HW 27 - Visiting an unwell person

As we pulled up to his house, there was an scent of familiarity in the air. We knew what was coming next, he was going to be really excited to see us, but it would turn to tears and us consoling him about how he shouldn't be sad because we were all there. He is 88 years old and he has neuropathy in his right foot. Neuropathy is when the nerves are damaged by disease or by a chronic condition. In his case it stemmed from an infection in his foot that eventually claimed his big toe and the ball of his right foot. He is on constant medication and he knows he is aging fast. So after we passed the usual conversation, we moved back to his outside porch and sat down in the warm sun. He said as he always does "I'm getting old Steph." As he refers to my mother. We always joke about how he is going to see my graduate college and even my first child, but he knows that isn't true. No one lives forever. His house is very neat and well organized. He has enough canned food to last him for another 100 years that he will never eat. His freezer is stocked with home cooked, frozen meals, and his fridge has more junk food then ours does, but no matter how much time has passed, it seems like it is always the same.

He lives like he wants everything to be in perfect order when he dies. It is clear that someone lives there, but it isn't clear if they are actually living. It feels like a museum that has shag carpeting. We ask if he would come to lunch with us. He responds with "i do what i want to do." So we ask if he would please come to lunch with us. He does, and he has a hot dog. When we get back to his house he complains about how he doesn't like to go out because the food upsets his stomach. It hits me, this is a man who is always on some kind of medication, has to watch what he eats, and knows he is old. He is still a respectable man, he is very smart and he can still think and speak for himself, but he can't really hear that well. So i think to myself, if people know what this is like when they get old, why do they bother? I don't think i can deal with living like that for myself.

How does someone come about being like that? Is it a process that you don't really notice until one day it floods you? Or do you see its slow and dark approach? When they do realize, why do they continue to live like that? On my flight back home i think i discovered the answer that i was satisfied with. I think that when you get to that age, you know that you are dying and it is scary. It is like holding on to a ledge and someone telling you to let go, but you don't know what is below you. The only difference is that this is death. I can understand why this man we visited wouldn't want to let go. He likes where he is. I would be willing to compromise on my health and well being to still be alive. To just have one more day and see the people i love because they make it all worth it. He takes his pills every several hours because they are what keep him alive.

Most of the time we just sat around his house and watched TV or talked and joked about past memories. When it came time to leave he stood on his doorstep and with his hands behind his back he would watch us drive off. Both of us weren't sure if we would ever see each other again. It's a feeling you can never describe because you haven't lost anything yet, but you want to freeze time so that one moment will last that much longer, but it wont so you do your absolute best to commit it to memory before you forget it. That is what i think that people who are dying are trying to do. They want to remember the way they had lived and correct any faults they may have committed because regardless of your religious orientation, no one wants to die with a tarnished conscious. The "unwell" person who i visited is no exception, that is why he continues to hang on even though he knows he isn't completely happy. But he knows that even the most unsavory of tasks must be completed.

HW 26 - Looking back & forward in unit

• Sometimes we aren't afraid of dying, but afraid of what will happen to others because we die. (My Mother)
• You can't avoid death, but you can value the time you do have (Beth Wood)
• The American way of life is really something of a rarity and other countries there isn't just bad health care, but a complete lack of it. (Mountains Beyond Mountains)
• We live in a country where our health care denies service to the people who need it to make money. (Sicko)

For me HWs 19 and 21 were the most insightful to do because it gave me the perspective of what dying is, from people who had witnessed it first hand. They brought to light how people feel when they are dying and what they want and what they think. They showed us extremely personal moments of weakness and hoped that we would be able to learn from what they had to share. These were two different, but somewhat ordinary cases, two deaths from cancer. By being able to hear these stories, i was able to discover deeper meanings to what it means to live, and then die.

What i really want to know is what is death like. I know there is only one way to find out, but i feel like death isn't something that anyone can ever fully explain because the only way to find out doesn't allow you to ever repeat it. The reasonable question i have is what do people associate death with? What is the first word that comes to mind when someone says death to you. Do they picture a skeleton in a hood with a scythe? Do they picture falling asleep? Maybe even a tombstone. By looking at what people associate their fate with, maybe can begin to understand why people are living the life they are living.

HW 25 - Response to Sicko

Sicko Precis: We live in a country where the rich use the poor to get richer. The powers at be created a health care system that abuses the poor by overcharging them for health care that wont actually "care" for them, by implementing a privatized health care system that operate by "less care is more profit." Meanwhile in Canada they have public health care where they can walk in to a clinic anytime and get completely free health care. Here, to reattach a finger it would have cost $60,000, there it was free. In England and France it is the same thing, they operate not under, "Ask yourself what you can do for your country, but what can your country do for you."

In the part of Sicko i saw in class, Michael Moore was trying to prove that our government was being corrupted by the health care industry. Some evidence he used was :

• On Feb 17th 1971 Edward Keiser presented his "privatized health care system" to president Richard Nixon that boasted "all the incentives are towards less medical care, the less care you give them, the more money you make." The next day, Nixon called for a "new national health strategy."
• Hilary Clinton who once ran against the Health Care industry with a universal health care bill, was defeated after the HMO's spent more then $100 million, and in turn became Hilary Clinton's biggest campaign supporters.

Michael Moore believed that our government was corrupted by the privatized Health Care industry. He presented us with Nixon's meeting with Keiser Permente and the start of Private health care. Then with how one of private health cares biggest opponents became their ally by bribing her with campaign contributions. Dr. Sanjay Gupta checked in on how true Michael Moore's facts really were. One difference between the two different sets of data was that Michael Moore over stated how much waiting time there was for non-emergency surgeries outside the U.S. Moore said that it was a misconception that there were long waiting times for universal health care and then interviewed several people who agreed with him. I then did my own research to see how the two compared and learned that Moore was still off.

"We found that waiting times for an initial orthopedic consultation and for knee-replacement surgery, as measured by patient reports, were longer in Ontario than in the United States, but the differences were not as large as some might have anticipated. A substantial majority of respondents in both countries considered their` waits acceptable. "(http://www.nejm.org/doi/full/10.1056/NEJM199410203311607#t=articleDiscussion)

Although Moore was right on this account, i still disagree with his overall way of presenting his data. He uses fear to persuade us to join him and leave our country behind us. He rips on the government he lives on and his information isn't even 100% correct much less is it persuasive.

I don't personally like Michael Moore, I think that he aggrandizes his points by creatively and with large numbers, hypnotizes his audience by showing them things that confronts their beliefs in a non-confrontational and interesting to watch way. I personally feel that if he has such a big problem with how health care is run, then he should get the f*&k out of this country. He has gone from deep and insightful about issues like gun control and Columbine, to short and nearsighted with his arguments on health care. He does a lot of one sided research into a topic and then very loudly and obnoxiously tells everyone about it. What really angered me about this movie was how he never discussed that the English, French and Canadian citizens pay egregious taxes for their "free" health care. I think that Moore needs to broaden his approach before he begins to make another movie because the sociological effects that this movie have on people who will believe and not question every word that he speaks will just strengthen his army of mindless drones who don't understand both sides of the issue because their leader, Moore, doesn't ever present both sides of the story. I mean whatever makes for a more interesting because in the end, 50% of what you just payed is going directly into his pocket. According to Celebritynetworth.com Michael Moore was entitled to 50% of the profits from the box office release of Sicko which amounted to $24.5 million and all of the profits from the DVD sales which amounted to $17 million. So in total he walked away with $29,250,000 million, not including royalties or merchandise sales. But it puts my mind at ease to know that with all that money he can at least buy some decent health care coverage.

HW 24 - Illness & Dying Book, Part 3

Tracy Kidder, Mountains Beyond Mountains, Random House, 2003

Precis: Paul Farmer met Father Jack when he was in Harvard Medical School. He used to board in his parish. Father Jack was a character, he would play little games on Paul and Ophelia when they would stay there. In the early 1990's Father Jack left his Parish to move to a slum on the outskirts of Lima, Peru. So when he told Farmer he should open a TB clinic, Jim Kim, Paul's right hand man was ready for the task. There was heavy political unrest in Peru between the Government and the Guerrillas. The Guerrillas used the TB clinic as as bedroom, and even blew up the pharmacy that Partners In Health had built for the community. It wasn't long after that, that Father Jack got sick with Tuberculosis and was flown back to Boston for treatment. He died a month after starting therapy, when they tested his disease for drug susceptibility, they found out that his disease was immune to all four of the drugs he was on as well as one other that he wasn't on. The next thing that Farmer investigated was how many people really did have drug resistant TB.

Quotes:

1. "Pel, you wouldn't believe what Father Jack just did. He's hiring all these people because he feels sorry for them, and they can't do the work." (p.131)
2. "Eventually he TB had been cultured and found to be resistant to the four first line drugs. She'd been re-treated again--with those very same drugs, strangely enough--and now she was sick again and coughing up blood. Along the way her doctors had accused her of non-compliance." (p.133)
3. "The air carried a strengthening smell of urine. There were no sewers up there, only bathrooms secluded places among the boulders above the last dwellings. I looked to the north. In the distance i could see a river, a line of green, but all around and high above, only dirt and rocks." (p.136)

This was more then a matter of a friend dying for Paul Farmer, it was that this whole new aspect of a disease had been overlooked because for a global organization to try to come up with personalized instructions for everyone who came up with a disease like TB or AIDS would be out of control. The simple problem here is that similar, if not more intensive care was put forward for Father Jack, but he died because he was immune to the drugs he was given. In a country where we value our health enough to have to pay an outrageous amount every month just in case we get sick and we wont be able to actually pay the hospital. These are people who can't do that, so they take whatever treatment they can get, but these treatments aren't helping because sometimes the system can fail for people because the safety net can never be big enough for us all. The thing is that for most of us, that will never be a problem because we probably wont ever get E Coli or TB, because there are measures put in place to try to prevent that. We read stories about people who that happens to, but its never us. When it is though we always want to implement a serious change so that it will never happen to us or anyone else, because it was a stupid mistake that shouldn't have actually affected anyone, but it did. That is the saddest thing is that it always takes something more serious for us to learn, then if we had just listened in the first place. I am no exception, and since it hasn't happened to me yet i don't know what i can do to change it. Is there really such a thing as looking at the world through too many lenses?

HW 23 - Illness & Dying Book, Part 2

Tracy Kidder, Mountains Beyond Mountains, Random House, 2003

Precis: Farmer entered Harvard Medical School in the fall of 1984, he was only 24. He signed up for classes, got his textbooks and headed back to Haiti. He never had trouble passing his classes, in fact, he had some of the highest grades in his class. His professors understood what he was doing, and in fact, most of them embraced it. He was seeing diseases and situations everyday that most of the students there would never see in a lifetime. While he wasn't studying in class, he was studying with his friend and lover Ophelia Dahl. Daughter of famous writer Roald Dahl. Farmer wrote thousands of index cards on which he would write questions and then hints towards the answers. A good portion of his knowledge also came from experiences in the field including drug resistant TB. He would come back for midterms and finals, but Paul Farmer is a exception to the fact that you need school to learn.

Quotes:

1. "In the car, she started in on him, accusing him of self-righteousness. She didn't let up. Finally, he slammed on the brakes, reached across her, and pushed open her door. Get out! he yelled, and called her a foul name. She didn't obey. She sat rigidly in her seat, feeling both offended and also exultant, smiling inwardly, thinking, "Yes! I got to you. You have this human quality. You're flawed." (p.97)
2. "But he went, right back into the thick of the trouble, demonstrators climbing over the car while soldiers clubbed them. He took several more bloodied civilians in, and came back unbloodied himself. "It was very important for Paul to witness things," Ophelia would say. (p.98)
3. The establishment of a school may seem a bit out of place given the homelessness, landlessness, and hunger of many of the water refugees. But it appears that they themselves did not feel that way. Children flocked to the new facility. One peasant woman explained, "A lot of us wondered what would have happened if we had known how to write." (p.91).

Paul Farmer hates dealing with death. The diseases he deals with have claimed a good number of his close friends, including Father Jack. To him death isn't something that should be an everyday worry. He became a doctor so he could bring some kind of medical care to one of the most impoverished nations in the world. He wanted to help people. He went to the root of the problem. He knew that the root of the health problems came from malnutrition, bad water and just bad overall living conditions. He did more then throw drugs at the problem. He rebuilt schools, gave people new roofs, and cement floors, fresh water that they didn't have to walk down a 900ft steep hill to get. He organized funds from friends from school and other anonymous rich donors. It was more then just money. It was his life. What i realized that this book wasn't meant to make Farmer famous. It was for people to understand what it takes to take a country from far below poverty and starvation, and put them back to 3rd world country status. This book was meant to inspire us and show us that we all have the ability to be extraordinary people. It is all just about what you decide to do with your life. You can choose to keep it to yourself and share it with your few friends. Or you can dedicate it to those around you and really realize what can be done to make some one else's life better.

HW 22 - Illness & Dying Book Part 1

Tracy Kidder, Mountains Beyond Mountains, Random House, 2003

Precis: Paul Farmer, also referred to as Dokte Paul. Was born with a gift, he possesses the gift of healing. Instead of using this gift for his own personal gain, he lives in Haiti, one of the poorest countries in the world for 8 months out of the year, where he runs a hospital. Specializing in Infections Diseases, he is working with as many people as he can to slowly restore the health of the population of Haiti. Since he came there, no one has died of Tuberculosis in 12 years in his hospitals catchment area. His hospital is run off of donations, although he does charge a fee of 8 cents to all of the patients, unless they are wounded, sick, elderly, women or children. All else have to pay though. If his patients do not come for a check up, he will go out and find then, which sometimes include climbing mountains. He said to me once that he keeps working because there is always some one who needs treatment but isn't getting it. I guess that just shows what kind of man he really is.

Quotes:

1. "No one else, not at this time, is treating impoverished Haitians with the new antiretroviral drugs. Indeed, almost no one in any poor country is treating poor people who have the disease." (p.24)
2. "Look at you bourgeois people watching TV! Farmer says. The patients laugh. One of the young men looks up at him. No, Dokte Paul, not bourgeois. If we were bourgeois, we would have an antenna." (p.31)
3. Joe seemed glad to see him, as well as the present. As Farmer was leaving the shelter, he heard Joe say to another resident, just loudly enough to make Farmer wonder if Joe meant for him to overhear, "That guy's a fuckin saint." (p.16)
4. "My local hospital in Massachusetts was treating about 175,00 patients a year and had an annual operating budget of a$60 million. In 1999 Zanmi Lasante had treated roughly the same number of people, at the medical complex and out in the communities, and spent about $1.5 million, half of that in the form of donated drugs." (p.22).

In contrast to the "American way of life," Haitians live pretty poorly. They beg for food and live on what they can in a day to day manner. There was a part of this book where a woman came into the hospital with gangrene infecting her hand because it had been 15 days since she got the initial infection. In America we don't have to worry about that, we go to the doctor when we have pain in our knees or we take an aspirin if we have a headache, they have to tough it out. There will always be the people who truly upset by these inequalities, but how many of them are qualified enough to actually do anything, almost anyone can throw money at a problem, that is the american way, but it takes a truly remarkable man to actually make a difference. If there were a million more people who were just as qualified and dedicated as Dr. Paul Farmer, then there would be a whole lot less problems in the world. But there aren't so the men who are like him look that much more remarkable because of all the things they are willing to sacrifice to try to improve the world around them. Reading about what he does makes me want to change the world, but where do we start? Where is the line between wanting to help so we donate money, and actually donating ourselves to a cause that we really believe in? Or is that the problem, we really just couldn't be bothered enough to actually have something we believe in.

HW 21 - Comments

Amber,
I think you had some ideas here that were worth restating. to me the most powerful one was "We don't want to believe the bleak, depressing reality of just laying 6 feet under when we die." I think that because she never directly mentioned her fear of death for this reason, it was even more important, because this really is an idea that people don't ever really want to think about.
There was depth in your ideas and a lot of personal connections that made it seem like a topic that you really did care about and because of that it was reflected in your work
good job
-sam

Amhara,
I really liked the direction you went in the last paragraph because it really showed this beauty of death that really makes you appreciate what you have, because you know you wont have it for that much longer. My favorite line is "This is true at least for the people lucky enough to have loved ones and passions." Because it is filled with doubt and regardless of how many people you may have around you, it is something that everyone thinks. There is always the "what didn't i do." You did a good job of putting your thoughts together on something you didn't get to see, but i think you picked up the ideas beautifully.
-Sam

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Amhara said...

I thought you're outlook on death is very interesting. You've accepted death yet you'd rather not think or talk about it and let nature take its course. This seems to be the outlook of most people but I find it interesting people think of it as an avoidable topic. I think that you could have expanded on that idea because it is a common is an idea shared by many other people. One thing you could discuss thinking and talking about death personally affects you and why it makes you uncomfortable. I personally believe that over thinking about the topic is what causes all of the negative connotations that go along with it. We instinctively think about how we are supposed to feel because death is always a big deal, but if we gave death less significance, such as something that just occurs naturally, we probably would feel as uncomfortable about it.

amberrosesmith said...

Sam, i thought it was interesting how you don't feel the need to talk about death. Why is this? Do you feel its something thats uneeded or do you think you don't want to face the reality of it?
I think its a great attitude to not be afraid of death, and love the way you made the paragraph personal by making connections to your own family. I have the same view as you as in I never want to become a burden on someone and have someone resent looking after me. Reading 'Tuesdays with Morrie' I thought to myself I think I'd rather die than suffer for a drawn out period of time.
I think the way you make real life connections and the language you use is really nice, well done.

Amber :)

Sam j said...

Eli (younger brother (less skilled)):
Your ability to take a serious and personal concept, such as the path that is death and how this individual dealt with it, and bring it into a personal and certainly relatable topic is outstanding. I have some bias being part of your family, but it is clear that your connections are profound. For example, you mentioned "Like what my mom said with how she isn't afraid of death, just the effect it will have on people when she does die. I can relate to that because i have too much that I cant leave behind and i don't want other people to be responsible for me when i do die." You turn a very small and narrow story into not into something from your life, but something that is relatable to everyone.

In my opinion the goal of a writer is to tell a story that will bring a reaction of others. Just to hit them and make them think, make them say, "this applies to me". You took a story and did just that, with strong and creative connections.

Sam j said...

Stephanie (mom/mentor):
"why do we suddenly feel the need to really live, when we find out we are dying"
This was an amazing comment and insight to me. It takes a tremendous amount of bravery to face mortality and still be true to the course of our lives. This says to me that you know that you have to be able to clearly see the life you live now, to make the most of it in your final final days.
it wasn't easy to se your grandmother (whom i know you loved, and know you are so loved by) live and die with great dignity and i am proud that you are able to build on this important life lesson. To understand the value of family and loved ones now, to cherish our days while we can live them as we choose is a great gift and i am so impressed that you have been able recognize this.

HW 21 - Expert #1

Important Insights/Experiences

1. The way he would take Josh to museums and paint and do art with them. So they wouldn't grow up in front of the TV
2. The way they never used the word Death, or Dying
3. The way he deteriorated from "movie star handsome" to "flesh and bones." In the end he was 6 feet tall and weighted 92 pounds.
4. The idea of pushing things away, not being able to talk, but pushing everything away
5. The way Evan would hold his head up so he could sit up straight, or how josh stayed home from prom to take care of him. And how Beth would stay up all night with him, and take care of him like a baby.

One of my favorite insights was the way she discussed how they never used the words death or dying. They both knew what was going on, but they didn't need to talk about it, they just knew. When my grandma was dying, she never said she was, but she knew she wouldn't be coming to fire island after last summer because she knew she wouldn't last, but she just wanted to enjoy her time left and be with the people who love her. Which is what i believe in, not being afraid to die, but not talking about it. Just let nature take it course.

My other favorite insight was how this slow death caused him to need to have to take care of him. He didn't want to have people doing things for him, he still had his dignity, so he didn't like it. But eventually he accepted it. I don't ever want to be old enough, or in a position where i need people to wait on me hand and foot. Where my loved ones have to watch me slowly die. Like what my mom said with how she isn't afraid of death, just the effect it will have on people when she does die. I can relate to that because i have too much that i cant leave behind and i don't want other people to be responsible for me when i do die.

What this story brought to mind is what it is like to literally be living just to avoid death. We always scramble if we find out we are going to die because suddenly there is so much to accomplish. We know that everything is going to end, so we want to do all the other things because we were living our lives. We couldn't go to Paris because we were working, but now we have 9 months to live so i am going to go learn french and visit the Eiffel Tower. What i thought about was, why do we suddenly feel the need to really live, when we find out we are dying. That is what i respected about this story. This man only changed the way he lived because he couldn't physically do the things he used to. He continued to live as he had because he was living the life he enjoyed. He only spent more time with his wife because they both knew they were going to have to make up for lost time. Although it isn't directly related, i learned that if you can continue living the way you are living when you find out you are going to die. Then you are living a good life. But what i learned is to love who you are with and what you do so that you don't have to look back when you are dying and question why you weren't living the life you dreamed you were.

HW 19 - Family Perspectives on Illness & Dying

My grandma was sick for a very long time. She had cancer, and then it went into remission, and then it came back. When i asked my mom if she ever talked to her own mom about death, she said she had. She said that my grandma knew that her time was running out, but she wasn't scared of death, "she was scared for us, for what we would have to go through," as she put it. For people who have never met my grandmother, she was a strong willed and independent woman, she was ahead of her time. Someone people would look up to, she just had that aura about her. She really was a strong woman, you never would have known that she had cancer until the end. My mom on the other hand, knew the whole time because that was her mother. I asked her how she felt about the whole deal, and she said that after watching what she had gone through, she wasn't afraid of death, just suffering. She didn't want people to watch her slowly deteriorate until she did die. I don't think anyone does.

The first thing my mom said to me after i read her the assignment was that she always knew that my grandma wanted to be cremated even though it was against her religion. I felt that this was a significant thing to begin with because my mom was always very close with her mother and it is deep to understand that your own mother will die one day and you are going to have to be responsible for fulfilling her final wishes. She knew that once my grandma had accepted death, she couldn't do anything but be there for her to support her. It reminded my mom of the one time she went to visit her grandmother Sadie's grave, she said she went into the graveyard and it was so quiet and peaceful. "It was fasinating, so many souls resting in peace, but under the ground, rotting in boxes," as she said.

After watching what happened to my grandma, my mom has a new outlook on life, and death. She said that you are supposed to appreciate life, and with it, appreciate death. The only sure thing in life, is death. Life is very much like the Never Ending Song, one day you start it, and how long you keep it going it up to you, but eventually you get tired of it, so you stop, and then you move on. Its fun to do with groups of people, it is merry and makes you feel like you are part of a family when you sing it. Very much like my grandma's views, my mom agrees that she isn't scared of death, she is afraid of what she will leave behind, that somehow her work here wont be done. To me that made sense, not wanting to leave anything behind, we are given plenty of time on this earth, but yet it never seems to be enough. We always need more, i guess because no matter how we have accepted it, we are still a little scared. Thats what my mom is trying to say, or thats how i interpret it.

I'll leave you with a little poem i found on the internet:

When the first living thing existed,

i was there waiting.

When the last living thing dies,

my job will be finished.

i'll put the chairs on the tables,

turn out the lights,

and lock the universe

behind me as i leave.

-Death