not improving. Each BM was now preceded by cramping that made me gasp and double over. I remained on the toilet in pain for ten minutes or so, checking Facebook to distract myself, until everything had come out of me. After each episode I would collapse back into bed, a couch, or my desk chair, relieved that the pain was gone. An hour or two later it would return. Because I could only sleep a few hours at a time, exhaustion had become my constant companion along with these cycles of pain.
One day I began to feel feverish. Disconcerted, I left work early, the first time I’d ever left work for a flare. The next morning I got dressed, but felt weak and lay down on a couch. My belly felt more swollen than ever before, as if someone was continually pumping air into it with a bicycle pump. Sprawling belly up, I tried to get more comfortable by draping one leg over the back of the couch and flinging my arms outward, but even then it was hard to breathe or even move. This new sensation lasted all day, as did my fever. I was forced to stay home, eating away at my precious sick time.
Every hour or so, I rushed to the bathroom for another painful stint on the toilet.
From my belly-up position, I called Dr. L. The most pressing question was what to do about my impending gum graft. This procedure had been scheduled months ago and was due to take place tomorrow, and as the appointment had approached, I had assumed my flare-up would improve. Now the day was about to arrive and I wasn’t sure what to do.
To my surprise, Dr. L said it should be safe to proceed with the graft. My colitis was in the rectum, at the opposite end of my digestive tract. Gum work shouldn’t affect it.
This advice was the only mistake Dr. L ever made in his treatment of me.
I figured I was already miserable, so what the hell. Friday morning, I showed up at the periodontist’s glassy clinic. I felt better than the previous day–I’d been instructed to fast, and although I was now hungry, my bowels had slowed and my distention had eased. I warned the periodontist about my flare: I might have to hurry to the bathroom at some point during the procedure. Lying back in the chair, my hands tenderly across my belly, I wearily braced myself for still more pain.
With a little pinch, a drug kicked in: fentanyl. Unbeknownst to me, this drug was making headlines that very day, June 3rd, as the drug that had killed Prince in an accidental overdose months earlier. To me its name sounded neutral–I knew it only as a painkiller Dad had taken in hospice.
After the pinch I felt a relaxing, foggy head rush. A few minutes later, gloved fingers began to reach into my mouth and work on my gums, and again I braced myself, but as the moments passed I felt only varying degrees of pressure. To my immense relief, there was no pain at all.
No pain in my mouth, but also no pain in my gut. For the first time in weeks, my gut felt completely relaxed, with no tightness or urges for the toilet. Fentanyl is a powerful opioid, fifty to one hundred times stronger than morphine. Opioids slow peristalsis, the contraction of the intestines that causes the bowels to move.
As the gum work continued, relief and happiness coursed through me. After two weeks of misery, I was at last utterly, blissfully comfortable. How bizarre that dental work, of all things, could offer such reprieve! Lying back in my happy narcotic haze, I dreamily opened and closed my eyes as the gloved hands worked. They finished; Mom drove me home; I fell into a restful sleep all afternoon.
My rest was short lived.
They had sent me home with codeine. Saturday I awoke to nausea and vomited several times: I had developed a codeine allergy. I stopped taking the codeine and the nausea abated, but for the rest of the day I couldn’t keep food down. Because I wasn’t eating, my gut wasn’t moving, but without the codeine my gums soon erupted in a riot of pain.
I was supposed to feel fine the day after the graft, the periodontist had said. Instead, the pain in my mouth was becoming unbearable. Extra-strength Tylenol was the only painkiller now left to me–more opioids, and their constipating effect, would be dangerous to my inflamed colon. Ibuprofen and aspirin and other NSAIDs are also not advised for people with colitis. So I took the maximum dose of extra-strength Tylenol…but it didn’t touch my blossoming pain.
Once, years earlier, I had flown over the handlebars of my bike and landed face first, breaking both my helmet and my nose. A moment after impact, the pain had exploded across my face, so severe as to render me mute and nauseous. This jaw pain felt like that. Like I was being punched in the jaw, but constantly. It was a lancing pain that exploded continually across my face.
At bedtime, I frantically iced my face, but it worked only marginally. I lost several hours of sleep.
By Sunday, the part of my brain that was not occupied with pain decided that this was the most physically gruelling ordeal I had ever experienced. Climbing Mt. Kilimanjaro had been my reference point up till now–in the final six-hour stretch I had trudged straight uphill through constant nausea, tortuous cold, and dizzying exhaustion. Perhaps those six hours had been harder than some of what I was going through now. But the thing about that climb was that it had ended after six hours, and by now, I had been enduring frequent pain and exhaustion for weeks. Today I was eating again, so my flare-up had returned in earnest. I spent ten minutes of every hour on the toilet, grunting from the cramping pain in my gut, alarmed by the increasingly liquid material and blood pouring out of me, and all the while still clutching my throbbing face. The combination of flare-up and jaw pain created a constellation of such misery that it might have been laughable, if I wasn’t so miserable.
Monday I somehow dragged myself to the office. I worked through a drowsy, maximum-strength-Tylenol fog. Still dizzy with jaw pain, I contacted the periodontist midday to ask when it would subside. He was concerned. By now, I should not need codeine or even ice–I might have an infection, he said. He usually prescribed antibiotics as a preventative measure, but we had foregone them for fear of further depleting my gut bacteria.
At home after work, I pulled my lower lip down in front of the mirror. My gums were swollen and red, and when I pressed them gently, yellow fluid and a little blood oozed out. I had another fever, too. All of these were signs of infection. I called the periodontist again and desperately described my symptoms. He prescribed the antibiotics. Better to risk wiping out my gut bacteria, we figured, than to let a possible gum infection run rampant.
This decision, too, was a mistake.
Ron picked up the antibiotics within an hour. By nightfall, my pain was easing. Even my colitis seemed to settle down, as though my bowels had been traumatized along with the rest of me. I lay in my evening nest on the couch while Ron cooked for me and brought me ice and meds and water.
That night I slept better than in days. I only needed the toilet once. Tuesday, I felt tired still, but encouraged. In the evening after work, from my couch nest I listened to Hillary Clinton’s acceptance speech–she had just clinched the Democratic nomination, the first woman ever to be nominated for the Presidency. On Facebook, where I had yet to mention my illness at all, I posted instead about her. So this is what it would be like to have a MOTHER figure as President, I wrote. My sister’s girlfriend texted: Did I want to join her for door knocking on behalf of Hillary? I had to decline.
Once again my reprieve was short-lived. That night my bowels picked up where they’d left off; at 3:30 am, after four sessions in the bathroom, I gave up on sleeping and wrote in my journal. In the morning I was two hours late to work, delayed by extra trips to the toilet.
My gum infection had passed, but my fever lingered. Another strange new symptom had arisen as well: a rapid, pounding heartbeat. Even just sitting on the toilet or lying in bed, sometimes my heart drummed at breakneck pace. Its insistent, rapid beat was beginning to frighten me. Could I possibly be in danger of a heart attack? A paramedic had once told me that many people die on the toilet, because when the body is under great stress, the bowels often move. At home, I began leaving the bathroom door unlocked, just in case.
One morning at 4 a.m., I awoke to find the sheets completely soaked with my sweat. Night sweats often dampened my pajamas lately, but this time my pillow, sheets and even blanket were so saturated it felt as though rain had fallen inside the bed. I vaguely remembered rolling over several times in the night, sweat dripping freely down my face, and an accompanying coolness. My fever last night had reached 102.7, but now I no longer felt feverish at all. My fever had broken.
The memory of sweating so profusely in my sleep, and the squishy wetness of everything I touched, felt surreal in the dark. Ron lay breathing evenly beside me. I arose, used the bathroom, changed into dry clothes, then gingerly squished back under the covers. Despite the grossness of the wet bed, I collapsed back into it for a few more hours of sleep.
In the morning I weighed myself: 112.1 lbs. A month earlier I’d been at 122; last night I’d hit 115. Three of my lost pounds had been lost last night to sweat.
I’d been sick for three weeks. I called Dr. L and described everything that was happening; he suggested an appointment asap. He also wanted me to do a C. diff test. Clostridium difficile is a bacterium that can take over the gut and cause dangerous infections. It often lives harmlessly in the guts of healthy people, but if your good bacteria are depleted–by a course of antibiotics, say, or by the ravages of ulcerative colitis–it can proliferate and wreak havoc.
I asked Ron to pick up the test kit for me.
I hurried to work, late again, texting my coworker an apology. She and I were supposed to be prepping for a meeting with biologists from the City of Portland and the Metro regional government. During the meeting, at one point I rushed to the bathroom, interrupting someone to apologize as I stood. When the meeting had ended and the others had left, my coworker looked at me solemnly. “Are you okay? When you had to actually leave the meeting, I realized how serious your illness must have gotten.” I had never been forced to leave a meeting before.
Another weekend arrived. We were scheduled to have dinner with my sister, her girlfriend Anne, and Anne’s parents, the first time we were to meet them. We cancelled. I rested on the couch. Sunday, we awoke to the incomprehensible news that in Orlando the previous night, a man had killed forty-nine people and himself at the Pulse nightclub. Eating breakfast in my nest, I read the reports in tears, feeling distanced and helpless.
Pieces of my life were falling away. They sloughed off, like roof shingles, like rose petals, dropping silently away, away, to be picked up by others. We’d missed the Starlight Parade and the Rose Parade, two Portland traditions I had wanted to show Ron. I cancelled Skype calls with distant friends, dinners with family, afternoon tea dates. I emailed a good friend that she and her fiancé couldn’t stay with us, after all, next week–we couldn’t tend to them. I emailed a local African immigrant group where I’d been volunteering that I could no longer help them with their grant writing. I was slipping out of the world, slipping into my own cocoon, leaving little empty places, little dents and holes, to be filled in by more able-bodied people.
I still somehow managed to work when Monday came again. I dimly sensed myself clinging to routines, moving inexorably forward, like Dad in hospice, determined to get out of bed even when he couldn’t, his glazed eyes staring into the unseen distance, his arms and legs flailing slowly as we gently redirected them towards the bed. I felt that pull to move ever forward and to never, never stop. My status as a working person was the cliff ledge to which I clung. If I stayed home much more, I would run out of sick days, and I wasn’t sure what would happen after that.
Ron had dropped off my stool sample at a lab. I thanked him. I Googled C. diff and learned that it killed 15,000 Americans in 2015. It is deadly largely because it is not always recognized and can be difficult to diagnose, especially if, as in my case, you have another condition with similar symptoms. Like colitis, it causes frequent, watery stools; abdominal cramping; and sometimes fever. It can cause a rapid heart rate. Dr. L was right to test me for it, I murmured to Ron. Maybe C. diff was the answer, the reason my meds weren’t working.
On the toilet, I could feel the life literally draining out of me. I pressed my cool palms to my bare stomach under my shirt, gasping with each wrenching spasm. At home, I allowed myself to breathe out loud with the spasms in audible moans, like a woman giving birth, because it helped with the pain. At work I strove to stay silent.
One day, my task at work was to photograph a stream-restoration project. Giant logs had been anchored at the mouth of our creek to provide shelter and shade for migrating salmon. The salmon live freely for years in the open ocean, then return home, mysteriously drawn back to their natal streams. They move upstream against the current, fighting their way inexorably forward, past the city’s pollution-darkened waters, gasping for breath. They reach our stream and need to pause before the final push. The logs had been anchored for them years before, and shrubs planted along the shore to give them shade. Our grantors needed photos to show the logs still in place and the shrubs still growing.
I needed to drive to the project site with the little red digital camera from our office. I needed to find the places where photos had been taken during the project, and retake photos from those same spots. On the way, I scoped the nearest convenience stores, parks, and businesses for potential public restrooms. Hoping for the best, a wad of toilet paper stuffed in my pocket, I set off down a trail that paralleled the creek.
I had planned for my restroom needs, but had not factored in my exhaustion. That exhaustion was making my mind fuzzy. When I left the trail and began to clamber through brush and over logs, my legs trembled with weakness. I chose each step with great caution. The streambanks were steep and uneven, and below me the creek was a rushing river, its water cold and fast and chocolate-milk brown. I couldn’t see the bottom. It was over my head, six to ten feet deep in some places. Just downstream, the creek emptied into the Willamette River.
There was no one nearby.
My last photo needed to be taken from the mouth of the creek. To descend to the right spot, I had to surmount a massive log that lay at the water’s edge, perpendicular to the flow. When I reached the log, I realized it lay higher than my waist was tall. I heaved a sigh, thinking of the strength it would take to cross it. There was no way around–the uphill end was choked with brush, and below me, beyond the log’s lower end, the river swirled and roiled around submerged boulders.
The river’s noise was a constant, churning din. I lifted one leg over the log, heartbeat pounding in my ears. I gripped crags beneath its mossy, disintegrating surface and smelled its musty, clean scent. I clutched it, laying my body along its length as I pressed myself over, peering over my shoulder to search for more footholds amidst the moss. Just beyond my feet, the river rushed forward. I felt my arms shaking.
Halfway over, the image of myself falling off the log pushed into the forefront of my mind and fear finally, fully registered. If I landed wrong on the bank, I realized, I could topple into the river. My legs could buckle; I could bounce off a tree; I could lose my balance and fall. I could be swept away.
This photo monitoring was part of my job, and I hadn’t wanted to ask coworkers to fill in for me. But in coming here–in failing to ask others for help–I saw now through my fear that I had actually endangered my own life.
With utmost caution, I eased myself the rest of the way over the log and snapped the last photo. I crossed back, greatly relieved when both feet touched ground on the original side, and trudged back uphill to the car, clutching trees, stopping twice to catch my breath. In the driver’s seat, I sat and thought about my situation. Everything passed through my mind behind a sepia-toned haze.
The next morning, I would be due at work early to host a monthly meeting of scientists from various agencies. But in the evening, from my nest on the couch I texted a coworker: Could he get there early and set up for me instead? He readily agreed.
The morning of the meeting, I felt weaker than ever in my life. Clinging to furniture and doorframes for support, I managed to get dressed and made it downstairs, but found myself sitting dazedly on the couch near the front door, unable to put my shoes on. I lifted a leaden hand and mustered the strength to email my boss: I would miss the morning’s science meeting. But, I valiantly added, I would be in later, in the afternoon.
Next I called Mom. I needed to go to a health clinic nearby to get bloodwork done, the latest test ordered by Dr. L. The clinic was five minutes’ drive from my house. I couldn’t get there. Could she come and take me?
She had been following my progress and was very worried. She said yes immediately.
Three hours later, home from the lab, I texted my boss again. I still needed to rest. I couldn’t make the afternoon staff meeting, after all. I would try to come a little later for a couple hours.
Later still, I emailed the whole staff that I would not make it in that day at all.
The next morning, from bed, I emailed everyone that I would be working from home.
I had hit a wall.
My life had ground to a halt.