Tennessee Kindred Stories of Disability

A collection of stories from individuals with disabilities, families, friends, and disability service providers in Tennessee



Stephen (17), Blind, Shelby County


"Stephen is confident that he will find a job, but one of his biggest concerns is being turned down simply because of his vision impairment. "

  • A Student interview of self-advocate's Perspective
  • Posted on 3/19/2013

 

Stephen grew up in Memphis, Tennessee. When he was about 9-years-old, he started having recurring headaches. He was given glasses around that time to improve his vision and to alleviate his headaches, but the headaches worsened and began to be accompanied by flashes of light. Stephen did not tell anyone about this, even though there were several occasions when he fainted from the headaches and flashes. On Christmas day in 2005, Stephen was at his grandmother’s house. She asked him to pick up a sock on the floor behind him and Stephen realized he could not see the sock. He had lost almost all vision in his left eye.

Stephen was diagnosed with craniopharyngioma when he was 10-years-old. Craniopharyngioma is a type of tumor that grows on the pituitary gland and affects primarily the optic nerve. Upon discovery of the tumor, surgery was scheduled and doctors planned the best treatment possible. Stephen recalls he went into surgery two days after the initial discovery of the tumor on Christmas Day. After surgery he stayed in the hospital for a few weeks to assess his progress, prevent infection, and watch for any severe side effects. Two weeks after surgery, he had a relapse and doctors discovered he had fluid in his brain. The doctors performed another surgery immediately and put in a shunt—a vacuum-like cleaner in his head that drains the fluid from the brain tumor to his stomach. This operation was done in two surgeries, one to put in the actual shunt and one to connect it to his stomach. Because seventy-five percent of the tumor remained after surgery, radiation began three weeks after surgery in order to reduce the size of the tumor.

Radiation was performed on the tumor for six months consistently four to five times a week. Stephen recalls, “I felt extremely weak and physically tired after treatments, even to the point where my legs gave out one afternoon when I finished.” Radiation is a very tedious and careful procedure, especially when performed on the brain. Stephen talked about being “nailed” to the table and taken into a large radiation room. There was a large mask placed on his face that had several holes so he could breathe easily during the long treatment process. “The mask was very heavy and I think designed to keep my head in place so I wouldn’t move during treatment.” He also spoke strongly about the length of time it took him to calm down in order for treatment to begin as he felt trapped and scared. For almost an hour he would receive his radiation. He was 10-years-old.

Today Stephen is enrolled at the Tennessee School for the Blind (TSB) in Nashville, Tennessee. He has two years remaining before he graduates. Each day at TSB he wakes up early and classes begin at 7:00 in the morning and end at 3:15 in the afternoon. After classes, he does homework and “rec,” (recreational activities) followed by dinner. At TSB Stephen lives in a college-style environment on campus and lives with a roommate. He admitted not getting along with his roommate very well, but he does enjoy living at TSB and how comfortable the beds are compared to the ones at home in Memphis.

A few of the things Stephen enjoys most are reading, writing in his journals, and practicing carpentry. When speaking of carpentry, Stephen talks about taking art classes in school where he works with his hands and occasionally builds small objects from scratch. He enjoys the creativity and hands-on experience carpentry gives him as he creates something great from merely wood and nails.

He enjoys any and all classes that involve technology, world history, and physical science. In addition to these academic classes, he enjoys the physical education and recreational time he has with his classmates.

Though Stephen loves cooking and would love to go to culinary school after he finishes high school, he thinks he will want to get a job so he can help his family. He says his only fear of going into the work world is getting lost in a building. He’s confident that he will find a job but one of his biggest concerns is being turned down simply because of his vision impairment. 

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