Published book
Lights Out
A True Story of a Man’s Descent into Blindness
A schoolboy walks into an eye clinic expecting a prescription for new glasses. He walks out with a diagnosis nobody will say to his face. Lights Out is the account of the years that followed, of a family searching for a cure that does not exist, and of the millions across India living through the same thing with no one to tell.
About the book
Retinitis Pigmentosa takes sight slowly. The retina fails at its edges first, so the world does not go dark all at once. It narrows. A doorway that was there yesterday is not there today. A step that was flat becomes a drop. For a long while the person losing their sight looks entirely ordinary to everyone around them, which is its own particular cruelty.
Lights Out follows that narrowing from the inside. It covers the clinics and the second opinions, the faith healers and the promised cures, the school corridors that turned into obstacle courses, and a family that could not decide whether hope or acceptance would hurt the boy less. It ends where the useful part of the story begins, with a young man working out how to build a life that nobody had told him was still available.
The loss ran across three years. It opened with a diagnosis at 15, the scene in the extract below, and moved through stages in which every fresh examination returned a smaller field of vision. Then, between December 1990 and the following June, it stopped being gradual. Six months took most of what remained. By 1991, the year the author turned 18, almost nothing was left.
The condition affects roughly one in 300 Indians. Most learn about it only when they are already deep inside it. That is the reason the book exists. It was written so that a patient reading it in Chennai or Cuttack, at the point where the doctor has just stopped smiling, would know that someone else had been there and come out the other side.
Read an extract
The Diagnosis
From Lights Out · Ebury Press, Random House India
The doctor stares down at me with a bright instrument strapped to his forehead. He asks me to keep my eyes open, but the beam of light hitting my eyes hurt and pierces my pupils with the force of a bullet. I gasp. The examination is an unending torture that makes dilation seem like a pin-prick. The pain is continuous, unrelenting, and it almost pushes me to the threshold of tolerance. Just as my head starts to shake in pain and tremendous discomfort, a sharp snap of a switch puts out the source of my agony. A minute of blissful darkness follows, and I take a series of deep breaths to relax my stiff muscles and joints. I find it difficult to get up for a few more minutes, lying on the couch, unable to shrug off the paralysing effect of the examination.
Dr. Rakesh usually smiles when he speaks to me. He asks questions about a thousand trivial things just to divert my mind from the impending pain or the intensity of the test. Why didn’t he try any of these today, I wonder? Even now, as he is looking down at me, there’s no trace of a smile on his face.
‘Do you mind stepping outside for a while?’ I’ve never heard him sound so plain and cold.
‘You mean…outside this room?’
‘Yes. I’d like to have a word with your mother alone.’
The initial confusion gives way to shock and anger. What does this doctor think of me anyway? I’m 15, sport a moustache, and I am perfectly capable of being present in the room to listen to my own diagnosis. I have to blink many times before I can see the door to the waiting hall and pull its handle. The blast of light from the well-lit waiting room is enough to drive back the pain. Eyes firmly shut, I breathe deeply once again to relax my stiffening joints and trembling hands. Thankfully, I don’t spend too much time in finding the nearest chair.
It is almost five in the evening. The perfectly square waiting hall appears smaller, as a stream of patients walk in through the portico and mill around the reception desk to announce their arrival for an appointment. Before my thoughts drift in the direction of the eye problems that has brought so many patients to the clinic, I feel Dr Rakesh’s hand pressing on my shoulder. I tilt my head up to listen to what he has to say. ‘Just the usual tests my boy’, or ‘Nothing to worry about, or ‘Here’s your prescription, now go and get your new glasses,’ might have been nicer to hear.
But instead he asks me, ‘So, ready for school from tomorrow?’
There must be something more than that… I watch his face expectantly.
But the doctor merely pats my shoulder, mumbles a weak ‘good luck’, and walks back into his consultation room. I turn towards mother thinking that she has got a prescription for new glasses. It’s already past five and we must hurry to the optical stores to buy my favourite frame and place the order today. However, one look at her face, and I freeze in cold terror.
She’s crying. Tears stream down her cheeks. She’s crying in the full view of strangers, I realize with shock, something I have never seen her do before. ‘God, Ma! What happened? What did he tell you?’ I ask, unable to control my horror.
I shake her shoulders, ignoring the several heads that have already turned in our direction. ‘What’s happened? What did he say?’
‘He says… Oh god, what will I do?’
‘Ma… Please. Tell me what happened!’
‘He says you’re going blind.’
‘Blind? How? I can see now!’
‘He says you have a condition that will gradually make you go blind,’ she tells in a wheezy whisper, the shiny tears still rolling down her cheeks.
‘What!’
She wipes her eyes with a handkerchief, draws a deep breath, and says, ‘It’s a condition called Retinitis Pigmentosa. It’ll eventually make you blind.’
It is my turn to take a deep breath. ‘Okay Ma, okay. Let’s find out if there’s a cure for this condition. We can still do something about it,’ I say in a weak, unconvincing voice, and immediately receive the second blow.
‘Cure? No… He says there’s none.’
This extract was published by the publisher as The Diagnosis on 11 January 2014.
How the sight went
Published descriptions of the book give different ages because they pick different points on this line. Both are correct. The condition arrived at 15 and finished its work at 18, and most of the damage was done in the last six months of that stretch.
Where to buy
The book is also carried by Crossword and Atlantic. Availability changes, so the publisher page above is the reliable list. Some retailers file the book under Laxmi Subramani or Lakshmi Subramani. It is the same author and the same book. The L on the cover stands for Laxmi.
Press and interviews
A Bookworm’s Musing · 18 January 2014
Book review: Lights Out
I commend the author for finding the strength to survive through that painful loss of vision, and becoming who he is now. That slow loss is also well shown through the illustrations inside.
Vinay Leo R, A Bookworm’s Musing
Reviews and Musings · 18 February 2014
Book review: Lights Out, a true story of a man’s descent into blindness
After a long time I read a book that shook me from inside and haunted me long after I was done. … There are places where I cried with him, not for his pain but for the helplessness I felt at that moment.
Reviews and Musings
YourStory · 24 February 2015
How technology is helping this visually impaired journalist see and report
It’s the amazing story of a kid who faced impending blindness with grit and, more importantly, came out of it with his dreams, his zest for life and his sense of humour intact.
Rachna Bisht, YourStory
India Inclusion Summit · 5 August 2016
Lights Out: an insider’s perspective to blindness
The direction our lives take is beyond our control. But the direction determines our experiences and perspectives.
L Subramani, quoted at India Inclusion Summit
Literary Agent Undercover · 27 October 2017
Interview: how Lights Out found its publisher
Mark Malatesta coached the manuscript and the query letter that won this book its deal, and he is the one person outside the family who made the difference between an idea and a contract. The letter drew a call from the agent within four minutes, and offers from three major publishers followed inside a month: Penguin, HarperCollins and Random House. The interview runs 73 minutes. The page carries the audio, a full transcript, and the whole of the first chapter, A Trip to the Doctor.
Why this book exists
Most people who lose their sight to a progressive condition do so without a map. There is no rehabilitation pathway waiting for them, no counsellor who understands the specific grief of watching a world close in, and often no doctor willing to say the word blindness out loud. Families fill the silence with miracle cures. Patients fill it with shame.
India pours enormous sums into preventive eye care, which saves a great deal of sight and is worth every rupee. Almost none of it reaches people whose sight cannot be saved. They are talented, employable and largely invisible, and they are left to work out their own survival.
Lights Out was written to break that silence, and a share of its proceeds went to the support work that followed it.
Retina India
The work that grew out of this book continues through Retina India, the patient support organisation cofounded to give people with Retinitis Pigmentosa and other retinal conditions the information, contacts and rehabilitation that were not available when this story began.
For readers and journalists
Book clubs, disability organisations, medical colleges and newsrooms are welcome to get in touch about readings, talks and interviews. Review copies and permission requests go through the publisher.
Write to aatreyasugavanam@gmail.com