Supporting loved ones- two encounters

Today a young duo came to meet me. The young girl had heard me in a college talk somewhere in a college in Delhi and the young man she brought along was her friend, going through a ‘tough’ spot. Just yesterday she had got in touch with me, by taking my number from her teacher who had facilitated my talk in their college. By chance I had time today, as I am also trying to take it a bit easy these last days of June- waiting to resolve my own back pain issues and in general having a low tempo on research in general.

She was insistent that the boy should meet me, rather than a psychologist or psychiatrist, because she knew that psychiatry cannot resolve the problems of growing up or coming of age or anything for that matter. She argued and debated with  

the boy’s family and pushed them into meeting me.  She was insistent that he ought not to go the psychiatric way. In the end however, she only came to meet me with him.

We spoke and I understood at least the initial roots of the suffering. I could see that he faced a certain mental blankness these days, which were not a part of his extroverted personality. They both insisted on that. And yet, the young woman was also insistent that instead of going to a psychiatrist they ought to come and meet me- for I may see something more into the scenario than a psychiatrist’s diagnosing sensibility. Which of course is not far from the truth- with patience I sit and listen to people, probing deeply sometimes and sometimes in a superficial manner, depending upon them.

Seeing her passion and commitment, I suddenly had tears in my eyes. Not because there was something extraordinary at work here only…but because I realized that how few such people would be whose loved ones, be it anyone- in the family or friends, would support them so passionately in a crisis – however big or small it be. Ordinarily the family would have taken him to a psychiatrist- as they had already been given a diagnosis of ‘clinical depression’ by a neurologist! (of all people). But this young lady’s insistence that no we will not go to a psychologist or psychiatrist- may make all the difference in her friend’s life.

Such few people would know that the ways out of depression are not medication but talking and building your lost sense of self and hope slowly. At critical moments having a supportive milieu can make all the difference- between disabling mental health conditions and recovering your self-hood.

That also brings me to the conversation I had yesterday with a young man who is going to be part of my research, hopefully. In talking about his family he said, that his parents let him go through his (psychotic) crisis, without pushing him into psychiatry’s arms entirely and he owes it to them that he could find his own bearings in the world. If only more parents and friends could understand that.

In a nutshell…

In distress there are many ways to deal with a situation. If we start looking at a psychiatric option, it usually overrides every other option and then people get into a net of medications,without any change in their situation significantly and a progressive deterioration.

The choice is with people how they want to see their loved ones- enabled or disabled and that is where the crux of the solution lies.The dominance of psychiatric discourse, which permeates society is another issue, and few can overcome that- while finding their path in a knowledge oriented way. It is difficult, arduous but worth the trouble.

 

The lie called CHEMICAL IMBALANCE

Perhaps you are aware of the chemical imbalance theory of psychiatry. Hear Peter Gotzche debunk it. I will keep writing more in later posts

 

Organized Big Pharma Crimes

Dr Gotzsche is doing some remarkable work, especially about the abuse of psychiatric drugs. I am posting two significant things here. One is a link to his personal blog and another is a video featuring him.

Here is the blog, and the video is embedded below. Reading his book has been a great experience for me personally, but for now I am not in a position to comment on it.

Valuing research informants

I was recently reading an article by Neely Myers titled, A Fragile Recovery in the United States, in the book, Our Most Troubling Madness. The book chapter is a storied account of how the researcher (who is an anthropologist working on her doctoral thesis) engages with the central character of the chapter, a woman she refers to as Meg, as Meg struggles to balance her life shunting between ‘shelters’ for the homeless and other such institutions, as well as comes to construct her mental illness identity as a ‘schizoaffective’. It is a queer, sad sort of a chapter in the beginning, because in receiving the diagnosis the woman is actually happy and relieved- because that makes her eligible for disability benefits. It is sad, touching and a stark reminder of the cruel world we live in , where our infirmities are the reason that society looks at us as worthy of support/charity, and not just because we are human.

It is also painful for me on another count- to read a researcher’s perspective. May be researchers are trained to be aloof from the subjects they study. But is it really possible? (In fact, if I recall now, she says that her brother also suffers from something identical). I am bothered a bit, because I don’t find myself so detached yet- I am actually attached to my research subjects- quite a bit. I don’t mean that I would go ga-ga over them, but i am concerned in their welfare, in wanting to tell them more- from things i study and read about, in case they want to know about recovery. I want to help them, wherever I can. May be I am stupid, or may be this is what survivor-research is all about- about holding others while you have crossed the stream yourself and not forgetting them completely, because in your crossing there is not a personal victory, but a social possibility that resides.

Like I read somewhere, the choice of what we study or research about itself is a bias- there is no objectivity here. We are humans and we choose as researchers what we want to study and how. That inherently has a bias in it, because we want to study what we want to study, not what is imposed on us by an educational institution- we are not following a syllabus, but constructing a pathway to study a phenomenon. Nobody tells us how to study it, nobody lays the path out. You create the path, you lay it down brick by brick and be sure about it, because someday at a later date you have to justify why you took the path, how you took it, what the bricks and mortar of the path are and how it leads you to your research question, or how it contributes to it.

And that brings me to the start of my research on a new platform-

Gathering Data

My research has two parts to it, one of which is to meet people who have been given a diagnosis of psychosis at some time in their lives, and interview them. This is the ‘data’ that I have to gather.

In these past few weeks I met two of my research participants (called informants)- both happened to be women, and by chance, both agreed to come to my home and talk to me. That was a quaint coincidence, which I don’t expect from anyone in future hereafter! And both these interviews happened in the same week- the last week of May. It was quite a thing- one came on a tuesday and the other on the Friday. Oh my goodness! there was so much to listen and write down. Naturally enough they had a lot to share as well- but on the whole it was a great time I had with both. Or let’s say we all had with one another.

The other connector was that both of these ladies were ‘recovered’ – if I may use a silly term. One has recently quit a university teaching assignment and the second is about to start a year long apprenticeship in a place faraway from home, after completing a master’s degree in something. They are both well on their ways in their own professional and personal lives. The latter is still on medication and the former left it years ago. Of course, both had a bipolar diagnosis- one got it in the US, while pursuing her doctoral research there. In other words, both are highly educated as well!

With families…

The other part of the data is meeting the families of the research informants. And I am trying to work that out, by taking appointments with these ladies’ families. The older, who is recovered is not a problem in this matter, because her parents are elderly now, and I can pretty much meet them soon anytime. But the younger one has some issues, having a working mother. When I hear a parent talk, I hear my own parents voice in them sometimes. I hear their fears and their concerns about their children. I so much want to tell them that, ‘look your child can also recover. Recovery is not such a difficult thing that it is reserved for a few.‘ But it takes time to get to that point, where you meet a family in person and let them talk out their fears, their suffering and their concerns. And yet, that happens all the time- not only in research, but even otherwise.

This part of the research design is turning out to be nightmarish. There are so many families that just do not want to talk about mental illness! Right while having people with mental illness diagnosis among them- what is going on in India is strange to say the least. Of course people who are diagnosed ‘ill’ have their own suffering, but what about the fact nobody wants to talk about it in each other’s presence? What is going on here? This is very strange, confusing and flummoxing. If there is a suffering, and it is a collective suffering of the family as a unit, why are people not willing to talk about it?

So, even while I ponder over the phenomenon (yes, it is beginning to look like one) there is an article looming in front of my eyes on the subject and am thinking of putting pen to paper.

But coming back to data collection, I realize also from Myers’ article, how as researchers we start valuing and engaging with our research informants. We want them to be happy, to succeed in their chosen vocations, to do well, to tide over their suffering. At least emancipatory researchers like me want that because our destinies are tied to the fate of society (does it sound too dramatic?!). We want that others would succeed in breaking the shackles that we have broken from the hegemonic clutches of biomedical ideas of human suffering- sold off as psychiatric diagnostic categories.

And in understanding the silence that is part of our cultural landscape, it becomes all the more a reason for me to value and cherish the presence of my research participants, because in their opening their stories to me, they are not only opening their hearts out, but also overcoming a great societal barrier- which they may not even know at present. But they are letting an ‘outsider’ in- someone who does not know their story, now does. And yet, they also understand that this ‘outsider’ is really an ‘insider’- someone who has known the road of suffering only too well herself.

Thank you dear informants. This is a knowledge making project and in you making your contribution we all learn something from our association- not me alone. Be assured of it.

As time rolls by, I will keep adding more blog posts about the data collection part of my work, depending upon time and inclination. Earlier i had planned to write one blog post per person that I met, but somehow it has not materialized till now. Let’s see if I can manage that ahead.

The struggle to find research informants is another story, and I really hope to write it down someday.

Social Defeat and the roots of Psychosis

For the last few days, whenever I can before closing my eyes for the day, I pick up this book called Our Most Troubling Madness, a fascinating collection of ethnographies from different parts of the world. It is a research in medical anthropology- with different researchers writing from different countries, including from India. My brother sent the book from the US, only earlier this month. The strange thing is that the theory that I am about to write about was taken from animal studies- in fact rats, and how they behave in newer scenarios and how bullying of newcomers can lead to a what is then called …

Social Defeat

A few years back I lived as a tenant in the house of a man in a village in South Goa, who was completely isolated from the society around him. In the one year that I saw him, I observed the effect of his social isolation and rejection by the world around him to be so powerful that it broke his spirit to the core. He died soon after. Social rejection is one of the cruelest things people can inflict on one another- no matter what the grounds be.

Yesterday I encountered the idea of social defeat- and how when people perceive it, as a loss of face among those they live with, it affects their sense of selfhood and self esteem. Then those among them who are vulnerable, become more prone to psychotic breakdowns. The theory of social defeat proposes that the experience of defeat in a  social context is felt, in the body that is vulnerable to psychosis, so profoundly that it can make the body ill with serious psychotic disorder…Social defeat is not the same phenomenon as symbolic violence or structural violence. Violence is a means. Defeat is an outcome.(p.198)

The writers were quoting about the rise of schizophrenia in Ireland during the 1970’s and how it was directly correlated to migration of successful people and that so many men who were left behind single, faced criticism and rejection from society, including their families, women and so forth. Ireland had the greatest number of men then, with a diagnosis of schizophrenia.

The idea of families isolating individuals and mounting criticism on them, being harsh, dominating and controlling of them, is very well known as a factor leading to schizophrenia. So now coupled with the new-found idea of social defeat, I think I have come across an interesting and compelling argument about how breakdowns happen or why.

This is just a small scribble to jot down a point that I want to refer back to. I cannot do this with every new idea, but I think I had to with this one. I am also concurrently reading the phd research of another researcher from Norway in the context of recovery and the manner in which she is framing her research is very nice indeed.

I am beginning my qualitative research- data collection this week. It is exciting and makes me nervous, because this is the real test for me- how I would arrive at the analysis later on. keeping fingers crossed.

Oh, and on a last note- I just spoke with a senior advocate of the High Court, someone who has been involved with disability and mental health laws in the courts. Interestingly enough she turned out to be living in the same part of the city as me, and invited me to come to her home to discuss whatever I wanted to, about mental health laws etc. I told her simply that as a social sciences based person I do not know how to read and interpret laws. She simply said, ‘don’t worry, now you will learn that.’ Meaning, I will help you! I was so grateful, and I said so. Just like the post I wrote earlier- when I need help I always ask for it and go all the way. What other way can we grow?

Pave the way or ask for directions?

alI am amused and surprised about the number of people who meet me and DO NOT ASK for directions. Of course nobody is an idiot to offer help without being asked for it! Certainly not me at 45 years!

Yes, meeting someone who is recovered is an encouragement to most and they see, in person, someone who has accomplished something difficult. Possibly it offers hope- but I am surprised about the ignorance of a large majority that does not ask me how I managed it or how indeed can they? Perhaps a large number of them want to pave the way for themselves, because repeatedly (in research literature) one reads that recovery is a very individualistic effort. NOTHING, indeed nothing, can be farther from the truth. Perhaps this notion is spread so that people do not talk to one another.

If diagnosis is made on the basis of certain shared attributes then recovery also would have certain aspects which would be visible in all individuals who accomplish a goal of recovery. Yes of course, everyone’s recovery is going to look different from another’s -but they all would look recovered.

That reminds me of a story from my life long ago. It was the cassette (those were cassette days, CDs not having arrived on the scene) release programme of my first musical album- Kahe Kabir, which in its final avatar became a four CD album, with 24 original songs by me. The cassettes were released by a senior musician, who was one of the brothers of a duo of classical musicians. In India there is a tradition, especially in the traditional art forms of touching the feet of the guru, or any senior person as a mark of respect to them and the tradition they represent. In the context of the tradition, Surinder Singh-ji, the musician who inaugurated my cassettes said that, ” As we grow older people automatically touch one’s feet to seek blessings. It does not mean that we have become all knowing. It simply means that we have walked the path ahead of you and as you join the path now, we have already made the journey, you would be making now. Therefore everyone consults their seniors as someone who are familiar with the road.”

So how does that fit in on a blog about recovery from mental illness? The same truth holds here- as the current writer being the person who has made the journey and is familiar with the road (of recovery from mental illness). No I am not asking anyone to touch my feet (in fact as a classical musician I forbid my students from it completely). It just needs a bit of recognition to see what I am saying here.

Let me illustrate with an example. Recently someone who is suffering (I think) approached me with a request to write a blog post for a blog they have started and could I please write my story on that? I thought about it for a moment.

In the early years of this decade, the first time I decided to write about myself, it was in a journal article- the length was approximately 5000 words. Then I wrote another piece/article, it was upwards of 7000, and another which was another 8000+ article, and then there was another smaller thing -possibly 1000-1500 words. A journal article easily takes a year to write because it is a very thorough piece of writing- going back and forth between the writer, editor, reviewers, proof readers etc many times. According to a senior academic known to me, a journal article is easily a three year thing. From the beginning to the end of the process, when you see the article in print- it takes that much time. I have myself seen articles going for two years, like a bone struck in your throat! Having done that much of writing about myself- I am quite tired to visiting my past so much, so many times and that too to analyze and sift out what part of it should be now talked about, which has not been talked about in the past. (all those articles may be downloaded from my research link on academia dot edu)

Irrespective of the outcome of the connection with this young person, whose intentions are honorable and praiseworthy where they are- I am NOT surprised they did not want to make the effort to take the long road I had suggested. I suggested why not read the articles I have already written and make a summary of them? Instead of asking me to write about myself, why not ask me about recovery? DO YOU NOT want to recover? Does being a mentally suffering person make you happy about yourself and your life? Would you not want a way out of it? (I did not ask the things in the purple font, but i had these in my mind)

So many university students read my articles and even write about them in their exams- for there is that much to be learned from them! They are not people who are necessarily suffering from any mood afflictions. A couple of years ago one student told me, ‘ma’am we have attempted one and a half question about you in our exams this time.’ I was so amused to hear that and I wondered what the framing of those questions could be like. These were masters’ students of Delhi University.

That is me talking to the MA class in psychology there

I have even heard a presentation about my own article in one college in Delhi University last year- it was funny and strange- because here was young student trying to represent me and my past, while I sat right in front. But the sharing that followed was so emotional after that, that in a class of nearly 20 students, at least 15 broke down for this or that reason. Obviously it was not an emotional moment in my life that moved them so, but their own lives which they were willing to examine in the light of mine. We were talking about disability and identity there.

An attitude of learning…

The point I am trying to make here is that people who are given diagnosis would rather NOT LEARN. Sadly enough the ones who are learning from such a one who has walked the road are university students. Of course everyone who is currently mentally ill and wants to recover (IF THEY WANT TO) can create their own recovery, in their own time- it may take two years or twenty, nobody can predict.

But would it not make sense to ask someone who has walked the road ahead of you? Had I known such a person when I was ill, I would have certainly asked them the path, because the path is not so simple, visible and clear that one can take it at one’s free will. And if you were to ever ask a psychiatrist they would deny that such a possibility even exists!

But then… I have an attitude of a learner, a seeker and I am willing to humble myself in front of someone who is learned. That is why I learned and continue learning, constantly seeking guidance from senior academics (who are often not my formal supervisors). And of  course one of the key reasons for my recovery was I trusted- I trusted many a person whose guidance I sought and followed their direction blindly, with faith and in surrender. My therapist said about me, that Prateeksha you were the only person who did everything I ever told you to, and read most of the books I gave. I didn’t actually, because I was so ill that I could not always read them But I made sure to make photocopies for days when the mind would be clearer enough to comprehend and that happened sooner than later.

That brings me to the concluding thought about a recent WhatsApp chat I had with someone who has a diagnosis as simple as OCD. According to people like me, OCD does not even qualify to be a mental illness. it is the sheer cruelty of pharma companies to morph that into a mental illness category and sell drugs in its name. Naturally enough nobody can recover- what can you recover FROM? There is no ‘illness’ anywhere in your body or mind. They told me that they have been taking medicines for the last 26 years. So my response was that if in this much time you are not healed and recovered, obviously something is NOT right about the path you have taken. You need to change course.

Even this person has known me from nearly 2012-13. But never once made an attempt to come and meet me, talk to me, trying to understand whether there could be a recovery angle to it. People keep doing more of the same, popping pills, writing about themselves and gathering more people around them in the name of their afflictions in the hope that it would help them pass their time and possibly meet more like themselves! (misery likes company?) I never ever joined any such group when I was on a road to recovery, for I cannot imagine even till date how it would help. I have always maintained that how would a diabetic benefit from another? So why would a schizophrenia patient benefit from meeting another? You are not your illness category after all. You are a person.

Ask, to save time

So my advice to anyone who is currently suffering is that if you meet someone who has taken a path that you would also like to take, don’t hesitate to ask them. It will only cut short your travel time. Otherwise of course if you would rather spend a lifetime searching the correct path, and where the slippery alleys are by no means can anyone stop you. It is your life, your time- you choose how you want to invest it.

Finally I think it is the attitude of a person which decides about who will recover. Learning, humility and openness are the keys that will open the gates of knowledge and challenge the darkness of ignorance.

‘Treatment’ for Bipolar

“my 19 years old older brother is suffering from bipolar disorder….we have already started his medication with psychiatrist…. …..mam can u suggest me some good treatment of this illness….“

Since I have been repeatedly receiving queries of this sort, from someone with a loved one with a bipolar diagnosis, I am writing this post as a response.

Please understand that according to psychiatry a person with a diagnosis of either schizophrenia or bipolar disorder requires lifelong medication. You will most likely never hear the word- cure, or recovery in India, from a psychiatrist.

I personally would not use the word cure either, because what can be ‘cured’ today can also recur tomorrow. Distress of the mind is like that. But isn’t the whole body identical. Just because you have overcome a toothache today, does not mean you will never have it again in another or the same tooth again. Life continues and we have to keep responding to whatever the changing situations bring. The important thing is that whatever we face, we need to increase our understanding and our knowledge about the subject. If you face a new subject, say like trigonometry or statistics, will you not make an effort at it? Similarly if you are suffering in your health and your spirits, you need to reach to the bottom of the issue- not just accept what a psychiatrist has to say about it.

In the advanced Western countries however this is not the case. The movement by those who have suffered at the hands of psychiatry has been very strong and robust, from the 1970s and a number of people are well organized into groups that support one another as well as work towards recovery alternatives. (This is also beginning to percolate towards low income countries like India, as the flow of knowledge is usually from the richer to the poorer countries). In its earliest phases the idea of recovery came from former patients who chose to get out of psychiatric systems and remained patients no longer. They began to be called as ex-patients or even psychiatric- survivors. But one must understand that in the advanced Western countries because of their advancement the level of psychiatrization of the population is quite high and people are often forcibly medicated, without their consent (naturally). That also happens in India I am now seeing.

Psychiatric Recovery

As survivors became more organized the mainstream psychiatry also adopted the idea of recovery from them. So now they also have their own version of ‘recovery’- which essentially means becoming functional in day-to-day life while living a life like any other person- return to the ordinary life. A large number of people keep taking psychiatric medication and yet have professions that pay their bills, enter into relationships and do everything else. They keep visiting their psychiatrists once in a while and yet function ‘normally’ – to the extent that even their spouses cannot make out that they are taking medication (if they have hidden it from their spouses in the first place!!).

Is there another version of Recovery

The other version of recovery actually resides in rejection of the psychiatric model and seeking out alternatives. Many people take the non-psychiatric path, find alternative medical systems, practitioners or practices (like yoga, pranayama, Zen, or anything according to their disposition). But a vast number of such people take the psychiatric route in the first instance ( I myself was on psychiatric medication for 18 uninterrupted years from November 1992-Nov 2010).

At a suitable point, with the consolidation of many resources people go off psychiatric medication. That usually does NOT happen with the assistance of a psychiatrist, because largely no psychiatrist is going to advise a patient to stop taking medicines- they derive their bread and butter from it after all. The greatest risk lies in going off psychiatric medication because these are chemicals that have been affecting your nervous system for so long that the body is now used to it.. Going off medication can happen slowly and by proper mediation of those who can assist a patient to go off medication- it would require support from many others including family.

What can be done when someone is newly diagnosed

I know and I can well imagine that getting a sudden diagnosis can be a very unsettling experience for anyone and the family concerned. Ordinarily one would not even know that such a thing or ‘illness’ exists and you would start poring over all resources to understand what the hell it is all about. The first resource you would naturally tap is the internet.

Now the internet is FULLLL of resources to befuddle the mind- confuse you and scare the life out of you. If you read article after article and millions of testimonies around, you will become more and more convinced that you are condemned to remain a patient for the rest of your life. I suggest keep reading but do not give up on ideas of recovery and the determination that someday you have to be well and get off medication as well. Unless you decide it for yourself, you can never ever recover. I have learnt this over time. I have seen countless families wanting their loved ones to recover (especially when they meet me it kindles a ray of hope that someone has recovered, and so can their loved one too). But the loved ones are so comfortable or resigned to the idea that they are ‘ill’ that they do not believe that recovery is possible and therefore are unwilling to make any effort in that direction!

Here is a potential roadmap-

• Take a deep breath and understand the implications of the diagnosis
• Take an alternative view- second opinion does not hurt. Do not tell the second person the first person’s diagnosis
• Life may be jeopardized for a short while, but don’t let it off the rails for long. Continue doing what you were doing. May be your efficiency would get affected and you will not perform as well as you could earlier, because medicines given to you would have side-effects. But don’t despair- continuity is more important at this moment. Giving up will be very damaging and have long term consequences.
• If you know alternative practitioners such as homeopaths, ayurvedacharyas or other medical systems, approach them and seek their guidance and interventions. The authentic people in these systems have very thorough knowledge about many things, and they do not adopt psychiatric diagnostic categories.
• Try to stabilize as much as possible, while you continue living your life- whether as a student, a working person or anything else. Take an off if necessary, but do not freeze- take heart. You will get a grip on it sooner than later.
• Once you achieve a certain level of stability- with your medicines and professional roles/goals, you have managed the first level of recovery- from the point of view of psychiatry.
• Now start looking for alternatives that can take you off the neuroleptics (psychiatric drugs).
• Seek counseling- this is the trickiest bit because finding a counselor/therapist who supports your decision to go off medication is going to be extremely DIFFFFFIIICULT. But the good news it that NOTHING IS IMPOSSIBLE. Keep your courage and keep moving slowly.
• Hopefully you will meet many others like me as well, who can support your process of recovery to the last bit. Or some counselor or a rare psychiatrist who will assist you gently (more likely in the West than in India though)

I hope you get some clarity from this. Stay connected with this blog and I will keep sharing further ideas about side-effects of medicines, further strategies for recovery and so forth. You can always consult me professionally or help/support Hansadhwani Foundation that supports me – so that I may offer my services for free. For right now, they are chargeable. We are a non-funded, non-profit and whatever we do, it is for the sheer love of sharing knowledge, & for people and a desire to assist them in their suffering.