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Friday, December 9, 2011

Mourning for Christina Symanski: Better Off Dead?

Last week I came across a blog entitled “Life; Paralyzed” written by Christina Symanski. The blog was devoted to her “thoughts & day to day struggles living with paralysis” and “current information related to spinal cord injury”. Symanski started her blog in September 2009 and her last entry was posted on September 13, 2011. Since I discovered her blog I have read each and every entry several times. I found much of what she wrote eloquent even though I considered her views on spinal cord injury morbidly depressing. I was hooked by her passion and the raw way she expressed her emotional and physical struggles. In fact, I stayed up most of the night reading her blog from beginning to end. In the morning I googled her name and found more of her writing, paintings, videos posted on various sites, and to my great shock I learned she died two days before I discovered her writing. I was dumbfounded by her death. I still am shocked. I mourn for a woman I never met. My heart goes out to her family.

Not once in the last week has Symanski been far from my mind. Every morning I google her name in the hope of finding an obituary. Every morning I am disappointed. No mention of her death has appeared. I do not know why Symanski’s works have touched me so deeply. Perhaps her words struck a chord because they are so radically different from mine. Perhaps it is because she wrote so well. Maybe it is more basic; I am appalled by her death and morbid views of paralysis. Even more disturbing to me, she did not die of natural causes. She wrote extensively and with sincerity about her desire to die, to end her suffering. She accomplished this goal and in the manner she wrote about. Based on threads at the Care Cure Community, she refused all food and hydration. According to a woman that identified herself as Christina’ s best friend “Christina passed away yesterday, December 1st, exactly two months from when she started refusing food, water, and medical treatment. She spent most of those months at home, aside from a week in a hospice facility to get her palliative meds sorted out. Everything didn't play out quite as peacefully as she imagined it would, and she was conscious up until a few days ago, but her final moments were calm and comfortable and she passed on in her own home with her family at her side.”

It is one thing to express a desire to die, to essentially starve and dehydrate one’s self, and another to follow through. Symanski’s writings illustrate her interest in a cure for spinal cord injury, struggle coping with a high-level spinal cord injury that caused a host of medical complications, foremost among them autonomic dysreflexia, and her increasing despair. In 2009 her entries largely concerned a cure for paralysis. Symanski was injured in 2005, spent a long time in critical care hospitals and was for more than a year the resident of a nursing home. She escaped the nursing home, an almost impossible feat, lived in her own apartment and was remarkably productive. She was interviewed for newspaper articles and talked at length about her artwork. She posted three well produced but maudlin videos on line about life with a high-level spinal cord injury. A cursory reading of Symanski’s posts indicate that as 2010 progressed her entries became increasingly dark. Her autonomic dysreflexia continued unabated and the solutions suggested were unacceptable.

Three posts this year were particularly dark. Here I refer to “Meeting with Fr. Doug”, May 9, 2011; “How to Die in Oregon”, May 31; “Why I think I should be Allowed to Die with Dignity” May 31, 2011. All three posts indicate she was actively seeking a physician that would declare her terminally ill and I hence be eligible for hospice care. She consulted a lawyer to discuss the legal ramifications of her desire to die. She also contacted a local palliative care consultant to discuss all her options. Just as she was driven to search a cure for spinal cord injury she was equally driven to die. This is deeply disturbing to me at multiple levels foremost among them is that she convinced a doctor, lawyer, psychiatrist, palliative care specialist and her family to acquiesce to her wishes. This is well outside of the norm and I wonder about the ethics and legality of her actions. It also reveals an unspoken truth. When a person with a disability expresses a desire to die and engages in an all out effort to die they are applauded and encouraged by others—others without a disability. Symanski’s blog is littered with encouragement and supportive words. Her express desire to die in face of a debilitating condition reminded me of a lauded opinion piece I read in the New York Times this summer. “The Good Short Life” by Dudley Clendinen was an eloquent expression of his desire to die before ALS robbed him of his dignity. Society loves people like Symanski and Clendinen who are stately, dignified and eloquent. Their desire to die is perceived to be noble. Here is the problem. No one asks why, why do they want to die? Symanski feared being forced back into a nursing home. Clendinen questioned why he should spend $14,000 a year on a medication that will extend his life a few months.

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. Of course few people will openly admit this. Jackie Leach Scully identifies this as nonverbalized bias “disablism”. She wrote “ People who are nonconsciously or unconsciously disablist do not recognize themselves as in any way discriminatory; their disablism is often unintentional, and persists through unexamined, lingering cultural stereotypes about disabled lives”. This made me wonder what would have happened to Symanski if she were not paralyzed and instead had a more socially acceptable chronic disease. Would she have been allowed to dehydrate and starve herself to death? Not a chance. It is only because she had a severe disability that her desire to die was understandable, acceptable to others.

41 comments:

Matthew Smith said...

I actually know a few people with chronic illnesses and others with disabilities (and a few with chronic illnesses that cause disability) and most of them do not want to die. I saw two of them yesterday say they did not even really want to be cured anymore, as they felt they could do more good in their current condition (and, I suppose, because their disability had become part of their identity and was the source of many of their friendships). However, of the one that did (I did not know her, but I know several people who knew her), the stated reason was a desire to escape a pain-ridden life trapped in bed in a dark room, where she had been since she was 14 (which was over 16 years ago by then), punctuated by traumatic hospital stays. That person was featured in a film I reviewed yesterday. However, I do strongly believe that the traumatic hospital encounters were what pushed her into seriously wanting to die. There is a post I saw by her shortly before one of these incidents, in which she said she was grateful that she was not as ill as she was before, although "I'm still pretty poorly & life's a struggle". Not the words of someone who wanted to die.

There is a dogma that exists that you cannot question someone else's life choices, and this shows up in every discussion about this. People have a greatly exaggerated view of the importance of autonomy - as long as your choices hurt nobody else (as in physically), nobody should even question their validity. Nobody appears to have spoken up and said this was wrong, and the one person who I know strongly disapproves does not say so openly. The same can be seen in the discussion about Christina Symanski's death. The mentality is particularly prevalent on feminist blogs, even where the climate is against assisted dying - there are a lot of derogatory terms and neologisms for unwanted advice and those who give it: "policing", "mansplaining", "gaslighting". In the case of the lady in the film, the only people who appear to have seriously tried to dissuade her were her parents. Those who told her they understood although they'd miss her terribly were other sick people. I think people were at a loss as to how to persuade her -- I would have been as well, her life really was miserable -- but that's not even remotely true of most of these assisted dying cases. Often, they were people who were depressed or just adjusting to a new state of disability. The people who facilitated them were irresponsible, but I don't believe they were acting out of prejudice, but simply felt unable to deny their loved one their wishes.

sbcallahan said...

as a therapist I can only wonder if this young woman truly understood her decision. as someone on a "deadline" I can only say that there are days I look back on and know that some would have stopped having hope on those days. that is how it is done here, the promise of better or less painful days ahead. after a few days it can be hard to hold on to hope. the difference is she could have lived with her disability.

my mother has polio and it has not been an easy road for her. everyday life is a struggle for her and so I have never felt sorry for myself as a result. this is a great gift that she has paid dearly for. I remind her now that my strength was born of her suffering. she reminds me she has known no other way.

the word noble is not what comes to mind here but is it not her choice? whether anyone agrees with her or not it was her life and only she knew if it was unbearable.

putting it all aside here I thank you for sharing her story and it would be of benefit to so many if they could understand the very real issues at stake here. even more tragic than her death is it is not being used to learn from. how do we improve as a nation our care for the most vulnerable of our society?

Garr said...

Her blog http://lifeparalyzed.blogspot.com/

now contains final Message to friends.

Unknown said...

Hi, I also stumbled upon Christina's blog recently and spent many nights reading. I noticed a few weeks ago that all of her blogs, twitter and other activities stopped and I had a feeling that she wasn't well. I also read her blogs where she expressed her desire to die. And when I googled her name, it was the day after she died...so my suspicious were true. And I also can't stop thinking about her.

However...I see it a different way...she was so miserable with her disability and so uncomfortable that she did not see a reason to keep on living...nothing was ever going to change for her. The fact that she did what she did shows that she had an amazing will power and she did exactly what she wanted to do.

Unless any of us is in her exact shoes, we cannot judge or understand.

I hope that she found peace and comfort.

william Peace said...

Unknown, I am not judging Symanski's life or decision to end it. I am however asking why did she feel the way she did. Why did she think her life had no value. It cannot be her disability and medical complications alone, in isolation. People with more severe disabilities than she had lead rich and productive lives. I agree she had great resolve, few escape nursing homes a she did. I disagree with you r.e. needing to be in her own shoes. This sort of logic would prevent a male scholar from women's studies or a non disabled person from disability studies.
Phil, Wow, what a wonderful comment. She did seek professional help for depression and took a number of medications. For reasons I cannot fathom she perceived disability to be akin to suffering, This a senseless waste of life and an indictment on the lack of social supports people with a disability can access.
Matthew, As always, thanks for your comment. I keep thinking what if she did not have a spinal cord injury and instead had chronic fatigue syndrome. No MD in America would have signed off and declared her terminally ill. I liked your flm review very much.

Matthew Smith said...

The problem with getting treatment for "CFS" or ME (I dislike the term CFS because, besides its being trivialising, fatigue isn't the defining characteristic of it - the hallmark is the increase in pain, sickness and other symptoms after exercise or stress, which is pretty much unique) is that doctors often refuse to believe it is a physical condition and insist on psychological or psychiatric explanations, even, sometimes, for obvious physical symptoms. So, she might not have got a doctor to sign her off as terminally ill, but she would have had extreme difficulty obtaining appropriate medical treatment or getting signed off for disability and might have simply had to leave her job without any benefits. As for her wish to die, it might well have been interpreted as part of the same psychological complex that brought about her "illness beliefs", rather than a reaction to severe pain, sickness (nausea), isolation and abuse by arrogant and disbelieving doctors.

It's noticeable in her videos (and some of the pictures of her that exist post-injury) that she never really smiles, and her face always has this joyless expression. She clearly found so much about her condition extremely distressing, perhaps more than many other equally (or more) severely disabled people. She doesn't complain much (if at all) in her blog about not being able to walk; she complains about the time-consuming bowel care regime (which, when in the nursing home, was carried out daily in front of her room-mate) and the lack of sensation and its effect on her interaction with others. I suspect that it has less to do with "internalised disablism" as with being unable to come to terms with the loss of privacy and control over her personal care and, perhaps, her personal safety.

william Peace said...

Matthew, Yes, doctors have been slow to acknowledge and treat CFS. I had thought things were better now but I suppose that is naive.
Good point about lack of joy with Symanski. Everything she did was cast within the context of the past. Nothing she did was valued for what it was. I have noted this in what her sisters and best friend have written on line. I am still disturbed by the Care Community site. We need to encourage people with disabilities to live not die. And to live people need social supports that are grossly lacking.

Mama Bear said...

I think you all need to consider that you are commenting on a fragment of someone's life that they chose to on a blog. Please quit presuming you know everything about this young lady, her family, her choices, and her decision.

Bhaa Dass said...

I too recently found Ms. Symanski's blog and became obsessed with reading every long post from the beginning. When she went on hiatus, I checked back for a few weeks and then got wrapped up in a new job and holiday business and forgot to check back.

I read her "message to my friends" post with sadness and relief. I Googled "Christina Symanski Obituary" and came upon your page.

You cannot understand why she would end her life. I cannot understand how you could have read her blog and feel that way. Also, you seem to think her actions were (at least in part) some sort of political statement, reflecting badly upon all disabled persons.

I'm truly flummoxed. I am an able-bodied person. It wouldn't occur to me for one second to think disabled people in general all somehow lead lives not worth living.

This young woman chronicled very meticulously her reasons for wanting out. You wonder why she left? I don't. Not for one second.

I know people who get a flu and go to work and keep keeping on. Me? I get sick and if it doesn't pass within a couple days, I become terribly depressed. The reasons behind my strange and debilitating depression during sickness are myriad and very personal. What is a mere annoyance to some (a week-to-10-day flu) can sometimes cause me to spiral into suicidal thoughts. True, I have never acted on these thoughts, but then, I have never had fevers, chills, nausea, chest pressure, and insomnia for weeks, months, YEARS. That alone sounds like utter torture to me. That alone sounds like reason enough to leave.

But for Christina there was far more. When I read her blog several things stand out to me, chief among them, her discomfort with needing help with personal care, especially her catheter, period, and bowel program. It is clear that she found this invasion of her privacy and her body unbearable. I cringed to read her experiences and feelings. It is clear to me that she experienced these episodes as a form of rape.

This may be hard for many people to understand, especially those who have never been physically violated. "But it wasn't rape" one might say, "she consented to the care, hell, she needed the care to survive".

This is true on the surface. Read her entries more closely and it becomes clear that she was not truly consenting. She states over and over how she feels that these episodes have been forced on her. She is caught between a rock and a hard place. If she refuses the care she will quickly become very ill and die, causing physical and emotional agony for herself and emotional grief for her loved ones. She stated over and over that she endured what she did because she did not want to disappoint those around her.

I did not know her, but reading her blog I heard her cry out very clearly. Her bowel program in particular was deeply disturbing and traumatic to her and she had to endure it every other day. For some, BP may be uncomfortable, annoying, upsetting even, but to her, it was rape. She was forced to endure it and came to know there would be no end to it.

Look at it that way and surely you can see why she left.

I hold no ill will towards your opinions. I merely hope to help illuminate an aspect of her suffering that you may not have considered.

I wish you the best.

Phil Dzialo said...

@Bhaa Dass
Life pursues life and it's continuation has meaning in itself. You seem to believe that if someone perceives their care to be rife with indignity, it is permissible to simply end it. Normal life for healthy people is rife with indignity...death is not dignified.
My son was underwater at 12 years old as a result of a camp accident. He has a "bowel program, he has a bladder program, he cannot walk, he cannot move his hands, he cannot speak, he needs to be bathed daily, suctioned when he has gunk in his throat and airways. Ever limb is contracted, his body is spastic and he is not dissimilar to a board. He is fed pureed foods and given thicken drinks. Every need is met by someone else.
We have communicated by our love by making it clear that cleaning up shit and piss and vomit are acts of pure love. We have done this for 13 years and will do so forever (not that we will last that long). His body is invaded daily, every fucking day of his life; his spirit is burning with a fire to live. The indignities suffered by a body pale to the indignities suffered by the spirit.
People live if they believe their care allows others to express deep love, if other make the disabled know that they are not a burden. That is the actual problem...not physical indignity.
There is never a day when Adam does not awake with a smile...one of the few things he is capable of. Frankly, reading someone's blog does make you knowledgeable of their life...living it with them does. Human indignity does not justify death; human indignity justifies a fight against oppression.

Bhaa Dass said...

Phil,

My response is in two parts because the character count is too long. This is part one:

Clearly my post touched a nerve (or several). My post was not about your son, or disabled people in general, but rather Christina Symanski's life and situation in particular. You seem to have taken my words personally. Believe me when I say that my post was meant to offer insight as to why she wanted to end her life, not as a pronouncement that every disabled person (or /any/ disabled person) should want the same.

You say I "seem to believe that if someone perceives their care to be rife with indignity, it is permissible to simply end it." Nowhere in my post do I say anything like this.

I am able-bodied and have no children. I can never truly understand what it is to be severely disabled or to care for someone who is severely disabled. However I /do/ understand, all too well, what it is to be raped. To be violated. To have no control over what is happening to your body, and to be deeply disturbed by what has happened, so much so that suicide seems like a viable option to end the continued suffering and mental anguish. This is not something that can be fully communicated to someone who has not been raped, just as there is no way for you to fully communicate what you have gone through with your son to someone who has had no such experience.

Indignity is one thing, torture is another. Where is the line between indignity and torture? I would argue that much (if not all) of the difference lies in the person's perception of what is happening to them. It is the reason why some soldiers develop PTSD and some do not. Why some can live with what they have experienced and some cannot.

Your son's condition as you describe it suggests (and I apologize if I am wrong) that your son has suffered severe damage to his brain. Christina suffered no brain damage from her accident. Also, your son was a child when he was injured, not a fully formed adult with a job, an independent life, an apartment, a lover. What happened to your son is tragic, completely unfair, and undoubtedly physically uncomfortable and painful for him and for your family. Your son's physical condition and that of Christina Symanski are similar in some ways, yet very different in others. I would argue that your son's perception of his life also is very different than Christina's perception of her life.

Bhaa Dass said...

In response to Phil (part 2)

You say, "reading someone's blog does (not) make you knowledgeable of their life". I never claimed to know /everything/ about Christina's life from reading her blog. But if you had read it, you would know that she was meticulous in her descriptions of her physical life and her inner life. My intent was to point out that Christina was in daily physical and mental distress. That the longer this distress went on, the more despondent she became and the more tortuous her life seemed. That she was an intelligent, thoughtful adult, who considered long and hard her decision to end her life, that she did not "simply" end her life (her decision clearly caused her much anguish) but that in the end it was her choice to stay or to go and /her choice alone/. While you may care for someone in a similar state, you have never been in this state yourself. You did not have her body, her upbringing, her experiences, her talents, her worldview. You or any of us can ever know the full extent of what she went through. How then, can you judge her decision?

What you /can/ judge are your own experiences with your son. Caring for your son as he is truly is a daily series of acts of love. I would imagine a sense of duty and responsibility as his parent also play a role in your actions. Even if he is not mentally disabled, your son was so young when he was hurt he never knew a life where he wasn't cared for by his parents. Christina did. There were depths to her sense of frustration, humiliation, helplessness, violation, and hopelessness, that were heartbreakingly beyond what anyone should have to go through and are all clearly expressed in her writing. She knew it would never get any better (and it is not as if she had not fought valiantly for /years/ to make it better--she did). She simply could not bear any more. She had very little control of her own life left, and decided to exercise what little control she still had to end her own suffering.

You say in your post, "Human indignity does not justify death; human indignity justifies a fight against oppression." I agree with you. Christina was at the mercy of her physical condition and her love for her family. Her condition and circumstances were not ones she chose. The oppressive nature of her existence was something she dearly longed to solve, to transcend, but in the end could not and so exercised her right to her own destiny, her own dignity, her own /life/, thoughtfully and with courage.

You say "death is not dignified". I am frankly at a loss to understand this statement. Perhaps a truer statement would be, "In America, we see death as undignified". Everyone dies. Death is part of the cycle of life. If death is not dignified, neither is life, because death is a part of life. In other cultures death is not seen as something to fear or be disgusted by. Please understand: I am not saying one should not fight to preserve life, nor do I mean one doesn't grieve its loss. Death will come for us all. Our lives are our own, the only thing we truly have, and it is up to each conscious individual to guide his or her own destiny.

Bhaa Dass said...

Response to Phil (part 3)

"Life pursues life and it's continuation has meaning in itself." This statement assumes that meaning is always noble or worthwhile. I would argue that it is not. Christina saw no meaning in her suffering. Certainly not any compelling enough to justify its continuation. I am curious to know what meaning you see in it. Christina never advocated that anyone else follow the path she did. She thoughtfully and gravely chose her own way to go. The operative word here is "chose".

If we impose our will on those who suffer like Christina and force them to continue living when they choose not to, how is that any different than looking at a severely disabled person and deciding that because their quality of life is poor, we will impose our will, withdraw care and allow them to die? The removal of a person's control over their own life could go both ways. Do not assume that it would go the way you think it should.

Sam said...

Here, Bhaa Daas, I fixed your comment:

"Perhaps a truer statement would be, 'In America, we see disability as undignified'. Everyone becomes disabled. Disability is part of the cycle of life. If disability is not dignified, neither is life, because disability is a part of life. In other cultures disability is not seen as something to fear or be disgusted by. Please understand: I am not saying one should not fight to avoid becoming disabled, nor do I mean one doesn't grieve a loss of ability. Disability will come for us all. Our lives are our own, the only thing we truly have, and it is up to each conscious individual to guide his or her own destiny."

I am able-bodied, but I also know, for a fact, that if I am lucky - that is, if I'm not prematurely killed in an accident or something of that sort - I will at some point need help with cleaning myself, elimination, and other extremely private daily routines.

I also understand what it's like to be violated, but I also know that a sense of violation is a matter of context. Like most women, I've needed medical care (such as routine pap smears and pelvic exams) that is extremely intimate and can be incredibly violating and painful if done in the wrong way. This is a very real issue for survivors, but most survivor advocates focus less on helping women avoid necessary medical care and more on ensuring that the medical care is performed in such a way that it doesn't feel like a violation.

In my experiences with medical and personal care professionals, I've seen a whole lot who made me feel demeaned and violated. I can totally imagine wanting to die if I had to deal with people like that over the course of years. But maybe the problem is them, not Ms. Symanski's disability itself.

-Twitchy Woman
whoselaw.wordpress.com

Sam said...

I have a mental health disability and so do most of my friends. I would never judge another person for being suicidal.

That said, it's generally understood that when people with mental health disabilities express suicidal feelings, that's a cry for help. There is something wrong with their lives - isolation, abuse, persistent feelings of depression, or feelings of worthlessness - that can be changed with appropriate support. Frequently, that support is not there and people still take their own lives, but at least everyone knows that the suicide of someone with a psychiatric disability is not an okay outcome and should have been prevented. There aren't nationwide organizations dedicated to "helping" people with mental health disabilities take their own lives.

Likewise, I have no doubt that Ms. Symanski found her life to be utterly intolerable. People don't kill themselves for no reason. But simply acknowledging this fact doesn't quite answer the question that Bill posed in this post: "why do they want to die?"

It's clearly not disability itself, because not everyone with a disability - even the same disability, acquired at the same time in life - wants to die. And still others want to die at some point, but then are able to change some part of their lives or some way of thinking about disability, and then no longer want to die.

Sam said...

Since I think we see eye to eye on women's rights issues, here's an analogy:

Imagine that you're living in a society in which women have basically no legal rights and whose husbands are generally chosen by their families. Historically, this is a pretty common situation, and we know that in these societies, some women are basically okay: either their husbands are good people and respect them, or they are protected from abuse and control by some measure of political or economic power. Other women face lifetimes of rape and abuse with basically no exit but death. Unsurprisingly, this is the option that numerous such women take.

The people in this society aren't evil, at least not any more than people in our current society are. They understand that women in "bad marriages" have awful lives, and feel bad for them. They totally understand why they'd want to kill themselves. In fact, many well-meaning men in this society routinely say things about how women are "so brave" for carrying on the way they do and how if they had been born women, they'd probably kill themselves as well. Prominent physicians openly set up shop offering poison to women in bad marriages. Many compassionate family members also assist their daughters and sisters in suicide. Numerous nonprofits advocate suicide as an acceptable option for women in bad marriages. Women's groups that decry this practice, arguing that suicides could be avoided if women were simply afforded certain basic rights, are criticized as unsympathetic and unrealistic.

In the context of all of this, a woman points out the suicide of another woman, expresses outrage and grief, and asks how this could have been avoided. And a man responds with "well, she was being routinely raped, so her choice to commit suicide makes perfect sense to me."

This response incorrectly presumes that being routinely raped is just something that happens to some women, and there's nothing much to do about it other than to support them if they choose to commit suicide.

My theory is that the reason people experience "intrusive" medical procedures and care services as violation is that many of these are performed in an intrinsically violating way, and that they could be performed differently. It's unacceptable that people with disabilities who are on Medicaid aren't entitled to choose their own personal attendants. It's unacceptable that people with disabilities are frequently treated as subhuman by the medical and personal care industries. It's unacceptable that people with disabilities are seen as unemployable and therefore can't continue the livelihood they had before they became disabled. It's unacceptable that people are made to feel guilty for needing assistance for their disabilities. It's unacceptable that people don't have adequate access to pain treatment.

Sorry, this became a bit of a long rant on a blog that I've only just started to read. Bill, feel free to call me off if I'm going overboard.

Bhaa Dass said...

Sam,

In response to your first comment following mine:

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!

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.

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.

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.

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.

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.

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.

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 Dass said...

Sam,

In response to your second comment:

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.

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, none of it stops me from feeling re-traumatized.

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.

(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?)

Sam said...

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 dunno, maybe you could ask the author of this blog.

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.

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.

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 her. As a woman and a survivor, I agree that having a stranger 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.

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).

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 not the system's fault is to risk not doing anything about situations that could have been changed, and risk people dying as a result.

Bhaa Dass said...

Wow. Just ... wow.

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.

Two paragraphs later you say you agree that "having a stranger perform this sort of intimate care can be extremely difficult".

So which is it? It's either difficult or it's not.

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."

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?

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.

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.

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.

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". Every person is different.

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.

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.

Phil Dzialo said...

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.

Sam said...

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.

Phil Dzialo said...

Sam, I do understand what you said, it's ok...but, thanks for clarifying

Bhaa Dass said...

Phil,

With respect (and I do have much respect for your situation) I must disagree.

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."

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.

What is amazing and beyond my 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.

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 knew the procedures were necessary. I still felt violated.

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 know the full extent of what I endured. Only I was there, inside my body while these procedures were performed. Only I know my own experience.

Read Christina's blog. 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. She still felt violated.

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. Every person is different. Every person has the right to their own feelings and their own reactions to their own experiences.

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"?

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.

Sam said...

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.

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 Ms. Symanski 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, 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.

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."

Phil Dzialo said...

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!

Sam said...

Also, I want to point out that 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.

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.

It's telling that, even though there's a lot 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 nice, compassionate people 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).

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."

william Peace said...

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.

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.

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.

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.

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.

Bhaa Dass said...

Sam,
I would like to address a few of your comments:

...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'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?

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.

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?

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.

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 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 should 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.

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.

Ms. Symanski had far more of the latter than the former, yet it didn't save her.

Bhaa Dass said...

Also in response to Sam:

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.

"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 ..."

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."


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.

"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.

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.

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 Dass said...

William,

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.

I would like to respond to a couple points in your last comment:

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 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".

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.

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.

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.

In no way am I passing judgement or making a political statement as Bha Dass suggested.

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.

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.

Again, I would like to say how much I appreciate the thoughtful dialogue and your willingness to include able-bodied people in the discussion.

Sam said...

Indeed, there is considerable literature supporting the fact that nondisabled people dramatically overestimate the negative effects of disability. This article has a good overview:

http://works.bepress.com/cgi/viewcontent.cgi?article=1015&context=samuel_bagenstos&sei-redir=1

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.

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 other people's 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:

http://thesituationist.wordpress.com/2009/11/08/dan-gilbert-on-why-the-brain-scares-itself/

Sam said...

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.

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:

http://www.mouthmag.com/issues/58/contam_smile.htm

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.

Juls said...

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!

Juls said...

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!

Joshua Valett said...

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.

I wrote something for her on my personal blog, you can check it out here- ideasofidealists.blogspot.com

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.

Unknown said...

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.

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.

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.

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.

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.

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.

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.

Med2d said...

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.

william Peace said...

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.

Sam said...

Plus even the news sources note that she DID have hobbies, including painting, after her injury.

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.

Three Rivers Inc. said...

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.