"How To Die In Oregon"

I just watched the HBO documentary, "How To Die In Oregon." It is a film about the debate, over whether or not people in the United States should have the right to "die with dignity," through physician assisted deaths. The documentary crew follows the lives, and deaths of several individuals, and their families. It presents clear arguments for why the right should be given to every citizen, and gives a very intimate view into the lives, and decision making process of the people involved, and what the process is like, in the state of Oregon. It also discusses opposing views, and the struggle involved, in getting legislation, like that in Oregon, passed in Washington.

One of the people the documentary follows, is a woman named Nancy. Nancy's husband had passed away, from cancer in his brain and spinal cord. At the time he was diagnosed with the illness (around 2006 I think), they were both Washington state residents. There was not much that doctors could do for him, in terms of treatment, and his prognosis was very grave. The disease progressed rapidly, and he lost his ability to care for himself. He suffered horribly, both physically and mentally, due to his degenerative condition, and his loss of freedom, and independence. He hated needing to be cared or, and wanted a peaceful, dignified death. At the time however, physician assisted suicide was illegal in his home state. He inquired about moving to Oregon, because he knew it was legal there, but his doctors told him he wouldn't be alive long enough to be able to establish residency there, or be able to give himself the lethal dose of medicine. He resigned himself to staying in his state. His wife Nancy described his final days being filled with pain, and suffering. One of his dying wishes, to her, was to work towards making physician assisted death legal in Washington, so that others wouldn't have to suffer the same way.

Nancy worked tirelessly, volunteering to speak, giving interviews, and making phone calls, to share her husband's story with the public, and to help raise awareness, and support, for the "Death With Dignity Act," which eventually passed, and was instituted in Washington, in 2008. During one of the many speaking engagements the documentary chronicles, the interviewer asked Nancy something to the effect of, "Death with dignity, the other side would call it assisted suicide. Is it assisted suicide?" She replied, "No. It's offense to me, to call it a suicide. Suicide is something someone does, who is otherwise physically healthy, and has their life ahead of them, but is clinically depressed and does not want to live." In another segment, she explains to a crowd of people, that although she and her husband were both raised Catholic, he (and obviously she agrees) didn't think it was right for the government, or any religious leader, to dictate how much someone should have to suffer. I agree with her opinions, whole heartedly.

The documentary discusses the Hippocratic oath, that doctors take, to "do no harm," and presents arguments from both sides. The film is clearly "pro" euthanasia rights, however it does offer examples, and give and take dialogue, from both sides of the issue. Some of the opponents to physician assisted death, claim that enacting such laws, is essentially giving the government the power to classify who is "fit" to live, versus those whose care might seem otherwise burdensome, or costly. I think this line of thinking is completely misguided. No one is saying "everyone with such, and such diagnosis, should be euthanized."

Giving citizens a dignified alternative, to assured suffering, has nothing to do with placing judgement on individuals. Everyone should have the right to determine what he/she considers to be a worthwhile life. Not everyone with a terminal diagnosis would choose to cut their life short. Not everyone that is disabled finds being dependent on others as painful, humiliating, or degrading. Everyone has their own unique threshold for suffering, and what he/she might classify as a life worth living. The point is, those people who do have a terminal illness, or incurable chronic illness, should have the right to determine when they've suffered enough. We as society, as loving, compassionate citizens, should recognize that in some cases, there are no medical answers or relief to suffering, but death itself. We should not demonize people for not wanting to suffer, or doctors for wanting to help ease someone's suffering.

If doctors have no methods to ease someone's physical illness, and that person is guaranteed to have a future filled with crippling limitations, lack of independence and/or physical suffering, than in my opinion, it is DOING HARM, not to offer a peaceful alternative. It is not right to say, you must suffer, because we can't help you. If death is a certainty, why prolong the suffering, and poor quality of life?

The documentary shows a man named Randy, dying from prostate cancer. In the film, he talks about his outrage over receiving a denial letter for more chemotherapy. Randy had already had several doses, but the treatments had been ineffective. He was too poor to pay for the treatments out of pocket, and the state of Oregon was refusing to pay for more treatments, because based on his diagnosis they felt that further treatments would only be futile (aka a waste of tax payer money), and were only offering him palliative, or "comfort care." He showed the rejection letter, which outlined the comfort care measures, that he COULD qualify for, given his condition. In the list, was the option of physician assisted death. He was completely irate, accusing Oregon of "putting a price on his life", and felt as though he was being pressured into dying. After going public with his story, the state agreed to pay for more radiation treatments. Despite treatment, he died a month later.

Giving people options, is totally different than imposing something on people. I don't think Oregon was wrong for denying Randy treatment. Some cases are lost causes. I receive all my medical benefits through the government, (Medicare and Medicaid) and believe whole heartedly that the government has the right to approve, or deny treatment, if they have clear evidence that it is unnecessary. As it is, there is a ton of price gauging, abuse of the system, and wasted money.

A perfect example, in my life, is receiving physical therapy. Due to my injury (C4/C5 complete), I was left completely paralyzed, with no hope of recovering any sensation, or functional ability, below my injury level. Directly after my accident, I received three months of inpatient acute, physical and occupational rehabilitation, and then six months of outpatient subacute rehab. For the first year and a half, after my accident I lived in and out of the hospital, and nursing facilities. During my stay in the nursing home, I received PT/OT five days a week (about a half hour of range of motion stretches, and exercises, done with the assistance of a physical therapist). Once I moved out, into my own apartment, the state paid to have a PT/OT therapist come to my home and teach my aides how to do range of motion exercises. I have been living here for over four years, and have only had PT/OT come to my home twice. The government will not approve me for outpatient PT/OT, because they feel, based on my diagnosis, anyone can be trained to do simple range of motion exercise with me. My prognosis, does not include "getting better," or regaining mobility, therefore they are justified in not wanting to pay for services that would be a waste of time and money. It doesn't make me angry. It makes sense.

I WISH I had a peaceful alternative to end this life. I don't think Oregon officials were wrong for denying the man in the film treatment. Clearly, he was terminally ill. Offering him the OPTION of a physician assisted death, was just that; an option. He had every right, not to exercise his right to die. In his opinion, his life was worth fighting for. That's all well and good, but there are cases where treatment is futile. If the tax payers are footing the bill, the government has the right to say whether or not they are going to pay. If you can afford it, and feel extra treatments are worth the cost,and risk, than more power to you. No one should tell you how you spend your own money (taxes & benefits aside). Just as, no one should force suffering upon others.

I HATE the life that my paralysis has forced onto me. I do not think it's right, or humane, to force me to live this way. If I lived in Oregon, or Washington, I would most certainly exercise the right to die with dignity. I'm not sure if I'd qualify, because I can't technically administer the medicine to myself. I'm a little fuzzy on the law, even after watching the film. They clearly point out that such legislation is feasible, because the patient is giving themselves the medicine, versus a doctor giving a lethal injection. However, everyone in the film, clearly had other people prepare the mixture, and help them. All they had to do was physically be able to ingest the concoction, by mouth. I could do that, but am unsure if my situation would be approved.

Most of society, and my loved ones don't like to admit the fact that paralysis (at high, complete levels- such as mine) is no different than a terminal illness. I have absolutely no means of self sufficiency. I am FORCED into accepting help for EVERY aspect of normal, daily life: to eat, go to the bathroom, dress, bathe, etc. I have two options: accept help and prolong my life, and therefore my own suffering, or reject help, and suffer a long drawn out, painful death. That is an incredibly harsh, cruel position to be in.

I'm not saying everyone with a spinal cord injury, or paralysis should want to die, or that they should be euthanized. All I'm saying is that each case should be judged based on the individual, and his/her own definition of what is a quality life. There should be an alternative, peaceful way to end someone's suffering. The choice, and decision to exercise that option, should be left to the individual. Not everyone will choose to die.

I for one, would welcome a peaceful option. For me, being completely paralyzed has been hell on earth. I absolutely detest needing help, and having no privacy. My physiology, (having IBS) has complicated my situation, and creates a lot of pain, and discomfort. I'm forced into taking dozens of pills, and into enduring horrible treatments (like bowel program-where a nurse needs to manually stimulate my body into evacuating stool), that create as much discomfort as they alleviate, if not more. There is no cure in sight for me, and very little that doctors can do to get rid of the autonomic dysreflexia, I deal with on a daily basis. My tolerance for sitting is poor, and I'm left practically bed bound. I am literally a prisoner within my own body. Right now, my only means of ending my suffering, is to reject the help that is given to me every day. Rejecting help will ensure my death 100%, because I can not feed myself, or get something to drink, without assistance. I can not go to the bathroom, or clean myself. Without help, my death will be assured, in only a matter of time.

In other words, my only option of ending my suffering (which in and of itself is a certainty, given my body, and my condition) is to slowly starve myself to death, or hope to die from untreated infection. Both "options" will result in my death, but will most likely be very painful, and drawn out, and incredibly hard for my loved ones to witness. For me, the best "help" for me, would be a dignified death. I hate that I am so trapped, and so limited by the law. It pisses me off, that religious "morals" and belief systems are imposed on me, and force me to suffer. My life has come to a point, where living equates to suffering. The scale has tipped, irreversibly, to being a life of overwhelming suffering, versus overall good. I truly wish I had the right to die peacefully, and quickly. I'd take that option in a heartbeat.

The documentary also follows a woman, named Cody, who was dying from cancer in her liver. Throughout the film, it shows her with her family, and each of their perspective's about her choice to exercise her right to die. For a little while, she had a period of feeling good, and had outlived her prognosis. She knew that she had the pills, waiting for her, but she chose life. She explained that she knew she didn't HAVE to ever take the pills, if she didn't want to, but that she drew peace and comfort from knowing, that she could spare herself from eventual suffering. She knew she was going to die, either way, but she didn't want to let her illness bring her to the point where she could no longer care for herself.

Naturally, Cody's family was sad, that she was going to die, but they were also very understanding, and supportive of her decision to hasten her own death. She involved them in her thought process, and clearly outlined what SHE considered to be a quality life, and how far she was WILLING to continue to suffer. Thanks to her having the option to die with dignity, she and her loved ones were able to prepare for death, together. They were able to enjoy her last days together, and say their goodbyes to one another, while she was still relatively able to care for herself, and was able to die with pride, and grace. She was able to spare herself the suffering, of added pain and the humiliation, of needing to be cared for (I can relate to her feelings), and spare her family the cost, and the physical & emotional burdens of having to watch her suffer and have to care for her.

Some people can tolerate more pain than others. Some people don't mind being dependent. Some people aren't bothered by vanities, modesty, or pride. Everyone is different. Every case is unique. For those people, whose death is inevitable, without medical intervention, or for those of people living with incurable, painful conditions, there should be a humane alternative, to forced suffering. Giving people the right to die, is not the same as killing people. The choice should remain with the individual that is faced with the suffering. Suffering shouldn't be imposed, or expected, just because there isn't a cure, or viable treatment. We treat our pets more humanely, than we treat our fellow man. I agree with the right to die with dignity, and wish more people would open their eyes, hearts and minds. I wish more states would free their citizens from the oppression of religious beliefs, over law, and give citizens the right to decide how much/little suffering they are willing to endure, and give doctors the right to uphold their oaths, to help ease suffering; even when life itself is suffering.


- Posted using BlogPress from my iPad

The Suicide Tourist

I just watched a documentary, called "The Suicide Tourist." It's an very moving, powerful, documentary, chronicling the final days, and eventual suicide, Craig Ewert. The documentary takes place in Europe, and gives an extremely intimate view, of Craig's life, and death. It is a highly thought provoking piece, that raises many questions, about quality of life, and the right to die. Craig himself, is very articulate, and poses some strong arguments, for his decision, and his opinions, on living, suffering, and on dying. I think it offers an exceptional example of why people, OUGHT to have the right to "die with dignity" and demonstrates good arguments, for why euthanasia should be legal, here in the USA. On a whole, the documentary is very tastefully done, and an incredibly brave, and generous contribution to society, on the part of Craig, his wife, and his children. If I could, I would like to thank Craig, and his family, for their willingness to share his story. I have a high respect for his loved ones, in that they supported his difficult decision, and stood by his side (particularly his wife), while he carried out his wishes.

Craig and his wife, both American citizens, had moved to Europe, before he got sick. They had two grown children, and decided they wanted to travel, and live abroad. Craig, who had been a professor of computer science, got a teaching job in England, and he and his wife relocated. His wife started started studying for a Phd, in law, and they were enjoying living their new life together. Everything changed, when Craig started feeling weak, and ultimately was given the ALS (Lou Gehrig's disease) diagnosis, and told his best case scenario, was two to five years left, to live. Around six months, after being diagnosed with ALS , and his rapid deterioration in health, Craig decided he wanted to end his life.

He started doing research, and was disappointed to discover that physician assisted suicide, was only legal in three states (I know of Oregon & Washington). He became frustrated by the fact, that people expected him to just accept his fate, and feared more than anything, what life would be like, once he could no longer speak, or communicate. He feared becoming a prisoner, in his own body (which I feel I am- even though I can communicate- and know what it's like to be completely paralyzed, without speech, from my time spent hooked up to a ventilator) and doubted his life, or death would be as "peaceful" as third party accounts described. He brought up an excellent point, that just because a person is "still," to the casual observer, it doesn't mean that the person is at peace. Being trapped, with no way to communicate, and stuck with nothing but your thoughts, and hauntingly painful memories, is anything, but peaceful. I know from experience. It is hell, and pure torture.

Wanting to prevent further suffering, and speed up the process, of his inevitable death, Craig continued his search for a legal way to end his life, and discussed his viewpoint, feelings and fears, with his wife and children. Realizing that he was suffering, and death was fast approaching, his family respected his wishes, and supported him, in carrying them out. He ultimately found out about Dignitas, a clinic in Switzerland, which offers assisted suicide services, to Swiss citizens, and foreigners alike. Knowing he had to be able to swallow the lethal dose of sodium pentobarbital himself, and that his window of opportunity was closing (due to his degenerative disease, and the unpredictable nature of the illness), he set up his appointment, and was accepted, to receive their services.

During the filming of his four, final days, Craig talked about his reasoning behind wanting to commit suicide, and his opinions on it being illegal, throughout the UK, and much of the US. He very poignantly expressed the fact that, many people throw the issue of God, into the matter, as a leading factor, for why there isn't more support, for assisted suicide, and how it is ironically unfair, that "playing God" is seemingly only a matter of contention, when it involves ending a life (and suffering), versus saving it. He pointed out the glaringly obvious distinction, where doctors "play God," by saving newborn babies (through extreme medical intervention) and keep people alive, unnaturally long lifespans, through medicine, and machines, but that it's "ok" to "play God," when it preserves life. He pointed out the fact, that his respirator, had been "playing God," keeping him alive, and couldn't understand why it was only acceptable, to intervene in extending life, but unacceptable to end life, even when there is no hope of cure, and definite suffering present. I too, do not understand, the rationale, behind this unjust form of thinking.

The documentary discusses Swiss law, and says (which I've read in many articles) that because of the fact that euthanasia is illegal, in the UK, and most of the US, the Swiss government has seen a huge influx, in "suicide tourism," and that outside countries (namely the US & UK) have been pressuring Switzerland to reject foreign petitions, to die within their country. This scrutiny has made it difficult, for clinics like Dignitas, to accept any, but the most extreme, and most desperate of cases. Luckily for Craig, he met Dignitas' criteria.

I think it's a shame that people like Craig (and myself) are forced into living with incurable, extreme disabilities, essentially against our will. I can completely relate, to his suffering, his viewpoint on being forced into dependence, and his fears of feeling trapped, and hopeless. It is a shame, that anyone should have to fly half way around the world, and petition a foreign country, to die a dignified death. I think it is cruel, that our society (and the UK) would rather watch people suffer, who would otherwise be dead, if it were not for medical intervention, than to allow us, to choose what we can tolerate, and what we deem, is a life worth living. Why is it so wrong, to offer a peaceful death, to someone who has no means of living, on their own, to whom medical science can offer no cure, and who is, in his/her own opinion experiencing suffering? It makes me angry, that people like me and Craig have to leave the country, or slowly starve ourselves to death, or slowly die from infection, rather than be given a HUMANE, easy alternative, because other people (who have no clue what it's like to be in our shoes) think it's "right," or "wrong."

I know the pain, and loss, that Craig was faced with, and why he decided to end his life. I know, very well, the terror of being completely reliant on others, and the heaviness, of feeling like a burden. I too, know the sadness, and disappointment, of having to express feelings of wanting die, to the people I love, and the pain and guilt, that comes along with deciding I want to give up on life. I know the shame, blame, and guilt, that society at large, and religion, bears down on the individual. It is a horrible situation to be in.

I know what it's like to look into the eyes, of the people I love, and tell them that I feel my life is no longer worth living. I'm living through that pain, right now, and know how hard it is to let go, even though every fiber of my being is exhausted, and wanting to give in, my conscious keeps reminding me, of the pain my death will cause, and I wish I knew a way to avoid hurting the people I love, while at the same time ending my own suffering. I know how horribly frustrating it is, to be a prisoner, within your body. I'm trapped, exactly like Craig, and I understand his desire to escape.

I applaud Craig, for his courage, and his family, for their selflessness, and compassion. I don't think it's wrong, to want to die peacefully, when death is inevitable, and medicine offers no hope, of alleviating a person's pain, and all the future holds, is a life full of suffering. I wish I had a peaceful option; a means of escaping this life, that didn't involve added suffering, and putting my loved ones through a long, painful process, of watching me slowly die, day by day. I wish everyone could watch "The Suicide Tourist", and gain some perspective, on the fact that, sometimes the most humane, compassionate thing to do, is to offer a peaceful death, and to let go, versus sentencing someone (that would otherwise be dead anyway) to a lifetime of suffering.


Video- http://video.pbs.org/video/1430431984

Information about ALS-
http://www.alsa.org/about-als/what-is-als.html

- Posted using BlogPress from my iPad

Paralyzed Without Joy

An online friend of mine Laurie, recently asked me if I'd read any blog postings, by a woman named Heather, who writes a blog called "Paralyzed With Joy!" Heather had left a comment, on one of my previous posts. I saw the comment that she sent to me, and have to be honest, in that I wrote her off as a religious fanatic, and never visited her blog (until the other day, when Laurie brought it up). I'm ashamed to admit that, because it sounds presumptions and rude of me, and that's not usually how I am. It's wrong of me to judge her for saying that she's "joyful," just like I feel it's wrong for people to judge me, and expect me to be happy. Her comment just rubbed me the wrong way, because I disagree with the notion that "God did this to me." I take full responsibility for my mistake. Perhaps, it's because she was injured, through someone else, slamming into her car, breaking her neck. She wasn't at fault, and I'm guessing finds comfort, in the line of thinking that it all happened as part of "God's plan." I stupidly dove into a shallow pool. My foolish mistake cost me my health, and the life I loved. Although, I didn't intentionally dive, to harm myself, and there were many variables in play, it's my actions that ultimately caused my injury. God didn't push me into the pool, nor do I believe (if such a being exists) he/she/it/they planned this life for me. I don't believe in destiny, or predetermined futures.

I know she didn't intend to offend me, no one ever does, when dishing out religious counseling, or offering up scripture. It's just hard, for me, as a skeptic, and often cynic, to accept. While I am grateful for any feedback I get, it is hard for me to accept, when it's coming from a religious perspective. She's not the first to offer up words of "divine wisdom," nor will she be the last. Though appreciated, I take every word of advice with a grain of salt, because no one but me, has to live in my shoes, and knows my suffering, better than me. As far as religion goes, no one can offer up proof, that their beliefs are truth, you either believe it, or you don't. Personally, I have a hard time believing in a God that would WANT THIS life for me.

Laurie and I met through Facebook. She has MS, and got to know me, by reading my blogs. One day, she decided to write to via Facebook, and shared some of her story with me. Although there is a generation gap between us, we share a lot of interests in common. She was also a teacher. We've been writing emails back and forth for some time now, discussing all sorts of things, like languages, movies, pets, religion, family, friends, and our personal struggles, dealing with our disabilities and adapting to life with paralysis. Right now Laurie still has much more functional movement than me, but is continuingly having to adapt to her degenerative disease. I often wonder if it would've made it any easier on me, if I'd gradually lost my abilities, versus losing everything over night. Either way, paralysis sucks, and we both struggle to find answers for "Why us?" and searching for reasons to keep moving forward, despite it all. It helps having a kindred spirit, to talk to, even if you're each having a rough day. Although it makes me sad to know other people are effected by paralysis, it helps having others to turn to, that know what it's like to need help, and having lost independence. It especially helps having someone to talk to that is like minded, and shares a similar perspective, and attitude, towards THIS lifestyle.

Laurie is like me, in that she is disatified with compromise, and hates the ever growing number of limitations that paralysis has forced upon her. We are both very unhappy with the indignities of paralysis, and would most certainly never describe living with such lack of freedom, and forced dependence as "joyful." The mere name of Heather's blog irritates me. How anyone could possibly be "paralyzed with joy" is beyond me. I can't help but think she's insane, for saying things like "On a scale of one to ten (ten being the most satisfied with life) she is a ten" or six years post spinal cord injury, she's "the happiest she's ever been." On one hand, I want to slap myself, for being so critical, and judgmental. Clearly, I don't know anything about this woman, besides the fact that she is paralyzed, and apparently happy. Who am I to say she should, or shouldn't be happy, just because I have such a hard time coping with the changes in my own life, and hate every aspect of being paralyzed? On the other hand, a part of me is even jealous, that someone in a similar condition to me, could be so happy, when I'm so miserable. I know the secret to her happiness, and understand how it gives her such a rosy perspective on life. The source of her happiness, is something I wish I had, but can't force upon myself, and that is blind faith. I've seen it many, times; people like her, and Joni Erickson Tada, that despite their paralysis, they're able to be happy, and draw strength from God (specifically Jesus, in both of these cases).

I struggle with having faith in any God, let alone any one specific God. Although my accident has stirred up fears about God, and an afterlife, it hasn't helped me make any breakthroughs, or have any great epiphanies. On the contrary, it has put more, and more doubt, in my mind about God, and his/her/it/their supposed interest and/or love for me. As for being joyfully paralyzed, I see that as being a product of her convictions to God, not how extraordinary her life is. Let's face it, no matter how you dice it, paralysis sucks. It is a struggle, living with paralysis every day. I don't believe for a minute that any sane individual would choose to be paralyzed, over being healthy. Paralysis might have opened her eyes, and fostered in her a new appreciation for life, or feelings of being given a "second chance", after coming so close to death, but I guarantee she'd prefer being able to care for herself, over the life she has now. It is her belief in God, that gives her the ability to see purpose and meaning, in her suffering, and that gives her joy, despite being paralyzed.

I wish I could say the same for myself, but I can't. My belief in God is shaky, at best. I tend to lean towards Eastern philosophy, and feel turned off by Christianity. Some of my resistance to Christianity is my own, logical analytical nature, and my finding it hard to believe in a God, that would be as petty, jealous, or harsh, as the God of the Old Testament, and my historical knowledge of how Christianity formed, and how man has corrupted, and influenced all organized religions, in general. Growing up Catholic, the church, and it's rituals always seemed suffocating to me. The mere notion that Jesus is the ONLY path to "salvation" has always pushed me away. I just can't believe in a God that would eternally damn good people, just because they worshiped him/her/it/they by a different name. Logically, I don't even understand the huge rift, between Muslims, Christians, and Jews, given the fact that all worship the same God, and believe in the same prophets. Despite their common roots, and belief systems, people use "God's" name to promote their own selfish, man made agendas, and divide humanity. The more I have learned over time, the less I have come to believe, except for one unifying moral, to love oneself and my fellow man. It's the one idea that makes sense, and stands up to the test of time, throughout all religions, and faiths.

I think of having a strong faith in God, can be as equally powerful as ignorance. Ignorance is bliss. Blind faith is like that, in many ways. No matter how outlandish, or unscientific something is, people with faith believe. Faith is blind, and unquestioning. It also lets people be "blind" to the realities of life, and helps paint a silver lining on everything. At times, that blind aspect of faith can be bad, because it can be used as weapon, to make people do, and say things that hurt others, in the name of "God", or accept situations, no matter how horrible they are. I don't think God (if he/she/it/they exists) would've bothered giving us logic, and reason, if he/she/it/they, didn't want us to sometimes use those abilities to evaluate situations for what they are, and think critically, for ourselves. Likewise, if God gave us freewill, then I believe he/she/it/they is solely an observer, of our lives, and doesn't often intervene (if not, at all). I don't think God "gives" us a bad, or good lot in life. I think we get what we make of it. However, that also means I don't buy into the BS that, "God only gives us what we can handle" and "everything happens for a reason." I think sometimes bad things just happen, and they most certainly are too much for any one person to handle. I many respects, I hate myself, for making the stupid mistake, that paralyzed me. On the other hand, I love myself, enough to feel like living with paralysis, is cruel, and unusual punishment. In my case, my punishment VASTLY outweighs, my mistakes, and I don't think it's wrong for me to be upset about, or not want to have to live the way paralysis has forced me to. If God is watching, he/she/it/they knows how hard my life is, and how much I'm suffering, and I don't think it's fair, or just, for anyone else to judge, either way.

It pisses me off, when people down play their paralysis, because I feel like it's crucial for the average person to understand how hard it is, to live this way. I mean, if life's so grand, why bother finding a cure? I believe the key to gaining support for research, is by touching people's minds and hearts, on a personal level, by putting faces, names, and stories, to the word "paralysis." I believe that every person I touch, by sharing my story, and sharing my pain, is one more person that's aware of possibility that his/her life could change; one more person who cares about finding a cure; and one more person that can better appreciate the health, and abilities he/she still has. Yes, maybe if I had a stronger faith in God, this would all be a bit easier to handle, but that wouldn't diminish the fact that I'm dependent on others, sick and in pain. I don't want people to forget, or overlook the realities of living with paralysis. It's not ok, having to have a bowel program, a catheter, needing to be fed, bathed, and clothed. God, or no God, those are REAL, tangible things, that I'm FORCED to face, every day. Paralysis doesn't give me an option, and I don't get a break. I have to deal with all of that stuff, plus all that I lost, plus the sickness, every second, of every day. Does that mean I never have a joyful moment, or have anything I'm grateful for, of course not. However, reality is that living with paralysis sucks, and I'd give ANYTHING (besides my soul- ironic, I know) to just be healthy again.

I'm skeptical of anyone who says they're "happy" with living with paralysis. Laurie is Jewish, and like I said, I was raised Catholic. Neither of us is very "religious", nor do we blame God for our paralysis. It would be very easy, to put the blame on God, since after all, if such a being exists, and created the universe, space, and time, he/she/it/they could certainly fix something as simple some faulty nerve connections. We both take a more logical, fact based approach to life, and chalk our situations up to bad luck, not some divine plan. Rationally, it's hard to accept that anyone would be thankful, to be paralyzed. It seems against human nature, to WANT, or prefer to be dependent on others, and have a constant invasion of privacy, and personal space. The fact of the matter is, paralysis strips people of freedom, and forces a tremendous amount of change into one's life.

Most people would not want to live this way, by choice. It's not to say, that I don't believe people can find things to make them happy, and give them purpose, despite paralysis. I believe each individual's case is unique, and factors like religious beliefs, level of education, career, financial status, personality, support network, and level of independence before paralysis, play a HUGE role, in how "happy" a person can be, living with paralysis. You can't miss, what you never had, and some people lose a tremendous amount more than others. Suffering should be evaluated on a case, by case basis. Just because one person can find "joy" living with paralysis, that doesn't mean everyone can. I think each individual has the capability, and right, to asses their own level of suffering, versus amount of enjoyment. I don't think everyone can find balance, or the extreme opposite, happiness.

Naturally, Heather is entitled to her line of thinking, and in many respects is lucky, to be able view life, in the manner she does. I think that everyone has their own desires, standards, and threshold for what they can tolerate, and that living with paralysis should not be forced upon people, without escape, in the manner that it is. Living this way, for me, and others like me (Laurie for example) find living with paralysis closer to Hell, than to Heaven. I don't think that makes us weak, or wrong, just as it doesn't necessarily mean extraordinary people like Heather, Christopher Reeve, Joni Erickson Tada, and Dr. Dan Gottlieb, as being "better," or stronger, it just means we're all unique. Life is not like a cookie cutting machine, where one size fits all can apply. I think each person has the right to determine what he/she considers to be quality.

I realize that not everyone agrees with that philosophy, but personally, I feel like in certain situations it is justified, not wanting to live (aka- prolong suffering). For example, I don't want to ever live dependent on a vent. I have been on a vent before, and would prefer death, over ever having to go on one again. I realize that there are people out there that live dependent on vents, that feel happy, and fulfilled. Does that make them superior people? I think it just makes them different. I think everyone should have (and do, to a certain extent- through advanced directives and living wills) the right to determine what they consider to be quality. After all, it's very easy to hand out advice, when you're not the one having to live through it. Some people would disagree, and say that people should go to any lengths possible to extend life, like people hooked up to machines, despite being in a vegetative state (such as the Teri Shiavo case) . I realize this is a hot button issue, that people feel strongly about. I'm merely stating my own personal opinion, given my life experiences.

I personally feel as though I'm at a point of living with paralysis (C4/C5 complete injury), where I feel as though living, is only prolonging my own suffering. I battle myself every day, to keep pushing forward. The thing is, I feel as though my life is being sustained by unnatural means. If I truly left my life "in God's hands", I'd be dead a long time ago, because I have no ability to fend for myself. I'm kept alive by people, medication, and awful treatments (suprapubic catheter & bowel regime). I'm only alive because our society has the means necessary to provide me with all the services and things I need. However, there comes a point (right now, in my case) where one must evaulate if the ends justifies the means. I definitely can not say that I'm "paralyzed with joy." I feel more like a prisoner, than anything, and want nothing more than my healthy body back. I hate being dependent on others, and being chronically sick. I'm glad for people like Heather, in that I don't take pleasure in hearing about other's suffering. It's nice for her, that she is happy, but I can't imagine ever finding that level of enjoyment, or contentment, with having to live with so much pain, and compromise.

"Paralyzed With Joy!" - http://paralyzedwithjoy.blogspot.com/



- Posted using BlogPress from my iPad

Faith, or lack there of...

Although I grew up in a Catholic household and attended Catholic school for ten years, I never really bought into the belief system. I guess you could say that I've been an analytical person my whole life, and tend to question things that don't seem logical to me. It's very hard for me to trust in anything that isn't supported with evidence or cold hard facts. I guess most people just follow through believing and/or practicing what ever religion their parents are, or the religious beliefs of their country. On a whole, the adults in my life are not overly religious, so that might have influenced me to doubt or question my religion lessons in school, and later in life. Even as a small child, I had a difficult time believing in the stories of the Bible and magical characters like the Easter Bunny or the Tooth Fairy. Other than telling my Kindergarten class that Santa Claus didn't exist, I tried to play along and not to ruin it for my friends and siblings.

I tend to enjoy playing devil's advocate and like to question or pick apart subjects and have mini debate sessions with my friends. It can be a bad habit at times, because it makes it near impossible for me to enjoy movies, television or books at face value, without over analyzing every detail. It impacts my social life at times, in the sense that I often read into situations more than necessary and end up creating undue stress or anxiety for myself. Generally speaking, I'd say the ability to analyze facts and assess social situations are both good qualities. My problem is that in the past, I tended to only apply my analytical skills to my studies, career and planning, while acting spontaneously and carefree in other aspects of my life. Sometimes, when I look back on my life I wish I could've been more consistent and took the time to think through all the choices I made. I always joke that I'm book smart and life dumb. Although my accident has given me a new perspective on life and opened my eyes to so many things; the one thing that has always remained the same is my lack of faith in a higher power.

Logically, I have an extremely hard time believing in any concept of God. I rely heavily on science and enjoy learning about how things work and why things do the things they do. I love learning the history of things and understanding how and why things are the way they are. In general, I like having answers and proof to back them up. I would imagine most people feel the same way. It is comforting when someone is able to offer you a reason or a solution to your questions. On the contrary, it's frustrating and stressful when no one can give you a straight answer or fix a problem you might have. My spinal cord injury is a perfect example of a puzzle without a solution. Not knowing how to fix my spine is infuriating. The fact that so much time and energy is spent on finding answers to other questions, when we (humanity) still haven't solved the problems of our own bodies seems absurd to me, but that is a whole other topic. What baffles me, is how people can have faith in something they have no proof of, or logical reasons for why or how it exists. In fact, I'd argue there is equal evidence, if not more, that should discourage people from having faith, yet people continue to believe. I'm fascinated by faith and often envy those that have it. I want to know what motivates people to have such one sided relationships and what influences them to believe.

Prior to my accident, I'd probably consider myself an Atheist. A lot of people confuse atheists with Devil worshipers, although they are very different. At the time of my accident I was at an all time low in terms of having faith in any deity, either good or bad. My childhood was filled with obstacles that ultimately turned me further and further away from believing in God. My parent's divorce and the death of my little sister (among other things) were enough to disprove the existence of a loving God. As I got older and learned more about the origins of religions (the reasoning and cultural history behind belief systems), I became less mystified and more aware of man's role in the creation of rituals and rules. Even now, it turns me off when I think about the corruption and bloodshed that has occurred and still occurs in the name of God.

The night of my accident I believed I was going to die and it terrified me. When I was face down in the water, unable to move and could barely see because of the darkness, I accepted the fact that my life was about to end. That night was the first of several nights in which I almost died (due to high fevers). It was during those first few weeks that I first felt the terror of not knowing what would happen if I died. Before my accident I would have said, "You die and that's it. Heaven and Hell are just fairy tales men made up to teach morality." Words are easy to say when you have no experience to back them up. Once I actually experienced coming so close to death, it's as if a switch turned on inside. The tiny flicker of doubt of "what if" has pushed me to find answers. When I do die, I don't want to find out I was wrong. Some might call it "guilt" or "fear," but regardless of my motives, I have felt the need to work on, or develop some sort of faith in God.

Now, I guess I'd be classified Agnostic. I've come to believe in some sort of higher being, but I'm not sold on any one religion, or name for God. Here again, logic steps in and makes me think that if there is a God, it created all of us and so why should it care what name we call it by? My religious friends all have arguments as to why it has to be their God, but so far I'm just convinced I have to be a good person and love my fellow man. When I describe a person as "religious," I mean someone who believes in a specific God/Gods and lives their life according to the specific rules of said God/Gods. I don't think someone has to necessarily be church going or radical to be religious.

On one hand, I envy my religious friends, because their religion gives them peace of mind and security in knowing that there is a certain purpose or plan for their life. On the other hand, I feel suffocated by the thought of having to buy into one group's set of beliefs. I don't like the thought of only a select group of people (worshipers) reaping the benefits of God, while the rest of humanity is doomed. I don't know that I'll ever be able to understand that mind set. Why should children, ignorant people or people that lived before a specific religion existed be punished for a choice they were never given? I'm trying to keep an open mind, but I can't even begin to trust in a God that would punish 99.9% of the beings it created. Why would God create us only to pit us up against one another? Who is to say which group is right? Even religions that are similar can't get along. I mean Jews, Christians and Muslims all worship the same God of the Old Testament and yet, still have been willing to kill one another over technicalities. The thinking of most modern organized religions keeps me from getting involved because it often tends to be black or white, with little room for thought or questions. Why did God bother to give me a brain if I'm only meant to follow blindly like a robot? Why give freewill if everything is already planned? So many people tell me that my accident is part of "God's plan." Doesn't that imply that I was forced to break my neck; that I never had a choice?These are the types of questions that make it hard for me to have faith.

I'm taking the time to read/learn about all different religions in my search for answers, as well as my desire to understand why people think the way they do. I'm interested in knowing what motivates people to believe. I'm especially interested in knowing how/why people that have faced horribletragedy or overcome tremendous obstacles have faith and if/how it impacts their ability to cope. I think having a stronger faith would give me more mental strength to keep moving forward. I'm met with the paradox of wanting to build faith, but not having much faith as a foundation to build from. I find it funny that I ask God to help strengthen my faith. It's as if I'm asking God to help me believe in him/her, just in case he/she actually exists. How does faith get stronger when you never receive any answers or proof to justify your questions? It's a riddle I find very difficult to deal with.

Of all the religious people in my life, I'm curious to know what factors influenced them in deciding which religion to believe: What factors make them believe in it?; How or why they think their religion is right and if they believe other religions are wrong?; What benefits do they feel they get from having faith?; Do they feel their questions are ever answered, if so how?; What proof, if any, do they feel they've seen that has validated their belief system?; What do they think about death/dying?