Destiny is controlled by my Mind, not by my Eyes!

Updated: Jun 14, 2021

Vineet Saraiwala, Founder-Atypical Advantage, who has fearlessly embraced his retinitis pigmentosa, a degenerative eye disease, writes apoignant account of his reducing vision and how he derives immense pleasure from tandem bicycle tours, trekking and running marathons.

Living with the realisation that your eyesight is deteriorating is not easy and accepting the reality is challenging. Life is an illusion and you trick your optimistic mind in not believing the reality. The eyesight in my case reduces so slowly that you don’t see any noticeable change in the short term and play with your mind giving assurances that everything is alright. Retinitis pigmentosa is a degenerative eye disease in which vision deteriorates with passage of time. I believe that it is at a perfect intersection between reality and illusion.

How much can I see

The curious often ask me this objective question on how much can I see precisely. The subjective answer to that objective question has 3 parts.

The first one is the reality of what I can see, the second one being the story which I tell my mind on what I am seeing based on non-visual cues and the third one is the cocktail of illusion, reality and past learning cues which create the final perceived image for me. Honestly, speaking I don’t have an answer for it.

There was a time when the eye doctor used to make me read the board with letters to determine my power and since I had memorised those lines, I already knew all the alphabets but I needed to be honest with myself. When I was 8 years old, I could read five lines, when I turned 13, I could read 4 lines, when I was 20, I was still reading 3 lines and currently, I am unable to read anything. What a transformation!

Transformation from playing cricket to watching cricket to no action presently. A change from riding a scooter to cycling on a tandem bike. A change from reading newspaper to hearing your news on the iPhone. The world is so visual in nature from movies, people, environment, work, sports and all recreational activities that you can feel miserable everyday.

It hurts when you could see Sachin at one point to seeing no Sachin. It hurts you when you are at a party. It hurts you at a concert. It hurts you at the movies. It hurts you at work. It hurts you during commute and it hurts you at every moment of your existence. I am in the juncture of the two parallel worlds where you are sighted and blind - reflecting on your past and preparing for the future. I wear spectacles which raises another suspicion that if I can see but the reality is that I don’t know if the spectacles aid me or not.

The spectacles give me some clarity indeed but you are confused because there is no scientific judgement which can tell you this fact other than your mind. Sometimes, I can see better without the spectacles but seeing is so subjective because you have lost your functional vision to a great degree.

Focus on Work

A lot of co-workers and friends often ask me that how can I do so many things in such a short time and my secret for bringing in the focus to work. I will give you the most candid reply that if I don't focus on my work, will feel miserable about my losing eyesight. It's like the genie that has been led out of a bottle and will eat his master, which is the brain, if for a moment there is no work. Focusing on things which you can do is extremely important rather than worrying about your pain. It's like life is playing a game, a trap which has no end in sight and still you play it. can only change things in my control so it's better to accept and move on.

Digital Tools Enabled My Independence

Indian parents are an embodiment of hard work, patience, perseverance and spirituality. My parents had gone to a holy place once where they were asked to give up their favourite food in order to fulfil any wish. They gave up rice and orange respectively and have refrained from it for the past 8 years. What a sacrifice? I don't question their religious beliefs but it hurts me personally and I hope that our wish is fulfilled.

We have tried everything!

We have tried all kinds of magical treatments-Homoeopathy, Ayurveda, Allopathy, Tantrik, saints, meditation, palmistry and a wide variety of strange herbs. We have run on the grass and have even washed our eyes with our own urine. We have taken live injections near the eyes to a failed surgery which destroyed my left eye. Doctors are evil to me and life is unfair. We have listened to all people, passers-by, and distant relatives looking for a ray of hope but somewhere you have to stop.

You only need to accept the reality and live on with gratitude. Gratitude to the supreme being for giving a loving family, sound mind, body and soul. I only don’t have the eyes but I have the vision.

In our chaotic journey of life, we forget simple things which we have and focus on have not. It’s like viewing the glass as half empty vs. half full. It’s double trouble for our family because my younger brother also has retinitis pigmentosa. Doctors say it’s genetic but we have found no cases of eye disorders till 4 generations prior. The golden answer by all doctors to our question on possibility of cure is that research is going on and cure will come soon. We both graduated from the prestigious Indian Institute of Management, Bangalore (IIMB) and are doing well professionally in different directions. My brother is a math wizard and works in Investment banking while I lead projects for a private retail firm.

Tandem biking:

Life is a sum of your struggles and there is pleasure in this pain. I have become addicted to my tandem bike on which I have easily covered 3000+ km. From the high passes of Ladakh to the Deccan Plateau and the beautiful Sahyadris. I love endurance events and have a dream of touring around the world with my dream partner.

When you have something in scarce, you tend to value it. I am extremely happy to still have eyesight left because I can create images based on my past memories and reality which is obviously an illusion to my mind.

I don’t want to defeat retinitis pigmentosa but embrace it as it comes and be prepared for the future. Destiny is controlled by my mind and not my eyes. Cheers to the spirit of humanity!

Vineet Saraiwala is the founder at Atypical Advantage which is Planet’s first Talent platform to hire Talent, Find jobs, Buy product & Art made by persons with Disabilities. He has transformed how people with disabilities shop across India through pioneering concepts like sabke liye which is blend of assistive services & accessible spaces & quiet hour which is a sensory friendly experience for individuals with Autism. He has persued his post graduation from Indian Institute of Management, Bangalore (IIMB) & strongly believes that generation of compassion is the only way to make the world a better place.

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