Facing Terminal Illness
As a child we deem ourselves invincible, nothing can defeat us. As time goes on we scrap our knee or attract a cough, our invincibility faltering. But as always, we get better and convince ourselves that our bodies can always heal us. When the time comes that a terminal illness engulfs us, it is a hard thing to come to terms with. We may deny it, believing that if we do not acknowledge its existence, it will never fully blossom. But the disease sits there and slowly eats away at us until there is no denying it, we are not invincible.
When Beth, our guest speaker, came in, she spoke of her husband who had died of cancer. Two years before his diagnosis he began to look weak and tired. People would pull her aside and ask her if he was alright, for his appearance worried them. Her husband Erik refused to go to a doctor. He believed that he was fine, that he could overcome whatever he was battling. Over the two-year period he lost muscle mass, and weight, coughing all the time. It became so treacherous that he could no longer sleep lying down but instead had to sleep bent over a table. At last he found that he could no longer deny it, he was ill. Illness is a hard thing to accept. We want to believe that we’ll get better or that our mind is only playing tricks on us. But maybe it is better to not face the illness, because when we do the world of machine life and medicine can take over, possibly leaving us in an even worse state.
Isolation
It is clear to us than when we are severely ill, we go to the hospital. There is no question about it, going to the hospital is a customary thing. Indeed it continues: as we become elderly it only seems right to move into a nursing home, letting the healthy care for us. But why must it be so? These institutions build walls, both figuratively and literally, around us, holding us in. The sick are isolated, no longer part of a functioning society, only part of their very own. When we see or realize the disability of another person, we stigmatize them. We isolate ourselves too in our very own society, from those who do not fit our requirements for displacement. In Stigma and Social Identity by Erving Goffman, he speaks of the social isolation that we create. When we meet with someone we have internalized assumptions of which we are not necessarily aware. If the person does not meet this assumption we immediately stigmatized them, in other words we find them inferior. While some are unaware of their negative attribute, others are. They usually feel shame and embarrassment towards their attribute, deeming themselves abnormal. It is important to realize however, that these attributes are not negative in every situation; it all depends on the “normal” point of view. One person states, “I took a hand glass and went to a long mirror to look at myself, and I went alone. I didn’t want anyone...to know how I felt when I saw myself for the first time,” (p. 7). The isolated feel self hate, wishing that they would not too accept their own difference. If we did not isolate the ill and dying, then perhaps we would no longer feel shame upon realizing that we identify more with the abnormal than normal.
Paying for Medical Care
Insurance by itself has developed tremendously over the years, initially used by the Babylonian merchants to insure their product. By the time it reached America the Europeans had already begun the idea of insuring the disabled. While America insured their homes against fire, medical insurance was a ways off. Americans paid for their health services through fee for service. But as hospitals advanced with more sanitary techniques and specialized education for doctors, everything became more expensive. Hospitals had many patients for whom they care, who could not actually pay the bill for the service received. Determined to fight bankruptcy, a Texan doctor approached the teachers of Dallas. He promised 20 days of free care for each of them if they all paid 50 cents every month to the hospital. This allowed enough money to flow into the hospital and provided care for the few teachers that actually needed it. Following this model, private insurers began to focus on large workforces to provide both money and limited care.
Moving forward into the 2000’s, health care is under reform. The profit incentive private insurers of before have succeeded in denying millions of Americans health insurance and preventing thousands more of insured Americans from obtaining sufficient care, proven by Michael Moore’s Sicko. President Obama’s health care reform aims to provide more valid care for Americans. At the moment 45 million plus lack health insurance, while Obama’s idea plans to provide it for 32 million more through the Patient Protection and Affordable Care Act. Anyone who wants health care will be provided with it, no matter his or her physical state of being. Medicaid will be opened up more freely to the poor, offering care to those who were before denied. Insurance exchanges will be implemented to aid people in finding affordable health insurance. These exchanges will be run by nonprofit organizations in every state and have certain standards which the state must meet. Although a complicated plan, we can only hope that it attempts to provide a solution for the mess of a health care system we currently have.
Staff of Washington Post, Landmark, Public Affairs; New York 2010
The Process of Dying
Death itself is a puzzling thing – something that we cannot know much about. Dying however is a completely different story, as we have the conscious state of dying still among us, their suffering visible. While one can always choose to die in the hospital, Beth Bernett chose home hospice care. She took care of her husband, giving him medicine when the pain was too much to handle, fetching him water when it seemed to be the only thing he desired. She said it was hard, but that those were the best days of their marriage. It was different, seeing him with his skin stretched across his face, the bones of skeleton prominent. Dying is clearly something of suffering, but also a time of reflection. She explained how at 4 or 5 in the morning she noticed the indescribable stillness come over the room. The crying came later, but at that moment nothing could break her. She stated that she would never do it any other way, for she felt that this was what was right for her family.
Sharon R. Kaufman however in And a Time to Die: How American Hospitals Shape the End of Life demonstrates the process of dying in a hospital ward. She believes that the culture of the hospital shapes the way a person dies. While Erik, Beth’s husband had a peaceful death in a home that he knew well, those in hospitals tend to die a more painful death. Death is not something accepted in a hospital; the human body is worked on, poked and prodded until it no longer responds in any way to the treatment applied. It is only then when death is accepted, as there is no way to draw out the suffering any longer. Kaufman states, “Approximately one-quarter of all hospitalized patients are treated in intensive care or cardiac care units before they die,” (p. 25). The human body is no longer human in the dying process of a hospital, instead a machine that needs tinkering with, even when there is no hope. The communication between doctor and patient falters, leaving a sense of loneliness and lack of control. Accepting death is a hard thing on its own, but the environment of one’s process of dying seems to define the death of the person even more greatly, determining their ultimate suffering.
Being Sick
Every single person has been sick once in his or her life, whether it was a defining moment or not. But it does leave a sense of vulnerability, a what if. After interviewing my parents they both said that when sick they find a place to be apart and to rest. The habits of the sick are truly defined by our institutions. If we did not have hospitals and nursing homes for the sick to be, would we find it just as much necessary to find a place to isolate ourselves even with the common head cold? Of course we do not want to infect others and rest proves to be the best antidote, but why must be separate ourselves from those whom we love? We as people need to reevaluate how we see the sick. Death has become such a prominent enemy that we have machines fight it off, even when the life being saved might no longer be worth living.
The idea of being sick, of missing school is of course always intriguing. But once the sickness overwhelms the body it is hard to find a reason for why this might be better than the alternative from which it releases you. When we are ill it seems to be a point of reflection, of realizing how great it is to be healthy. We deny our sicknesses, wishing that we too could be part of the fun, leaving behind the pity and embarrassment of being disabled. I went to the eye doctor the other day because I found I had been having trouble seeing things far away. I sat in the chair waiting for her to test my eyes and I realized that I was nervous. It puzzled me, the worst thing that could happen would be that I needed glasses. But for some reason I wished that I were not sitting in that chair, awaiting a diagnosis. It was apparent that I found glasses something different, a negative attribute as Goffman would see it. I never looked down at anyone with glasses, at points I envied them, wishing that I too could have a pair. But it was the realization that it was actually happening, that worried me so much. I remembered as kid trying on my parents glasses thinking wow, I never can get glasses, they don’t look good on me. Or sitting with my friends complaining about getting contacts, when I would smartly reply that I didn’t need them. To view the sick, to pity them, is very different than when you become one of them.
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