It was a long road that started back when I was a baby; maybe even before then.
I wished to be born standing up, with one leg pulled up beside my head, like a Kali statue. When I was finally born too many hours later, my head was misshapen from the tools they used to pry me from my mother’s womb. My poor mother. But that was just the start of her challenges with me.
As a child, I was constantly ill. With rashes and other mysterious illness, the doctors didn’t know what to do with me. I was pumped full of medicines with a “we will see if this works” approach. One doctor applied dry ice to my rashes when I was a little girl. So painful!
In first grade, pictures of a skinny, pale, child with dark circles under her eyes were the norm. They decided their next approach was to start removing my organs, starting with my tonsils and my adenoids. “Don’t worry,” the doctors told my mother. “These are common procedures, and these organs are not needed in the body.” Too young to think about it much, I enjoyed the time off of school and that I was allowed to eat popsicles.
Things only got worse after my first surgery. The illnesses went from being respiratory to going deeper into the body. I suffered from stomachache and urinary tract infections that would sometimes make their way to my kidneys. One of my grandmothers was a regular reader of The Readers Digest, and she would use it to diagnose what was wrong with me. These attempts would often land me in a clinic with my mother, getting more tests run. While my grandmother meant well, I hated being a constant science project.
When I was in second grade, I was hospitalized for two weeks. I had been camping with my family in the north woods and suddenly had tremendous pain on the left side of my torso. I struggled to walk, and there was also a high fever. My mother left the rest of the family in the north woods and drove me home to a hospital where we had health insurance coverage. I was barely able to get out of the car, so I was put into a wheelchair in the emergency room. Hours later, after lots of testing, I was admitted with sepsis.
The children’s section of the hospital was a surprisingly joyful place. There were murals painted on the walls of the hallways. My room was a light green color with a mural based on the story of The Old Woman Who Lived in a Shoe. There was also a big window. I played with the controls of the bed as people shuffled in and out of my room. I had a needle taped to my arm connecting me to an IV rack with two fluid bags. This scenario was being etched into my brain, later to be played out repeatedly with two boys in my neighborhood, a diaper pin, and my mother’s masking tape.
Too tired to do any exploring, I slept a lot and watched shows my own personal TV. Then I discovered the nurse call button! When I pressed it, a nurse would come in and bring me a popsicle if I asked for one. One nurse, Norma, was particularly kind. She smiled a lot, and she would make sure that when my bedding was changed, I got the sheets with printed scenes on them. “I want to be a nurse when I grow up,” I told my mother.
During my stay at the hospital, the doctors were puzzled by the pain on my left side. I remember being taken in my bed to another area of the hospital for some more testing. In the elevator, the doctor leaned over my bed to tell my mother in a low voice that they may need to remove my spleen. I didn’t know what a spleen was. “Don’t worry,” he said to my mother as if I was invisible, “this is not a necessary organ. It has no purpose in the body anymore.”
I gradually improved, and after two weeks of intravenous antibiotics, I was discharged from the hospital. My spleen still intact, the doctors decided that my infection must have been due to mosquito bites. The mysterious pain under my left rib was because I had more mosquito bites on my left leg. A + B = C. Except when it doesn’t.
After I was discharged from the hospital, things were only better for a short while. The recurring infections in my urinary tract quickly returned, as well as the stomach issues, although I learned not to talk about those too much. These were beginning to be chalked up to things that were “all in my head.”
There were continued visits to the emergency room that landed me on antibiotics. At some point, the doctors became concerned about the number of infections that I had battled. They asked my mother to bring me in for occasional x-rays of my kidneys. In the Radiology clinic, I was forced to drink a terrible, chalky, liquid and then lay in front of an x-ray machine while a group of doctors watched me pee on the table. The whole thing was disgusting. With all of the diagnostics, they never came up with anything, least of all a cause.
“Maybe you had Lyme disease when you were in the hospital,” my mother and grandmother once told me confidently. “But you were given intravenous antibiotics, which is the treatment for Lyme disease.” They nodded at each other and smiled at me with a quiet feeling of success.
As I grew into a pre-teenager, the mysterious symptoms continued. I would get waves of extraordinary exhaustion, feel like there was sludge in my veins, rashes, stomach issues and then an infection. The symptoms were always in the same order, although now I was also having issues with my reproductive organs as well. I was bleeding more of the month than I should and was in great pain. They put me on birth control pills to fix the problem. When that did not work, I was put on the stronger dose of birth control pills, and I was scheduled for exploratory surgery.
“Nighty night” I heard the Chinese anesthesiologist say with a thick accent as I started to lose awareness of my surroundings. The gynecologist who birthed me had just walked into the room. The V-neck shirt of his scrubs was low enough to show his hairy chest and gold cross necklace. He clapped his hands and rubbed them together as if he was preparing to watch a football game.
When I woke from surgery, I was in tremendous pain. They had cut a hole in my abdomen through my belly button and shoved a camera tube through it to my reproductive area. “You had some ovarian cysts,” my doctor explained. “We had to cut you in your lower abdomen so that we could laser them. Hopefully that will help the bleeding stop.” I complained about the pain and asked the doctor why I had such bad luck. Why couldn’t my sister share some of the health load?! “Good, you’re a bitch,” my gynecologist responded with a smile. “You are recovering nicely from surgery.”
After many months of surgery recovery, the abnormal bleeding stopped. However, I was asked to continue taking the higher dose of birth control pills. No one knew if the surgery or the pills were what stopped the bleeding. I didn’t mind as I saw birth control pills as contributing to my sexual freedom. Catching the eyes of older men in their 20s; I was a child who was convinced that she was already a woman.
While the bleeding had stopped, the recurring infections continued. I could no longer leave town without a “just in case” bottle of strong antibiotics in my bag as I had now become immune to the standard ones. The drugs didn’t stop there, however, as one doctor recommended that I take “preventative” antibiotics daily; 500 mg of the antibiotic that they used to treat anthrax poisoning. “It will prevent infections,” he said. But the infections continued, so I was soon referred to a urologist.
I spent a number of afternoons sitting in the stale smelling waiting room of the Urology department with a group of old men, waiting for my regular torture session. The urologist decided that the reason for the recurring infections was due to bacteria getting caught in the scar tissue that had now become my urinary organs. He said the treatment was for me to come in regularly so that he could stretch the tissue of these organs.
The infections continued, and I did my best to hide them from the world outside of my family. Feeling broken, I didn’t want anyone to think of me as less capable of being a good student, friend, lover, employee, being. Now immune to many kinds of antibiotics, my doctors were becoming concerned about my prognosis. “You should see an immune specialist,” they said.
I do not recall the name of the immune specialist, but I will never forget his lack of bedside manner. A 17-year-old with a lot of angst, I had little patience for such rudeness. “I don’t know why they haven’t given you an AIDS test yet,” he said with a huff. “Clearly, you need to continue with the antibiotics.” I expressed concern that I had made such an effort to see him only to hear that result, so I pressed him about such an approach.
“Look,” he said, “either you continue taking the antibiotics daily, or you will lose a kidney or die!”
“FUCK YOU!,” I stated with the firmest expression of teenage angst that I could muster as I walked out of his office. At that point, I knew that these people could not help me, and they had likely harmed me in the process. I knew that had to find another way or I would be dead before I turned 30.
©Cardinal Speaks