ICD-9-CM Diagnosis Code 556: ULCERATIVE COLITIS
(More pics here)
“I’ve heard this is an incredibly painful disease–is that true?” It’s funny the things people ask you when you’re lying in an ER bed, heart monitor wires crawling out from beneath a hastily thrown-on hospital gown, fluids and a steamrolling steroid drip being fed into weak veins, a second IV line put in right after the first, and a blood transfusion bracelet “just in case.” Who said this to me? I think it was the woman from registration, a process I bypassed.
When I was hospitalized earlier in the summer, somewhere in those 10 days I decided to move back home to Pittsburgh for exactly this reason, this particular scenario playing out differently in its criticalness, but affirming that I had the correct logic: I’m not getting better. I’m probably not going to get “better.” I can’t do this again in New York. I can’t do this without being able to hold mom’s hand. I know I’m going to have to do this again.
There I was, doing this again. But in Pittsburgh.
It has been…I don’t know…a hell of a summer? Arriving here in a feeble state, physically and mentally, I threw myself into everything Pittsburgh had to offer, writing down lists of restaurants to patronize and actually going to many, joining the Steel Town Etsy Street Team and Pittsburgh Craft Collective, subscribing to area magazines I could potentially write for. Absorbing. Relying on a reserve of energy I didn’t have. Going forward instead armed with “mind over matter,” ignoring the quotidian pain, fatigue and unpleasantness because not one day is “good,” not one night slept through without marching off to the bathroom at least once or being jolted awake by insomnia. You have to think it’s all “normal,” otherwise it would become impossible to face. For everyone, but most importantly for me, it’s a lie, it’s a show, it’s trickery and it’s absolutely necessary if I don’t want to spend the day crying in bed. But when I look at what I’ve done, where I’ve been to in Pittsburgh, what I’ve seen, what I’ve created, it’s almost irritating to think about. That so much good could be interspersed with so much bad, that I had to experience all of these wonderful things while encapsulated in this sick little body.
I read Rollo May’s The Courage to Create: “Courage is not the absence of despair; it is rather, the capacity to move ahead in spite of despair. Creativity arises out of the tension between spontaneity and limitations.” Good, because, at times I feel paralyzed by despair and limitations. I plow through The Wounded Storyteller: Body, Illness, and Ethics, determined to make myself stronger in the head about it all, determined to be a wounded but “good” storyteller. Feverishly underlining quotes:
The ill person who turns illness into story transforms fate into experience.
Ill people have to learn to think differently.
One of our most difficult duties as human beings is to listen to the voices of those who suffer. These voices bespeak conditions of embodiment that most of us would rather forget our own vulnerability to.
What is harder to hear in the story is the body creating the person.
Chronic illness in particular challenges us to ask if it it possible to be successfully ill. A good story is the measure of an ill person’s success.
Modernity has a hard time accepting, even provisionally, that life sometimes is horrible.
I would never have chosen to be taught this way but I like the changes in me.
Quest stories meet suffering head on, they accept illness and seek to use it. Something is to be gained through the experience.
I agree! And I want a quest story as opposed to the alternative, the chaos narrative. I want to meet it all head on and face it and use it. I want to somehow be at peace with the fact that illness has changed me to the core, taking away my spontaneity, taking away my favorite foods, taking away my teaching career. It has made me say “no, I don’t like that” where I used to say, “yes, I do like that.” The hospital is the ultimate experiencing of that. All decisions are made for me, by my icky body and by medical professionals. I have no choices except choosing menu items when I’m allowed to eat again. Everything is done to me, the body creating the person. A person I do not want to be. But it has given me other things, hasn’t it? I would never have chosen to be taught this way… On the other hand, I just want permission to give up because I don’t see how I could ever be at peace with such losses. I bounce back and forth between these two extremes, the energizing feel of optimism, the pummeled feel of defeat.
In August, I could feel the tolerably bad state of my health becoming less tolerable. But I was still arduously getting medical paperwork and tests done before starting new treatment options, in a state of limbo that I feared would lead to the hospital on a daily basis. A ticking time bomb. I always think I have reached my pain threshold, that my body cannot possibly survive this, that it can’t possibly get worse. But then it does. Then it did.
I must have run to the bathroom 20 times in a few hours, a gruesome experience I am no stranger to. So much pain that reverberates throughout my entire body, my joints and muscles…screaming? I throw up a ton of water, getting dizzy, seeing stars when I try to get up, my legs buckling. Mom, something is really wrong. I can’t walk anymore, I can barely stand up.
Parents hunched over me, I lie there on the floor, screaming and crying: Everything hurts. I can’t breathe. I can’t breathe! I am terrified but I am so blitzed out and incoherent from body meltdown and debilitating pain at this point that I cannot think about the option of going to the hospital. I have no concept of “a hospital,” my mind is going. I want to take a hot bath, still holding onto the possibility that I can get through this. But I can’t stand up long enough, can’t lift my legs enough to get in. It’s over. I am in low blood pressure danger zone from severe disease activity and dehydration. I am fading and I can feel it, even though I can’t think it. I actually feel a dark cloud behind my eyes, something enshrouding me. Mom, I’m gonna black out.
My dad practically carries me to the car. Mom, do you know what to say when I get there? Because by the time we get there…tell me my symptoms, what has been happening. She goes down the list. I look out the window and don’t understand what any of this is. When we get to the emergency room, all I want to do is lie down on the floor. I sit in a chair but I can’t hold my head up. I am eventually put in a wheelchair, where I kind of just slump over. At first there is no blood pressure reading. And then a really low one. A patient ahead of me gets kicked out.
Allergies? Morphine. And hyacinth bulbs. I never say the latter because it’s irrelevant in a hospital setting, but later when I can think again, it makes me laugh inside, this stark contrast between these two things. It would make a good name for a poem. “Morphine and Hyacinth Bulbs.” So much blood-taking. I’m gonna black out. Take deep breaths. You’re gonna drink this and it’s gonna taste like this and it may make you nauseous. A CAT scan cocktail. Being wheeled around on a bed, the proverbial you’re-too-young-to-be-this-sick comment. Every time.
The ICU. My first time. Completely attached to wires and tubes that cannot be unplugged from the wall. My legs and arms don’t work anyway. A heart rate that goes from 90 to 125 when I try to stand up, sounding off an alarm. A nurse who laughs as much as me, donning her Steelers shirt because it’s game night. Steelers-game-watching in the ICU. Just what my heart needs. My PCP. The pulmonary doctor. The heart doctor. All of them: “Your blood pressure, when you came in here…” I know. I have always been frightened when doctors trail off, don’t finish sentences. A series of ellipses that speaks louder than any definitive words ever could. We’re going to keep you in here because…
In a regular room: “Are you writing?,” he asks me over the phone. “No.” I am too angry to care about “the story,” about using the experience. I scream and cry on the phone that I’m so sick of all of it, of everyone wanting me to persevere, that it’s somehow inspirational, that I’m going to beat it, that everyone is depending on me. I don’t care I don’t care I don’t care. It makes me angry because it makes it impossible to give up when it all seems to be about everyone else, and not about me. About what they want, not what I want. They all say that they can’t bear it. What about me? No, I am not writing. I am so sick of writing about all of this. So sick of these posts. But inclined to write them because it doesn’t feel like enough to merely say, “This is all so hard. So hard. So painful. And I am so sad inside and don’t know what to do.”
I lose myself in television instead, in Hart Crane poetry and Sylvia Plath journals if I can stay awake. I write only three sentences while in the hospital: Can a spirit be chipped away at? If so, mine is. Goal is one day to be able to pick up pieces and either put them back together or make something new with them.
I balled my eyes out for hours and hours when I find out that the biologic treatments via injections I have to undergo indefinitely upon getting discharged will not be covered by insurance and they cost an arm and a leg. Parents aggressively begin get-patient-assistance process as I bury myself in pillows, crying until my eyes are swollen shut and I can’t breathe. I look at my computer for the first time in days and notice that the Halloween craft book I co-edited/contributed to is “in stock” instead of in “pre-order” mode. I curse, remembering that all summer I said to myself, “I was in the hospital when I became a contest semi-finalist. I do not want to be in a goddamn hospital when the book comes out.” No no no! Not when I should be writing my author profile and contacting magazines and planning bookstore events and yarn shop classes. Instead of watching strands of yarn being manipulated by my hands I am watching burning liquids being sucked into them. I look at the cover of the book, my red glittery Dorothy shoes, my little feet. There’s no place like home. Of course this is happening. Of course I am in the hospital when the book comes out. And the one outstanding Etsy order I had to cancel? A peach. Of course.
When I got home from the hospital on day 7, I promised myself that I would finally design my crochet colon, one afflicted with ulcerative colitis of course, red bands encircling tissue, a frown, the title of which would be the arbitrary but official medical diagnosis code that will forever be stamped on my medical documents. Crocheted, personified ulcerative colitis. It simplifies (too much?) the last 5+ years: girl gets disease, girl picks up crochet, girl’s life changes significantly on account of both.
But what could possibly represent the experience of waking up every single day and feeling either a little bit sick, a lot sick, or somewhere in between? How many crocheted colons would I have to make to express the amount of cramps and joint achiness and heart palpitations and unpleasantness and migraines and blood loss and embarrassment and muscle atrophy and side effects and loss of dignity and vitamin deficiency and tears and raging insomnia? How many to represent that I have slept 2-4 hours of choppy sleep a night for over a month now, that I haven’t been able to eat breakfast in the kitchen because it is too far from the bathroom, that I often have heartburn that lasts all day, that I wait to cry until I’m in the shower because it feels less like I’m crying in there, that it took me over a week to be able to walk up one flight of stairs without stopping? Not enough. But making just this one, that I will put in the Plush You! show in Seattle this fall is enough, I guess. A city I first got to visit because I got sick, I crocheted, I wrote. An artistic representation of a diagnosis that has brought so much good and so much bad to my life.
Is it an incredibly painful disease? It is. Is it possible to be successfully ill? I hope so.