Meeting With Fr. Doug

Well, I just met with Fr. Doug. He was very nice, and younger than I imagined. Most of the priests I knew growing up, were easily old enough to be my grandfather, or great great grandfather. We talked for about an hour and a half. I explained pretty much everything I've been thinking, and going through; lots and lots of tears. I showed him some of my still life paintings, I had laying around the apartment and gave him my card, to check out my website.

He said he could see a definite reason why God wanted me here, to use my gifts, to help others. I brought up the fact, that I feel I have been generous, and giving, but wonder how long I'm meant to keep living for the sake of others. I said, it's unfair, to hold me to the standard of Jesus, when Jesus had a clear knowledge, of his purpose, about his death, and about his resurrection. He said that's true, but that life isn't always fair. I explained that I don't blame God, for my accident, because I feel it is a product of my own freewill. He agreed, and said, although God doesn't create suffering, he can make good things happen, despite of it.

I understand, that I've been blessed with gifts, despite my severe disabilities. My gifts, of writing, and painting have helped me to cope, and teach others, about paralysis. However, the daily bouts of autonomic dysreflexia, and the grueling treatments, and degrading, embarrassing nature, of being totally dependent, makes living this way, seem so overwhelming, and often overshadows, the few positives in my life. I am thankful, to be able to express my feelings, but sometimes feel like my mind itself, is my own worst enemy. Being so trapped, with nothing but my thoughts, is often a punishment, within itself, because I'm constantly remembering what I had, what I can't have, what I miss, and what I want. The disparity between my old life, and my reality, is constantly weighing down on me, and makes it hard to be satisfied with what I've been left with.

He said I seemed to be much harder on myself, than others, and said I needed to find a way to forgive myself, for the accident. He said I had to start loving myself. I have heard those words many times, but am at a loss, at how to begin to do that. He said we're often much nicer to others, than we are to ourselves, and in my case, that's certainly true. He said God, is also more forgiving than I am, which I'm hoping is true. I know I didn't intend to hurt myself, but it was MY poor judgment, and MY action, that ultimately resulted in my injury. In many ways, I feel like a murder. I feel like the person I was, died that day, and I've been grieving for her, ever since. Paralysis has stolen almost every aspect of my old life; a life a loved.

I have lost my freedom to care for myself, my privacy, my dignity, my hopes, my dreams, my career, and the life I had built for myself. In many, many ways I lost myself. I miss the old Christina. I miss living my old life. I have no to blame, for the life paralysis had given me, but myself. How do you forgive someone that has stolen everything you loved, and held dear? How do you forgive someone that has robbed you of your health, and in turn, sentenced you, to a life a suffering? How do you forgive someone, that has robbed you of your potential, and your dreams, for the future, by placing extreme obstacles, and limitations upon you? I'm not sure if I CAN forgive myself.

Talking with Fr. Doug, did help provide me comfort, in that he said I had the right, to refuse extreme measures, like a tracheotomy, colostomy, or vent. Although, deep down, he's just a man, I felt relieved of the heavy burden, of knowing he (as a Catholic priest) recognized, that some situations are TOO much, and that God would understand, not wanting to preserve "life" to ANY and ALL extent necessary. Ever since those first few weeks, in ICU, my worst fear, has been ever having to be hooked up to a vent, again. I have a hard enough time, dealing with being reliant on people, I don't want to ever be reliant on machines again.

Fr. Doug said he thought a lot of my feelings, and dark thoughts are just depression, and suggested I reevaluate my medications. I said, I'd be open to trying. I already have tried a few. I had been taking Effexor, up until last year, and felt like it was no longer working. I asked my doctor, if I could try something different, and I started Pristiq. I've been taking it for at least six months. In the past six months, I've also added Remeron, and Xanax at night (both have been increased in doses a couple of times), to help with my insomnia. That said, I'm as down as ever, and in a very dark place.

I get a little annoyed, when people just write my feelings off as depressed, because I feel the true root of my sadness, stems directly from my paralysis. I'm not saying I'm not depressed, because I clearly am. I'm just saying that, no matter what medication I take, I will ALWAYS have a certain degree of depression. I pointed out, that anti-depressants, are not going to take away the key problems, that are plaguing me: the daily bouts of AD, my physical limitations, bowel program, or my catheter. I suppose, the right medication COULD make dealing with these things more bearable, but on a whole, I honestly can't envision ever being happy, or satisfied with living the way paralysis forces me to live.

After our long talk, Fr. Doug performed the anointing of sick ritual, and we said the "Our Father" together. I hope God was listening, and can offer me some relief, one way, or the other. In the meantime, I'll take Fr. Doug's advice, and talk to my doctor, about possibly trying to change my medications. At this point, I feel I have nothing to lose. I don't want to seem unreasonable, or unwilling to take suggestions. If I didn't want help, I wouldn't bother asking. I just want some peace, and to feel better, for a change. I do wish God would just cure me, or take me. I hate feeling stuck, in constant limbo.

Our conversation, hasn't really changed my mind, about not wanting antibiotics. I feel like, if God truly does want me alive, God certainly has the power to keep me alive, despite that decision. For now, I'm willing to experiment, and see if new meds, can offer any relief. I will also continue to pray, meditate, read, and search, to try and strengthen my faith. I will continue to be open, and honest with my friends, and family, and try to enjoy each day, the best I can. I'm really trying my best. I don't know what more I can do.


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Reasons For Suffering? Cruel & Unusual Punishment.

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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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/



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"The Sea Inside"

The other day I watched a very power movie, called "The Sea Inside." It is a Spanish film, that came out in the theaters, back in 2004. The story is based on the true, life story, of a quadriplegic man named Ramon Sampedro. He was injured in a diving accident (very similar injury to my own), off a cliff, nearby his home, into the sea. After his accident, he spent nearly thirty years fighting with the Spanish government, for the right to end his own life. The movie chronicles his uphill battle against the government, in a country, which is highly influenced by Catholic church. It depicts his day to day home life with his family, and caretakers, as well as the development of friendships, with two key women. One woman, named Rosa, is a local, single mother of two, who learns about his plight, through the media coverage of his case. The second woman, is a lawyer, who is battling with a debilitating neurological disorder, and decides to help him win his case, in hopes of securing her own to die, with dignity. Both women come to know, and love him, and end up helping him, in very different ways. In the end, Ramon gets his wish, despite losing the case, for the petition, to legally end his own life. The movie is extremely well written, acted, and touched my heart, and mind on many different levels. It is a story I can completely relate to, and Ramon's view points, and philosophy on life, are very similar to my own. If he were still alive, I'm sure we could talk for hours on end, about the cruelties of paralysis, and how important the quality of life is. I think if there's a heaven, we might become good friends. I'm interested to read his book, which was published shortly before his death, and am inspired by his tenacity and courage.

One of the things that struck me most about the movie, was the interpersonal relationships, between Ramon, and his family members, and the different dynamics each of them shared. It was insightful for me, and hit very close to home, to see the pain and anguish that his family members experienced, do to his injury, and the different way each of them coped, with having to help him, and also each of their varying attitudes, towards his wish to die. An especially poignant scene, is where his ailing father, who is normally very tightlipped, and somber, says something to the effect of "it's hard enough to lose a child; it's worse to watch a child, that wants to die." It's evident how much his father has suffered, watching Ramon suffer, and the feelings of frustration, and inadiquicy that must come along, with not being able to help his son heal. He is also torn between, his two sons, who argue bitterly, over Ramon's injury, and its impact on the family, as a whole. Ramon's older brother Jose, clearly feels resentment over his brother's life, and care being a burden and strain on the family, and yet he is the one most adamantly opposed to his brother's wishes to die. I found it interesting, that although he clearly blamed his brother for having a negative impact on his life, he seemed most affraid, and hesitant to let him go. I can't help but wonder, and compare my own situation, to Ramon's and think about all the stress, tears, and suffering my accident has caused on my family. Despite their spats, it was clear that Ramon was very loved, and well cared for. In fact his sister-in-law, Manuela, serves as his primary caregiver, and doted on him, as if he were her own child.

Ramon's case became a big media blitz, and caused a bit of scandal, given the influence of the Catholic church, and it's roots, into the heritage, and history of the Spanish goverment. One point in the movie, a Catholic priest, who was also quadriplegic, decided to make it his mission, to "save" Ramon, by going to see him, and try to persuade Ramon to change his views on living life, despite paralysis, and publicly suggested that perhaps it was just that Ramon lacked love and compassion, and that his petition for the right to die, was just a cry for help. Naturally, his comments both offended, and deeply hurt his family, whom loved him very much. Like myself, Ramon felt that this life is not a quality life. He believed like me, that it is a second best, compromise of the lives we once had, that strip of us of our freedom, and dignity. He was not happy with settling for life with paralysis, and neither am I.

It is not that I (or Ramon) don't appreciative the love and compassion my family and friends have for me, but love alone is not enough, to take away the physical and emotional pain that comes along with having to live such a limiting, unnatural way of life. Wanting to die, has nothing to do with lacking love, and/or support. Ramon's family was deeply invested and involved in Ramon's overall health, and well being. He had many interested, caring friends. I too have an abundance of love, and support. I am blessed with a strong network, of family, friends, and medical staff, to support me, and provide me with the best possible care, given my condition, and my limitations. I am grateful for the love, and interest my loved ones take in helping me, and being there for me. Unfortunately, love alone, is not enough, to counter balance the physical suffering, emotional trauma, loss of indepedemce, and losing the life I once had. There is nothing, short of a miracle, and/or cure, that can give me back (some of) what I lost, and make up for all the suffering I endure. Neither is very probable, or likely to occur, within the near future (or realistically speaking, even within the next decade.) I understand Ramon's wish to die, and respect his decision.

Its not to say I think all quadriplegics should die, or that their lives aren't worth living. I can only talk for myself, as did Ramon. He was not satisfied with having to endure the indignities that we're forced to face every day, every second. We don't get a break, and all the love in the world doesn't heal this type of injury. It doesn't take away the fevers, the cold sweats, the lack of privacy, or independence. Ramon's attitude was based around the idea, that each individual person has their own threshold for suffering, and while one person might find satisfaction in living dependent on others, and/or machines that, that low standard of quality of living should not be forced upon those of us that have to live it. After all, only Ramon knew what it was like to live in his shoes, and the personal hell that he had to endure, for almost thirty years, against his will. For me, and Ramon, paralysis is worse that being a prisoner. We are being punished, by being forced to live through unnatural means, against our will. That isn't fair, nor is it humane.

I can't speak for other quadriplegics, I can only speak for myself, about my struggles and the physical, and emotional impacts that paralysis has had on my life. I don't judge people who want to live this way, by calling them crazy, for giving in, for settling, for enduring, despite all the pain. I only know what I lost, what memories haunt me, what standards I hold myself to, and what brings me joy and fulfillment. It's easy to judge, when you don't have to deal with a fraction, of what I (or Ramon) went through, and in my case, continue to endure. No one has to sit every day, battling my inner deamons, frustration, disappointment and disgust, over the way I'm forced to live, but me. I think everyone should have the right to determine their own level of worth, and value, in terms of living, versus suffering. Let me worry about my own soul. Let God be my judge, instead of presuming his/hers/its purpose for my life.

Unlike Ramon (who cleverly had a chain of people prepare him a glass of water, mixed with poison, which he ingested, through a straw, on camera), my conscious would never allow me to jeopardize someone else's freedom (by making them criminally liable), or share the burden of the responsibility, for my death, by asking friends, or loved ones, to carry out, my wish to die. If/When the time comes, that I've reached my threshold, and can no longer continue to suffer, as I am, I will choose to excersise my right to refuse nutrition/hydration. It will not be quick, like Ramon's death. It will most likely, be days, or weeks, of slowly waiting to die. Although it might be painful for my loved ones to witness, it is the only option, that safeguards my loved ones, and keeps all the blame with me. Personally, I don't view my refusal of help, as suicide, rather the natural progression of nature. I feel as though my life is being sustained through artificial means, and do not find joy, or quality, in the lifestyle that paralysis has forced on me. I don't see my refusal of nutrition/hydration, any differently than my refusal to want to be hooked up to a vent, feeding tube, colostomy, or any other artificial life support. Right now, people act in place of machines. Either way, I'm unable to fend for myself, and would have died long ago, if I "left my life into God's hands." I think it's bad enough, I'm forced into a corner, where my only options, are to accept this low standard life, full of chronic illness, and no cure in sight, or have to starve to death. We treat our pets more humanely, and like Ramon, it really pisses me off, that God & religion, have such a strong influence, over laws, in a country where church & state, are meant to be separate.

During his campaign to die, Ramon befriended and fell in love with one of his lawyers, Julia. She was suffering from a degenerate neurological disease, similar to MS, and in my opinion, used Ramon's case, to give herself peace of mind, and as a selfish means, to try and use Ramon's case (in the event the government granted him permission, to die by lethal injection) as a precedent, to be able to end her own life, with dignity, before her disease effected her ability to reason, and/or memories. Whether intentional or not, and despite the fact that she was married, she toyed with his emotions, and even went so far as to help him write, and publish his book, and promised him that'd she'd personally help him carry out his wish to die, and die alongside him, once his book was published. Instead, she backed out of the deal, by letter, leaving Ramon, more heartbroken and suffering, than before she met him. Ultimately, it is a local woman, named Rosa (who fell in love with him, became his friend, around the same time period as Julia), who agrees to take the pivotal part, in helping Ramon, realize & carry out his plan to die. It is ironic, that during their first meeting, Rosa goes to meet him, in hopes of inspiring him to find a reason to live. Over time, she came to love and respect him, and finally understood, that the most loving gift, she could give him, was to recognize his suffering, and respect his wish to die.

Like Ramon, my wish is for people to understand how much I'm suffering, and to also respect my wish to NOT want to live THIS way. It is not a normal way to live. It is not easy, being 100% dependent on others (I find it frustrating that some people could accept & respect my wishes, to not want to be dependent on machinery, but yet expect me to accept being dependent on people). Being dependent on others is in many ways harder than being dependent on machines (which I have been), because there is shame, guilt, and judgement, involved in having to reveal yourself and be cared for by people. It is degrading, embarrassing and humiliating to have to be bathed, clothed, and fed, like a baby. It is extremely hard having to accept help, and share your private, personal space, when you have lived and are accustomed to being, an independent, self sufficient person.

Ramon was right, in that "this life has no dignity." I don't think that it's fair that such a low quality standard of life be forced upon people. I think people SHOULD have the right to die with dignity, and peacefully, if all life offers them, is a life of chronic illness, and suffering. People with incurable, debilitating diseases, shouldn't be forced into living UNNATURALLY long life spans, just because there are resources and means available to extend their lives. People like me & Ramon, should have a humane option, out of being otherwise, prisoners in our own flesh. I'm not saying that everyone in my shoes would chose to "opt out," I'm just saying that sometimes ending a life to prevent prolonged suffering, is more humane, than forcing someone who would otherwise be dead (because they can't care for themselves), to live and suffer.

My hope is that, if I do choose to one day stop accepting help, that those people closest to me understand my reasoning, respect my decision and know that I tried to live THIS life, for as long as I possibly could, for their sake (I do not go through all this Hell for myself. That point has come, and gone, a very long time ago). I hope that my loved ones will forgive me, and know that it is not for lack of love, that I want to leave them, but out of exhaustion and being tired of suffering. I wonder if Ramon's family have forgiven him, and have been able to move forward without him. I wonder how well, or poorly they coped with his death, despite knowing his wishes, and witnessing his suffering. I wonder if there is a heaven, and a God, if Ramon is there, beside him/her/it. I think if God exists, he/she/it will weigh the suffering, compassion, and generosity, of people like myself, and Ramon, and consider the amount of good a person has done, against the bad, and that a loving, all knowing God would forgive people, in our situation, for wanting to leave THIS life behind.





- Posted using BlogPress from my iPad

Shitty Day

Today has been a very shitty day, in every sense of the word. I hate to resort to vulgarities, but I feel as though it is the only word that can appropriately express the level of exhaustion and anger that I currently feel. I've been struggling more than ever to keep my sanity, and keep pushing forward, and today is a classic example, of the overwhelming tragedy and frustration that paralysis has thrust into my life. Despite my best efforts, I'm forever left feeling like a prisoner within my own flesh, and wanting anything to escape. I feel the need to share today's events, so far, to highlight the ugliness of paralysis, and shine a light on many reasons why living with paralysis has been, and continues to be so challenging for me. I'd challenge anyone to live through a few days like today, and still be able to be joyful and find motivation for wanting to keep living, paralyzed.

Today started like many mornings have, since my accident; sleepless and in pain. I spent the better part of last night uncomfortable, with cold sweats, chills, and mystery chest pressure, keeping me awake. I lie in bed trying to find comfort in the only position that doesn't hurt my shoulders (on my back- which is never how I used to sleep), and toss and turn my head, from left, to right, and back again. All the while, my mind is racing at top speed- apparently, the only speed I have- and I'm trying my best to ignore my discomfort. It's amazing how uncomfortable I can be, despite that fact that I can't actually feel most of my body. The little I can feel is full of annoyances, and the littlest of movements can trigger a leg spasm, move my hair out of place, create an itch I can't scratch, tense up my arm, or any number of stupid little things, that I can try to ignore, or call someone for help. I end up ignoring about half of my impulses, out of decency and consideration for my family/aides. Either way, most every night is a restless night, full of inner turmoil and despair. I can't help but beat myself up, over my accident and cling to the life I had. All of my memories bring with them a certain amount of grief, and I have yet to find a way to let go of what I lost (in both potential for the future and in reality). I spend most my nights trying to distract myself from negative thoughts, and find enough peace to fall asleep. Unfortunately, even sleep is not an escape, as many nights are filled with bad dreams, that make waking up seem somewhat better. I pray and pray, and ask God for a cure, to take me, and spare me the suffering, or at the very least, give me some measure of understanding, as to why my life has to be so difficult. In that respect, last night was the same as every other night since my accident; no answers and little sleep. Once I finally did manage to fall asleep, it was nearly 9am and my nurse was already on her way.

My nurse arrived around nine thirty, and so began my bowel program, most certainly my most hated aspect of life with paralysis. Bleary eyed, sick to my stomach, and depressed to be starting off my day in such a horribly violating way, I say nothing as my mom and nurse begin to strip off my adult diaper (wonderfully sexy garment) and roll me on to the sling. Next, it's time to get pumped up into the hoyer lift, and take the adrenaline filled ride, across the room to my most hated piece of furniture, my commode. It's impossible to explain to fear and mix of sensations that go through my mind, as my body is suspended in mid air, with no means of stopping myself from falling, or way to brace myself for impact. The hoyer lift makes me feel like I'm floating through the air (not in a good way), and unless you are paralyzed, it's hard to imagine how terrifying a small "ride" can seem. It is one small aspect of life that I've learned to tolerate, and although it makes me on edge, once I'm safely strapped into my commode, or landed in my wheelchair, it's not a big deal, and something that makes caring for me easier on my family/aides. As scary as it can be sometimes, it beats getting picked up and carried, which is usually more painful, and more dangerous, for everyone involved. Once I got strapped into the commode, the nurse wheeled me into the bathroom to begin the bowel regime. It's an awful necessity, that has never gotten any easier to deal with.

The only comparison I can think of, to accurately describe my feelings toward bowel program is rape. Although I realize that is a very strong word, with very negative connotations, hear me out. Before my accident, I was a very self conscious person (still am) and had many issues regarding the bathroom (still do). I was very private and couldn't stand the thought of using public restrooms, outside of my home, and a very few select friends' home to EVER "go number two." I can count on one hand the number of times that in almost TWENTY FIVE YEARS of my life on my feet that my IBS forced me into the shame and embarrassment of violating my own code of bathroom conduct. I find everything about poop, and feces related actions (aka-passing gas) humiliating, unladylike, and disgusting. If I had a choice, I'd negate the whole process all together, and have said many times, to many doctors, that I'd gladly trade in food, for a liquid diet, if it meant I could not have to "go" again. Obviously, that is not and option; I must eat and therefore poo. Having a spinal cord injury has made my worst fears a reality. It is truly Hell on Earth. Not only am I forced into revealing ever flaw, and every inch of my naked body, I'm forced into being violated on a near daily basis. Incontinence, and the anxiety over accidents, practically rule my life. I feel shame and embarrassment having to have other adult human beings not only acutely aware of my bodily functions, but up close and personal, in my face, and in my space, whether I want them there or not. I'm forced into accepting another human being, put their finger up my rear end, multiple times, every other morning, to stimulate my body into doing a process, it should be able to do naturally, and on my own. Personal space and privacy are luxuries that do not exist in my life. This morning, like so many other mornings, I had to make a "choice" to accept help, and accept having a bowel regime, despite my embarrassment, loathing, and revulsion to the process, because my only other alternatives are to become impacted, septic, and die, or have a colostomy bag strapped to my side (a bag full of the single most hated and embarrassing thing possible, in my mind). Do you really consider that a choice? I'm forced into accepting the bizarre, unnatural and repulsive, because the only choice, is to become sicker and/or possibly die. My paralysis shoves bowel program down my throat, and silences my voice, because there is no viable alternative. My body no longer answers to me, therefore I'm forced into answering to other people. Right now there is no cure. There's life; paralyzed. Take it, or leave it. That is my only real choice.

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 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.

It's fear that keeps me pushing forward, on days like today, when I'm worn down and feeling like I'm forced into accepting horrible conditions. This morning during bowel program, I felt horrible. I was clammy, with cold sweat, and shivering with cold (phantom feelings of cold, in limbs I can no longer feel, on the outside). I wanted to disappear and run away, but I couldn't. Bowel program is the only option available (that I'm even unwillingly up to considering), to give me any sort of regularity and combat against incontinence. It is not natural. There is no privacy. Embarrassment doesn't matter. This morning I had the added discomfort of nausea, which is the only thing equally horrible to bowel program. There I sat, half nude, strapped to a chair, over a toilet, bent with nausea, no means to stop it, or way to clean up, no where to hide, no relief, and all the while I'm enduring my nurse forcing my body to expel what I no longer can. In that moment of nausea I wanted to die. I prayed to God to take me. I couldn't imagine my life any worse. Doubled over with nausea, and choking back tears, I felt I needed to get back into bed, and hoped that lying down would offer some relief. While having bowel program in bed disgusts me way more than doing it over a toilet, it's something I was forced to accept, every night, for the first year and a half, after my injury. Although I hated the thought of having to do it, anything that might take the nausea away, in that moment, was worth doing. I asked my nurse to call my mom in for help, and they rolled me back into the room, and hastily began getting me ready for the hoyer ride back to bed. Just as they started to lift me up, and I felt as though I would vomit, my body decides to defecate, all over my bedroom floor. My mom, and nurse, highly aware of how much this would upset me, rushed around and try to contain the mess, while at the same time get me safely back into my bed. By this point, I'm numb. This is the point where the mind starts to short circuit, because it just can't handle any more trauma. As the nausea subsided, I landed in my bed, and my nurse began to tend to me, while I watched my mother scrub my beige carpet, for the next hour, filled with shoulder pain. What could I do but just lay there and accept it? It's mornings like today that make me want to scream in rage, in the unjustness of it, and makes finding a silver lining to life, near impossible. Who would want this type of life for themselves? The only motivating force in my life to keep going, is often the fact that I feel like I have no other choice. I have to take it, or leave it for what it is, no matter how unhappy I am, or how much I hate the "choices."

It's days like today that make me question God's existence and what he/she/it/they think about my life, and make me question why I should have to continue living. It seems so cruel to me, that society and my religion (the belief system that I was raised with) expect me to endure living with paralysis. I feel like a loving God would understand my suffering and understand my need to escape. Surely, my Earthly parents love me as much as God does, and yet I know if they had it within their power, they'd have healed me right away. I can't even ask them to help me end my suffering, because society rather keep me living, no matter the price I have to pay. It infuriates me that our society (based solely on our laws) values the "life" of 3-5 day old cells (blastocysts) enough to not want to use them for research that could potentially alleviate my suffering, and that of millions of LIVING people, just like me. Our laws dictate that they rather see those cells be thrown away, rather than help me. That's how little my suffering matters, how easy it is to look away. We treat our pets with more respect, compassion and dignity, than we do people like me (people with extreme disability and chronic, incurable illness). I don't get the option to die peacefully. I have to suffer. I feel as though it is irrational and hypocritical to ask me, to expect me to, to demand I live this way. How can we put such a high value on something that has no chance at ever living (outside a womb), and turn a deaf ear to people that live and suffer, every day? How is it that we are compassionate enough to not want to see an animal suffer (when we know there is no cure and prolonged suffering is inevitable), but not enough to allow me to die in peace, with dignity and respect? Instead, I'm asked to live an impossibly difficult life, that no one would ever choose for themselves. Why can't I have the same rights that my dog and cat have? I can't help but feel outraged, and desperately sad, at how trapped I am. I feel like I'm stuck with choices I don't want to choose, and no way out. So here I sit, forced to somehow keep moving forward, while keeping my sanity. It's a predicament I wouldn't wish on my worst of enemies.

Questioning Life & My Options

I've come to a point in my life where I find myself at a crossroad. I’ve been struggling the last five and a half years living with paralysis. It’s impossible to truly express the emotional rollercoaster ride that I’ve been on, since June 2005. I’ve tried my best to be open, about my thoughts and feelings. I’ve tried very hard to convey the magnitude of loss that I sustained, due to my injury, as well as the hardships of living with paralysis on a daily basis. Despite my best efforts, I feel like the average person can never understand how much I’ve suffered and continue to suffer. Words alone, aren’t enough to garnish empathy; sympathy perhaps. Even the people closest to me, that witness all that I have to endure, can never know what it’s like to live in my shoes. Although I often seek advice from other people living with paralysis, the pool of people that have/are lived/living through what I have/am, is very small. There aren’t many women in their early thirties with high level, complete spinal cord injuries. Even those that are out there, everyone’s life before their injury and at the point of injury differ. It’s near impossible to find other women that were injured in their mid twenties, that also lost careers, relationships, and everything else in between. While I appreciate the input and advice I’ve been given by injured men, I feel a huge disconnect and feel very isolated and lonely. The few women I have met, that I do consider able to understand me, are mostly all struggling just as much as I am, to cope with the insane amount of loss and change that our injuries have left us with.

Paralysis is so unique a state of being, that many times the things I experience (sensations, or lack thereof) have no comparison to when I was on my feet. Unless you’ve lived through it, you have no idea what it’s like. Anything you imagine is pale in comparison to what it’s like to live with it. There is no way to simulate the lack of feeling, on such as scale as a high level spinal cord injury. I’m not just paralyzed, I’m imprisoned. I’m cut off from 85% of my body. I can only feel my head, neck, shoulders, some of my outer arm (only up to & not including the elbow) and half of my breasts (top half). It’s as if the rest of me no longer exists in certain respects, like outside touch, or stimulation. Unfortunately, I do feel phantom pains, pressure and discomfort, that has no real rhyme or reason, and usually has no medical diagnosis, or solution. There is no way to fully grasp how it feels to lose all sense of independence and dignity overnight. My spinal cord injury stole my ability to be self sufficient in a matter of seconds, and I’ve been wrestling with how to cope with the void left behind, for almost six years. My injury has left me feeling constantly vulnerable, anxious, depressed, full of regret, lost, deprived and scared. While I’ve tried my best to remain positive, despite the bleak reality that a cure is most likely never going to be a reality for me, I feel justified in feeling the way that I do. I’ve made proactive steps ever since day one, to stay as positive and as mentally strong as possible, so that I could somehow keep moving forward, against my inner dissatisfaction of my life and the compromises I’m forced into making every day. I’ve sought counseling, gone to therapy, take an ever growing number of pills (anti-depressants, sleep aides and anti-anxiety meds), share with my peers, write, paint, pray meditate, distraction, etc. and feel like I’m running on vapors and running out of options. I’ve been pushing forward more so for my loved ones, than for myself, and find it increasingly harder to find reason, and/or motivation to essentially keep torturing myself.

It’s maddeningly frustrating to feel like I constantly have to justify for why I feel so down. I get so angry inside and just want to scream sometimes, “are you blind?!” to those people who expect me to accept all that I’ve lost and just to keep moving on with a smile on my face. Most of the time I assume it’s ignorance that makes people have unrealistic expectations. Reality is, most people don’t have a clue what it’s like to be forced into (out of lack of choice) accepting help: to need another adult to bathe, feed, and dress you, to have no control over bodily functions, to need a bowel regime and catheter, to need another person’s help with intimate hygiene tasks, like mouth care, shaving and menstruation, to need help for the smallest and otherwise seemingly insignificant tasks like scratching and itch, or fixing a wrinkle in your clothing, almost total lack of privacy, to be devoid of sensations and cut off from almost all physical intimacy and near total deprivation of sexual pleasure. Is it right for people to expect me (and people in my similar situation) to keep living this way, knowing full well that no one would ever knowingly choose to live this way? I mean, when someone is newly injured there’s always the hope of a cure. Once an individual is medically stable, they’re pretty much stuck living with paralysis. Once reality really hits, and/or hope for a cure fades away, what choices are we left with? Do I really have a choice but to cope the best as I can? Is it right to impose such a harsh quality of life onto someone? At times, I wish I wouldn’t have had that initial hope; that I would’ve given up when death would’ve come easily. Instead, I fought (and continue) to live a compromised version of my old life. It just never seems to get any easier. In fact, coping has gotten progressively harder, and my hope for my old life has faded away. I’m nearly always sad and feel trapped, with few options.

Since my injury, I’ve thought long and hard about quality of life, and about death. I’ve had to. I’ve put my wishes down in my living will, and often wish I would’ve seriously considered what I deemed as quality, before my accident. If I had the living will I have now, at the time of my accident, I would’ve spared myself the last five and a half years of pain. After the trauma and sheer terror of my first year, post accident, I know for certain that I never want to live reliant on machines. I feel it’s bad enough to be completely reliant on people and medication, let alone needing a ventilator, or treatment like dialysis. I’ve been on a ventilator, completely paralyzed. It was a hell on earth that I never want to relive. As scary as death seems to me, it offers the hope of eternal life, or at the very least, an escape from the chronic sickness and emotional pain that I feel every day. Although, I have mixed feelings of sadness for my loved ones and fear, for myself, I find myself contemplating my own mortality on a daily basis. What options do I have? It’s not so easy as just saying, “I give up.” If that were the case, I’m sure many people that are living with paralysis would not be here. At this point, my future seems bleak and it’s hard to be in the dark state that I’m currently in.

There are like I said earlier, people out there that do have a better understanding of my situation, and are somehow able to surpass all of obstacles of paralysis and find happiness. So then I begin to wonder if I’m just weak, for not being able to find joy, and for being so unhappy. Of the people that I know that are living with paralysis, I can’t help but wonder how it is that some of them have continued to try moving forward for decades. I don’t want to live into my forties, if it means I’m still living in a chair. However, I find “giving up” takes perhaps more courage than just scraping by. What are my realist options? I have the right to refuse nutrition, hydration, medications and treatments. What does that really mean? I feel like a lot of my initial strength to fight to live, came out of ignorance and denial of what my life would be like. I’m at a point where I feel like I’m on the verge of going crazy, and I don’t want to choose to die out of ignorance either. The process I’d have to endure, in order to die, might be so unbearable that I might be tempted into backing out, and fight to live again. It’s a horribly sad thought that I’ve thought about many times. Understandably, most people don’t want to contemplate death, or indulge my suicidal tendencies, by giving me straight answers. Then again, up until recently, I was not seeking out specific answers.

I feel as though I’m battling myself, in finding reasons to keep moving forward. In the late hours of the night, I think about my life and the choices I’ve made. I beat myself up over regrets and find myself pleading and begging God to be merciful. Every night, for a long while, I’ve asked God (if he/she exists) to either cure me, or take me. Obviously, I’ve yet to get a response. I can’t help but wrestle with myself over morals and ethics. I wonder if giving up on relying on others is the same as taking my own life. The superstitious (or perhaps faith) part of me wants to know if God would consider refusal of help suicide, and what that would mean for my soul (if I have one). No one can give me concrete answers to those questions. All I know is that it is illegal for my loved ones, or medical professionals to assist me. Therefore, I can’t ask for an injection, or a handful of pills (a quick, peaceful death), without putting that person at criminal liability and/or horrible guilt. I know that if it were legal here (like in Switzerland) I could find it in myself to ask for help, but since it isn’t, I can’t and don’t expect anyone to ruin their own life, for the sake of ending mine. Therefore, my only real options are to refuse the treatments, medication and/or food and water that are keeping me alive. I am curious to know the medical repercussions of such a decision would be and what I’d have to endure, if I chose to exercise my rights. What kind of death would it be, to starve myself of food and water? How long would it take? What would happen if I refused to continue my bowel regime and/or stopped taking my medication? Would those decisions cause a lot of physical pain? Would I qualify for palliative care, like hospice? Would I be entitled to morphine, or something similar, to ease the pain and stress of hunger, impaction, and/or whatever discomforts that refusing those things would bring? What means would be the quickest, least painful way? I did ask my doctor some of these questions, but only got vague responses. I think that’s mostly because he wants me to keep on living, but also out of lack of knowledge. So I’m left wondering if I can find the answers, and if so where? Although part of me feels like a failure, or weak for considering death, I feel like I have the right to know the answers to these questions.

I hesitated to even post this, as I'm sure there are many that might not agree with, or condone this type of dialogue, or conversation. I also know that this blog will cause my loved ones pain. In fact, I posted this on the CareCure forums first (about a week ago), in hopes of connecting with other people with SCIs, and giving myself a chance to gather some feedback from people in similar situations. I stirred up a decent response, and have been continuing to reply to the ideas, and comments that people have shared with me.

I’m just looking for answers. I don’t expect anyone to advocate the thought of giving up on life. I understand that there are many people that are fine with their lives, and living with paralysis. I also expect that most anyone who reads this will probably try and dissuade me from taking drastic measures and offer me I pep talk. I’m not even saying that I am giving up. I just want to know what my options are, at this point in my life. I realize that I’m at a very low point; that’s precisely why I’m seeking help. I don’t want to feel miserable, but I am.



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Why all the hate?

I'm getting tired of seeing people post stuff about the proposed mosque that is planned to be built near ground zero. I've seen almost nothing but negative criticism and felt I wanted to add my two cents.

Not all Muslims are terrorists. Yes, it is a fact that radical Muslims were responsible for 9/11. However, radical Muslims do not represent all Muslims. Muslims, Jews and Christians all share the teachings of the Old Testament and preach the same core beliefs. There are bad people in every group. Human beings are flawed, and prone to violence regardless of religious ideology. Religion is a powerful motivator and has been the scape goat of horrible atrocities throughout history. The Romans persecuted the Christians, Egyptians persecuted the Israelites, Christians persecuted the Jews, Christians fight Christians (Catholics & Protestants), it goes on and on. I find it shocking how many people have become biased towards Muslims since 9/11. I judged people on an individual basis before 9/11, and continue to do the same.

My Christian friends (I was raised Catholic. I'm not atheist, just currently undecided) have been the most opposed and vocal to building the mosque. Yet, no one seems to remember (or wants to point out) how many people have been killed in the name of Christianity. Do the Crusades, the explorers or the Conquistadors ring a bell? Not to mention, most of the Nazis were Christian. They killed a lot more than 3,000 people, so does that mean we should stop building churches, so as not to offend anyone?  Is it disrespectful to Native Americans or Holocaust survivors to build churches in their neighborhoods? Lots of contemporary murders are Christian, but you don't hear people calling Christians terrorists or treating them suspiciously. I really don't understand the double standard. The whole triumphalist attitude of organized religions is what pisses me off and makes it hard for me to believe in any one faith. I don't think I'll ever buy into the belief that good people will suffer eternal damnation, just because they called God by the wrong name. Every religious person thinks their belief is the right one, but that's no reason to stop others from practicing their faith. Our country was founded on religious freedom. The mosque is set to be built on private property, so the government should not have the constitutional right to oppose it. 

I think it's horrible that "Muslim" has come to mean "terrorist" to so many people. Calling all Muslims terrorists is unfair and no different than being anti-Semitic; bigotry is bigotry no matter how you slice it. It is unfair to lump good Muslim people in with extremists and radical ideology. Prejudice is ignorance, bottom line. The facts are: 1-all religions can be (and have been) perverted & miss used, 2-government & religion are separate, 3-NYC is one of the most diverse places in the world & all citizens should be free to worship without discrimination, 4-the people responsible for taking those planes down died that day, it's not right to punish an entire religious community for their crimes. The truth of the matter is, dozens of upstanding Muslim American citizens were also killed in the 9/11 attacks. Why has everyone forgotten them? The Muslim citizens in those buildings were innocent people, working and contributing to our society; they were not terrorists. The men that hijacked those planes were terrorists. Al-Qaeda are extremists and they have killed more Muslims, than any other religious group*. 

I just wish people could be more objective in their opinions and examine their own beliefs before judging others. Give people a chance to be good, instead of assuming they're evil.  Didn't someone say something like, "He who is without sin can cast the first stone"? 

Related articles:

1.http://www.huffingtonpost.com/sumbul-alikaramali/ground-zero-and-harry-rei_b_685282.html

2.http://www.independent.co.uk/news/world/americas/collateral-damage-630920.html

Controversy in Dying

I was watching CNN the other day and a story about a controversial billboard caught my attention. The billboard over looks Rt. 22 in Hillside, NJ. I grew up in Hillside and traveled on that stretch of Rt. 22 nearly my whole life. Naturally, it peaked my interest to hear what was going on in my old neighborhood. It turns out that the billboard is currently advertising for a nationwide organization (one of it's chapters is based here in NJ), called the "Final Exit Network." The group is primarily volunteer based organization, which provides information, counseling services and advocates for the right for people to die with dignity. The billboard that they are sponsoring is visually very simple, no pictures, just text on a plain black background, six simple words. The simplicity of the design makes a direct, powerful impact on the reader and it is stirring up a ton of controversy. The sign reads, "My Life, My Death, My Choice" with the group's website (finalexitnetwork.org) printed below.

I've read several articles on the story and in all of interviews I've read, the founder of the NJ chapter, Rob Levine admits that The Final Exit billboard is meant to stir up dialogue about a patient's right to decide his/her care. So far, it's doing a good job. Critics say it promotes death and suicide and some groups want it taken down (the local Catholic community, for example). However, if you take a minute to actually visit the organization's website, it's clear that they are promoting choice and advocate for patient's rights. The group does not assist people with suicide. It is their mission to provide information and counseling to people with chronic, incurable diseases or ailments. While they are somewhat unique in that they are willing to counsel people that are not necessarily terminal, all the patients they help have survived a life changing injury, have a degenerative condition (such as ALS or MS) or painful incurable disease. The group does not advocate suicide. They educate people about their rights as a patient, long term planning (like funeral arrangements) and legal documents like advanced directives and living wills. The group also helps patients to fight for their rights and ensures that the patients wishes are carried out.

Critics can say what they like, but there are several key factors they have failed to consider (or ignore) . Number one, be informed before you state your views. If half the people that the reporters interviewed (by pulling commuters over to the side of the road) actually looked into the organizations position, they'd learn that they aren't assisting in suicides. The billboard isn't directed at your average "Emo" teenager or middle-aged person with relationship, self esteem, financial or run of the mill problems. The message is not telling people to go off themselves, because they are depressed. The billboard is meant to get people thinking about patient rights and inform people of the choices we all have, under the law. Secondly, it is very easy for a young, healthy individual to pass judgement on someone who is ill. If you are healthy, you've never experienced what it's like to have chronic pain, lose the ability to care for yourself, be constantly in and out of hospitals, reliant on machines and/or medication to survive. If you're healthy there's no way you can truly understand the stress, anxiety and desperation that can come along with knowing that there is no cure, that you might never get better, or worst, knowing that your condition will only degenerate over time. Unless a person is in this type of situation, he/she should hold their tongue. Lastly, critics should recall that church and state are separate. While many people's religious faith might influence them into thinking euthanasia or suicide is wrong, they should be mindful that their religious beliefs should only determine how they, themselves choose to live their life. It isn't right to impose personal, religious beliefs onto the law. Contrarily, I think people should be aware of the options they have and be conscious of the fact that life can change in an instance; so you're better off being prepared. It is tremendously helpful having the peace of mind, that God forbid you should get sick, or injured, that the people who hold your life in their hands will make decisions based on what YOU want for your life, as opposed to what THEY feel you should do with your life. At the end of the day, you are the only one that has to live in YOUR shoes. I think it's a good thing, to make people consider their choices.

Euthanasia is illegal here in the United States and often a hotly debated topic. I'm sure most adults are familiar with the name Jack Kevorkian, made famous (perhaps infamous, as "Dr. Death") by his stance and facilitation of assisted suicides, for terminally ill patients. He was convicted and spent time in prison for helping over a dozen people end their lives. It was a highly publicized case, here in the states, and even spawned a movie (which I've seen), called "You Don't Know Jack," which starred Al Pachino, John Goodman & Susan Sarandon. It was his story that first introduced me to the concept of euthanasia (I was a senior in high school when he was convicted in 1998 and had heard media coverage throughout the 1990's) and forced me to seriously think about the topic.

Although it is a touchy subject in the US, it is not so controversial worldwide. Many American and Brithish citizens have turned to other, more liberal socities to ease their suffering. Countries like Switzerland, allow medically assisted suicide and therefore get an influx of "suicide tourism" annually. In fact, there is a recent independent film (still listed as "currently in production" by Point Grey Pictures) called "The Suicide Tourist," which documents two cases of individuals that traveled to Switzerland to end their lives. The film is said to follow an American man during his last days and a Vancouver couple, petitioning to die together as a couple. I'm not sure if the wife won the right to join her husband in this particular case, because she was said to be healthy (which, for the record I oppose). However, I know of similar cases, where couples (both ill) have sought, and succeeded in dying together, through assisted suicide. Both cases from the film took place at Digitas clinic in Zurich, where for a fee of about €7,000 you can be injected with a lethal dose of sodium pentobarbitol and die, quickly and peacefully.

Currently, the Swiss government is working on revising their lax laws, regarding euthanasia. As the law stands, it is perfectly legal to die by or assisting in euthanasia, as long as you don't somehow profit from it. Dignitas, of course, is a business (whether they claim to be non-profit or not) and the founder has made millions from helping people end their lives. A recent scandal involving urns that were found at the bottom of a Lake Zurich have put Dignitas under the watch of the government, which is currently investigating the situation. Other countries have also been putting pressure (England especially) on Switzerland to create stricter guidelines that would call for each case to be evaluated by two doctors, and limiting the criteria for acceptance (most likely only for terminally ill patients- prognosis of death in six months or less). The possible reform would also make it much more difficult for foreigners to receive assistance; something Britain is hoping for.

I first heard of Dignitas a couple of years ago. I came across a post on Care Cure forums (spinal cord injury network and online community) about a young rugby player (only a few years younger than I was at the time) who had ended his life through the help of Dignitas. The man had been paralyzed (high level, complete injury) in an accident and after two years of struggling, he had had enough. Shortly after his death, the British government launched an investigation into his parents involvement in his death and were considering to charge them with murder. The charges were ultimately dropped.

I was surprised at the mixed bag of opinions that I read in the forum thread. I couldn't help but empathize with the man and thought very highly of his parents respecting his wishes, enough to be present at his death. Some people in the forums expressed sympathy, while others were downright irate, calling the man a coward. I guess I shouldn't have been shocked at the difference in opinions, it's just that, I felt if anyone could understand the man's pain and suffering, it would be those of us living with paralysis. I understand not wanting to die as a personal choice and that some people's beliefs deem suicide as "wrong" or "sinful." Technically speaking, I often wonder if "giving up" is the same as committing suicide (or assisted suicide). If you choose not to live on machines, medication, feeding tubes or treatments, is that the same as taking an injection of poison? I don't think so. I don't think everyone has the inner strength or motivation enough to find reason or the will to live with a high-level, irreversible spinal cord injury.

I don't like to judge others, because I feel I don't know what the whole picture is, and I don't have to live their lives. I also don't expect anyone to deal with my paralysis. It's my burden alone and the people in my life choose to be there. However, I could never expect anyone to live like this, because quality of life is an individual determination and I don't think it's fair to hold someone else to my personal standards, or ability to cope. There have been many, many days that I wished I could "opt out," so to speak. I don't think that makes me any better or weaker than anyone else, because no one has to live my life, except me. Only I can know the full extent of pain and emotional trauma I've experienced over all the loss and changes to my life. Only I can determine if it's worth my effort to keep moving forward. Today I choose to keep trying, but there might come a day where I just can't deal with it anymore and I wouldn't want people to judge me. I have to fight just to live. It takes a lot of work, money and services to sustain my life and it's not a life I'm happy with. It takes a tremendous amount of inner strength to find reasons and purpose to want to live this way. I would hope the people in my life would respect the fact that I have struggled to live a very difficult life (dependent on others, medication, bowel regimes, losing my career, freedoms & dreams) to the best of my abilities and that if I chose to "give up," it would mean I truly had no will left. I often wonder what critics would say if they could live my life for a week (and not know if they'd ever be cured). I have a feeling most critics would change their tune in a heartbeat.

I've always held the opinion that the individual should have power over his/her own health and well being; death and suffering included. I feel it's very cold and callous to force or expect someone to endure prolonged suffering, especially when medical science can offer no cure or remedy. As a society who loves animals and give our pets rights, we "put down" animals that are suffering, because it's "the humane thing to do." Why then (other than selfishness) are we so inhumane to chronically ill people? Personally, I respect others in the choices they make regarding their bodies and their health. Since my accident and upheaval of my own life, I've been forced to think about my own choices and what I want for myself. Most twenty something year olds don't think about their own deaths and/or take any initiative in creating a will, advanced directives or funerary plans. Luckily, most twenty something year olds are fortunate enough to never need those types of documents or advanced planning.

Looking back, I wish I had taken measures to create legal documents that stated my wishes, in the event of a catastrophic event. Reality is, anything can happen, despite your age. Young people are normally complacent (or ignorant) about documenting their wishes and estate planning, because they feel they have plenty of time and can wait until they are old and grey to start worrying. The truth of the matter is, that you are always at risk of illness and/or injury and once you are legal adult, it becomes very difficult (legally speaking) for other people to settle your affairs or make decisions for you. In the event you can't communicate your wishes, people you may not want making decisions for you can step in and/or make decisions you wouldn't want. It's much better to be prepared, especially if you're out of the house and on your own, because there are many aspects of your life can that become effected by illness or injury. Expressing your thoughts aloud is not enough. It's worth the time and effort (as little as 20 minutes and less then $100- using templates like Legalzoom.com) to put your wishes in writing.

At the time of my accident I was twenty four years old. I was teaching full-time and living in my own apartment. Immediately after my injury I was rushed to the hospital, on the brink of death. I spent three weeks in intensive care, had three surgeries, multiple live threatening fevers and was on and off a ventilator. My family stepped in to make many decisions for me. It was an extremely stressful time for the whole family and created a lot of tension and bad blood between some people. My privacy was completely destroyed, in every sense of the word. My apartment was shut down immediately; all of my belongings rummaged through. My parents tried to handle all my bills & finances and eventually, I had to give them power of attorney. I had no spouse and since I was an adult my parents were legally bound as to what they could and couldn't access. Everything happened so fast and I was in shock for a very long time. At first, I was in denial about the severity of my injuries. As reality started to sink in, it was all so traumatic that I was not in a frame of mind to be handling any responsibilities, other than just fighting to stay alive. Looking back however, I wish many things had been handled differently, and that I could've played a bigger role.

Since then, I've regained all my power to oversee my own affairs and have put plans into place, so that if I should become very I'll, or die, there will be no guessing, no fighting and less stress for everyone. I have a will and advanced directives. The will outlines what I would like to be done with my material assets. I don't have much, but it is very important to me that the people I choose get what I would like them to have. I felt extremely powerless after my accident. I never want to go through that again, nor do I want tension among my loved ones (recall the Terri Schiavo case 2001-2005) or to put my family through the burden of having to make life altering (or ending) decisions.

I know what it is like to be dependent on machines to breath. I never want to experience that again. I've decided (and documented in my advanced directives) that in the event I can no longer breath on my own that I am not to be placed on machines. That means that I would most likely die, but I'm ok with that. Quality of life is more important to me than quantity of life. I see no reason to prolong my own suffering. I find no quality of life in living off of machines (personally speaking). Everyone's threshold for what they can tolerate and what they consider quality of life is different. That's why it's so important to seriously think about what you want for yourself and to document it. In all honesty, if I had a living will at the time of my injury I would not be alive today. I would not of wanted this life for myself. I still do not want this life for myself, but I am stuck with it, and feel I need to make the best of it. I'm already unhappy, but that doesn't mean I'm trying to die, or giving up. I just refuse to suffer through anything worst than my already bad situation. I don't see the sense in living on machines. Been there. Done that. No thank you.

Now that I have my wishes documented, it's extremely important that they're followed through. I have made it clear to my family and care givers that these documents exist. I have a special card with my identification to alert strangers as well. If hospitals don't know, they're going to try to do everything possible to keep you alive. It's important that they know what you want and that plans are already in place. In my advanced directive I've also spelled out what I'd like done with my remains. I'm donating my organs, would like to be cremated, do not want a viewing or funeral and expressly forbid anyone to keep my ashes. It gives me peace of mind to know my wishes will be carried out. Death is not a pleasant topic and sometimes hard to talk about, but it's an inevitable part of life. Every individual has the right to make certain choices about their care, in both life and death. Otherwise, you leave a very heavy burden on your loved ones, who most likely, would not want the enormous responsibility, if they had a choice. It's important that people know their rights and if exercised, that they are respected. I think more people should have an open dialogue with their loved ones and take the time to make their own decisions.

LINKS to related articles (if case you're interested in learning more about some of the things I mentioned):

Canadian couple-http://www.timesonline.co.uk/tol/news/world/europe/article6021947.ece

British couple-http://www.dailymail.co.uk/news/article-1199550/Famous-British-conductor-Sir-Edward-Downes-wife-die-assisted-suicide-clinic-Dignitas-Switzerland.html

Rugby player-http://www.telegraph.co.uk/news/majornews/3689907/Parents-of-rugby-player-in-Dignitas-assisted-suicide-will-not-face-charges.html

Billboard-http://wcbstv.com/local/right.to.die.2.1805186.html

BBC Dignitas coverage- http://www.bbc.co.uk/news/10461894

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