This time the photograph is of a butterfly. Large, heart-shaped wings spread from one border to another, yellow at the center and flaring out to white, specks of white between chains of black. The butterfly caught in flight somewhere over a field of waving sunflowers in some Midwestern meadow, far from here. The time before in another room the photograph on the wall was of a wheelbarrow, stuck dumb and motionless out behind a rusted shed, in a patch of weeds with gauzy heads, sunken in the mud, so useless to my then sick and tired eyes. And the time before that, the photograph on the wall in my first hospital room was a cherry blossom, spread pink and fawning over a stone bridge and a finger of dark rushing water.
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I was doing good. I almost made it. My CNA class had begun at Clarkson the first week in May. I was excited to be starting school again, taking the first tentative steps toward a career in nursing. But I was also nervous, especially that first day. I tried to do whatever I could to calm the anxiety. The weekend before I went and charged a few new outfits. Had my hair trimmed. And on the day of class I took my time showering, shaving, and getting dressed, making sure to breathe deeply. The drive to campus was direct but leisurely-paced. There was plenty of time. Throughout all of it I reminded myself of that: that there was no rush, that I could relax, there was plenty of time. But despite all of my efforts, it seems around this time, that first week in May, when my colitis began to flare and when I began the slide that has put me in the hospital again, for the third time this year, where nothing is permanent, and familiar faces come and go and sometimes are never seen again, and even the photographs on the walls change when you’re not looking.
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Things became complex, confusing, right away. I met with Dr. Ward at his Lakeside office one sunny afternoon in mid-May. We talked about our plans for treating my colitis flare, only just beginning to get severe by then, and he decided we would increase my Humira shots from bi-monthly, which they had been since I first began injecting myself in February, to once every week, on Monday. I left his office feeling hopeful. “Don’t worry about insurance,” he said, mumbling something about medical necessity and writing a letter to the assholes if the need arose. But still the symptoms of my colitis flare continued. In addition to the usual therapeautic measures of starting a Prednisone taper at 40 mg., easing mesalamine suppositories up my ass every night, and hoping for the best, I also went home with a stool kit and a Hat for the purpose of testing for C. diff.
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I already knew a little about C. diff. The bug’s full name is Clostridium difficile. It is a gastrointestinal bacteria that causes infectious diarrhea and is kind of renown in hospitals and other healthcare environments for being very persistant, hard to beat. It’s not necessarily something a person “gets” more that it’s just part of the normal intestinal environment. It only becomes a problem when it is allowed to flourish and get out of control, like in the body of someone like me — with a constantly, chemically-supresssed immune system. People in healthcare, and those infected, generally always cite the odor as one of the first things you notice about an active infection.
Earlier in the week, when I had been in the middle of my clinical rotation at a veteran’s home as part of my CNA class, C. diff actually came up during our group’s end-of-shift conference discussion. Two of the girls in our group of nine had cared for a resident with C. diff. Being their first experience, they complained and joked about the odor. When my own test came back positive for the infection, I just assumed the peculiar smell I’d been getting whiffs of had been last night’s leftover chicken, or just another wonderful side-effect of Prednisone.
“It’s super hard to treat,” said Brody, another of the nine in our little clinical group, and the only other guy in the class besides myself. “They have to do like an entire poop transfusion.” Brody was a nursing student. When he talked about the treatment for a C. diff infection he made it sound to the rest of us like if you had a runaway case of the infection the only way to get rid of it was to clean all of the brown stuff swishing around in your body with brown stuff that was newer, cleaner, and relatively sterile — and most importantly, not infected with the dreaded C. diff. Brody was kind of the class’s clown. Long, surfer-blonde hair and beard, a muscled, former-Marine’s physique, and very outgoing. A few of the girls in class liked him early on. By the end of our clinical rotation I also had come around and could see he was a good guy. But often we all just laughed and shook our heads at some of the odd things he said, like the C. diff poop transfusion, never completely sure if what he said was accurate, and could be believed.
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Throughout May, Dr. Ward had me stop the Humira pen injections while I continued Prednisone and a two-week course of a powerful antibiotic called Vancomycin. My condition improved and I eventually beat the infection earlier this month, but at times during treatment I strugged to see that I was improving. Despite all my best efforts to keep my weight up — drinking protein shakes after workouts, drinking at least three Ensures a day, and in general stuffing as much high protein, quality food in my gut as possible — I still watched my weight slide from 217 down to what it is currently, 203 — just ten pounds shy of my lightest, and worst, coming out of the hospital back in February. And if I’m honest, and maybe just because I’m vain, and maybe also because I just want to be a big, sturdy-looking, muscly guy again, watching the slow deterioration has been the hardest thing. Most of the loss has been water weight at this point. My arms have thinned out, my shoulders have become knobby and kind of cut up, and at least the muscles in my upper back aren’t so shy anymore, but it’s all a lanky, emaciated look, and I’m just so tired of the sickly appearance, even if at this point it might still be all in my head.
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And so where I am now — not such a surprise maybe, but in the hospital again. Rooming at the always-luxurious Bergan Mercy Medical Center, on the Med/Surg floor where I had spent thirty days back in January and February, and where I first met Misti and a lot of other wonderful people and more or less decided I wanted to be a nurse someday, hanging out with Al the IV pump with a bag of D5 hanging overhead, getting rehydrated and well enough that surgery next month is an option. Because I’ve decided I can’t really do this anymore if I hope to have a normal life and a good career. I can’t allow my colitis to have the influence it has had for the past two years, for the roller coaster of these flares to continue to come and go as they choose, for my weight to slide and my health to fall apart to the extent that I am always starting over, picking up the pieces and rebuilding. So I told Dr. Ward, I want it out. Cut the colon out of me, and if some kind of anastomosis isn’t possible, if an ileoanal pouch isn’t possible then I’m fine with a colostomy bag stuck to the side of my abdomen for the rest of my life. And I have reached the point in the process of this disease that I honestly am. Because the kind of life I have right now, in and out of the hospital, on the toilet between twenty and thirty times a day during the meanest flares, unable to sleep because I’m up five times during the night, is not really a life at all.
