The story of Yotam from Israel about his life with Becker Muscular Dystrophy

 

“Today, I realize it was a mistake. I should have accepted the disease rather than hidden it”

The story of Yotam Benakot, 22 years old, from Moshav Emunim, Israel, about his life with the genetic disease Becker Muscular Dystrophy.

“I was diagnosed when I was 10 years old, whilst hospitalized. It was only after 4 years that I had a biopsy test and it turned out that I had Becker Muscular Dystrophy. I suffered from pain for many years. I couldn’t get up in the morning. I experienced severe difficulties at school. I know now that my physical activities were not balanced – I tried too hard to participate, but each football game caused me pain for the following two weeks. I have always loved listening to music, watching TV, playing computer games, and going on trips. I also like people, but throughout my school years I didn’t have any friends who knew about my condition. I just didn’t feel comfortable enough to tell them about my disease.”

The teachers were aware of his physical disability, but it was only in 9 th grade that Yotam requested an exemption from physical activities. Yotam put a lot of effort into hiding his difficulties from his surroundings. He believed it was a small problem and didn’t want to perceive himself as sick. His efforts to hide the disease and his attempts to function as everyone else made him suppress his coping with the disease. Yotam was forced to miss many school lessons. The more he missed, the more disconnected he felt. As a result of hiding his disease, he suffered from social isolation, which damaged his self-esteem. His frustration and his disquiet grew and grew.

“No one explained to me what was going on inside my body. I wasn’t given any guidance and didn’t know what I could or could not do. It was hard for me to rationalize to myself and those around me what I was going through.”

Yotam’s behavior prevented people from talking to him about the disease. He never received any emotional care.

“Today, I realize it was a mistake. I should have accepted the disease rather than hidden it, to live a fuller and better life. I chose to change this childhood pattern. During the past 18 months, I have been volunteering in the Israeli army. I use public transportation by myself. I have a reason to get up in the morning. I now know lots of people. I talk to them. I am busy, but I try to listen to my body and understand and accept its limits. I believe I will succeed to build full life, to study and work in a field I am interested in and have a family. I am very sorry that I did not share my difficulties with my friends, and that I participated in physical activities that my body was unable to cope with. I highly recommend that children who have Becker muscular dystrophy learn about the disease and its limitations. I believe that strong relationships with friends and family are the key for a good life. I think it is important not to try to be like everyone else, but to learn to acknowledge your uniqueness.”