KIM
An Unsilenced Survivor Story
"The unexpected pain that pierced my urethra caused my whole body to jerk, and I could no longer remain the calm, composed, and obedient child I had been only moments ago. Instantly, I started crying and screaming from the pain as I kicked and squirmed trying to escape whatever was happening to me. The distraught look on [my mom's] face only made me fight harder, as it was clear that she was shocked by what they were trying to do, too."
As someone who enjoys writing as a passionate hobby, never in my life have the words been so fragmented and difficult to record on a page until now. Typing a line, pressing the backspace key, and typing again as I struggle to find the appropriate words to capture the terror and lasting damage that occurred such a long time ago. As I sit here and write, the words "get over it already” and “move on with your life” echo in my brain harshly, trying to hush me into silence once again.
I have been silent, however, for too many years, glossing over my story in brief notes to doctors or therapists as if it was something to be ashamed of, something that was somehow my fault. Even the five-sentence summary of my story was often met with misunderstanding or ridicule. There is also a lingering fear in the background, causing me to worry that my words of truth will once again unlock the floodgates of images and emotions that I have so carefully managed to store away somewhere over the course of the last 30-some years.
Whatever happens, I am ready, ready to face the demons in the dark since now I know that I am not alone.
I was a happy child, articulate and full of joy and love for the world. It was in 1991 however that my view of the world was permanently broken when I had to undergo a VCUG. The day that it happened started off like any other morning for my three, almost four-year-old self. I woke up to the smell of pancakes that my dad had so skillfully cooked and happily ate them while watching cartoons on a big box TV. After breakfast, my mom took me to my room to dress me the way she normally did each day. I noticed immediately that the clothes were much fancier than what I would normally wear, a silky pink shirt with lace around the collar and matching shorts (to this day I can’t stand the feeling of silk). I traced my finger over the floral print and looked up at my mother with questioning eyes. “Going out?” I recalled asking with some enthusiasm. The anticipation of going anywhere to do anything was always exciting at that age.
“We’re going to the doctors and then to Chuck E. Cheese,” she told me.
I answered with a simple shrug as she helped me change into my fancy clothes. Up until that day, going to the doctors was nothing significant or bothersome to me. My doctor was usually nice and gave me pretzel rods before I left as a special treat. At the time, I was more interested in the second place we would be headed. When my parents were ready, I went to the car without a fuss. I enjoyed the ride obliviously, even after noticing that the scenery was quite different from when we would go to my regular pediatrician. I remember traveling over a green bridge and being amazed at all of the tall buildings. When my father parked the car, I realized we were in a parking garage that belonged to one of the tall buildings. I had never been to this place before nor did I know the name of it. I had so many questions and yet the sheer size of the building stunned me into silence.
After I was helped out of the car, my mother took my hand and gave it a squeeze as she pulled me along, my father already looking a bit pale. I was fascinated as we entered an elevator, and I was allowed to press the button to make it go. I watched out the clear glass window of the elevator as we went higher and higher and the cars and people below became the size of ants. “What is this place?” I wanted to ask as the elevator dinged, but I kept silent. As we exited the elevator, we came to an oval-shaped desk that was so tall I couldn’t see anything over top of it. I heard my parents talking to someone on the other side of the desk that I couldn’t see, so I turned my attention to my other surroundings. On the wall, there was a painting of colorful smiling fish that somehow caused my stomach to sink. I clutched my mom’s hand a bit tighter and looked away from the fish to see a small empty waiting room that had old books and toys.
Before I could ask any questions or utter a word, my mom was pulling me along again to an area behind the big oval desk. It was a small room that looked almost like a closet that had rows and rows of folded blue hospital gowns that had different pictures on them. I only caught a brief glimpse of the woman who had led my mother and I to the room before she closed a black curtain around us. Again, I didn’t speak, that uneasy feeling causing the pancakes in my stomach to feel like sinking boulders in a lake. My mom didn’t seem to know what to say either, but she offered me a halfhearted smile as she helped me to change into these strange clothes. The fabric of the gown was scratchy, and I did not like the stupid look of the clowns and bears that were staring up at me. I watched my mom shove my fancy clothes into a cubby as she led me out of the small closet-type room again.
This time as we walked, I hardly paid attention to where we were going next as I was too preoccupied and confused as to why I needed to change my clothing. This place looked like a doctor’s office but taking off my clothing was not something I had remembered having to do at my regular doctor’s appointments. Before I had time to react, my mom was handing over my hand to the grasp of a person in scrubs. Instantly, my eyes widened as I was led away by this stranger into a room away from my mother. I looked behind me to see if she was following us, but when I saw that she wasn’t, I started to cry. The stranger didn’t let go of me however and instead picked me up to place me on a cold long table. I wanted to tell the person that I wanted my mom to be right there at my side, but all I could do was cry.
“We’re just going to take some pictures. It’s like being at an amusement park. You don’t need to cry,” the person who led me back to the room said as she pushed on my shoulders to have me lay back on the table. I was an obedient child, so although I was frightened, I stopped my tears and shut my eyes tightly as I pressed my hands against the cold hard surface. After that, the tech picked me up again and set me on unsteady feet as she brought me back to my mother. “Was that it? Could we go to Chuck E. Cheese now?” I couldn’t help but wonder. Unfortunately, if that had been my only experience at this place, then I wouldn’t be typing this story.
Chuck E. Cheese was not next, and instead we were sent to the dingy-looking waiting room to take a seat. While there were toys to play with, I sat there quietly worrying what would happen next. Next was an ultrasound that also caused me some more tears, and then we were back to the waiting area again. Worrying was a new emotion for me, and one that even at that young age I wished to escape. It felt like an eternity as we sat there waiting, although I had no idea how long it had actually been. Another boy and his family came out of one of the neighboring rooms, with tears fresh on his face and a soaking wet gown similar to the one I was wearing. My face filled with concern as I looked at him. What happened to him? Why did he look so distraught? The pit in my stomach deepened but all I could do was sit there. This was the only place I had been to where children around my age sat so still and in such silence as toys and books remained untouched.
Before long, another young woman came to call my name to lead my mom and I back to the room where the other boy had come from not too long ago. For the first time, I could remember pulling on my mom’s hand and dragging my feet as if that was going to stop my mom from making me go with this woman. I looked back at my dad with a fearful expression, but he only smiled at me weakly before looking away.
Trying the only two tactics my young mind could think of to prevent going into that room of the unknown, I reluctantly went with my mom. My mom had always kept me safe, so surely, she would not let anything bad happen to me. When I entered the room, it was cold and dimly lit, causing the white walls to look even more unfriendly. A large table sat in the middle of the room that reminded me of the stainless-steel fridge we had at home if it was turned on its side. The slab of a table was covered in white towels, like the kind that my mother used to wipe spittle from my baby brother’s mouth. A large machine that I didn’t recognize loomed over the table for a purpose that was completely unknown to me. There was a large section of cabinets with a counter and sink that would be too tall for me to reach and a metal tray beside the table that contained…other items I did not recognize.
When my mother talked with the woman who had called my name, I could feel myself taking steps back towards the door. The door was open a crack, and I could see my father through it. Again, I gave him a pleading look, but he just waved at me and turned his head. The dread I was feeling was unlike anything I had experienced before and yet I tried to remind myself that my mom would keep me safe.
Soon after, my mom came to lift me on the table which somehow felt way too big for me.
“Is her underwear off,” the woman who had brought us back here asked in a voice that was a bit gruffer than what I was used to hearing.
Again, I felt confused when I heard the woman’s question. Why would they need to take my underwear off? I didn’t need to go to the bathroom. It seemed like such a strange request. Being the obedient child that I was, I said nothing since I didn’t want to bother the already annoyed sounding lady. Once my underwear was off, I sat there on the table with my mother near my head until the nurse (or maybe she was a tech) spoke again. “Do you know how to make your legs like a frog?” she asked me.
I felt panic well up inside of me again when I realized that the nurse was speaking directly to me. I had no idea what she was talking about. I knew what a frog was, my dad would often bring them home for me to see. I had no idea how I was supposed to be like a frog, and I couldn’t help but feel stupid as if this was something I should know. I looked at the nurse with a baffled look as I tried to rack my brain to figure out what she wanted me to do.
“I’ll help you,” she insisted with a heavy sigh. She then pulled on my legs firmly so that I was forced to lay down on the hard table. She grabbed my bony knees and pushed them up to my chest before placing her chilly hands between them and forcing my legs open until I could feel my knees touching the towels on the table. The position was uncomfortable and strange to me, but I forced myself to hold still since that was what was expected of me.
After that, the nurse ceased talking to me or acknowledging me at all now that I was doing what she wanted. She pulled up the gown to my belly button, the cold air hitting my genitals and causing me to feel like I was going to vomit. I looked over at my mom with a fearful look and she took my hand again. Without a word or warning the nurse cleaned my genitals with chilly antiseptic swabs that caused my body to shiver. I managed to tolerate it, however, without such a word, until the cold sensation was replaced with a burning pain that I had never experienced before.
The unexpected pain that pierced my urethra caused my whole body to jerk, and I could no longer remain the calm, composed, and obedient child I had been only moments ago.
Instantly, I started crying and screaming from the pain as I kicked and squirmed trying to escape whatever was happening to me. “It will be okay Kim. Just try and take a nap,” my mom said to me over and over in the most compassionate voice she could muster. The distraught look on her face only made me fight harder, as it was clear that she was shocked by what they were trying to do too.
Of course, all of the struggling and fighting to place the catheter was only annoying the grumpy nurse further. “What’s the matter with her?!” she barked at my mom as she continued to try and poke and prod me with the catheter. “I’m going to get help!” she snapped as she left the room.
When the nurse left the room and the pain stopped, I finally felt some form of relief. “Is it done? Can we leave?” I asked pitifully through my tears.
My mom looked at me helplessly and ran her hand over my damp forehead trying to comfort me. The look on her face told me she wished she could scoop me up in her arms and hold me, but before she could try, the nurse returned with another person. This time, one person grabbed my knees and spread my legs, holding them down much more forcibly than I had kept them open before and the pain started all over again. Once again, I was reduced to hysterical sobs, but the nurses ignored my pain and fear as they talked amongst themselves about daily events. My mom continued with her futile attempt to comfort me while I wondered how I ended up in this situation. Did I do something bad? Did every child have to go through this? Why were these people so mean? Did they hate children? I thought doctors and nurses were supposed to help people…
I continued to try and struggle as I shrieked and sobbed, but a tiny three your old was no match for two adults. Soon the burning pain was replaced with a different kind of pain that caused my bladder to feel unnaturally full. “I have to pee!” I screamed out over and over in a tortured voice. My mom assured me that it was okay to do so, but to me that didn’t make sense. I was good at using the potty, why would I have to pee here and now? Why couldn’t they take me to the bathroom and make this pain end.
Eventually, I had no choice, and the pressure was too much, and hot burning liquid flowed out to soak the towels beneath me. I felt dirty, disgusting, and broken as I lay there, my sobs finally subsiding from exhaustion. My body felt numb as I laid there looking up at the frightening machine above me, wondering what type of torture would await me next. At that point I didn’t expect anyone to save me since the person who loved and cared for me the most could do nothing to stop it. A rough towel cleaned off my genitals but this time I didn’t flinch. Finally, I was able to be lifted into my mom’s arms again, although they somehow felt less safe this time.
“Here, you did good. Have some stickers,” one of the techs told me as she handed me a roll of stickers as if that was some fantastic consolation for what I had experienced.
***
I wish that I could say that is the end of my story, a bad day, a bad hour, one small moment in time. Of course, like with many people who undergo a VCUG, that is not the case. I could go on to write pages upon pages about the long-term effects having a VCUG has had on me, but instead I will summarize the important parts below.
From that point on, I began to fear doctors and mistrust my parents. I would talk about the test a lot, but my parents would insist it had been no big deal because that was the information the doctors had given them. After a while, I started to withdraw from the world and felt as if I was a bad and dirty child. I felt as if I must have been horrible to deserve to have to go through something so awful. I stopped talking to everyone outside of my immediate family and had a hard time expressing my emotions. Every doctor’s appointment and the time leading up to it was terribly stressful, and I cried through almost every checkup.
Whenever I became ill with an earache or a sore throat, I hid it from my parents as long as possible since I was always afraid that they were going to take me back to the hospital. Even whenever we crossed the bridge that led to the hospital, I would become nervous that my parents were lying and actually taking me back to the hospital to be tortured again.
At age eleven I finally started to understand that the test was necessary for my health, but I still didn’t understand how people could act so coldhearted and uncaring towards a child. Even the simplest medical procedures still bothered me, and I still tried to avoid doctors like the plague. By the time I was in eighth grade I insisted that I no longer needed to go to the doctors for well visits and given that my mom was tired of dealing with my drama, she agreed. I remember being filled with relief when my mom agreed that I could stop seeing a doctor, but that relief was only short lived.
When I reached about tenth grade, I started to notice that there was a little blood in my stool. At first, I convinced myself it was hemorrhoids and that I would be fine. At the time I was only sixteen and knew that if I told my parents what was happening, they would force me to go to the hospital for another torturous test. I tried to look up some information online, but the only thing I could find out about blood in stool was that it was a symptom of colon cancer. As foolish and unreasonable as it is now, fear led me to convince myself that it would be easier to allow myself to die from colon cancer at home than it would be to spend my last days being tortured by medical staff.
I kept this mentality until I was in my second year of college. It was towards the end of my second semester and my health was declining quickly. I was supposed to take a final exam and ended up blacking out outside the test room. Luckily, I was the only one around, and when I came to, I found that I was safely alone in the hallway. I was doing so well in college and enjoying my life that it finally dawned on me that maybe I didn’t want to die and that dying was actually becoming a reality. Later that night, I made the hardest decision of my life and allowed my mom to take me to the ER. To say that this had become my new challenge in life was an understatement. Even to this day I still can’t remember everything that happened to me over the course of the two weeks I needed to stay at the hospital. I blocked most of it out and I hope that it never returns. From what my mom said, I turned into a completely different person. I retreated to a childlike state and let fear drive my emotions. I was snippy and demanding to the nurses and went through doctors like water.
That two-week hospitalization was not the end of my medical journey. I was diagnosed with Ulcerative Colitis and hospitalized for three more different weeks throughout that year. The medication wasn’t working and despite finally allowing the doctors to help me, I was fighting a losing battle. Again, I felt ready to give up, but a small glimmer of hope for a better future forced me to press on. I eventually had to have my entire colon removed and now live with a j-pouch. After 3 major surgeries, living with an ostomy bag for a short time, and more time spent in the hospital I have finally been able to start my emotional journey of healing.
EMDR therapy seems to be helping me with my recovery, but it is a lot of hard work and there are some things I might never be able to achieve like being in an intimate relationship. As a final note, I think it’s important for people to realize that it only takes one moment in time, one event, to have an impact on someone that could potentially last a lifetime.