The first time I came across the term ALS when I saw cold water is poured on one’s head to raise money for charity. These ‘sports’ are undecided and have been attributed to multiple foundations. The most commonly accepted origin credits Pete Frates, a Boston College alumnus who was diagnosed with ALS in March 2012. Pat Quinn, a friend of Frates who was diagnosed with ALS in 2013, is also credited for creating the challenge. Earlier, this challenge was called the “Cold Water Challenge” and became accepted and viral on the social media across the globe. The task usually involved the option of either donating money to the cause or having to jump into cold water. The Ice Bucket Challenge had begun by the professional golfers as means to support various pet charities. Later on, the Ice Bucket Challenge was getting called the ALS Ice Bucket Challenge, to promote an awareness of the disease named Amyotrophic lateral sclerosis – ALS, also known as motor neuron disease. Through Ice Bucket Challenge, the organisers used to encourage donations towards research work. It went viral on the social media during July–August 2014. Many people participated for the ALS Association, while some folks opted to donate their money from the Ice Bucket Challenge to other organisations.
The challenge encourages nominated participants to be filmed having a bucket of ice water poured on their heads and then nominating others to do the same. A common proviso is that chosen participants have 24 hours to comply or surrender by way of a charitable financial donation. This was fun to watch but the message behind this act was very huge. People like me who were ignorant about the disease started knowing about it.
Amyotrophic lateral sclerosis is a progressive neurodegenerative disorder that disturbs nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from there to the muscles throughout the body. The progressive deterioration of the motor neurons in ALS eventually leads to the demise of a person. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With controlled muscle action progressively affected, people may lose the ability to speak, eat, move and breathe. They just become vegetable, or you can say they see themselves passing by each day closer to death. I always wondered how these people, suffering from ALS, are dealing bravely with their lives, and was much more curious about the people’s kin and kith around them.
Since then, I started doing a lot of study about ALS — there are different theories available on the internet. One or two rare patients I got to interact and be around. Because when they are alright by health, they are the best normal people. The disease is fatal. For reasons that are still not completely understood, the nerve cells in the brain and spinal cord will gradually worsen. Ultimately one loses the ability to move, speak, swallow and finally breathe. ALS leads to complete paralysis. The average life expectancy is two to five years and some who has lived with ALS for 13 to 15 years.
Shit. This is a real pain and not fun to talk about!
Well, you must be wondering why I am writing about ALS! I recently came to know about a cyclist who never stopped speeding in his life and always pursued his dreams with utmost determination, knowing that his time is limited and he can bid farewell any moment. An ALS Warrior Aditya Sarwankar, who is suffering from ALS, has written his biography, “An ALS Warrior Aditya Sarwankar” which is narrated by Keval J Domadia. It’s worth reading because it’s the story of a man who knows that the survival is not possible but he keeps a positive mind open towards the life. He is fighting his battle within and out but at the same time, he gives his family the courage to face any unexpected trauma. He has the courage to accept what has come his way and he never cursed his fate. He fought and decided to pen down his emotions in the book. It is pain, but accepting the situation and welcoming it with open arms need true courage. ‘Be strong and positive for the family’ is what I think he had in the back of his mind.
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