You could hear the disapproval in Nurse Geri’s voice this morning when you called to report your symptoms. She had wanted to know how many tablets of azathioprine you were on now, and she asked this question by repeating the most recent notes in your patient file. “Back in August it looks like you were stepped down from five tablets to four. Is that right—are you still taking four?”
You told Nurse Geri no, that when you first began bleeding, way back on the first of November, you upped the dose and began taking five pills again. There was a pause of a couple seconds. “You really should have called before doing that.” The good people at Omaha Gastroenterology Consultants have had you on an immunosuppressant for two years now, exactly one year longer than they said when you first began treatment. Only recently had they told you it was okay to step down from five tablets to four. There were many things you could have said to Nurse Geri in response, like the creeping unease it’s you in charge of your own healthcare despite being the most unqualified. They want blood draws every three months, but if you don’t call and set them up yourself, if it just happens to slip your mind because you’re in your early thirties and on some deep personal level still not ready to accept that you are a chronically ill person, the appointments would never be scheduled. And the impression you have is that if you hadn’t called months ago and asked to begin stepping down from five tablets to four, you’d still be on the full dose of azathioprine and silently wondering how long before they surprised you with a diagnosis of lymphoma.
And when Nurse Geri asked how many Colazal you were on and you said three, again there was a pause on the other end of the line, the soft static of silence massaging your ear, followed by a disgusted sound Nurse Geri made with her lips. You pictured those lips in your mind all of a sudden, an extreme close-up in which they ceased to be anatomical features but some sort of landscape abstracted from the whole, red pursed hills sloping down toward a whistling gap, the furrowed skin along the edges, lines pulling away in all directions like long dry riverbeds.
You had to say something. “I’m just trying to do the best I can over here.”
“None of this is cheap.”
You were taking three because for a while you felt pretty good. You didn’t think you needed to be taking nine Colazal a day. Nurse Geri wanted to know how long you had been fucking up your doses, asking in the friendliest way possible. Then she suggested maybe you earned the flare, again in the nicest way possible. Maybe it finally caught up with you, she said. When you repeated all of this to CF later in the day, she mumbled something about non-compliance. She’s a nurse like Nurse Geri, she has insider knowledge. When you don’t take your meds the way you’re supposed to, explained CF, that’s what they put in your file. You imagined one of the nurses at Omaha Gastroenterology Consultants opening your file to the demographics page and stamping a large red [NON-COMPLIANT] in the upper right corner.
Nurse Geri wanted to start you on prednisone but you told her no. You wanted to try and get over this flare without the help of steroids. Two years ago when the condition and the medications prescribed to fight the condition were new and you were still learning, you had asked many questions to many of your new healthcare friends and gotten the impression steroids were last-ditch efforts, a Hail Mary pass to win the game. They were safe-enough to use.
Later that day you found yourself with CF in her living room, in the sofa chair slouched almost horizontal with your feet propped on the coffee-table, staring at the point above the front door where two walls and the ceiling intersect, your head and heart both soggy, useless machines by then, clogged with all the things you weren’t telling anyone. The shiba was poised on the middle couch cushion, so motionless he appeared stuffed, staring with ravenous interest as CF spooned chili into her mouth from a foggy Tupperware bowl and watched Brian Williams on TV. You were part of this domestic scene but only in a way that seemed accidental. You wanted to bawl inconsolably but your eyes weren’t cooperating. Instead, you continued to stare at the ceiling, a zombie, breathing through your mouth because your sinuses have been congested since childhood and it’s just easier that way. Finally CF put the spoon down and asked how you were feeling. The shiba tracked the empty bowl as it moved out of reach to the center of the table. He licked his lips, whined softly.
Your sessions with Doctor K begin with the same sort of questions, but lately your visits have tapered off to once a month, so maybe Therapist is CF’s other job now, the role you have cast her in. You shook your head at her question, quietly mulling over the various responses. Then it occurred to you it didn’t matter how you responded because the conversation is mostly the same anyway: You try to communicate the reach of your mental anguish, sometimes raising your voice above hers; CF watches with round, sympathetic eyes, shakes her head, tries to console with the meager advice and life lessons at her disposal. This time you began by mumbling. CF pulled herself away from the news long enough to glance at you, confused. “I can’t hear when you mumble,” she said. The shiba jumped off the couch and wandered toward his water bowl in the kitchen.
“I feel lost,” you repeated.
There were many reasons why, you told CF, but when you grappled for specifics there weren’t any. Everything was the only specific thing, because of everything you felt lost. Twenty minutes passed with all the familiar concerns laid out, CF uttering the same refrain: I don’t know how to help you, Jon. I don’t know what to say anymore. It wasn’t that she didn’t want to help, she had just exhausted things to say. She understands your pain, the at times crippling depression, the chronic jaw pain, as well as your current situation, mid-colitis flare, the condition that has you bleeding from the ass five to ten times before it’s even lunch time, fifteen to twenty on the bad days. She sympathizes, makes you feel good about your pain tolerance when describing it as Herculean. I don’t know how you do it, she sometimes admits, her exasperation suddenly coming through, but I am glad, I am in awe that you continue to fight every day. Hearing that, you’d wonder if fight was really the best way of describing it, if cope was a better word for what you were doing, what your life had become in the wake of doctor’s appointments and diagnoses and blood draws and the mid-morning ritual of a psyllium fiber drink coupled with a pale array of prescription pills. Were you really fighting or just practicing unseeing techniques when months dropped off the calendar and the house fell into disarray? What word best describes the trash collecting into shaky mountainous heaps beside an already full trashcan, or the stacks of dirty dishes, the fact that only the same fork, plate, and pan get washed when the cupboards are finally empty, how you go on so long this way that fuzzy life forms begin to freckle the bottoms of spoons, bowls? Are you a fighter the hours you spend on Doctor K’s leather couch, in his sunny office on Chicago street, while the ruins of your entire life smolder half a city away?
Maybe your tolerance isn’t just for pain, but compliments too. Hearing the same old same old from CF while you both lazed in front of the news didn’t seem to have much effect this time. Your eyes still weren’t cooperating, but you could feel yourself getting closer. You just wanted her to know how bad the pain was today, how bad it had become the past few days, that you were worried. She was quiet and you were quiet and the TV murmured softly between you. Everything was still the problem, and the words you had to express the full extent of your pain were suddenly inadequate, you could think of nothing better than to repeat yourself. You looked CF in the eye and shrugged.
“I’m worried,” you said, pouring everything into those words, hoping they could carry the weight. “I. am. worried.”
The next day it rained steadily, madly, all morning afternoon and evening. By the end the trees were black and the ground was sewn with soggy maple leaves. Your car was covered two inches deep in places, a strangely foreboding sight, a prelude to a month from now when snow will rest, frozen and glittering, on your car in much the same way. You spent the entire day inside, a hermit, looking on from the window, comfortably gray, thinking about many things—the yard work yet to be done, the blank sunless sky bowled overhead, the fallen temperatures—reminding yourself of a line that comes every year about this time, one good rain and they all fall down, then moving on to yesterday, Nurse Geri’s disapproval, your visit with CF.
You had survived another night. You curled up on the couch for several hours and read pages from a memoir between commercial breaks, then went to bed early. Your eyes were used to cooperating by then, the lids eagerly lying down over your vision as they had done the day before, when the light became wet octagons and CF watched you cry into your hands.