Tuesday, May 31, 2011

Why I Think I Should Be Allowed To Die With Dignity

For those of you that read my blog regularly, thank you. As you know, in my previous blog, I discussed the HBO documentary, "How To Die In Oregon." As you also know, I'm a firm supporter of the right to die, and advocate for patient's rights to determine his/her own quality of life. I commend the citizens of Oregon, Washington, and Montana for being objective, and legalizing physician assisted deaths. I think it should be legalized in every state.

A special thanks to Nancy, for reading my previous blog and giving your feedback. Thank you so much for your response! I was so touched by your love, commitment and dedication, to your husband. I commend you, and thank you, for helping to raise awareness to this subject. Watching the documentary, really struck a chord inside of me. This is an issue on my mind daily, and very near to my heart. Your comments have given me food for thought. They have also left me with the need to respond, to your thoughts on paralysis and how it would, or wouldn't qualify someone for a physician assisted death. I would like to respectfully disagree, in my case, and here's why:

I'd like to take this opportunity to clarify my own beliefs, on euthanasia and explain why I feel I too, deserve the right to die with dignity. I hope everyone can read my arguments with an open mind. Keep in mind, my reasoning and arguments are not meant to offend, or necessarily aimed at any particular individual. I'm just stating my beliefs and thoughts, about my situation, and continuing the dialogue that was started in my previous blog. I'm not mad, or offended by any comments made to me. I would just like to expand on what I've already stated, and explain why I feel a law like, Oregon's "Death With Dignity Act" should apply to my case, in particular.

First off, it is very easy to dish out lofty advice, when you are not the one facing harsh realities, extreme physical limitations, and chronic physical suffering. I for one, am sick and tired of able bodied people, who can enjoy the simple luxuries of being able to do things, like cleaning their own bottoms, and blowing their own noses, tell me how I should live my life, and why I should continue to suffer. I'm tired of hearing the word depression, being used as scapegoat, to ignore, or excuse the real medical, and physical trials I must endure every day. I don't ever get a break, or a time out. I don't have many choices, or options. It's "this is what you must do to survive, with a high level spinal cord injury," or I let nature run it's course, and I die. Those are MY only two options.

Unless you've been in my shoes, I have a hard time absorbing any justifications, or reasonings as to why I MUST, or SHOULD continue to suffer. I'm not just referring to "quadriplegics" in general. I'm talking about women, with high level complete spinal cord injuries, that are in their thirties, that were injured in their twenties, that have no children, that lost a career, that have IBS, and that suffer from daily bouts of autonomic dysreflexia. If you are one of the few people on the planet that fit in that category, by all means, share your insight, and advice on coping with me.

If you don't belong in my boat, please save your judgement, and just take a moment to think what you might do in my situation, and how you might want to be treated. Now, imagine the last time you were sick with the flu. Remember the discomfort, dull aching, and fatigue. Now pretend someone is telling you that you are going to have that flu, that same aching, pain and fatigue for the rest of your life, every day, and that you can no longer care for yourself, indefinitely. Think of having to have dozens of people see you nude, and touch you, on a daily basis. Imagine needing to ask someone for every need; from scratching an itch, to brushing your teeth, to tying your shoes. I can guarantee you, from experience, that your worst fantasies, would not do justice, to the reality of actually living this way. I have lived on both sides of the fence, both as an able bodied adult, and as a disabled adult. I know exactly what I'm missing out on, and how much better life could be.

In regards to my situation, it is not merely the fact that I'm paralyzed, that makes me want to end my life. I'm certainly not saying that everyone who is paralyzed should want to die. My body, and it's reaction, and response to being forced into living this way, has become extremely painful, and uncomfortable. I deal with autonomic dysreflexic symptoms, on a daily basis. My tolerance for sitting is poor. I'm left feeling ill, with low grade fevers, chills, chest pressure, fatigue and cold sweats almost every day, for the past two years. Living with paralysis, and dealing with the immense magnitude of loss, was hard enough, when I was feeling decent. Feeling ill, on top of everything else, day in and day out, with no relief, and no answers, has made this life unbearable.

After seeing the film, I wrote to the state of Oregon's contact email address (http://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Pages/index.aspx), to determine if I'd qualify to die, under the law. Paralysis is not a terminal "illness," but in my case (C4/C5 complete- no functional mobility) it is most certainly a terminal condition. Every day my body is forced, unnaturally, into performing functions it can no longer do on it's own. I have no ability to be self sufficient whatsoever. It is only through medical intervention (pills, bowel regime, catheter, and nursing care) that I am still alive. If I were to refuse help, I would most certainly be terminal. I find it hard to understand why the government, wouldn't, or doesn't want to recognize that fact. It has nothing to do with high level quadriplegics being worth less, or disabled people being less valuable. It's just being realistic, and stating facts. Having a high level, complete spinal cord injury is a terminal condition, without treatment. That is a fact.

I think what is important, or the larger issue at hand, is the degree of suffering an individual has to endure, given his/her medical prognosis, weighed in conjunction, against the likelihood of being "cured," or alleviating painful symptoms. In my case, my spinal cord injury has created a tremendous amount of discomfort, and pain (physically, and emotionally). Even if I were to rid myself of the depression, that I don't deny exists, to a certain extent, I am still left with chronic illness and AD symptoms, that the doctors have not been able to successfully treat, or alleviate.

When you couple the physical suffering, on top of the severe limitations, and loss that I've endured, living itself becomes unbearable. Not to mention the treatments that paralysis forces on me. Under any other circumstance, in any other context, my bowel program alone, would be considered torture. I don't really have a choice. My body no longer functions properly. In order for my body to get rid of the waste that my body produces, a nurse needs to manualy stimulate my sphincter muscle, through use of suppositories, and manual stimulation. I was never asked if this was ok. Life with paralysis forced it upon me. I either accept it, or die from impaction, and sepsis. Just as people in Oregon, and Washingon have the right, to say they don't want to have to be cared for, neither do I. I could get a colostomy, but I feel like that is just another unnatural treatment, and do not want it. Personally, I don't think it's right for others to insist I do these things, or expect me to suffer.

I've been seriously considering exercising my right to refuse food/water, as a means to end my suffering. I have been consulting with a local palliative care consultant, but want to thoroughly investigate all options, so I can have to peace of mind, of knowing I'm making the most informed decision possible. Realistically, being a NJ resident, refusing treatment is my only legal option, to hasten my own death. The palliative consultant I've been speaking with seems confident, that I would be able to receive hospice care (to help provide comfort) and that death by starvation/ dehydration would be relatively comfortable, and peaceful for me.

In order for me to get hospice care, my doctor would need to diagnose me as being terminal. We have already discussed this. Once I decide to refuse food/water, I would technically be considered terminal. In just so happens that a man I knew from rehab (who was injured in a motorcycle accident, and sustained a similar injury) who chose to exercise his right to refuse food/water, about a year after our accidents, and died "peacefully" surrounded by family, and the support of hospice. Although it's possible, my doctors and case manager are hesitant. They are both requiring I have a psychiatric evaluation done. I need to be declared mentally competent, before they are willing to give me the terminal diagnosis. I've been in close contact with my lawyer, throughout my fact finding process. I also created a living will, appointing my sisters as health care proxies and created a DNR order. I realize the intricacies and the legal implications, that my decision to refuse food/water would have. I'm confident, that if/when I have had enough of suffering, and have reached my limit, that this is my only alternative, and that it will successfully result in my death.

I know if/when I decide to do this, it will be extremely difficult for my loved ones to witness. I'm trying to do as much fact finding as possible, in hopes of subsiding my own fears, and providing some sort of comfort to them. Death by starvation/dehydration, is my only realistic option, if I stay living in NJ. I've read many articles about this topic, and am frustrated by the strong contrast in the information I've found. Half describe, a rather peaceful, euphoric, slipping away, while the other half tell horror stories of week long, painful, drawn out deaths. Of everything I've read, they almost all discuss very old, very ill people. I'm young (30) and "relatively healthy" (I find that description humorous, given my total lack of control, or sensation of 85% of my body, and total reliance on people, medications & treatments). God, religion, and philosophy aside, I feel like refusing help, would be allowing nature to run it's course. Naturally, I'd prefer to be miraculously cured, or at the very least to be given the right to die with dignity, but my reality is most likely I won't have either option.

I feel like I'm a prisoner, within my own flesh, and am being kept live, by unnatural means. This debate boils down to the issue of quality of life. No matter how you slice it, my paralysis, and my physiology have sentenced me to having a very low quality of life. I feel strongly that if I did live in Oregon, my case should qualify for DWD. I'm curious to see what they write back. I know for a fact that people in my similar condition have applied to Dignitas, in Switzerland, and have been granted the right to die. I wish the United States was as open minded, and compassionate as the Swiss government. If I were Swedish, I would've certainly ended my own suffering at least a year ago. Despite having loving friends, and family, I'm at a point where every day I'm alive has come to feel like a punishment.

- Posted using BlogPress from my iPad


  1. Hi Chrissy,

    I've been following your blog for the last year, via lurking on the Care Cure forums. I'm not paralyzed, and I don't know anyone who is (just very interested in neurology and SCI). I'm a first year medical student who isn't really equipped to do anything but listen.

    I've seen your artwork, writing, and videos, and I'm so incredibly moved by all of it. I can't say I do understand you or I don't understand you, because I'm not in your position and I'm not you.

    What I can say is, no matter what you decide to do, I just wanted to let you know that your voice, your suffering, and your perspective have made more of an impact on me than you can know. I don't know if that's any help at all.

    I think you've made a huge difference to those whom you write and speak to. They try to teach us "empathy" in medical school, but it's so canned and well... the opposite of your writing.

    I think the awareness you're drawing to your situation will benefit us all. I don't know if your goal is outreach, but I so much appreciate what you've done so far. Please let me know if I can be of any help. I write for the LA Times and the Hastings Center, and I have a blog on PLoS.


  2. @Shara- Thank you so much for your feedback :) It does help, just knowing that people are out there, listening. Even when someone might write to me, that doesn't share my point of view, or agrees with me, it is still valuable, because it is my goal to raise awareness. Just knowing that sharing my story might open up dialog, or serve as a starting point, makes me feel good.

    I've had many people in my similar situation tell me that they feel as though I am speaking for them; that my words are the same as their thoughts. Many people have thanked me, over the years for being so open. There are many people in the SCI community that feel very similar to me, but for whatever reason, are too shy, or unwilling to share their feelings in a public forum, or for the entire world wide web to see. I understand the hesitation. Being as honest, and outspoken as I am, leaves me vulnerable to critiscm, and open to judgement.

    I don't mind airing my dirty laundry, for the world to read. I feel like my voice, is one of the few things I have, and one of my only tools of helping myself amd others. I realize not everyone who reads my blogs will agree, or understand. My hope is always foremost, to educate the general public. I aim my writing at the average person, that has no clue, what living with paralysis is like. I'm not out to inspire other disabled people, or to dish out advice on coping, because I struggle too much myself, and feel that most people living with paralysis already know what it's like. My goal is to open people's eyes, and minds,& to help generate support towards a cure and to hopefully inspire change towards patients' rights.

  3. I am also an artist, and wow I would not know what I would do if I was in your situation. It would be be so depressing. I admire that you continue to paint. I have children so I would probably stay alive for them, but if I didn't perhaps I would be done.
    I support you in whatever you believe is best.

  4. Dear Chrissy,

    Your artistic and writing talents aside, the world will be at a deficit when you eventually do move on. I pray that your suffering ends whatever you decide. Thank you for realigning my gratitude for the freedoms a lot of us so easily take for granted. Ultimately, it's your life, and you should have the right to choose how and when you want to proceed into the next phase of it. That's all death is, another transition. Peace to you and your loved ones.

  5. I know how you feel. Living with severe cerebral palsy can make you want to call "Dr Death" sometimes, because I want to do something and I can't. For example, giving someone a hug, You just cannot give up! There are tools our there like conselorling and antidepressants. I have inspired many people in my 27 years, and you can do the same! Nowadays, you can still do your recreational activities, but you just might need extra help. The road may be bleak now, but don't give up!