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Thread: Knowing My Options

  1. #51
    Hello my name is Diane. I am 100 percent disabled. I have had 3 neck surgeries and have auto immune disease with degenerative bone disease. Sjgroens is like lupus and that is the worst along with the fibro and cfs. I live in Ga.I live in chronic pain in two weeks they are giving me a pain pump. I get so discouraged at times. I feel alot of what you are writing. My neck is turnning into an S and Dr. said he may have to go in again and put rods and more metal. I was a nurse for 20 years and worked in a busy emergency room so i know alot about medicine and illness. I don't remember the last time I felt good or well. I only remember the bad days. I referr to my other life and at times i feel it didn't exist.I am very tired. I want to go home many days down here and very few can understand that. but what makes me make it is I trust God. I lean on him. He is my precious father who knows how i hurt and who makes a way for me to get help. He loves u too. Nothing touches us by accident. We became sick and paralyzed to promote god's glory. since we need him more then the well people he gives us more of his time. Every time I have surgery i pray for god to take me to heaven. This last surgery he thought about it, the dr. cut a bleeder and it took two hours to find and fix it so when i awakened I was thankful that he gave me another chance down here for my two grandkids. I reviewed your website , you are beautiful and the paintings are even more beautiful.I have stood at the Lincoln center where u stood. I wnt one christmas. I saw the skaters. and the world trade centers and lots more. i would like to be your friend and we could email each other. i am on facebook too under Diane Corbett. I need a friend and someone to share with. maybe we can connect on facebook. I like your hair. so long and pretty. Remember on those bad bad days just pray and kick the devil out of the way and trust god. Just think before you were born he set the universe into space. What a god. Nice talking to u. Diane

  2. #52
    I would like to move this thread over to the Life forum where I think it belongsl I want to ask tsksushi if she objects first or anyone else for that matter.
    Last edited by arndog; 03-07-2011 at 10:42 AM.

  3. #53
    I am moving this thread to the Life forum after getting the okay from the OP. It is about the choice of ending one's life (suicide) due to the depression and general condition of life as a complete C4/5. It really isn't so much about pain as it is the Hamletian dilemma of 'to be or not to be'. I hope the thread gets read more in Life than in the Pain forum.

  4. #54
    arndog- It's not that I'm ambivalent. I definitely would prefer to be dead. My list for reasons to want to die vastly outweighs my reasons for staying. The thing that keeps me here is fear. I don't have a strong faith in God (like fantasyworld/Diane has and many people have). Instead, I have a mountain of fear and doubt. I was raised Catholic, and although I don't believe in much of the religion, I do hope that there is a God. Catholicism is not a very flexible, open-minded religion, in my experience. I attended Catholic school for the first ten years of my schooling, and although I don't buy into most of the rituals and the emphasis the Catholic church puts on going to church and the Pope, the lessons I learned as a child, still have a hold on me. I wish that I had a strong faith in God, any God, because I have seen what peace of mind and strength that faith has given to other people. One of the reasons that turned me off to my childhood belief in God, was the rigidness of the religion I grew up. I consider myself to be a very open minded, liberal person, and those aspects of my personality make it extremely hard for me to believe in the triumphalist type belief system of most organized religions. I've read a lot about (and watched documentaries) about various religions. I enjoy history. I enjoy philosophy and the history of how religions were formed, and came to be. I've read a lot of the Old & New Testament of the Bible throughout my life. It seems absurd to me that God, an omniscient, omnipotent being, that has the capacity to create our entire universe, would be hung over petty rituals and/or the name by which we call him/her/it/them. I can't believe that if there is a God, that he/she/it/them would punish damn someone to an eternity of suffering, despite that person being kind, and good, because that person wasn't born into the right culture, time, or place, or didn't worship him/her/it/them by the right name. I can't stand that people are willing to hurt other people in God's name. It's horribly asinine to think that such a powerful, all knowing being, would want their/his/hers/its creation to waste its energy and time on hurting one another. If most people would be open minded enough to learn about other religions and consider each other, as equal, human beings, it would be obvious, that there are basic messages that transcend all faiths; to love one another.

    Before my accident I probably would've classified myself as an Atheist. Now I guess I'm Agnostic. I'm not really sold on any particular God(s) or religion, but I do want to believe in something. Catholicism is very clearly opposed to suicide. Catholicism very clearly states that the only path to heaven is Jesus. I have a VERY hard time accepting both of those "truths." I have a lot of friends of varying faiths, that are good people, that contribute to society in positive ways and are kind to their fellow man. I can't bring myself to worship a God that would condemn my loved ones and friends to a firey abyss, just because they don't call him Jesus. If there is an afterlife I have to believe it's open to all good human beings and that if there is any judgment, that it's fair and just. I'll never be sold on the thought that God would care about insignificant things like clothes or what type of food we eat. My Catholic upbringing causes me to have a lot of fear and anxiety over what will happen to my soul, if I have one. I want to believe that God is not as rigid, jealous and inflexible, as Christianity, Judaism or Islam would have us believe. People say God only gives us what we can handle, but I feel like my life is proof that that isn't true. I can't handle the curve ball that life (or God) has given me. There are so many paradoxes, that keep me always doubting and questioning. I mean, if God loves me, how can he/she/it/them let me suffer? If God has a plan for us, then how can we also have freewill? I'm a logical, realistic person, that makes it very hard for me to believe. I know having faith means blindly believing, but it's not something I can force. On the other hand, the teachings that I was brought up with, very clearly state that I will go to Hell if I give up on life. The thing is, I feel like my situation is not average and I don't know whether God would consider not accepting help, as suicide. I'm not an able bodied person, putting a gun to my head, because my marriage failed, or I lost money in the stock market. My life is sustained by very unconventional means. I'm not healthy. I'm suffering.

    It is my doubt and confusion over my faith in God and refusing help that keeps me here. Although I do feel sorry for family, in that I know they would be sad if I died, I feel as though I have already given them 5 1/2 years extra time with me, and I feel that my suffering has been sufficient enough to feel satisfied that I've tried my best, and given them my best effort. I think it would be selfish of them, and cruel to expect any more from me, and hope that despite their grief, that they would understand my death would alleviate my suffering. Besides, if there truly is an afterlife they can draw strength from knowing we'll be reunited. What stops me from giving into my wish to die, is my uncertainty over what will happen to my soul. It's horrible having anxiety over a soul I'm not even convinced I have. All I have is doubt. I'd like to believe that if God does exist, he/she/it/they knows my heart better than anyone, and knows how much I've suffered and how sorry I feel for wanting to give up. I'm don't think refusing help is the same as a healthy person committing suicide. Like I've said in a previous response, if I technically "left my life in God's hands" I'd be dead. I can't care for myself. I'm only here because the resources exist to keep me here. The problem is, I'm not happy. I don't consider this a quality life. I know I have talents. I'm aware I'm gifted in writing and art. The problem is, it's not enough. While I might have the ability to still do certain things, they're not enough to fulfill me. It makes me frustrated, confused and angry that everyone (including God-evidently) would be fine and respect the fact that I don't want to live dependent on machines. I can refuse a vent and get into heaven, but I if I refuse my bowel program, I'm committing suicide and will be damned to hell. Quality of life means more to me than quantity. Most people don't want to admit, or can't understand how awful my life is. No one would want my life for themselves. It seems very harsh to me that I'm forced to endure so much pain and that God would punish me, for not wanting to suffer. It takes A LOT to keep me alive; living a life I hate. The rules of suicide and what God would or wouldn't consider suicide, seem very unfair, confusing and ambiguous. It's fear and doubt that keep me here.

  5. #55
    tsksushi:

    Stephen Levine is a brilliant writer and was a central figure in the arrival of the death an dying movement, a subject that he's written extensively on. You can find most of his books at Amazon. He and his wife Ondrea counseled thousands of individuals who were either terminal or had debilitating conditions like yours.

    I did a Google search to get his thinking on suicide, particularly the moral dilemmas surrounding it, and found this lengthy and enlightening interview from 1999. It doesn't specifically address your anxieties about whether a god, whose mere existence you struggle to accept, punishes those (the Catholics, anyway) for taking their lives -- removing themselves from interminable suffering -- but I think you'll find it an enlightening read.

    And please allow me a comment on your previous post. You wrote: "I definitely would prefer to be dead." At the risk of sounding pedantic, I don't think this accurately captures your feelings. I don't believe that you prefer death so much as you wish to be relieved of your profound physical agony. Believe me I know that we don't polish/edit our posts to the point of taking them to publishing and that you might have chosen to express yourself differently. I don't mean to strike a note of presumptuousness, I just think this better captures your state of being.

  6. #56
    tskushi,

    I have read this whole thread with my heart breaking. I have an incomplete injury at C-5 and have little experience with most of the things you are dealing with, but have a lot of empathy for you. I have one practical suggestion for one of your more minor issues: shaving.

    Before my injury, I had four or five laser hair removal sessions, just because I was tired of constantly shaving. Post SCI, I spent four weeks in the hospital and about the third or fourth week, the nurses and nurse aides began to ask who was shaving me. No one was, but I had so little hair that they were surprised.

    Two years plus post SCI, I am not able to shave my armpits (because I cannot reach them due to no deltoid or bicep function) or my legs (because I can't rotate my wrists well and end up cutting myself badly no matter how careful I am). Even though the laser hair removal sessions I had a few years ago took care of most of the hair, having even a few long curly armpit hairs grosses me out. So a few months ago, I signed up for more laser treatments when they had a deal where you purchased one area and got another area for free.

    Just a thought...one less thing to deal with.

    And another thought...aren't there medications that can reduce the number of periods you have per year? I was "lucky" enough to have suffered my SCI about six months after my last period.

    It seems to me that your biggest issue is feeling sick all the time. It must be very hard to deal with all the indignities you undergo when you feel like you have the flu. Maybe if you could get answers to your physical issues, your depression would alleviate somewhat.

    I wish I could give you a hug.

  7. #57
    How many like me don't love yourself much in the first place? Even prior to my accident I think I was doomed for failure. Now I look at the future with fear when thee

  8. #58
    no offense but 10 years as a child in catholic school system is a curse that is difficult if not impossible for anyone to overcome. i spent almost 15 years in it. i've often wondered if there was a method to wash my brain but i realize the procedure would take the good things of my childhood along with the bad. right now i just try to look for the good in mankind and overlook the bad. i do not think jesus was about dogma i think he was about the practice of being kind to oneself and others. gosh, i've only got a nonfunctional right arm and i spend a good deal of my days in the same thought process as you, i guess that pegs me as a weak ass person who needs a swift kick in the butt from somebody and you an exceptionally strong person. truth is i would have been gone long ago if i was in your shoes and i admire your ability to persevere . best wishes for you going forward. despite what is ingrained in your head i do not thing there would be any reprecussions from god no matter what you decide.

  9. #59
    stephen- You're right. I would much rather be cured & living the life I had, over being dead. The thing is, I no longer see a "cure" to paralysis as being a realistic probability for me. I've lost the initial hope that kept me going, the first few years, after my accident. That only leaves two alternatives; the life I have now or death. I can choose to keep pushing forward, despite my unhappiness, and miserable feelings, or I can give in to my longing to be free of the burdens and struggles of this life. My options are realistically very limited. I'm stuck with, "take it, or leave it." That's how I feel. It all really boils down to me feeling like a prisoner in my own body; trapped living a life I hate and wishing for the life I lost. I've been stuck in limbo since June 5th, 2005, in so many ways. I honestly, can't even imagine what a cure would be like anymore. My body, and mind have been through so much, it would take years of physical and mental therapy, to get back even a fraction of the life I destroyed (I'm paying a high price for one stupid mistake). At this point, I feel like, even if a cure was found, it's too late for my body to recoup from all the damage it's been through. All I know is that most days I'm wishing I would've never survived.

    christopher- I'm sorry you feel that way about your life. I was very happy, and worked very hard to get the life that I had when I was injured. I had my dream job (that I wanted since sixth grade & went through four years of college to obtain- graduated with a 3.9 GPA), was beautiful, in love, had my own place and felt inches away from having all of the pieces of my life fall together; having everything I had dreamed of. I threw it all away, by accident, by diving into a shallow pool of water. I robbed myself of my freedom & a wonderful life. I don't have any reasons, or explanations, for the incredibly stupid choice I made. I don't know how to forgive myself, for destroying my own life, and I don't know how to find joy and satisfaction for less than second best. I'm not ok with constant compromise and chronic illness. The abilities I have left, don't fulfill me. I find it hard to believe I'll ever find acceptance, with how my life turned out. I'm a failure to myself, above anyone else and I've been trying for five and a half years to make up for my mistake, while trying to hang on to hope, that a cure would be found. I feel as though reality has just begun to really set in for me, and my chronic illness is only making it harder to find reason to keep trying.

    kari- Thanks for the ideas. It's been insanely frustrating trying to pin point what is causing what symptoms, and when. Having such a high injury, keeps me very limited, to what I CAN actually feel, and my handful of symptoms turn up, over & over again, for varying reasons. I've tried ruling out a lot of stuff, but never feel like the doctors can tell me anything with certainty. It's always a guessing game. Most of the time it's dysreflexia, and there's not much that can be done to prevent that. We try and keep my catheter stuff as sterile as possible, but I'm always going to be vulnerable to UTIs. BP causes as many problems as it eliminates, if not more, and my only "alternatives" (BP every day or a colostomy) are not options I will consider. So I'm stuck. Most of the times the doctors admit they are clueless, and/or basing their opinions off of me, which leaves me with basically no where to turn. Again, "take it, or leave it."

  10. #60
    posted a new blog...just about my day & echoing what i've already said here. just in case anyone is interested http://lifeparalyzed.blogspot.com/20...hitty-day.html

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