Namaste Dear Kutumb,
Today I wanted to share an anecdote with you all. As most of you won’t know, even I didn’t, that this month is ‘Retinitis Pigmentosa‘ awareness month. Retinitis Pigmentosa (RP) is a genetic eye disorder which results in gradual destruction of rod and cone cells of the retina which leads to slow vision loss and ultimately blindness. There is no cure for it yet but many health institutions are trying to treat it with the best of their abilities.
The first symptom that manifests in early childhood is night blindness and slowly as the cones die, colour blindness, depth perception acuity, contrast vision degrades throughout the years. What I want to say is that blindness is not a dichotomy but a spectrum. When people ask me,”What can you see? Or can’t you see that?” I just giggle and think,”If I could see, why would I ask you?”. Truth be told, it is not their fault and I don’t put them in the courtroom for being ignorant. But I would like to explain what I see so that they can better comprehend how an RP patient views the world.
Instead of thinking going blind is your vision becoming hazy, for an RP patient, its quite different. It is like some things are just camouflaged in your view and they suddenly manifest when someone really points it out. Or, you can see the thing in your view but are unable to recognise its identity. It feels foreign to your brain and your visual apparatus. I can’t advocate for every RP patient out there beacause RP is progressive and can affect each person in a diverse array of patterns.
Giving a succinct discourse on RP, what an RP patient needs is high contrast and appropriate illumination. If you provide illumination without contrast, it is of no use. If you provide contrast but there is not sufficient illumination, still no use. Magnification and speactacles comes next, as far as I am concerned with my RP progression case. Truth be told I am very grateful to my parents, relatives and friends. They never made me feel that I am disabled in any way. This level of empathy nand sensitivity is one of the many things that I always look upto in them still now.
But no matter how much they tried to make me feel at ease, life always finds a way to show you the mirror and, to be honest, it sucked, it really sucked. When you want to do so many things around you but your body revolts against it, it is one of the most incapacitated feelings you can ever have. You want to drive a bike or a car but have a fear of things vanishing and popping up in front of you at the last minute. Bang!!! And then you either end up at the hospital, the police station or the crematorium depending on your luck. Going to a party on your own? Nope, your vision responds,”Can’t do that” Want to study astrophysics with a telescope, Mr Retina responds,”Error! Stars 404 not found” When you are always pushed back and friction happens every time you plan and try to do something, it sends a subconscious message to your intellect that planning and having a dream is futile and of no use and it slowly dawned upon me, transforming my personality from a ‘Go getter’ to ‘Let it come to me” and that is what made all the difference.
For your information, I haven’t even started the anecdote. When I start speaking or in case, here, typing, it goes on but you are my fam now. I assume a certain intimacy with you all and hence, foolish enough to be vulnerable in front of you, which is one of the wisest and most courageous things you could ever do if done in an appropriate way. So where was I, oh yes, anecdote. ‘Go getter’ is an essential component of the masculine. But my life was constantly pushing me towards the mode of ‘surrender’which, I, as a ‘Go Getter’ absolutely hated but life won. And I must say, that is the most marvellous thing that could ever happen to me.
Fast forward to my second internship in Turkey, time flies fast. I was at a small town in Adana. Everything was foreign to me, the language , the people, the culture, the streets, the transportation system and the most essential, the night time. I had to take the most bizarre bus route to get back to my accommodation which was a dark cave by itself, which will make another interesting anecdote. Till that time, I had mastered the art of surrender or should I say, life made me master it and I will always be grateful for that. I had to change buses to get back to my place and to my horror, I took the bus with the same number but in the opposite route. Come on Subham! How could you be so dumb? Different direction? Yes, different direction. First, travelling at night is itself an adventure for me. It is like travelling through the forbidden forest from Hogwarts with just luminous in your wand. And then, all sorts of vehicles popping up and down and creatures of every kind can bash at you in no time. You don’t know the rules of the land and you still have to act and be the same way. I am trying to make it funny, but at that time, it was not at all funny, I was constantly in my fight or flight mode and it takes a great toll on the nervous system. As the bus passed through a dark locality, suddenly my brain triggered me that this was not what I would usually see while coming back from work. So, I waited and observed how far did it go until it came to the last stop. It was the bus terminal, the last stop and the next bus would take off from the stop after 6 hours because it was 1:00 a.m already.
One of the worst nightmares that an RP patient never wishes even upon his worst enemy, I was living it. I had to show up at work that morning at 9:00 a.m. at the school because I was working as a volunteer teacher for my internship. I left the bus slowly, examining everything that I could with my 5 senses because my eyes didn’t provide me much of a help back then. I was looking for something, anything that I could use to get back. Nothing, all I had was Google maps, google translator, and internet connection and few Turkish liras in my wallet because one of my intelligent Indian friend advised me to keep most of the travel money safe at my dorm . He may be reading this article as I type. So, in short, I didn’t even have the required money to get back. One more thing, even If I get back to my dorm, the main gate could only be opened through a biometric lock whose machine, for some bizarre reason, didn’t recognise my fingerprint and hence, my fingerprint could not be registered in it And here I was, thinking through everything, walking through a dim lighted street using the google maps which showed the destination to be only 03 hrs and 45 minutes away.
But for a very strange reason, instead of freaking my bones out, a serene smile spread on my lips. I knew it, that was it. I had the answer. I started giggling and then laughing. Why? Let me reveal it in my next post. Just kidding, I was just teasing you :). Out of everything that just happened with me, I had become oblivious for a moment, of the most intimate companion who dwells in every being and is always a constant witness to everything that we experience, the source of creation, the parbrahm, the Divine himself. I echoed in my mind,”Oh Govinda, Oh Krishna! You are always present with and in me. There is no deed, whether significant or insignificant, that I ever conducted without you being my witness. You know everything Sakha, I am doing everything I could and am walking towards my dorm even if I see none. I am at your mercy now. Help me or ditch me, I will accept it without any question.” And I kept walking, absolutely chilled, chanting his name and listening to his songs, through the dim, deserted road.
You ask me why I was so chilled. Because, I knew his pressure point. See, the Divine becomes super concerned for you when you do everything you can yet still hold no expectation from them that how the help should come and whether it should even come or not. I would be fine even if the help didn’t arrive. What Help? Oh I didn’t tell that. Silly me. So after walking a few steps from the bus terminal, I found a white car standing by the road. I slowly approached the car, in an alarming way because anything could happen, robbery, kidnapping, murder, god knows what, the possibilities were endless and no one would even know. I peeked inside the closed window and saw a man sleeping on the driver’s seat. He was a cab driver. He wakes up and opens the glass. I showed him through google translator about where I wanted to go and he happily agreed. I hesitantly sat inside thinking of all the horrors that could happen still chanting His name in my mind. Interesting thing to note was that my mind was calm while my body was going through anxiety. I kept my maps onto check if he was taking me through the right path. If not, well, I couldn’t do anything, but still. I opened out my wallet and looking constantly at the fuel meter, comprehending how far can the money take me. I showed the driver that I had only this much and he could leave me when the meter crossed that range. He signalled me to turn on the translator and gibbered on it. It translated,”No worries, I would take you further. It is not safe here. Let me drop you off to the nearest bus stop from your accommodation.” I hesitantly nodded in acceptance. The whole ride, I kept tabs on my map and was constantly holding onto Him in my mind. He stopped the car by the nearest bus top from which my accommodation was only a minute away on foot. I got out and thanked him in Turkish and bowed down to him inside my mind as the immediate manifestation of the divine himself. He happily nodded and left. I was tired, my body was tired, my mind was tired. I echoed in my mind,”Oh Keshav, You drove me here but still I may have to spend the night outside on the streets because I didn’t have anyone’s number whom I could call and ask to come three floors down to open the door for me at the middle of the night when they might be hell tired from work itself.
I stood next to the door, waiting in anticipation that maybe Krishna would perform a miracle for me and the door would magically open like it did when Vasudev took him out of the prison. Well, the door opened but not supernaturally but quite magically. After standing there for a few minutes, some of the acquaintances were returning from a shisha place at the town centre. I stepped back and one of them opened the door and I went inside with them.
It was 02:10 and as I entered my room, I fell dead on my bed, prepping my body and my mind for my work in the morning..And this was among the many anecdotes that I have with him and the intensity ranges from mild to super intense. The aim to share this anecdote is not to make me seem super special. What happened with me can happen with anyone, not the disability part but the help part. The irony is you will only receive the grace of the divine when you realise how ordinary you are. You become such ordinary that in the eyes of others you become extraordinary. That extra void of ordinariness is filled with the grace of the divine in such a way that he becomes your silent partner and that is what makes the ultimate difference. It is my wish and my blessing that you become fortunate enough to make the divine your silent partner and see how your life becomes magical.
Joy and Love