Amrit Kumar Bakhshy’s life changed forever in 1991. “I didn’t know anything about schizophrenia before Richa… but I have totally neglected myself and wholeheartedly devoted my 24 hours to my child and now, to the community,” he says. Now at 83, he is the primary caregiver for his daughter, who lives with Paranoid Schizophrenia.
For 34 years, Bakshy has fought for better mental health care in India — leading the Schizophrenia Awareness Association, serving at NIMHANS, and advising on national policy. “Where I came for help, I ended up helping,” he reflects.
“I want to give her small joys. Big joys, I sadly can’t give her,” he says. “If she feels happy eating ice cream or having an outing by going to a restaurant, I will take her.” In those moments, sacrifice turns into love.
00:00It's a God-given illness to her, that is mostly genetic illness or in some time environment
00:09or some incident in childhood.
00:12So that is none of her fault or her fault.
00:16So why should we be ashamed of it or why should we hide it?
00:23H.R. has very few symptoms left, what we call residual symptoms.
00:37She is normal as such, but she is not functional.
00:43I mean, she cannot take her own decisions and she has anxiety levels, those kind of things.
00:53But typical symptoms of paranoid schizophrenia are not there.
01:00She was going to Wellham School in Garadun and when she was in her 12th,
01:06at that time it happened, the first episode happened at that time.
01:12I was in my office in World Trade Center and then I got a call from the principal that
01:19you come, your daughter is not well.
01:22So I rushed to Deradun, had a meeting with the principal and the teachers,
01:28talked about the possible reasons and then the prescription which I saw
01:37that paranoid schizophrenia was stated there then.
01:42But what is schizophrenia, I didn't know at that time.
01:45Nor we knew that it is a lifelong problem.
01:48So that medicines helped her and her symptoms went away.
01:57And she could do her exam or some stiffness in hand was there because of her side effects of the medicines.
02:08At that time the first generation medicines, so they had severe side effects.
02:12So that is how we came to know about her illness.
02:17But the series of illness was not known to us.
02:22We came to know about it later gradually.
02:26We were hoping that she would be alright after treatment.
02:30Now I never considered it a stigma.
02:33My wife had some reservations in sharing this her illness with others.
02:42But I always believed that as there is a physical illness, there is a mental illness.
02:49So I didn't hide it.
02:50I was not boasting about it also.
02:52I was going to everybody and telling them that my daughter has schizophrenia.
02:57But at that same time someone asked.
03:00And I would tell them that yes, she has this illness.
03:04Maybe I myself wouldn't believe that there is anything wrong.
03:09As such we have not done any crime.
03:12There is no theft, no robbery.
03:14It is a God-given illness to her.
03:17It is mostly genetic illness or sometimes an environment or some incident in childhood.
03:26So that is none of her fault or her fault.
03:30So why should we be ashamed of it or why should we hide it?
03:36Sometimes some regret also is there that my child her whole life is spoiled.
03:43We never thought of marrying her because we knew that marriage would be a failure.
03:52In our institution also in the beginning people were hiding.
03:57When some activity was to be filmed then they were saying take pictures only from the back.
04:05Not from the face you want to be seen.
04:08This eye is nothing there.
04:10Face can be shown.
04:11We are not using it for commercial purposes.
04:14We are using it for educational purposes.
04:17To create more awareness about it.
04:19And in fact now I devised a form, admission form.
04:24So in that we take a statement from the parents and from the patient that we have no objection to any film or picture taken for educational purposes or for creating awareness.
04:46So that is how I have done that in my life.
04:55Sometimes I wonder and in fact most of the parents wonder why I have to suffer like this.
05:05But otherwise it's a part of life and I am involved in helping others now which gives me a lot of satisfaction.
05:18In the last 10-15 years I have the sense of fulfillment because I am not looking after my daughter but I am looking after and helping thousands of families who have similar problems.
05:40So that is very satisfying.
05:43You see somebody's pain and suffering if you can reduce.
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