tag:blogger.com,1999:blog-1556371561007953336.post252781004642644786..comments2024-03-16T16:44:18.220-07:00Comments on Bad Cripple: Mourning for Christina Symanski: Better Off Dead?william Peacehttp://www.blogger.com/profile/00223601480542461802noreply@blogger.comBlogger41125tag:blogger.com,1999:blog-1556371561007953336.post-59149099280221434772012-03-18T22:35:46.659-07:002012-03-18T22:35:46.659-07:00Being a woman that's a c-7/t-1 incomp quad, I ...Being a woman that's a c-7/t-1 incomp quad, I feel she was not given enough support early on and lived in the past and what could have been with Jimmy that drove her to this tunnel vision of self annilation. I know the first 5 years are the hardest. Your body is like an alien prostetic to you to get used to. You need people to help you do all your personal care, but if you can get someone you feel comfortable with it makes it a lot less disturbing, but it's better than the latter, blood pressure spikes and searing head pain, possible death from lack of evacuation. The first 5 years I had the uti sweats, sickness, insomnia, and just wondering if it was all worth it, but after you get past the rough beginnings it gets so much better. I can now brush my hair and teeth without BP dropping and passing out! I feel you need a goal and positive reinforcement around you. It haunts me that she didn't get enough help from her peers, other people with the same disabilities, and couldn't accept what had happened to her and move on.It's been almost 15 years since my accident and I have accomplished a lot, including being crowned ms. wheelchair Kansas 2009 and serving on several boards to advocate for my peers. I have some bad days, and an occasional uti and fatigue, but I wouldn't have traded watching my family grow and all the great thingsI've experienced, good and bad, for the alternative.I just feel it was a great loss of someone who couldn't see the forest through the trees.Three Rivers Inc.https://www.blogger.com/profile/07944914159224346898noreply@blogger.comtag:blogger.com,1999:blog-1556371561007953336.post-85049457617881754202012-02-18T07:04:00.479-08:002012-02-18T07:04:00.479-08:00Plus even the news sources note that she DID have ...Plus even the news sources note that she DID have hobbies, including painting, after her injury. <br /><br />I'll also point out that many people wouldn't even put a dog down over a spinal cord injury; they invest in a set of doggie wheels and their pets live on happily for years and years.Samhttps://www.blogger.com/profile/11064818894436302156noreply@blogger.comtag:blogger.com,1999:blog-1556371561007953336.post-39172671377507174582012-02-17T15:36:23.840-08:002012-02-17T15:36:23.840-08:00Med2d, You wrote "Imagine no work, no hobbies...Med2d, You wrote "Imagine no work, no hobbies, no sports, no travel, no fun, no sex,... Especially for younger people it can be very difficult to handle that." This is a giant leap in logic. Do you assume such things are beyond the ability of paralyzed people? You fail to ask the important question why no work, hobbies, sports, travel, fun or sex? Symanski was capable of all these things with a degree of adaptation.william Peacehttps://www.blogger.com/profile/00223601480542461802noreply@blogger.comtag:blogger.com,1999:blog-1556371561007953336.post-76517529836790748192012-02-17T01:13:49.706-08:002012-02-17T01:13:49.706-08:00If someone with disability, even with most severe ...If someone with disability, even with most severe disability you can imagine, wants to live and considers his or her life still meaningful, in this case doctors, friends and family should help and fully support this person. BUT, in case if he does not want to live anymore, I can´t see a reason to force someone to live against his will. It is selfish even from family to force somebody to live and suffer only becouse they will mourn and miss him if he will die. If I will be in that kind of situation and will decide to die, nobody will be able to stop me. It is my life and it´s not anybody´s business if and why I want to live or don´t want to live. Sometimes death is better than suffering. Except Jesus, who suffered becouse of our sins, there is no purpose of suffering. When dogs or horses suffer we kill them but when people suffer, we force them to live at all cost. Why is death so bad ? What is the point to live only for sake of living ? What about quality of life ? Why should I want to live if I can´t do anything except lying on bed all day for years until I die later anyway ? People have many needs and wishes in their life, when they can´t fulfill any of them, when they lost almost everything what maked them happy,there in no wonder they want to die. Imagine no work, no hobbies, no sports, no travel, no fun, no sex,... Especially for younger people it can be very difficult to handle that.Med2dhttps://www.blogger.com/profile/12254445432271595505noreply@blogger.comtag:blogger.com,1999:blog-1556371561007953336.post-83153829895059529572012-02-15T22:01:01.917-08:002012-02-15T22:01:01.917-08:00I just discovered the blog by Christina and I was ...I just discovered the blog by Christina and I was thoroughly moved. I myself am not a victim of permanent paralysis, but I have been restricted for a year, which is nothing compared to many of the insightful posters and Christina. <br /><br />I have had many experiences in my family with terminal illnesses. My mother being such a strong woman, such a strong person, has been tortured with an incurable intestinal disease. They can't identify it as Chrohn's or even an obstruction. Quiet honestly, they do not know the problem. But she has had it since I was four years old, and I am now twenty two. She's had countless surgeries, has spent YEARS in the hospital. She fights through it, but she is not completely incapable. And she's had times where she didn't want to fight anymore and wanted to give up. I find it particularly occurs when she looks back on what she HAD, and what she USED to do, that brings upon that depression. <br /><br />My sister had an Autoimmune Kidney Disease and had all the joys of her teenage years ripped away. She often felt tortured watching her friends dress up and go to prom, while she had to stay home and attend dialysis, or quiet often, just hear about the events later while she lay in her hospital bed. <br /><br />I myself, was diagnosed with what was grade II spinal chord tumor, that formed due to a Medulloblastomas in the back of my brain. This had caused a blockage of my CSF, which in turned caused a "S" shape curve in my spine, which threatened to cut into my spinal chord. Needless to say, I had several extensive spinal and neuro surgeries in order to save my life.<br /><br />Now, I am grateful that I am alive today. However, maybe it is my age, or the experiences that I've witnessed, I can relate to Christina. Being someone active like she seemed to be, one of my biggest most DEVOTED passions in my life was severely threatened when we found of my condition: Horses. And it's easy to say well, life doesn't end because you can't ride anymore. Or horses aren't everything. It's about living the life you can. I'm not sure I agree. Considering you HAD this life, and this WAS it, this was your future and your past and your present. But it's not anymore. Yeah, I can't honestly say, I wouldn't have done the same thing that she did. I've seen people, and I've felt with having to be coddled and have what I felt, were my freedoms stripped from me.<br /><br />Just three years ago, my grandmother was involved in a car accident. An 18 year old girl ran a red light and hit her. My mom being an only child, I was quiet close to my grandma. I don't know how many grandchildren can say that they talked to their grandparent everyday- but I can. Because I did. Everyday of my life. I knew she was a very strong, active woman. She had taken care of my grandfather, an amputee for a few years when this happened. Continued to cook and garden all the way up to this point. NEVER would get taken care of, but always did the taking care of. I believe her injury was from C1-C4, because she had very little, BUT SOME, movement in her hands (although because she had a fourth degree burn on her left arm, ultimately this was rendered paralyzed as well.) Time and time again, she fought for a year, staying in beds that were unfamiliar to her, and letting strange people attend and care for her. Giving up what she felt was her dignity, regardless if it's natural to every person or not, was something she wasn't willing to sacrifice. And time and time again, she asked my mother and I to end her suffering. She begged and pleaded. Because it wasn't a life for her, and she had lived so much of it before, that this sliver of a shadow of what once was, wasn't enough to her. <br /><br />I can't say I wouldn't have done the same thing. And I have so, SO much respect for people that have disabilities and that continue on! But, just because one person has the strength or the will to persevere, doesn't make it wrong that one person might not.Unknownhttps://www.blogger.com/profile/16113870266982831228noreply@blogger.comtag:blogger.com,1999:blog-1556371561007953336.post-38297781946026036072012-02-15T18:37:26.342-08:002012-02-15T18:37:26.342-08:00Just discovered this today. I'm... very distur...Just discovered this today. I'm... very disturbed by her death. I knew her personally, I was one of her students the year of the accident. <br /><br />I wrote something for her on my personal blog, you can check it out here- ideasofidealists.blogspot.com<br /><br />I admit I've not read many of the comments, but... the woman I knew as Miss Symanski was a great woman who inspired me. And she still does.Joshua Valetthttps://www.blogger.com/profile/01406360100076422876noreply@blogger.comtag:blogger.com,1999:blog-1556371561007953336.post-13773206882546690102012-01-29T10:20:57.780-08:002012-01-29T10:20:57.780-08:00I was waiting around today and was researching som...I was waiting around today and was researching something and came across the comments on Christina again and additional one. Sorry folks.. a disabled does not make your life useless or not worth living. Life is what you make it. Able bodied ppl are depressed also. I have lived 28 yrs as a para and I wouldn't take anything for 1 minute of it. I only get sad thinking it might just be 20-30 more yrs with cath's, bowel programs and needing help. I am sorry she is gone but the goverment is quickly leaning towards the decision that disabled ppl are not worth the cost of care and I FOR ONE AM, so are YOU. Ppl want to talk % these days.. get in the % that love to wake each day, regardless!Julshttps://www.blogger.com/profile/12819558824247370957noreply@blogger.comtag:blogger.com,1999:blog-1556371561007953336.post-20552154530013627792012-01-29T10:20:06.550-08:002012-01-29T10:20:06.550-08:00I was waiting around today and was researching som...I was waiting around today and was researching something and came across the comments on Christina again and additional one. Sorry folks.. a disabled does not make your life useless or not worth living. Life is what you make it. Able bodied ppl are depressed also. I have lived 28 yrs as a para and I wouldn't take anything for 1 minute of it. I only get sad thinking it might just be 20-30 more yrs with cath's, bowel programs and needing help. I am sorry she is gone but the goverment is quickly leaning towards the decision that disabled ppl are not worth the cost of care and I FOR ONE AM. Ppl want to talk % these days.. get in the % that love to wake each day, regardless!Julshttps://www.blogger.com/profile/12819558824247370957noreply@blogger.comtag:blogger.com,1999:blog-1556371561007953336.post-21370442004751117972012-01-06T11:32:32.059-08:002012-01-06T11:32:32.059-08:00As for compassion: I have the same automatic negat...As for compassion: I have the same automatic negative reaction to this word as well (at least in the context of services to people with disabilities). True compassion is a great thing, but when used to describe services to people with disabilities it seems to feed back into the perception that disability is one neverending tragedy and that the main thing people with disabilities are looking for are people who understand how horrible it is that they're disabled. <br /><br />I'm not saying that care workers should be callous, but when people feel that their goal is to be "compassionate," they often end up acting like this: <br /><br />http://www.mouthmag.com/issues/58/contam_smile.htm<br /><br />And unfortunately a lot of the people they help may even think that they're getting "compassionate" care, wonder why it makes them feel so terrible, and conclude there must be something wrong with them.Samhttps://www.blogger.com/profile/11064818894436302156noreply@blogger.comtag:blogger.com,1999:blog-1556371561007953336.post-68174946041254524892012-01-06T11:18:42.178-08:002012-01-06T11:18:42.178-08:00Indeed, there is considerable literature supportin...Indeed, there is considerable literature supporting the fact that nondisabled people dramatically overestimate the negative effects of disability. This article has a good overview: <br /><br />http://works.bepress.com/cgi/viewcontent.cgi?article=1015&context=samuel_bagenstos&sei-redir=1<br /><br />The reason that your medical experiences aren't very good indicators of how you'd feel is that (if I understand what you're saying) they never became sufficiently routine. Research and personal narratives show that it takes a lot of time for the necessary psychological adjustment to happen, much longer than most hospital stays. Plus, when you undergo a medical procedure while hospitalized and in the midst of an acute medical episode, stress is extremely high which is going to exacerbate negative reactions to those procedures. <br /><br />In fact, there's actually a lot of literature that this prediction bias plays out in other situations too, and that the best way to anticipate your reaction to something you haven't experienced is to look at <i>other people's</i> reactions to the same thing, not to try to compare it to your own feelings when imagining the event or to previous situations in your life that may have been relevantly different (for example, predicting your long-term reaction to something that you've previously only experienced on a temporary basis). Here's a link to that:<br /><br />http://thesituationist.wordpress.com/2009/11/08/dan-gilbert-on-why-the-brain-scares-itself/Samhttps://www.blogger.com/profile/11064818894436302156noreply@blogger.comtag:blogger.com,1999:blog-1556371561007953336.post-87395281318078456192012-01-05T14:33:14.264-08:002012-01-05T14:33:14.264-08:00William,
First I would like to thank you for your...William,<br /><br />First I would like to thank you for your thoughtful comments and willingness to include me (and others who are not paralyzed) in this discussion. While we may not be able to completely understand one another, talking about it in a thoughtful way helps us examine our beliefs and allow for other views besides our own to enter our consciousness. This discussion has certainly made me examine my beliefs about people with disabilities, specifically those who are paralyzed.<br /><br />I would like to respond to a couple points in your last comment:<br /><br /><i>Bhaa Dass, you seem to accept as a given paralysis is inherently bad. I do not share this view at all. Do I want to be paralyzed? Of course not. No one does. But so what. Many methods of adapting to paralysis exist. Symanski appears to have consistently refused to adapt. By adapt, I do not mean physically but rather socially.</i><br /><br />This comment gave me pause. Do I really believe being paralyzed is inherently bad? To examine my beliefs, I had to first start with the word "bad". <br /><br />Mirriam-Webster lists fully 10 definitions for "bad" as an adjective, the first being, "Failing to reach an acceptable standard, poor". Do I believe this about paralysis, or more accurately, a paralyzed person's life? In general, no I don't. I don't believe paralysis is the deciding factor. <br /><br />I could say no to most definitions on this list. But then I look at definition 4: "disagreeable, unpleasant" or definition 7: "Suffering pain or distress" and I think, "yes, I do think it would be disagreeable and unpleasant to be paralyzed. I do think it would involve suffering pain and distress." But then I further think, "Whose life doesn't involve feeling and enduring these things?" I have certainly found long periods of my life to be disagreeable and unpleasant and have suffered a good bit of pain and distress as well.<br /><br />I guess a better question is do I think living life paralyzed is not a life worth living? The answer to that is "I have no idea. Just as I have no idea whether my next-door neighbor's life is a life worth living." In other words, I don't think the fact of being paralyzed is in and of itself any indication of a person's life or worth.<br /><br /><i>In no way am I passing judgement or making a political statement as Bha Dass suggested.</i><br /><br />I'd like to clarify: I never said you were passing judgment. My first comment was a response to your post. The comments following were in response to other posters whom I indeed found to be very judgmental.<br /><br />Regarding a political statement, my comment was, "You seem to think her actions were (at least in part) some sort of political statement, reflecting badly upon all disabled persons." My comment was in regards to this part of your original post, "In choosing to die people like Symanski and Clendinen reinforce an ugly truth about how people perceive disability--that is one is better off dead than disabled." To my ear this sounds as if you believe her act was, at least in part, a statement reflecting badly on all disabled people, further, you say you believe her act has the possibility of influencing policy regarding those with spinal cord injuries. The word "political" may not be entirely accurate, though it is accurate if we are including government-run programs like Medicare or Medicaid. The comment was not that you were making a political statement, but that you seemed to believe Ms. Symanski to be.<br /><br />Again, I would like to say how much I appreciate the thoughtful dialogue and your willingness to include able-bodied people in the discussion.Bhaa Dasshttps://www.blogger.com/profile/10299958604180757881noreply@blogger.comtag:blogger.com,1999:blog-1556371561007953336.post-47068286731668966902012-01-05T14:25:42.661-08:002012-01-05T14:25:42.661-08:00Also in response to Sam:
I don't think all th...Also in response to Sam:<br /><br /><i>I don't think all that matters is that people should be nicer or more compassionate or more reassuring. All of these are nice, I guess, but they're not really sufficient.<br /><br />"Nice" isn't enough to make you feel respected and in control. In fact, some behaviors that are commonly classified as "nice" and "compassionate" are actually infantilizing and demeaning ..."<br /><br />It just means that something more is needed beyond "nice." That "something more" is hard to define and I don't want to get roped into trying to define it. But I wanted to point out that "nice" is not necessarily enough for "good."</i><br /><br />Nowhere in my post do I say people should be "nicer". I do say people should endeavor to be more compassionate. These concepts are not interchangeable. <br /><br />"Nice" is defined as: "pleasing, agreeable". Also: "appropriate, fitting" and: "virtuous, respectable" and: "polite, kind". Do I think any of this would have helped Ms. Symanski? I do not. Nor do I say so anywhere in my posts.<br /><br />Compassion is defined as "sympathetic consciousness of others' distress, together with a desire to alleviate it". Do I believe sincere compassion (rather than a desire to be "nice" to her or help "fix" her situation) may have helped Ms. Symanski? I do. Do I believe it would have saved her life? Not necessarily.<br /><br />The questions we are pondering are huge questions with few obvious answers. Unfortunately Ms. Symanski is not here to answer them herself. I do believe, however, that her posts hold many clues to the ultimate question "Why?" --if we are willing to listen.Bhaa Dasshttps://www.blogger.com/profile/10299958604180757881noreply@blogger.comtag:blogger.com,1999:blog-1556371561007953336.post-28911736357965220332012-01-05T14:24:33.973-08:002012-01-05T14:24:33.973-08:00Sam,
I would like to address a few of your comment...Sam,<br />I would like to address a few of your comments:<br /><br /><i>...most people's predictions about how depressed they'd be if they became physically disabled are usually wildly inaccurate. Even people who've had to deal with, say, bowel regimens during the course of a temporary illness (a time when most people are also otherwise in acute distress) are not very good at predicting how they would feel if such regimens, out of necessity, became a routine part of their lives. </i><br /><br />I'm not sure where your information about "most people's predictions" comes from. Have you worked with many people who were able-bodied and became paralyzed as adults, have you personally done a survey, or is there a study about this you can point to? <br /><br /><i>So no, none of your experiences along these lines give you much insight into how you'd feel if you were paralyzed. The vast majority of people in the exact same situation don't kill themselves. </i><br /><br />My "experiences along these lines" my perceptions of them and my reactions to them have been consistent over a period of many years. I have stated that I have been hospitalized and forced to endure many procedures I found invasive. Why should I believe I would feel any different if I were paralyzed? What makes you think you know better than I do how I would or would not feel? <br /><br />Past behavior is the best indicator of future behavior. My state of mind now is directly relevant to my state of mind in the future. (As was Ms. Symanski's.) Past behavior cannot directly predict outcome in any given situation, but to suggest I have "no idea" how I personally would feel is offensive to me. Nowhere do I say I absolutely believe I would feel suicidal if I were in Ms. Symanski's position. What I do say is that I can empathize with how she felt and understand why she was willing to end her life to make it all stop. <br /><br /><i>It seems like you feel that, if I or others suggest that maybe Ms. Symanski's death could have been prevented through something short of "curing" her paralysis, that means that we're judging her personally. </i><br /><br />I never said that, nor meant to give that impression. You believe that her death could have been prevented. I believe it might have been prevented, but that regardless of the myriad avenues of support offered she still might have wanted to kill herself. There is no way to know absolutely. What I find judgmental are the assertions that she <i>should</i> have felt or thought a certain way, that she somehow didn't try hard enough, that her decision about ending her life in the hopeless situation she felt herself to be in, indeed, her own perceptions and feelings about her situation, were wrong.<br /><br /><i>It's true that people who are suicidal need support not judgment, but "support" doesn't mean "I totally understand and will support your choice to die," it's "I see that you are in a serious crisis and I will do everything I can to help you either change your situation or learn to cope with it.</i><br /><br />Ms. Symanski had far more of the latter than the former, yet it didn't save her.Bhaa Dasshttps://www.blogger.com/profile/10299958604180757881noreply@blogger.comtag:blogger.com,1999:blog-1556371561007953336.post-76634739799196759282012-01-01T07:55:14.351-08:002012-01-01T07:55:14.351-08:00Mama Bear, You are correct all comments are based ...Mama Bear, You are correct all comments are based on a limited amount of information about Symanski's life. This does not prevent me or others from discussing the larger implications of her decision to commit suicide. I thought I was very clear that there is much we do not know. I presume nothing.<br /><br />Phil and Bha Dass, Not sure what to add to your extended and interesting comments. What is clear to me is how far outside the norm Symanski's views were. In 33 years of paralysis I have never come across a person that experienced such turmoil and angst years after injury. No one I have spoken to in 30 years ever described a bowel program as akin to rape. Bhaa Dass, you seem to accept as a given paralysis is inherently bad. I do not share this view at all. Do I want to be paralyzed? Of course not. No one does. But so what. Many methods of adapting to paralysis exist. Symanski appears to have consistently refused to adapt. By adapt, I do not mean physically but rather socially. This fascinates me because she was a strong person. Anyone that escapes an institution as she did has fortitude. <br /><br />Sam, You make multiple good points. At issue is why. Why did Symanski choose to die? In no way am I passing judgement or making a political statement as Bha Dass suggested. Instead, I am questioning what does her decision say about how we support and think about disability. Symanski is an extreme case--her views were radically different. She was "tortured" by simple bodily functions and the more I think about her decision to commit suicide the more I am upset with the cure industry. In the olden days I was told you are paralyzed and that's it. Move on with life. Now paralyzed people don't go to "rehab" they got o "rejuvination" centers. This is much more than semantics. What is implied here? Walking is superior, a goal to be sought. Symanski seems to have bought into this and gave herself a 5 to 10 year window hoping for a cure. Hence her involvement with the Reeve Foundation. All this did inmy estimation was let her avoid adapting--adapting here I mean to be social not physical. <br /><br />Identity: It is nor required to have a disability in order to comment here. Nor is it required to be a quad to comment on the issues a quad experiences. Likewise, men can comment on issues women deal with and the reverse is true as well. The goal here is a deeper understanding of the issues all people with a disability adapt to. Thus I reject Symanski's belief that no one without her life experience can comment on her decisions. Like it or not, decisions, especially one such as committing suicide, do have larger implications for friends, family, and as it pertains here to disability in general. <br /><br />Last point. To reiterate, I do not judge or condemn Symanski decision to commit suicide. I do question what it means. I do wonder about its implications. I am concerned some emergency room MD will read about her life and decide to let a person with a high spinal cord injury die rather than be treated. My concerns keep me up at night and I remain worried less for myself than for others at risk.william Peacehttps://www.blogger.com/profile/00223601480542461802noreply@blogger.comtag:blogger.com,1999:blog-1556371561007953336.post-20659104394326571052011-12-30T14:47:40.213-08:002011-12-30T14:47:40.213-08:00Also, I want to point out that I don't think a...Also, I want to point out that I don't think all that matters is that people should be <i>nicer</i> or <i> more compassionate</i> or <i>more reassuring</i>. All of these are nice, I guess, but they're not really sufficient. <br /><br />As a point of context, a large part of my job is to help people get out of mental health institutions and nursing homes. Although mental health disabilities are obviously not totally equivalent to physical disabilities, avoiding institutionalization is a common concern among both people with intellectual or mental health disabilities and people with mobility impairments. <br /><br />It's telling that, even though there's a <i>lot</i> of abuse in institutions and nursing homes, very few people with severe disabilities think that a nursing home would be okay if it was just staffed with <i>nice, compassionate people</i> as opposed to abusive people. "Nice" isn't enough to make you feel respected and in control. In fact, some behaviors that are commonly classified as "nice" and "compassionate" are actually infantilizing and demeaning (e.g., care workers who baby-talk to an adult, or who try to "soothe" the person when that's not actually what the person wants).<br /><br />Unfortunately, too many people think that, because many people feel like they've lost autonomy and control despite the fact that their care workers are "nice," disability automatically means a total loss of autonomy and power over their lives. It doesn't. It just means that something more is needed beyond "nice." That "something more" is hard to define and I don't want to get roped into trying to define it. But I wanted to point out that "nice" is not necessarily enough for "good."Samhttps://www.blogger.com/profile/11064818894436302156noreply@blogger.comtag:blogger.com,1999:blog-1556371561007953336.post-24502729639196163962011-12-30T14:09:24.296-08:002011-12-30T14:09:24.296-08:00A very well enunciated statement, Sam. You have g...A very well enunciated statement, Sam. You have grasped the essence of the dialogue...it is usually the failure of society to support and provide adequate options that make the severely disabled feel like they are a burden when they are really not!Phil Dzialohttps://www.blogger.com/profile/04150881545903849250noreply@blogger.comtag:blogger.com,1999:blog-1556371561007953336.post-14388843911411007552011-12-30T13:47:15.075-08:002011-12-30T13:47:15.075-08:00Can we step back for a minute and clarify what we&...Can we step back for a minute and clarify what we're actually arguing about? Because I keep hearing Bhaa arguing that we shouldn't "judge" Ms. Symanski and should seek to understand her, and I don't think anyone's actually objecting to that. I thought the argument was over what could have been changed (short of a "cure") so that she wouldn't have felt the level of despair that she felt. I don't see how this is a matter of judging anyone. <br /><br />On the other hand, Bhaa, it's important to remember that your words aren't being said in a vacuum. It's ok to talk about what <i>Ms. Symanski</i> felt as is evidenced by her own writings, but please keep in mind that most people's predictions about how depressed they'd be if they became physically disabled are usually wildly inaccurate. Even people who've had to deal with, say, bowel regimens during the course of a temporary illness (a time when most people are also otherwise in acute distress) are not very good at predicting how they would feel if such regimens, out of necessity, became a routine part of their lives. So no, <i>none</i> of your experiences along these lines give you much insight into how you'd feel if you were paralyzed. The vast majority of people in the exact same situation don't kill themselves.<br /><br />It seems like you feel that, if I or others suggest that maybe Ms. Symanski's death could have been prevented through something short of "curing" her paralysis, that means that we're judging her personally. I don't feel that way at all. It's extremely common for people to not be able to see what could be changed to make their lives better, and a lot of elements in Ms. Symanski's life that might have made her more depressed - say, the pervasive attitude in our culture that it's not okay to need to be taken care of - is not really under her control. It's true that people who are suicidal need support not judgment, but "support" doesn't mean "I totally understand and will support your choice to die," it's "I see that you are in a serious crisis and I will do everything I can to help you either change your situation or learn to cope with it."Samhttps://www.blogger.com/profile/11064818894436302156noreply@blogger.comtag:blogger.com,1999:blog-1556371561007953336.post-1765197116375707522011-12-30T12:30:55.152-08:002011-12-30T12:30:55.152-08:00Phil,
With respect (and I do have much respect fo...Phil,<br /><br />With respect (and I do have much respect for your situation) I must disagree.<br /><br />You say it is "utterly amazing and beyond comprehension that two non-paralyzed people,who are not members of the "club", are having a dialogue about "valid" reasons for offing oneself." <br /><br />If I understand the information in your earlier posts, and I do not mean to offend you, I feel I must point out this distinction: You care for someone who is profoundly disabled. You yourself do not live in a disabled body. You did not live in Christina's body. You are not a woman, do not have a period, and do not have the same life experiences and feelings about your body as she did. <br /><br />What is amazing and beyond <i>my</i> comprehension is your assertion that because a bowel program is a matter of life and death, it cannot also feel intrusive and undignified. I do not understand how you can see these things as mutually exclusive. <br /><br />While I am able-bodied, I have been hospitalized several times, have had surgeries, been catheterized, and have needed other procedures that were "a matter of life and death". Some of these procedures were merely frightening or profoundly uncomfortable or painful. Others left me feeling violated. It didn't matter that the people around me tried to reassure me. It didn't matter that I <i>knew</i> the procedures were necessary. <i>I still felt violated</i>. <br /><br />If I follow your logic, because these procedures were necessary to keep me alive, I am wrong for feeling violated. I am sorry, but I do not accept that. Only <i>I</i> know the full extent of what I endured. Only <i>I</i> was there, <i>inside my body</i> while these procedures were performed. Only I know my own experience.<br /><br /><i>Read Christina's blog</i>. In fully 60 percent of her posts she talks about how disturbed she is by her bowel program, as well as less invasive procedures such as being bathed or assisted with her period. She knew all too well that her bowel program was necessary to keep her alive. <i>She still felt violated</i>.<br /><br />I'm not sure if you have read my posts completely (I wouldn't blame you if you skimmed them, they are too long). Nowhere in my posts do I speak about "valid reasons for offing oneself". I simply point out that I have empathy and a degree of understanding for why Christina wanted out. I also understand that many others in her position have no such feelings, nor do I believe they should. <i>Every person is different</i>. Every person has the right to their own feelings and their own reactions to their own experiences. <br /><br />What I am suggesting is that we all have compassion for each person's experience, whether we understand their experience or not, rather than dismissing their experience because it's fact and implications upset or disturb us. If we decide "it's a matter of life and death, so therefore you cannot possibly feel violated", where is the compassion in that? Where then, is the motivation for an aid to be gentle and understanding while ministering to the patient if "it's not intrusive and undignified if you want to live"?<br /><br />Through compassion for people's emotions and reactions to their situations, compassion and empathy for their suffering, I believe we can gain insight into how better to care for them so that their suffering can perhaps be alleviated and suicides like Christina's may be prevented.Bhaa Dasshttps://www.blogger.com/profile/10299958604180757881noreply@blogger.comtag:blogger.com,1999:blog-1556371561007953336.post-72558419476194800522011-12-29T11:21:20.380-08:002011-12-29T11:21:20.380-08:00Sam, I do understand what you said, it's ok......Sam, I do understand what you said, it's ok...but, thanks for clarifyingPhil Dzialohttps://www.blogger.com/profile/04150881545903849250noreply@blogger.comtag:blogger.com,1999:blog-1556371561007953336.post-16560683657396267932011-12-29T11:12:08.299-08:002011-12-29T11:12:08.299-08:00Phil, that was absolutely not my intention. I was ...Phil, that was absolutely not my intention. I was trying to point out that even if there were issues that bothered Ms. Symanski they were most likely social factors that could have been changed. I really didn't want to imply that there was ever a good reason to kill oneself (although when taking about suicide by anyone, I think input from people with mental health disabilities who have been suicidal can be valuable, and my experience is that a lot of the time people who are suicidal need changes to their social environment, not just meds). But I probably opened myself up to that interpretation by trying to debate someone who clearly thought there were.Samhttps://www.blogger.com/profile/11064818894436302156noreply@blogger.comtag:blogger.com,1999:blog-1556371561007953336.post-62034924821134405892011-12-29T07:26:53.092-08:002011-12-29T07:26:53.092-08:00I find it utterly amazing and beyond comprehension...I find it utterly amazing and beyond comprehension that two non-paralyzed people,who are not members of the "club", are having a dialogue about "valid" reasons for offing oneself. In the case of the able, assistance with bowel function is possibly undignified (sorry, you're constipated); in the case of the para or spastic quad, it's a matter of life and death. It's a bit different, it's not intrusive and undignified if you want to live.Phil Dzialohttps://www.blogger.com/profile/04150881545903849250noreply@blogger.comtag:blogger.com,1999:blog-1556371561007953336.post-52489082177200237472011-12-28T21:52:33.031-08:002011-12-28T21:52:33.031-08:00Wow. Just ... wow.
I'm confused (to say the ...Wow. Just ... wow.<br /><br />I'm confused (to say the least). First you say that it's somehow unreasonable or demeaning to suggest that most people would be uncomfortable having strangers digitally penetrate them to stimulate a bowel movement. <br /><br />Two paragraphs later you say you agree that "having a <i>stranger</i> perform this sort of intimate care can be extremely difficult". <br /><br />So which is it? It's either difficult or it's not.<br /><br />You also suggest that I am somehow personally insulting the author of this blog by saying "'anyone would find that really hard to take' right on the blog of a paralyzed individual, is, let's just say, problematic." <br /><br />Really? Why? You yourself say in the next paragraph that you "don't like the implicit comparison between 'able-bodied' people with MHD and people with paralysis". If there is no difference, why wouldn't a paralyzed individual be as disturbed by a bowel program as an able-bodied person?<br /><br />At the very least, you contradict yourself. At worst, you presume to be offended on behalf of the author of this blog, when, a) you yourself are not paralyzed and b) the author is a an intelligent man who, from what I've read, is perfectly capable of expressing his opinion himself.<br /><br />You also say "Why can't it be a person with whom you choose and build a working relationship with?" Why? Because it is virtually impossible to build that relationship with someone who will not eventually move on. This was one of Ms. Symanski's laments. That even when she was able to build a relationship with one of her aids, eventually that person would leave and be replaced. By a stranger. <br /><br />No matter how much we improve the system, I can't see that factor disappearing. People have their own lives to live. They move on from performing this sort of care for all the same reasons (and no doubt many other specific ones) as anyone moves on from a job. <br /><br />And for the record: I've had to have multiple blood draws in short intervals over long periods of time and have never "adjusted to it". <i>Every person is different</i>.<br /><br />Your example of your friend with a needle phobia clearly implies that anyone with a needle phobia would "adjust" if presented with controlled multiple blood draws in a short period of time and "could adjust better" with "appropriate treatment for phobia". The implication being that to continue to have this phobia that your friend has (and by extension any of us with some unresolved phobia issues have) is not trying hard enough to find the "right" combination of factors to "fix" things. This is insulting to your friend and insulting to anyone with an unresolved phobia.<br /><br />Finally, I'm not sure where you got that I am presuming the system had no hand in her misery. It is crystal clear from her writing that it did. My initial comments and the main point I am trying to get across is that she had valid reasons for wanting to end her own suffering.Bhaa Dasshttps://www.blogger.com/profile/10299958604180757881noreply@blogger.comtag:blogger.com,1999:blog-1556371561007953336.post-59057940697882648302011-12-28T20:50:07.051-08:002011-12-28T20:50:07.051-08:00Who among us who has been able-bodied and independ...<i>Who among us who has been able-bodied and independent, no matter how gently and kindly the procedure was performed, would not feel profoundly uncomfortable with a stranger digitally penetrating our anus to stimulate a bowel movement?</i><br /><br />I dunno, maybe you could ask <i>the author of this blog</i>.<br /><br />I understand that both of us have our own challenges, but that doesn't give us the license to demean the lives of people with other kinds of disabilities. By saying things like "well anyone would find that really hard to take," right on the blog of a paralyzed individual, is, let's just say, problematic. <br /><br />I also don't like the implicit comparison between "able-bodied" people with MHDs and people with paralysis; again, such a comparison assumes that people with mobility impairments are inherently much worse off than the temporarily able-bodied. I'm sure that there are plenty of people with paralysis who wouldn't trade places with either of us.<br /><br />As I've tried to make clear, I'm not trying to minimize the concerns you're raising about how it must have been for Ms. Symanski. Her words speak for herself, she was obviously miserable. I wouldn't even say I think there's something wrong with <i>her</i>. As a woman and a survivor, I agree that having a <i>stranger</i> perform this sort of intimate care can be extremely difficult, even if the stranger is "nice." But why does it have to be a stranger? Why can't it be a person whom you choose and build a working relationship with? At the very least, that would be better, no? Whoever thought it was a good idea to structure personal services delivery the way it's structured has no clue. <br /><br />I also do think that other medical care services can usually be done better for people who are survivors of abuse and/or have other mental health issues. For example (sorry, TMI), like many women, I used to be totally incapable of tolerating a pap smear until I was given the ability to control the process myself. A close friend of mine used to faint every time he got blood drawn, until he started having to get blood drawn every single month for medical reasons; he adjusted to it, and probably could have adjusted even better if he'd had appropriate treatment for phobia (which he hasn't, despite being in pretty intensive mental health treatment otherwise). <br /><br />At the bottom of it though I can't really point to exactly what went wrong with her care because I wasn't there, but I *have* to presume that something could have been done better. To presume that it's <i>not</i> the system's fault is to risk not doing anything about situations that could have been changed, and risk people dying as a result.Samhttps://www.blogger.com/profile/11064818894436302156noreply@blogger.comtag:blogger.com,1999:blog-1556371561007953336.post-27388211702059989492011-12-28T19:59:26.677-08:002011-12-28T19:59:26.677-08:00Sam,
In response to your second comment:
I beli...Sam,<br /><br />In response to your second comment: <br /><br />I believe you do have a point about about some medical procedures and personal care services being performed in an intrinsically violating way. Many times they are. But I speak from experience when I say that for some of us who has been sexually or otherwise physically violated, no amount of compassion or gentleness can stop us from being re-traumatized by certain medical procedures. <br /><br />Among other things, I have a profound fear of needles. I communicate this phobia as clearly as I can any time I am in a situation where I might need an I.V., a blood draw, or an injection. I can honestly say that almost every single time, the staff is understanding, kind, gentle, compassionate, and careful to try and make the experience as easy as possible, and every time I get an I.V., blood draw, or injection, I experience panic, anguish, and I shake and sob for a period of minutes to hours afterwards. This has nothing to do with the treatment I have just received and everything to do with the trauma I endured as a small child. Trauma that has been imprinted in me so deeply, no amount of telling myself everything is fine, listening to others tell me everything is fine, assurances I am safe, comforting words or deeds, <i>none of it</i> stops me from feeling re-traumatized.<br /><br />While Christina did express frustration and displeasure with some of her aids, she also made it clear that many of them were compassionate and gentle, yet she still felt embarrassed, humiliated, and traumatized by their care.<br /><br />(For the record, I wholeheartedly agree with your list of unacceptable treatment in the second to last paragraph. My point is that for some, even the best care can be perceived as humiliating, invasive, and traumatizing just by it's very nature. Who among us who has been able-bodied and independent, no matter how gently and kindly the procedure was performed, would not feel profoundly uncomfortable with a stranger digitally penetrating our anus to stimulate a bowel movement?)Bhaa Dasshttps://www.blogger.com/profile/10299958604180757881noreply@blogger.comtag:blogger.com,1999:blog-1556371561007953336.post-9832295912677125782011-12-28T19:57:57.745-08:002011-12-28T19:57:57.745-08:00Sam,
In response to your first comment following ...Sam,<br /><br />In response to your first comment following mine:<br /><br />I appreciate your sharing your views on this matter. I too have had my share of mental health challenges (at one time or another I have been diagnosed with complex PTSD, clinical depression, and OCD). In my mid-forties now, I can honestly say I have spent more years participating in various therapies for my difficulties than not. I am profoundly grateful for the help I have received and yet, I cannot honestly say I am glad to be alive. Life is still a daily struggle for me. That is not to say there is no love or joy in my life, on the contrary, I feel blessed to have wonderful people all around me. I still do not feel as if the love and joy in my life has balanced out the abuse and trauma I have suffered and the aftermath I continue to suffer. And I am able-bodied!<br /><br />I think this is why Christina's words and life touched me so deeply. Certainly I know there is boundless suffering in the world, certainly I know there are multitudes who have it far worse than I do. Somehow this has never been comforting, only depressing. But happening upon Christina's blog I felt a kinship. I felt as if "Yes! Someone gets it!" And Christina's situation was far worse than my own. At least I am (for the time being) able-bodied, relatively healthy, and mostly independent. I felt if she could keep going so could I.<br /><br />While I agree that expressing suicidal thoughts should be a warning to others, I do not agree that whatever is causing the individual to feel as they do can always be changed. <br /><br />Christina had myriad avenues of support. Much more physical and emotional support than most people in her situation, given her access to medical care, her family's financial circumstances, and her fierce resolve to remain independent. She tried everything she could think of to improve her situation. Some of the support she received helped, some did not. In the end the deck was stacked too far against her and she simply became too tired to continue trying.<br /><br />I don't believe there was anything "wrong" with her that was possible "fix". She was a human being in a situation that overwhelmed her and those around her. She lived as best she could, accomplished more with her art and writing in the six years she was paralyzed than many people accomplish in an able-bodied lifetime, faced the horrors of her daily life courageously, and ultimately succumbed.<br /><br />It is very sad that her situation could not be improved sufficiently to keep her with us, but the reality is, it could not. It is not always possible to "save" someone. This does not mean we shouldn't try--certainly everything that can be done should be done--it just means that at the end of the day, any individual person's psyche is a complicated thing, and free will must always result in at least some pain and loss.<br /><br />Why did she want to die? I cannot say for sure. I can only offer my best guess, which I have done in my comments above. <br /><br />As you phrase it, "Ms. Symanski found her life to be utterly intolerable". Not "somewhat intolerable" not "mostly intolerable" but "utterly intolerable". This is, no doubt, her reason for finally abandoning what she clearly believed to be a lost cause. It was her cause and therefore her decision to make. Whether we understand her decision or not, she (and others living with physical and/or mental anguish) should be free to make it without being judged.Bhaa Dasshttps://www.blogger.com/profile/10299958604180757881noreply@blogger.com