I just watched the HBO documentary, "How To Die In Oregon." It is a film about the debate, over whether or not people in the United States should have the right to "die with dignity," through physician assisted deaths. The documentary crew follows the lives, and deaths of several individuals, and their families. It presents clear arguments for why the right should be given to every citizen, and gives a very intimate view into the lives, and decision making process of the people involved, and what the process is like, in the state of Oregon. It also discusses opposing views, and the struggle involved, in getting legislation, like that in Oregon, passed in Washington.
One of the people the documentary follows, is a woman named Nancy. Nancy's husband had passed away, from cancer in his brain and spinal cord. At the time he was diagnosed with the illness (around 2006 I think), they were both Washington state residents. There was not much that doctors could do for him, in terms of treatment, and his prognosis was very grave. The disease progressed rapidly, and he lost his ability to care for himself. He suffered horribly, both physically and mentally, due to his degenerative condition, and his loss of freedom, and independence. He hated needing to be cared or, and wanted a peaceful, dignified death. At the time however, physician assisted suicide was illegal in his home state. He inquired about moving to Oregon, because he knew it was legal there, but his doctors told him he wouldn't be alive long enough to be able to establish residency there, or be able to give himself the lethal dose of medicine. He resigned himself to staying in his state. His wife Nancy described his final days being filled with pain, and suffering. One of his dying wishes, to her, was to work towards making physician assisted death legal in Washington, so that others wouldn't have to suffer the same way.
Nancy worked tirelessly, volunteering to speak, giving interviews, and making phone calls, to share her husband's story with the public, and to help raise awareness, and support, for the "Death With Dignity Act," which eventually passed, and was instituted in Washington, in 2008. During one of the many speaking engagements the documentary chronicles, the interviewer asked Nancy something to the effect of, "Death with dignity, the other side would call it assisted suicide. Is it assisted suicide?" She replied, "No. It's offense to me, to call it a suicide. Suicide is something someone does, who is otherwise physically healthy, and has their life ahead of them, but is clinically depressed and does not want to live." In another segment, she explains to a crowd of people, that although she and her husband were both raised Catholic, he (and obviously she agrees) didn't think it was right for the government, or any religious leader, to dictate how much someone should have to suffer. I agree with her opinions, whole heartedly.
The documentary discusses the Hippocratic oath, that doctors take, to "do no harm," and presents arguments from both sides. The film is clearly "pro" euthanasia rights, however it does offer examples, and give and take dialogue, from both sides of the issue. Some of the opponents to physician assisted death, claim that enacting such laws, is essentially giving the government the power to classify who is "fit" to live, versus those whose care might seem otherwise burdensome, or costly. I think this line of thinking is completely misguided. No one is saying "everyone with such, and such diagnosis, should be euthanized."
Giving citizens a dignified alternative, to assured suffering, has nothing to do with placing judgement on individuals. Everyone should have the right to determine what he/she considers to be a worthwhile life. Not everyone with a terminal diagnosis would choose to cut their life short. Not everyone that is disabled finds being dependent on others as painful, humiliating, or degrading. Everyone has their own unique threshold for suffering, and what he/she might classify as a life worth living. The point is, those people who do have a terminal illness, or incurable chronic illness, should have the right to determine when they've suffered enough. We as society, as loving, compassionate citizens, should recognize that in some cases, there are no medical answers or relief to suffering, but death itself. We should not demonize people for not wanting to suffer, or doctors for wanting to help ease someone's suffering.
If doctors have no methods to ease someone's physical illness, and that person is guaranteed to have a future filled with crippling limitations, lack of independence and/or physical suffering, than in my opinion, it is DOING HARM, not to offer a peaceful alternative. It is not right to say, you must suffer, because we can't help you. If death is a certainty, why prolong the suffering, and poor quality of life?
The documentary shows a man named Randy, dying from prostate cancer. In the film, he talks about his outrage over receiving a denial letter for more chemotherapy. Randy had already had several doses, but the treatments had been ineffective. He was too poor to pay for the treatments out of pocket, and the state of Oregon was refusing to pay for more treatments, because based on his diagnosis they felt that further treatments would only be futile (aka a waste of tax payer money), and were only offering him palliative, or "comfort care." He showed the rejection letter, which outlined the comfort care measures, that he COULD qualify for, given his condition. In the list, was the option of physician assisted death. He was completely irate, accusing Oregon of "putting a price on his life", and felt as though he was being pressured into dying. After going public with his story, the state agreed to pay for more radiation treatments. Despite treatment, he died a month later.
Giving people options, is totally different than imposing something on people. I don't think Oregon was wrong for denying Randy treatment. Some cases are lost causes. I receive all my medical benefits through the government, (Medicare and Medicaid) and believe whole heartedly that the government has the right to approve, or deny treatment, if they have clear evidence that it is unnecessary. As it is, there is a ton of price gauging, abuse of the system, and wasted money.
A perfect example, in my life, is receiving physical therapy. Due to my injury (C4/C5 complete), I was left completely paralyzed, with no hope of recovering any sensation, or functional ability, below my injury level. Directly after my accident, I received three months of inpatient acute, physical and occupational rehabilitation, and then six months of outpatient subacute rehab. For the first year and a half, after my accident I lived in and out of the hospital, and nursing facilities. During my stay in the nursing home, I received PT/OT five days a week (about a half hour of range of motion stretches, and exercises, done with the assistance of a physical therapist). Once I moved out, into my own apartment, the state paid to have a PT/OT therapist come to my home and teach my aides how to do range of motion exercises. I have been living here for over four years, and have only had PT/OT come to my home twice. The government will not approve me for outpatient PT/OT, because they feel, based on my diagnosis, anyone can be trained to do simple range of motion exercise with me. My prognosis, does not include "getting better," or regaining mobility, therefore they are justified in not wanting to pay for services that would be a waste of time and money. It doesn't make me angry. It makes sense.
I WISH I had a peaceful alternative to end this life. I don't think Oregon officials were wrong for denying the man in the film treatment. Clearly, he was terminally ill. Offering him the OPTION of a physician assisted death, was just that; an option. He had every right, not to exercise his right to die. In his opinion, his life was worth fighting for. That's all well and good, but there are cases where treatment is futile. If the tax payers are footing the bill, the government has the right to say whether or not they are going to pay. If you can afford it, and feel extra treatments are worth the cost,and risk, than more power to you. No one should tell you how you spend your own money (taxes & benefits aside). Just as, no one should force suffering upon others.
I HATE the life that my paralysis has forced onto me. I do not think it's right, or humane, to force me to live this way. If I lived in Oregon, or Washington, I would most certainly exercise the right to die with dignity. I'm not sure if I'd qualify, because I can't technically administer the medicine to myself. I'm a little fuzzy on the law, even after watching the film. They clearly point out that such legislation is feasible, because the patient is giving themselves the medicine, versus a doctor giving a lethal injection. However, everyone in the film, clearly had other people prepare the mixture, and help them. All they had to do was physically be able to ingest the concoction, by mouth. I could do that, but am unsure if my situation would be approved.
Most of society, and my loved ones don't like to admit the fact that paralysis (at high, complete levels- such as mine) is no different than a terminal illness. I have absolutely no means of self sufficiency. I am FORCED into accepting help for EVERY aspect of normal, daily life: to eat, go to the bathroom, dress, bathe, etc. I have two options: accept help and prolong my life, and therefore my own suffering, or reject help, and suffer a long drawn out, painful death. That is an incredibly harsh, cruel position to be in.
I'm not saying everyone with a spinal cord injury, or paralysis should want to die, or that they should be euthanized. All I'm saying is that each case should be judged based on the individual, and his/her own definition of what is a quality life. There should be an alternative, peaceful way to end someone's suffering. The choice, and decision to exercise that option, should be left to the individual. Not everyone will choose to die.
I for one, would welcome a peaceful option. For me, being completely paralyzed has been hell on earth. I absolutely detest needing help, and having no privacy. My physiology, (having IBS) has complicated my situation, and creates a lot of pain, and discomfort. I'm forced into taking dozens of pills, and into enduring horrible treatments (like bowel program-where a nurse needs to manually stimulate my body into evacuating stool), that create as much discomfort as they alleviate, if not more. There is no cure in sight for me, and very little that doctors can do to get rid of the autonomic dysreflexia, I deal with on a daily basis. My tolerance for sitting is poor, and I'm left practically bed bound. I am literally a prisoner within my own body. Right now, my only means of ending my suffering, is to reject the help that is given to me every day. Rejecting help will ensure my death 100%, because I can not feed myself, or get something to drink, without assistance. I can not go to the bathroom, or clean myself. Without help, my death will be assured, in only a matter of time.
In other words, my only option of ending my suffering (which in and of itself is a certainty, given my body, and my condition) is to slowly starve myself to death, or hope to die from untreated infection. Both "options" will result in my death, but will most likely be very painful, and drawn out, and incredibly hard for my loved ones to witness. For me, the best "help" for me, would be a dignified death. I hate that I am so trapped, and so limited by the law. It pisses me off, that religious "morals" and belief systems are imposed on me, and force me to suffer. My life has come to a point, where living equates to suffering. The scale has tipped, irreversibly, to being a life of overwhelming suffering, versus overall good. I truly wish I had the right to die peacefully, and quickly. I'd take that option in a heartbeat.
The documentary also follows a woman, named Cody, who was dying from cancer in her liver. Throughout the film, it shows her with her family, and each of their perspective's about her choice to exercise her right to die. For a little while, she had a period of feeling good, and had outlived her prognosis. She knew that she had the pills, waiting for her, but she chose life. She explained that she knew she didn't HAVE to ever take the pills, if she didn't want to, but that she drew peace and comfort from knowing, that she could spare herself from eventual suffering. She knew she was going to die, either way, but she didn't want to let her illness bring her to the point where she could no longer care for herself.
Naturally, Cody's family was sad, that she was going to die, but they were also very understanding, and supportive of her decision to hasten her own death. She involved them in her thought process, and clearly outlined what SHE considered to be a quality life, and how far she was WILLING to continue to suffer. Thanks to her having the option to die with dignity, she and her loved ones were able to prepare for death, together. They were able to enjoy her last days together, and say their goodbyes to one another, while she was still relatively able to care for herself, and was able to die with pride, and grace. She was able to spare herself the suffering, of added pain and the humiliation, of needing to be cared for (I can relate to her feelings), and spare her family the cost, and the physical & emotional burdens of having to watch her suffer and have to care for her.
Some people can tolerate more pain than others. Some people don't mind being dependent. Some people aren't bothered by vanities, modesty, or pride. Everyone is different. Every case is unique. For those people, whose death is inevitable, without medical intervention, or for those of people living with incurable, painful conditions, there should be a humane alternative, to forced suffering. Giving people the right to die, is not the same as killing people. The choice should remain with the individual that is faced with the suffering. Suffering shouldn't be imposed, or expected, just because there isn't a cure, or viable treatment. We treat our pets more humanely, than we treat our fellow man. I agree with the right to die with dignity, and wish more people would open their eyes, hearts and minds. I wish more states would free their citizens from the oppression of religious beliefs, over law, and give citizens the right to decide how much/little suffering they are willing to endure, and give doctors the right to uphold their oaths, to help ease suffering; even when life itself is suffering.
- Posted using BlogPress from my iPad
Showing posts with label assisted suicide. Show all posts
Showing posts with label assisted suicide. Show all posts
Tuesday, May 31, 2011
Friday, May 6, 2011
The Suicide Tourist
I just watched a documentary, called "The Suicide Tourist." It's an very moving, powerful, documentary, chronicling the final days, and eventual suicide, Craig Ewert. The documentary takes place in Europe, and gives an extremely intimate view, of Craig's life, and death. It is a highly thought provoking piece, that raises many questions, about quality of life, and the right to die. Craig himself, is very articulate, and poses some strong arguments, for his decision, and his opinions, on living, suffering, and on dying. I think it offers an exceptional example of why people, OUGHT to have the right to "die with dignity" and demonstrates good arguments, for why euthanasia should be legal, here in the USA. On a whole, the documentary is very tastefully done, and an incredibly brave, and generous contribution to society, on the part of Craig, his wife, and his children. If I could, I would like to thank Craig, and his family, for their willingness to share his story. I have a high respect for his loved ones, in that they supported his difficult decision, and stood by his side (particularly his wife), while he carried out his wishes.
Craig and his wife, both American citizens, had moved to Europe, before he got sick. They had two grown children, and decided they wanted to travel, and live abroad. Craig, who had been a professor of computer science, got a teaching job in England, and he and his wife relocated. His wife started started studying for a Phd, in law, and they were enjoying living their new life together. Everything changed, when Craig started feeling weak, and ultimately was given the ALS (Lou Gehrig's disease) diagnosis, and told his best case scenario, was two to five years left, to live. Around six months, after being diagnosed with ALS , and his rapid deterioration in health, Craig decided he wanted to end his life.
He started doing research, and was disappointed to discover that physician assisted suicide, was only legal in three states (I know of Oregon & Washington). He became frustrated by the fact, that people expected him to just accept his fate, and feared more than anything, what life would be like, once he could no longer speak, or communicate. He feared becoming a prisoner, in his own body (which I feel I am- even though I can communicate- and know what it's like to be completely paralyzed, without speech, from my time spent hooked up to a ventilator) and doubted his life, or death would be as "peaceful" as third party accounts described. He brought up an excellent point, that just because a person is "still," to the casual observer, it doesn't mean that the person is at peace. Being trapped, with no way to communicate, and stuck with nothing but your thoughts, and hauntingly painful memories, is anything, but peaceful. I know from experience. It is hell, and pure torture.
Wanting to prevent further suffering, and speed up the process, of his inevitable death, Craig continued his search for a legal way to end his life, and discussed his viewpoint, feelings and fears, with his wife and children. Realizing that he was suffering, and death was fast approaching, his family respected his wishes, and supported him, in carrying them out. He ultimately found out about Dignitas, a clinic in Switzerland, which offers assisted suicide services, to Swiss citizens, and foreigners alike. Knowing he had to be able to swallow the lethal dose of sodium pentobarbital himself, and that his window of opportunity was closing (due to his degenerative disease, and the unpredictable nature of the illness), he set up his appointment, and was accepted, to receive their services.
During the filming of his four, final days, Craig talked about his reasoning behind wanting to commit suicide, and his opinions on it being illegal, throughout the UK, and much of the US. He very poignantly expressed the fact that, many people throw the issue of God, into the matter, as a leading factor, for why there isn't more support, for assisted suicide, and how it is ironically unfair, that "playing God" is seemingly only a matter of contention, when it involves ending a life (and suffering), versus saving it. He pointed out the glaringly obvious distinction, where doctors "play God," by saving newborn babies (through extreme medical intervention) and keep people alive, unnaturally long lifespans, through medicine, and machines, but that it's "ok" to "play God," when it preserves life. He pointed out the fact, that his respirator, had been "playing God," keeping him alive, and couldn't understand why it was only acceptable, to intervene in extending life, but unacceptable to end life, even when there is no hope of cure, and definite suffering present. I too, do not understand, the rationale, behind this unjust form of thinking.
The documentary discusses Swiss law, and says (which I've read in many articles) that because of the fact that euthanasia is illegal, in the UK, and most of the US, the Swiss government has seen a huge influx, in "suicide tourism," and that outside countries (namely the US & UK) have been pressuring Switzerland to reject foreign petitions, to die within their country. This scrutiny has made it difficult, for clinics like Dignitas, to accept any, but the most extreme, and most desperate of cases. Luckily for Craig, he met Dignitas' criteria.
I think it's a shame that people like Craig (and myself) are forced into living with incurable, extreme disabilities, essentially against our will. I can completely relate, to his suffering, his viewpoint on being forced into dependence, and his fears of feeling trapped, and hopeless. It is a shame, that anyone should have to fly half way around the world, and petition a foreign country, to die a dignified death. I think it is cruel, that our society (and the UK) would rather watch people suffer, who would otherwise be dead, if it were not for medical intervention, than to allow us, to choose what we can tolerate, and what we deem, is a life worth living. Why is it so wrong, to offer a peaceful death, to someone who has no means of living, on their own, to whom medical science can offer no cure, and who is, in his/her own opinion experiencing suffering? It makes me angry, that people like me and Craig have to leave the country, or slowly starve ourselves to death, or slowly die from infection, rather than be given a HUMANE, easy alternative, because other people (who have no clue what it's like to be in our shoes) think it's "right," or "wrong."
I know the pain, and loss, that Craig was faced with, and why he decided to end his life. I know, very well, the terror of being completely reliant on others, and the heaviness, of feeling like a burden. I too, know the sadness, and disappointment, of having to express feelings of wanting die, to the people I love, and the pain and guilt, that comes along with deciding I want to give up on life. I know the shame, blame, and guilt, that society at large, and religion, bears down on the individual. It is a horrible situation to be in.
I know what it's like to look into the eyes, of the people I love, and tell them that I feel my life is no longer worth living. I'm living through that pain, right now, and know how hard it is to let go, even though every fiber of my being is exhausted, and wanting to give in, my conscious keeps reminding me, of the pain my death will cause, and I wish I knew a way to avoid hurting the people I love, while at the same time ending my own suffering. I know how horribly frustrating it is, to be a prisoner, within your body. I'm trapped, exactly like Craig, and I understand his desire to escape.
I applaud Craig, for his courage, and his family, for their selflessness, and compassion. I don't think it's wrong, to want to die peacefully, when death is inevitable, and medicine offers no hope, of alleviating a person's pain, and all the future holds, is a life full of suffering. I wish I had a peaceful option; a means of escaping this life, that didn't involve added suffering, and putting my loved ones through a long, painful process, of watching me slowly die, day by day. I wish everyone could watch "The Suicide Tourist", and gain some perspective, on the fact that, sometimes the most humane, compassionate thing to do, is to offer a peaceful death, and to let go, versus sentencing someone (that would otherwise be dead anyway) to a lifetime of suffering.
Video- http://video.pbs.org/video/1430431984
Information about ALS-
http://www.alsa.org/about-als/what-is-als.html
- Posted using BlogPress from my iPad
Craig and his wife, both American citizens, had moved to Europe, before he got sick. They had two grown children, and decided they wanted to travel, and live abroad. Craig, who had been a professor of computer science, got a teaching job in England, and he and his wife relocated. His wife started started studying for a Phd, in law, and they were enjoying living their new life together. Everything changed, when Craig started feeling weak, and ultimately was given the ALS (Lou Gehrig's disease) diagnosis, and told his best case scenario, was two to five years left, to live. Around six months, after being diagnosed with ALS , and his rapid deterioration in health, Craig decided he wanted to end his life.
He started doing research, and was disappointed to discover that physician assisted suicide, was only legal in three states (I know of Oregon & Washington). He became frustrated by the fact, that people expected him to just accept his fate, and feared more than anything, what life would be like, once he could no longer speak, or communicate. He feared becoming a prisoner, in his own body (which I feel I am- even though I can communicate- and know what it's like to be completely paralyzed, without speech, from my time spent hooked up to a ventilator) and doubted his life, or death would be as "peaceful" as third party accounts described. He brought up an excellent point, that just because a person is "still," to the casual observer, it doesn't mean that the person is at peace. Being trapped, with no way to communicate, and stuck with nothing but your thoughts, and hauntingly painful memories, is anything, but peaceful. I know from experience. It is hell, and pure torture.
Wanting to prevent further suffering, and speed up the process, of his inevitable death, Craig continued his search for a legal way to end his life, and discussed his viewpoint, feelings and fears, with his wife and children. Realizing that he was suffering, and death was fast approaching, his family respected his wishes, and supported him, in carrying them out. He ultimately found out about Dignitas, a clinic in Switzerland, which offers assisted suicide services, to Swiss citizens, and foreigners alike. Knowing he had to be able to swallow the lethal dose of sodium pentobarbital himself, and that his window of opportunity was closing (due to his degenerative disease, and the unpredictable nature of the illness), he set up his appointment, and was accepted, to receive their services.
During the filming of his four, final days, Craig talked about his reasoning behind wanting to commit suicide, and his opinions on it being illegal, throughout the UK, and much of the US. He very poignantly expressed the fact that, many people throw the issue of God, into the matter, as a leading factor, for why there isn't more support, for assisted suicide, and how it is ironically unfair, that "playing God" is seemingly only a matter of contention, when it involves ending a life (and suffering), versus saving it. He pointed out the glaringly obvious distinction, where doctors "play God," by saving newborn babies (through extreme medical intervention) and keep people alive, unnaturally long lifespans, through medicine, and machines, but that it's "ok" to "play God," when it preserves life. He pointed out the fact, that his respirator, had been "playing God," keeping him alive, and couldn't understand why it was only acceptable, to intervene in extending life, but unacceptable to end life, even when there is no hope of cure, and definite suffering present. I too, do not understand, the rationale, behind this unjust form of thinking.
The documentary discusses Swiss law, and says (which I've read in many articles) that because of the fact that euthanasia is illegal, in the UK, and most of the US, the Swiss government has seen a huge influx, in "suicide tourism," and that outside countries (namely the US & UK) have been pressuring Switzerland to reject foreign petitions, to die within their country. This scrutiny has made it difficult, for clinics like Dignitas, to accept any, but the most extreme, and most desperate of cases. Luckily for Craig, he met Dignitas' criteria.
I think it's a shame that people like Craig (and myself) are forced into living with incurable, extreme disabilities, essentially against our will. I can completely relate, to his suffering, his viewpoint on being forced into dependence, and his fears of feeling trapped, and hopeless. It is a shame, that anyone should have to fly half way around the world, and petition a foreign country, to die a dignified death. I think it is cruel, that our society (and the UK) would rather watch people suffer, who would otherwise be dead, if it were not for medical intervention, than to allow us, to choose what we can tolerate, and what we deem, is a life worth living. Why is it so wrong, to offer a peaceful death, to someone who has no means of living, on their own, to whom medical science can offer no cure, and who is, in his/her own opinion experiencing suffering? It makes me angry, that people like me and Craig have to leave the country, or slowly starve ourselves to death, or slowly die from infection, rather than be given a HUMANE, easy alternative, because other people (who have no clue what it's like to be in our shoes) think it's "right," or "wrong."
I know the pain, and loss, that Craig was faced with, and why he decided to end his life. I know, very well, the terror of being completely reliant on others, and the heaviness, of feeling like a burden. I too, know the sadness, and disappointment, of having to express feelings of wanting die, to the people I love, and the pain and guilt, that comes along with deciding I want to give up on life. I know the shame, blame, and guilt, that society at large, and religion, bears down on the individual. It is a horrible situation to be in.
I know what it's like to look into the eyes, of the people I love, and tell them that I feel my life is no longer worth living. I'm living through that pain, right now, and know how hard it is to let go, even though every fiber of my being is exhausted, and wanting to give in, my conscious keeps reminding me, of the pain my death will cause, and I wish I knew a way to avoid hurting the people I love, while at the same time ending my own suffering. I know how horribly frustrating it is, to be a prisoner, within your body. I'm trapped, exactly like Craig, and I understand his desire to escape.
I applaud Craig, for his courage, and his family, for their selflessness, and compassion. I don't think it's wrong, to want to die peacefully, when death is inevitable, and medicine offers no hope, of alleviating a person's pain, and all the future holds, is a life full of suffering. I wish I had a peaceful option; a means of escaping this life, that didn't involve added suffering, and putting my loved ones through a long, painful process, of watching me slowly die, day by day. I wish everyone could watch "The Suicide Tourist", and gain some perspective, on the fact that, sometimes the most humane, compassionate thing to do, is to offer a peaceful death, and to let go, versus sentencing someone (that would otherwise be dead anyway) to a lifetime of suffering.
Video- http://video.pbs.org/video/1430431984
Information about ALS-
http://www.alsa.org/about-als/what-is-als.html
- Posted using BlogPress from my iPad
Tuesday, March 29, 2011
"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
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
Friday, March 4, 2011
Taking Advice, Getting Feedback and Reasons For Sharing
I've gotten quite a lot of feedback, from my last two blogs, which I originally posted in the CareCure (online community related to spinal cord injuries)forums. Besides the wonderfully kind words of encouragement, and empathy, two of the key issues that were brought up were, possible alternatives to some of my most difficult obstacles and suggestions based on personal experience. I really appreciate all the ideas, feedback, life stories and concrete answers that people took the time to write. A few of the issues that I would like to highlight, and expand on reasoning, are the issuses of personal hygiene and my reasons for being so open about my life; even embarrassing and/or painful aspects of life, that most people find hard to discuss.
The number one, hardest aspect of living with paralysis for me is all of the highly intimate hygiene issues that I need help with. One of my biggest stressors is my bowel program (as itis for many people in my situation) and the only real alternative, would be to have a colostomy. This has been suggested to me, both recently and in the past. The thought of a colostomy bag is (to me) 1,000 times worst than BP. Just the thought of it depresses me. No offense, but it's definitely not for me Ideally, not having to go number two in the first place would be my solution. Unfortunately, that's not possible. The whole bodily fluid thing really disturbs me & grosses me out. I'd literally give up eating, if it meant I only had to deal with urine. As much as I love food, I gladly trade in a liquid diet, if it meant I could avoid needing to ever have a bowel movement. That's how much I hate the whole process, in general. I know it's a natural bodily function, that everyone does. I've just always been uptight about it. I guess you could say I'm somewhat "poopaphobic." I don't want to have to do it, or be around it, so the thought of having a bag of it strapped to me, is probably the worst case scenario I can think of. I've always been very private about bathroom & hygiene stuff, so being paralyzed is horrible. I find it disgusting and unladylike. I normaly would've never wanted to discuss it (and find it challenging to be so revealing), but feel it needs to be said, because the average has no clue, and would otherwise (and often does) take this fact for granted. I'm forced into having help with bathroom needs and it's never gotten any easier.
Sometimes I think being a woman, makes it even harder to accept & not be embarrassed. I don't know, but all my guy friends (able bodied & non) are way more easy going & less bothered by stuff like that. I mean let's put it this way, I dated someone for almost six years (also lived together for a portion of that time) and I never once passed gas in front of him. In the 24yrs I was on my feet I never once went number two in a public restroom. So you can imagine, having BP & a catheter is pretty much like hell on earth for me. Not to mention, as a woman, I have to also accept help every month with my period & other various feminine hygiene issues, that men just don't have. All in all, the adjustment to needing help with all personal care ADLs has been difficult.
Just the fact that so many people have to see me naked bothers me. I've always been self conscious and have had body imagine issues. My paralysis has not only made my body even more flawed, and less appealing, it also forces me into showing those flaws to numerous people (on a daily basis), over & over again. Its mortifying having to have someone else do stuff like brush my teeth, shave my under arms, clean my ears, help me blow my nose, acne, etc. I used to go to great lengths (as do most woman- doing my hair, make up, creams, shaving, plucking eye brows, getting manicures, exercise & diet) to look nice and to feel good about myself and feel as though I was pretty. It's not only embarrassing needing help with all personal hygiene needs, it also undermines my dignity and self worth. I'm forced into revealing every flaw and forced into having to ask for help, to look nice and correct imperfections, that under normal circumstances would be totally secret/private. It's all very challenging.
Like I've stated over, and over again, I'm just looking into all of my options. Living with paralysis has not been easy for me, and I'm tired of chronic sickness. This is not my first bout of serious depression, nor is it necessarily my last. Living with paralysis is a daily struggle. Choosing to fight to live the life that I have, is one of the few things that is still within my control. I will continue to do so for as long as I possibly can. I'm just the type of person that likes to think ahead, and take comfort in knowing that I'm in control of whatever aspects of my life that I CAN control. Paralysis has robbed me of almost all of my independence, so I'm forever seeking new ways to take back whatever control I can. My mind is one on the few assets I still have, and although it can at times be a curse (haunting memories and crippling grief) it has allowed me to be able to manage my own affairs and make decisions about my care, and overall quality of life. My mind continues to be the greatest source of pain, and although I realize that my perspective, way of thinking, and acceptance can change over time, I'm the only one that can make those changes. I struggle daily with the inner turmoil, of dealing with the life and choices paralysis gives me, and my sadness and desperate longing to have the type of life I once had. I realize it's a battle that only I can fight.
Last week I was chatting with an online buddy named Mariam about being so depressed lately. She's also a member of the AMFPA. We share a lot in common, in fact she's one of the few people on the planet that I feel like can truly understand where I'm coming from. We're around the same age, both artists and both suffer from similar spinal cord injuries. She's been injured for almost fifteen years now, and is one of those rare gems, in that she's somehow been able to keep it together, keep moving forward and find joy, despite being paralyzed. I had reached out to her, sending her a link to the CC thread, to get her point of view.
We had a long chat over Skype, and I really enjoyed our conversation. It always feels good to vent, but I particularly felt relieved talking with her, because I feel as though she really understands where I'm coming from, and has experienced much of the same struggles that I'm going through. She's amazingly positive and is seemingly much more open minded and receptive to going with the flow, and accepting her life with paralysis, much better than me. She'd probably agree with me, in saying that her current state of acceptance, and/or her strength and perseverance, as well as her current frame of mind, all took time, and that it might not make sense for me to beat myself up, for not being as strong as she is. She readily admitted to me, that living paralysis has also been a struggle for her, and that she also experienced a period of about two to three years (around her five year anniversary), where she was extremely depressed and in a similar dark state, that I'm currently experiencing. She was obviously, able to overcome it, and although she has her bad days, seems more well adjusted and happy with her life, living with paralysis, than I can ever imagine for myself, at this point.
During our discussion, I was expressing my wish for being understood, and how little I feel the average person really knows, what it's like to be paralyzed. I said I especially wished my loved ones understood how much I'm suffering, and how hard it is for me to live this way. Mariam then asked me, "What if they did understand? What difference would that make?" It was the first time anyone had ever asked me that, but I immediately knew the answer. I had to hold back tears to answer her, but managed to respond with a shaky voice, and tell her the answer that's been tugging at my heart and mind for a long time now. It's a two fold answer, that has been my driving force.
Firstly, I feel as though if people really understood what it's like to live a day in my shoes, they'd absolutely want to find a cure. I know in my heart, with 100% certainty, that anyone who could experience the grief, loss, fear, and sense of powerlessness that paralysis causes, that they'd want to fight with every ounce of energy they had to want to cure it. I feel as though, funding for research and emphasis on finding a cure to paralysis would take precedence and support would sky rocket, if more people really knew what it felt like to be paralyzed and to really comprehend how ethereal life is, and that their lives can change, as quickly as mine did, at any given moment. It is for this first reason that I pour my soul out to strangers and open my life up to the general public. As hard and as embarrassing as it can be at time, my goal is education. I want people to wake up, and understand what being paralyzed means.
Secondly, I feel as though if my loved ones truly understood my pain, and could experience all that I've been through, and all that I'm feeling, that they'd be able to let me go. This second part to the answer is what I told Mariam, and is what most often crosses my mind. I feel as though anyone that truly knew my pain, would be able to understand why I long to be free (by death, or by cure) and be at peace to let me go. I often think people expect me to keep marching forward, because they don't (and can't) know what they're really asking of me, and what a struggle it is every day. Although my loved ones might see my death as something horrible, and sad, I'm at a point where I'm tired of the daily battle and would welcome it. I just want to be free again. It doesn't mean I don't love my family and friends, and wouldn't miss them. They just don't understand how hard living can be. It's my hope that by sharing my thoughts and feelings I can help everyone (anyone who is willing to listen) to understand paralysis better and to motivate others to fight for a cure. Even if I never see a cure, I would feel at peace knowing I helped to prevent other people from ever having to experience all that I've been through, if I can inspire others to support finding a cure. Although I have little hope for a cure for myself, I do still wholeheartedly believe that a cure will be found some day. Again, I don't wish to upset anyone. I'm just being honest and sharing my thoughts, and where I'm at, right now in my struggle with paralysis.
Check out my buddy Mariam's website- I love her work!
www.mariampare.com
- Posted using BlogPress from my iPad
The number one, hardest aspect of living with paralysis for me is all of the highly intimate hygiene issues that I need help with. One of my biggest stressors is my bowel program (as itis for many people in my situation) and the only real alternative, would be to have a colostomy. This has been suggested to me, both recently and in the past. The thought of a colostomy bag is (to me) 1,000 times worst than BP. Just the thought of it depresses me. No offense, but it's definitely not for me Ideally, not having to go number two in the first place would be my solution. Unfortunately, that's not possible. The whole bodily fluid thing really disturbs me & grosses me out. I'd literally give up eating, if it meant I only had to deal with urine. As much as I love food, I gladly trade in a liquid diet, if it meant I could avoid needing to ever have a bowel movement. That's how much I hate the whole process, in general. I know it's a natural bodily function, that everyone does. I've just always been uptight about it. I guess you could say I'm somewhat "poopaphobic." I don't want to have to do it, or be around it, so the thought of having a bag of it strapped to me, is probably the worst case scenario I can think of. I've always been very private about bathroom & hygiene stuff, so being paralyzed is horrible. I find it disgusting and unladylike. I normaly would've never wanted to discuss it (and find it challenging to be so revealing), but feel it needs to be said, because the average has no clue, and would otherwise (and often does) take this fact for granted. I'm forced into having help with bathroom needs and it's never gotten any easier.
Sometimes I think being a woman, makes it even harder to accept & not be embarrassed. I don't know, but all my guy friends (able bodied & non) are way more easy going & less bothered by stuff like that. I mean let's put it this way, I dated someone for almost six years (also lived together for a portion of that time) and I never once passed gas in front of him. In the 24yrs I was on my feet I never once went number two in a public restroom. So you can imagine, having BP & a catheter is pretty much like hell on earth for me. Not to mention, as a woman, I have to also accept help every month with my period & other various feminine hygiene issues, that men just don't have. All in all, the adjustment to needing help with all personal care ADLs has been difficult.
Just the fact that so many people have to see me naked bothers me. I've always been self conscious and have had body imagine issues. My paralysis has not only made my body even more flawed, and less appealing, it also forces me into showing those flaws to numerous people (on a daily basis), over & over again. Its mortifying having to have someone else do stuff like brush my teeth, shave my under arms, clean my ears, help me blow my nose, acne, etc. I used to go to great lengths (as do most woman- doing my hair, make up, creams, shaving, plucking eye brows, getting manicures, exercise & diet) to look nice and to feel good about myself and feel as though I was pretty. It's not only embarrassing needing help with all personal hygiene needs, it also undermines my dignity and self worth. I'm forced into revealing every flaw and forced into having to ask for help, to look nice and correct imperfections, that under normal circumstances would be totally secret/private. It's all very challenging.
Like I've stated over, and over again, I'm just looking into all of my options. Living with paralysis has not been easy for me, and I'm tired of chronic sickness. This is not my first bout of serious depression, nor is it necessarily my last. Living with paralysis is a daily struggle. Choosing to fight to live the life that I have, is one of the few things that is still within my control. I will continue to do so for as long as I possibly can. I'm just the type of person that likes to think ahead, and take comfort in knowing that I'm in control of whatever aspects of my life that I CAN control. Paralysis has robbed me of almost all of my independence, so I'm forever seeking new ways to take back whatever control I can. My mind is one on the few assets I still have, and although it can at times be a curse (haunting memories and crippling grief) it has allowed me to be able to manage my own affairs and make decisions about my care, and overall quality of life. My mind continues to be the greatest source of pain, and although I realize that my perspective, way of thinking, and acceptance can change over time, I'm the only one that can make those changes. I struggle daily with the inner turmoil, of dealing with the life and choices paralysis gives me, and my sadness and desperate longing to have the type of life I once had. I realize it's a battle that only I can fight.
Last week I was chatting with an online buddy named Mariam about being so depressed lately. She's also a member of the AMFPA. We share a lot in common, in fact she's one of the few people on the planet that I feel like can truly understand where I'm coming from. We're around the same age, both artists and both suffer from similar spinal cord injuries. She's been injured for almost fifteen years now, and is one of those rare gems, in that she's somehow been able to keep it together, keep moving forward and find joy, despite being paralyzed. I had reached out to her, sending her a link to the CC thread, to get her point of view.
We had a long chat over Skype, and I really enjoyed our conversation. It always feels good to vent, but I particularly felt relieved talking with her, because I feel as though she really understands where I'm coming from, and has experienced much of the same struggles that I'm going through. She's amazingly positive and is seemingly much more open minded and receptive to going with the flow, and accepting her life with paralysis, much better than me. She'd probably agree with me, in saying that her current state of acceptance, and/or her strength and perseverance, as well as her current frame of mind, all took time, and that it might not make sense for me to beat myself up, for not being as strong as she is. She readily admitted to me, that living paralysis has also been a struggle for her, and that she also experienced a period of about two to three years (around her five year anniversary), where she was extremely depressed and in a similar dark state, that I'm currently experiencing. She was obviously, able to overcome it, and although she has her bad days, seems more well adjusted and happy with her life, living with paralysis, than I can ever imagine for myself, at this point.
During our discussion, I was expressing my wish for being understood, and how little I feel the average person really knows, what it's like to be paralyzed. I said I especially wished my loved ones understood how much I'm suffering, and how hard it is for me to live this way. Mariam then asked me, "What if they did understand? What difference would that make?" It was the first time anyone had ever asked me that, but I immediately knew the answer. I had to hold back tears to answer her, but managed to respond with a shaky voice, and tell her the answer that's been tugging at my heart and mind for a long time now. It's a two fold answer, that has been my driving force.
Firstly, I feel as though if people really understood what it's like to live a day in my shoes, they'd absolutely want to find a cure. I know in my heart, with 100% certainty, that anyone who could experience the grief, loss, fear, and sense of powerlessness that paralysis causes, that they'd want to fight with every ounce of energy they had to want to cure it. I feel as though, funding for research and emphasis on finding a cure to paralysis would take precedence and support would sky rocket, if more people really knew what it felt like to be paralyzed and to really comprehend how ethereal life is, and that their lives can change, as quickly as mine did, at any given moment. It is for this first reason that I pour my soul out to strangers and open my life up to the general public. As hard and as embarrassing as it can be at time, my goal is education. I want people to wake up, and understand what being paralyzed means.
Secondly, I feel as though if my loved ones truly understood my pain, and could experience all that I've been through, and all that I'm feeling, that they'd be able to let me go. This second part to the answer is what I told Mariam, and is what most often crosses my mind. I feel as though anyone that truly knew my pain, would be able to understand why I long to be free (by death, or by cure) and be at peace to let me go. I often think people expect me to keep marching forward, because they don't (and can't) know what they're really asking of me, and what a struggle it is every day. Although my loved ones might see my death as something horrible, and sad, I'm at a point where I'm tired of the daily battle and would welcome it. I just want to be free again. It doesn't mean I don't love my family and friends, and wouldn't miss them. They just don't understand how hard living can be. It's my hope that by sharing my thoughts and feelings I can help everyone (anyone who is willing to listen) to understand paralysis better and to motivate others to fight for a cure. Even if I never see a cure, I would feel at peace knowing I helped to prevent other people from ever having to experience all that I've been through, if I can inspire others to support finding a cure. Although I have little hope for a cure for myself, I do still wholeheartedly believe that a cure will be found some day. Again, I don't wish to upset anyone. I'm just being honest and sharing my thoughts, and where I'm at, right now in my struggle with paralysis.
Check out my buddy Mariam's website- I love her work!
www.mariampare.com
- Posted using BlogPress from my iPad
Monday, July 26, 2010
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
Sent from my iPad
- Posted using BlogPress from my iPhone
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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