I have NF

This episode of True Life shows real people who are living with Neurofibromatosis. I’d say there are two different types of narratives being told among the three persons suffering from Neurofibromatosis (NF). All three people have a mix between a restitution and chaos narrative. Beckha, Amber, and Justin discuss the restitution part of their narrative in that they are all trying to restore their health by removing the tumors associated with NF. They all believe they are going to get better once they have the proper surgical prodecure done, Beckha even risks permanent paralysis in order to remove a tumor on/within her spinal cord. Like the last bullet in lecture explaining the restitution narrative. they truly believe in the Western ideal that there is a cure for every suffering they just have to find it. (Or the right doctor)

All three also have some elements of a chaos narrative. NF can be a degenerative condition if the tumors are in the brain or near the spinal cord, but it can also just be tumors that grow in non life threatening locations. The three people suffering from NF discuss how their own symptoms have had a large effect on their social life and the suffering it has caused.  They all related to being teased and stared and pointed at in school and how having a surgery could drastically improve their life in terms of the confidence they would gain and the independence they could achieve.

 The three different narratives can be useful to fellow patients who are suffering from NF by showing different coping mechanisms or by bringing more attention and awareness to the illness. For instance Beckha had tumor growths in her brain and in the base of her spine. The spinal tumor affected the function of her legs and she had to use a walker and wheelchair. The tumors in her brain affected hearing and eyesight on her left side. She was deaf and blind in her left eye/ear. In no way was she mentally handicapped or slow in any cognitive function but the way she walked and the way her eye didn’t move (looked like a lazy eye) could give the impression she was mentally impaired. Her story and the others like it can help shape the way we view and label others who aren’t visibly healthy or normal on their outward appearance.

This Post Has 3 Comments

  1. Alisyn Korpela says:

    The article I chose pertaining to the disease, Neurofibromatosis, is from The Oprah Winfrey Show dated back in 2010. The patients described above and the patient addressed in the article had many similarities between their experiences with the disease NF. All of the individuals chose to undergo surgery as a form of treatment, reflecting biomedical cultural influences. The effects of this disease had a large impact on the social lives of all the patients. Many experienced bullying and ridicule from fellow classmates and from people within their communities. The physical effects of NF led many people to believe the disease had a negative effect on their mental capacity or level of intelligence, which was not true and offensive to the patients. Ana, the patient from the Oprah Winfrey Show, was offered disabled services from her local college, which she found offensive because she did not feel she was mentally disabled and they were simply judging her from her outward appearance. This is also a good example of the influence of the culture on the experience of the disease, in how society interacts with those suffering as a result of their misconstrued interpretations of NF. Luckily, for a majority of the patients described, support form family and friends was very important in dealing with their experiences of NF.

    Winfrey, Oprah. “Living with Neurofibromatosis.” The Oprah Winfrey Show. Published on May 6, 2010, Accessed on July 27, 2014. http://www.oprah.com/oprahshow/Living-with-Neurofibromatosis.

    Living with Neurofibromatosis

  2. Ethan Gotz says:

    The article that I chose dealing with Neurofibromatosis is a video from healthystate.org called Neurofibromatosis Tumors- Smart Health. It is an informative video of everything Catie has been going through during her experiences with the illness. They describe the disease as being a chronic illness that cause many tumors to grow throughout her body. Catie and her family describe her tumors of being very painful, and says that she has gone through over fifty surgeries to remove these tumors that have been growing in her nerves. These tumors, if not removed in time, can cause disfigurement of many parts of her body. The video focuses on people to be more supportive of the illness because right now the family if focusing on getting extra health insurance to be able to cover the costs of all her surgeries and repairs. The video also goes on to discuss that having NF is not easy because after one triumph comes another challenge in Catie’s life. I think Catie’s life is very similar to life mentioned above in the comment. Although Catie may look different compared to all the other ‘normal’ kids in school, many people treat her like she has a mental illness. In reality, she has no mental handicapped but the misconstrues of the illness make people treat her differently.

    “Nuerofibromatosis- Smart Health”. Healthy State. Uploaded on October 18, 2011. Viewed on July 27, 2014. http://www.youtube.com/watch?v=-BEpx8jd560

  3. Connor DeMars says:

    The article I chose pertaining to neurofibromatosis was about various NF heroes. The child I believe related most to the True Life episode was of a child named Ella Kest. She fractured her tibia and when they went in for initial x-rays, they realized that it wasn’t a normal fracture and neurofibromatosis was inevitable. She was in a leg cast for seven months and was able to run and walk in it. She then had no choice but to get surgery and was put into a full body cast from her chest to her ankles, and had to lay down for about three months. She had night terrors and muscles spasms as a result and was only two years old at this point. At age 4 she had another surgery and was in a wheel chair, but eventually overcame neurofibromatosis because she was in gymnastics and various other activities. She had also succeeded in classes by putting more work in than a normal person and received tutoring help. She was a lot younger than the patients in the True Life episode, but even like Beckha who had tumors at the base of her spine, she had to be in a wheelchair and would even risk paralysis to have surgery. All three patients said that bullying was a problem and had problems in school. Ella was in a full body cast and had to be in a wheelchair as well, so people probably thought that she had some mental disability or defect due to the physical effects, but she was really suffering from neurofibromatosis. Her experience was definitely altered by the culture surrounding us, but Ella was able to prevail in her studies and life.

    Living with NF

    The Children’s Tumor Foundation. “Living With NF.” . http://www.ctf.org/Living-with-NF/ (accessed July 28, 2014).

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