There was me. I was supposedly born healthy at roughly 7 pounds and X number of ounces, but as I turned 1-years-old, then 2-years-old and eventually 3-years-old, it became abundantly clear that something was not right. I could barely walk and could only half-crawl at around 3-years-old. I was a skinny, sickly, and pale child with dried lips and hair that had a mind of its own. My mother managed to tame my frizzy curls with a shrill Chinese-spoken curse at the brush that ripped through my hair and that made tears roll down my cheeks. I was weak, fragile, and it appeared as though I would break at any given moment. I was barely eating and when I did eat, I kept losing weight. Eventually, the paleness in my face turned a tinted and tinged yellow color.
That is when we won the lottery with finding out what was wrong. The lottery-winning story goes like this: I had a fever of 106 degrees and was rushed the emergency room. The golden coins fell in a heap and the Hallelujah chorus went on with the diagnosis: Chronic Kidney Failure. Alas, I was the lottery winner. Oh, lucky me. Upon the diagnosis of chronic kidney failure, I am not exactly sure if my kidneys had failed. All I knew is that my health problems had begun and this lottery-winning announcement led into a series of unfortunate events.
My memories of the time after my diagnosis and its effects are fragmented and like jagged jigsaw puzzle pieces that cannot fit together to form any picture at all. I have depended on my father’s stories about my childhood spent in a hospital. It is frightening not knowing what happened or at least how my shut-down memory concerning my childhood would have perceived everything. It is scary that my dreams and blurred and dizzying memories fuse together so I do not know what is real and what is unreal. My father told me he had many memories of me in the hospital and that most of them were unhappy, miserable, and fair to say a living nightmare. He couldn’t understand what he did wrong in his life that his little girl was sick like this, and he could not make it better if he had all the band-aids and alcohol swabs in the world. He told me how my Mother’s voice became so piercing like a siren full of panic that she would spit out Mandarin phrases combined with broken English words when I had tears streaming down my face from the pain and confusion of what was going on. Then, there was sister who turned sullen and was left home alone and wondering when one of our parents would find time to give her some attention and love while she struggled through her latest homework assignment and adjustments to school.
My father told me the facts: We all have two kidneys, which are about the size of a fist, located in the back area. The primary function of kidneys is in removing wastes through urination. When the kidneys fail, an artificial kidney machine known as dialysis comes into the picture. There are two types of dialysis—hemodialysis and peritoneal dialysis. According to my father, I was put on put on peritoneal dialysis almost immediately and the hunt for an organ donor began. Mind you, this was the 1980’s when living donation was known, but considered a rarity and on the brink of taboo. I tell the truth that all I knew about peritoneal dialysis is that it was now my failed kidneys job to remove my wastes, but I did not know how it went about doing that. Through research and my father’s tales, I had a surgical procedure to insert a small tube known as a catheter. Cleaning solution came into the picture of cleansing or removing the wastes that my failed kidneys could no longer perform. I always have the image of me as a washing machine with detergent poured into me. As I underwent dialysis treatments, the hunt for a suitable and beyond 100% organ donor was in full throttle. Months went by with the waiting, the wondering, and the ripple effects on my weak body and even weaker and unstable family. My Father said that he was tested to see if one of his kidneys was a suitable match. He was just about ready to hop on the operating table to donate one of his kidneys for me when the doctors said that it was beyond 100% of a suitable match. So, the hunt continued.
My father told me the bittersweet stories. The bitter was how he used to argue so intensely with the doctors and nurses hurting me by holding me down and poking me with needles in hopes of finding one more vein. There was the sweet and adventurous story of the dreams my father had to return me back among my stuffed animals, Barbie dolls, warm bed with the Little Mermaid bedsheets, family, and just home and not at the hospital, which had turned into my haunted and endless house. My father has insisted repeatedly when I probe him with more questions and curiosity that no matter the pain I endured with a twist of my face, tears streaming down my cheeks, or the occasional scream that would erupt from my mouth, I was a good and very happy child. Perhaps every parent has to say this, because to admit any faults in their child is to admit faults in the parents. Nonetheless, my father is adamant about this. He has described me as a “trooper” or “survivor” who had and still has the spunk and the social skills of a butterfly flitting from one nurse and person to another and grinning from one doctor to another with my once sickly and pale face and dark hair.
My father told me that his favorite memory of me is when I would shuffle out to the nurses’ station because I was tired and restless from lying in the stiff hospital bed and started chatting with the nurses. I was tiny and frail and the nurses hovered over me like a doll, but I had the energy, spirit, and passion of a larger than life person. I remember singing “Jingle Bells” in the stark hospital hallways when it would be a warm day outside with the sun streaming through the dusty windows. I talked, grinned, and had a cheerful and determined disposition that only became stronger with each moment of pain that I had no control over. My father always ended this story with a faraway look in his eyes and a serene and wistful smile. When he broke away from the memory and trance, he would look at me and repeat:
Age 6: This was me after my 1st kidney transplant. From physical appearance alone, you can see how the transplant changed me from the time I made my first "wish" to this photo here