Although I don't have a strong faith in any specific God, I have been reading the bible (King James version), both New and Old Testaments, and do pray, on a daily basis. I'm not angry at God, and I do not blame God, for what happened to me. I believe, if God exists, God gave us free will. My accident happened as a result of my own poor judgment, and my actions. I have an EXTREMELY hard time believing in the notion, that God "planned" this for me, or that God "wants" me to suffer. If God is all knowing, and all loving, surely God would not want THIS life for me.
While I don't blame God, I do wonder why God seemingly intervenes in some people's lives, and not others. It doesn't seem just, that God would "play favorites" and miraculously heal some people, while allowing others to suffer. I struggle with the notion of why God hasn't chosen to alleviate my suffering, by curing me, or taking me away from this life. Surely, if God exists, he knows how awful my quality of life is, and how terrible it is to feel chronically ill, and have to endure humiliating, degrading treatments.
I know God has blessed me with talents, and that I have been able to do good, and help others. My question is, how long am I expected to suffer, for the sake of others? Jesus suffered for our sins, but at least he understood, and knew his purpose. I feel at a loss, as to why I must live this way. I have no proof, or concrete answers as to why I must suffer, or for how long. Jesus knew his purpose, understood his mission, and had the definite belief that he would be resurrected, and rejoin God. I have no explanation, no end in sight, and do not know for certain what awaits me, after death. I do not have a direct communication with God, in terms of God answering my prayers directly, or giving me explanations. I don't have angels attending to me, nor the power to create miracles. I think it's unrealistic, and unfair, to be expected to live up to Jesus's standard, when he had the comforts of knowing, and understanding the purpose, and reasoning behind his own suffering (assuming that he was in fact, the son of God).
It is especially hard, trying to make sense of how unjust life seems. I was a good person, and yet I must suffer. There are evil people, that rape, steal, and murder, that have healthy bodies, and live full lives. I know that we will all supposedly get judged once we die. People that do evil deeds here on earth, could receive all types of varying punishments, in hell, but heaven is heaven. Just as an example, theoretically, my grandma and I will both be going to heaven. She got to live a full life, have a family of her own, travel, and experience life with relatively good health, very late into her life. My life was cut short, at twenty four, and I've been suffering horribly, ever since. Yet, we will both get the same reward. I'm not saying my grandma doesn't deserve to go to heaven, I just don't understand the reasoning behind my suffering having a meaning, or purpose. It's not like there's levels of heaven. Heaven, is heaven. So why is it, that I MUST suffer? It's not like I'm going to get some extra special reward, or go to a better heaven, than everyone else.
My art, and writing may help others, but my overall lifestyle and chronic illness has left me feeling unfilled, unsatisfied, and very much like a prisoner. I feel as though I'm being forced to live a painful life, full of sickness, loss, and limitations, against my will. I do not want a catheter, bowel program, to take dozens of pills, have no privacy, or personal space, to be clothed, washed, and fed like a baby. I'm only alive because our society has the means, and resources to keep me alive. I'm forced into living a very unnatural, unhappy life.
I have no means to fend for myself. I either accept the catheter, bowel program, medications, and help from others, or I die. Every day, my life is being artificially extended (against my will-for the sake of others). Under ANY other circumstance, the things I have to endure, would be considered torture, but society ignores that truth, under the guise of medical necessity. Just because I have no other choice, doesn't mean I should HAVE to live this way, or be forced to. Yet my caregivers, and loved ones expect me to accept the unacceptable, because they don't want to see me die. They don't want to lose me. They feel I can contribute to society. I know I can, but for me, it doesn't seem worth the price I have to pay. Living this low quality of life, of limited options, and chronic illness is not worth it, for me.
A reader of my blogs, sent me this analogy:
"Thinking about your situation, Christina, I recently had the following thought. Suppose a brutal foreign dictatorship were to take a political prisoner and subject him to the EXACT same routine your paralysis imposes upon you. That is, they bind the prisoner up tightly so he can't move from the shoulders down, can't feed himself, can't even scratch an itch.
He has to be carried or hoisted from place to place. As an added 'enhanced interrogation technique,' this political prisoner also has his bowels manually evacuated every other day, being strapped half-naked to a commode chair, sometimes for a couple of hours at a time, afforded no privacy whatsoever. And, for the convenience of the guards, plus just to pile extra humiliation and discomfort on this man, they surgically install a suprapubic catheter.
They keep this political prisoner in these conditions for HALF A DECADE. Furthermore, like many prisoners of conscience the world over, the tormented man is never told when, if ever, he will regain his freedom. Maybe a year from now ... maybe a month from now ... quite possibly never.
Now, there is no human rights organization on this planet that would not be howling at the moon over what this prisoner was being subjected to. Plainly, he is being subjected to soul-numbing, psychologically devastating torture. NO ONE would assert what this political prisoner was being forced to endure wasn't a horrible violation of the man's most basic human rights, and certainly no one would be telling him to just get used to it, or it isn't so bad, or that once he 'adjusts' to this new way of life at some unspecified time in the future, everything will just be peachy.
Indeed, anyone who DID suggest that the condition of this prisoner's detainment weren't really so bad, or that his situation was one that anyone could cheerfully live with in time, if he put his mind do it, would be called crazy."
When I read this, I couldn't help but scream (to myself), "Thank you!" Thank you for understanding me. Thank you for seeing reason. Thank you for noticing the obvious, that NO ONE else in my life wants to readily express, or admit. I think everything about this analogy rings true, and can't understand why more people don't see my situation, in this way, as I do, or whether or not they are just afraid to admit it, for fear of encouraging me, to give up. I don't expect my loved ones to cheer me on, or want to see me hasten my death. I just want to feel understood, and validated, for feeling the way that I do.
I'm constantly frustrated, at having to explain, or justify my reasons, for not wanting to live this way. I do feel I'm being tortured; not necessarily by God, but just by the nature of how my paralysis has forced me to live. I do feel like I'm being punished, for one mistake (again, not necessarily by God, but punishment none the less). I do feel like a prisoner, trapped in my own body. I do feel like the lifestyle that PARALYSIS forces on me is cruel, and inhumane. It is, what it is, and I have no choice but to accept it, or die. That's reality. It's a reality I want people to understand, because I think it desperately needs a solution, a cure. People like me, deserve a cure, or at the very least the right to decide whether or not we want to live with paralysis (and everything that entails- not out of choice, but necessity).
People often bring up the fact, that I used to be more optimistic, in interviews I've done, and in the TV episode of Soul Survivors. Back in 2009, when I filmed Soul Survivors, I still had hope of a possible cure. Since then, my health has deteriorated, and before now, I wasn't having to deal with daily fevers, cold sweats and mysterious chest pressure. I know (based on everything I read) that realistically, a cure for chronic SCI patients, is at least a decade away. I honestly don't think I can live this way for another decade. Six years has been hell on earth.
I haven't decided if I'll ever choose to actively hasten my death, by refusing to accept food/water, but I have decided I no longer want to go to any extraordinary measures to extend my life (beyond what I'm already doing- and feel in and of it's self is excessive- such as having the catheter, taking dozens of pills, and having a bowel program). I have a willing will, that states I don't want any artificial life support, and am in the process of making a DNR (do not resuscitate order- in case of emergency). If I get a urinary tract infection, or respiratory infection, I'm not going to take antibiotics. I will let the illness run it's course. I'm tired of fighting for a life I hate living. My hope is, that I've suffered enough, and that when that time comes, God and my loved ones will understand my decision.
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