Exclusive interview with Afroditi
During the last and a half year that I have moved in Rotterdam I met many Greek newcomers who left the fatherland to come in the Netherlands to study or to find a job. One of the most interesting Greeks that I met when I visited the Greek community here was Afroditi. In the beginning I didn’t pay a lot of attention to her as I was looking around me all these completely new and unknown faces, but soon she talked to me and her smile was so warm that I sat on a chair next to her and we started a general conversation.
I cannot remember if we talked about it the second pr the third time that we met but I am sure that soon after our first meeting she told me that she is diagnosed with Usher Syndrome. I remember when I heard these two new words I reacted in a spontaneous way by answering “Oh really?”. I knew that I have heard it before (probably during my bachelor studies) but I couldn’t be completely sure. So I asked her to remind me what the exact symptoms of Usher Syndrome were. The truth was that no, I didn’t remember a lot about it, for example that it was a syndrome with such serious symptoms. Moreover, I experienced the biggest surprise when in the next seconds Afroditi told me with completely natural voice and without any hesitation: “Now that we are talking I am wearing hearing aids. Also I don’t have a peripheral vision, so I need to look at you to be sure that I see you”. After these words she was acting like she had talked about the simplest thing in the world. She stood up from the chair and without any difficulty or hesitation she walked full in confidence to the bar of the Greek community to buy a bottle of soda. I was absolutely speechless. How is it possible this person to be diagnosed with this syndrome and has the problems she says?
The same thing I kept wondering all the next months that I was getting to know her better and better. If I wasn’t seeing from time to time her hearing aids on her ears and her cane – a special walking stick – I would have thought that she is fooling us. My disbelief reached its’ highest level when I saw her celebrating Greek Easter in the offices of Greek community and dancing passionately Cretan traditional dances. Honestly I couldn’t find a moment of difficulty or difference in her moves compared to the other people that they were dancing at the same time. Many friends were absolutely surprised when they were informed that Afroditi has a problem with her vision and hearing and can still dance like that. It was that night when I completely realized that there was a really special person in front of me who I wanted to “discover” little by little in the best possible way.
“Will you give me an interview?” I asked her one day when we went out for a coffee and then we ended up eating fruit cake in her place. “Interview?” she asked me with a puzzled face. “Yes, an interview” I said again with more excitement than before. “We will talk about Usher, you will tell me your experience and how is your life with it” I explained to her. “Then we will publish your interview in my blog in order to be read by people who are diagnosed with Usher Syndrome or people with various problems of their vision and/or hearing. Moreover, it is equally important to inform healthy people about what exactly is Usher Syndrome and how a person who is diagnosed with it could live his/her life decently. You could give a very strong message of life and hope if you just speak for your life and if you show to others that you are able to manage the whole situation” I ended up and then I remained silent and I was impatiently waiting to hear her response. Very soon she seemed to make a decision and without much hesitation she answered: “I don’t mind giving an interview. In the past I was embarrassed to talk about me and the syndrome but I don’t feel like that anymore”.
Some days went by and I began to read about Usher Syndrome while simultaneously I was trying to find some good forms of interviews – especially of people who describe diseases –and in this way I started beating the questionnaire that I would use during in our meeting to get a decent and comprehensive interview. I am not a doctor, no matter how much I read about this syndrome I couldn’t read all the studies that have been conducted during last years. Additionally, I didn’t have the experience of taking an interview from a person that has been diagnosed with a serious disease. In the end, I don’t know if I managed to take a really “useful” , comprehensive and complete interview. On the other hand, I am sure that I got a real and spontaneous interview by a determined woman who wanted to speak and share her personal story, how she “sees” and “hears” Usher Syndrome in her body all these years.
I changed this interview as less as possible since the biggest advantage of it is its’ authenticity. In the following document you will read how is the life of a person who has a genetic syndrome, who lived in three different countries, who visited many doctors and who has experience from different health systems. Afroditi is a young, bold woman who managed to live her life in the best way she can as she simply chose to “have the disease, but not to be the disease”. That’s why it is so important her story to be read and heard.Read More »