Lost in the Dark Side of the Moon

I made a new friend when I was about 14 years old. We liked the same music. We read the same books and shared our Phantom and Mandrake comics. I used to be fascinated by his collection of Life magazine, with the stunning photographs of Apollo moon landings. He used to be fascinated by my home-made telescope. At a time when we were struggling with our English, he was studying Russian on his own – not from books, but by listening to Radio Moscow over short-wave radio. We spent our academically important 10th grade of schooling by studying long hours together, late into the night. We were ‘different’ in a way, from the rest of the crowd in our area.

We then went our separate ways in college. Our meetings became less frequent as my world expanded in many dimensions. It was after a year or so, that I first began noticing changes in him during our infrequent meetings. He seemed diffident and unsure of himself. After a couple of months, a common friend said something was really the matter with my friend. I went to his home and met his mom. She was in tears. She said he almost never left his room, and sat by the window the whole day, his hands gripping the window bars. Even children had started making fun of him. I went in his room. He saw me out of the corner of his eye and looked away. He was clearly afraid. Afraid of something, I didn’t know what. I decided to act normal, and asked him if he would come with me for a walk. We walked for about 15 minutes, during which I made general conversation while he seemed terrified.

When I came home later that day, and thought about my friend, I realized he was sick. Mentally ill. He needed to see a psychiatrist. I did not know anyone who knew a psychiatrist, or even anyone who knew anyone who knew a psychiatrist. I myself was barely 16. I knew my family wouldn’t help; they’d rather take him to some miracle worker or recommend him to an astrologer. I then remembered that the clinic where my dentist practiced had a psychiatrist too. The next day, I again went to his home, met his parents, and tried to explain that their son needed to see a doctor.

My friend was Punjabi, a North Indian family. His mom was perennially in tears. His dad, who was almost double my size looked menacing, and couldn’t understand. He simply wanted to shake his son out of whatever he was going through and ‘be a man’. After much persuasion, they agreed to let me try and help, so the next day, we were off to see the doctor. The doctor spoke a few minutes with all of us and prescribed some medicines, after which I spoke with him alone. He said it was schizophrenia, and the medication would help only to a certain extent. He didn’t seem hopeful about my friend.

I was busy dealing with the vicissitudes in my own life for the next few months, after which I once happened to meet my friend. I took him to the terrace of my apartment building, where we used to spend time together. He would never look at me, and start to leave the moment I looked directly at him. I tried my best to make him comfortable, and he began talking slowly. He told me he spoke to Lee Falk every day. Lee Falk spoke to him for hours together, telling him what’s happening and what he should do. He had even shown him his own private luxurious bedroom in his rich mansion, something he never showed anyone – my friend gleefully revealed.

In our next meeting, he told me why he was afraid. He was being pursued and followed day and night by LTTE terrorists, who were out to assassinate him. He narrated detailed experiences of how Lee Falk gave him advance intimation of where they were going to kill him and how he had cleverly foiled five such attempts on his life.

In Zen and the Art of Motorcycle Maintenance, Robert Pirsig writes:

He was insane. And when you look directly at an insane man all you see is a reflection of your own knowledge that he’s insane, which is not to see him at all. To see him you must see what he saw and when you are trying to see the vision of an insane man, an oblique route is the only way to come at it. Otherwise your own opinions block the way.

The far side of the moon is never seen from earth. Humans first directly observed it only when Apollo 8 orbited the Moon. Is that why insane people are called lunatics? When there is Brain Damage, why does there have to be an Eclipse? Why is it Us and Them, and not We? Today, I feel a complex web of emotions. There is a feeling of guilt that I didn’t help as much as I could have. There is also the realization that even if I knew about mental illness at that young age, it was only from an academic perspective. I didn’t have the psychological or real-world wherewithal to effectively help. At the end of it all, there is a sense of loss.

I lost my friend to the Dark Side of the Moon, and he must be saying:

And if the cloud bursts thunder in your ear,
You shout and no one seems to hear,
And if the band you’re in starts playing different tunes,
I’ll see you on the dark side of the moon

(In remembrance of World Mental Health Day, 10th October 2007, and my friend.)

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38 thoughts on “Lost in the Dark Side of the Moon

  1. Mahendra: This is very tragic and alas, happening in India by the millions. Yet official data suggest that the incidence of mental health issues is very low and society does it best to sweep it under the carpet. What a filthy under-the-carpet we must have!

    I had written a post on Indian Economy blog in July the responses to which are very telling:

    http://indianeconomy.org/2007/07/06/mental-health-in-the-workplace-food-for-thought/

    I am sorry for you, for his parents and above all for him, because it is such a waste of a life.

    Thanks for telling us the story.

  2. One thing which I have heard psychiatrists say is that you can or should never get married to a schizophrenic. It is impossible to do so, it seems.
    Interesting story, and it is important to bear that these diseases run in families, too….

  3. Shefaly: Thank you for reading. Your article is very well written.

    Yes, the under-the-carpet in India is its Dark Side.

    This story is from the 80s. Since then things have changed a lot…for the better. For e.g. referring to the context of your article, IBM in Pune has a confidential counselor program free for employees. Any employee having any problems can directly, confidentially approach the counselor. These kinds of workplace ethics are now gaining acceptance here.

  4. Rambodoc: Thanks for your comment, but I’m sorry I didn’t get what you meant by “you can or should never get married” – did you mean cannot?

    Yes, some of the mental illnesses are hereditary and that makes the treatment and recovery all the more difficult. This friend’s family was starkedly different and asocial, indicating hereditary issues, and that’s why the doctor was not hopeful.

  5. Rambodoc:

    “One thing which I have heard psychiatrists say is that you can or should never get married to a schizophrenic. It is impossible to do so, it seems.”

    This is an example of how misleading impressions are perpetuated by psychiatrists too. In adults, their late teens or 20s appear to be the most common age at which a psychotic episode happens. Late diagnosis is rare. Usually precipitated by some other disorder such as paranoid psychosis. Almost always this is the point at which diagnosis happens and treatment starts. (Experimental procedures such as brain scans may allow early ‘detection’ but there is no payer willing to cover these procedures in most countries.)

    Nearly a third of these adults recover fully and never remember the episode and go on to lead normal lives. A small percentage suffer from chronic repeat episodes. The rest cope with support from families and communities.

    Needless to say many get married and have children. Yes there is a finite possibility of children having schizophrenia too but it is about 10% with one parent. People take larger risks with many more possible – and more definitely hereditary – ailments with having children.

    Misinformation apart, rogue practices in psychiatry in India run to GPs who are not qualified, but prescribe anti-psychotic medication, which pharmacies fill with gay abandon.

    As the economic conditions change in India, and social structures collapse, people will need better coping strategies and better awareness of these issues.

    Psychiatrists need to play a role in creating this awareness too, rather than just using the growing incidence to print money…

    Thanks.

  6. Mahendra: Thanks for reading the article over on the IE blog. I am still a guest writer there and will return after the thesis with more.

    The number of desi blogs discussing their work pressures is scary. We need to do something now – awareness and action – before like all other boats, we miss this too.

    My s-i-l, a very compassionate doctor, and I have discussed creating a foundation for awareness of such issues mainly in the poor and taking coping strategies to them. Lets see how it takes shape. We need funds, expertise and seed programmes…

    Thanks.

  7. Such a touching story Mahendra.
    I hope genetic testing becomes mandatory for pregnant women at least the non invasive triple test. Especially considering the lack of facilities and knowledge to care for mentally ill patients.
    I remember one of our college trips to a waterfalls in Tamil Nadu. A bus full of mentally ill women patients were brought to take bath in the waterfalls, they were all chained and made to squat together using a wooden stick; that is the single most horrible memory i have of the entire trip.

  8. Madhuri:

    The speed with which pregnancy has been “medicalised” in the last quarter of the 20th century is scary. The genetic paradigm can blind us to the environmental factors that drive up the incidence of a disease. Yes oddly genetic explanations are liberating to some extent, because it removes blame from parenting, but it is a slippery ethical slope.

    Different countries having different standards for PGD or prenatal diagnosis creates asymmetries which leave the whole thing open to exploitation.

    The story of your trip is a great illustration of the big lacuna of understanding of mental health issues in India. It is sad and for me, personally, an impetus to act.

    Like you said on Nita’s blog y’day, we have to start with our own ecosystem first.

  9. Mahendra – You wrote this so well and outline the familial attitudes that arose in response to your friend’s decline into schizophrenia. My own sister experienced a psychotic break in her third year at university. Yet, in spite of the fact that our father was a physician, our family refused to acknowledge her difficulties and to seek help for her. “What’s wrong with I?” became the hopeless and helpless refrain, followed by “She needs to buck up.”
    She has struggled her whole life to cope with all that living threw at her, and only sought treatment in her early 50s.
    Sweeping such a reality under a rug does a disservice to the individual suffering, the family and the whole community.
    Here in Canada we have groups of homeless people living on the streets under horrific conditions. Many of these persons are mentally ill. Still, a prevalent attitude toward them is “Move them on… into another neighbourhood, back into mental hospitals, into group homes (but not in our community 0 you know what that does to property values, etc.) G

  10. A touching story.It is infact scary.People in India are still hesitant to visit the psychiatrists.We definitely need councellars at workplace.Workstress is increasing by the day and people are finding it hard to cope up with the day to day pressures of life.

  11. Very disturbing and very touching. Mental health problems are hard to come to terms for the family. Thanks for sharing this personal experience.

  12. @Shefaly,
    I know that environmental factors do play a big role in mental health but at least one step to counter some of the other causes like hereditary would be to make PGD mandatory. As you say it should be universally generalized.
    I understand it is easy to blame it on the ‘genes’ and i was thinking of writing something about it, but my concern is that there are many genetic causes of mental illness and at least PGD would make it possible for parents to have an option, especially when there is no absolute cure for these diseases yet and since there is massive amount of ignorance related to them.
    A few years back i was all set to go back to India and work at Manovikas kendra at kolkata, but due to circumstances things did not materialize.
    However as you are preparing to open an awareness program, i would love to be a part of it.

  13. @ Madhuri:

    Here is a question.

    Let’s say a parent has schizophrenia and knows it. He/ she gets married and there is a finite chance that the baby will probably get schizophrenia. Having lived his/ her own life on his/ her own terms, to what extent is it justifiable that the parent can decide to terminate the foetus with a risk that the parent is passing on to the foetus?

    Ethical dilemmas like this require PGD to be closely controlled. Schizophrenia can be managed with medication, counselling and support systems. Cystic fibrosis, for instance, cannot. Which is why some things are allowable in testing, others are not.

    I did some work on gene therapy for the UK Parliament, and got to see an ethics committee in action. I do not envy them their job frankly!

    I am not ready yet for an awareness programme but am considering creating one with my sister in law and a friend. I shall keep you posted.

    Thanks.

  14. Shefaly,
    No ethical issues here in the hypothetical situation you described. It is the mother’s prerogative alone.
    Mahendra,
    Sorry, that was a typo, as you would have imagined.

  15. Shefaly and all: an important update to my comment above about IBM’s confidential program for its employees: I just learnt that most probably, the program is NOT confidential at all.

    The counselor has to “report” on each employee’s session, and send a report to IBM, including what transpired in the session AND “goals” for the next session. Worse, the employees do not have any idea that information about their session is being communicated back to their employer, IBM.

    I have 95% confirmation of this at present, will dig out more and update. This is ALARMING!

  16. Madhuri: Thank you. I’m glad it touched you.

    I’m not aware and have not yet thought about genetic testing for pregnant women. Thank you for getting me thinking about it.

    //A bus full of mentally ill women patients were brought to take bath in the waterfalls, they were all chained and made to squat together using a wooden stick…//
    Yes, this is horrific indeed. I have many individual stories to share, but this group condemnation is indeed very, very, horrific. You touched my heart with your comment…I don’t know what to say.

  17. SuburbanLife: Thank you.

    It is in a way illuminating and in a way very sad, to see how people from different cultures, economic strata, and nationalities, tend to treat people with mental illness in the same condescending way out of pure lack of education.

    Thank you for sharing your sister’s story. I’m all the more shocked by what you share because your father was a physician! I just fail to understand this. If scientifically educated medical practitioners fail to understand the disease, what hope can we have for the ordinary folk?

    //Sweeping such a reality under a rug does a disservice to the individual suffering, the family and the whole community.//
    You write very well. You’ve taken the words that I hoped I would’ve written. Because I think exactly the same way.

    It is not just the homeless who’re mentally ill in India. Here, mentally ill people come from all walks of life, from all economic strata, and they’re all equally discriminated against.

    All: Those who’re reading this are indeed interested in the mental health situation regarding schizophrenics in India. I would like to share one more “belief” that is prevalent in India: girls who suffer from schizophrenia are not diagnosed as such, but married off by parents who think that “marriage will cure all her problems”.

    I’m not speaking hypothetically. I have sources to back what I’m saying.

  18. @Shefaly,
    Do you at least agree that for those diseases that can be controlled with medication, PGD will prepare the parents better to deal with a child’s illness right from the beginning instead of years after onset of symptoms? I do.
    It is better if the parent has controlled his/her disease because that will at least give them a knowledge to raise their children.
    Not to mention there are lot of mental illness caused due to age related chromosomal abnormalities which should definitely be checked before the baby is born.
    One of my closest friends, did not undergo amniocentesis and had a baby who was otherwise normal but had a cleft palate. The two day old baby had to undergo hoards of blood tests for genetic diseases which could lead to the cleft palate. This caused my friend and us a lot of anxiety for so many weeks. I think like her, i would definitely do a one day of genetic testing rather than have months of anxiety and suffering.

  19. Prerna: Thank you. I’m glad it touched you. It not only was scary, it is still scary to me. I remember talking to my friend in vivid detail. When he was gleefully pointing out how Lee Falk had chosen him, I had to gleefully respond with empathy. Only then would he reveal more. I know (almost as a fact), that I’m the only one who knows what he was seeing and believing. This was the greatest challenge to my empathetic skills: to be able to empathize with a hallucinatory schizophrenic person who was my friend.

    Yes, no enlightened person doubts that we need to create a better environment so that people are freely able to consult psychiatrists. As you point out, increasing work pressures are making this more and more important!

    DotMom: Thank you for your sensitivity. I’m so glad I can reach so many people through this blog. I’m probably reaching out to more people about this than I personally was able to do so in my life since!

  20. @ Madhuri:

    “Do you at least agree that for those diseases that can be controlled with medication, PGD will prepare the parents better to deal with a child’s illness right from the beginning instead of years after onset of symptoms? I do.”

    On that this is what I believe:

    I believe that no amount of preparation actually readies parents to face the illness and decline of a child.

    Most parents – in the west – even without PGD etc are told about the risks their child has, based on the age and health profile of parents. A friend who just had her first baby at 36 was told that their Down’s syndrome probability was 1 in 1200. It means nothing really in tangible terms till the baby is born..

    Some people also refuse to have tests which are now seen as ‘normal’. A friend in Cambridge and his wife refused amnio although his wife was geriatric mother, and they have a daughter who has Down’s. For my part as a friend, I keep him abreast of all research in this area and all policy developments which will help them as parents.

    Madhuri, both of us know that incidents may make things tangible for us as humans but they do not address issues at a population level, which is where the ethics get murky. The further removed it is, the easier

    If we eliminate all the possible ‘imperfect’ people, how far are we from gender selection (cf female foeticide thread on Nita’s blog) and designer babies?

    @ Mahendra: That empathy is the hardest thing to find inside us. Saying we agree with them when we do not…

    That IBM programme not being confidential does not surprise me. Patient confidentiality in India is a non-existent construct. At the workplace, an employee is done for if the manager is unsympathetic..

    Thanks for sharing this thread with us. I feel passionately about this issue – having seen some lives destroyed by the ignorance around them. I have also seen how a family’s support, empathy and courage can help a person recover fully. At the same time I feel fortunate that life allowed me to learn so much so I can do my bit to prevent other promising lives go the same way.

    Thanks.

  21. Shefaly: //This is an example of how misleading impressions are perpetuated by psychiatrists too.//
    I request you not to see the opinions of psychiatrists and psychologists practising in India from an academic, universal, and medically objective ‘lens’ that can lead you to myopic observations like the above. While your opinions might be justified medically, mental illnesses and their treatment are a very social affair, not just medical ones.

    If you personally talk with a psychiatrist or counselor why this “you should not marry schizophrenics” opinion is held and propagated in India, you might get better insights. Remember, it is not just a medical issue, but largely, a social one.

    //In adults, their late teens or 20s appear to be the most common age at which a psychotic episode happens.//
    Schizophrenic symptoms typically start appearing after puberty. Typically, it is diagnosed between 15-25 years of age.

    //Late diagnosis is rare.//
    I do not know how you’re generalizing this, and whether you’re referring to universal statistics or Indian ones. In India, in most cases, the truth is that there is no diagnosis at all. Thousands of people are simply admitted to mental institutions as being “mad”, without there being any diagnosis at all.

    //Usually precipitated by some other disorder such as paranoid psychosis. Almost always this is the point at which diagnosis happens and treatment starts.//
    Not in India. Like I mentioned in a previous comment above, when the symptoms start appearing, it doesn’t lead to diagnosis, but to marriage (in case of girls).

    //Nearly a third of these adults recover fully and never remember the episode and go on to lead normal lives. A small percentage suffer from chronic repeat episodes. The rest cope with support from families and communities.//
    Again, I do not know which base population you’re referring to when you cite these statistics. If you’re saying nearly a third of Indian schizophrenics recover fully and go on to lead normal lives, let me again caution you. I checked with a professional counselor and she confirms that there cannot be any Indian statistics regarding mental illnesses worth talking about, forget referencing.

    When you say a small percentage suffer from chronic repeat episodes, you’re vastly, I repeat, vastly, underestimating the problem. I personally know how schizophrenics are treated in India, how they are ostracized not only from society, but from their own families as well.

    //Needless to say many get married and have children. Yes there is a finite possibility of children having schizophrenia too but it is about 10% with one parent. People take larger risks with many more possible – and more definitely hereditary – ailments with having children.//
    Risk has two attributes – probability and impact. The extent of risk is the product of the two. Which ailments have a higher risk? From heart disease to diabetes, many diseases have a lot of probability, but the impact is controllable and treatable. In the case of schizophrenia, the probability might be lesser, but the impact is so high, that professional psychiatrists and psychologists advise against having children with schizophrenics.

    Note that when interpreting someone’s opinion of marrying or not marrying, the respondents assume that it is children that is under the discussion radar. But, marriage doesn’t necessarily mean children. So, I also checked about what is the professional opinion regarding marriage without children, and the answer is the same in the Indian context: it is not recommended. The reasons are too manifold for me to elaborate in these comments.

    Given all this, both psychiatrists and psychologists advise against marriage for schizophrenics. I am currently researching a lot into this issue with the help of a professional counselor and am still learning from her experience. But I can safely state that the opinion against schizophrenics marrying in the Indian context is not borne out of lack of knowledge, stubbornness, commercialization, and the like. It is a very knowledgeable, reasoned opinion borne out of knowledge about the Indian society.

    //Misinformation apart, rogue practices in psychiatry in India run to GPs who are not qualified, but prescribe anti-psychotic medication, which pharmacies fill with gay abandon.//
    True. Forget GPs, I would even say that all that psychiatrists in India, are interested in, is prescribing medicines. That is why, I think that it is the psychologists, the counselors, who are really the most helpful.

    //As the economic conditions change in India, and social structures collapse, people will need better coping strategies and better awareness of these issues.//
    No one in India seems to be needing any better strategies or awareness. They continue to flock to the religious and superstitious folks. The changes in economic conditions in India are irrelevant! Social structures collapsing – whatever you’re referring to – have nothing to do with mental illness and how it is perceived socially.

    //Psychiatrists need to play a role in creating this awareness too, rather than just using the growing incidence to print money//
    Absolutely

  22. You are right shefaly,
    Awareness and knowledge is most important.
    But i do not see awareness and knowledge suddenly transforming the Indian society within my life time, look at what happened to the dowry system. Do you think the people who offer dowry are not aware or knowledgeable?
    Dont get me wrong, i do not think of anyone as imperfect. I am not for designer babies at all. But until such a day when a mentally retarded person is treated equally in our society, i do recommend genetic counseling for everyone. This can and should occur hand in hand with spreading awareness.

  23. Beautifully written.

    I do not want to go in the social linguistics of what you wrote.

    What matters is that you tried to be there for him as much as you could.

    I have lost a couple of friends who were very much a part of my childhood. And even today when I remember them, I regret that I could not say a proper goodbye.

    You wrote this piece amazingly well.

    Thanks

  24. Very touching and scary indeed… and a perfect ending by Pink Floyd’s writings. In India we still have taboo about going to psychiatrists and most of us think of mental illness as incurable. But all I can offer here are my sympathies… and good that you were there for him…. thats the best help, to start with.

  25. Mahendra:

    The crucial segment missing in my post was “if access to the best treatment were available, then…”.

    To help 2 families in India whom I know, over the last 5 years or so, I have served as a counsellor, albeit formally untrained – if the paranoid schizophrenia patient can make even one relationship based on trust then there is hope and usually it is the psychiatrist but in these cases, it was I who was the keeper of this trust. Naturally I have had to draw upon other people. One of them is my rakhi-brother who is a Harvard Medical School Professor in psychiatry; he also put me in touch with 7 or 8 psychiatrists and psychotherapists in India. I also made contact with NIMHANS and spoke at length with specialists there. So these are not my idle opinions based on human compassion but things I have learnt from serving as the support mechanism for 2 people who chose me, out of all humanity, to be the recipient of their trust. One has recovered and is functioning without medication after nearly 2 years; one is finding her life is in disrepair. One patient accepted there was a problem, one did not. One had a high rate of compliance with drug regimen, the other shunned them. The former got help from a therapist and family and me, the latter did not.

    Alas, psychotherapy has its limits and even psychotherapists acknowledge that. Chemical interventions are required in many cases.

    Thanks.

  26. Dear Arzan: Thank you very much for your kind words.

    //What matters is that you tried to be there for him as much as you could.//
    Thank you. Unfortunately, at the same time that he was slipping into greater depths, my maternal grandfather was on his deathbed in our home. He was the only grandfather I had because my paternal one passed away when my Dad was 4 years old. It was a very difficult time, with all relatives from different places staying at our place because of our grandfather’s condition. It was unfortunate that this happened simultaneously.

    //I have lost a couple of friends who were very much a part of my childhood. And even today when I remember them, I regret that I could not say a proper goodbye.//
    Once again, like Suburbanlife above, you’re taking words out of my mind. I deeply understand your feelings as few people do. Not being able to say a proper goodbye leaves a lasting, permanent, mark in the heart. It never goes away.

    //You wrote this piece amazingly well.//
    Thank you. I feel very honored and humbled, but am glad that it touched you.

  27. Rambodoc: Thanks for that! 🙂

    Nita: Thank you.

    Oemar: Nice to see you back. Thanks for being the first one to comment on the Pink Floyd angle. Many months back, when I first started this blog, I had an idea for a post that juxtaposed Pirsig’s comment in Zen and the Art of Motorcyle Maintenance with Pink Floyd’s Dark Side of the Moon. I was in fact going to post just about this link between the two as I thought it to be extraordinary. I never came around to posting it. Then on the occasion of The World Mental Health Day, I came up with this post, and brought those long awaited thoughts into this post. My wife calls this attitude (I dare not say ability) – “knitting” ideas together!

    //good that you were there for him… thats the best help, to start with.//
    Thank you. I tried, that’s all I can say. You are very right, being there is the first step towards helping.

  28. Shefaly: //The crucial segment missing in my post was “if access to the best treatment were available, then…//
    Yes indeed. And that is a very, very big If-Then. And over and above it, even if access is available, that doesn’t mean people will avail of that access. That is the sad part about society in India, as some of the comments above show.

    //…if the paranoid schizophrenia patient can make even one relationship based on trust then there is hope and usually it is the psychiatrist//
    I know how paranoid schizophrenics are successfully rehabilitated in India to some extent. There is a concept of a “half way home”, and I know people who’ve worked as psychotherapists in such homes. The “half way home” is a place where recovering patients live in a simulated family life. Those who are able to control their hallucinatory episodes are then sent forward to their real homes. Some of the stories from such half-way homes are indeed gruesome, some are inspiring.

    I know of a girl who was “married off” by her mother thinking that her apparent “strangeness” would be cured with marriage. The mother did not divulge any details of the girl’s sickness to her elder sister and father, both of whom were busy with their own lives.

    She was ultimately divorced, because her in-laws couldn’t deal with her sickness, and she’s back at home. Now, with full treatment including medication and counseling, she is living with her family. She has been trained in such a way, that whenever she has hallucinatory and self-harming ideas, she expresses them to her mother and sister. She says, “Now, let us all kill ourselves.” Her mother and sister are now trained as well, and know how to respond to this.

    This is the trust that can exist only between her and her mother. It doesn’t and usually cannot exist with any in-laws, however supportive they may be. This is one of the reasons, why psychiatrists and psycho-therapists advise against marrying schizophrenics in India.

    //So these are not my idle opinions based on human compassion but things I have learnt from serving as the support mechanism for 2 people who chose me, out of all humanity, to be the recipient of their trust.//

    I cannot tell you how glad and internally happy I am that someone like you is taking these pains! How I wish society were like you! Alas, that is not the case however. I am not referring to your opinions as ‘idle’, rather, I’m very happy that you are responding to this conversation with the passion that is so obvious. I wish more people respond to it like this – it is far from ‘idle’.

    //One has recovered and is functioning without medication after nearly 2 years; one is finding her life is in disrepair. One patient accepted there was a problem, one did not. One had a high rate of compliance with drug regimen, the other shunned them. The former got help from a therapist and family and me, the latter did not.//
    Thank you for sharing your experience. Each case has to be handled and treated individually. As I’ve said before, this is a social issue, as much as it is a medical one.

    //Alas, psychotherapy has its limits and even psychotherapists acknowledge that. Chemical interventions are required in many cases.//
    Of course! Chemical interventions are required in almost all cases of schizophrenia. Psychotherapy is just a supporting factor. The sad fact, as many have pointed out in these comments, is the social stigma associated with going to a psychiatrist in India. A psychotherapist is not labelled as a “mental doctor”, unlike a psychiatrist, and hence is more accessible in the social context. While they do their best in referring cases to psychiatrists, not all patients and their families do so. The people who actually visit psychiatrists is a miniscule number in terms of percentage. And given India’s population, this miniscule percentage turns out to be hordes of people in queues outside and inside psychiatrists’ clinics. No wonder then, that all that psychiatrists do is prescribe medicines, give ECTs, and send them back.

    The number of people waiting to get an ECT in a private hospital in Pune will amaze you! One has to wait for 4 or more hours, or come back another day.

    This is the mental illness scene in India. If you want to understand more, you need to talk to psychotherapists, not psychiatrists.

    Once again, I’m sharing this out of passion, because I see you are passionate about this as well. And I cannot tell you how much I respect and admire your passion, because there are very few people who are even thinking about mental illness in India, forget doing something about it. I humbly say “Thank You”, to have the patience to read this and your passion behind doing so.

    Shefaly, once again, thank you.

  29. Madhuri: I’d said “I’m not aware and have not yet thought about genetic testing for pregnant women. Thank you for getting me thinking about it.”

    Now, after thinking about it, I think no. No testing of any sort should be mandatory. It is up to the wife as well as the husband to decide what sort of testing is required before and after marriage.

    Shefaly: //What if the father is the person passing on the illness?//
    I agree with Rambodoc, that there are no ethical issues involved here for me. Whether to have a pre-nup, whether to have AIDS tests done, whether to have any and all sort of tests, before or after marriage, is a prerogative of the male (husband) and female (wife) involved. The government cannot and should not have any such say in the matter. (You didn’t say ‘government’, this comes from ‘mandatory’ from Madhuri’s comment).

    To consider your example:
    //Let’s say a parent has schizophrenia and knows it. He/ she gets married and there is a finite chance that the baby will probably get schizophrenia. Having lived his/ her own life on his/ her own terms, to what extent is it justifiable that the parent can decide to terminate the foetus with a risk that the parent is passing on to the foetus?//

    When your parent got married, did he or did he not reveal his schizophrenia to his wife? If he did not, he has been dishonest. Talking about further and future questions of his morality, and whether they are justified or not, is immaterial – he may act dishonestly in whatever way he chooses.

    From an objective viewpoint, there are no ethical questions involved, as the master-baiter says.

  30. I have had a somewhat similar experience. There was this classmate of mine, he was very anti social and used to have huge difficulties in studies. It was quite obvious that he had problems but his parents wanted him to study in a normal school, not in a school for ‘retards’ as they called them. It was only when they realized that their son didn’t have a future in this system, that they decided to transfer him to the school for mentally challenged students. Many many years of his life were wasted in our school.

    BTW very touching write up.

  31. Dijo: Welcome and thanks!

    Thank you for sharing. Parenting such kids is a tough task indeed. I sympathize with such parents and hope they gain the courage to deal successfully with their sick kids.

    You are so right – the obstinate wish to school them in a normal way led to so many years of his life wasted…

    I also know of the other side of the coin: children who are exceptionally intelligent. Even in such cases, normal schooling doesn’t work, in fact, it causes many problems. I know of a case in Pune where the parents of an exceptionally intelligent child were advised to admit their child to a different school, that specially dealt with such children. It was heartening to know that such schools also exist in India! 🙂

  32. That’s news. Never heard of schools like that. And thanks for the comments on my blog. You seem to be keen on building something of a community no?

  33. Mahendra,

    After our couple of interactions of Shefaly’s blog I thought I’d check out yours. This was the first link I clicked, a very moving and very disturbing story.

    It gave a whole new sense to the Pink Floyd album to the title of which you allude. I pulled it out and, since my turntable is not functional, just read the lyrics printed on that iconic jacket. More than thirty years since I acquired it, I discovered some new, unsettling meanings which, I hope will not cause me sleepless nights.

  34. Vivek,

    Welcome to my blog and thank you for your kind words.

    This interpretation of the lyrics has become quite a popular one. The ‘must be saying’ link at the end of my post will lead you to a site which is one of the most definitive interpretations of the Dark Side’s lyrics.

    If you discovered new meanings after more than thirty years, I feel very honored – but please don’t have sleepless nights! 🙂

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