Comments (3)

Younger Person (Emma Levene- Nevel): "Naima- Let me start by saying that you are truly a wonderful writer. All of your pieces are a beautiful mixture of thoughtfulness, personal experience, and amazing insight. I think that this piece offers an interesting perspective regarding an aspect of illness that is often ignored. In your discussion of "The Motorcycle Diaries" (which I really want to see!), you mention multiple instances in which Che acknowledges that the "lepors" are being stigmatized for their illness and thus isolated from society- not because they have to be isolated, but because the community can't and won't accept them. I think that Che's resistance to this inhumane treatment is indicative of his passion for social justice and his recognition that everybody, even those with mental and physical disabilities, are just as human as everybody else. I think that you share those same beliefs, which are reflected in this piece. I think that your connection to cancer is also really interesting. If you were to elaborate on this piece, I think you could elaborate on how, specifically, people with cancer become isolated from their surroundings, maybe using your personal experience to develop your points. Overall, I think the piece was very well written, and I can't wait to read more!"


Older Person (Joaquin Noguera):
"I appreciate how you tied it all together in your closing sentences, Naima. Using Che's language to describe those that not only empathize with the I'll, specifically cancer patients and survivors, but in doing so also combat the stigma surrounding those with such illnesses, you inadvertently praise the "wise" for their greater understanding and encourage the reader that taking such an approach is to do good! I too love the concept of treating or viewing those who see the human behind the illness as "wise folk", almost more evolved or awakened/enlightened beings. I think everyone is "wise", in this way, in some aspect of their life. Too often, people confine their "wisdom" too only a few aspects of their reality. Too often does that wisdom not transfer over to other parts of life. This empathy, this wisdom, is one major distinguishing feature of humans and the "most wise" know that there are few aspects of our lives where it should not apply. I would argue that whether the issue is war, health control, immigration, crime and punishment, etc, our ability to listen, care for and about, and empathize with others can be a measure of a peoples evolutionary development.

Let's all work on being a little more wise, Eh?

Thanks Nai.

Love,
Joaquin"

stigma and leprosy

I would like you(the reader) to please excuse me for not devoting as much time as I would have liked to this project on the exploration of illness and dying. I have not been feeling too well myself the past few days, so I gathered my research on the resources that I had in my home: my computer.

Not feeling well made me think more about sickness and how it can define your identity if the illness is severe and prolonged (unlike mine). This got me thinking about the concept of stigma and how it relates to sickness and has affected the way we treat people in our society. Although there are many ways in which a group of people may be stigmatized- homosexuality, obesity, criminal records, disabilities, race, religion, etc.- sickness has been one way in which groups have been stigmatized and shunned throughout history. But not all illnesses lead to stigma! Some illnesses like heart disease and diabetes generally don't result in the person with the affliction being shunned. We often think its unfortunate that they are sick and take pity on the people, but we are less likely to feel disgusted and want to avoid them. However, there are other illnesses that evoke deeply rooted reactions among people. For example, syphilis, HIV and other sexually transmitted diseases often bring out a moral reaction and judgment. So too diseases that disfigure a person's body and face such as elephantitis and leprosy (now known as Hansen's disease).

I was reminded of how people with leprosy have historically been stigmatized on Friday night. That night, the love that I had for the actor Gael Garcia Bernal was once again rejuvenated by watching two of his films. Having been glued to my bed, my only source of entertainment came from Netflix, a long lost friend. First I watched The Science of Sleep, and then I watched The Motorcycle Diaries. The Motorcycle Diaries tells the story of young Ernesto "Che" Guevara and Alberto Granado; two young Argentine doctors who tour South America on their motorcycle and on foot. It chronicles their journey through small towns and villages in the Andes and the southern cone. In one section of the film, the two doctors find themselves in San Pablo, Peru, a remote village in the amazonian region that is also a lepor colony. 

Ernesto and Alberto are brought to the colony by boat, led by another doctor. They are handed gloves and are told not to touch the patients. Ernesto asks whether or not the people are contagious and is told "not by touch," He then asks why he needs to wear the gloves and refuses to put them on. The remainder of this part of the film focuses on Ernesto and Alberto's refusal to accept the stigma of the lepors. They do this largely by treating them as if they were regular humans (how they should be treated!) For example, there is a scene where the Argentine doctors play a game of soccer with the "lepors" and the people are clearly enjoying themselves, for what seems like the first time in many years. Even the nuns, who worked among the "lepors" try to discourage Ernesto and Alberto from eating and spending time among them. Like the other health workers, the Argentine doctors are expected to live on the opposite side of the river, apart from the lepors. In one of the most dramatic scenes in the film, Ernesto decides at his birthday party that he would rather celebrate with the lepors than the so-called "normal people". There was no way for him to get across the river so he decided to take a big risk and swim to the other side. 

Ernesto's action made me think that the best way to counter stigma is to treat people humanely- as if they were normal. According to Erving Goffman in "Stigma and Social Identity," Ernesto is a "wise" person who acts as a bridge between the stigmatized lepors and the rest of society. He writes: "I have considered one set of individuals from whom the stigmatized person can expect some support: those who share his stigma and by virtue of this are defined and define themselves as his own kind. The second set are- to borrow a term once used by homosexuals- the 'wise,' namely, persons who are normal but whose special situation has made them intimately privy to the secret life of the stigmatized individual and sympathetic with it, and who find themselves accorded a measure of acceptance, a measure of courtesy membership in the clan. Wise persons are the marginal men before whom the individual with a fault need feel no shame..." By refusing to wear gloves and risking his life to celebrate his birthday with them, Ernesto showed that he was sympathetic toward the "lepors" in a way that was different even from the nuns and other doctors who helped them. Ernesto chose to treat the "lepors" as though he were no better than them and because he did, he was accepted by them.  

After reading Goffman and watching the Motorcycle Diaries, my mind went back to how our society deals with people who have other forms of illnesses like cancer. Cancer may not be like leprosy in that people who have cancer are not physically isolated nor are they shunned by their communities. However, people with cancer often say that the only people who understand what they're going through are other people who have been diagnosed with cancer. In this way, they can become socially and psychologically isolated from family and friends who may not understand what its like to cope with an illness thats eating away at your body. Because of progress in modern medicine, there are a growing number of people who survive from cancer. There are also a lot of people who have family members and loved ones who have suffered from cancer and in some cases died. Some of these people become "wise" like Ernesto. And like Ernesto, they can be advocates for countering the stigma against cancer patients.

Comments (2)

My partners hadn't done the assignment, but...


Younger person (Cai Oglesby):
"This was incredibly emotional and beautifully described. I love the idea of isolation making such a big difference in the process of death. I'd never thought of it like that before, but it makes so much sense.


However, couldn't this idea also be reversed? Not to be morbid, but why does being surrounded by happiness make it easier? Shouldn't that make it harder, since you know you're going to have to leave all your loves behind? Whereas if you're unhappy in your last years, you can be looking forward to an end to that pain instead. I'm not sure which I agree with but that's just something to think about."


Older person (Joaquin Noguera):
"Oooh, I like what Cai wrote.

This might be my favorite of your writings so far. The descriptive language used to provide the reader with what you experienced when you saw Tio Ricardo is very well put together. You describe his face, how clothe looked on his body, your feelings... and you involve the senses which really allows the reader to feel present.

The two paragraphs that follow are also well done. You provide the reader with a vivid description of the exchange that took place on the couch. Knowing Tio Ricardo and Grandma, I felt like it was a scenario I had seen before many times.

You have an ability to make your words into something more Naima. Not everyone knows how to use words to make people FEEL. Good job with this one bebe.

Cool feedback: I think that many would benefit from a translation of EACH statement you present that is in Spanish. I may be wrong but I remember only 1 of your statements in Spanish being translated.

Love you,

Joaquin"

Visiting an unwell person

During my winter vacation, I went to Peru with my grandmother (I refer to her as mama).  Unfortunately, she was only pleased when I hung out with her and her friends who were all people her age (she’s 80 years old). Because of her possessiveness, I was able to visit many elderly people who were quite sick. Each visit began with mama"s friends telling me I look exactly like my mother. This would be followed by “I haven’t seen you since you were this big! (motioning with there hands close to the ground).  Then finally, my grandmother would tell her friends a story about how much trouble she had getting me from the airport or another story that I had heard already. 

The visit that stuck out for me the most was when we went to see my tio Ricardo. When I had visited Peru in my younger ages, we always stayed at his house. I remember that tio Ricardo would always buy my brother and I Sublime’s (Peruvian chocolate), and often took my brother and I to the arcade and parks where we could release our childhood energy. I always thought of my tio Ricardo as a man of much strength and power. I began to think about some of the stories that my father told me about my mother's past. My uncle was one of my mother's guardians when she was younger and the only father figure she knew. He was often portrayed in these stories as a strong, strict man.

This visit to see my uncle was different from the many others. Mama now has an apartment not far from his in Miras Flores.  This time we stayed there instead of my tio Ricardo’s home. The last time I went to Peru was the summer before ninth grade. I went with my brother on a program called Visions.  We went with other high school students to the Andean highlands of Peru to build a school and brick ovens in a town called Urubamba. After our program ended we spent a week with mama in Lima.  At the time, she and tio Ricardo were in the midst of a feud, and visiting him was out of the question. They were on good terms before I visited this time, and she was eager to visit him, which we did on my second day in Peru. 

When we arrived his apartment, we rang his doorbell, and it took what seemed like forever for him to open the door. While we waited in the hallway of his apartment building for him to welcome us, I heard a cane tapping the floor and the sound of feet being dragged. Opening the door, his eyes gleamed at the sight of his sister and grand niece, and he embraced us both. I noticed that his hair was as white as I saw it last, but everything else was different. His cheekbones stuck out, eyes sunk in, and his skin yellowed. His pants hung loosely on his legs, and it appeared as though he had lost about 30 pounds since the last photo I saw of him, which was not that long ago. When he put his arms around me, I could feel the bones beneath his shirt and I was sure that he had become frail, and I grew uncomfortable.

 What surprised me most about seeing my uncle was his isolation. Although he had family and friends throughout Lima, and a wife that he was estrange from, at the age of 86, my tio Ricardo lived alone. His isolation seemed to add to his vulnerability. I imagined that on days when he felt tired or weak, there was no one there to cook him a meal or even bring him water. I also thought that if he were lonely and wanted to speak with someone, he wouldn't have anyone to share it with. Unlike Morrie, who was surrounded with people during the last years and months of his life, my tio Ricardo lives alone and keeps his suffering to himself. 

My grandmother bought him a large box of See’s famous chocolate. He smiled and told her that he was thankful, but he’d hardly started the one she brought him months before. I had trouble understanding him when he spoke. At first i thought it might be my Spanish, but then I realized that his words were slurred. This might have been due to the teeth that were missing from his mouth or the medication that he had been taking. He sat on his couch, and I consciously choose to sit across from him while mama sat at his side. Mama was in mid sentence of telling my tio about her favorite show- Doctor Phil, when she abruptly excused herself to use the bathroom. My uncle looked at me and motioned for me to sit next to him. I walked over to the couch where he sat, and it was then that I noticed he was almost blind. I hadn’t brought my glasses with me that day and so I wasn’t able to absorb in full detail my uncle’s condition. He asked me to bring my face close to his, and I followed his instructions. “Pareces igualito como to mama!” He said, and then kissed me on my cheek and began to cry. His hand reached up into his sweater, and he pulled out a napkin. “Es mi culpa.” My arms touched his shoulders as he continued to cry, and tears began to slip out of my eyes. He repeated my mother's name, “Patricia, Patricia.” When mama returned from the bathroom, she noticed our tears, and handed us tissues while my uncle wrapped up our session. “Entonces, a donde van a almozar?” he asked where we were going to eat. I excused myself and walked out over to the balcony. Down below I saw miniature Nasca lines in the park, where children ran, trying to find their way back to their mothers.

I shot some photos and then returned to the room where they continued to speak about food. The conversation went on, even though my uncle didn’t eat much these days. When it was time to leave, my uncle made no promise of seeing me soon. He embraced me once again right before I entered the elevator and I said "Cuidate". He smiled and walked back to his apartment.

I realized during my brief visit with my uncle that I was overwhelmed with sorrow for him because his isolation seemed to add to his suffering. It also made me think about how different Morrie's last months of his life were because he was surrounded by family and friends. Maybe it was this social support that made it possible for Morrie to be so accepting of his death. At least in his last days, he had the comfort of others and knew he was loved and appreciated. 

Looking back and forward in our unit

This illness and dying unit has provoked a lot of thoughts that I had unconsciously chosen not to confront and analyze. As I have written in several of my blog entries, I have had a personal experience with death having lost my mother. Through the readings, films and class discussions I've developed a deeper understanding on illness and dying and the way these issues are perceived in our culture. I've also begun to develop a more concrete perspective on the issue of mortality and I've become clearer in my critique of the way our society handles issues related to illness and dying.

Some ideas, insights and items of information that I've learned in our illness and dying unit so far...

• "Doctors with the highest percentage of denials get a bonus." (Sicko)

From the movie Sicko (Michael Moore, 2007), I have developed an understanding of the ways in which corporations have distorted the health care system so that it favors the wealthy and those lucky enough to have good health insurance. Michael Moore's film showed me that America's health care system is in many ways corrupt and unjust.  Instead of being focused on how to insure that people receive the best possible health care, the corporations that run the health care industry are more concerned with maximizing profit. 

• When people become fatally ill, they are expected to be ashamed of their decaying bodies. Its seen as abnormal if they're not. (Tuesdays with Morrie)

Unlike the majority of people, Morrie grew to accept his decaying body during his final months. At first he was ashamed that he had to depend on other people to "wipe his ass." Later he chose to think more positively about this and compared the needs of his old age to those of babies.

• Our culture looks for technological quick fixes rather than solving the root of the problem.(class discussion) 

This is a pervasive problem seen in all of the areas we've discussed over the course of this semester. For example, during the food unit, we watched Food Inc. where they showed how instead of feeding cows their natural diet, they're given unhealthy food substitutes that harm them and the environment. As the "quick fix" they drown the meat in ammonia to clean it instead of practicing sustainable farming and feeding methods.

• There is a large disconnection that humans tend to feel from illness and dying.(Tuesdays with Morrie)

People also tend to see themselves as detached from nature, and don't understand the nature of dying. I've also come to understand that when people grow ill to the point of death, their bodies slowly decay, which society doesn't view as normal and thus feel very disconnected from.
 

The source that has been most helpful for me was the book Tuesday's with Morrie because the author focused the attention of the book on Morrie's critiques and insights about dominant social practices. I also found that it helped me a lot because I was able to relate to Morrie in a weird way, and I often found myself thinking about something that he said.

The book provided me with flashbacks of my mothers illness, and I was able to compare and contrast Morrie's story to my mother's. Morrie's willingness to accept his death, even as he simultaneously seeks to fully experience every aspect of life before he dies, is an approach to mortality that I hadn't considered before.  Through this, I realized that death's permanence isn't the only element of reasons why we haven't learned to accept death.

In the final weeks of the class I think its important to take a less Eurocentric perspective on these issues. I would be interested in learning about how cultures beyond American and Canadian face and understand illness and dying. Additionally, I think we should explore holistic forms of medicine, and how certain societies have chosen to take that approach. I hope that we can explore this through research and classroom discussions where students would be able to share stories from their own cultural backgrounds.

Tuesdays with Morrie (part 3)

I am reading Tuesdays with Morrie, written by Mitch Albom. Doubleday, a division of Random House Inc. published it in 2007.

Precis

  

Tuesdays with Morrie tells readers worldwide about the end of a life of a professor named Morris Schwartz. The story is told by one of Morrie’s previous students, whom he taught years before he was diagnosed with ALS. After graduating from college, Mitch experienced the death of a loved one. This loss led him to stop pursuing his dream of becoming a musician. Instead he became a columnist who found more importance in his work than in the relationships that he had before. This included his relationship with Morrie. 16 years after graduation, he recognized Morrie on his TV set, while he was being interviewed about his upcoming death. Stirred by seeing him again, Mitch paid weekly visits to his old professor- which they referred to as their classes. The subject of each class was the meaning of life, and each meeting and discussion Morrie shared his perspectives and experiences with regrets, death, family, emotions, aging, money, love, forgiveness and reflections on our culture. The book is constructed in the form of a class- with each chapter flowing as if the book were a class itself- it began with the curriculum, followed by the syllabus and the discussions, and ended with “graduation”- Morrie’s death. 

Quotes and Responses

“Here’s what I mean by building your own little sub-culture,” Morrie said. “I don’t mean you disregard every rule of your community. I don’t go around naked, for example. I don’t run through red lights. The little things, I can obey. But the big things- how we think, what we value- those you must choose yourself. You can’t let anyone- or any society- determine those for you. Take my condition. The things I am supposed to be embarrassed about now- not being able to walk, not being able to wipe my ass, waking up some mornings wanting to cry- there is nothing innately embarrassing or shaming about them”

Morrie questions dominant practices of the larger culture that we live in throughout the book- and he recognizes that the way he thinks is different than most people. Mitch shows how most people, including himself, abide by the norms of society without thinking twice about it. Morrie relates this questioning of dominant social practices to himself in his dying stage and recognizes that he feels no shame in the decay of his body, although people usually do. Morrie constantly draws connections between old people and babies- both are pampered and are shown attention and love. Instead of feeling shameful that he must depend on others, he transitioned this feeling into a feeling of acceptance- and feels pleasure in the care he receives. 

“It’s natural to die,” he said again. “The fact that we make such a big hullabaloo over it is all because we don’t see ourselves as part of nature. We think because we’re human we’re something above nature.”

Unlike many people, as death drew closer, Morrie grew more accepting and less afraid of it. He says that we believe we’re something more than nature- as if a higher power. I thought this was an important point, and could explain the destruction of our planet (along with greed, money, power, ignorance, etc.) So many of the decisions that we make about how to live are influenced by our present needs and desires. Little thought goes into how future generations or even the animals and plants, who share the earth with us, will be affected by the decisions we have made.

“Death ends a life, not a relationship”

Morrie tried to explain, in simplest terms possible, that his death would not mean the end of the bond that he and Mitch shared. Morrie will continue to live on in Mitch’s memories and the influences that Morrie had upon him.

Its easy to understand that a life often leaves a legacy when the person who dies is someone famous like John Lennon or Michael Jackson but I know that I will always remember my mother, even if she is not remembered by many others. Like Mitch, I learned valuable lessons from my mother that I still carry with me. Even though I didn’t keep a tape recorder or a journal of notes where I recorded my mother’s words, I have photos that allow me to remember who she was and what she was like before she got sick.

Tuesdays with Morrie (part 2)

I am reading Tuesdays with Morrie, written by Mitch Albom. Doubleday, a division of Random House Inc. published it in 2007. I focused on chapter twelve and thirteen: The Professor and The Fourth Tuesday.

Precis

Mitch introduces Morrie's life before he became a privileged professor of sociology. Both of Morrie's parents were immigrants, and a lack of money was one of many challenges that faced their family. Morrie's mother became ill and passed away when he and his brother were young. His father was left to take care of the two boys by himself, while still struggling to support the household. His home became a depressing place, especially when his brother became sick with polio. For a time, Morrie looked to religion in hope of bettering his family from the poor conditions they all lived in. When Morrie's father remarried, the new wife brought a stronger balance to the home that had been absent after his mother passed away. She provided love and care to Morrie and his brother. She also encouraged them to see that education could be an escape path out of poverty. This is where Morrie's passion to learn began.

Morrie shared freely his ideas about death and what he felt made life meaningful with Mitch. Although Mitch was a young, healthy person, he was willing to learn. Morrie's ideas and insights helped Mitch to reflect on how he viewed his own life.  Morrie studied the practices of living and dying used by people from other religions and cultures. For example, Morrie learned that Buddhists strive to live every day as though it were their last. From his reflections on life and death, Morrie comes to the following realizations: people don't think about death until they're in the position to die; people are deluded into believing that the pursuit of careers and money are more important than the people they love until they come to realize that they may lose them. To emphasize this point, Morrie explains to Mitch that he appreciates the view outside of his window more than Mitch does because he knows that his time for looking out of windows is coming to an end. Mitch makes an attempt at feeling what Morrie feels, but can't see what Morrie sees, so he gives up.

When confronted with the reality of death, Morrie realized that even the small things in life that are so easily ignored are important and should not be taken for granted.

Quotes and Responses

"He did this to keep her memory alive. Incredibly, Morrie had been told by his father never to talk about her... For years, the only evidence Morrie had of his mother was the telegram announcing her death. He had hidden it the day it arrived." 
This early experience with death had an impact on Morrie and influenced the way that he looked at his own death. Morrie's father chose to erase memories of his wife because it might have been easier to handle and deal with his emotions, but this choice to not speak of Morrie's mother caused Morrie to be doubtful, and caused her memory to become cloudy. He understood that death's permanence brings doubtfulness, and holding on to memorabilia is important. This is why he allowed Mitch to document the end of his life through their meetings because he realized that even these conversations had value. 

"To know you're going to die, and to be prepared for it at any time. That's better. That way you can actually be more involved in your life while you're living." 
Morrie wanted to be able to live more fully, and realized that to do that, he would have to be accepting of his death, and "prepared" to die. I'm not so sure how a person could actually prepare for their death.

"Once you learn how to die, you learn how to live" 
I thought that this was the most important thing that Morrie said. It summed everything he had been saying into one concrete statement. I interpreted it as once somebody is aware of their imminent death, they are more likely to cherish each moment, and understand that time is precious. Through this, they take the small things in life as well as friends and family less for granted, and find the beauty in things that others wouldn't, like the window. Death gives people more appreciation for their lives. 

I felt like I could relate well to the idea that one must appreciate the small things in life as to not take things for granted. When my mother passed away, I was sensitive about any of her possessions being misplaced or given to anybody but the immediate family. My father had sent off some of her remaining clothing to his sisters, and as a result, I grew really angry. My father felt like he was just cleaning the clutter in our home, and I felt like he was removing my mother, even though she was already gone. Unlike Morrie's father, I am able to speak freely about my mother, which I can sincerely appreciate.