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.

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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.

Therapy is not common sense- trust me

If everything could be achieved by common sense communication, then people would easily learn a few skills and resolve all their problems. But that rarely happens.  A vast array of problems start from communications, but to solve those problems we cannot often fall back on our own communication skills or abilities only.

People, particularly in India, often have a mistaken notion that someone who is therapist/counselor is talking from common sense and giving advice based on their intelligence. Yes, I agree, it seems like that, but reality is that is never the case. Let me start by saying that whoever has whatever level of intelligence, they have reached there in a complex distillation of ideas, study, immersion and of course years of work in the field.

I am giving this prelude to a recent encounter with a family that I want to talk about. It was the brother who approached me through a social network, upon seeing my work in mental health in some way. He asked me a few things and over time that set the ball rolling. His concern was for his older sister, a woman in her early thirties, who had been given a diagnosis of schizophrenia. In due course when I traveled to Delhi, they came nearly 300 kms to meet me, all the way from UP.

The woman, let us call her Sarita, came energetically and seemed charged with ideas, and full of enthusiasm and verve. I could see she was excited, and ‘high’ in some way. I would not want to see this ‘high’ as a psychotic high but there was a case of being sure of one’s self, and a bit of grandiosity- what would be seen as the classical ‘symptoms’ of a disturbance in the psychological wellbeing of a person. However, I never want to look at people through the lens of pathology or illness and therefore despite seeing the ‘symptoms’, which were truly subtle, I noticed her emotional fragility, anger and inner disturbance. After all I am not a peer for nothing, if I cannot discern how subtle the emotional fabric is.

At the end of the dialogue, which lasted a good two hours, I figured that the young lady had come to take a clean chit from me, that she did not have a mental illness and therefore did not require medication. Of course, I do not believe that anyone requires medication. But to move away from that stage where you do not have to take medication, you have to be cognizant  enough to move into the behavioural domain. I mean to say, that certain behaviours of those who are classified ‘mentally ill’ is ‘not normal’ by the standards of those around them. That is why they are taken to a professional- psychiatrist, therapist or counselor, or any other doctor.

Each one of these professionals acts in accordance with their  training. A psychiatrist believes that the ‘symptoms’ are due to a chemical imbalance and if the proper chemical is given, the person will become ‘normal’ or ‘fine’. Psychologists come with various kinds of training but they are mostly informed by the same set of principles as psychiatrists, especially those who go through clinical psychology courses.

I have a diploma in counseling. But more significantly also a lived- illness/recovery experience, to fall back on.  I fall back on my lived experience based knowledge pretty regularly to understand the suffering of others. People, like me, often work in the domain of social psychology and self experience puts my knowledge at an altogether different level. I am not arrogant about it, but trying to capture the difference. Just imagine a dentist who has never known a toothache. How can they understand the pain of a patient? Contrast that with a dentist who has had dental caries, been through root canal treatment, got a tooth extracted in teenage and has two cavities. How much more the latter would know about the suffering of their patient?

The Story I was referring to…

Coming back to Sarita’s story. After one set of dialogues the duo went back. There was a lot of friction with the father and that seemed to be a dominant motif that emerged. The younger brother played the balancing role in the family. Sarita was happy that I was willing to look at her beyond the psychiatric label of schizophrenia. After that assurance, she was sure that she did not need any medication, which in any case, she had been flushing down the commode.

A few days later, she befriended me on the social network, and I noticed a sudden spike in her activity. In a way Facebook serves me very well, especially for watching what is going on in the lives of those I counsel or generally engage with, because it warns me if something is going wrong. (I recently also caught another friend getting into the spiral of PTSD, and warned her, told her to go to sleep calmly for a few days. It seems she tided over that. She her admitted to all the ‘symptoms’ that I had seen, which made me raise the question with her in the first place). I found her trailing me on every forum and posting her own posts there, by joining a whole lot of fora where I was involved. I found this a very unusual behaviour and I asked her brother, if everything was ok.

He informed me that things were not good and Sarita was too excited about a certain new thing in her life. She was going on talking about it to everyone, in a manner which raised suspicion about her. I told him, to tell her to talk to me, if she would like to. She did, through a facebook or WhatsApp message! In what way can a professional help a client via a message?

Few days later, on the occasion of the World Mental Health Day, I sent a message to her brother again, hoping all was well. It wasn’t. Sarita was clearly ‘high’ by now and aggressive, offensive and charging her family, particularly father, with all sorts of things. All my exchange happened with the younger brother alone, via messages only. When it seemed she would not be interested in counseling, I told him to seek recourse to psychiatry, which I inevitably know, would forcefully drug her, sedate her and possibly give her ECT. I shudder to think of that!

The brother understood what the way out was, since the sister was unwilling to talk to me, or seek any insights into her life, or have any other way, but her own. She left a job that I had encouraged her brother to help her hold on to, because she wanted to float her own entrepreneurial venture. I told him how to win her over take up the government job, as she was adamant, that it was beneath her dignity to do so.

Upon my recommendation, the brother took her to the psychiatrist and sure enough, the forcible drugging, the sedation and the ECTs followed suit. Families will never know how they become the chief arm of psychiatric coercion and the biggest reason why people become permanently disable due to mental health conditions, that they can easily recover from. What could I have done in this case, even if the brother trusted me completely to guide them? If the person who needs to talk to me, and understand the situation does not understand it herself, what recourse can the family take?

My advice to any family would come from two options. One is the biomedical way, which is often forcible and therapy/counseling. The latter is difficult, and requires patience. No matter what medication they take, if you do not want to incapacitate your loved one for the rest of their life, they will have to seek therapeutic guidance and support, to deal with their situation/s. If you forcibly medicate them or give them ECT (which should be made illegal immediately), you are actually infringing on their human rights. Yes, you got it right- it is a human rights violation, which you are committing within your own home, with your own loved one. Sorry to say that, if it hurts your sense of justice, but I cannot fool you or me about this.

How could therapeutic work have proceeded after the first meeting with Sarita?

Ideally the first meeting is where anyone assesses a situation. You hear the two points of view or sometimes even one person, if they have come alone. First meeting or even a few meetings should be the ground that people have to understand one another. Entering into therapy is entering into a relationship and both people need to know another. Would you not like to know who your therapist is after all?

In family counseling it is always better to listen to everyone and talk to everyone concerned, because ultimately everyone in the family is impacted by one person’s condition, whatever it is. Narrative therapy goes even a step further to include even the next level of people, and open dialogues mean involving even the kinsmen!

In the subsequent meetings, one sets an agenda for action and a modus operandi. No therapy work cannot get over in one, two or three meetings. Often it takes many a meeting with clients, for someone to truly understand where the roots of suffering lie in their life.

In Sarita’s case, this could have happened-

  1. Sarita could stay in touch with me and talk to me, not more than once in two-three weeks. That would really help us understand what is going on in her life, which causes her frustrations and anguish, and which periodically boils up as temper tantrums and then accusations against her parents.
  2. The way to deal with any behavioural issue is to address the behaviour directly. I increasingly prefer to bring families into dialogues early, so that whatever we are talking with one person, could be known to others who would help in accomplishing the goals of that one person. Often family communications are deeply fractious due to forcible handling of psychiatric crises. Families need help with talking to one another gently, without causing further rifts.
  3. Ultimately, it is Sarita’s journey towards her individuation and she needs to understand that whatever expressions she has to express her anger, frustration and moods is not working with others around. She would have to develop a more reasonable and non-threatening communication which does not make her family and herself a social nuisance and laughing stock. Part of the anguish of her brother stems from this responsibility towards his parents and neighbours.
  4. Any journey towards finding one’s balance takes time. Most will not even attempt it in their lifetime. Only the ones who are deeply fractured seem the most appropriate ones to require a therapeutic dialogue. In reality everyone needs help, support and guidance.
  5. Equally as much as Sarita, her family needs the support, help and collaboration. That is why family therapy is the need of the hour, not individual therapy.
  6. Assuming that a client like Sarita would speak with me once a month, it will easily take her between two -three years to understand her issues in a more clear way. Though it may seem a lot, but what is two/three years compared to a life of psychiatric medication and who knows how much disability due to them? I must add here, that every meeting between a therapist and their client, has long term effects. So though once a month may seem very small a time, in reality it has a long lasting effect, almost like a butterfly effect, which touches many chords in their lives.
  7. In family therapy literature, it is said that within 20 sessions, most outcomes of a long term nature, would emerge. I agree with this. (In due course if we can create reflecting teams, that would be even more empowering and faster). 20 sessions can happen over a couple of years…is that not truly remarkable? I am not sure India is ready for it yet! Sad, but this is what I am seeing from multiple families.

What follows are some general ideas about therapy-

  1. Till those who are given mental illness diagnosis do not feel the need to seek help to change their outcomes, no change can happen with a dialogue between any member of their family and a counselor, like me. I have seen many a person in a family wanting to bring their loved ones for counseling, but find that they do not have enough trust between one another, to accomplish that!  It is truly sad for them.
  2. Therapy is not a day long affair. It is a reflection on our lives and how we have come a long way, with our behaviours. Therapy does not mean I am a therapist and you are a patient. Therapy is your attempt to heal yourself through dialogue and understanding that emerges from it, by learning to look at your life in a more balanced, philosophical and calmer way.
  3. Therapy means someone is helping you change your behaviour and assisting you become what you always wanted to- by holding your hand, while you gain that wisdom. It is not about guiding you at all. It is about letting you become the expert in your own life. But until you want to change your behaviour, nothing about your life can ever change.

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

see

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.

What is important about Nash’s story, for families around the world

Yesterday I got a message from a young man, a part of which was- My whole life is put at stake. My parents are planning for divorce, all due to this paranoia and papa’s stubbornness. I was thinking to get some legal help but I think that will also be like going too hard for him.

Symptoms of distress that manifest as paranoia, hallucinations, delusions, or anything else are extremely taxing for families to deal with, and this message was written by a young man in his early twenties to me, as he desperately tries to hold the family together, in the hope that somehow they would jointly tide over the struggles of one person, and support him. however, the ‘papa’ is adamant both about treatment of any sort- medical, dialogic or anything else. He has a confirmed diagnosis- yet there is no way anyone can have a reasonable situation with him.

John Nash

This brings me to the context of Nash’s story, dramatized for the world by the award winning film, A beautiful mind. What needs to be remembered about him is that notwithstanding his schizophrenia diagnosis, for which he was medicated for 25 years, he actually stopped his medication in 1970– and that is never brought out easily. His wife divorced him once, but married him again, at a later date. She played an important role and as someone said in a recent article that I read, she appealed to his emotional side, rather than his logical/mathematical brain.

I quote from the same article, as follows, while the whole article can be read from the link above, in blue-green.

Family and schizophrenia

Frieda Fromm-Reichmann was a psychoanalyst of German descent, who was forced into exile by Nazism and worked in the USA from 1935. At the end of the 1940s she presented a theory that schizophrenia was the result of growing up with a cold and distant mother. Her theory was never proved through empirical studies, which would not have been easy to do.

Later on this theory was criticised from different perspectives. People said that there could be a number of reasons for an unsuccessful interaction between a mother and her mentally ill child. In addition, by portraying a parent as the reason for their child’s schizophrenia is a way of attributing blame and can prevent a parent from giving the help and support that is required.

The view of schizophrenia as a result of unsuccessful family relationships had many advocates particularly in the USA in the 1940s and 1950s. However, this theory was later abandoned, partly because of subsequent empirical research.

When neuroleptics started to be administered in depot form, it was discovered that treatment could prevent relapses. In the 1970s a group of British researchers showed that the risk of relapse was also affected by the emotional climate in the home environment. A high level of expressed emotions (EE) could increase the risk of relapse, particularly if they were negative, critical expressions of emotions or excessive devotion.

As a result of these studies, a new kind of family therapy was developed that focussed on helping relatives find a supportive way of communicating. This kind of family work has shown to produce good results, unlike family therapy that focuses on conflict.

Returning back to the Indian context, in India we are at a stage of infancy in the advocacy about mental health, and bringing all sides of it to a level playing field. Those who work in mental health from past experiences themselves are only a handful in number and they are extremely marginalized- the dominant voices, understandably belong to psychiatry, which is always on a high tide, thanks to the media, which loves mental health, yet only knows psychiatry as its representative.

The reason for me writing this blog post is to highlight two facts about John Nash’s life which are pertinent from the point of view of caregivers- one that through a supportive environment and by focusing on the functional aspects of a person, rather than their dysfunctional side (and who does not have a dysfunctional side in their personality) one can overcome most symptoms of schizophrenia. Love is an important device to utilize intelligently- yet not in an overly controlled manner the way most people do.

The second fact of Nash’s story is that he was NOT ON MEDICATION since 1970. In other words- thanks to the fact that he could continue in his line of work (mathematician, academic), be socially acknowledged for it (what could be bigger than a Nobel), be supported by his family (wife divorced and remarried him later!). How many families are willing to let their loved ones go off medication? That is the trick question, which everyone needs to consider. So in addition to going off psychiatric medication he was also in an employment. Rehabilitation via finding work, appropriate to one’s skill-set are among the surest pathways for recovery. Everyone needs to work – please mark this.

On the other hand, on a parting note, I will say that even in families where I have been involved, the only real outcomes emerge when families as a whole come into therapeutic conversations, and not individuals come for therapy. In India we have yet to reach that stage in mental health, though it may have been reached in allied domains of children, domestic violence or feminist counseling. Unless families enter the process, of empowering everyone concerned within the family-fold their problems and ‘mistakes’ will continue haunting the most weak people- who will show mental illnesses of this or that classification. Family therapy is not even a concern in India, and that is my concern. And whatever two penny bit counseling is offered to families it is largely done by psychiatry, as psycho-education, whose very purpose is to ensure compliance to drug therapy, as a first line of treatment, rather than address the underlying distress, and its sources.

You are NOT your label

For many months I have been wanting to write about Suneetha (name changed) who has been talking to me over the phone, ever since she read my article about recovery from mental illness in the Hindu newspaper. Suneetha told me that she had a schizophrenia diagnosis for over two decades of her life and she had been on a number of medications for that and then the comorbidities that appeared later.

One of the key things for her nowadays is SLE (lupus in some form) and then irritable bowel syndrome, which keeps her movements outside her home restricted. When I heard her story long back, I figured she had no reasons for a schizophrenia diagnosis at all. She was given some simple tablet, which could very well  have been a placebo for all the doctor cared, but he certainly gave her a label. She was in her school going years then. Many things happened, including marriage, divorce, brother’s suicide, mother’s death and so forth. Her medications increased over time but none of them had anything to do with her schizophrenia diagnosis, but sometimes memory, sometimes stomach, sometimes concentration. She feels the need to go and seek medical help for these conditions, which I feel basically happen because she is alone, alone and alone! I sometimes admire her courage to live alone and manage to spend a day by herself. It takes a lot for a single woman to survive, without much social support, a job or any significant relationships. It is very courageous indeed.

On this blog sometimes I want to note the interactions I have with this woman, who is now in her early forties, is fearful of going out of her home because she has fear that she may have to go to evacuate her bowels suddenly, as the bowel movement is not predictable, and that has made her life very limited in many ways. Many a times I just talk to her for a short while, 35-30 minutes and offer her courage and alternative ways of looking at her life, which she does not mind considering for the time we talk and even later.

I think the only thing people need is a voice to offer them courage, hope and remind them that there is a reason to be alive. She just now told me that she was very suicidal for the last two weeks, just like her brother (she said). And then she felt better by staying closely connected to her sister’s daughter. Even earlier she has expressed to me that she is happy to be with younger children. So I wondered then why not she go and work in a school, of young children, instead of wanting to work in an engineering job, just because she trained to be an engineer? Is it so difficult to choose happiness, I wondered? Perhaps she  understood and at my recommendation she has been looking around for a school job for the last few months and no longer focusing on getting a job in a company or corporate.

On a parting note she said that she just wanted to hear my voice, instead of writing an email to me, because she feels a lot calmer, once she hears me. And I thought, how much she would benefit if she could be in regular interaction with different sorts of people, who do not constantly remind her of her diagnosis but see what good she offers to them. This is the general tone of my dialogues also with her- building hope and courage. I hope to see new changes in her life, for I can see she is trying to create a new story, and go beyond her diagnosis. I feel just a little more time and things will start looking up. I have to remind her and myself that jobs are not so easy to come by these days, as there is a recession in the market, all over the world, whether we are aware of it or not.

I have hope because the channels of communication are open and many things can flow on those pathways. Recovery included.

Reshma’s Schizophrenia Memoir

The memoir of Reshma Valliappan is finally out and this blogpost is just about that. I do not think I need to say anything about it, because the article that I am about to share on the issue says it all. I must say why this memoir becomes significant is that the author stopped talking medicines, though she calls herself now a ‘schizophrenist’. This is a big contrast to my position, though possibly becomes it comes from research- where I reject any labels of mental illness and call it a linguistic rephrasing of people’s distress into medical categories.

Of course knowing Reshma personally, I feel she is one of the brightest, most energetic and vivacious people to be with. So to have such a high level of intellect is a compelling case of the spirit plunging to that low to offset the ‘highs’. Knowing bipolar the way I do, and knowing that it is perfectly ‘curable’ if someone is committed enough to deal with it, and persistent no matter what- I am beginning to feel that so is schizophrenia! of course the world is not ready to hear this, even though many people have been saying this for decades, including psychiatrists and linguists. That brings me to the point that I have been wanting to delve in for a long time- a study of psychosis!

So this is the  post- http://www.ndtv.com/blog/first-of-its-kind-this-memoir-shines-spotlight-on-schizophrenia-744812 that talks about Reshma’s story. I hope it will offer a ray of hope to some at least.