by Jenny Blaser
As I settle in to 1217A, I find myself alone for the first time. I am without a friend or support person and it is just me and Penny. The nurse, Kelly, is familiar to me from my previous admission to the unit and remembers the things I need. We get me into the bed and Penny joins me, taking up residence at the opposite end. I know what is coming next and it is no surprise when Kelly wheels in the machine they use to check my vitals. I think to myself: “Here we go. The first of my twice daily mandatory assessments,” as she places the blood pressure cuff around my arm, the pulse oximeter onto my finger, and the thermometer under my tongue. She waits for all the machines to beep and then records my blood pressure: 102/68; my heart rate: 82; my blood oxygen saturation: 98%; and my temperature: 36.3 degrees. This proves I am alive and not too close to death at this point, which in my books is always a good sign.
Kelly then approaches me with her stethoscope, instructing me to breathe. I breathe in and out and look around the small semi-private room. I am reminded of the last time I was here, in the exact same bed, in July of 2012. That time, I was here for an inpatient colonoscopy, and I am left wondering which experience is actually more desirable: a doctor exploring my bowels, while awake, with a camera that is inserted through my rectum? Or complete loss of muscle control over more or less my entire body? It is a tough question, and one that I am not sure I can answer.
Apparently, all is well, because she soon changes to my gut and listens to my bowel sounds to make sure things are moving. “When was your last bowel movement?” Kelly asks, while palpating my stomach. “Uhh … yesterday?” I reply, suddenly remembering the joys of being admitted to hospital and having to report every bodily function or risk accidental laxative overdose when they assume you are constipated beyond belief.
“Do you need anything else?” Kelly asks before she is about to leave. “I need to go to the bathroom …” I say with apprehension. I have had to go for quite a while, but I have been holding it as long as I could. Maybe, just maybe, the spasms would stop before it became a matter of desperation. Kelly begins to negotiate what going to the bathroom would look like. I am pretty clear that it should look like me sitting on a toilet, and I am luckily able to convince her of the same. While there are many alternatives, the main one in question is a commode chair. It looks kind of like a portable toilet on wheels, with a removable basin to collect the waste. It is wheeled to the patient’s bedside and the toileting process happens there. While I have nothing against the use of such things when necessary, I am pretty sure we are not at that point.
Together, we get me back into my wheelchair. I am perched precariously and the spasms threaten to send me flying out of it in a fabulous acrobatic feat at any moment. Kelly has one hand on my push handle and the other around me in an attempt to keep me in. I am uncomfortable with this, but I know this nurse and I know that she isn’t one to care much about my comfort when safety is implicated. I hold in my protest, knowing it is futile.
We arrive at the washroom, and together, we move my hands over to the grab bars on the wall. I do my best to hold onto them and slowly rise to my feet, supporting most of my weight with my spasming arms. Kelly has one arm around my lower back, grasping my shirt on the other side to stabilize me. With the other hand she grasps the waist band on my pants and my underwear and pulls them down. Together we lower my body onto the toilet. I look up at her, naked from the waist down, and she looks back at me. “Please leave?” I half order and half ask. “Pull the call bell when you are done – do not try to get up on your own,” she says before slipping out the door.
My poor reactive bladder takes what feels like years to relax and finally relieve itself. With shaky, spasming arms and hands I manage to get some toilet paper and wipe myself before pressing the call button to summon Kelly. She reappears quickly and I suspect she has been sitting outside the door the entire time. “Do you need me to wipe you?” she asks, going for the toilet paper.
“NO!” I snap back.
“Are you sure?” she says, looking at me with a face that says give up, but I hold my ground.
We repeat the process of getting me to the toilet in reverse this time. As Kelly pulls up my pants, I glance up at the ceiling, perhaps searching for God, and praying that this will not last long.
This is only the beginning of me submitting to nurses and their will when it comes to my toileting needs. What was once a personal event becomes public. With each new nurse I find myself going through the same negotiations. It is not long before I figure out which nurses are nervous and which nurses are confident that as a 23-year-old, who was disabled before this whole methotrexate ordeal, I know what I am doing and what my limits are. I come to cling to those nurses and rejoice when they come on shift, because the independence they afford me extend well beyond the confines of the washroom.
[Part 4 will follow next Wednesday.]
Jenny Blaser is a young, Deaf and Disabled Queer who loves all things pink and butterflies. She is a chronic story teller who uses narrative as an act of resistance and reclamation of identity and experience. To learn more or to reach Jenny, check out http://fiestydeafanddisabled.wordpress.com/