The interesting thing for me is that I am quickly able to become used to this newfound need for toileting assistance. A long time ago, I worked as a Support Worker with a few clients who needed similar assistance, and I understand that on the other end of things, it really is just a job. There is nothing more to it than that. They aren’t looking at me, judging my body, or doing anything else other than pulling down my pants and getting me on and off a toilet. That understanding and background helps a lot. Now having said that, the process isn’t without its kinks and uncomfortable moments.
Okay, now it is time for a bit of a warning. I will talk openly about anything. I am used to being sick and having health problems and often those problems involve my uterus and my “lady bits,” as I call it. For years I have had heavy periods and uncontrolled bleeding that no amount of synthetic progesterone can suppress. As such, I deal with having my period as often as my body desires, and it means that I have it for the majority of my hospital stay. I can honestly say that having someone help me with my pad is on that list of things that I absolutely never want anyone to help me with, ever.
For some reason, menstrual blood is more personal to me than any other of the bodily excretions, and I am determined to figure out how to ensure privacy in these acts. I am happy to talk about it with the nurses and let them know how heavy the bleeding is, but I am totally not about to let them see anything. I figure out early on how to get the pad out of my underwear and dispose of it with my limited function. However, I can never figure out how to put a new one in and manipulate the little wing thingies with an elbow. As such I have to let the nurses put the new one into my underwear. Two nurses take this duty one step farther and decide that as they put my underwear, with the pad in it, back onto me they would hold the pad in place and then check to make sure it doesn’t slide once my underwear was on. Sometimes this is by visual inspection, while other times they gently pat the pad from the outside to make sure it hasn’t slipped.
Female nurses just ensuring my hygiene and comfort is far from sexual assault, but it feels like a massive violation to me every time. They never ask first and they just go ahead and stick their hand on my “lady bits.” It is the younger nurses who are more apt to do this too, and I find myself shouting “PLEASE-JUST-LEAVE-THE-PAD-I-WILL-DEAL-WITH-IT-MYSELF-WHEN-I-AM-BACK-IN-BED!” as fast as I possibly can in an attempt to avoid them groping me. Most of the nurses leap back and stare at me wide eyed, not sure what I’m talking about. Some raise their hands in the air and look quizzically at me, clearly thinking “what on earth is wrong with this girl!” but I do what I need to do to keep my “lady bits” literally out of their hands.
I also have a very reactive bladder and if I cannot relax, I cannot go. Beyond that I am dealing with some medication side effects the entire time that only intensify this urinary retention. It can take me up to 10 minutes sitting on the toilet to start stream. I try everything from putting my hand under running water, to trying different positions for my legs, to intensely visualizing the urination process — “Okay, so now the urine is slowly coming down my urethra and the sphincters are loosening and I am going to pee any second. I know it! Come on! PEE!” and occasionally I give myself these pep talks out loud. I am not entirely sure why I do that, since I am Deaf, but sometimes it maybe sort of works?
Knowing that there is a nurse waiting for me only increases the anxiety and the pressure on my bladder’s performance only mounts. Nurses begin to wonder and get worried, so they just come into the room and ask me if I am all right. Without warning the door will swing open and things like “oh good! You didn’t fall. Are you having a bowel movement?” are said loud enough that passers-by can hear. It interrupts whatever urination ritual I’m working through and I then spend longer sitting there trying to relieve myself. This complete loss of privacy is extremely challenging for me. I want to start shouting “no means no!” or “Whose body? My body! Whose pee? My pee!” at them in true activist style, but I feel like this will not be received well.
The nurses also always want to know about my bodily fluids in great detail. I require prompts for maybe the first few trips but from then on in I just spout out the usual. “I peed and had a bowel movement. My urine was light yellow, not cloudy. No strong odor and seemed average. No pain or burning coming out but I feel like I may have some retention. The stool was loose. There was red blood in the bowl and on the paper. Mucous too. And yes – there is still vaginal bleeding with no apparent clots. It is medium red and looks like menstrual blood.” Normally they ask if I would consider letting them see the bowel movement next time, and without fail the answer is no. I am not interested in playing show and tell because they have some interest in the reality that my colon and rectum are constantly bleeding as a result of Behcet’s disease. I can self-report and maintain some dignity. It seems that my years of changing diapers for older youth clients of mine, and having no issue with doing it, do not rub off on me in such a way that make sharing the contents of the toilet bowl any more okay.
The process of the personal becoming public can be a challenging one, especially when it goes beyond simply speaking about it. Anyone who knows me will say that I have no issue talking about any bodily function. It goes along with having gastrointestinal disease and being sick/disabled. Bodily processes are normalized for me and it all just is what it is, but the act of actually sharing those experiences in real life and real time with another human still causes me to feel a sense of shame. We are taught that these parts of our bodies and existence are private and for us and only us.
That rule doesn’t apply to all bodies and all realities, though, and sometimes those parts need to be shared with others. Very few of us possess a schema for that possible reality, and yet almost every single one of us will experience it at some point in our lives. We are never prepared for it, or warned that we have it coming. There is no process in place for adjusting to it when the time comes either. Just a nurse who tells you “we do this every day, it is perfectly normal,” and a feeling of dread in your gut.
[Part 5 will follow next week.]
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/