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© Srijeeta Barua


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"Perhaps I was born to an extremely poor family, for my mother had left me in a church when she realized that I was suffering from a rare disease. It is called Alport Syndrome (I learned the name after thirty years of sufferance), in which your kidney is badly affected and that results in your loss of vision and hearing. There was no provision of cure for such a disease in the 1920s, the initial research being held only in 1927. Many people mistook my strange behavior to be a prank and I was left helpless.

I was five when I had first noticed that I had difficulty in seeing things but Sister Eileen considered it to be "fairly normal". I had gradually started feeling back pains and had difficulty in hearing as well. I clearly remember that on 15th November evening, after finishing my psalm practice with the choir I felt sparks emerging in my eyelids. Although I had put on spectacles of high power, my vision was cloudy. On 16th morning, the disaster struck! I could not see anything at all! I felt as if someone had tied a jet black piece of cloth round my eyes. I screamed my heart out and was panic-stricken, being only a girl of seven. Father George understood my problem to be the magnified version of the minor ailment my mother had talked to him about five years ago. They tried to calm me down. Father George said, "Try to make music thy partner. People shall perish but it will be thy immortal friend". I only wondered what a big support was Father, the one from whom I received paternal care. I did not quite pay heed to his point.

Then one day, I received the news that our dear Father George was severely ill and all the other nuns (they were few in number) were taking him to Jerusalem to spend his last days. I called on him and he asked me yet again to spend time with music in his music-room. Then, did I give a serious thought to his proposal and that is why I became what I am today. My condition kept getting worse each day and the new head priest didn't seem to care at all. I had severe pains and in a month or two, I was completely confined to bed- a depressed child who had lost all hopes of being alive. Fortunately, my power of hearing was not entirely lost. One day an apostle paid a visit to our church. He was a savior to me, for he carried me to the music-room after hearing my story from a nun. I was as usual sobbing from pain when he softly asked me whether I liked music. Although I didn't hear him so well, yet, that word excited me and I remembered those happy days when the orchestra played and I had wonderful times. I remembered Father's words. The apostle cured my depressed soul by bringing music back to my life. It added color to my dull, black, emotionless days. I felt that warmth returning again. I slowly regained my strength. He played for me from Father's notebooks until I could walk about. The pieces, namely Marriage of Figaro, Piano Sonatas, Symphonies of Mozart, Beethoven, Vivaldi and Bach were nectar to my heart. I could now visualize things as well using my inner eye.

Today, I feel that music was my doctor who cured me off my psychological fear of being diseased. It guided me and thus made me a normal girl though I was never completely cured. I am ever grateful to music. It is indeed immortal....my death would also not amend its immortality."

--------- Roxanne Stevenson.(1925-1962) [first person to die of Alport Syndrome]

sobbing pain music savior

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