December 02, 2007

The Government has a different approach and perspective in dealing with people having HIV/AIDS as compared to those having Mental Illness in India.

Twenty eight years ago when my husband was posted at a town by the name of Barnala in Punjab, I remember an officer's wife crying bitterly because she had become pregnant. She already had four small children. She told me weeping that her husband did not like to use 'protection' and had also felt 'ashamed' to take her to the 'MI ' (Medical Inspection) Room for 'birth control protection'. There was always the nagging worry that some one in the 'MI' Room would tell someone else and everyone in the Air Force base would come to know and risqué jokes and innuendoes could follow, she said. This was despite the fact that there was a lady Gynecologist who was present in the MI Room. These 'MI' Rooms were like Clinics equipped with medical facilities for the Air Force personnel and their families.

I remembered this incident yesterday when my daughter came home beaming; a red ribbon pinned on her shawl with an armful of booklets and pamphlets after attending a function related to 'World AIDS Day'. Slogans like -'Use a condom to protect oneself from AIDS' were splashed all over the print and electronic media. What a change from those days when one felt a great deal of reluctance to utter the word 'condom', I thought. Nowadays this word is used with ease thanks to the awareness programmes all over the country by the Government of India which disseminates a lot of information about HIV and AIDS. These massive information campaigns on television are responsible for reducing inhibitions in most people in India to the extent that most today can speak with ease about 'safe sex ', 'using a condom' and so on.

Yesterday, powerful political leaders flagged off a special train from Delhi which would be travelling across the country with the purpose of helping people with HIV/AIDS. There was a deluge of reporting on Indian television channels about HIV/AIDS - of functions, walks, images of celebrities hugging people with HIV/AIDS and playing with children with HIV/AIDS.

The so called 'cultural differences' which are supposed to make us Indians 'so different' from the Western countries have not prevented the Indian Government from carrying out massive awareness campaigns about a deeply stigmatising illness like HIV/AIDS. In fact it is the sheer magnitude of these campaigns that have been responsible for the success so far in dealing with HIV/AIDS.

The voice of intense human suffering is the same all over the world be it India or any 'Western country'. There is so much suffering a person with a severe Mental Illness like Schizophrenia undergoes. So one cannot understand at all why in most debates 'cultural differences' are often cited as reasons for a 'different approach' to people struggling with severe Mental Illnesses in India when it is not so with HIV/AIDS. Equally pertinent is the fact that in a fairly recent report by the Government of India titled - 'Burden of disease in India' it is stated that there are more than 65 million people in India with severe mental illnesses. This is vastly larger as compared to about 5 million people in India who have HIV/AIDS.

Posted by survivor at 06:28 PM | Comments (1)

November 01, 2007

The 'Janadesh' march to Delhi

There was something inspiring reading about twenty five thousand people from the villages of India coming together and walking together to the capital Delhi for water, forest and land. The non-violent march began at Gwalior on 2nd October on the birthday of Mahatma Gandhi.

Many walked barefoot. Some with patched up slippers. Few had shoes. There were men, women and children who took part in this 'Janadesh' march. A few of these simple people were killed by trucks in the highway and some died due to the sheer exhaustion and cold in Delhi after the long walk. At the 'Ramlila' grounds where they had camped they were surrounded by a cordon of police preventing them from marching to parliament the next day and bringing Delhi to a standstill. It was reported that the government of India did take notice and announce a panel on land reforms which would be headed by the Prime Minister.

Many of us were curious and wanted to know more for there was something so moving about these simple people coming all the way from their homes in the jungle and villages of our country. The police cordon did not allow interaction. We wanted to hear the voices of these people but few television channels and newspapers covered this event on the days they were camping in Delhi. The television channels were mostly abuzz on an Indian becoming the richest person in the world and a beautiful actress and her actor husband 'fasting' for each other.

I saw some photographs by the BBC. The link is given below-

The images of this march have been beautifully captured in this video in YouTube

This 'Janadesh' march deserved more coverage and reporting in the Indian media. For these people represented the millions living in the villages of India - who had to come together from different parts of the country all the way to the capital just to be heard.

And to some of us without a voice or support and struggling to take care of a dearly loved one with a severe mental illness in India, watching the 'Janadesh' march gave us courage and strength.

Thank you for your comments Sachin,
Also- for the encouraging words. Peace be with you.

Posted by survivor at 04:49 PM | Comments (0)

October 22, 2007

8th October- The Indian Air Force Day

Normally the temperatures come down slowly in the month of October. Probably due to the prevailing global climatic changes the temperatures sharply dropped within a week this year. What a relief it is to wake up to days that are no longer hot and humid but cool. The birds have already started coming down from the mountains to nest. I wonder how many would be able to go back with their young. For their nesting grounds in Delhi are slowly disappearing. The place I live has many 'Rain trees' still full of pink flowers even on the low lying spread branches. During a moonlit night, against the backdrop of dark green leaves the delicate flowers emit a pink lustre. By the end of this month the flowers will wilt and drop.

The 8th of October was the 'Air Force Day' - celebrated every year in the Air force bases in India with impressive parades and air shows. I can still remember vividly watching a magnificent Air-show from the roof-top of our home in the holy town of Allahabad. It began with two large helicopters swaying dangerously close to the ground trying to keep pace with a Hindi song belted out by a young officer, followed by fighter aircrafts effortlessly performing aerobatics - tumbling all over the great blue sky . Probably it may be the fact that I was sixteen, carefree and filled with patriotic zeal; no other air show I have watched till now can match that particular one.

This year one memorable function we attended was one at an Air Force base my husband had commanded. It was more than six years since we had left that base. During that tenure my daughter had been unwell. It had been a difficult time. She was on Haloperidol then. The sensitivity was so heightened, the depression and restlessness were terrible. She was not able to read at all -something which she loved. Falling asleep had been so difficult. Our psychiatrist had slowly tapered Haloperidol and the new medications had been slowly introduced. What a difficult time she had gone through during that switch over period. She did not want anyone in that base to know about her condition. She told us that it would be difficult for her. So we had to make sure that no one knew. That took a lot of effort. It was not easy. The memories of it all came back on the long drive to the base.

At the function I look across the garden to see my husband smiling surrounded by his students who have become senior officers in the Indian Air Force and I feel so happy. Many now know and understand and it has not changed the way his students treat him - with regard and respect.

Posted by survivor at 03:21 AM | Comments (1)

October 04, 2007

Trying to keep a family intact in India amidst the havoc of Mental Illness

How quickly the days have flown. The months of August and September have come and gone. It is the beginning of October. There is so much to write about but I could not find the time to sit down and type out the words that need to be written. For one it takes so much longer to do all the regular activities to keep the home going and then of course the efforts to keep life going on in even keel - which can be so exhausting.

Over the years I have found that when the home is kept functioning well with regular meals being cooked, everyone in the family is so much more content. During the periods when my daughter is well, she cooks. Feeling well is when as she puts it,'when the thoughts come in slow and silent, when the ability to focus persists for some time, when the hands are able to be steady, when the feeling of apathy disappears and energy surfaces'. She loves trying out recipes from various cookery books. When she cooks I enjoy the aromas coming from the kitchen that bring the promise of a tasty meal.

Chores are generally defined in any home in the sense that which family member does what. The lines have become blurred in our home. For with chronic schizophrenia hovering around, one of us has to do more or the everyday tasks need to be prioritised otherwise arguments break out leading to more exhaustion and depleted energy which is just not worth the while. The daily tasks in a home are varied depending on the family resources and where one stays. For us it includes filling up water for the day, switching on the pumps in the morning to pump up the water into overhead tanks, boiling water for drinking, cooking meals, shopping for milk, fresh vegetables and fruits, watering the potted plants, combing the old cat who doesn't like to be combed, cleaning her litter box and cuddling her while she purrs with contentment. A weekly task which my husband does is filling up the daily medication for our daughter, into pill- boxes which are now available in India. It takes more than an hour to segregate and cut some of the pills and put them into different compartments which make it convenient for her to take them in the morning and evening.

And then there are the visits to the hospitals every month for the three of us. The hospitals lie in different directions. The roads have become so crowded these days. On the roads I can see more and more people who have left their villages - for they stand out. Innocent bewildered faces, wearing the distinct colourful attire of their villages watching their children perform cartwheels at the traffic lights. The children thrust their hands into the windows of cars for coins before the traffic light turns green. They seem oblivious of the slush being splattered on them by the passing vehicles.

When I see them I wonder if it is failing crops and hunger that have brought them to this city. How would they cope with the changes? Especially the trauma of living homeless in this city keeping the fragments of the dignity and culture they grew up in. And what if their anguish became so unbearable triggering into a serious mental illness? How would they take care of their loved one when there was not enough money for food? It is during times like these that I fervently pray and thank God for the blessings that have been given to us to take care of our child.

For as technologically and economically advanced as we are as a country, people living with serious mental illness in India and the families they live with - have been neglected by successive governments. They are left to fend on their own with limited resources, with no awareness of treatments, not knowing how to manage the episodes of psychosis, violence and attempts at suicide, no places to recover from the relapses, no insurance to meet the expenses, no opportunities to earn some kind of livelihood and no one in the Government with courage to come forth to help them. They can only discover and learn what to do only through their own painful experiences. Sometimes they adapt, sometimes they grieve at the loneliness of it all, and those that can, try their best to keep their families intact amidst the havoc wreaked by these illnesses.

Thank you for your comments
Dear gsivakumar, HeartArt, tathagat, Chandansharma, fei mui kuai, and so many others for sharing your stories and sending your best wishes. My prayers are with you all.

Dear Sachin, Please do write to me through this blog and share your story.

Dear little indian, I am sorry to hear about your relative. I hope things are better. I agree about the lack of support, the ridicule and the stigma which exist in India which makes life so difficult.

Dear jyoti, I wish I knew the words of the prayer which you wanted. Perhaps you could find this prayer in prayer books published by the 'Gita Press, Gorakhpur' or 'Ramakrishna Mission'. I have found many such books in book shops at the railway stations.

Dear Yaya, I am so happy that you found some solace with this prayer. I can understand your concerns about Cassie. You are going through such a difficult time. I am sure that the deep love you feel for your children will help you tide this period. Please take good care of yourself and continue to be brave dear mother. As always I remember you and your family especially Cassie in all my prayers.

Posted by survivor at 11:54 PM | Comments (2)

August 13, 2007

The Sanskrit Prayer

There is a Sanskrit prayer which I learnt when I studied in a government school called the 'Central School'. We chanted this prayer after the 'school prayer' during the morning assembly. Central Schools are presently known as 'Kendriya Vidyalayas' which means 'Central Schools' in the Hindi language. Central Schools were started sometime in 1965 for the children of the personnel of the Armed Forces. The curriculum was similar in all these schools. This made it easier for the children to move from one school to another when their father was transferred to remote places. So the family could be together. There were many memorable and happy moments when I studied in these schools. Years later my children too studied in the Kendriya Vidyalayas in different parts of India. By then so many things had changed. The number of children in each class had increased. The teaching had become indifferent. The Science laboratories had lesser facilities…. But one thing remained the same - the Sanskrit prayer.

This is the prayer - "Asato Ma Sadgamaya, Tamaso Ma Jyotir-Gamaya, Mrityor-Ma Amritam Gamaya, Om Shanti Shanti Shantih!" which transalated in English is … "Lead me from the unreal to the Real; Lead me from darkness to the Light; Lead me from mortality to Immortality. Om Peace! Peace! Peace!

Some evenings my daughter sings this prayer after she lights the prayer lamp. The melody of her voice and the way of chanting evokes so much of peace in our home. She chants this prayer silently along with other prayers when she travels by bus or goes for a walk in the evening. She says that it helps her to reduce the intensity of the feelings and thoughts which sometimes arise from within.

Thank you for all your comments, for sharing your thoughts and experiences in response to - The Indian Institute of Technology and Mental Illness.

Anshul , It must have been a terrible a shock for you when your batch mate died. You are so right, there is big need for more in-depth reporting about suicides and depression in India.

Jayanthi, you had written - "It is also sad that most of our children, who are have made the mistake of taking sciences are coming out of our schools as mental wrecks." Yes this is thought provoking. For instance all children who score very high marks in Science in the Class Ten Board Exams do not do well after choosing Science Subjects as Electives in Class Eleven. I wonder if this has something to do with the huge amount of subject content to study in Science subjects in Class Eleven and Twelve compounded by the inadequate facilities for Science teaching in most schools in our country.

Sudeep, I don’t know how this blog came in the but thank you for the encouraging comments. Yes there is very little emphasis on emotional intelligence in most schools. As you have written "a place to learn to understand and handle mental and emotional issues" would help.

Jayanth, these are very interesting topics that you have written about -the immense changes within the IITs - attitudes, approach to teaching, relationship between the teacher and the student. And of course the dilemmas teachers have to face these days. I think it was Marie Curie who had said, "Nothing in life is to be feared. It is only to be understood." From the way you write you seem to have a great deal of understanding of what children have to go through these days. I can understand your fears.

Posted by survivor at 05:32 AM | Comments (5)

June 23, 2007

The Indian Institute of Technology and Mental Illness

While my husband is recuperating I receive telephone calls from concerned friends and family relations who enquire about his well being. Most of them know that my daughter struggles with a serious mental illness. When some of them tell me that they have prayed for our family I am moved.

One telephone call is troubling. It is from a seventy year old lady I have known for more than thirty years. She is concerned about her brilliant nephew who is living in USA. He had passed out of one of the renowned Indian Institute of Technology several years ago. His life was falling apart. He had stopped going to work because he said that his colleagues were trying to poison him. He said that people were following him. He was unable to sleep. His marriage too had broken up. There was no one to help him. His mother is no longer alive. His father who was in India did not want to go to USA. He refused to acknowledge that his son was very ill and needed to be treated quickly and helped in his recovery.

This reminded me of an unassuming, scholarly young man, who also graduated from an IIT few years ago. He got a scholarship to the prestigious Rensselaer Polytechnic Institute in USA. After completing his Masters at Rensselaer, he worked in USA for a few years and returned to India after he became aware that something was not all right. In India marriage is touted as a cure for mental illness. So he got married. Unfortunately it didn't work out. He married again after much coaxing by his family. This too broke up leading to a severe relapse. He is better now with regular visits to the psychiatrists, a regimen of medications, exercise. He is not able to hold a full-time job. He is reluctant to come out in the open to talk about his illness. People only want to hear the success stories of graduates from IIT achieving wealth, fame and glory. I wonder how many would want to read about an IIT ian's struggle with mental illness.

In India few talk about the fact that like any other institutes of learning, young men and women who study in the Indian Institutes of Technology popularly knows as IIT are also vulnerable to severe mental illnesses. Many who have passed out of the portals of these hallowed institutes struggle with serious mental illnesses like Depression, Bipolar Disorder, Schizophrenia…. Over the years I have read numerous newspaper reports of young men studying in IIT who have committed suicide. I feel sad that the Indian media and society still accepts such suicides as natural and justifiable phenomena. Families who have lost their child forever have not only to deal with grief but also the ignominy of their child being branded as 'coward', 'weak', 'weird',' deranged psycho'…by self-styled experts of suicide. The reasons often attributed to suicides are -' family problems', 'bad mothers', 'being a loner', 'coming from a small town', 'lacking mental strength', 'not being able to cope', 'too much of stress', 'result of a failed love affair', 'low tolerance' and even 'after all he had depression'. What is alarming is the continued acceptance of suicide by young people in India as the natural corollary to Depression. And that no one has paused to ponder that there are so many so called 'cowards'-- who have family problems, who have 'bad' mothers ,who come from small towns, who have difficulties coping, who have experienced a 'failed' love affair ,who supposedly 'lack' mental strength or 'low' tolerance - who have not committed suicide.

Posted by survivor at 11:40 AM | Comments (4)

June 22, 2007

The second of June - a night to treasure

A few days back on June 2nd there was an unusual celestial event in the night skies. Some newspapers had written that most of the planets of our Solar system would be visible in the night sky. That night was oppressively hot and humid and buzzing with blood-thirsty mosquitoes. One just didn't feel adventurous to climb to the terrace of our home and look up into the night sky. But we did so - after eating a delicious Chinese dinner.

My daughter took us out - to an old restaurant which had been redecorated and still serving excellent food. It felt so good. The three of us had not been out together for such a long time. We also stepped into an old bakery which served delicious Chocolate Mousse. Later we sat on cane stools amidst swirls of smoke from the burning 'mosquito coils' which were balanced on empty soda bottles. The mosquitoes stayed away. Venus was clearly visible next to the moon. Mars, Jupiter and Saturn could be seen too in the night sky. We sat for a long time in silence past mid night into the next day. It was such a wonderful night.

My daughter had been so thoughtful and taken so much of effort for us to have a good time. To ease the anxiety in our hearts for her father was going to be admitted to the hospital the next morning - for a surgery.

It is such moments that I will always treasure.

Posted by survivor at 04:54 AM | Comments (0)

May 25, 2007

For different ailments of the brain - the soothing music is the same

It's been many months that I posted here. I simply had no energy to write. All the energy within me seemed to have depleted. Probably it was because I was away from my home for long periods. Each time I left it was with reluctance for I felt frightened that my husband or my daughter would fall ill. My husband had not been well. I would pray fervently to fight off the fear. But I had to go to pay my debts of gratitude - to attend the weddings of my friends' children in different towns. These were friends who had helped me in my difficult times. I enjoyed the weddings, being with my friends, their warmth, the caring, the fun and the laughter despite the fear that lurked like a shadow.

When I got back home it was with mixed feelings of relief and weariness. The relief of finding that all was well at home was so immense. Each time I returned home - it became more difficult to get back to my old activities. I had to sleep a lot otherwise I felt too drained to talk or listen. The silence of my home interspersed with the song of the birds in the nearby trees seemed to me the only constant. It was so soothing giving me the strength to move on.

I was also away for many weeks to be with my mother who was recovering from stroke. When she saw me she hugged me her eyes sparkling. She looked better. My father looked tired yet happy. I think it was because his old wife and companion had returned. The delirium, the psychosis, the incoherence of Stroke, low sodium and Parkinson's had receded with the tablets which he crushed, powdered and then dissolved in water four times a day. My father at the age of eighty five had become a caregiver to my mother who was eleven years younger to him. There was a nurse during the day time but at night he took care of her.

I went to help them to slowly change into new routines. My mother slowly started going to the dining room in her wheel chair to have her breakfast and then her lunch at the dining table. There were no more sponge baths. As the days were hot she would be taken to the bathroom and helped with her bath. She said that she felt happy. Probably there was lesser time to brood as the day was filled with more activities.

My daughter had given me a list of different kinds of music to be played through the day. We had discovered through trial and error the notes of music which had helped my daughter whenever the symptoms of her illness had surfaced. There was no CD player. So I went and got one. I noticed the difference in my mother. The soothing Sanskrit chants, the energizing yet not too stimulating melody of the Santoor and the calming notes of the flute seemed to chase away the restlessness, agitation and fatigue which troubled my mother. It was strange. My daughter struggled with Schizoaffective Disorder and my mother with Stroke and Parkinson's. These were different ailments of the brain but the music which helped and soothed was the same.

The last time I was with my mother I was fortunate to see the Laburnum trees growing there - in Kerala in full bloom. These golden flowers still have the power to kindle within me a strange kind of elation and contentment. When I got back home I find that the Laburnum Trees here have shed all its leaves and are blooming gloriously. As the day temperature here soars, the trees have become laden with hanging clusters of golden flowers. It’s such a brilliant sight.

Posted by survivor at 03:27 AM | Comments (0)

December 10, 2006

Human Nature, Love and Relationships

“Such a feeling is coming over me, there is wonder in everything I see, not a cloud in the sky …” As I danced tonight to the old song with my friends, in the cold wintry air I could feel the surge of happiness after a very long time. It was like the beginning of a flickering flame which slowly spread into my very being - banishing the numbness which had threatened to become a part of me. And the glowing charcoal in the thick iron stoves placed all around the big tent added to the warmth. I was so blessed to be with the ones who understood me and who cared about me I thought as I looked at my friends. It felt so good - just being happy.

The past few months were spent away from home. And in October I had to go to Kerala. It started with a phone call from my father who was bed bound for so many months. He had broken his leg which was operated twice and had still not healed. He said that my mother couldn’t move her right arm and legs. I urged him to ask someone to take her to the hospital as soon as possible. There was no one he said. Was he too weary to ask his nephews or his friends? I still do not know. It took me four days to reach my parents. My mother was very ill by then and later in 'Critical Care' for several weeks. While my brother and I sat outside waiting, I thought of how my mother had taken care of my brother and me when we were young. What a creative woman she had been. There was not much money but she made sure that there was plenty of delicious food on the table for us. The warmth she had brought in her home. The dresses she sew, the delicate embroidery, the beautiful garden she tended, sweaters and socks she knitted for many soldiers who fought for India in the 1962 war. What a woman she had been – pioneering work in welfare for Refugees and Airmen’s families after the 1971 war. And later ... how relationships had changed after mental illness had entered our lives. How expectation, anger and sorrow had clouded my love for her.

When she came out of the coma she spoke my name and my brother’s looking at us both with such intense adoration. I understood then the complexity of human nature, love and relationships. She was completely paralysed and I wanted to run away from it all - to the Himalayas away from all the pain and suffering of the ones I love. Her brain had been traumatized by stroke and low sodium levels. She was also diagnosed with Parkinson’s. I prayed with desperation for the strength to help her in the struggle. I was able to be by her side while she slowly became better. While recovering she spoke so often about her love for my daughter. It was so comforting to be with my mother. My anger towards her has gone - forever. Watching her suffering has been so very difficult.

Meanwhile my daughter was able to cook meals for her father, take care of our home, the cat, the plants - and so well. She spoke to me every day wanting to know everything. And she said -“Mama it is Grandmother’s brain that has been affected. We all know how it is. Take care of her and help her. Do not worry about us.” I will always remember these words and am grateful to God that she could do what she wanted to do in a difficult time.

Posted by survivor at 03:43 AM | Comments (3)

July 02, 2006

Suicide of a young, brilliant, lady officer in the Indian Army

About a fortnight ago, a woman officer of the Indian Army, a Lieutenant shot herself dead in the Command Headquarters in Northern India. This tragic death led to a flood of shocked responses from society. In an interview on a television channel a Brigadier of the Indian Army stated that – 'the officer was suffering from low self-esteem and was being treated for Depression.' A very senior retired lady officer, a doctor, stated that one had to be both physically and mentally strong to cope with the rigours of Army life. Did it imply that the Lieutenant was not mentally strong to cope? She was ‘a brilliant and strong girl’ - said the people who had known her well in the town she had grown up. 'She was a gold medallist' stated her grieving father. No one seemed to pay much attention to her younger brother's words. 'It was Depression - nothing else', he said. Unfortunately only those of us watching with loved ones struggling with Mental Illnesses would have understood. In the frenzy of media reporting no one highlighted the young Lieutenant’s battle with Depression. It was assumed that Suicide was the natural culmination of Depression.

To watch their dearly loved daughter spiralling down into a deep Depression must not have been easy for the Lieutenant’s family. Living with someone with Depression takes its own emotional toll. And finally to hear the one you loved deeply being spoken of just as someone with a ‘personality weakness’, ‘low self esteem’, ‘lacking confidence’ is so cruel. The senior officers in the Army interviewed on television attributing such qualities to the late lady Lieutenant showed appalling ignorance and insensitivity. Disregarding the fact that less than a year ago, the same lady had done extremely well in the Training Course in the Army Centre.

Hospitalization and timely help could have made this suicide a preventable tragedy. But then the Military hospitals in India do not have psychiatric wings with ‘beds for women’. Presently the psychiatric wings have beds ‘only for men’. The reason why wives and daughters of personnel in the Armed Forces cannot be hospitalised even when they are in acute condition. If at all a lady officer with a psychiatric condition is hospitalized, which is rare, it is done so in the General Ward of the Family Wing. There are ‘escorts’ that are posted to protect her from self-harm and other actions that result from the disturbed thought processes that occur when one is very ill.

The tragic death of the young lady Lieutenant has led to fiery debates about equality for women in the Armed Forces. That there must be equal opportunities for combat duties in the front and so on. However it is strange no one talks about parity in mental health services by providing crisis intervention centres and hospitalization in mental health facilities when a lady officer, wife or daughter of uniformed personnel is in the throes of acute Depression or severe mental illness. Today many uniformed personnel serve in the borders of our country and many families stay in their villages tending to their piece of land for an additional income. I remember meeting one such mother whose husband would come home once a year, off-duty for his annual vacation. Her daughter struggled with Depression and was often suicidal. She would tell her mother to tie her feet with a strong rope to a pillar before the feelings to kill herself became overpowering. She would stay tied while the mother went out and worked.

Eleven years ago when my daughter sunk into Depression, the good psychiatrist at the Military Hospital told me, “Make sure she is never alone, but be discreet.” I thought then that it was to take care - in case she had the reaction to the medications which she had just started taking. I recall how I trembled within all the while waiting for the unknown. Today with better understanding of this illness when my daughter goes through the debilitating relapses I know why the psychiatrist wanted me to watch over her.

Posted by survivor at 01:53 PM | Comments (4)

June 20, 2006

Writing for the first time in 2006

I am writing here for the first time this year. I have been away from home for a while. When I return, it is still hot but something seems to be different. The Laburnum trees have blossomed. Some are so laden with the golden yellow Laburnum flowers; there are no leaves, only charcoal branches which act as a foil to the beauty of its flowers. As always I feel so happy when I see these trees. It is late when I reach home so I try not to make any sound as I open the door. But my daughter is awake and she comes down to greet me. As I unpack, we talk. I feel so proud that she managed so well when I have been away. She took care of the home, the old cat, cooked for her father, did so many chores and she looked happy.

This year has been full of challenges. My daughter’s relapse, her recovery, the resultant exhaustion, my illness and not being able to walk without support, physical pain which I look upon as an old friend visiting me again. The weariness of it all tends to overwhelm me one evening when I dress up to go to a get-together for the effort to get ready tires me. There I meet an old acquaintance who sees me with a walking stick. I have been never been very friendly with her but she comes running to greet me. Strangely her words have helped me so much. She took my hand in hers and said – ‘Surely you can’t give up. You have been through worse.’ The chaos recede as I think of each battle fought in our lives, the prayers to God for the strength, the resolve - not to let bitterness seep into our lives. It has not been easy but I am grateful to God that we have survived so far.

Posted by survivor at 03:19 AM | Comments (2)

December 27, 2005

Poor, yet so rich in understanding and love.

Getting down from the auto rickshaw after buying some vegetables and provisions from the nearby market, I saw a middle-aged woman standing near our front door. She looked familiar but then one saw many like her dotting the sides of the roads of Delhi – disheveled, weary, marked with poverty. As I approached her a smile lit up her tired face. She asked me if I wanted a cook. I replied that I did not want one. She said that why didn’t I give her cooking skills a try for she knew many dishes ranging from Hyderabadi Biriyani to Seekh kebabs. I asked her as to where she had learnt how to cook. As we got talking she said that she was from Aligarh a town in another state. Cooks were not paid well in Aligarh so she had moved to Delhi many years ago. She had not married for her elder brother had become ill when she was in her teens. Her parents died soon after, she said. As arranged marriages were still the norm no one was willing to marry her unless she cut off all ties with her brother which she refused. I asked her why the prospective grooms wanted her brother out of her life. She replied that he was mentally ill pointing to her head.

Her brother had been ill for more than thirty years. He lived in Aligarh with his younger sister who took care of him. He was well when he took his medications which could not be given regularly to him, she said. The money she earned in Delhi was sent to her younger sister by a Money Order for their living expenses and the medicines. The Money Order was often delayed. Then the brother had to go without his medicines. He would become withdrawn, not talk or eat, start talking to himself and slowly his behaviour would become so bizarre, even biting people who came to the house. When he took his medicines again, it took a lot of time for him to become better but he helped around the house, she said.

Her eyes misted when I told her that she seemed to understand her brother so well much more than the educated people. She said that he was such a loving brother. She would never forget the time in her life when he was well. Even then he was quiet – never expressed his love. He used to earn then and spent all his money on thoughtful gifts for their parents and his sisters. It was those memories that kept her going. She knew that it was the illness that had made him unable to earn a living.

Her day started at four in the morning as she worked in five houses as a cook. I thought, she did not know how to read or write but had the precious gift of understanding and a capacity to love that had triumphed all odds. So different from some of the well-off families that I had met, who had a family member struggling with schizophrenia. One mother, a wealthy doctor when speaking about her daughter’s behaviour always said -- ‘these people’ are so religious or ‘these people can never hold on to one job’ and so on. I felt so angry but never could tell her that having the illness did not mean that one had to be classified into a different category of ‘these people’.

Today this poor loving sister couriers the money so that it reaches her brother in time. She says she will bring her brother to Delhi when he is able to travel, to take him to a psychiatrist for it is years since he has visited one. It may take a while for the feeling of people staring at him is very strong, she says. It is people like her that inspire me – poor, leading a life of such hardship, yet so rich in understanding having the tremendous capacity to love.

Posted by survivor at 03:00 PM | Comments (6)

December 21, 2005

Disability Day, Drug prices, Patriarchy and Support groups

Last year on the 3rd of December, the International Day of the Disabled people, I took part in the annual walk organized by Mr. Javed Abidi an eminent and courageous activist who has pioneered many improvements for people who struggle with physical disabilities. Mr. Abidi moves in a wheelchair. I went up to him that morning and asked him if there was any organisation present that day which represented Schizophrenia or mental illness so I could walk along with them. He said there were none. So I walked along with an organisation which worked with children with learning disabilities. It was a sunny day and I enjoyed walking with the children, their families and teachers. We sang songs as we walked slowly behind other organisations around the magnificent war memorial- the India Gate. One of the mothers insisted I help in carry their banner which I did. Later I shared their tea, soaking in the warm winter sunshine. We then parted, bidding goodbye, wishing each other good luck. Some wished me luck hoping that in 2005 I would walk with people with mental illness carrying our own banner.

Their good wishes helped for in 2005, we carried our banner to protest against the Patent Amendment Bill, before it was tabled in parliament in March. Along with people with HIV, we took part in a protest demonstration opposite the parliament to highlight the repercussions of high drug prices on the mentally ill in India. Unfortunately the Patent Act was passed by the Indian parliament in March without adequate safeguards. Following the passing of the Patent Act, a representation was made to the Chief Commissioner of Disabilities, Ministry of Social Justice and Empowerment seeking that all the drugs for treating major mental illness be included in the "National list of Essential Medicines" and that this list be constantly updated with newer effective drugs and brought under price control. The Chief Commissioner on the basis of this representation sent a letter to the Health Ministry and the Drugs Controller of India. Both are yet to respond. The reverberations of the Patent Act will be felt in the future, like a Tsunami, when people living with mental illness and their families in India will not be able to afford a new drug that offers a cure or a new drug that could alleviate the distressing and disabling symptoms of schizophrenia.

This year on the 3rd of December, I attended a meeting held by Action Aid India. This was probably because we had organized a few support group meetings for caregivers at their office last year. Those that attended the support group were the fairly well off. Since a heterogeneous group of caregivers from all sections of society was wanted for the meetings, I had to make several visits to government hospitals to meet the head of the department of psychiatry to take permission to distribute notices to families. I met many families. A lot of people wanted to attend the meetings. Most could not. Many who wanted to attend could not leave their ill relative alone at home because there was no one to take care of them. Some mothers wanted to come - either their husbands would not allow them or they were too frightened to ask them. Patriarchy came in the way. At the hospitals I listened to the venting of emotions of weary families feeling all the more helpless unable to help them .I was finding it difficult to drive in my own car in the chaotic traffic of Delhi so I had to spend a lot of money in auto-rickshaws for transportation. Action Aid gave us space to meet and helped in photostatting notices. For funding, I was asked to put up a proposal which I did. Unfortunately months later I was told that the head of Action Aid had changed and the future of the proposal was uncertain. That was the end of the support group meetings at their office. I never heard from them till I received an invitation from them for this years Disability day function. Meanwhile I had moved on - to form a self-help advocacy group, the beginning of an unimaginable and unforgettable journey.

Thank you for all your comments.

Dear Antonietta,
Thank you for your encouraging words. My prayers are with you and your sibling.

Dear Moeder,
You had written – “The thought of my child not surviving is unacceptable and it is what keeps me fighting and striving for wholeness in her life.” So thought provoking. Probably this is what drives us through the periods of intense struggle, the resulting exhaustion while helping our children battle schizophrenia. My prayers are with you, Cassie and your family.

Dear Ann,
Thank you for your birthday wishes. I hope you and your son are well. My prayers are with you.

Dear Jim Crowe,
You had written about the hospitals in India 'they are grossly under funded and in very poor condition'. Yes there is a crying need for improving facilities in hospitals, building more hospitals and rehabilitation centres. In India ignorance prevails alongwith stigma. Most do not know that these are severe illnesses of the brain. India has a National Mental Health Programme formulated in 1980 wherein public health education is mentioned as one of the goals. Strangely the government has its head buried deep in the sand despite the growing numbers of people with mental illness. Best wishes to you and your family.

Dear Tom Ilsey,
You are so right that living with families helps people with mental illness. Families need to be supported not ignored by our government. God be with you too.

Dear saifuddin,
Please don’t give up. You have helped your wife for so many years. We need to live with hope. My prayers are with you and your wife.

Dear mvkulkarni,
So true - we need to share our experiences. It would help us to battle sz. Best wishes to you and your son.

Dear Subimal Palit,
Your son can give private tuitions. That itself is a great achievement for someone struggling with this illness. I can understand your feelings but there is a place for everyone in this world, however imperfect we are. My prayers are with you.

Dear Dinesh,
One of the biggest challenges is acceptance of mental illness.

Posted by survivor at 10:15 PM | Comments (0)

November 10, 2005

Another home - a new life.

It has been many months since I posted here. Months which were periods of major changes and adjustments for our family for we moved home again - in the month of August, a time when it’s not too hot out here. But this year, August was like the scorching month of May - intensely hot and exhausting. As I packed my home yet again in the old wooden boxes and cartons - this time it was with a feeling of deep nostalgia. My husband had retired from the Indian Air Force and we were moving out into a different home and stepping into a new life. I had till now known no other life except this I thought as I packed my old saris in an even older steel trunk which my father had bought for my mother during his days in the Royal Air Force. How would these changes affect each of us I wondered?

As I went through my daughter’s baby clothes and old photographs, I wondered as always as to why I did not see that something was amiss at times and done something then? Why was I not a stronger mother and been more firm with our families as I was now? Especially with the ones that I knew that had hurt my daughter deeply with their careless condescending behaviour and comments. I lacked the courage then to speak up for fear always froze me when I wanted to speak up to the elders of the family that what was being done was wrong. No longer now. Could I have prevented schizophrenia from entering our lives if I had? I do not know.

Whenever we move home which has been often, memorabilia from the past spills out of the old boxes stirring memories and moments of the past - difficult yet adventurous times moving from place to place, making a home - no time to think just work throughout the days and sleep exhausted at nights. But now things have changed. For the past ten years with each change of home comes moments of waiting and watching alertly yet discreetly if the new change of home would trigger the beginning of a relapse. This was after we moved home to a place in Central India - my daughter told us as to how even locating her toothbrush in a different place in a different room lead to a surge of stress which was not within her control. Concentrating on reading the newspaper something which she loves becomes so difficult, she said. Ever since her room is the last to be packed and the first in the new home to be unpacked so that she is surrounded by the familiar curtains, music and books.

Perhaps it was the heat or that I am older, I do things slowly this time but my daughter helps me to settle down in our new home. What made this move so memorable are caring people who came to help us pack and move and loving friends sending us home - cooked meals. Also concerned friends my daughter and I met on the net - living across the oceans - we have never seen yet asking if all was well with our family. For these I feel blessed.

Posted by survivor at 12:02 AM | Comments (2)

June 10, 2005

A birthday

I haven’t posted here for a long time and I didn’t even realise it till two days ago – when it was my daughter’s birthday. She woke up earlier than usual and was so happy to be woken up by a telephone call from an old childhood friend who stayed in a distant town in the foothills of the Himalayas. The friend’s mother who was also my daughter’s teacher wished her too. The day began on a happy note for her and I was moved as birthday wishes came in. Most came from people she had met on the net in the past three years - people with courage, struggling with an illness that had changed their lives. And some wishes were from people she had met last year and shared with them that she had this illness. I am grateful to God when I see people who don’t shy away from mental illness. For there are so many in India, who just cannot understand that mental disorders are just a part of a person and there is more to an individual than the illness. This understanding, I feel is only possible if one has the ability to love without conditions, able to feel compassion and be tolerant. I feel so happy whenever I see these in people. People who respond to my daughter when they see what a kind, loving and generous person she is.

Posted by survivor at 05:21 AM | Comments (6)

April 19, 2005

The Patent Act 2005 - the office of the National Consultant of Mental Health

The National Consultant of Mental Health is a psychiatrist who had earlier been in the Army. He was not in his office. So I was taken to another room of another doctor working under the National Consultant. I was asked to wait for some time. After forty five minutes he spoke to me. When I asked him whether the prices of the drugs for treating major mental illnesses would increase he said that he did not know. I told him that presently, the wide range of affordable drugs were the only facility provided by the government. Probably he was aware that despite the Indian Disability Act 1995 wherein mental illness was included as a disability, the Government had provided no disability benefits, no disability insurance... the inclusion of mental illness as a disability was only on paper. He was very condescending. He said, ‘do you expect me or anyone to employ a schizophrenic with 40% disability? What will that person be capable of doing?’ I felt a surge of hopelessness - a doctor in the office of the National Consultant of Mental Health talking with such disdain! However I told him that I knew several people who were working where the employers had empathy and understanding. When I asked him what steps the government was taking to prevent the generics from disappearing from the market when the drugs were patented, whether newer enabling drugs would be available in India....he kept saying ‘next question’ without answering any of the questions. When I asked him as to who would give us these answers he said no one would because no one knew anything besides he was an ophthalmologist. He said that there was no point in going around and asking any clarifications. I would not get any. I felt horror when I heard those words.

I wanted to cry out aloud ‘Where should I go next? Please help me. Is there no one who cares for these people who suffer so much?’ I knew there was no point. I was at the wrong place. There would only be more scorn. Trying to stay calm I stood up to leave while the doctor looked at me across his table. I heard him speaking ...the budget for the National Mental Health Programme has been increased from Rs.19 crores to 190 crores. Mental health has become an important concern for the Government. We are developing I.C.E packages for bringing about awareness of mental illness in the community...’ What is I.C.E’, I asked? ‘Information, Communication and Education’, he replied. Who were involved in making these packages - I asked. He said psychiatrists and experts. ‘Were families also involved?’, I asked him. He thundered ‘do you doubt their expertise, their qualifications?’ I told him that perhaps he was not aware that most people with serious mental illness in India lived with their families. There are insufficient facilities for hospitalization even when the illness was acute. It was the families who took care of them. Families were the ones who constantly lived with the illness. Families could offer a wealth of information and contribute to these packages. He said, ‘why don’t you submit a proposal? We will look into it.’ I knew it was time to leave. To leave a room mired in insensitivity and apathy, inhabited by creatures of habit. I left the room with these unspoken words – ‘Breathes there a man with a soul so dead...’

Posted by survivor at 02:21 AM | Comments (6)

April 14, 2005

The Patent Act 2005 - The genesis of uneasiness & then the quest

I wish I had written more often - especially in the last three months. It would have eased the weariness, the anger, the helplessness and sadness within, which threatened to overwhelm me during this period. It all began when the patent ordinance was promulgated by the Indian government on Sunday, 26th December amending the Patent Act 1970, in accordance with the WTO (World Trade Organisation). The people of India were reeling then after the Tsunami’s fury. In January 2005, the Minister of Commerce said on television that 97% of essential drugs would not come under the ordinance. Only 3% of drugs would be patented, he said. My family started feeling uneasy and worried. Would drugs for treating schizophrenia be included in the 3%? The quest then began. I contacted the Ministry of Commerce and asked them for the list of 3% drugs which would be patented and the list of essential drugs which would not be patented. I was told to contact the Ministry of Industrial Promotion & Policy. They said they did not know and to contact Ministry of Patents. There I was told to speak to the Under Secretary, ‘the architect of the patent amendment’ as one of them said. The Under Secretary enthusiastically talked about patented software, patented detergents which would be cheaper and available to all in India. When I asked him about the impact on the prices of drugs he said, ‘Most people in India do not have enough food to live on. How could they think about drugs? Food is a far more important issue. Who will worry about medicines when they don’t have food? Have you thought about that...’ he went on and on. When I asked me to give me the list of drugs, he told me to contact the Health Ministry. The Health Ministry told me to contact the Drug controller of India.

The corridors of the building where the drug controller of India sits are dusty and daunting. I was amazed that this gentleman had agreed to talk to me for half an hour for mental illness is still regarded even by the most educated in India - as the result of moral failings or poor will power. Most people do not know that they are legitimate illnesses that are responsive to medical treatment. The drug controller fortunately was aware of the nature of these illnesses of the brain. However when I showed him the difference in prices of the generic drugs manufactured in India with the prices of patented drugs in USA, he was taken aback.(Patented drugs are upto hundred times costlier) The prices of the drugs in USA were mailed to me by a wonderful, understanding mother in Oregon who spent days on the road to get the prices of various second generation patented drugs. I had met this mother on this site and she understood so well our fears. However the meeting with the drug controller did not allay these fears. Although punctual and polite, he looked harried but gave some answers. He said that some drugs will become costlier ... Phase II and Phase I clinical trials are not being done in India... Government cannot buy patents unless there is a health emergency, otherwise it could get into litigation with the drug companies. He got impatient when I repeatedly asked him about the impact of the ordinance on the prices of drugs for treating serious mental illness. It was a strange meeting for a chord was struck when I told him that the legacy we wanted to leave behind was not the same as other mortals – we wanted our loved ones to have access to drugs that would enable them and reduce their suffering. He said that he had a relative who suffered from this illness. The meeting of half an hour stretched to an hour as we talked about a common struggle. I could gather that the pricing of drugs involved six ministries and there seemed to be a lot of confusion since the ordinance had not been tabled in parliament. He told his secretary to take me to the office of the National Consultant of Mental health which was in another room in the same building. This was during the month of January. I shall write about that later for its almost 2 a.m. today.

Posted by survivor at 02:21 AM | Comments (0)

February 08, 2005

A long and lonely trek

It has been a strange year. I wonder if it is a portent of the things to come. More difficulties, additional worries for the future which is already so different from those by the 'normal' people and a sickening fear gnawing within me that those with major mental illnesses like schizophrenia will be banished forever into the dark fringes of society – a return of the Dark Ages of Institutionalization coexisting with the Silicon cities of India.

First, a newspaper report about the price of drugs which would be shortly patented in India appeared in January in ‘The Economic Times’ making us uneasy. This was during the same time when the people were reeling after the Tsunami lashed the coasts of India. The newspapers were full of the natural tragedy and most people missed out the ordinance promulgated by the Indian government amending the Patent Act 1970, in accordance with the WTO (World Trade Organisation), which seriously compromises the accessibility and availability of medicines, two important components to the right to health. The Indian government is going to trade away its rights to protect the public health of people who need access to low-cost, presently available generic medicines. The introduction of a patent regime will also reduce accessibility to new drugs.

As a signatory to the International Covenant on Economic, Social and Cultural Rights (ICESCR) and the Doha Declaration on the TRIPS(Trade Related Intellectual Property Rights) agreement and Public health(November 2001), the government of India is obliged to implement the TRIPS Agreement in a manner, which is supportive to access to medicines for all. Drugs for major mental illnesses are the cheapest in India compared to the rest of the world. Indian drug companies have produced generic versions of all the atypical antipsychotics at relatively low prices compared to prices in USA. This has enabled affordability and accessibility of drugs to all with major mental illness including in government hospitals.

In a country like India, there are over twenty million people with major mental illnesses and more than 70% of them live with their families. The family is the backbone of support and care. Any policy affecting the treatment and healthcare of those with mental illness will also affect the quality of care provided by the families to their loved ones. India is a poor country and people with major mental illnesses in India, have no Disability Insurance or Benefits, no Medical Insurance cover-unlike cancer, no Government programs like Social Security Disability / Employment/Insurance, no Sheltered, Transitional or Supported employment, No Clubhouses for Social Rehabilitation/not enough Mental Health Facilities for hospitalization, few crisis intervention centres and now - no choice for a drug that is crucial to control their illness because they will no longer be affordable. Even Military hospitals do not have provision for admitting women with psychiatric disorders. There are ‘no beds for female psychiatric patients'. The burden of taking care of a family member during acute periods of the illness lies with the families.

The steep rise in drug prices and the consequent inaccessibility of these drugs will lead to those suffering with no alternative but to take the older drugs outside the patent regime. Most families will no longer be able to cope and take care of their loved ones. There will be increased homelessness and suicide. Large numbers will have to be institutionalized. Where I wonder - when there are insufficient mental health centres for taking care of those with acute symptoms?

Imagine what a future we will be leaving behind for our children if they have to take the older alternatives. As it is they suffer so much with this illness and being deprived the right to take a drug which suits them and a drug that could cure them in the future - will enslave them forever to this illness and make them so much more disabled.

Families in Bangalore, more aware of the impending crisis are gathering together - for they have chosen to speak up for their loved ones. As for Delhi, where so much can be done, the curtain of stigma still envelops most families wherein a loved one struggles with schizophrenia or other major mental illness. Like the fog of the winters of Delhi, most prefer to hide behind the façade of normalcy and denial. Most of those that are aware of the nature of the illness prefer to be isolated from such issues. The rich will not be affected as they can afford the high drug prices, the middle class cannot believe the government would do such a thing, so they go about being busy with a false heartiness and the poor do not know what is happening to them for they are already staggering with the vicissitudes of life. NAMI Delhi chapter when contacted for help says it’s new, so contact Mumbai and it only plans to start Yoga classes in the future. For whom I wonder?

It is a lonely trek for some families who want to leave behind a future of - a right to health and dignity for a loved one battling schizophrenia. Trying to keep alive the fervent hope within, that future modern science will bring forth a drug that could cure schizophrenia which their loved ones struggle with. To prevent the drug that enables them - from becoming unaffordable and inaccessible. I know now that it is an uphill, long and lonely road.

Posted by survivor at 11:34 PM | Comments (0)

December 25, 2004

Attitude or ignorance?

Yesterday I went for a dance party which was held in honour of a newly married couple. The groom, a friend’s son, is a software consultant and the bride a clinical psychologist, also a teacher with a post graduate degree in the field of Clinical Psychology. I spoke to this young girl for a while. As the conversation meandered to the area of her work, I was taken aback when she said that she had worked with ‘hard core schizs’ in ‘mental hospitals’. They were ‘beyond any cure’, she said. And she carried on and on about how important it was to ‘locate the root cause of this illness’, ‘how medications needed to be stopped and counselling was the solution.’ Listening to her I felt the sickness of despair welling within me.

I wanted to retort back with the normal arguments which I do in such situations, but I am deeply ashamed that I did not. I don’t know what held me back. Was it because I did not want to make this girl, the new daughter-in-law of the house, disliked initially but tolerated now by her mother-in-law, my friend, uncomfortable? Or was it because I felt horrified at the ignorance and insensitivity displayed by a so called qualified clinical psychologist, who was also perhaps transmitting this attitude, to so many of her students? Or that this girl would be throwing so many people struggling with schizophrenia and their families into further chaos with her counselling sessions?

I feel angry with myself, for not having been my usual self and countered her statements. For according to the p-docs at Safdarjang Hospital, a leading Government hospital in New Delhi, there are one crore Indians (ten million) with schizophrenia and just 3500 psychiatrists who are pressed for time dealing with the wide spectrum of mental illness in this country. It would be so difficult to work in tandem with the clinical psychologists in such a mental health system. I feel sad that I let the social niceties and conditionings overcome me and that I did not speak up.

Posted by survivor at 02:34 PM | Comments (0)

November 16, 2004

My own kind

I could not post an entry here for several reasons. One reason was that I was involved in the setting up of a support group for families battling this illness. In the month of April, I had approached an organization which is based in the UK, for help in the starting of a clubhouse on the lines of the Foundation clubhouse. This organization has a disability wing. The people looking after this wing said that the concept of a clubhouse would be difficult to be accepted, so they suggested that it was better to begin with a support group for families. The beautiful mother I met on this site and I got together and planned out the format for the meetings. The first meeting took place on September 11. We are having two meetings in a month - the second and the last Saturday.
Before each meeting I have been so far going to two government hospitals, two Military hospitals and one private clinic. The first place I visited was the Safdarjang Hospital. I was very nervous before meeting the head of the department of the psychiatric wing. One had to take his permission before putting up the notice for the meeting. I wondered if he would even agree to talk to someone like me, an erstwhile teacher and now just a mother of a daughter struggling with schizophrenia. There were so many families in the corridor waiting to barge in. The door would open and the attendant would allow just one person in. I went in, my stomach churning and started talking. I don't recall exactly what I said but I was taken aback by the warm response. I had expected a curt answer and was all ready to plead but I didnot have to. The p-doc agreed to put up the notice and talk to several families. He also told me to talk to the families who were waiting outside because the notice was in English and some of them would not be able to read it as they belonged to different states and so spoke other languages. I thanked him, gave him the notices and felt so happy when he wished me good luck. I went in the corridor but how could I or anyone differentiate the person suffering from schizophrenia, from the families unless the side effects or the positive symptoms were acute? This was after all - the invisible illness.
I approached a young man and told him about our support group. He smiled and then took me to his wife and his mother and told me to talk to them. He said he had been struggling with this illness for several years. When he was telling them about the support group, I saw the smile vanishing from their faces and shutters coming down in their eyes. I gave them the notice with the map to reach the place where we were having our meeting. I spoke to several families that day. One mother advised me saying that it would not at all be healthy to meet, for talking about it would only increase the symptoms in their child. It was contagious, she said. Another wanted to know if we were offering any free services like looking after patients. One said that the more one talked about such things, the more one would get depressed. Many looked embarrassed. One father looked offended and prevented the mother from talking. One wife was keen to come, but that there was no one to be with her husband, who would often wander out of the house and get lost. Despite, so many different feelings being expressed that day, I felt so connected to all those people. I remembered what I had told my husband, two years after my daughter was diagnosed with schizophrenia- I want to meet my own kind. He looked puzzled then, and asked me as to what I was talking about for after all we had our families. I found it so difficult to explain it to him but after the first support group meeting in September, I know now - that he understands.

Thank you for your comments
Dear Moeder,
Thank you for your greetings, encouraging responses and your kindness. I received all your mails. I mailed you from Bangalore. I hope all is well with you and your family. My prayers and love to you, Cassie and all the members of your family.
Dear Alex,
I shall be mailing you. Thank you.
Dear Penny,
Thank you for responding. It must be so difficult for you to struggle with this illness on your own. Human nature seems to be the same everywhere- the shame and the stigma. May God be with you.
Dear Helen,
I do remember you. I hope you had a good time in China. Thank you for your prayers and birthday wishes. Wishing you happiness in whatever you endeavour.

Posted by survivor at 01:23 AM | Comments (0)