KM

In my early childhood, I often found myself in hospitals starting from the age of two. I got sick one day, and my mother knew something was seriously wrong when I had a fever of around 104 degrees fahrenheit. She brought me to the doctor, and they brushed it off as just being the flu or some other common illness. She managed to convince the doctor to test my urine, and it came back that I had a severe UTI. This ended up being the first of many. While it’s not unusual for potty-training girls to be diagnosed with these, the rate at which I was getting them was concerning to my family. The first thing I remember related to my condition was going to the doctors office with my mom and being taught to pee in a cup. The first solution my family tried was just to teach me how to properly use the toilet, and that had little effect. After my sister was born, she also struggled with frequent UTI’s, except hers started from a much younger age. We both took medication before bed every night - a pink liquid designed to prevent UTIs. At the time, I didn’t know why I had to take it, but I did every night without complaint. My parents were starting to get concerned about how many UTI’s we were getting, even after teaching us the correct way to wipe. They eventually took my sister and I to get ultrasounds done to figure out what was going on. My mom tried to explain my condition to me, but from everything she said, I only understood that I peed backwards. When writing this essay, I had to ask my mom what the name of my condition was, and then do a Google search for the term to confirm that I described it correctly. I was diagnosed with bilateral urinary reflux - a condition where urine flows backwards into both ureters and both kidneys. I learned that it can lead to more serious conditions like kidney infections, and if left untreated can lead to permanent kidney scarring, or even death, which is what made it so severe of an issue. I did not understand this when I was a child. One day, my parents told me that we had to go to the hospital to do a “pee test”. I have no memory of the drive there, and upon writing my first draft of this paragraph, I thought I had no memory of the test itself. While writing, I discovered that I remembered more about the test than I thought. With vivid clarity, I remember standing in front of a hospital bed, my body adorned in a paper gown and my mother standing behind me to preserve my modesty. They were going to explain the test to me so that I knew what was happening - so that I wouldn’t be scared. A teddy bear sat innocently at the pillow of the bed, its brown fur matted from the hands of hundreds of unfortunate children it’s seen before. It looked like any other teddy bear - beady black eyes, fluffy ears, furry paws - except for the hole between its legs. Made from a small plastic tube, no thicker than the end of a pencil, the hole was built into the fabric of its fur and went into the stuffing. I never wanted to be further away from a stuffed animal in my life. The doctor picked up the bear, then another plastic tube - its diameter slightly smaller than the hole on the bear. She laid the bear flat on the hospital bed, its beady black eyes staring lifelessly into the fluorescent lights above. I quickly put the pieces together and figured out exactly where the doctor was going to put the tube. My view of the situation was crystal clear; the fluorescent lights provided me an unobscured view of the brutal display. The doctor brought the tube to the hole of the bear, and I stared aghast as she pushed it in. And as is the curse of empathy, I imagined exactly what it must feel like to be that poor bear. The doctor reassured me that it wasn’t painful - that it was a short procedure and would be over very quickly, if a little uncomfortable. It was then that I remembered what we were doing there. They were describing a test. A test that needed to be performed on me. I suddenly had a vision of myself in the position of the teddy bear - lying prone and vulnerable in a sterile white room, while unfamiliar hands poked, prodded, and shoved at places I was always taught were private. I turned to my mom, clinging on to the rough fabric of her jeans. “I don’t want to do it”. I pleaded, the six words dripping with more dread than I had ever experienced in my three years of life. The chill of the hospital air through the open back of my gown set into my bones. I looked up at my mom, begging silently for her to change her mind, to say “It’s okay, baby, let’s just go home.” Alas, my fate had been sealed the second we stepped through the hospital doors. “I’m sorry baby,” She caressed my hair, an action I would have taken comfort from in any other environment, “but you have to.” The time between the teddy bear demonstration and getting to the testing room was a blur - the anticipation of what was going to happen lurked in my brain like a shadow. Next thing I knew, I was in a different room with multiple doctors, and my parents had disappeared. I don’t remember how it happened, but next thing I knew I was on the operating table, my legs spread out in the butterfly position. I can’t remember if I positioned myself that way voluntarily, or if they forced me. All I knew was I wanted to get out. My parents were gone, outside somewhere, watching through the glass. I couldn't even see what was happening to me because the x-ray machine was blocking my view. I had no way to prepare for whatever would happen next. And I was alone. I stared at the ceiling with wide eyes, paralyzed with fear and most likely crying, and I no longer needed my imagination to tell me what it was like to be that teddy bear. After it was over, I was allowed to pick a toy from the hospital’s donations. I looked around the tiny closet feeling like a shell of myself. Even the prospect of new toys couldn’t spark a positive emotion. There weren’t any barbie dolls, so I chose a game of Topple and moved on. I don’t remember what my parents were doing at this time. The fountain outside the hospital was a welcome sight. It was like a statue of honor, saying “you’re free. The worst is over, and you’re free.” I had unspeakable things done to me, but I survived. I could forget about it. It was done. Until I ended up at the hospital again, months or years later, for the same test. My parents tried distracting me with the giant chessboard in the lobby, but it was no use. I knew it was happening again, and I was not going to sit quietly. I think I fought that time - yelled and screamed and kicked and did anything to get away, but all to no avail. I ended up back in the room. Then we went to the hospital a third time. Since fighting didn’t work, I tried pretending to be asleep, to see if my parents would drive back home if I wasn’t awake. Instead, my dad carried me in through the hospital doors, saying how maybe it would be better if I was asleep. I remember cracking my eyes open and seeing the giant chessboard, a monument to my defeat. I don’t remember the fourth test, but my parents have told me there were only four. My sister needed these tests as well. She was no older than three for most of them, and on days where we went to the hospital for her tests instead of mine, I felt guilty about being relieved that it wasn’t me this time. She was my baby sister. I was supposed to look out for her and keep her safe. Yet there I was, unable to save even myself, staying silent because it wasn’t my turn. I was safe, this one time. I was never there for her tests, or if I was, I don’t remember anything. In 2012, about four years after my first test, my parents explained that my sister and I need to have a surgery done. They said that we pee backwards right now, but this surgery will fix it so that the pee doesn’t go backwards anymore. I don’t remember my initial reaction, but when my mom told me that after the surgery, I’d never have to do those tests again, I couldn’t wait for the day of my surgery to get here. To think that the horrors of the tests were so severe, that a six year old looked with excitement at the prospect of surgery rather than fear. I’ve shared my experiences with my mother, and she informed me a few moments of my story were factually incorrect. First, the doctor that demonstrated the test on the teddy bear was not a doctor. She was instead a child life specialist whose job was to make me comfortable. I wonder how she would feel, knowing that the demonstration intended to educate and comfort me instead felt like an interrogation - a threat of all the torturous things they would do to me. Except in an interrogation, there is a way to avoid the torture by talking. My suffering was as inevitable as being tied to the tracks as a train barrels towards me. There was nothing I could have done to escape my fate, and struggling would be a fruitless effort. Secondly, my mother carefully informed me that I was not alone in the exam room. Both her and my dad were in the room the whole time, holding my hands, petting my hair, doing whatever they could to comfort me. The fact that I don’t remember them being there was a testament to how alone I felt. Fortunately, I do not have any hatred towards my parents for putting me through this procedure. From the experiences I have read from others online, that is not the case for many. Both my parents have apologized. Assured me that they never wanted this to happen. I don’t blame them. The doctors did not give them the option of anesthesia, and when my mom asked, she was discouraged. Five years later, I felt uncomfortable when my little cousin hugged me, because he was only as tall as my hips, and I hated having people near there. Even the innocent hug from a one year old child put me right back in that white room. I cried to my mom about how I felt, and she suggested seeing a therapist. I declined, because I couldn't fathom talking to anybody about what I went through. Ten years later in yoga class, I left the room under the excuse of needing a drink of water to avoid doing the butterfly pose. Fifteen years later, and while the test may be over, I feel the same amount of dread, discomfort, and urge to get out of my skin writing this as I did laying on that hospital bed. Fifteen years later and I am immeasurably grateful that my little sister doesn’t remember the tests. Fifteen years later, and I still do not fully accept the necessity of the tests, which I learned are called VCUGs. My mom has tried to explain: “Usually kids with this condition grow out of it, and we didn’t want to put you through an unnecessary surgery.” But I just silently seethe on behalf of that little girl who couldn’t save herself. Why couldn’t they have just done the surgery first? Why didn’t they try other options? According to Google, doctors can offer children a sedative. Why didn’t I get that? I’ve asked my mom all these questions before, and the answers are the same every time, yet they never satisfy me. There must have been another way - a way that didn’t leave me uncomfortable in my skin a decade and a half after the incident - a way that didn’t leave me with underlying anxiety issues. To this day, I am uncomfortable with anyone being anywhere near my privates. I am not exaggerating when I say I would rather risk having cancer than visit a gynecologist. I now identify as asexual, and I find myself regularly debating if I would still be asexual were it not for this procedure. Regardless of the “what-ifs” presented as I consider my backstory, I have finally reached a space where I am comfortable talking about what happened to me and ready to share the truth about the VCUG. The experiences of my past have shaped who I am today, and despite how I wish it didn’t happen, I have learned to accept it and am continuing to adapt my life as necessary. I will, however, never allow the truth about the VCUG to go unheard. Every anxious parent needs to know the consequences of this procedure, and I hope one day the VCUG is retired for good.