Minds behind the MIND
Almost every weekend we go out for dinner with our friends, isn’t? But how often do we go for a dinner with a person with a disability?
Life with a rare disease is difficult to manage, most of them have lonely experiences to share with their peers. Today the champions have been establishing themselves as a community called Mobility in Dystrophy (MIND) to share their warrior life stories.
Muscular dystrophy (MD) is a genetic disorder that prevents the formation of proteins necessary for building muscles. A progressive disease in which the severity increases over time. Thus, the disorder is identified as one part initially and starts to spread to another part of the body, leading finally to a complete cessation of physical movement. As a result, a patient cannot be sure whether she/he can do tomorrow what they have been doing till today. Imagine the mental state of someone who goes to sleep tonight wondering what their body has in store for them the next morning! The depth of such a person’s despair cannot be understood by anybody else. It is precisely for this reason that the patients of MD have come together, for each to draw strength from others’ weaknesses.
Mobility in Dystrophy (MIND) is a nascent fellowship of the patients of muscular dystrophy currently in Kerala. MIND has been established with the patronizing aim of sustaining among its sufferers some sense of dynamism at the psychological level even as the body surrenders to restrictions on movement imposed by the disease. The greatest dream is to start a rehabilitation centre for the muscular dystrophy patients since this is a much graver disease as there is no cure. And it’s progressive in nature, affecting mobility as you age.
This article is about three leaders (even though in MIND every member serves as a leader through their efforts) who contribute their selfless support for this organization. A story of accomplishment despite limitations. A story on how each person overcome almost all impossible obstacles possible.
Krishana Kumar KK at the age of 17 was diagnosed with Becker Muscular Dystrophy (BMD), a condition which limits the ability to walk and gets progressively worse over time. Through focused input and exercise, Krishna Kumar developed himself able to manage it very effectively. Even though BMD is comparatively is less severe than other kinds of MDs. Krishna Kumar remembers his childhood with a bunch of bitter experiences of gifts. He found himself among the last men lane in most of the games and physical activities at a young age itself. He always considers failures were just lessons for him to take his life forward and he consistently used to participate in all sports events. “I used to participate 100 meters sprint in my primary school, always I fell down after running few steps and finished at last but always stayed cool about it. Never really bothered about the humiliation I received” says Krishna Kumar.
Krishna Kumar is now 40, an MBA holder staying at Vakathanam, Kottayam District and working at Ernakulam as Assistant Director in a reputed MNC in Infopark and has built his carrier with more than 15 years experience in IT. In 2015 he moved to Cochin from Bangalore, met few like-minded people with MD, the continuous discussions gave birth to Mobility In Dystrophy(MIND) a platform for MD Patients that end with formation of Mobility In Dystrophy(MIND) Trust.
Krishna Kumar is the Chairman and Co-founder of MIND affirms that “we are still running slowly but progressing steadily.” Krishna Kumar tells the world: “Now I can proudly say I am managing MD very well. I can confidently say that I am a Muscular Dystrophy patient. My experiences taught me many things and I would like to share my experience and a knowledge of MD patients. With a strong will, we can manage any disease.”
Asha Mary Tharian was just 23 years old when she found the initial symptoms of muscular dystrophy on her left leg. And as the age and years passed by, the challenge of muscular dystrophy raises its voice in its unique way. Asha Mary was diagnosed with the Limb-girdle muscular dystrophy and her choice of facing it was through prayers, positive attitude and willingness to support the fellow beings. It was during the early stages of muscular dystrophy diagnosis, she prepared and attended for the exams by which she had come up with the result of acquiring and employment. Asha Mary successfully completed her M.Sc and B.Ed, now working as Lower division clerk in the revenue department staying at Kottayam, Amalagiri. However, she follows her dream of being a teacher and keeps her efforts consistent with that along with her activities and coordination for the MIND.
When she was informed about the organization MIND the first step from her part was to arrange a get together for members of MIND and she remembers the Himalayan task of bringing all those muscular dystrophy patients was fulfilled by the sincere efforts of all the leader members, especially Prajith who is also a muscular dystrophy patient. For all those efforts, as they paid well in effectively improving the mingling of each and every member in the organizational system.
Krishnakumar, a 3131-year-old Kollam native boy who has only his voice as a voluntary asset is the next hero of this story. A man of great self support, despite of his medical condition, spinal muscular astrophy type II and handles his life ”bicycle journey hands free”. To be more precise medically he has dealt with zero muscle strength for more than 29 years. Through his colorful life, he not just learned to adapt his body to face every critical condition, but also was greatly successful in getting into the front face of society and to express his own views whether supportive or critical through his social media channels. Being inspired from father, who was an excellent reader and critic, Krishnakumar developed his taste in reading and finds it as the source of power that keeps him fresh and informed.
Through his friendly and funny nature, despite all his mobility issues Krishna Kumar is an extremely successful model in gathering and holding relationships so effectively. This could be the reason, when he reached the mainstream arena of MIND, he could effortlessly rope in his wide and variant contacts for the cause of bringing the blessing of mobility to every dystrophy stricken life possible. Literally speaking, Krishnakumar finds himself as the model of MIND, brilliantly utilizing every single opportunity he gets to address public, he speaks of MIND, its activities and the need to spread the awareness of muscular dystrophy. Krishnakumar tells the world: Enjoy your life, I’m enjoying mine.
MIND is starting from the scratch, initially focused on creating awareness and fighting for their rights. It is not just creating awareness among the public but amongst patients when most are taken for a ride by quacks. The hard fact to digest is “Most people are not aware of the condition. And many get cheated in the process. No state government in the country has a correct database of the muscular dystrophy patients. And these are areas the MIND has got their intend to address. MIND was only formed last year and now it has close to 400 members. MIND has now started its consistent run, relentlessly identifying the patients and has already created a perfect database that clearly documents the patients and the level of their disease. Skill development programmes have been started. Around 10 capable members have been grouped for the making of paper pens and various handicrafts. MIND has its vision of a home for the patients, which can be started with the involvement and support of the government. MIND is in the final works of submitting a proposal to the government. Expecting the support of every single generous heart to contribute their part to this noble cause.
Let’s not be the world that doesn’t stop understanding them rather be with them to break the stereotypes and raise a community of inclusion.