Recovery Oriented Blog for Mental Illness

I have recently started a new blog, because I felt that I needed to strictly focus on recovery in serious mental illness, as a theme by itself and calling it any other name would not do justice to my commitment, engagement and research. I have, in the past, tried writing on this blog about mental illness related encounters I have had. However the purpose of the new blog is slightly different.

The new blog is committed to one single theme. All my mental ‘illness’ oriented work would go on that blog as it is also my desire to share with the lay intelligent reader whatever knowledge I interact with, in the course of my phd research. Since a researcher by definition tends to be looking into a vaster expanse of information, data, analysis and study than someone who is not a researcher, for reasons of social good and making research accessible, people could routinely offer small chunks of that knowledge to the wider audience. This is my attempt in that direction.cropped-website-hope-image

However research is not an easy journey to make, for it is largely solitary and a tough act of balancing one’s financial needs, professional goals, study commitments, family responsibilities, domestic routines and you name it. I cannot say I am in any enviable position except that to reduce the monotony of my work, I have started teaching classical music to a few youngsters- it is a breath of air for me. Of course I continue learning with my own guru also- another breather!

This blog post is basically to re-direct anyone who is connected to me for the above reason, to redirect their gaze in a more appropriate corner. You can well imagine that I am likely to post little on this blog, while my focus lies in recovery. However peace is close to my heart and at the heart of all my efforts. If one can help even a single person come into their own center, attain a little peace- they will gradually create their own peace and spread it further as well. I call the new blog- recovering self, because only in re-covering ground that people lose due to setbacks which are called mental illness, do we become our WHOLE SELF again- the self that we were intended by Mother Nature to be. The recovery blog is only meant to be a little offering in wholeness, a testimony to the work I am doing as well as a knowledge sharing blog- diminishing stereotypes about mental illness, challenging convention and offering alternatives.

Hope it accomplishes the intention of its birth.

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)

 

What will you do with our stories?

Last week I began my weekly counseling at the prison, by meeting with all the women inmates there. I was told their number is around 59-60, though I do not think that many came to meet me, in the open lawns, where we all met.

It was an unusual scenario for me – to sit and share with the ladies what my ‘job’ or presence in their midst meant. Most could not make sense of the word -counseling. For a moment I thought whether it was all a needless effort. There are a few non profits working among prison inmates, mine may be the third or fourth. I do not have a correct estimate of numbers yet. One of them is running a training program in several vocations- such as beauty culture, tailoring, adult education and even a creche for little children. On the whole the population is not very motivated, at least on a cursory glance.

As I sat there mid a whole lot of women from Haryana (the first time I was seeing so many together myself) I was just wondering in what language and expression to share the purpose of my work. Then I just began talking as we all sat in a gathering of nearly 35-40 women. I explained to them that I was here to share their lives with them and to help them cope better with the challenge of living life in a jail. I cannot imagine a bitter tragedy than imprisonment, and the seemingly futile effort of counseling those there.

Yet, not one to give up easily and wanting to make sense of life everywhere I feel I have to offer courage, the way I was offered courage by life and people in the years of my own suffering and solitude. I always believe that humans can be united in the idea of our shared or otherwise suffering- I have taken this from the Dalai Lama- the mindfulness that we all suffer, and that is the root of our common heritage as living beings.

To see so many people with hearts full of suffering, writ large on their faces is an experience of becoming humble, because you do not approach them with any solutions, nor wisdom, outcomes or legal advice- which they actually need. You just go empty handed, with a heart full of stories and ears willing to hear more. Your humility comes from the knowledge that possibly a whole lot of these in the jail are actually just innocent victims.

I spoke for awhile and then invited the women to say something if they would like to. Most did not, but some said they were trying to understand why I was there and what was the offer from me. Then one, who I find particularly bright and quite clear in her mind, asked me, “Madam I have understood why you will be here. You will hear our stories and may be note them somewhere. But will you keep our stories with yourself or will you do something more?

I thought may be I would do something later in research or write about the conditions of jails or how difficult it could be to live a life in jails for years altogether. But right now the agenda is only to work together with the women and understand what is happening in their lives. The truth is that nothing is happening- their lives are all frozen for now, and they live removed from the world in an artificial world of the prison, where nobody comes to meet them (barring stray family members when they can make the journey) and they live lives in their mind, missing loved ones, missing lives left outside the jail, lamenting the loss of what life leaches from them everyday.

What will you do with our stories, she asked me insistently. Not once, but many a times. Will you write them down and share them with the world or publish them in a newspaper? Will you write about us cropped-2014-006-2.jpgand tell the world about our lives here? Will you? Will you not?

I kept quiet for that moment and told her I appreciated her question and may be I would have to think about it. I came away and the question kept floating in front and her fierce, bright, challenging face questioning…till I arrived at a response. This is the response of me the human, the counselor that I find emerging from the recesses of my soul.

I will listen to your stories like a friend, not a judge and possibly witness their transformation, wherever possible help while you go over the difficult passages. I come in support and acknowledgement of your suffering. I am not a lawyer, nor court, nor judge- I am just a human who understands human suffering, and I am here because we all suffer. That is all. I hope to share this with her when I meet her again.

Mr. Rail Minister-acche din dooor hain

Dear Rail Minister of India, Mr Suresh Prabhu. Namaskar

I sent a parcel from Delhi (PRR number 4000377207) NZM station to Madgaon, in Goa on the 10th June, 2016. The parcel was loaded by a young man who works in our domestic enterprise, his name being Pundalik Zalmi.

Pundalik Zalmi (Gokul) is a simple village boy, who by dint of sheer labour and tenacity has worked his way into being the right hand man of the owner of the enterprise, my spouse. In his family he is the only one who has come so far- economically or socially. He was on his maiden trip to Delhi- to assist me with something. He took the parcel and landed up on the Nizammuddin Station. First of all, he encountered a coolie, who demanded Rs.1200/- to help him reach the parcel to its destination, which was the parcel office of the Indian Rail. When someone intervened the coolie agreed to do the job for Rs.700/-

In the ensuing pell-mell that happened somehow the coolie rushed him into the train, having booked his parcel allegedly on the same Rajdhani Express that Gokul was taking- train number 22414, NZM-MAO. When he got down the next day at Madgaon, the parcel had not reached with him- he went and checked in the luggage van too. He was confused, for it was the first time he was doing such a job.

Next day, and for several days after that he kept going to Madgaon Station every single day, a distance of eight/nine kilometers from our home, asking around for the parcel and then talking to whoever concerned at the station. Several times this was done by another of his colleagues Pravin Shirodkar, who is the driver in the enterprise.

After a few days, there was no sign of the parcel and everyday we were going up and down. Then I spoke with someone in the railway, who suggested I send a twitter message to report the misplacing of my parcel. I was anxious- I had just returned from Delhi myself, the day before and seven days after Gokul but the parcel was still not to be found. I needed the contents of the parcel for my next travel, which is due on the 1st July 2016- I have to return to Delhi with my two dogs, by Jet Airways. My parcel contained doggy crates- PVC containers meant for carrying small animals  by plane.

Upon the suggestion I sent the following tweet

PRR no.4000377207 sent HNzm to MAO_ Goa, 10Jun,16, not received till date. Plz help urgently. Load train 22414, PNR2765467844

This was followed by a daily round of tweeting to scores of people, who linked me to one another. The entire conversation can be seen here-

 https://twitter.com/HansadhwaniP/with_replies

Into the dialogue were roped the Konkan Railway, the Madgaon station people, the NZM station people, the freight people in New Delhi and of course the rail ministry in India. IN the medley, I saw many a bad egg and a few good apples too. This open message to you, Mr. Prabhu is written to bring to your notice one practice, which is perhaps going on regularly in the railways and is routinely unreported or brushed under the carpet.

After my first tweet of 18th, the following week, on Tuesday, 21st June after trying desperately to get hold of some information about the parcel we finally got in touch with one Superintendent at the NZM station called Mr. Meena. He told us that the parcel had been loaded on the train, as per the details here ( i noted them from the website myself)

Parcel/Luggage/VP Details
PRR No./PWB No. 4000377207 Scale Booking Date
From Station HAZRAT NIZAM-UD-DIN JN. Destination Station MAO-MADGOAN JN.
Consignee Name and Address – – – Consignor Name and Address – – –
Item Description Total No. Status
PVC GOODS 1
Last Loading Train No. 22414 Last Loading Stn. NZM-HAZRAT NIZAM-UD-DIN JN. Last Loading Date 10-Jun-2016 11:24
Status Loaded on train Stn. NZM-HAZRAT NIZAM-UD-DIN JN. Status Date 10-Jun-2016 11:25
Last Unoading Train No. Last Unoading Stn. Last Unoading Date

He repeated the same message to everyone concerned.

Now Sir, just make a note of the following- The time of departure of the Madgaon Rajdhani is 10:55 am. IF the train left at 10:55, can any parcel be loaded in it at 11:24 logically?

In several conversations, Mr. Meena (mobile number 09717- 999425) had with both me and my husband he repeated the same information. In the final dialogue we had with him, he even told me that the parcel had been sent to Panvel, instead of Madgoan (perhaps to get rid of our persistent queries?).

Since I was in touch with a gentleman called Upendra Shindye from the Konkan Railways, who had been kind enough to call me on his own, in response to my twitter message to Konkan Railway Corp, I requested Mr. Shindye to make inquiries at his end. He did- I think he even sent someone to Panvel, from Mumbai, though I am not sure about it.

We were already more than ten days from the time the parcel had been loaded. I was worried for a lot hinges on it for me in the present moment for me. Mr. Shindye promised to update me by the evening. The date being 22nd June-12 days later. Meanwhile our rounds to the Madgaon Station were in vain everyday- but we still went. Either Gokul went or Pravin.

Finally my husband went on 22nd- we were all worried, and he met someone there, who promised to help him, then did not call. Later a gentleman called up Gokul and spoke with my husband too. He identified himself as one Mr. Murli (mobile +91 9004476083)- who said he was investigating the case of the missing parcel. My husband proposed to him that he probe into one angle- that the parcel had never left from Delhi in this whole span of time.

Lo and behold…Mr. Murli called and confirmed the suspicion, and said that the parcel would be leaving on the 22nd June 2016, by Goa Express and reach Madgaon on 24th. Later Mr. Shindye of Konkan railways also confirmed the same. IN other words, in this whole span of 12 days when we were all tearing our hair, Mr. Meena kept misleading every single person- saying the parcel had been loaded on the train, whose details are there on the website.

Who is updating the website?

My query and concern to you, Honorable Minister is this-

  1. If the parcel was not loaded on the train, how did it start reflecting on the website?
  2. What sort of a fraud is happening here – in which people’s parcels are getting lost? I at least had access to internet and even twitter, but what about those who cannot use these new technologies? Do you think every Indian who is using the railways for sending parcels is having a twitter account- to knock at your doors for lost goods?
  3. I am told that people are compensated @50/- per kilo of the weight of their parcels. what sort of a way is this to ascribe value to goods people are sending? (My parcel was carrying goods worth at least Rs.50,000/-, though its weight was a mere 25 kgs)
  4. There is a deep flaw in the way parcels are tracked– and there is no verification happening. IF a man can tell us that the parcel has left the station, while it is very much lying on the station, what do you think is happening in this department? How can the website be uploaded and scores of people mislead?
  5. Can you please initiate an inquiry about how goods are getting lost in the Indian rail parcel service and start fixing responsibility for the same?

Can we think of simple village folks like Pundalik Zalmi who come from their villages and lose their belongings on trains, never to have any voice in the whole din and cacophony of the Indian Rail?

Is size of the Indian Rail so big that we do not now care about the common Indian people who use it day and night, putting their hard earned money into goods they transport by trains everyday?

Would a Pundalik Zalmi, not backed by his employers who were English speaking, twitter familiar people, have found his parcel? Would he have the resources to keep going to the station, everyday, leaving his work behind, without losing his job? What employer would have allowed him the leave and not believed that he was lying about the loss of the parcel? 

Today is 24th June, 2016, and true to the word given by Mr. Murli and Mr. Shindye, the parcel reached Madgaon and we duly got a call at 7am confirming that. We of course have to pay a price of Rs.2880/- as the rent of one of them, for we were being charged @ 180/day for the same. The parcel that would have come on 11th, would have meant only four days of rental, instead of the 16 it has become.

But that is not the point, Mr. Minister. The point I am trying to make is would the average Indian have managed to stir so much action? Are we really empowering our people by giving them redressal mechanism via the twitter and other social media?

I am grateful that the twitter action works, but how many Indians have access to it and they use the Indian Rail? Please stop by at any station, Sir, and take a look at the India that travels by train- maybe you would think of other ways to touch their lives and save their hard earned belongings.

(i wish there was a way to measure the quantum of suffering this experience has caused us, starting from the encounter with the coolie- a great shame I assure you)

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.

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.

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.