It was just another post retirement day in my father's life, event less but happy one - at least it started with a happy note. After feeding variety of birds, stray dogs and protecting a tail-less cat from a crow, my father finally decided to start his daily chores like - doing excercise followed by kapalbhati, bathing, washing his own clothes, doing daily dose of puja with an intention to finish his breakfast before noon - which is rare but possible if my mother keeeps on nagging. Just after bathing he found his lower vision field of left eye becoming dark. Well, my father was one-eyed since last 20 years - reason optic atrophy in the right eye.
My father, who is 77 years old now, first experienced optic atrophy when he was 57. A bizarre office incident left my father under extreme stress for few weeks - one fine morning he woke up blind in one eye. When the initial tremor settled, my father decided to visit Shankara Nethralaya, Chennai - the last hope of such patient. I was in my last years of school days and as usual my extremely protective family did not give me any hint of what's going on. I knew my father was planning to go to Chennai - not much to my surprise as he usually accompanied my uncles going to Chennai for eye operation, heart surgery etc. and they always returned with a success!
Shankar Nethralaya took half a day and an expertise of 5 doctors to declare my father blind in right eye and gave a regular medication to prevent further detoriation of his left eye. His left eye was inpacted by 30% already. Back home he continued eye checkups every 6 months, taking blood thinner medicine every night, and behaving like nothing happened at all. Yes he is that strong - he continued using public transport, walking through crowded roads, doing every single outdoor chores with zero impact. Accidents happened - a car almost ran him over, a motor cycle hit him - none of them were his mistake.
Years passed, I found the reality but the beyond normal activities of my father made me feel 'My father is the strongest of all'. He travelled to USA 3 times, stayed with us and with his three fourth of eye sight enjoyed every bit of New York, snow-white Chicago and lush-green Atlanta suburbs of Georgia.
In his second visit to USA, one fine morning he started drooling, his left side of face fell down, and we thought he was having a stroke. We immediately took him to hospital and fortunately the doctor confirmed it was Bell's palsy - a nerve pinch. We went home happy with loads of steroids for him. He acted normal, though the mis-adjustment of his jaws was keeping him away from his flutes - where his soul sits. He could not eat properly, his left eye is always in tears. But we were happy, he could see by his left eye. Was it an indicator that his nerve is not healthy inside? - never thought of it until 2021 when he had his second attack of atrophy.
After returning to India, few physiotherapy sessions managed to set my father's jaw near perfect, but the tears kept flowing - specially after taking any kind of meal. He was happy though with his life. Of late he was loosing his temper in certain cases, which we thought was normal and reasonable.
We realized our parents are aging, and it is the time when we should head home and be with them. We were planning as minutely as possible, but 2020 brought the surprise in form of pandemic! Our pandemic experience was unique and horrible - at least we thought so - but that story can wait for another day.
We felt more urge to be back home. Our air tickets kept on postponing, but our determination of returning home was good enough to be able to reach Mumbai by September 2020. Kolkata is our hometown, but due to job constraint we did make the compromise of being in Pune. Our reasoning was, We can be back home within 3-4 hours in case of emergency and we will find jobs in Kolkata later on. In all our decisions my 12 years old daughter gave all her support, and sometime surprised us by her opinion. A kid who spent 6 good years in USA is returning home with happy and ambitious face was certainly a proud moment to me and I will cherish that forever!
Back in Pune, we qurantined for 20 days, and started house-hunting and settling gradually. But things started to happen. with in 5 days of move to our rented apartment, my uncle called saying they are suspecting my parents got covid. They are too sick to come out of bed. As planned, we rushed to my parents within hours. For the first time I realized we made the wisest decision of our life to be back to India.
Reaching home I found them lying helpless with high fever, cough, less to nil apetite, headache and sick. Some how by God's grace they were able to get out of sickness within few weeks. My father complained of high eye pressure as if his eyes are coming out. We never tested them for covid - reason being we were 100% sure of it.
Next 2 months were happy reunion - celebration time! Soon the happy moments passed and we faced dark side of life in form of death and serious illness again. This time my father experienced another series of pressure, tension and trauma - and that has initiated the second attack of atrophy - in my opinion.
So, intense mental pressure and aging could be two main factors behind atrophy.
Now back to February 2021, the morning my father first experienced darkness in his left eye. My mother immediately called me and we rushed to near by Disha hospital. The doctor who did prior checkup of my father made no delay to spell atrophy and told nothing could be done. He has to live with near zero eye-sight and prescribed daily dose of steroid along with a bunch of medicine to control blood sugar and pressure. We still were hopeful, as he did not lose all of it, he could do fine with the little vision.
with in 3 days of starting oral steroids, my father completely lost his left eye. We were shocked, we were in tears, we were in trauma once again! A super active man of 77 suddenly became dependent! how to digest the fact that it is never going to come back - at least from Harvard to John Hopkins, from AIIMS to Shankar Nethralaya no body gave any rays of hope so far.
Next 2 weeks passed by revisiting doctors , seeking second opinion, planning next move and keeping my father motivated. Though I highly doubted he required any. He was much more anxious about our work, our health, our finances and us being bothered by him.
Travel restriction due to covid, my father's extreme state of blindness and taking my father's age into consideration, we decided to continue his treatment here in Kolkata. Shankar Nethralaya suggested a CT scan to ensure wheather it was only atrophy or more serious than that - a brain stroke. We did the scan and took the report to Woodland neurology department. The very kind doctor, 'Gospel of God' according to my father suggested a last try and prescribed VEP study of both eyes. He perhaps noticed some signal activity in optic nerve and reccomended intervenous steroid treatment. He was admitted and received 5 days of treatment, resulting nothing. Doctor assured no hope, but to wait for a miracle.
My father's vision stopped to light sensitivity. His right eye can detect light reflection, but no shape and size recognition so far. Left eye had no sight, but recently I am seeing it can sense light too. Or my over ambititious daughter instinct is making me believe- its returning.
What ever it is, it is hard to admit that he has lost it. He is trying hard to be independent, but some times loosing sense of direction. The hardest part so far is getting used to a walking stick. When we wear glasses, it is never hard, but when it comes to stick, you are broken inside. I tried multiple times to visualize what it feels to my father not to have any vision, it is beyond my understanding. I tried multiple times to feel how he is feeling, it always ended in tears - to my surprise I did not see him crying yet - 'My father strongest; still holds true.
We have read almost every article on optic atrophy so far, there are few devices available in USA and UK and Australia but they still need some amount of vision and are way too costly. As some doctors said it will take 6 months to 1 year to stabilize his vision, I am begging 15% of his vision to God. Then at least we can try some devices.
I would like to know what Artificial Intelligence community of India is thinking about it? Will they be busy in putting refrigerator inside a TV or a TV inside a refrigerator and claim it to be the smartest device ever or they will find some feasible solutions of some real problems!
I have heard Ayurveda can do the miracle, but have very few evidences and never felt authentic.
Medical Science already shut the door saying this is among the very few conditions where they can do very little except hoping for the best - nerve can not regenerate, but they do magic some time. I am putting my faith on stem cell treatment and hope soon this become a regular procedure like cataract surgery.
I am hoping to find silimar cases and their progress reports so that I can keep my hopes high and keep the discussion and awareness going on..
