She asks if I ever wanted to give up, when I was so ill like her. She wants to give up.
This is the first message I see when I check my phone in the still dark cold of the morning before heading out for my walk. My walk then serves as meditation time to become clear before staring my day working with clients with acute and chronic illnesses.
I wonder about the effect of how the day before, the Tucson Mayor and City Council voted unanimously to support Aid in Dying, “which enables a competent, terminally ill adult to obtain a life-ending medication should their suffering become unbearable.” They urged the legislature to legalize it.
The answer to the question I started with is yes, I did want to give up when I was so ill. I often felt suicidal, especially after seeking out medical care and getting turned down because I was too ill, too poor, or lived too far away when I lived rurally.
Denying services to someone in need can be seen as a message to “go ahead and die.” Individual health care practitioners can give that message too, as I learned not only from the passive lack of care I myself experienced at times, but from a friend’s distress after he took a job in the psychiatric ward at a large hospital serving primarily low-income people. Most of the patients come in against their will, after a suicide attempt or other behavior that indicates they may be a risk to themselves or others. While he understood how his coworkers burned out, it was still disturbing when they expressed resentment at their patients and saw them as a burden.
The message to die also comes when people talk about a life not worth living, referring to a life like yours. That can morph into a desire to help you end your suffering. When I was five, a tumor was removed from my bladder. Every six months for several years, I went back into the hospital to be scoped to see if the tumor was growing back. With the technology of the day, that was a very painful process; while the actual procedure was done under anesthesia, they then inserted a catheter into my tiny urethra. The quick removal of the catheter was done without anesthesia. But the worst pain was to follow; I was in agony the first time I’d pee with that bloody cracked open part of my body. And of course over the whole experience hung the fear that the tumor would grow back.
Other kids were in harder situations. I wondered about the white girl with black toes in a nearby bed, and my mother explained that was because she had been kept in the garage and given only Coca-Cola. Then there was a girl of perhaps three, who danced on the table in the playroom. When I asked why she was allowed to do that, my mother said, “Because she’s dying.”
After I learned to read, on the ward I discovered a book written for children in the hospital. At last someone who understood! But what did they tell me? Put your hand on your pillow, and that will be a sign to God to take you. I did it. The pain in the hospital was bad, but it was nothing compared to the abuse I suffered at home. I was ready to have it stop the only way a six year old could.
I awoke the next morning, and went on with my life. I’m thankful I did. To the woman who wanted to give up. I said, “I felt that way and am thankful I chose to hang on.” She is not my client; while we can communicate, we don’t share the same first language, and I felt thankful that I was able to refer her to someone working in her native language, to coach her in the brain retraining program that helped me recover from severe chronic fatigue and multiple chemical sensitivities. These are not illnesses often classified as terminal, but people do die in great suffering with these illnesses.
And it is so very hard to witness people suffering. Pain medication only goes so far, as I have witnessed not only in my professional life, but also in my mother’s pain with her spine cracking from metastatic lung cancer. I was relieved when she died. And also there was healing in witnessing the natural process of letting go in her dying process.
I’d like to die many years from now in my sleep. But if I develop a terminal illness, I don’t want to do the equivalent of forcing a naturally winding river into a concrete chute to get the water to the desired destination in a neater way. To heal from chronic illness, I needed to examine what it is to try to feel safe by controlling things, rather than surrender to what is much bigger than I am. So I wonder how much people are seeking the end of the suffering of the terminally ill, and how much it is trying to control things, so we feel less afraid, afraid of what it is to be so vulnerable as we lose functioning. To be vulnerable as we rest in the arms of others, whether they are family and friends, or compassionate strangers who radiate a universal love and perhaps have time to get to know us a little, to share in the life that is ending in its own timing.
This article appears in Dec 31, 2015 – Jan 6, 2016.
My body, my choice.
Thank you for a beautifully written article. Holding my loved one as she died in my arms from many illnesses, I know the “letting go” of the process. Both of us let go and I continued without her. It was hard for the first years, but now in the 5th year since her passing, I am happy to be alive and productive. Thanks again for a poignant piece on a topic too many want to avoid.
I watched my nephew die of MS. No one, should have to suffer like he did, it’s not compassionate nor human. We treat animals better.
Having watched as so many die over a 40 year career as a nurse. Having watched as so many died in my family, starting at age 6. Having seen so many struggle with chronic, even though not fatal, but so debilitating disease…..there are absolutely NO simple answers here, or anywhere.
I firmly believe that chronic/nearly terminal/terminal illnesses MUST be approached with the focus on the patient’s wishes, & their family & significant others. As bizarre as it seems at the moment, so many, many DO NOT make plans, give guidanc tor their loved ones as they approach their final moments, and certainly, nothing legal to give guidance. All too many times, what I’ve heard is “you know what I want” to be completly dissected by oposing viewpoints not familiar to all the family members.
As a retired nurse, as a family member, as a friend who has so often witnessed the struggle of the dying and their families, I have to repeat, once again, PLEASE TALK TO YOUR LOVED ONES ABOUT WHAT YOU WANT TO DO/HAVE/ NOT HAVE, when dying. Otherwise, you & your loved one’s wishes will be taken out of your hands, including the Do Not Resuscitate orders.
Thank you for this beautifully written piece. What we advocate is OPTIONS and CHOICE. May you die the way you wish, and may I be granted the same privilege. Aid in Dying is just that let me live and die MY WAY.
It is a beautifully written piece, and I am so sorry for your suffering.
I worked as a hospice CNA for years. I know for sure that quality of life for those dying slowly is completely eliminated. Are we talking a five-year old girl getting preventative testing here or someone slowly dying from an agonizing, certainly fatal condition?
Experience? Work as a line staff in a warehouse for the lonely dying. Sometimes it isn’t just a concrete chute but merely an eddy under the water, capable of easing the pain, returning the floater home a little more easily, that the sufferer seeks.
Compassion is not always wishing life on someone.
I am not sure I agree with you, but I appreciate the perspective.
As with most issues, there is no clear-cut black or white. It is worth the discussion.
I recently spent a long while with my father as he died and previously did so with my mother. Each had progressive, chronic conditions. My mother experienced extreme pain which was inexpertly managed at the end of a five year illness, while my father experienced episodes of severe confusion. Each had a difficult journey punctuated with many moments of love and quality and even wonder. We were extremely fortunate to have loving caregivers who made all the difference. As a speech-language pathologist, I have worked in nursing homes and have seen human beings warehoused. I have seen people have frightening, painful passings when they were treated callously. I understand the wish for control over one’s own passing. I also understand the exhaustion that can come for even loving family members as they care for a dying person.
I am troubled by the issues implicit in this legislation. It is easy to envision a society in which many physicians would be likely to prescribe a lethal dose of drugs rather than to refer patients for palliative care. Palliative care, and for that matter. extended rehabilitation, take time, effort and financial resources. Not all families would rather care for a loved one during an extended illness than say a quicker, more “realistic” goodbye. I am not by any means an advocate for use of heroic measures or extended life support in the case of terminal illness. But I believe that individuals should make that decision through advance directives. Once one is ill, it is very difficult to avoid being pressured in one way or another.
In Germany, euthanasia for elders and for the disabled was first carefully presented as a compassionate option. Only after society had accepted this was it implemented with steadily increasing brutality and this was the context in which Zyklon B was first tested. In such a society, the developmentally disabled individuals with whom I have worked for many years would all be assigned to “special treatment”, based upon the view that they waste government resources.
I , too, would like to die in my sleep without pain. However, based upon what I have seen over the years, this is doubtful.. I can only hope that someone with a compassionate heart and medical skills eases my journey–but not by euthanasia. Even if that were to spare me pain, I fear that I would be helping to lay the groundwork for the violation of the rights of elders and the disabled who have the desire and the right to live.
There is no reason for suffering. Some diseases are unbearable, and I think that all people should have the right to die in dignity. I believe in euthanasia. I hope to put this in will, so I have no undue suffering and my loved ones will not suffer watching me suffer. If is a painful, terminal condition, why waste time suffering. It is your time to go.
Your question is salient. While meditating more and more recently on my own need to attempt to control it’s been surprising to realize how ubiquitous it is. My attempts at not controlling are often motivated by a paradoxical delusion that by giving up control I will be in more control, though I cloak it in attempted detachment expertly. As a motivating factor it is so unconscious and powerful it is absolutely necessary that we explore it individually.
Individual and sociological patterns created by people acting unconsciously through the need to control is becoming my definition of evil as I explore and understand my own motivations more and more. My two cent opinion on the legislation would also be an attempt to influence and control, so I will refrain from posting it, because it seems hard and fast rules are delusions in a fluid, ever-changing reality where context creates meaning.
There are many thought provoking comments here, presented clearly and honestly. Yet, most of them reflect fear of the process. Fear of the unknown, fear of what might happen IF we allow euthanasia – if we DON’T allow euthanasia. Either way there will be horror stories of what happened as a result; that is the human condition. Let’s continue to discuss it and try to come up with something that will work the best for most. There really are no easy answers.
It is way past time that people can decide when they want to die in peace. Before they get too ill and not able to be a human, but just a body, who is supporting the medical and drug companies. It is time to take politics and profit making health care systems to remove themselves from making our decisions. Death is part of life and should not be frighten to people. Why should people have to suffer in pain for those that just want to make money from them.
Let be humane and allow people to make their own choices on death and when they are ready. It could be a happy time for the family left behind, knowing their loved one made the final choice and not the decease that invaded their body.
So many people are alive, suffering, and bedridden, maybe lost of mind too. These are the people that hopeful can make or have made the choice on death. Trillions of dollars wasted on their lifes. So Sad. Lets move on to a new society that respects death, as well as life.