Read Me Some Tolstoy

“Read me some Tolstoy” four words I might have dreamed being asked but never in my wildest dreams did I actually think someone would. The truth is, I had been working up to this moment for quite some time. As a kid, on road trips, I was the obnoxious ten-year-old that would insist that the rest of the car listened while I read to them through the winding roads of the 101. And I wasn’t just hoping for an audience, they needed to be captive. My mom was often the first to remind me that she wanted to enjoy her ride too and to my vexation, I would be muted in the back seat with the exception of my quiet murmuring about the lack of sophistication surrounding me in the car.   

Unfortunately, my talents have continued to be stifled despite my dramatic readings of precious literature. Just last month, I found out that Taylor, my boyfriend, had never read Jane Eyre and so me, being a thoughtful woman,  agreed to read to him aloud so that he could have the full experience. To my chagrin, Taylor fell asleep within 8 pages. And so, again, my book was closed to the sounds of my soliloquy to a vacant audience. It seemed that no one could appreciate the leather bound beauty that sat atop my bedside table for the next two weeks while it collected dust. For this reason, I thought that my opportunity to read aloud must be forever tucked away saved for exceptions , exceptions that subdued my creativity, like when young children wanted me to read Hop on Pop or Brown Bear, Brown Bear.

But as Tolstoy says, “the two most powerful warriors are patience and time”, a few days ago the opportunity of a lifetime finally fell at my footsteps. My hospice patient—smart, well-educated, and painfully quiet—sat opposite me in a lazy-boy. For two months I have visited for about 4 hours each week and have been instructed to quietly study at the dining room table until it is time for me to leave. So when I arrived, without hesitation I checked that the patient had a glass of water, felt warm and comfortable, and then settled into my corner getting ready for four hours of silence. After two hours I heard a stern voice behind me. Directing me towards him, my patient pointed to the cat condo he used as a book shelf and ordered, “read me some Tolstoy”.

 Until this moment my life may have been unfulfilled but I am certain that years of reading in back seats of cars and the disappointments of my listeners drifting off to sleep only made this moment sweeter. As I closed Tolstoy’s Collected Short Stories, my patient looked up at me and smiling said “now, now you are very good, a very good orator; pleasant to my ears.” Nothing else could have made up for the years of distress in the beginnings of my career.

The Whispered Name

           

All distinguishing demographic elements of my patient have been changed in a way that s/he would be unidentifiable. In no way, do his/her race, ethnicity, gender, or other distinguishing features match accurately with the patient I remember. In this way, his/her privacy will be preserved but s/he can also be celebrated.

            I was the last person on the planet that loved him; I know this for a fact. There was no memorial and I am unsure of what Hospice did with his cremated remains after his passing. He left behind three jackets, two pairs of jeans, a couple t-shirts, a framed poster of a morena with long black hair bending over a bike with no clothes on, wilted lilies, and a bracelet—all of which he treasured. For a few months afterwards, I would type his name into Google and hope that something came up that said he had a family or someone that mourned his death. Now, I know that typing in his name only gets me a bio for an Australian tap dancer and a Nike designer.

            When he was given the diagnoses, they moved him off of the streets, where he had been living for fifteen years, and into an adult foster home where a small Filipino woman and her son were the primary caretakers for four lonely dying adults. The caretakers were reported later for neglect—bed sheets would remain unchanged after someone had soiled them, food went uncooked, and the house was so cold that even with two thick jackets I was compelled to roll into a ball and shiver. In the farthest room was a ninety-six year old woman that was convinced the terrier talked to her, the next room was a black man that refused to wear pink and was proud that he went to PSU—that’s all I ever learned about him because it is all he ever talked about—the room closest to my patient was a smoker that was always on the porch with a cigarette and a chocolate bar.

            The first day I came to visit, I introduced myself as a hospice volunteer and the little Filipino woman said, “For who?” It had never occurred to me that there was a place where those that were dying without a friend or family member could go to die together. At the time, my patient was still mobile and had an appetite for both food and Western movies. We would spend our time together watching black and whites where men shot things and jumped on moving trains. However, as weeks passed his health declined rapidly. Our visits filled with conversation and laughter began to end. I no longer heard stories about his childhood in Spain with a gypsy mother and an absent father, he tired of recounting stories from Vietnam where he was a sniper, and the words that we use to share became overwhelmed by a moan that was so horrible that if I close my eyes and picture his face, it is the only sound that I can hear.

            Most days, I would find him rolled into his bed clutching his stomach crying, “mi higádo, my liver”. On these days, I would rub his back. He would bury his head so deeply into the pillow that sometimes I wondered if I was rubbing the back of a sleeping man or a dead one. Sometimes, he would ask me to comb his thick, long, black hair. I would brush it back into a ponytail and he would smile at his reflection until his liver began to throb and then he would cry. Once, his gypsy eyes spotted a painted bracelet someone had given me at a conference. “I love jewelry” he smiled. I took it off and gently placed it on his wrist. His wrist moved lifelessly and the bracelet jingled to a comfortable place. From then on, whenever I came to visit, he was wearing the bracelet proudly.

            As Easter approached, I told him that I would be gone for a week and we said our goodbyes with finality. Having been trained to not show more emotion than a patient, I waited until I got to my car to let myself cry. I imagined him dying while I was gone and no one knowing until they finally came to change his sheets, I cried for his hair that wouldn’t be combed in my absence, and most of all, my tears tried to give him back the dignity that he was losing with his dying process. Before flying home, I bought a bouquet of lilies and left them on his porch with a note that said, “I’ll be back in seven days. Don’t wait up but know we’ll meet again”.

            To my surprise, he did wait. After arriving back in Portland, I went from the airport immediately to visit him. When I walked into his room, I found him as I had left him, tucked in to his bed—painfully—his body facing the wall. I tiptoed in to the room, not wanting to disturb him, and peered over his shoulder maternally. I gently began to move his hair from his eyes, massaged his temples, and told him I was back and so happy to see him. Turning towards me, I saw his eyes smile. “Mano” he said, and I gave him my hand. His bracelet slid down his thinning wrists and with a firm squeeze and a deep breathe, he peacefully died with a friend.

            I am unsure if I will ever have a relationship that is so profound. I sat in the room holding his hand for a few moments finding the lilies wilted on his bedside table and his sheets spoiled underneath him. Knowing that privacy for the patient would be protected by HIPPA, I understood that his name would never be said out loud again. When hospice staff came to collect his body and they filled out all the charts, his patient ID number would be used instead. In short, his name would be forgotten. I would be the last person to say his name, the only person to know it. I tried to memorize the lines on his face and tearfully withdrew my hand to call hospice to pick up my dead friend. It has been two years now but on cold days, or lonely ones, I sometimes go back to my room and put the blankets over my head. In a faint whisper I repeat his name knowing that even if the rest of the world will forget, the silent universe will be reminded my friend once lived.

Arbor Lodge Community Engagement Event

Little Prinz Sponsorship

 

Many of you are familiar with the work Taylor Bergmann has done since returning from Kenya in 2010. Below is a link to the children's home that he has been working so hard collaboratively build. This year, I have joined in helping him and friends in Kenya to continue to provide a healthy and happy life for the children.

One of the main ways the children are able to stay healthy, enrolled in school, and happy is through the sponsorship program. Currently there are eight children who are without sponsors. Sponsorship costs about $46/month and ensures that one child has all of the resources necessary for a healthy home and environment.

If you are able to sponsor a child, I encourage you to check out the link and fill out a contact form. If you are unable to, I encourage you to share this link with someone who might be able to. This is a way for you to make a tangible difference in a child's life. Thank you for all your compassion and kindness. 

 

Little Prinz Children's Home Sponsorship Page

Cain's Arcade Event

JOIN OUR CARDBOARD CHALLENGE!

WHEN: APRIL 13th @1:15-3:45

WHERE: The Downtown Chapel on Burnside and 6th

We are making our very own Cardboard Arcade in celebration of Cain’s Arcade (look it up online because it is awesome!).  Contact Brett Boeh at boeh14@up.edu for more information. Cars will be carpooling for the event but space is limited on a first come basis.

The Dignity of Death and Dying: A Multidisciplinary Exploration

My sister (Kate), my mom (Michelle), and I at my grandfather's house last weekend enjoying his last view. He asked my uncle to reposition his bed so that he could look out and see this beautiful lake.

The following is my capstone project for my minor in Social Justice. Join me when I present on Founder's Day at the University of Portland. Yay! It also means I just finished my minor in Social Justice!

    It is no mystery that the death and dying process is one that we will all confront at some point in our lives whether it be our own death and dying experience or those around us. The purpose of my research has been to reflect upon and observe the qualities that contribute to a more dignified death and dying process, to understand the roots and methods of palliative care, and to advocate for a more dignified dying process for “the others” in our society. It is my assertion that in allowing someone to die with dignity, motivates individuals to live to a greater degree with dignity.

    Preliminary to the discussion of death and dying, it is imperative to discuss our terms. Death and dying is a heavy and ambiguous topic. Psychologically, the dying process begins when the knowledge of death becomes a reality for an individual and death is the eventual consequence of that dying process. Psychologists observe the course, the social support, the level of pain management, the amount of control a patient has over their medical course, and the family and friends experiences to understand the process of death and dying. Similarly, the fields of social work and nursing within the palliative medical field address a holistic vision of the death and dying process taking into account the multidimensional aspects that psychology aims to study and implementing them into practice with patients and families.  Lastly, in the theological discipline, death and dying is more often a constant cycle throughout an individual’s life. It is not separated by the eminent earthy death, but is reflected in the spiritual death of an individual. For the purpose of this paper, I will be focusing only on the Catholic understanding of death and dying.

    Equally important to the academic understanding of death and dying, I believe is my own context of death and dying. Throughout my paper, I will discuss four personal experiences from my own life that reflect my understanding of the death and dying experience both in the United States and in Costa Rica. These experiences will be used to better understand the disparities between different communities through the death and dying process and in addition, will highlight the complexities of the role of social justice. Names and specific facts about patients have been changed in order to maintain the sanctity of their life after death with the exception of my own grandfather whom I feel would have been pleased to be included with no adaptations.

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Pablo Freire, author of The Pedagogy of the Oppressed, said “Any situation in which some men prevent others from engaging in the process of inquiry is one of violence;… to alienate humans from their own decision making is to change them into objects”. This certainly holds true in the dying process of many Americans in the United States today. As a hospice volunteer, I have had the opportunity to accompany individuals on their path through the death and dying process. One individual, whom we will call Andrew, highlights the disparities in social support and the desperation for a sense of control over his end of life battles.

I first met Andrew when he was already in severe pain as a result of his dying process. He was in his mid-thirties, was suffering from liver failure, and was a veteran for the United States military of Spanish descent. As my time with Andrew continued, I learned that he had been previously homeless for over ten years, that he had not had access to medical care for that entire time, that he was raised by a single mother in Spain who was a gypsy, and that he had only a fifth grade education. After three months at Andrew’s bedside, giving him massages and watching movies with horses in them, I learned that I was Andrew’s only friend. During my Spring break, I went home to San Diego to visit family and made sure to tell Andrew that I would be back--he told me he would wait for me. When I got off the plane a week later, I immediately drove to Andrew’s home to spend time with him. When I arrived, I combed his long hair, I rubbed his back, and woke him with a smile. Andrew smiled, extended his arm to hold my hand, and sat peacefully until he died five minutes later. Following Andrew’s death, there was not a funeral or ceremony to remember the gentle person that he was. At this moment, I am certain, I am one of the few individuals in this world that will ever know his real name or his powerful smile.  

But what does the life of Andrew mean in the greater scheme of things? Andrew’s lack of medical care, social support, and his following lack of a ceremony explicitly support the disparities present in the lives of many impoverished individuals who will die without the closure that is possible in the process of death and dying. The beauty of Andrew’s story is despite the loneliness that he endured throughout his life, he did not die alone; Andrew’s story is one of dignity. When I imagine my own dying process, I am sure it is similar to many other middle class Americans. I imagine being surrounded by my loved ones, I imagined being embraced by my partner, I imagine being elderly. This was not the case for Andrew and I would argue that given greater strides towards social justice, it could have been.

In fact, a study on Dignity Therapy evaluated the success in trying to increase the dignity of patients during their dying process. Dignity Therapy is designed to “bolster the dignity of patients nearing death” (Harlows). It is an individual psychosocial therapeutic intervention with a 76% success rate among patients. The therapy was developed in response to the data that suggests that a lack of dignity during the dying process had increased levels of psychological stress and higher ratings of pain. The most vulnerable to being prone to having less dignity were individuals that report feeling depressed and those whose physical health status deteriorates to such a degree that they become dependent on caregivers. Dignity Therapy consists of a two step process. First, the therapist asks the patient a series of questions in order to discuss what might be an anxiety during their dying process. Second, the therapist helps the patient confront the outcomes of the initial questions. Often, this means conversations with family members or diving into spirituality. The results of this study suggest that heightening the dignity of the human person is not just a moral or spiritual obligation but also is necessary in aiding medical care.

Therefore, if Dignity Therapy and furthermore palliative care is a promising component to increasing the vitality of life, how should it be implemented? This was precisely the question that Florence Wald posed in the early 1970’s. Florence Wald is the founder of palliative care in the United States; she opened the first Hospice in Connecticut in 1971. Fifteen years later, more than 1000 new hospices had been started following her success. Hospice care in the United States “represented a paradigm shift in the medical treatment of the dying” (Adams). After World War II, it was common to seclude the dying to the back of the hospital where they were to sit until they passed. Hospice care, brought the comfort of dying in your own home to medical care and also increased the awareness for maintaining comfort while dying with palliative care. As a nurse, and what people would now argue today, a social worker as well, Florence Wald advocated for the importance of dialogue between practitioners and patients. She revolutionized the hospice care team inviting chaplains, psychologists, and volunteers to participate so that patients had access to the most dignified death and dying process. Integral to our discussion of social justice, Florence Wald centered her leadership around a reverence for life and a need for justice.

Florence Wald’s example of leadership bringing different disciplines together to achieve positive social change is instrumental. Two summers ago, I traveled to Costa Rica to explore the issues of poverty and the disparities in education between individuals in Costa Rica and my home in the United States. While there, I became close friends with many of the families. One in particular had just experienced a difficult loss. The young man’s name was Maicol, he was nineteen. Waiting at the bus stop, he dribbled his soccer ball. When the ball accidentally rolled into a puddle, Maicol went to retrieve it. Maicol did not know that a live wire had fallen into the puddle and he was electrocuted while his brother watched helplessly. As a young adult myself, I cannot begin to fathom that life can be so normal at one moment and gone in a second. I was in Costa Rica for the three day funeral that followed Maicol’s death and witnessed the abundant love of his family.

I tell the story of Maicol to illustrate that the issues of social justice are deep but also to highlight the particular pathway of this discussion. The issues of poverty that led Maicol to have to take a four hour bus to work at a small paying construction site each day are debilitating. However, paramount to this discussion is the dignity of an individual’s process of dying and death. While Maicol’s dying was unnecessary and unexpected, his death was honored in the rejoicing for the life he had. Therefore, giving an individual dignity after their death, also allows the community to celebrate the importance of dignity in their lives. Maicol’s grandmother, Berta, happily collected fake flowers from trash cans to honor his grave. Maicol will be remembered.

It is here that the tension between the life experiences of Andrew and Maicol becomes alarming. Andrew will not be remembered by a family of individuals and his grave will not be decorated. In our culture, the degree to which we are remembered often quantifies society’s perception of what we were worth to society. Does this mean that Andrew is nearly worthless? While I would strongly deny that this is the truth, I do believe that it is the duty of social justice advocates to give individuals like Andrew the dignity of worth despite their social standing. Andrew deserved to be loved while he was alive and too many of the people in the Portland community denied him that love; it was of no fault on Andrew’s part that he died with one friend. It was the fault of his community.

From a theological perspective of the Catholic Church, Andrew’s inherent dignity was denied before his dying process was able to begin. The Second Vatican Council emphasized the dignity of the human person as an official Catholic Social Teaching. The Catholic Church teaches that the dignity of the human person comes from God, not the gender, sex, social class, race, economic status, or ability of the individual. For this reason, Andrew deserved the love and respect of his community. Therefore, Catholic Social Teaching would argue as Bishop James T. McHugh eloquently says, “No life is of inferior value, beyond protection or sustenance. The law must be the guardian of each person’s life and rights, and it must apply equally to all”. The role of social justice according to Catholic Social Teaching would be to provide the security of dignity through the dying process to all individuals.

However, social justice remains the issue. What is the role of an advocate for social justice? Given the disciplines of psychology, social work, nursing, and theology, a social justice advocate would argue for the inherent dignity of an individual and support their death and dying process with social support and systems of support. This task to many seems daunting. What could one individual do to increase the dignity of the dying? I argue that this task begins at a personal level and extends to the community.

As an individual, it is imperative to focus on enhancing your own dignity while you are still living. This can be attained through reflecting on your needs and being assertive in approaching them, surrounding yourself with humble and grateful friends, making time for spirituality and reflection, and approaching life with meaning. Perhaps the most ambiguous of these suggestions is to approach life with meaning. An individual who approaches life with meaning values the relationships in their lives, strives to be happy, and infuses meaning in their own life by giving support to others.

The second step to increasing the dignity of the dying is to reach out to expand the dignity of your loved ones. Three weeks ago, my grandfather was diagnosed with mesothelioma, a cancer caused by asbestos. After a two week battle, he passed away surrounded by his wife and children, and grandchildren. Primary to the dignified death of an individual is just being there. This certainly does not mean physical presence although it is valuable. It means emotionally sitting with an individual who is dying and walking the path with them in solidarity and compassion. In addition, it is important to allow your loved one to continue to make choices. Just because someone has entered the dying process does not mean that their autonomy is already deceased. We must learn to be comfortable with the silence of death; often there is nothing to be said. Lastly, it is okay to talk about your fears and your loved one’s fears. In fact, it is a welcomed suggestion and can often provide closure similar to the results of Dignity Therapy.

The last step to offering dignity to the process of death and dying is to assist in promoting dignity to “the other”. This may be someone who you have yet to know closely, it may mean someone from a different social class, race, religion, sex, or gender. Perhaps one of the greatest examples I have seen of promoting this dignity to “the other” has been at the Down Town Chapel, a church serves the houseless population in the Old Town area. In February, a long time guest of the Down Town Chapel passed away. He had been living on the streets in Portland for the last three years and he was known for a constant smile and a big hug. At about three hundred pounds, the doctors had been telling him for a long time that his risk of cardiovascular disease was strikingly high. His life situation however prevented him from seeking a healthier diet and access to more interactive health care. When he passed, I attended his service as a friend. I was surprised to find that two hundred other individuals found themselves in the same room as me, honoring the man that he was. This example shows that being in a place that society deems to be lower does not mean that you cannot receive dignity during the process of death and dying. Communities are able to rally together to build the dignity of individuals and therefore transform the dignity of their community.

The transformation of our society’s perception of the other in creating dignity for them is the ideal of social justice’s interaction with the process of death and dying. The dignity during the process of death and dying of the other can be increased by listening to individuals so that they may have a voice when they are silenced, advocating passionately for their rights, and giving them the gift of remembering their presence.

Works Cited

Adams, Cynthia. “Dying With Dignity In America: The Transformational Leadership of   Florence Wald.” Journal of Professional Nursing 26.2 (2010): 125-132. PsychINFO. Web. 25 March 2013.

Lingis, Alphonso. “Dignity.” The Humanistic Psychologist 38.3 (2010): 267-268. PsychINFO. Web. 1 Apr. 2013

McHugh, Bishop James T. “Library: Death and Dying Issues-Catholic Culture.” LIbrary: Death and Dying Issues- Catholic Culture. Catholic Culture, n.d. Web. 20 March 2013

Mike Harlos, et al. “Learning from Dying Patients During Their Final Days Life Reflections Gleaned From Dignity Therapy.” Palliative Medicine 24.7 (2010): 715-723. PsychINFO. Web. 1 Apr. 2013.

The Dignity of Death and Dying: Prezi Presentation

 Here is a glimpse into my academic world. In a week, my school has a day of presentations for capstones and research papers, I will be presenting on the Dignity of Death and Dying for my Social Justice minor capstone. The following is my presentation; I will be sure to post the paper that is to follow.

    If anyone would like to join in Founder's Day and be present for the presentation, it will be at 11:15AM on April 9th at the University of Portland in Buckley Center, room 111.

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