Chapter Twelve: Death
With a pen poised in my right hand, my spiral-bound notebook journal decorated with Pocohontas stickers laid before me on the wheeled table. My left arm had a needled intravenous line hooked up to the clear bag of liquid drugs that hung on the glinting silver IV pole. The curtains were drawn halfway closed so a dimness of light peeked through. I achingly sat somewhat upright on the hospital bed and fidgeted, trying to find some way to get comfortable. The medicine methodically dripped, slipped, and slid slowly in the tubed line and into my veins.
I glanced up at the bag of IV fluids and a wave of tiredness and dizziness hit me. I wanted to drown under the starched hospital bed sheets and go to sleep, but the whirlpool of emotions was far greater than the sleepy side effect that this powerful anti-rejection medication had on me.
I shakily and unsteadily began to write:
I am not sure if I even believe in you, but I am writing to you anyway.
I am in the hospital again. I may lose my kidneys. I do not understand what I did to deserve all these health problems. I do not think I am a bad person, so why do I have all the problems in the world? Why me? Why is life so unfair? Why can’t I just be a normal teenager and live a normal life? Haven’t I been through enough? When is all this pain going to end? Do you hate me? Did I do something wrong? If so, what did I do wrong and what can I do to make it right?
I really hate you for doing this to me, but I still believe that you somehow exist and that you will make it and make me better. You have to. Please, God, help me. I do not know how much more I can take.
My throat felt like it was going to close and my heart pounded with a lethal anger that I had never felt before. A wave of tears flooded from me yet again. I thought I would feel better after getting all my pent up anger and emotions out in my journal, but I felt even worse. The bleeping and beeping of the machine next to me made me growl and glare at it. I wanted to hurl my journal across the room, rip out the IV needle, and just scream at the top of my lungs, but the anger that came quickly went and was replaced with exhaustion yet again. I slammed my journal shut, slouched back into my bedridden position, and reviewed what had happened since I was told that I had a kidney rejection and may indeed lose my kidneys.
The anti-rejection medication was called “OKT3.” It sounded like a robot or some forbidden technological gadget. It was a powerful and all-mighty medication that had me drowsy and never wanting to wake up. I lost energy in embracing life and being with my friends and family. I felt nothing left in me to fight and live and yet it was the first time that there was this boiling rage and hatred in me and at my body for betraying me since birth. It was the first time I really HATED everyone, everything, my life, and myself. This hatred coursed dangerously through me, battling with and laughing at the OKT3 anti-rejection medication that also flowed through me.
The sunlight now hurt my eyes and made me angry because I could not feel the warmth of it on my shoulders, so the curtains stayed almost all the way closed. I would lay in the lumpy hospital bed awake with dark, dismal, and depressing thoughts that revolved around death whirring in my brain. I thought about death, dying, and if there was a heaven or hell or afterlife or reincarnation. I contemplated if there was even a God and, if so, what could I do so God would allow me to live. Most of all, I wondered if it was my time to die. I could hear my Father’s voice in my head when I pondered about religion and God: “It does not matter if you go to Church or Temple, read the Bible, or say prayers. All that matters is that you believe and that you do good deeds because you want to and not because you have to.” My Dad’s philosophies and spirituality were imprinted in me as each day passed after my kidney rejection.
I came to the conclusion in those waking moments that I was not afraid of death. Rather, I feared living life in this kind of pain and uncertainty. I did not believe life was meant to be lived constantly experiencing pain, bitterness, anger, and sadness. What I feared was that the little girl who died and her parents’ who gave me her kidneys were now wasted; I felt remorse and guilt. I was afraid that I would have to be put on the transplant waiting list yet again and that I would have to start hemodialysis. I feared the pain inflicted on my family once again about what was to happen next with my health, kidneys, and life.
In those days that followed to see if this anti-rejection medication would work, I could not bear to see my family. I was ashamed to see them. I felt that I had somehow failed them. Maybe if I had not went to field day. Maybe if I just took better care of myself. Maybe if I was just never born because all I did was seem to cause trouble and heartache on the people that I loved most with my unpredictable health situations. I pushed away all the people I loved from me when I ultimately needed them the most after I was told that I had a kidney rejection.
When Aunt Terry came to visit, armed with her bag of board games and smooth ivory Mahjong blocks in their incensed-infused silken box, I faced the pasty white wall with tears falling down my cheeks and just mumbled: “I’m tired. I need to be alone.” I heard her get up from the chair and her footsteps fading away from me as I hugged isolation. Aunt Audrey got into her militant mode when she visited me and said: “Stop feeling sorry for yourself. This is not like you. Toughen up.” I turned to her with a tearstained face and blank eyes. Her knitted eyebrows in anger fell away to sadness and speechlessness. When my Dad came to see me and tried to chit-chat with me, I stared practically comatose and catatonic at the fuzzy TV screen. I closed myself off to my friends who called me and asked: “Mare, are you okay? What’s going on with you?” I muttered: “Fine.” That was the end of the conversation. There were no more words to be said. There was nothing left for me to do or live for.
The one time that I did talk more than two sentences to my Father was to ask him: “Dad do you think I should write up my own will?” I had been thinking about it for awhile and finally thought it was about time that I get my opinion on it from him.
The color drained from my Father’s face and he sputtered: “No! What are you talking about? You are too young to be thinking of those things!”
I said calmly: “Just remember that I want to give all that I have to you and my sister.”
My Dad did not say anything else. That was the end of that conversation.
I was slipping and falling into a world I had never been to—an unhappy world where I became my own worst enemy. I drowned and welcomed this miserable period in my life with open arms because I no longer saw the point of optimism when all the optimism I had in the years before the second transplant did not help to prevent this kidney rejection and did not stop the fact that I was in the hospital yet again. My thoughts invaded me like a stampede—furious, raging, and pulverizing any spirit or hope that I had left in me. Worst, I felt that my life was at a standstill of nothingness, no purpose, and that perhaps it was better off that I was dead. I even thought at times of killing myself, because life was not worth living if I had to live it with a constant worrying and wondering as to how long I would be alive or with nervous knots as to what health hurdle I next had to try to leap over. I no longer had hope and this, perhaps, was the most frightening thing of all. Without hope, there is nothing. I was shell-shocked that this was the life that I was meant to live—a life full of unpredictability and uncertainty of my health and suspiciousness that all the good that happened in life could leave me anytime at all.
I felt shut out from the world and I purposely cut off the world. I had never felt so alone and I just wanted to be left alone and isolated from everyone. I was sick and tired of playing a positive façade when all I was filled with was negativity and realism at my rejected kidneys and knowing that my health was going to be an ongoing piece in my life.
My family, friends, and I waited to hear and see if the OKT3 would work their magic. I wished for some control and say in my life again and the truth was the anti-rejection medication working was not in my control. I learned while I lay in the hospital bed and stared at the anti-rejection medication dripping slowly and hypnotically in me that there was only so much control I had in my life—and how frustrating and unfair that was. Then again, life is never fair. In the process of losing control and possibly kidneys, I was losing sight of who I was. I filled my journal entries with my jagged and sharp handwriting with furious and hopeless words, but, rather than feeling better, I would always end up feeling ten times worst. My health problems were suddenly larger than life, defining who I was, controlling who I was, and turning me into someone I did not even know. Who was I? Who had I become?
No one could reach out to me because I refused to be reached. I had to be the one to crawl out of this darkness that I created for myself. My friends and family gave me smiles and hopeful words that I would improve and to keep on fighting, but what could I have done when there was no more fight in me? What could I have done when, every night, I embraced sleeping because it was a comfort, but I feared sleeping as well because I thought I may never wake up again? What could I have done when giving up and death looked so tempting because living just hurt too much? Endless miserable and confusing thoughts swum in my brain as the hours and about 3-4 days in the hospital dragged on. The 3-4 days felt like a lifetime. I then began to wonder just how much time I had to live my life just in case death touched me.
Then, another and probably the biggest question of all came to me that sliced right into the middle of my death thoughts:
"Mary, what are you going to do BEFORE you die?”