Koi baat nahi

— Praggapti Ghosh

 

The 21st-century world seems to find a solution for every problem, every situation, every event which puts you down, “koi baat nahi” or to say “it’s okay” the statements which seem to be used often no matter what the situation is.

This universal statement can be applied everywhere.  You share with your friend that you are having a very bad day, and just when you are about to share more, there comes a “koi baat nahi” slapping you right at your face, telling you to shut up, informing you that it does not matter, your emotions should be controlled by you yourself. You hear your colleague is sharing about a fight at her home, and you say “koi baat nahi” at the very precise moment she is about to lose it. This can go on and on in any situation you can think of.

The work of “koi baat nahi” here is to nullify the emotions as if the emotions do not exist. However, in reality, we can’t ignore the fact, all the emotions the positive ones like happiness and wonder and the negative ones like anger and disgust are normal and universal. There is nothing wrong with having them. There is nothing wrong in wanting to share them either. Sometimes all it needs to let go is one good ear to listen.

So, next time someone shares something with you, consciously remember that “baat hai” which means that “it matters” and try to replace the phrase with “I am listening to you” and “I am here for you”

And if it appears to you that you can’t be available fully to listen to someone accept it and let the person know there is nothing wrong in accepting your own emotions too, in the long run, it is much better than nullifying the emotions.

EMPOWERING “CARER-SAATHIS”

— Mridula Seth

Ever since I started volunteering with a nongovernmental organization working with persons suffering from mental illnesses, my understanding of the sufferings and challenges faced by the carers has increased manifold. I feel surprised, a bit guilty also, that even though I was living in a joint family, I was not fully empathetic with my sister-in-law whose son was as old as my daughter and who was struggling with him to cope with his education and social behaviour. As an educationist, I did realize that he needed special attention and the boy should go for special education, but because of our relationship, she was not ready to accept my suggestions. Years later, she told me that she had been struggling with him taking him for counselling without telling anyone in the family!

Our relationship improved when we started living in nuclear families and she became open to receiving help as her son was growing up and the gap between him and my daughter was becoming obvious! I used to feel terrible hearing my sister-in-law scream at him and sometimes bang his head against the wall while teaching him. I felt helpless and miserable but then got used to it over a period. Tarun (name changed)  could not complete his schooling and often compared himself with my daughter with whom he had a close relationship. His mother did not want to have another child knowing that Tarun had inherited some traits from his father, my husband’s elder brother.

While Tarun’s social behaviour as a child was overlooked by the extended family, as an adult it was not acceptable. So much so that the family started avoiding his parents in social functions, isolating them.  This did not affect Tarun’s father as much as his mother who was very sensitive and critical of the attitude of the family members. However, she did not complain to them and continued to expand her social circle where she became an opinion leader and much sought after in religious group gatherings. She even initiated activities with some women going to the old home, helping children get admission in schools and becoming a popular figure in her locality. Moving away from the joint family helped her establish her own identity where her friends accepted Tarun and his behaviour.

Knowing that he suffered from mental illness, my husband’s friend employed Tarun in his factory. However, he was unable to work with colleagues taking advantage of the friendship between his uncle and his boss. His memory, especially of names, places and love for travel, were assets but somehow, he has not been able to know his boundaries and that becomes a cause of irritation for most of the people! He is an extrovert and does not hesitate to call and meet strangers. His addiction to using mobile has many people block his number as he repeatedly disturbs them. He loves to provoke individuals and is intelligent enough to know what to say that can cause a reaction. He can become verbally abusive and break relationships, but his childlike nature makes him forget all grievances and become friends again!

Tarun’s obsession for using or misusing Facebook and digital technology landed him into trouble when he posted comments about his neighbour’s daughter and the neighbour threatened to complain to the police. That is when the need for sending him to Daycare centre was realized. His experience with the first one was not good but ever since he joined Sambandh Health Foundation in Gurugram, there is marked a difference in his behaviour and self-confidence. He learnt to make wax candles and diyas from the Blind school and has been improving his quality of products in the past two years. His aggressive behaviour in promoting his products often puts off customers who do not understand his mental condition. Over the last three years, I have earned his confidence and respect. He is unable to handle money. He hands over sale money to me and I give him a cheque to deposit in his bank. I was touched when after Diwali sales, he touched my feet in gratitude!!

In the past three years, I have realized the importance of being a “Saathi” (friend) to my sister-in-law especially after she lost her husband.  Her fear of what happens after she is gone has been her major concern for a few years leading to forming a Trust where my daughter and I are trustees. She keeps preparing him for being independent and living with some relative as paying guest or in a home which she is desperately looking for!!

The need for support to carers is being increasingly felt by those who are sensitive to the challenges faced by carers in looking after the physical and emotional needs of their loved ones. This recognition was voiced during the training programme organized recently through the C4MH (Communication for Mental Health) campaign for field level functionaries of nongovernmental organizations. Purpose of the training was to build the capacity of grassroots workers to conduct campaigns for increasing awareness on mental health and breaking silence for open discussions on mental health issues that are hush-hushed or bottled inside!

I have witnessed how Tarun builds imaginary stories and tells them so convincingly that his mother believes him and forms her opinions against others. Sometimes she reacts aggressively blaming others for their behaviour and lack of sensitivity towards her son. In the rehab Daycare centre, he gets into arguments with the counsellors and is sometimes verbally abusive showing temper tantrums threatening to cut-off relationships and discontinue association with the NGO. He takes pride in reporting against the counsellors to the management and his mother. As a silent observer and mediator between my nephew, his mother and the NGO, I have gained valuable insights that have made me understand the need and role of a “Carer-Saathi“(CS) or friend and supporter of the carers.

• In the process of empathizing with the person being cared, the carer tends to become vulnerable to mix facts with imaginary situations depicted by the person. This can lead to carer forming a negative attitude towards others interacting with the person. Carer-Saathi being relatively detached, can mediate effectively for removing misunderstandings.
• Carers need skill-sets to cope with their own emotional problems which are increased manifold because of their carer roles. Carer-Saathis, if trained volunteers, can be assets to them.
• Carers need space especially if they are looking after demanding family members. Sending them to Daycare facility provides space. However, if this option is not possible, home visits by CSs would be an ideal situation giving respite to the carers.
• Training programmes can be designed especially for carers and carer-saathis keeping in mind the needs and challenges faced by them. While some components can be generic, sessions for special needs of persons suffering from mental illnesses can also be built into the programme.
• Sharing experiences by carers and Saathis can be therapeutic and empowering improving the quality of life of the carers and their loved ones.

Participating in carer meetings on behalf of Tarun’s mother has made me explore the scope of identifying volunteers who can be potential friends or saathis of carers and empowering them with training and support.

 

The story about my success

–Aditya Rao

I from childhood had always been a shy and anxious person. I have struggled to make friends in the past and even now. Life has always and still is a puzzle for me that I’m trying to figure out. Who knows, maybe one day I’ll crack the code on how to manage life.

My major breakthrough in terms of mental health came in 2010 when I was put on a drug that didn’t suit me and I was flown to the US for treatment. Previously I had been wrongly diagnosed as a schizophrenic by doctors in India. In the US, they were able to detect anxiety and high functioning autism which seemed more accurate for me and still seems that way.

For a long time, I’ve had a spirit of never giving up in life. I feel that is the right spirit to have as it is only through facing dark times that you can appreciate the good times in life. Giving up means that you have not only given up on the hard times but on appreciating and savouring the good times as well. Things are still not very good for me with regards to my mental health, but I feel I should keep going.

Today I have my own business which I have started this year in April. Setting it up wasn’t easy and it caused my family and me lots of stress. Today it struggles to do well. But like always, I won’t give up till I’ve put in my best for it.

I hope you people realise through this story that to keep going no matter what. At the end of a dark tunnel, there is always an opening into the beauty of this world.

What After Me?

–Rita Seth,

Caregiver  and Founder Trustee, Sambandh Health Foundation

An unending cause for concern and debate in mental health circles of family caregivers!

Sambandh Health Foundation in Gurugram is a caregiver initiative to address mental health issues, started by families of people living with mental illness, coming together in 2011.

Let me share a recent experience. I was attending the funeral of a Sambandh client ( ‘Member’ of Sambandh).  It was an untimely death.

In the Sambandh family self-help group meetings, I had seen the pain and the desperation of the family and their inability to deal effectively with their loved one living with bipolar disorder. This is very common.

The family shifted from Delhi to Gurgaon, so that the daughter could visit Sambandh, the only hope they saw for her recovery. They built their house in a way that it could be used as a ‘group home’, a form of ‘Supported Community Living’ after the parents was no more. All arrangements were being made to make her future secure.

But as luck would have it, she could not visit Sambandh after shifting. She was diagnosed with a terminal illness. Her suffering was escalating. But even in that suffering, the family saw her acceptance of the fatality of the illness as if it came as a solace to her. She was more at peace with herself than ever before.

When I met the mother at the prayer meeting, for the first time I saw the relief on her face. She was calm and peaceful. She said to me ‘You have no idea how grateful I am to God for what has happened.’  Every time I touched my pillow at night the worry about ‘what after me?’ would overtake me from the time she developed a mental illness. Now I know that I have looked after my daughter to the best of my ability.  I have fulfilled my duty.  I know that she rests in peace and I am feeling so relieved, not having to worry about her future without me. Her suffering has ended and so has mine.

A family member has the courage to openly admit her relief at her loved one’s untimely death, which in any other situation would be an event of so much grief for the parents!

How do we resolve this issue?

Families struggle to,

• find residential facilities
• create a financial trust and find reliable trustees
• ensure that medical insurance is in place
• have psychiatric ambulances available in their state
• advocate for home visits by mental health professionals become part of the health care system, for ensuring medication, food and other physical needs after the rest of the family is no more

All of these are essential, given the nature of the illness. But are these enough? Is that going to satisfy us?

Will all this be enough so that we can sleep each night in peace and not worry about our loved one?

Can we as families be satisfied in continuing to live in unhappy relationships with our loved ones while we are still alive? Are we happy to see them live marginalized lives and be on the fringes of society?

What is it that we are willing to do now to change the quality of our lives and those of our loved ones?

People get unnerved with the experience of mental illness. Families are unable to understand the changes. I saw it happen in my own home with a sibling. I saw my brother’s transition from being a brilliant, socially vibrant person to an angry, stressed out person, losing touch with reality, hearing sounds, coping with unpleasant visions and life slipping out of his hands.

Mental illness can bring along a gap in education, in doing a job or continuing to be a natural part of a family. It makes the person feel that he is left behind and will never be able to catch up. There are identity and self-worth issues to be addressed, readjustment of expectations, rebuilding skills and relationships!  I could feel my brother’s desperation. Not just him, the whole family was in pain.

In silence, we shared the pain and denial.  The feelings of guilt, of shame, and a lot of self-doubts suddenly surfaced from some dark corners of our unconscious minds and gripped us all. The families need awareness and understanding of mental illness, they need help. But it was not easily available.

Most human beings are intrinsically helpful, but not understanding an illness, confusing it with bad behavior or bad upbringing is responsible for the stigma around mental illness and social isolation. Building a supportive community by spreading awareness is a crucial part if we want perceptions to change.

The behavioral changes, the uncontrolled symptoms give rise to the idea of ‘madness’. People get fearful and want to stay away. The one good thing my parents did was to share the problems with people they trusted so there was no conscious alienation from people close to us. But my brother was isolated anyway, always trying to be in his room, not wanting to interact. It was years before we realized that he was not being difficult. He was living with an untreated illness.

The limited perception of people living with mental illness is the biggest barrier in the path of recovery. There are ample examples in society today, of people living their lives well, even with mental illness. Treatment is available. Today we know that people can and do live happy, successful and meaningful lives.

Sambandh health foundation’s Recovery Model, based on the latest research, addresses all these concerns, those of the person, the family and community at large, through its various programmes.

The Community Integration Centre (CIC), a Recovery Centre in Gurgaon, helps its clients living with mental illness (Members) to rebuild confidence, find a friend circle, strengthen their core to be able to move out into the community with hope, a positive sense of self, changing attitudes, a renewed outlook of life and resilience.

For this to happen, talking to each other, moving out into the community doing those things that are useful for independent living or sharing the household chores play an important role, while still being a part of the safe Sambandh Community at the Recovery Centre.  Learning to manage money, operate a bank account, learning new life skills, sharing leisure with friends on weekends, going back to jobs and education reintegrates the person into their own community.

People in need of support can decide where they would like to start and how they would like to participate. The relationship of trust and respect with the staff gives the members the courage to open up and share their deepest desires and find support in realizing them.

Members venture out to participate in conducting workshops on ‘Mental Well-Being’ and create awareness about ‘Mental Health Issues’ by sharing their own personal journeys of recovery. This also empowers them and helps remove the internal stigma.

Sambandh’s family self-help groups meet for emotional support, finding solutions,  getting professional inputs,  overcome the feeling that ‘we are alone’ and much more! Families also come in for individual counseling for their caregiving role.

Awareness, as part of Sambandh’s Community Mental Health Programme in Gurgaon city and 4 villages around it, helps people to come out of their shell, seek help if they need or refer their friends and relatives to us. And then the recovery work begins. Collaborating with the existing stakeholders in the communities is a great source of strength for us.

Sambandh ‘Group Home’, a form of supported living in the community, in a flat near CIC, with flexible supports and recovery planning,  provides opportunities for learning an independent living.

Along with the Haryana Government, we have started Project Recovery, to take the recovery work into each of Haryana’s 22 districts.

People need to experience recovery and self-reliance while the families are still alive so that the families can leave in peace when the time comes.

Sambandh with its the web of human relationships and the connection with all stakeholders provides comprehensive opportunities on an ongoing basis to people living with mental illness and their families to live a fuller life.

I have feelings and emotions – because I am alive

— Vickie Rai,

Family Counselor, Sambandh

Typically in the course of our day to day life, we experience two basic kinds of feelings – joyful and painful. We also tend to loosely classify them as good or bad, positive or negative. By labelling them as good and bad or positive and negative we tend to sit in judgement over ourselves and others when we experience these so-called negative feelings which essentially are only painful feelings. Since from our childhood, we are encouraged to be ‘good’ we begin to find our ‘bad’ feelings as a problem and go to lengths to manipulate, deny or suppress them.

Feelings which interfere with our sense of well-being like anger, fear, confusion, hurt, shame etc would be experienced as painful feelings. And for most of these feelings, we may all remember being told, at times even lovingly and caringly  – don’t be angry, don’t cry, don’t be sad etc. The sense that we get is as if there’s something wrong if we feel sad or angry and somehow it’s not ok to feel them leave alone trying to express them. And has anyone of us ever experienced our anger or sadness simply vanish just because we were told not to feel that way?

What is the purpose of painful feelings or for that matter any feeling? Are feelings even important? The answer is a resounding YES. Feelings are critical to our being alive. All feelings. The tragedy is that when we begin to suppress our painful feelings we actually end up reducing or numbing our capacity to feel joyful feelings too. Feelings are indicators of how we are doing in life. Joyful feelings give us a sense of moving in the right direction and of assuring us. Painful feelings, if allowed to be acknowledged, are also telling us that something important may be happening which needs our attention. That possibly some of our needs are not being met. An apt analogy would be a pain at a physical level. Any pain experienced in any part of the body is a signal to pay attention to something that may be wrong and needs to be attended to and corrected. In that sense pain is our friend. Pain is not the problem but a symptom. If we didn’t experience pain we would live in oblivion and not be able to take care of ourselves and correct things in time. Once we acknowledge and pay attention to that pain we can take care of it by providing what is missing.

At emotional level too, our feelings are always drawing our attention to what’s important and what’s missing by always communicating with us. But are we listening??

Six times down, seven times up

— Vijay (name changed)

I am Vijay and got a job in a leading engineering company in the south after graduation in engineering.

I continued my practice of Karate and was selected for All India Karate Camp and was a quarterfinalist in the Karnataka Mens Open Karate Championship. I had some setbacks like a very bad case of jaundice and a broken jaw in a tournament.

I got a call from a reputed diversified Indian company. I had a nasty bike accident in Delhi where I had a compound fracture of my right leg.

The tension at home and work one day led to a breakdown and I left the firm with loss of pay leave. I was seeing and hearing bizarre hallucinations. I was taken to a psychiatrist who put me on medication and I took the medicines reluctantly. After I came to know I had schizophrenia, my world was shattered and I fell into depression and required medication for that too.

I also started studying for MBA entrance and made a decent MBA school.

I met a girl and we liked each other and as the relationship grew, I told her about my problem. She told me to stop the medication which was at a minimal dose and I stopped the medication and had a relapse after which we broke up.

I somehow managed to complete my MBA with a first division.

I got a job in an MNC. Though I did well, I had to travel to a factory very far away regularly. The stress got to me after some time and though I had been confirmed with them, I resigned. After that, I could not work anywhere beyond a few months.

All throughout, the voices, stress-related problems, anxiety and visual hallucinations were difficult to handle. I did not know what reality was for a long time. The medication affected memory and caused a lot of physical and mental sluggishness. The stigma of the illness has made me lose friends, religious associations and jobs due to it.

I was lucky in spite of my bad luck to meet good people personally and professionally who helped me cope and become better.

I am now working freelance for regular clients-one an international investment agency and an award-winning US startup and am totally financially self-reliant.

I read a lot and never gave up trying new techniques and have tried to understand my triggers for the illness and avoided them. I also used breathing techniques to modulate my stress levels.

I learnt Tai Chi & Qigong, mindfulness, mind control etc.

In between I there were setbacks personally, professionally and health wise but I overcame them with the help of excellent doctors, counsellors, support groups, wellness teachers and spiritual connections.

My interests and training in physical culture and meditation gave me a tremendous amount of fortitude and ways to bear and eventually overcome my problems. Faith in spirituality gave me hope when there was none evident. The illness forced me to understand myself better and realize gradually that most of my problems started with me or my environment. You can do it too if you don’t give up hope as they say you can lose but you must never be defeated.

Loving someone with Schizophrenia

–Khushboo (name changed)

 

Marriage is a big deal in India. A girl born into an Indian family, marriage planning starts right from the time of her birth. My parents had and I had been planning about the wedding ever since I can remember, (I mean not literally, I do have other work also)

I met this nice person and have been in a long distance relationship with him for the last seven years. Our time together has not prepared me or rather could not have prepared me for what I found out just before my marriage. I was young, twenty-three years old when I got married.  I knew nothing about life and hardship. In the 23 years before this, I had been living under the protective bubble of my parents. All my friends told me I was young, I should think about a career before marriage. I thought I was ready for it but now after more than a year I know I was not.

At that moment in time, I knew my boyfriend and soon to be husband well enough. I felt this was the right step. However, little did I know, it was like a wicked play of fate. Merely three months before my wedding he was diagnosed with schizophrenia, a severe mental disorder. He knew something was up but he had never expressed anything to me or to his family about his struggles and hid them in the closet for many years, due to the fear of stigma, labels/mockery, apart from losing his sense of identity. Isn’t this common in our society? We always evaluate ourselves from other’s lenses and that struggle is never-ending.

Now, what do I do… leave him or stay in the relationship was the new struggle in my difficult path. I was surprised and upset. I thought it was normal, what do you think?. However, I knew I had to become his support structure. I felt that I owed him this.

We both went to the psychiatrist together with his family. Caring for a loved one who has schizophrenia can be a huge challenge. At times it is both tiring and frustrating. But I continue to care for him and try to understand his condition. From my short experience as his caregiver, I have learnt that we need to help become self-reliant.  But how does one go about it?  No one knew. If your partner has schizophrenia, they may not be able to meet your emotional needs as they once did. Self-care including eating properly, getting rest and exercise might also be challenging at times. It’s perhaps easy to say, but ultimately, your life cannot be subsumed by the illness that your spouse is suffering from. You need to make sure that you have a life too.

If a person has schizophrenia, he or she must accept treatment. Left untreated, the condition can cause people to behave erratically, leaving them to become subject to substance abuse, emotional neglect, and delusional accusations.

We both (my partner and me) are very good friends.  And I think partners must communicate and trust each other. Open and clear communication can help people who have schizophrenia find the support they need as well as understand what is expected by the other in their relationship. This understanding has helped us to ease some challenges.

We juggle everyday tasks like household chores and balancing finances. Now I know that people who have schizophrenia may need extra help in managing their responsibilities. At times they are not able to recognize what you may want them to do around the house. But, I’m happy with the fact that he tries to keep me happy. In the end, I would like to say it’s not easy but I am managing things and providing the love, compassion and support which he needs.