Notes on life, and death

Writer Aisha Chaudhary, 18, breathed her last on January 24, soon after she held the first copy of her first book in her hands. "It seemed as if she had been just waiting for the book," says Niren Chaudhary , her father.
My Little Epiphanies is a compilation of Aisha's thoughts as she remained bedridden for best part of 2014, fighting pulmonary fibrosis, a condition characterized by the hardening of lungs that makes breathing difficult. "She was bedridden and would get bored. So one day I gave her Notes to Myself by Hugh Prather. She read it and said `I'll do better than this' and she started writing," recalls Aditi Chaudhary , Aisha's mother.

In the last five months of her life, Aisha wrote close to 5,000 words and doodled (she was too weak to paint) for the book. She knew the nature of her disease and was aware of the slim chances of survival. The book has won praise from readers across the world, including filmmakers Danny Boyle and Shekhar Kapur and song writer Swanand Kirkire, for its deep understanding of life.

Despite her condition only occasionally do her thoughts seem heavy with despair and the unfairness of the situation: "I was in desperate need to hear that everything would be okay , as death came to say hello"; "I need a whole new pair of shoes. I'm running from myself this time"; "My lungs don't let me cry enough."

Aisha spent her initial years in the company of adults which could explain the remarkable maturity in her writing. She was not al lowed to play or spend time with other children her age because of the risk of infection. Aisha was born with SCIDS or severe combined immunodeficiency syndrome, a rare genetic disorder that severely compromises the immune system and most patients succumb to it during infancy . Aisha, however, breached this time frame because she underwent a bone marrow transplant, standard treatment for SCIDS, when she was only six-months old.

Pulmonary fibrosis is a risk attached to bone marrow transplant and in 2010 Aisha was diagnosed with it. She had to drop out of school but pursued her passions. She gave motivational talks, painted and wrote.

There were, of course, days when she felt defeated and asked her mother if she would be around for Christmas. "So I used to tell her that even I don't know if I will be around for Christmas," says Aditi.

http://timesofindia.indiatimes.com/followceleb.cms?alias=Writer Aisha Chaudhary,SCIDS,Niren Chaudhary,Aditi Chaudhary

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