Some retinal disorders like Retinopathy of Prematurity are innate. Another common retinal disease, age related mackular degeneration occurs due to the natural ageing process of humans. Diabetic retinopathy, which, as the name suggests, is due to prolonged and uncontrolled diabetes.
There is a fourth retinal disorder called retinitis pigmentosa which manifests itself during the teens and is degenerative in nature. The retina gradually degenerates over a period of time and reducing the person’s vision. At the moment there is no way of preventing it, slowing down its progress or reversing the damage that has been caused. What this means is, that when retinitis pigmentosa manifests, the person affected is either studying in college or university or has just begun working in his or her chosen carrier or profession.
When the afflicted person learns that he or she has retinitis pigmentosa and explains the road ahead with no light at the end of the tunnel there is an immense emotional trauma to the person and his or her family members. This is like getting a death sentence and waiting for the actual hanging to take place. These are the kind of people who require very strong and effective support through counseling and support groups. This is where Retina India steps in.
Retina India is a not for profit registered charitable trust which brings onto one platform the patients, their family members, retina specialists, counselors, mobility experts, and volunteers. It aims providing a support system to the patients and their family members through scientifically validated information, patient support groups and facilitating research for the treatment and management of retinal disorders.
Advanced research is on in the developed countries and cures like gene therapy and stem cells look very promising. Scientists have even developed an artificial retina wherein an electronic chip is implanted in the retina imparting working vision to the sufferer. All this positive news, patient groups and interaction with role models provide the patients motivation and inspiration to lead a dignified life.
One of the most important projects undertaken by us, in Retina India is the “Scribes and Readers Project”. Scribes are people who write the exam papers for the visually challenged as dictated by him or her and readers are people who read text to the visually challenged be it study material or leisure reading. As a volunteer I have been connected to one such visually challenged person who I visit every Saturday and read to for two to three hours.
Rakesh is a young boy who is studying in the twelfth standard and has lost most of his vision. I read him his English text book every Saturday. These small visits have made me realize how much in life we take for granted. I was surprised his mental prowess, his high concentration levels and impeccable memory. I have to read him a poem aloud only maybe twice and he has it memorized by simply listening. While reading my gaze wanders towards his face, a face without expression. His eyes are shut which I now realize was a posture of intense concentration. I have realized that the fault lies in us only hearing but not listening.
Reading to Rakesh has improved my English in both substance and diction. It has exposed me to a wide variety of genres and writers. It has taught me to speak clearly with complete control over my tone and speed. Sometimes the role is exchanged and I listen, while he enriches my life with his anecdotes and humor which are never out of place.
Sri Aurobindo said “It is darkest before dawn.” Rakesh believes in these lines and there is no trace of self pity in him. He has taken his blindness in his stride and lives life to the fullest with the firm belief of a better, more colorful tomorrow,
I now gather my strength from him and in time of difficulty I think if Rakesh can face his life with grace and a smile so can I.
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