Jake DeMartini
Bob Ettinger
The Suffering of Illness
The severity of certain illness ranges and as Sontag points out, the traits of these diseases can bring on new difficult roles that many are forced to play. The two primary diseases that Sontag focuses on throughout her book are cancer and AIDS/HIV. With a reputation of being terrible, Sontag points out that this certain reputation adds onto the suffering of those who have it (Sontag, pg. 100). Thinking about it more on a personal level, when learning that someone has AIDS or cancer, it is truly hard not to focus on that quality. Terrible to say but in most cases its true. Although we might get to know them and like them, the fact that they do have incurable illness will forever be stained in the back of your mind. This is something that those who are infected will have to live with. Some people are just simply unaware and skeptical of the disease and in most cases; confusion with the unknown can cause fear.
Along with the struggle of living with an illness comes metaphors that clearly degrades the illness by falsely using them for quotes and political/military gain. This only adds strength to the disease. Shaftesbury makes a point that it is ok and rational to have a little irrationality or superstition. “Stern repressive measures are likely to aggravate disorder rather than cure it, turning a nuisance into a disaster,” Shaftesbury points out in Sontag 79. Hobbs plays off of this by using reason to understand that society is basically healthy with some diseased which society thinks is “always manageable.” These are all metaphors that Susan Sontag touches base on.
After reading about the difficulties and the struggles that cancer and AIDS/HIV patients go through, can you think of an example of someone who has lived with an illness and has fought with the baggage it comes with? Have they influenced you in anyway? Have they changed your perception about illness? And lastly, have you ever seen or heard about illness discrimination in your lifetime or in the lives of others around you?
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From the time that I was 9 until I was 13, my grandfather was ill. He had a heart attack, and was afterward weakened but still himself. When I was 10, he was diagnosed with polycystic kidney disease. I had many encounters with his disease, but I remember most clearly two memories. The first was a family vacation to Jamaica. He was on dialysis three times a week and in order to go anywhere, he had to take his medicine and everything he needed for his dialysis with him. Each of his three kids family’s had to bring two boxes of fluid with them on the airplane because he could not take it all himself. It was a really fun trip, but I remember how hard it was for him to make it and what a sacrifice it was to be gone from his care center for so long.
The second encounter I remember so clearly from his illness was a visit to his home for a family reunion. We would normally visit once or twice a year there and meet up somewhere else a few more times, but this was a special visit, and not during a time that we would normally go. The whole family was gathered there, in North Carolina, to basically say goodbye. I remember very clearly when we were getting ready to go to the airport after lunch with the whole family. We were getting in the car and my sister was crying, my mom told me to say goodbye to my grandfather because this would probably be the last time that I would see him. I said goodbye and he told me he was proud of me, what exactly he said I cannot remember but I remember realizing that I actually would not see this great man again. Luckily we did see him one more time, but he died shortly before thanksgiving when I was 13. We went to his home for thanksgiving so we could all be together for the funeral and see our grandmother. This was the first close experience I had with death.
My grandfather was a very strong man, always working outside and playing with his grandkids. The biggest difference I remember from his illness was how weak he was. I was afraid to touch him because I thought he could break. Because of this experience and the strength he still had in his words, I realized that why the ill may be fragile they can still withstand a great deal. My grandfather was very sick for 4 years, but he could still travel, play, and give the best advice. An ill person is still a person, he may be sick and weaker, but he is still himself and as thoughtful as ever. If I learned anything from him and his illness I learned that he only wanted to be seen as a person, seen as my grandfather who would just be leaving a little sooner than expected.
A few years ago my skater friend, Rudy Galindo was diagnosed with HIV/AIDS. I remember hearing the news through the skating pipeline. I didn’t know how to react when I first saw him. I know that he has struggled with a lot of stereotypes in figure skating. He is the first male skater to openly speak his sexuality. He is not shy about wearing colorful skating outfits, wearing sequence, or putting on a little make-up. His brother and two coaches died of AIDS. When he came down with pneumonia he knew something was really wrong. He was reluctant to go to the doctors because of fear of the possibility of him having AIDS. However, eventually he went to the hospital and it was there that his worst fear came true. Although, it sounds like his world came crashing down, he was able to get antiretroviral treatment and slowly make his way back to a normal life. Rudy has not only succeeded as a skater, but has succeeded in the battles that he faces everyday with being HIV. He has always been able to touch people all over the world through his artistry on the ice. But now he is also able to touch people all over the world by educating them about living with HIV. He vowed to become more active in AIDS related causes and organizations. Rudy began leading and speaking at the San Francisco International Aids Candlelight. He later became the Honorary Co-Chairman of the National Minority AIDS Council and spokesperson for NMAC’s 2000 Summer Campaign against HIV-related anemia.
My first exposure to cancer was in kindergarten, when my grandmother was diagnosed with it and died shortly after. I still remember the day my dad picked me up early from school. He told me that my grandma was very sick and that we would be going to Iowa to see her and say goodbye. I was six years old, and I viewed cancer as something terrible and scary. It took my grandmother away from me.
Looking back, I recognize my limited understanding of the disease at this time. “Cancer” was, essentially, a death sentence. I didn’t know any better. Realistically, this is to be expected from a child. Too often, however, these connotations of the disease remain throughout one’s life. It is these associations and metaphors that often prove to be extremely dangerous, perhaps even more than the disease itself.
A couple years ago, my friend Collin was diagnosed with lymphoma. He was sixteen at the time, a varsity athlete and active community member who always had a smile on his face. Needless to say, it came as a shock when he woke up one morning with a tennis ball sized lump on his throat, a lump soon diagnosed as cancer. This diagnosis was terrifying, yet it was far from a death sentence. The response from friends and family was incredible. These people did not view Collin any differently, but poured out their love and support. When he started to lose his hair, four of Collin’s closest friends shaved their heads as well. Four boys with clean-shaven heads stood before their friend, a visual representation of the fact that they were there for him no matter what.
Today, Collin is fully recovered and back on the basketball court with a full head of wavy hair. Fortunately, Collin’s cancer did not take his life. Quite to the contrary, in fact, the cancer enriched his appreciation of living. A disease is a disease, nothing more and nothing less. Furthermore, those who fall victim to a disease are still people and must be regarded as such, for our own sake as well as for theirs.
Susan Sontag mentions that some illness are naturally prone to stir up hostile feelings towards the host. Cancer, for example, was relatively unfamiliar and mysterious when Sontag wrote Illness as Metaphor. A lot of times, the victim himself was blamed. “He must have a faulty character,” some would think. Other illness had a known cause so they didn’t necessarily evoke the same shameful feelings. This is quite a sad concept that some illnesses may possibly be genetic, or attained by accident, but the victim is still blamed. Even today not all causes of illness are known. Despite illness discrimination, I still want to hold on to the belief that although many illness seem destined to inflicted their victims, others may be helped or cured if we life with a healthy, balanced life style.
My dad is the one person’s whose illness has affected my life the most. He was diagnosed with border-line diabetes as well as high cholesterol, when I was in my early teens. As a child, I never really thought about the about of sugar I ate, or the amount of highly saturated foods consumed. Kids usually don’t know to look for harmful ingredients. When my dad began to watch is sugar levels and reduced bad fat intake, I was influenced. Although it isn’t full blown diabetes, my dad still struggles with his illness. Sometimes his blood sugar levels drop below normal and he gets extremely tired and hungry. Other times, he may eat too many carbohydrates in one day and his levels are too high. Then he needs to exercise and expel energy to help normalize his blood sugar. Although it isn’t necessarily in my control, my dad has influenced me to watch what foods I put into my body. Are they doing more harm than good?
My perception of illness hasn’t drastically changed. I never experienced illness discrimination while growing up, or even now. I see illness as a part of life. Many times, the victim already feels lousy due to the illness and society makes it worse by trying to shun him. I also don’t think one illness is more shameful than another. I think all too often society confuses an illness for a person’s character. One’s character may change because of an illness, but I do not think that an illness should define a person .
When I was around 15 my grandpa was diagnosed with Alzheimer’s. It started very mild and I couldn’t tell the difference in his attitude or personality. Though, gradually it got worse and worse. The first time I really remember him making was mistake was when I brought one of my friends to our family beach cabin. My grandpa looked at her and very casually “Hi darling” and gave her a kiss. He had never seen my friend before, but he just though she was one of the grandchildren. It shocked me that he no longer knew exactly who we were anymore and he couldn’t name us. He always pretended like everything was ok though. After then his Alzheimer’s and his quality of life was a downhill slide. He couldn’t remember my mom or his own son. At the beginning of this past summer the family decided to put him into an Alzheimer’s home nearby. His disease was too difficult for my grandma to deal with on her own and consequently her health was deteriating also. I remember visiting the home only once because it was too hard for me to deal with this new situation and it was too hard for me to see him living like he was. By the end of the summer, the whole family was in the hospital saying goodbye to our loved one and it was over.
My grandfather influenced me in many ways. He fought for his live every day until his body physically couldn’t manage itself anymore. He lived his life to its fullest everyday even in the beginning stages of this irreversible disease. He never gave up for his children and grandchildren. This definitely changed my perception on the disease. I saw him fight it from the begging to the end. I hope if someday I come down with an illness that I fight it in the way that he did. During his struggles, I never witnessed illness discrimination, but Alzheimer’s isn’t a disease in which discrimination is common.
Although I have never personally known someone with HIV/AIDS, cancer has touched my life in many ways at many times. I have had many family members that have struggled with the disease. Both my aunt and my grandmother survived breast cancer and both my grandfathers died from cancer. I found out at an early age what cancer was and more importantly the devastating effects it could have on those I loved. The story that seems to be on the tip of my tongue after reading the blog though, is about someone not in my family. That is my friend that has had leukemia. He is just two years older than me and I have been amazed many times at his courage and fight. His first diagnosis was when he was twelve. I am from a small town and it was devastating for all of us. He knew better than to be sad though. He went through the typical treatments, losing his hair along the way. Pretty much our entire town was tested to see if there was a bone marrow match, and luckily one was found. He steadily improved and eventually went into remission. It was so awesome to see him back and healthy. Unfortunately, a few years later at one of the necessary check-ups more cancer was found. Once again, he fought for his life and won. His bald head soon grew into thick proud hair. This kid has the best spirit and personality of anyone I have ever met. Maybe some people would tie his spirit to him having to continually fight for his life, but I don’t think that’s it. He had his personality before the cancer and he will have it long after. He is not his cancer, and he is a testament to the truth of the disease not being forever tied to the person. He is just another college kid, just like us and I never look at him and think cancer. He’s just Garrison. Unless the topic is brought up, no one that knows him even remembers the hospital stays, the walks to raise money for medical expenses or the pain that he went through. This is a good thing, and something Susan Sontag I think would like. However, when I began writing this, I almost immediately began to use military metaphors without even thinking. Sontag probably wouldn’t have liked that, but I found it impossible not to say that a person is fighting cancer, or had won or lost. I’m still not sure if I think this is such a horrible thing. I am sure that despite Garrison’s courageousness, cancer still scares me. It is still much a mystery and still claims many people’s lives. Hopefully one day soon this will all change.
I have actually experienced first-hand some of the baggage that comes with living with an illness because I have Type 1 diabetes. I have to deal with it everyday for the rest of my life and if I neglect to take care of myself, it definitively has the potential to turn into a terminal illness.
Most of what I deal with stems from the lack of information in our society. Not many people know that there are two types of diabetes, type 1 and type 2, I didn’t even know until I was diagnosed. There huge epidemic of type 2 resulting from the obesity crisis in this country and therefore people have automatic assumptions about me and my diet when I mention that I have diabetes. However, type 1 has nothing to do with weight or diet, it just develops in some children and doctors don’t know what the cause is. From that misunderstanding is where the misconceptions stem from. I can’t think of any common metaphors but I often experience over exaggerations about it. But often people believe that whenever I am having a problem with my blood sugar or insulin that I will “die” as a result, which is not true. It takes a long period of time not taking myself to actually cause death. Also, depending on what my blood sugar reading is, people will ask me if it is good or bad. It is never good or bad, it is unhealthy to have a high or low blood sugar, but the word “bad” gives a negative connotation that isn’t necessary.
There are definitely times that I want to conceal the fact that I have diabetes from people because it’s hard to explain sometimes. My peers also treat me differently when I eat sweets or things that they believe diabetics can’t eat. I have to explain that because type 1 is different from type 2, I can eat whatever I want I just have to give myself insulin when I do.
However, I haven’t seen any illness discrimination outright, but I have noticed people discriminating against those that have HIV/AIDS. They seem to make judgments about the person even though they don’t know them. They judge their lifestyle or look down upon them for that simple reason that they have an illness. Therefore, I agree that illness should not define the person.
I believe that Magic Johnson is one of the few celebrities who has public ally dealt with HIV/AIDS and successfully countered the stigma associated with the disease. In 1991, Magic Johnson decided to immediately retire from the NBA when he discovered that he was HIV positive. And since then, while he pursued his basketball career on and on, he became focused on forming public awareness campaigns for the disease. Fortunately, Magic has maintained his health throughout the years due to a mix of common HIV/AIDS medications known as a "cocktail". However, his solid appearance has mislead some people into thinking that AIDS has a cure. It is this, and other misconceptions about the disease, that has motivated Magic to start the Magic Johnson Foundation. While the virus does afflict people physically, Magic Johnson proves that it doesn't have to do so mentally. Living with HIV/AIDS does not have to be "disgracing, disempowering, [or] disgusting" (113) as Sontag, relates. People can treat their disease, and continue to live with dignity. Though Magic’s life hasn’t influenced me personally, I knoow that he has given hope to thousands of people, by showing them that a diagnosis is not a death sentence.
Well, in regard to the question of whether or not we knew someone that was diagnosed with a life-ending disease, I have. In fact it was two of my grandparents. My grandpa from my mother’s side died of lung, organ, and brain cancer. While my grandma from my dad’s side of the family also died of cancer. I’m not sure what cancer specifically it was; I was pretty young at the time. In some ways it did change my perspective on the diseases. Seeing both my grandparents in the last stages on the cancer was very grim. They were nothing like I remembered them. My grandma’s feet were swelling the size of her thigh, no joke. My grandpa had been a habitual smoker since the age of 16. Seeing him just completely helpless and coughing up pieces of tar from his longs definitely left an impact on me. Hell, it would to anyone. Seeing these things when I was a child left the impressions of how serious these diseases are. When I hear that someone has cancer I become very sympathetic, it must be hard to go through. I mean it was hard for everyone to watch. It leaves an impression on you.
Seeing my grandpa go through this, transformation of sorts, because of smoking has never left my mind. It must not be that strong of an impression because of the amount I smoke now. I’m not like an addict, maybe like one or two a day, but still far more than I ever thought when I was a kid. I got to work on that.
When you are infected with a disease and told that you only have six months to live, but in fact you battle death for three years, by medical terms it is sufficient to say that you are a miracle. Although I never really had the opportunity to develop a relationship with my step-grandmother, I was able to watch her during her battle with lung cancer. Despite the multiple chemotherapy treatments, hospital visits, and long painful days, I am able to say that she is undoubtedly one of the strongest people that I have ever known. When you mention metaphors in respect to diseases it is imperative that you consider the context. Sure some metaphors for cancer are “pain”, “suffering”, “socially withdrawn”, but have you ever considered the positive metaphors. “Life”, “strength”, “joy”, just to name a few. It seems to me that individuals with life taking diseases enjoy their time on Earth more so than healthy individuals. This is one of the most powerful things that we can learn from the metaphors and stigmas that surround cancer and HIV/AIDS. Infected people see their families more often, don’t take anything for granted, think positively, and live for themselves, knowing that any moment may be their last. Why can’t we act this way? How much of a better world would this be?
Watching my step-grandmother suffer and consequently my stepmother and her whole family ahs taught me a lot about life and what it means to truly live. While fighting lung cancer my step-grandmother lived her life to the fullest. She hard her difficult times, but it was during this periods of crisis that our entire family would come together, like families should. It is times like these that illustrate how illnesses aren’t really that bad. Could it be that their severity is partially a result of human degradation?
I have not been personally affected by illness. Sickness, along with death, have been underlying ideas, lurking outside of my life, not willing to announce its presence directly to me. I have been lucky.
In my fortunate situation, it is easy to get caught into the train of mind of being ignorant. Ignorance is bliss, so why should I have to look outside of my bubble into the world around me? Why should I concern myself with the woes of others? This society has trained us to be innately selfish.
But there is still hope. Service learning provides an opportunity for people to pop their bubbles and broaden the perceptions within their minds. It is an attempt to demonstrate the innate goodness of this human race, a way for individuals to show that they do care for one another, and for the greater whole that they are part of. It is a way for people like me to be exposed to new things, new predicaments, that provides greater understanding of the world that we live in.
This situation of blissful ignorance also provides a greater need for enlightening forms of entertainment, like Rent. Without such edgy or controversial forms of literature, most of the public would continue to live their lives considering illness to be non-issues. Without illness hitting close to home, how are people expected to know about it?
During his undergraduate years at Duke University, my father took a course in Anthropology, in which he conducted a research paper about a medicine man. He interviewed a medicine man that he knew of through an acquaintance, that went by the name of "Hawk". Hawk was a Native American and largely valued his heritage and culture. Within his tribe, a boy was thought to "become a man" only after he was to spend 3 days in the wilderness with nothing but water. My father ended up growing very close to Hawk; they quickly became friends. As a respect to Hawk and his culture, my father insisted that he participate in the ritual of spending the 3 days in the wilderness.
From that time on, Hawk and my father remained close friends. When my dad married my mother and started a family, Hawk was constantly at the house for dinner, and to spend time with my brother and I when we were kids. When I was about twelve years old, my parents informed me that Hawk had been diagnosed with cancer, and that it may have been caught too late to save him.
A few weeks later, my mother threw Hawk a surprise birthday party, which Hawk of course attended. This was the first time I had to deal with such an event. I had never been introduced to this kind of situation before, and being quite young, I did not know how to handle it. I remember trying to "pretend" I didn't know Hawk was sick. A few months later, Hawk performed a small concert (he played the flute) with a little band. I remember being bored with the performance, and I wanted to get up and walk around. Part of me felt "guilty" for not paying the "sick person" respect. I naively got up in the middle of the performance. When Hawk finished, he came over to talk to me. He sensed I felt bad for leaving in the middle of the performance and took me aside to have a talk. I will never forget the words he spoke. He told me that I did not have to feel bad- he was not offended. He did not mention his sickness, but I was very aware that he was referring to it, regarding my guilt.
This largely changed my perception about illness. I used to consider Cancer and AIDS as horrible, life-ruining events. Hawk showed me not that diseases are good, but that one has to deal with what they are given. He didn't think that he should be treated any better--He simply dealt with what he needed to in his own way.
My first experience with cancer was at the tender age of six or seven. My mother informed me that my grandfather had been diagnosed with prostate cancer. Being a disease of the genitalia, it was a constant unspoken acknowledgment when I was around him that he was ill. It was not spoken about or analyzed. In fact, the only time the disease was referenced to at all was when my grandmother would update the family on the status of the disease. It was never my grandfather's condition, it was always the condition of the disease and how it was affecting him. It was strange watching my family deal with such a daunting disease, but coping with the disease was not the only strange aspect of the situation. After my grandfather was clear of cancer, it wasn't spoken of again. It wasn't mentioned or used as a tale of survival, but then again what is surviving cancer compared with surviving the atrocities of WWII.
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