Understanding our vulnerabilities toward achieving stability

I have a question for you if that’s ok. When you mean you recovered, do you mean you understood the root of your depressions and manic states, your bipolar disorder? Was there meaning, trauma in your life that led to that? And do you not suffer from that anymore? I hope these are ok questions to ask you. (E.L.)

My present blogpost is a response to this query from someone. I think it is befitting that I should answer to an earnest question in an honest manner. I am writing this post specifically so that I can share it with others and not have to make the effort again.

In response to the first question, whether I understood the roots of my depressions/mania- Yes indeed. As well as the triggers.

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This dog knows it can get attacked by its fellow dogs, and so it chooses to sit on someone’s wall and jump inside the house, if other dogs came after him. He knew he was vulnerable and kept the distance from the rest of the mongrels. Why not learn from animals?

What our triggers are – are our vulnerabilities. If one can isolate that it is a great victory and the best way to identify that would be a therapeutic dialogue with a therapist who is kind, wise and non-leading. It is not so easy to find such a person and that is the greatest challenge really.

Dear E. suffering is a part of our human destiny- but it does not have to annihilate us completely- we can live with it peacefully, we can make sense of it on a day-to- day basis and we can find better ways to make sense of things, alternative worldviews and conceptualizations.

Let me explain with an example. I currently suffer from a lot of spinal issues- which is quite painful. But I try to not let it affect me all the time in the day. yes some part of the day it certainly pins me down and when I lie down it just comes over me like a flood. I cannot even sit on the computer for any reasonable length of time that a doctoral reseracher would be expected to. And since spine is affected- so are my arms, legs and feet! I could be a ball of pain- but then I decided I cannot let it have the better of me. I cannot NOT do anything. 

SO, I am not going to compete with another phd candidate who can possibly study eight hours a day- but I will certainly try to do my two today and possibly a little more tomorrow, if tomorrow is not the same as today. This is how we build up our mental muscle- you don’t do it in a day. You do not become another person, you just learn to live with yourself a little more peacefully, more centered, greater equipoise. 

I hope you get the picture- if not please feel free to ask further.

(For those who read my blog with any regularity, pardon me I am not able to write however much I may want to thanks to the cold and my bone issues. But hopefully with summer coming soon, the months ahead would be better. Thank you for staying connected)

 

A good 24 years later

It was in November 1992 that I got a diagnosis of bipolar in disorder, and the calamity that followed had to be lived to know. I cannot imagine why depression should debilitate people, but I mostly think it is the diagnosis that does so. It freezes you to the point of stoniness- you cannot think there is life beyond the diagnosis. You just cave in, hopelessly, stoic and resigned, as though nothing at all in the world can change any longer and this is the final judgement on your intelligence, capability and achievements. When the whole world around seems to be joyfully straddling along, notwithstanding how much joy anyone is really experiencing, a depression diagnosis simply hollows you out from within. It does not stop, it keeps on doing it- hollowing you out. You waste away, and life passes by around in a haze as though you are watching it in a dream state.

However many times I would try to get well something or the other got me down and kept me so. Life passed by, friends passed by, careers never took off, people stopped believing in you, and the loss of face one experienced kept one automatically away from the world. With what face can you go and tell the world that you do not do anything of any consequence because you suffer from depressions.

At least today I know that even if depression are a part of life, they need not incapacitate someone permanently- people have a lot of strength in them, if they can develop the capacity for changing what is not working, to what could work. When relationships do not work, either we leave the relationship or recreate it. Remaining in an unhappy relationship with anyone- even with a job, or a partner, friend, birth family, neighbour or colleague makes a person anxious, troubled, irritable, withdrawn and perform far below one’s capacity.

Anyhow, long years did not bring changes- only more of the same. It was time for a change. I changed practically every aspect of my life, and it happened a great deal due to the entry of my dogs. Thereafter, a move to staying alone made me realize that a lot of my conflicts were due to family life- understanding oneself from the solitude of one’s existence offers the scope to question many assumptions we carry about ourselves. It was a great though tough experience to live alone from the time I was 35 years old, with four dogs, yet this leap was the pivot of change.

I turned on that axis of change to such a wide degree that I turned my life upside down or inside out, whichever sounds more realistic. In 2016 it would be 24 years that I had a first brush with bipolar. But today my life is not what it was then, or what it was at any time in the interim. Every step I took in these 24 years, with 18 years of drug dependence for bipolar, fortified my tenacity and willpower to deal with suffering- whether real or imaginary.

On 14th April 2016, I am starting PhD research in mental health and law, at Nalsar- it is a long journey at every step, even making it through the phd was not foreseen until a few months ago, due to certain issues of marks that I had during my MA years.

The reason for writing this post is nothing if not sharing with anyone who reads it that change is the nature of life and the universe. If you want to change anything about your life which is not working for you, you just got to be sure about it- life will give you chances from unexpected quarters. My experience of getting admission into the phd program is testimony that anything can happen to those who are standing in the queue. If you are sitting at home or sleeping away feeling disabled then you are the biggest impediment in your struggle.

If I, who had no hope whatsoever to do anything in life, can get into a phd program, I believe anyone who has a mental health issue can recover and reclaim their life. IT is my firm belief and conviction. And the sort of work that I do in counseling is ensuring that this is happening. Life is a big mystery and we all need to continuously reinvent ourselves, in response to the environment, our bodies, our minds and our resources. Change is ever ready to welcome us- and so should we be. Finally like the woodpecker in this picture, I pecked at it until it changed- whatever it was- fate, destiny, my life or my options.

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The greatest lessons usually come to me from nature, birds and animals

Caregiver’s stress or psychiatric emergency

On Saturday, the past week, a woman in her early forties, came with her mother and child to see me. The person who needed a counseling intervention was her mother, who came in with a deeply disturbed state of mind. I felt her inner fabric had been suddenly jolted due to a shock and catapulted her into a state from which she could not recover, with her own means.

According to the description of the daughter initially, and later corroborated by the mother herself, possibly two significant events in her life had lead to that. In the distant past, she had lost her spouse, in 2009, which possibly triggered off a grief which could not be duly addressed, or if it was it was not assimilated properly. However, the lady lived a fairly active life despite that, with one of her other daughters, in Bombay. In the recent past, the daughter who accompanied her to meet me, moved from Bombay to Goa, with her family, in response to her husband’s need for better work prospects. That set off another degree of anxiety in her heart, which remained unarticulated.

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All of a sudden the daughter became unwell (she had a bipolar diagnosis) due to adjustment stress in a new situation, whilst otherwise she had been quite stable for long years and off medication of any sort. The news of her daughter falling sick made the mother panic, and her anxiety took a turn for the worse- pushing her off the brink and rattling her fragile balance significantly.

When she came to meet me, for her daughter thought the next intervention required would be counseling/therapy, her discomfort and constant talk made me immediately decide that this was not someone who needed counseling support but immediate relief from her ‘symptoms’. The talk was ceaseless, she was frantic, tearful, anxious, repetitive, and kept saying that she would not take any medicine. The daughter was trying her level best to seek out any intervention that would work for her. I decided within five- seven minutes of listening to her that she would not have any effect of counseling, and requested her to take homeopathy, which she had been taking earlier as well.  But it had not been effective of late. I even referred my own doctor to them, lest their doctor have a limited repertoire, which is mostly the case with homeopathy. Before coming to meet me they had tried other ‘treatment’ options of reflexology, possibly reiki and other things.

I called up my doctor and also made her talk to him, and requested him to intervene, give a prescription which would be followed here in Goa. This is not something that we do frequently- because every doctor needs to meet their patients face-to-face. Doctor sa’ab was kind enough to relent, seeing the lady hysterical, and reporting lack of interest in anything in life, suicidal ideas, and several other indicators.

However , the catch in the whole picture was that she kept saying, that, if my daughter (indicating to the woman with her) comes back to Bombay I will be fine. This was a peculiar situation, because her deepest attachment seems to be with her daughter who is already married with a child of her own. The mother is so deeply attached to her, that it is almost like a parasitic attachment.

They stayed with me for over an hour, but since I had decided earlier, I did not put a bill on the exercise. What is the point of taking money when the recipient is not ready for what you have to offer- I cannot be a mercenary like a ‘professional’ if I remain untouched by human suffering, and focus just on the money that my practice can bring me. The more I thought about it, the more ethical I thought my decision was. Of course I could have told them to leave quickly, but considering they had come a long way, I just let them stay and talk about how to go about it and of course explaining to the daughter the medicines the doctor  had prescribed, since it was me who had spoken to him not her.

The Next Action

Today is Monday, and according to me today the whole routine would have fallen in place. However the daughter called me up today before noon and said her mother was refusing to take the medicines and had gone back to her earlier prescription of homeopathy. She reported a further hardening in the head and was unstoppable. I felt anguished to hear that. I had seen the mother to be a headstrong lady and I could see she was making it difficult for everyone around her to deal with the situation and only making it worse, in every possible way.

That brought to mind the last resort of psychiatry. I thought there was no option but to sedate her to calm her down. It is a very sad thing when I myself have to recommend psychiatric medication to anyone, because I try the best that nobody should be pushed into it. But if there is no alternative left and the person is adamant, what else can the family do? Her behavior must be causing a great deal of stress to her daughter also, poor girl, who was bravely facing it, both in front of her husband and in front of her mother- keeping a calm exterior.

I thought for the time being the best option was to anyhow medicate the lady and help her calm down. Over time when things stabilize and she has had some sleep due to sedation, possibly she would look for other ways to deal with her stresses and the triggers. For now her franticness would only make others spiral into the same. Her daughter said she was herself thinking of the same, as nothing else seemed to be working for now. In other words, the difficulty a family faces, pushes a person into forcible psychiatric intervention. The only trick is that at a suitable time the person has to be weaned away from psychiatric medication, because psychiatrists themselves will never prescribe it!

On that note we parted over the phone- me with a resignation that only when people are willing to get well and be compliant to recommendation of any sort, does an intervention work. Some people make difficult patients- they resist everything, for they know the better of it. I cannot but feel sorry when people have to be administered psychiatric medication, but I always hope that it would be a short term measure. Of course if the patient is complying, like me myself, homeopathy can work very well.

I do not see any recourse except for a devious manner of giving the medication or per force- which actually amounts to a human rights abuse. So that brings in the ethical dimension, as well as the dilemma- what could have been done alternatively? What can be done now? I am not sure today and I leave this post with this query.

Everyone will have a different response to this situation, but how does one decide. I do not know if they will come back to me, because they need not. But I will be around to support them in future, if they choose to. The mother certainly needs counseling to help her deal with the sense of loss that she is suffering from, and to help her focus on what is present in her life, rather than clinging on to adult children, who need to fly away from the nest, towards greener pastures.

I also hope that the daughter would not be unduly troubled by her mother’s suffering, as it creates a scope for her own suffering to surface once again.

On the last note, I am also wondering whether the mother’s suffering is not another face of the caregiver’s burden of looking after a child with bipolar and being tuned to her needs in an obsessive, fussing manner. But there is no way to find out about that, because I had no time to talk to them about their life together. Only this much could be ascertained within the scope that we had, once I felt it would not be proper to dig further into her psychic matrix. Whether this is an ’empty nest’ syndrome, a psychiatric emergency or another form of caregiver’s hyper-reaction to her daughter’s situation, piercing through her own frame, it is difficult to ascertain at this stage.

You are responsible for your recovery (from mental illness)

You will probably think I am unkind to even suggest this. But the truth is that nobody can bring change to your life, if you won’t. Just like no outsider can bring development in another country, nobody can bring progress to another group,  neither can anyone bring change in your life- even if they be your parents or anyone else close to you. You have to free yourself from the ghoul of mental illness. Be assured that others have trod the path, you are not alone.

The human mind is an interesting,  powerful device, and there is nothing that it cannot learn or unlearn. Even if there are behaviours that you have come to be  attached to, which you identify as inherent to your personality and sense of who you are, if they are not doing you good, you need to change them. Not because I am saying so- because getting rid of something that is not working for you, is only going to make you happier.

If you look all around the world, people who have overcome their severe disabling conditions are not weak people, who were attached to their disabled selves. They have taken their disabling conditions to be a part of their lives and lived lives accordingly, without being overwhelmed by disability forever. I am sure you would agree with me if I mention the names of Hellen Keller and Stephen Hawking. Perhaps on would think their disabilities have been big enough to incapacitate the average person’s mind into inaction. But that did not stop them. These are the role models one needs to look upto.

Trust me, I have always worked by looking up at role models- people whose stories I could see reflected in my own, and in whose struggles I felt I could find a resonance. I have found immense courage and will to survive by looking at others, especially those who suffer. Take heart and look at others. You will see more faces like mine, of those who have recovered.

Only when you believe that you too want to recover, will you take the next step – to plan how the recovery will happen. Recovery is always a slow process. You cannot be impatient about it, as you will have to muster many sorts of inner and outer resources, filter them over time to see what is working and what is not and remain consistently involved with them. I do not think anything can stop you from recovering. That is a promise from someone who has been there, done that.

However, before I conclude this little writing I must share with you, that nobody can recover without the support of outsiders of the circle. We cannot see where we are going wrong, or even if we can, we often do not know how to change it, because we are so accustomed to behaving in ways that we have always known. For that we need suitable others.

Since the mind is capable of learning and adapting, it can adapt to new behaviours. But what those behaviours could be, is not what we may know. That is where, counselors and therapists come in: to help you steer your path. If I did not have a therapist may be I would never have recovered myself. Whether or not I could be in regular counseling with her, whatever she advised me, I followed meticulously, because I valued her presence in my life immensely. Without outsiders we will make progress, but at a rate which may take decades to recover.

Choose sensibly therefore.

Why family support is NOT WORKING in mental health

This article can be downloaded from here, and is one of the resources offered by Antardhwanee. In this location, this article is titled, Families and Recovery.

In societies where social resources in health are limited, families play a crucial role in the illness and recovery of people. In mental health the case is even more so. For long periods, it is the family alone that bears the brunt of people’s illness and disabilities. Sometimes this may amount of a lifetime, and then the parents/siblings, who are the primary caregivers end up with the massive concern of who will look after their loved one[1], after their own demise.

Here is a brief list of findings, that research leads me to conclude, in the context of roles that families are playing, which ensure that people remain mentally ill, rather than recover and reintegrate back into society. This list is not exhaustive and as study is an ongoing process more thoughts will get added to this. Here are the beginning ideas.

Learning to be helpless together

Sometimes when one person is given a mental illness diagnosis, the whole family is paralyzed by a fear that mental illness has crept into their gene pool. They feel  extreme pressure due to the diagnosis and the social stigma associated with it. They all feel helpless about it and the infirmity or sense of loss that accompanies mental illness diagnosis of one person, in fact impacts everyone deeply. Secretly, they all start analyzing their own behaviours to see whether some traits of it are also lying within them!

In such a case if another member of the family faces anything of a similar nature, they are very quick to take action and take them for a ‘check up’ as well.

Protecting the loved one interminably

I have seen personally families being so defensive about their loved ones, that they keep protecting them from the world around. At times it amounts to the extreme case of hiding them from view, or not letting their loved one engage in any social milieu by themselves or without supervision. It aids in chocking both the people or set of people very severely, as no new ideas can come into the ecosystem, which does not interact with the outside world in any significant ways.

I have even seen another extreme, which surfaces in scenarios of marriage. I am not sure if this happens in India, but I have seen it here only. I have seen multiple families ‘hiding’ the mental illness diagnosis from the partners of their loved ones. As a result people are not able to remain truthful in relationships, and the trust that could be there between married partners never develops fully, because one partner knows they are not honest. This protectionism of the parents does not allow the partners to be one another’s greatest support systems, which marriage was traditionally meant to be.

Hero worshipping

Paradoxical as it may sound, I have found in many families that parents or siblings talk about their loved one, with a great fondness and regard, often attributing their mental illness to a ‘high IQ’, superior intelligence, artistic abilities or anything else like that. Though there are studies that have proved that mental illness is more positively linked to artistic creativity, the reverse is not true. Artistic creativity does not appear out of the blue, just because you are mentally ill and therefore your intelligence is also more than the average person.

By making their loved believe they are ‘smarter than the average’, families bestow them with a sense of entitlement, which means, just because they are more intelligent, they have a right to have moodiness, depressions, or any other attribute. This even inflates their ego and self belief that whatever they do or not do is well deserved, because now they are ‘mentally ill’.

I have seen in many cases that these loved ones, even when they come into counseling are so cocksure of themselves that they do not believe they will gain anything from counseling. They don’t. Their own intelligence is such a barrier, which their parents have created around them, that they are unable to use that intelligence for their own betterment by seeking help from anyone outside the circle.

Families ensure compliance to Medication

Since families have a great amount of faith in modern medicine they do not believe that psychiatry does not have a cure for mental illness. In fact, I would go to the extreme of saying that in families where parents or siblings are doctors or scientists, the possibility of anyone recovering from any serious mental illness is quite remote. Due to their unquestioning faith in modern medicine they keep medicating their loved ones, without ever probing into whether medicines are really bringing any tangible outcome.

Families may become human rights violators

Nobody ought to be coerced or forced into psychiatric treatment, especially electroconvulsive therapy (ECT). Families often believe doctors so blindly and rather innocently, that whatever the medical professional recommends is to be taken as a rule. ECT  is a very controversial procedure which has long term repercussions for a person. There is no need to administer ECT to anyone, but doctors do not educate families enough, who are anyways only too willing to follow what psychiatrists say.

Often people are given psychiatric medication against their will and in spite of having no need for it, even on the sly (by mixing in food for instance). Those with mental illnesses are not allowed to choose their treatments, because their families believe they cannot decide for themselves. As a result they keep medicating them and pushing them towards the edge, for the rest of their lives, till they reach their end! Sadly, the human rights violations in mental health are the most in any category of health, and the most part of it comes from families.

Fractured Communications

In  a whole lot of families people do not talk to one another- either properly or at all. As a result whatever support could come to all of them due to interpersonal communication, does not come about. Everyone lives in an emotionally marooned state, spiritually shrunk, cold, deeply fatigued, restless and wounded.

Even if one of them finds a solution to a problem, since their inherent communications are flawed, they are not able to convey that to others. In my own work I have seen many a family member, including people with a diagnosis, have been enthused to either meet me, encounter my work or hear about the sort of work we do. However, they have not been able to convince other members in their families due to a long term loss of trust, in one another and in the fact that any other ways could appear, leading them out of mental illnesses.

Not only in my case, but often due to lack of communications, people do not seek any other social mechanism to deal with mental illness, apart from free resources that the internet offers them.

[1] Throughout this writing I have used the phrase ‘loved one’ to refer to those who have been given a mental illness diagnosis, rather than calling them someone with a mental illness.

antardhwanee- one at a time, towards better mental health

It is a great challenge to work towards mental health of others and deal with the challenges of your daily life, which do not diminish just because you have recovered from mental illness. Life does not give you a respite- it gives you more and more…suffering, challenges and obstacles, with courage if you can muster it,  just because you have dealt with something serious in the past. I think most of the time I derive courage in my situations remembering how bad it was when I was totally depressed. Today when I encounter others in that state, I know from so much experience that they can also recover. The hope of recovery is what my counseling is all about, as of course the knowledge gained from decades of study and research.

It all began with research, because while researching in mental health, I realized a whole lot of things,which were not of a psychological nature at all, but of a social one, impacting mental health. By understanding my recovery more and more, I started gaining insights into how more become ill and can become well. That is the USP I have in counseling.

 Life begins on wasteland

Anyhow, this blog post is to share the work that I had started long back, but is now in the domain of the public, to offer my services in counseling. I am relieved and hopeful that more will recover, also with some of the insights that would emerge in the counseling process.

Here is the website– and I am happy that I have at last gained the clarity to bring all my mental health ideas, concerns, and research into one pool. Onward from here. This is the page we maintain on facebook about the same.

Self talk, and embracing the enlarged Self

The purpose about communication about one’s own self can only be towards enlarging the scope of possibilities of human endeavour, hope and courage. So though I usually do not like to speak about myself, unless the reason be very compelling, I did accept an invitation to talk about myself for once, in a detailed manner in the Department of Psychology, at the Delhi University, on 4th Sep, 2015, at the behest of a professor, who has been a collaborator on many issues of mutual interest in the past as well.

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Dr. Suneet Varma, is to the extreme left in the picture here

Dr. Suneet Varma carries out the tough act of introducing the new paradigm of Indian Psychology to his graduate students and as part of that exposes many a scholar, practitioner and academic to students to drive home the point of the various threads that contribute towards the ethos of India’s myriad cultural, artistic, spiritual, aesthetic and philosophical traditions. In that context, he has exposed his students to many aspects of Indian music as well, particularly those strands that interest him deeply. My interest with him coincides on the page of Kabir. My article about Kumar Gandharva is also something that he has shared with his students in the past.

When I shared with Suneet, about my article – Making Song, Making Sanity, being purely in the context of Kabir, he was interested in having me come and talk to his students. I took up the option, even though it meant talking about myself, which I find extremely difficult, because of my shy nature. No, do not get me wrong– I am not shy the way one would think the ‘shy’ word- I am shy to talk about myself (a great irony in the times we live in). That is it! The paradox is that my own life has many a hint for many to think about in the context of illness and recovery, or in fact human capability. On the other extreme, in research I have frequently written about myself, which is a very difficult thing to do. But I cannot explain the complex thought behind that is this blog post- it would take a full research article, about my motives.IMG_2435

Illness of the spirit is not an ordinary somatic illness, because everyone’s spirit can be troubled, just like Arjun was in the midst of the Mahabharata. The troubled Arjun can remain troubled until a discerning Self in the form of Krishna does not appear. Krishna is actually the ‘Viveka’ in the human, that awakens by complex ways. I cannot go into details here. The journey of what is classified as mental illness is something that I see as the search for an authentic self- the self that cannot connect with the falsities and facades of modern living. Various people reject the world around for various ways in the which they do not sync with the possibilities inherent in the experience of daily living. To come to the point of a ‘breakdown’ is a real amplification of those incongruous situations and the rupture of the psychic fabric.

Of course it is another thing to experience, what students in Psychology would understand as PEAK EXPERIENCES, and another thing to be able to harness the waking power of the sleeping serpent- that is where madness emanates. Naturally life is too short to explain all that I have understood in journal articles and I have no use for any further academic writing. But yes, there is a need to write about the consciousness and how it originates and how it diversifies and whether it really achieves the dimension of the transpersonal or whether it is only a theoretical possibility.

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So I gave a talk in the department, which was received with an unprecedented appreciation, for me. I have spoken about myself in guarded ways, in the past as well- particular in conferences. The prime reason for my shyness does not stem so much from the stigma of mental illness, as much as it does from the self-centred, attention seeking attitude with which those who share  illness narratives, often end up representing themselves with.

For me, there is no self that remains to be represented, if not the past self of an immature mind, that goes through a process of maturation, by its dive into the IMG_2416underworld of its unconscious and by integrating knowledge both from the personal to the collective human history, which lies in each of us as the collective unconscious, emerges from the experience a tired, centered being- no longer dazzled  by anything at all in the world, not interested in any trappings of scholarship, spirituality or a desire to attract attention. It is just like coming home to oneself- there is no one there, but silence- and all noise is outside now. And yet we have to constantly guard against the outside noise, which is only too close and will catch one unsuspecting.

But I am happy and surprised to note, that though my narration of my past was to a group of young women and men, who were perhaps on an identical inquiry in their own ways, with the tools that they have at their age, the response I got from this lot of young people is by far quite unusual, for it brings to mind another interaction of another nature, whose context was directly mental health. That was in the Ambedkar University, and a panel discussion on the subject of mental illness- in which a number of people were invited to be part of the panel, including me. The year was 2013. However, the response I got from the students there, who would perhaps be directly dealing with the subject of mental health, was markedly lukewarm as compared to this experience of Suneet’s students.

Even in the past many students have filled their seminar room, including having more senior professors too hearing me talk, but this time the students lingered on IMG_2464much longer, after the talk got over. Not just a couple of them, but many actually. This is surprising, and made me self reflect what was the reason? Is it because they are hearing a self narrative of recovery? Is it because it gives them hope and courage to deal with whatever they are dealing with at present? Do they see a possibility out of mental illnesses for others as well? There are questions galore in my mind too, as to why the story of one person interests another.

However, the reason for this post is partially to note the experience and partially to invite the young women and men to comment about what was it really that they felt connected to, which they can openly articulate for everyone to read. So this blog post will go to all the students, with a request for their footprints here, and their thoughts, reflections and insights. That may give me the scope to look for further possibilities to connect with them, via another talk/lecture/workshop or collaborative research- the way I had initially mooted about the ‘musical self’ but which the time constraint did not permit an articulation of.

The young man who has taken these pictures, was astute enough to note that if someone can overcome something as difficult as a mental illness, then possibly overcoming the struggle of doing a master’s degree would not be so bad! Well, they do not even occur on the same page Rishi. And on the last note, knowledge which is gained from universities is just an introduction, which is no substitute for lived experience based knowledge. Perhaps you would agree as also several of your friends understand.

IMG_2355Thank you my dears, for helping me deal with the hesitation of self narration, so that though I have attained a certain level of triumph over my past self that suffered so much, I still have to move myself towards a larger self, in which I am not hindered by what others conceive of me, upon hearing about a past of mental illness. Your feedback, appreciation and generous ideas certainly give me hope and courage that the youth are not impervious, indifferent people but sensitive and looking for authentic encounters- to express their own authentic selves.

I invite your comments and the same ideas or new ones, on this blog post, to save it for all our future references. Thanks to Rishi for the efforts, as of course we all must thank your department, and Suneet in particular. Eric there is a lot of Jung in me, so perhaps the next collaboration could be with you ?!! 🙂

Ah yes, I muIMG_2366st mention how difficult it is to talk and sing at the same time, to illustrate some of the ideas that I am discussing, but I try not to fight shy of the challenge. The voice from talking, becomes tired and is then made to flip over to the singing side. I hope to master this challenge, if someone can! IN any case, I seem to be doing this quite a bit, in talking on the subject of music all over the scope of my work.

I could add here that the title of this post is a trifle misleading, because ‘self talk’ is what happens inside a person’s mind and not in the public domain. But when the inner self talk, which arises due to a disturbed state of mind is more or less over, then the talk about the ‘self’ which is not an individual but universal self is what the post title could be seen to imply. Self is not the focus, but the SELF, which is common to the whole of humanity and its awareness- that is the intent.

This post has an unusually large number of photographs because the photographer was generous enough to not only shoot many, but also send them to me. Thank you for that.

The suffering of family caregivers- WHO AFTER ME…

‘Who after me’- is a question which every parent whose child faces a disabling condition, which requires their care-giving, support and engagement, has to deal with. There are many ways to look at this question- to look at the individual side of the question, or look at the social side of the question. Since one cannot but act only at a small level in the short run, I will begin by answering this question at an individual level.

Personal history

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In fact, let me begin my question with myself. When I was extremely ill, my parents handled my full-fledged responsibility; I lived in their home, and they went to teach in their respective institutions (in Delhi University, both of them), while my grandmother and one dog was the remaining family. I was completely incapacitated, would not get up till 10:30 or even 11:00 in the morning on certain days. The depressions were so huge that life was completely unlivable. But whenever the skies would clear up, I would pick up my pieces and start mending the frame somewhere- I mean the frame of my existence.

One thing was clear- my siblings were both in the US, and had lives of their own, and I, the oldest, was with my parents, who both went to work. In other words, at the prime of my life, in my 20’s and 30’s I was sitting at home doing nothing, but some study, some reading, writing and singing. I could not imagine that my parents would keep on working and I would just spend the rest of my life that way. I was troubled, useless to myself and the world around and there was nothing I could do, would do or go meet anyone. (whatever exceptions were there in music or writing happened on days which were not so bad). There were no friends from any dimension- school, college or neighbourhood, no relatives who knew anything or if they did, they pretended to act ignorant, and there was nothing but a great spiritual stagnation.

At a very critical age of my life- at 35, I decided I could not live the life of my parents, I had to figure out my own. What would happen when they would not be around any more? I would have no skills to deal with anything. I would have no income of my own, no friends, no relatives to fall back on, nothing at all…where would I go and what would I do? So that brings me to the question of this post- the question that all parents face, whose children are incapacitated from doing the day-to-day actions of living and participating in life in ways what gives them hope , courage and happiness.

When I got well, whose story is written elsewhere in research, the one thing that progressively became important for me was to see whether this recovery was a chance or random act, or was it happening among others too and what pathways they were adopting to get there. This has been the general direction of my research as well- towards recovery solutions. So if I just come back to the first question, one has to see whether someone like me can act at an individual level or a social level.

At the individual level, one can engage with one person, nay one family at a time, help them comprehend distress, help them rehabilitate and recover the manner I have done myself or now hold many other hands- towards recovery solutions. I do not think people cannot recover- no matter what span of time they have been ‘ill’. But it is just like saying that someone who has been used to walking with crutches will now learn to run. So how to bring the turnaround and who will bell the cat- the suffering? Before they drop their crutches, they have to gain courage that they can indeed walk, that their limbs have strength and they will not tumble, just because they will let go of the crutch, which they have been depending upon for so long. (the crutch metaphor is only a metaphor, no intention to allude to another ‘disability’)

What can one person do?

I am very clear in my mind , that I cannot bring social change- that is for the government to accomplish for they alone have that many resources that they can empower, employ, and rehabilitate hundreds of people. However, that does not mean I cannot do anything at all. I, or anyone like me, can only deal with one person at at time. There are many people who create organizations in the hope that they can mediate with the government and bring in more interventions at a macro level which can transform society. Often a lot of times, these people have no model by which they want the change to come about. I do, because I AM THE CHANGE MYSELF, not just the change-maker, or someone fighting for change, without a concrete plan of action.

I believe that people can recover. Needless to say, I have seen them recover, both from bipolar and schizophrenia; I need not delve into other things of a less distressing nature, not that they do not make life difficult in any way. The only thing we can do is then from this prototype of recovery, to create more recovery outcomes. If recovery could be accomplished by the government then perhaps the whole country would have healed by now, and there would have been no problems.

Maybe some people have hope in the government and its systems, I do not. I think it is only up to me to do what I can and bring all resources I can, to reach out to the widest number of people- both families and individuals to let them know, first of all, that recovery happens all the time, many recover, and it happens all around the world- not just in resource rich countries.

The concern of parents that comes from the WHO AFTER ME question is a reflection of the unending suffering of both parents and their children who have become permanently dependent, thanks to a system of continued infirmity. I know one thing for sure, that if one remains dependent upon psychiatric medication, nobody can recover. Yes, you will most certainly become functional in many domains of life, but independent living, and handling life stresses- that can never happen. Each one of us (including John Nash) who recovers, anywhere, has gone off psychiatric medication at some or another stage of their life, by creating alternative resources, no matter what. So who after me, is a confirmation that the path of rehabilitation that they have followed has actually disabled their child, and made him/her permanently dependent, rather than making them recover any aspect of their lives.

A few months back, I was talking to Dr. K.S. Jacob of the CMC, Vellore on the subject of continued medication, and he brought a startling insight to my notice- that only one- third patients require long term medication. I was so shocked to hear that, because in my 18 years of psychiatric dependence, my psychiatrist NEVER EVER told me that I could go off psychiatric medication, no matter how many times I would implore him to help me reduce the drugs. Certainly he brought them down to a minimum, but no way he would say I could go off them. I would have to continue them for the rest of my life, what did it matter?

What did it matter to him that I had co-morbid conditions and I had gained so much weight that it contributed to a lack of self esteem and self worth? The mental fog that would waft through my brain at all times, never would lift for me to face any day of the year, any festival, any change of season with any ray of hope in my heart? I was just a patient who was a regular nuisance, because she would come and request a reduction in medication all the time.

Today when I look at my own recovery I am grateful to my parents that they let me make some important decisions of my life, including the choice to live alone, including the choice to come back home when one marriage did not work or more. I am grateful to my mother who never told me to take psychiatric medications, because she was quite open to other alternatives. In fact it was she who would regularly encourage me to try out new things and even eat them herself to offer me solidarity- one of them being the bitter leaf of ashwagandha that grew wild in my then home in Faridabad. Ashwagandha is known to be a mood stabilizer, and she would try getting me many sorts of ayurvedic pills and potions, or stand with me in queues of this or that vaidya.

I think one of the key people in my recovery are my parents, and they have always supported me in my choices, no matter how difficult they be. When I see other parents on the one hand I understand their suffering, on the other hand I see how they become the chief mechanism through which their children get medication for years and years on psychiatric drugs- for they never have the courage to look for alternatives. But like I said about mine, though they are the KEY PEOPLE, they are not the reasons for my recovery ALONE, in fact not in any significant way- if I did not have the scope to express myself through other means.

That is the sort of alternatives I am trying to bring together towards the recovery programs we are designing at Hamsadhwani- mostly for people suffering, but in one exceptional case- for parents too- The Caregivers’ Online Program, as part of which parents will not only get to meet many people who have recovered from serious mental illnesses but live lives just like anyone they know. Needless to say, psychiatrists who have a recovery orientation are part of the contributing experts as well as professors who have worked in clinical psychology and health psychology, activists who routinely meet and deal with people having mental illnesses.

Naturally enough all of us who work in mental health, regularly meet people- I also meet families due to my orientation towards family therapy, are more exposed to mental illness stories of people than parents who only know their one or two children or a few friends’ children with identical stories. It is only by exposure to new ideas can new solutions be found- for by now everyone knows that psychiatric medication can only go so far. We cannot solve the problems that we have created by the same thinking that created them (Albert Einstein). As Anil Vartak, the vice president of the Schizophrenia Awareness Association says, that solutions for mental illnesses can only come if those who have recovered actively set out to help more recover. That is also my effort via this program and that is why I have also roped him in.

Parents will have to continue worrying about their children permanently if their caregiving is so dependence-creating that they cannot enable their children to become functional, and self preserving. Instead of working on the deficit side of their children, if they can help them deal with their mental distress in ways that their existing strengths and abilities are only further consolidated, their worry about WHO AFTER ME, will never be a worry again, because after them, their children will be well enough to manage their own lives.

For that outcome to emerge they have to put their children in front, as agents of change in their own lives, and allow them to make mistakes and grow, rather than determine the direction of their growth all the time, proactively run around here and there looking for solutions and meeting all sorts of experts, all over the world.

ON a last note, I just remembered that my mother was a very active and valiant parent when we were growing up as children. She would actively fight against issues in the parent- teachers’ association in school and at another level in the politics of the teachers of Delhi University, among other things, such as women’s issues. However, I thank god that she never took up these roles in mental health, choosing instead to focus on me as the sole concern. In getting her priorities different from parents who created organizations to fight for the whole society, she created the scope for me to recover and possibly bring that knowledge to others, rather than keep debating with the government for more measures to deal with mental health. She did not have any hope from the government too, I reckon. No surprises, I am indeed her daughter.

Of course this is not to say that those who took these paths do not deserve recognition for it. I am certain in their own ways they may have contributed to some social outcomes, but has it also brought about a recovery in their own children’s lives? That is the key issue. If they have succeeded in that, then they may have a path to show to the rest of the parents, or else, it is we who have recovered, who have dedicated our lives and our youth, our homes and our families to the suffering of humanity need to take care of this responsibility.

And this is where I stand too.

Caregivers can change outcomes in mental illnesses

Having seen the outcomes of many recovery stories and even non-recovery ones, the one thing that becomes clear is that if assisted positively and non-intrusively, many people can recover even from serious mental illnesses.

So why does it not happen more often? The one likely thing that comes to mind is that mental illness triggers off due to some contribution from the family environments- like it or not. Perhaps this is the most difficult idea to digest.  But if we can stomach it, and be willing to reflect upon what they could have done or wrongly so, then many things can change.

With this in mind, I work in therapy with people- I mean families, and with the same idea, I decided I ought to reach out to a wider number of people. But instead of choosing to keep the knowledge offered as part of the course, only a function of my own knowledge, why not spread the net wider and bring in many others, who have been working in mental health with a similar or same commitment as me, and trying to diminish the burden of human suffering, wherever possible.

With this idea as a background I decided to do two things- first of all create a framework of ideas and then a resource base of ‘experts’. Honestly speaking, perhaps neither of these ‘experts’ would claim themselves to be as such, and this is not to judge their knowledge and represent it in the same way as the positivist tradition does- for measuring expertise by degrees and professions. My only basis for classifying them as ‘experts’ is the number of years they have been working in the field and the orientation they carry- recovery and rehabilitation from mental illnesses.

As yet this orientation has not gained salience in India, unlike some Western countries- and therefore these people have not been seen as such either. But I hope with this course now in the public domain, more people will recognize the reality that mental illnesses can be a thing of the past, if more people take heart, families change their attitudes and supportive behaviours. This is one of the key advantages of being in relatively poorer countries- that our family systems are quite intact. So why not assist them in augmenting what is already present, rather than aping Western models and walk towards our own annihilation via their pharma enterprises.

Here is the first Caregivers’ Online Course, that I have been referring to as part of this blog post. And I feel relieved at last to have come to this clearing- there is so much water under the bridge, from making the website, to getting the experts to collaborate, structure, and now the next challenge- to ensure its viability and efficacy.