What's In A Word

There must be a reason why the major religions of the world emphasise the power of the ‘word.’

John 1:1 (the New International Version) begins with “In the beginning was the Word, and the Word was with God, and the Word was God.” The creation story as per Bhagvata Purana has Brahma waking into darkness, aware of the giant lotus on which he is seated and the stem of the lotus disappearing into nothingness. He then hears two syllables – Tapa – meaning meditate. This long meditation that he embarks on blesses Brahma with the insight required to create the universe. A universe originating from the guidance provided by one word… a universe created on the strength of words. The idea of that appeals to the writer in me.

Small things like the creation of universe aside, words are the building blocks of our world, transmitting culture and religion from one generation to the next. Words are the tools with which we create relationship bridges and safety nets, and mend them when needed. The fact, the meaning, the emotion, the impact of an action, event or a state of being conveyed over time and space. So if I say ‘moon’, irrespective of your religion or nationality, if you understand English, you would know what I am talking about.

A few years ago, when the trend to use phrases like visually impaired instead of blind became a thing, I rolled my eyes. How does changing what you call it change the experience of it? It is just a word, I thought. To replace disabled with ‘differently abled,’ and in the UAE, with ‘people of determination,’ seemed to me a case of tokenism. Instead of making it easier for a disabled person to navigate this world, we seem content to give them a fancy title that applauds them for struggling through it. For all the sugar coating and the painting of glossy topcoats, these new phrase-descriptions do not change the reality of the experience.

But I do get it. I do. This need for euphemism. Some words are frightening.

Words like cancer, prognosis, chemo. Maybe because every time they wanted to kill someone tragically in the movies, the character would end up with cancer, or maybe it is that medical science is only now beginning to come up with cures for some of the cancers that ail this world. Maybe because the suffering is just…

The first few days, every time the doctors used the word cancer, I wanted to scream.

But let us get back to the beginning - and in the beginning was the word. What is a word? For something that is used to define everything and nothing, this monosyllabic word doesn’t have any one definition. Depending on whether you are approaching it from a morphological, phonological, orthographical, semantical, syntactical or philosophic point of view, the definition and understanding of it can change. And then there is the lived, emotive meaning we ascribe to most words. Its flexible nature presages its vulnerability at the hands of time and of the latest linguistic trend.

Ideally, words are clear, simple and exact. In reality, most of them are not. Not because there is a flaw with the words themselves, but because the words are being used by us, and we are, no, not flawed, but varied. When I look at the sky and say, ‘Moon,’ you may be mooning around in the balcony bored to death with my love for the night sky, unless you are a rowdy football fan…

Words are more than just the representation of a fact. It is the tool with which we create our own reality, both inner and outer, as we use them to attribute meaning to the events of our lives.

I am convinced there is a warped law of the universe at work in our lives – the spiritual powers that be pulling the strings so that we are brought face to face with our flawed, human assumptions and prejudices. A few months before her passing, Sakshi began to lose her vision, her hearing and her ability to walk. You could have addressed my daughter’s state with multiple phrases and expressions, but they would not have changed the fact that in the last few months of her life, she was disabled. We even got one of those disability parking cards to enable us to take Sakshi to the hospital and back home with the least amount of difficulty for her. The card described her as a ‘Person of Determination,’ and I thought gratefully, ‘yes, she is.’

Some words tear and shred at us. In the last few months, when we were being herded from one medical test and scan to the next, doctors and nurses would use words like vision impairment or hearing loss or weakening of the extremities. It made the truth manageable. The one time a doctor used the word blind, I nearly lost it. So I do get it. I found it hard to describe my daughter’s physical condition using words like blind, deaf or crippled. I would say stuff like, ‘she has about 5% vision in her right eye and 5% hearing in her right ear.’ I would say, ‘she can walk with assistance.’

I could burn the world in those days. It is still not easy writing about the last few months of Sakshi’s life, and my fingers hover doubtfully over the keyboard as I ponder, ‘Am I okay with using words like blind and deaf?’ The answer is, ‘yes!, but not in relation to my daughter.’ When it comes to describing her medical experience I prefer, and very easily slip into, euphemisms that cushion the cement-hard impact of her lived reality.

Words that I used blithely earlier, with a pedant’s love for calling a spade a spade, now come to a screeching halt on my tongue. I may not tie myself up in knots wondering what a word means to the other person, but I have become more careful, not out of political correctness but out of consideration. I am now more aware of the need for euphemisms in some circumstances. It is not about the reality of someone’s situation. The people involved are intensely aware of the reality of their situation – be it a disability or a bereavement. It is about providing a cushion that softens the blow of the reality.

Maybe with time, as one gets accustomed to one’s lived reality, one may shed the euphemisms – I don’t know! I can only speak based on my daughter’s experience of it. And it is important to note that this conflict with regard to the descriptive words and expressions were (and are) in my head, not hers. She didn’t give a fuck at that point of time. She wanted her vision and her hearing back; she wanted the cancer to go away and she wanted her head and her body to stop hurting. She didn’t care what any of this was called.

On the morning of 5th July, Sakshi had asked me if she could add some items into her Sephora online shopping cart. I had told her to go for it but to keep it to AED500 maximum. Her only source of solace in life at that time was make-up and we indulged her love for it. She would peer at her iPhone by bringing it close to her right eye and then click on a product she liked. Where needed, I would read out the description of the product and the color palette to her.

Later that evening, she handed her phone over to me and asked me to check out her cart. I noticed that she had put in items for a total of AED1489 or so in it. I said, “Baby, this is way more than the 500 we had agreed on.” She cracked her sassy grin at me and said, “Well, you can’t blame me, ma! After all I can’t see!” and laughed at having put one over me. Five hours later she slipped into a coma after a cardiac arrest. Those makeup items are still in her Sephora cart.

Why do I share this story? Because I want you to know that if by some miracle Sakshi had survived but had not regained her vision, after the initial phases of anger, self-pity and sadness, she would have most probably said, “cut out the visually impaired and people of determination shit. I am blind and disabled and I am going to play those cards. Let’s get on with it.” She was good at swallowing the bitter pill. That’s what she did with her cancer – she played the cancer card, and she played it well.

Unlike Sakshi, I have felt the need to lean on certain euphemisms, especially with regard to her. But if I personally were to ever face disability of some kind, I think I would prefer the straightforward and blunt term. These are all suppositions, and one will never truly know until we are actually faced with these realities. I have come to believe that these euphemistic phrases and words are never about the individual’s experience; it is more for the benefit of the rest of us looking on, helpless, unable to change reality or even the perception of it, and therefore doing the next best thing – changing the description of that reality.

Be it disability or be it grief, most of the world doesn’t know what to do with it, except extend pity and tokenism, pretend not to see it or run away in horror. I am now a house divided. A part of me appreciates the cushioning of some of these euphemistic phrases – visually impaired instead of blind, transitioned instead of dead; but the other part of me, the purist, rebels against this. ‘Call a spade a spade,’ it shouts.

This post (in two parts) is about my new and evolving relationship with some specific words. In Part 1, I write about disability. In Part 2, I will write about my relationship with words like death, transition, and bereaved.

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This post has greatly benefited from the insightful feedback and editing of Prem Panicker (Smoke Signals on Substack), and author Abhishek Anicca, who writes about living with disability and chronic illness. A heartfelt thank you to both of them.

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