After reading my book “Lights Out” published by Random House India, which is recently out in the market, patients and non-patients alike have been asking if I have something against them searching for a cure.
It needs no reiteration, but it doesn’t hurt saying it one more time that Retinitis Pigmentosa or other retinal diseases have no cure. If doctors pause for a minute or two, take a deep breath before telling this, we know why. Because it breaks the patient’s heart. The fear of going blind is so overwhelming that they either break down or inclined to think that the doctor is conjuring up a doomsday scenario just to keep him/her hooked to them for a long time. This presents doctors a real catch 22 situation, but most of them go ahead and tell the truth anyway.
Having occupied the patient’s psyche for a long time myself and with the advantage of spending more time interacting with them, I can say with reasonable certainty that the search for cure in the case of many retinal disease patients is also a desperate “do it anything you can” attitude to escape the reality of the disease’s onset.
It could be a touch harsher, but we all need a jolt to bring us to the reality: if doctors –not just one but many legitimate ophthalmic practitioners you bothered to consult—say that no cure exists, then what on earth are you searching for? No, I am not talking about those who diligently follow every news item on the local paper mentioning the word “retina” and “research” in one sentence, but those who run after anyone who imply even vaguely of a possible cure in a hopeless therapy. I own the bragging rights for this, having swallowed all kinds of pills and powders you can imagine and realised they couldn’t help the inevitable slide to vision impairment.
Does it hurt? Sure it does, but what could hurt more would be the eventual realisation of the reality and the even more depressing fact that it’s too late to live the life you had lost on that hopeless search. Even in the general sence, our fear of limitations and the desperate wish for it to go away doesn’t make it vanish from our lives. That limitation could be health related, attitude/behaviour related or even such insignificant thing as facial expressions. There’re a thousand things about you that would drive self-loathing, but as we all have noticed in thousands of examples we read in newspapers or see on the television, only the person who loves himself produces enough self-assurance to win other people’s trust and confidence.
It’s time families of patients with retinal diseases and R.P. in particular learn this. I specifically speak of families because it’s often the family that mounts the search and works defiantly on an escape route which they hope would take their son or sibling away from possible blindness. I request them not to waste their precious resources on unproven cures, but to focus on the patient’s rehabilitation. If cure is non-existent or too expensive to waste your life, then you try making life interesting for the patients. Help them live their life to the fullest. If examples of us the patients who have found interesting things to do in life is anything, your young son or daughter or aging parent can also find interesting things to do. Equip them with technology, stoke whatever passion that lay buried under their hearts and you would have made a crucial difference to their lives. You would surely not regret that because that is every bit worthier than the desperate search.
(*”Lights Out”, the story of a man’s descent into blindness, published by Random House India, is getting launched on Monday February 10, 2014, at the auditorium, Rangoli Metro Arts Centre, near M. G. Road Metro station, Bangaloore, between 6.30 pm and 8.00 pm. Please call 91-740673863)