Art and Illness project

Purpose: To gain perspective into the life of a Type 1 diabetic.

Type 1 diabetes (T1DM) is a disease that often affects the most innocent: children. In fact, babies can even be diagnosed with this life-altering disease.

diabetes project 5

Source: http://sciencenordic.com/four-new-type-2-diabetes-risk-variants-identified

Images of babies being pricked by needles proves hard to stomach, and may stir up strong emotions. Why are we imposing harm on something so helpless? Parents of these babies/children may yearn for another way, a cure, hope. Yet, little do they realize that less than 100 years ago, diabetes resulted in death, often in less than a year. In today’s world, with the availability of insulin, diabetes can be managed. While it is heart-breaking to think of pricking a baby with a needle multiple times a day, parents realize is it a necessary aspect for the health of their child.

Once a child is diagnosed with T1DM, his/her life is changed. The child is in essence “branded” with the disease.

Image

Source: http://www.diabetesmine.com/2012/10/amazing-diabetes-advocates-michigan-family-dreams.html

The photo above shows a tattoo that is meaningful for a variety of reasons. The tattoo carries forth the idea of being branded by a disease. Similarly, T1 diabetics are often told to wear a medical alert ID that in case of emergency will let others know that they are a diabetic and the appropriate actions to take. While it may seem a drastic action by some, a tattoo such as the one above could be just as useful as a medical alert ID that many diabetics wear, and in such a way could be rationalized. Others may simply look at the tattoo as a desecration of the human body. In Body of Works by Christine Montross, chapters 5 and 6 beg the question is what we do to our bodies ethical, and where is the boundary line where the ethical becomes unethical. Some may look at the tattoo above as completely unethical to  ruin one’s body with a tattoo. Those with such a view often quote 1 Corinthians 6:19, which reads, “Do you not know that your bodies are temples of the Holy Spirit, who is in you, whom you have received from God? You are not your own;” However, when taking the whole situation into perspective, would the same person still feel the same? If, for instance the tattoo were to save the person’s life should he fall into a hypoglycemic coma and have no other immediate identification that he was diabetic, would the there be a different outlook on the tattoo? Judgement may change based on perspective.

Often when the word “diabetes” is thrown about, another word also comes to mind: sugar. It is common for people to associate diabetes with sugar intake; however, it is a myth that too much sugar causes diabetes. Especially in T1DM, the cause of the disease is widely unknown. Yet once the diagnosis has been given, aspects of diabetes interfere many times a day and prevent the normalcy of life.

Image

In essence, similarly to the picture above, a type one diabetic may feel trapped or imprisoned in the disease. The above picture shows a person trapped in their blood glucose meter. Blood glucose levels must be checked multiple times a day, insulin must be administered, food must be measured and weighed, carbohydrates must be calculated. It may be easy for a diabetic to lose the sense of self, and instead be defined simply by the disease. Chapter 2 of Disease and Representation by Sander Gilman brings up a similar point, that once being diagnosed with T1DM, it defines you, and separates you from the rest of the world.

“Sam’s Story”

Starting at 1:21.

Many aspects of “Sam’s Story” gives T1DM a different perspective. During the narrative, Sam says, “It almost seems like there is a constant need to  justify what you are doing, which makes it harder to become part of daily life”. What by necessity is a new-normal aspect of Sam’s life, he has to justify to others what he is doing, which in turn makes it difficult for him to make diabetes part of his new-normal. Chapter 4 of Picturing Health and Illness by Sander Gilman relates by saying that when we see something that is not normal we think negatively instead of positively. Also relating to “Sam’s Story” is the non-perceptual theory, that if someone hasn’t experienced diabetes, then they don’t know what its like. As Sam said in the video, his parents have concern for him, and look after him and care for him, but as he says, “it becomes a bit repetitive”. Also, Sam says that in his experience, society assumed the worst (ie. that he was eating sweets in class, or drinking too much alcohol), when in reality he was just experiencing symptoms of his diabetes.

Narrative is one way to bridge the health care divide and to speak the language of a diabetic. Another way to somewhat see into the mind of a diabetic is through reading their poetry. The poem below seemingly gives diabetes a life of its own, directing it as “you”, and uses similes and metaphors to create the picture.

Oh, Dear Diabetes, Where do you live?

By Marcia Skidmore
You live in the countless bottles of countless pills
with counted minutes and counted doses.

You live in my fingertips pricked and bruised
pulsing with numbers, predicting the hours to come.

You live on the pages of my journal, the ink a map
scratched out by purpose, making legend my trials.

You live in my life as predator’s eyes,
eyes devouring, my hands denying that wished for taste.

You live in each lost footfall, the struggle recognized
my step numb, my pain felt, my resolve unbroken

You live, ingrained in my day.
imbedded, inherent, intense.

You live on my path, on the road I travel
I chose to follow the signs and I chose life

You live in my every choice.
You live in my every dream.
You live in my every thought.

You are like the first cup of coffee in the morning
– my life doesn’t continue without
You are like the pattern on a zebra’s back
– expected but unpredictable
You are like a tattoo
– not my skin, but undeniably there
You are like a rose
– the beauty of life that is a lie if we don’t see the thorns
You are the uncommon portrait
– it is different but it hangs on my wall every day

Source:http://www.tudiabetes.org/profile/NoSugarAddedPoetry

The above poem really hits home of the ever present reach of diabetes.  However, the author chooses to “follow the signs” and live. There are many lines of the poem that say so much with so few of words. Two particular lines that speak to me are the first line of the poem reading, “You live in the countless bottles of countless pills with counted minutes and counted doses”.  A diabetic’s life is essentially a numbers game. There is always a need to ensure enough supplies, lancets, test strips, insulin, etc, and always a need to count minutes, carbohydrates, boluses, etc. Another line that sticks is the line that reads, “You are like a tattoo– not my skin, but undeniably there”. Parts of this poem relate to The Birth of Tragedy by Friedrich Nietzsche in that life is art, but only if there is contrast or in other words you only value health if there is illness. The specific line that stimulated the thought was, “You are like a rose—the beauty of life that is a lie if we don’t see the thorns”. Similarly, you could further relate to Nietzche in that suffering in and of itself is not tolerable unless you view it in a life denying or life accepting way. In this case, the poet chooses life.

Nevertheless, diabetes is a disease that even under the strictest of controls, is still uncontrollable. Yet, despite the uncontrollable nature of diabetes, hope for a cure still abounds.

“A Little Bit Longer”

Is there an absolute truth in terms of a cure for diabetes? As we know, there currently is no cure for T1DM, yet Nick Jonas sings the phrase, “A little bit longer, and I’ll be fine”. In essence, Nick Jonas is maintaining hope that a cure will come, and rejecting an absolute truth. The song “A little bit longer” relates to The Mandarin of the Hour by Michael Foucault in which Foucault argues against absolute truth, and says that truth is tied to perspective.

The final piece of art that I wanted to share comes in the form of a film. However, I was unable to access/find the exact part of the film that I wanted to show. Below is a “behind the scenes” video about “Steel Magnolias”.

Steel Magnolias:

Starting at 1:00

In the play/movie “Steel Magnolias”,  the character Shelby is a T1 diabetic. Shelby wants to have a baby despite her doctor’s and mother’s advice not to. Shelby sacrifices her health/body, and gives birth to a beautiful baby boy. Yet, the pregnancy took its toll on Shelby, and Shelby’s kidneys began to fail. Shelby’s mother has spent her life caring for Shelby and ensuring she was as healthy as possible, and despite Shelby going against her mother’s wishes and having a baby anyways, Shelby’s mother desperately loved her grandson and sacrificed one of her kidneys to help save her daughter’s life. In the end, Shelby’s body rejects her kidney, and Shelby passes away. “Steel Magnolias” can be tied to Heart of the World by Hans Urs Von Balthasar in that the ultimate sacrifice is a dual nature, life and death. Shelby sacrificed her life for the life of her son. Similarly, Shelby’s mother sacrificed her kidney to save the life of her daughter. Similarly it can also be tied to the movie “The Book and the Rose” in that love equals sacrifice equals love (Love=sacrifice=love).

However, Steel Magnolias also brings to the forefront ethical issues that may arise in T1DM. For example, was it ethical for Shelby to have a baby, despite the fact that she was advised by the doctors not to and by creating a new life, her life would end. Similarly, there are a variety of other issues, personal, familial, cultural, theological, and ethical that may arise with T1DM.

Personal/family/cultural issues related to T1DM

T1DM is a very personal disease; however, its reach stretches beyond a person to also affect the family. T1DM is often diagnosed in childhood, hence the name juvenile diabetes. A diagnosis of T1DM will change the person and family forever. Meals must now be planned, carbohydrates must now be measured, blood must now be drawn multiple times a day, shots must now be given; in essence, every day must now be carefully planned. Gone are the days of spur of the moment meals or trips. To make matters worse, horror stories surround families of people with T1DM whose kidneys have failed, limbs that have been cut off, and those who once had perfect eyesight now blind, all due to repercussions from poorly controlled diabetes. Fear abounds of coma from hypoglycemia, or ketoacidosis from hyperglycemia, both extremes resulting in a possibility of death.  Every day is a struggle to maintain “good” blood glucose levels, and every three months comes the dread of learning the A1C. No cure to be found, hope is hard to hold on to. There is no “forgetting” about diabetes, or taking a day off; diabetes is something that they have to deal with every day. No day is the same. Perfection is impossible. Some days are good, others are unmanageable. Years ago, diabetes was a death sentence. Now with advances in science, it is possible to manage diabetes and live a long and healthy life. I use the word manage diabetes as opposed control diabetes, because I don’t believe it is possible to control, as there are other factors apart from diet, exercise, and stress factors that can impact blood glucose levels.

It is often difficult for the person to cope with the fact that their life is now so drastically changed. However, the issue is often exacerbated by how society treats people with diabetes. Diabetics are often questioned when they test within site of another person, and made to feel like what they are doing is wrong, when in actuality what they are doing is necessary to survive. This topic is brought up in the video entitled “Sam’s Story”, where Sam talks about the social aspect of diabetes and how everyone looks upon him.

Diabetes impacts the family and those close with a diabetic in that they often worry incessantly about the diabetic, the blood sugars, the food/meals, etc. A parent of a T1DM is responsible for the care of their child, so they must take it upon themselves to make sure that the foods that are eaten are weighed, carbohydrates calculated, appropriate insulin administered, blood glucose levels checked, etc. Parents must also test their child’s blood glucose levels during the night, to ensure their child isn’t hypo/hyperglycemic. Massive pressure is put upon a parent of a child with T1DM. Such is shown in “Steel Magnolias” and also in “Sam’s Story”. Additionally, the siblings of the T1DM are also impacted, as the parents may seem to give more care towards the child with T1DM. Also, the siblings may be discouraged by the change in eating habits of the family that often accompany a diagnosis of T1DM.

Theological issues related to T1DM

Hope. When you look at art, music, or videos made by a person with T1DM, hope is extremely evident. Hope for better blood glucose control, hope for a cure, hope for a better tomorrow. Hope is evident in the song “A Little Bit Longer” performed by the Jonas Brothers. Will T1 diabetics be fine after a little bit longer? Only time will tell. Another theological issue that may come to play is regarding the issue of transplant. Is it right/ethical to take another’s body part as one’s own? Examples of transplants include kidney transplants, or even islet cell transplants. Similarly, is it considered desecrating one’s body with a tattoo, even when the tattoo may help save someone’s life? These are all issues that may cause different reactions based on perspective.

Ethical issues related to T1DM

A variety of ethical issues abound regarding T1DM. For example, one may ask should women with T1DM be allowed to carry a baby/give birth? The pregnancies of T1DM women are high risk, as blood sugars must be kept within range to aid in the growth of a healthy fetus. Also, there has been shown to be an increased risk of T1DM with a parent with T1DM (however, the risk is minimal). Similarly, should there be genetic testing on babies/children to see if they have a certain genotype that has been associated with an increased risk of T1DM? Genetic testing opens a whole other door of ethical issues, but in regards to T1DM, just because a child has the genotype, there is still a very minimal risk of developing T1DM. Once again, “Steel Magnolias” is an example of ethical issues related to T1DM.

Conclusion

I have always had an extreme interest in diabetes education, but this project has helped me to somewhat see through the eyes of a diabetic, or to have a different perspective. The pieces of art help relay the emotions that diabetics feel regularly, and it helped me appreciate my health. It also brought forth the stigma that anyone suffering a disease has to deal with, and it makes me want to fight to educate the public on the necessity of diabetics to test their blood glucose levels/administer insulin without being attacked/looked down upon/questioned by the public. Ignorance is rampant, but as the rates of T2DM increase, I hope that people will become aware of how serious of a disease diabetes is, and how T1 diabetics don’t have a choice in the matter or a cure. No amount of healthy eating, exercise, or lifestyle change will cure a T1 diabetic.

Art has beneficially impacted the T1 diabetic population. I was amazed at how many beautiful and creative pieces of art I was able to find when searching for art pertaining to diabetes. In fact, every year there is a diabetes art day that helps diabetics draw what they may not be able to express in words.  Art is an avenue that could help people cope with the disease.

My goal is to work with diabetic patients, and this project has been beneficial in helping me understand their emotions/given me perspective. I definitely believe art is an avenue to expressing emotion that words can not, so I would like to incorporate art into my practice.

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