A Mother in India

Derision and empathy

Is the only way to feel empathy towards someone afflicted with Schizophrenia is living with that person? Why is that not so with any other illness or disability? Why is there derision when one talks about the mentally ill? Is it ignorance or do the people who deride lack the capacity to understand or feel empathy?

'The invisible disability' about which there is no awareness at all. And we who live with Schizophrenia are the chosen ones who not only have to help our loved ones battle this illness but also undergo torment when someone derides them.

Yesterday before leaving Bangalore I visited someone who related what a close member of the family had derisively commented on my daughter. I felt pain and anger because this family member had a disabled daughter yet she felt no empathy for mine. I had explained about the illness to her when I had met her three months ago. I thought that she understood. Why then the derision?

I come home and my daughter tells me about my two friends who have been very helpful to her. One of them has been very understanding too, she says. They know about her illness, try their best to understand and feel so much of empathy.

Strange are the ways of the world. Derision from family and empathy from friends.

Thank you for your comments.

Dear Puzli, So good to know that you are feeling better. I am in Delhi and I look forward to meeting you and Monica. Till then... hugs.

Dear Nick, Thank you for your response and encouragement. We can make some people understand and they are those that matter and make the world a better place. My best wishes to you and your family.

The future will always be uncertain for all with or without schizophrenia.

I am writing this entry from Bangalore and have been here for two weeks. I haven't written for so long and I missed it so much. Putting into words about what I felt and couldn't speak for so many years was like letting free a bird which was trapped in a cage.

And today has been a perfect day spent with an affectionate niece and an old loving friend and her family who try to understand this illness when I tell them about it. A day that will be imprinted in my mind to recall and relive. I feel a sense of gratitude when I am blessed with such moments.

So far for the past eight years, close to the twenty first of March, a storm of feelings rise within me which threaten to engulf and put me in a stupor. This was the day, eight years ago, when my daughter was diagnosed with Schizophrenia and on this day she started taking medications. I relive the moments, the living with this illness and the knowledge that life henceforth will not be a predictable one. But then, can the future ever be prophesied for any one? The future will always be uncertain for all with or without schizophrenia.

I feel hope this year because my daughter is able to take care of herself, our two cats and also cook while I am away. These may be normal activities for the normal people. But for her I know now they require a great deal of effort. The thick veils of ignorance about mental illnesses which clouded our lives in the earlier years have torn with the knowledge we have gleaned. Knowing about the illness and its symptoms makes it so much easier too to communicate with the p-doc.

Fortunately the present p-doc, the seventh one so far, is understanding. The last three years we have been going to the same p-doc who has kept abreast of the latest medications and other developments in Psychiatry in India. He is in private practice. He is always calm, speaks softly and listens. He is not patronising and never in a hurry. He does not get offended when we ask him something. My daughter is able to talk to him. His clinic is a small room with adjoining waiting rooms where patients and their families wait their turn. Sanskrit chants or instrumental music is played softly in the background. I have seen a man hectoring the nurse to hurry his turn, quieten after sometime.

Earlier families used to sit with averted eyes, some reading, some conferring with their families in whispers and some sleeping while waiting their turn. In the last one year, I have observed a few families interacting talking about the illnesses they were dealing with. So the reluctance to talk about such illnesses will slowly disappear.
Its now two in the morning and the mosquitoes are on a biting spree. They are tenacious. I shall continue later...

Thank you for your comments.

Dear Nick, thank you for your response. My prayers too are with you and your family.

Dear Puzli, thank you for responding despite being not too well. I hope you are feeling better now. Hugs to you.

Dear Helen, thank you for your encouraging words and your prayers. Yes everything does happens for a reason. I told my daughter about what you had written about being beautiful. I wish you contentment in whatever you strive for.

Dear Christy, thank you for responding. It must have been so much more difficult for you to grow up and live with this illness not knowing and not able to understand what it was doing to your mother. You were so young when it happened. Please do not be harsh on yourself. My prayers are with you and your family.

Seven p-docs in eight years

My daughter till now has been treated by seven psychiatrists in the last eight years. Three of them were from the Military hospital. The hospital is located in the Cantonment area of Delhi. It is an oasis of greenery where peacocks strut with peahens on the slippery, asbestos roofs of some wards. My daughter was born in one of those rooms. Twenty years later, while my husband drove past the place where she was born, taking her for her first visit to the Psychiatric Section, I remember thinking how unjust it was for someone so innocent, so good, so kind, so wise and so loving like her to suffer so much. Who could I rant against? Fate ?

The first visit led to her diagnosis and treatment and recovery. So was it a kind of being reborn in the same place? I wonder. A different life thereafter, a difficult path to tread on, an unconventional way of looking at life's challenges where small achievements were equated with a great deal of hope.

Since my husband was in the Indian Air Force, stability in treatment and environment was so difficult! Either the doctors were transferred or we were. The first p-doc at the Military Hospital was good and competent. Another one was condescending and cruel. I recall telling this p-doc about her reluctance to take her medication because she had put on so much of weight and his reply 'let her not take it. Let her suffer. She will come to her senses and then start taking them.' When refusal to take medication is one of the symptoms of the illness, how could he have ever said something so bizarre? There was no place where we could air our grievances because psychiatric patients and their relatives were not taken seriously. A patronising tone was used with the patients. There was a beautiful garden in front of the p-doc's room where some of the patients tended to the plants. On the grass lay sprawled tired families who had come a long way from other towns because few hospitals had psychiatrists. I recollect a painting of a house from which led a winding path, hanging on one of the walls. Underneath which was written 'Home is where they have to take you in when you have nowhere else to go'. I had read these very words somewhere, sometime, I don't remember ...a long time ago. They didn't tug at my heart then but now they do.

We took her to the same place after her first relapse and came to know what the word 'remission' meant. She was put back on Haloperidol. Her recovery took longer and we moved our home to a town in Central India because my husband was transferred there. The town had a Military hospital but no psychiatrist. Fortunately a good friend lived in the same town and they told us about a 'good p-doc' in private practice. A week after we moved, my daughter started relapsing. So we rushed her to this doctor. He had his rooms in a huge building where doctors of different specialities practised. He was our sixth p-doc in three years. We stayed in that town for two years and we found him quite understanding and easy to communicate with. He looked so weary - most of the time. He used to start treating patients from nine in the morning till late in the night. His charges were affordable and one had to come a couple of hours early to meet him. We spent a lot of time in the waiting room. His patients were so varied, the rich, the poor and the middle class all awaited their turn. The waiting room was comfortable but it had a television set showing sometimes violent movies.

My daughter later told me that she used to sometimes feel guilty talking about her feelings of depression to the p-doc especially after seeing some really poor peasants who came in with dust- encrusted feet, nut brown faces etched with lines of toil and clothes crumpled after a long journey from some far-flung village. Generally there is so much of superstition regarding mental illnesses in the villages, but I found a lot of people from the villages in that room. Talking to
some of them, I was amazed by their attitude. They said that they were not well, so they couldn't work, hence they had come for treatment to get well to earn something or to look after their families. No formal education but so much of awareness! Some of the patients or families whispered to each other but most of them kept quiet while a few read. This p-doc prescribed SSRIs alongwith Haloperidol to ease some of the symptoms. He was the first p-doc to tell us never to take the threat of suicide lightly. So we used to lock up all the knives, scissors..and take turns sleeping on a mattress on the floor next to her bed whenever she felt very depressed or was very ill.

Although she recovered, she remained unhappy about the weight she had gained. The p-doc changed her medication to Loxapine. She relapsed again. Later she told us what a frightening period it had been. Her mind
being constantly bombarded by unhappy memories of unkind people criticising her and remarking unpleasantly about her appearance or abilities. It was like a deluge, she said. The p-doc put her back on Haloperidol and she recovered.

She recovered so well that she took charge of the home while I went to hospital for yet another operation. I returned home and there were so many restrictions that I had to take a lot of rest. It was amazing the way she went about doing the chores and cooking the most delicious meals. My husband used to help her out occasionally. In the evenings she would go to work. I will always feel indebted to her and remember that time with gratitude. It could have been a terrible time but it turned out to be such a happy one!

By then the Internet had come to India and to this sleepy town and so much of information was available. We discovered this wonderful site and found a great deal of comfort when we knew that we were not alone in this battle with this illness. We remained in that town for two years and then had to move home yet again because my husband was transferred, this time to Delhi. Shall write about that later...

Thank you for your comments.
Dear Moeder, you speak with so much of wisdom. How true that we cannot take away this illness from our daughters...we can only help. Thank you especially for telling me to be good to myself. I just did. Yesterday was Women's day so I went out with a friend for a movie, and had my favourite icecream. You too take care dear mother.

Dear Nick, yes a lot of loving and caring does help. Thank you for your response.

Dear Monica, My daughter was also diagnosed when she was twenty years old. She was on 600 mg of Quetiapine (200mg in the morning and 400mg in the evening) and 2.5mg of Haloperidol till last week. About two weeks ago, since she told the p-doc that she felt drowsy during the day the dosage was adjusted (100mg in the morning and 500mg in the evening). She started relapsing and although she went back to the previous (200mg morning, 400mg evening) she didn't get better. Apparently the action of Quetiapine does not last for more than seven hours for some people. So now the p-doc has stepped up her medications. She is now on Quetiapine (300 mg in the morning 400mg in the evening) and 5mg of Haloperidol since yesterday. She is improving. Do talk to your p-doc for adjustment of dosage for your son if he is still troubled by the symptoms. Dosages do need to be adjusted from time to time. Thank you for your response and do take care of yourself dear mother.

A voyage of discovery

Thank you Moeder, Anonymous and Nick for your comments.
Dear Moeder, your caring and loving words are so soothing and comforting. Yes we have so much in common, a daughter battling this illness. I too shall remember you and your family in my prayers.
Dear Anonymous, so good to hear that you are doing well despite the illness and the difficult time you went through.Yes, Mental Health facilities out here are not meeting the requirements of the people. We have barely 4000 psychiatrists for more than a billion people. We have a long way to go.
Dear Nick, I was so happy to read that you could stand up to your in-laws and go ahead with your wife's treatment.

I never would have imagined that strangers could bond, connect and understand. But then we who live with Schizophrenia are one-of-a-kind, be it, the ones battling with the illness or the care-givers or the families who are encompassed by helplessness and torment. Living with this illness has been a voyage of discovery which has made me, hopefully less critical and more compassionate. I am so sure that if this illness had not touched me I would have tread the 'normal' path where my happiness would have depended on the gratification of my expectations.

Ignorance breeds fear and knowledge brings with it understanding and power. However I discovered that the knowledge of the illness can bring about intense pain too, especially when I watched my daughter going through the first relapse. I knew then that the illness would be chronic. I knew that this was not something which would vanish. It was here to stay.

While my daughter was recovering from the relapse, I met with a very bad car accident and had to undergo a brain surgery. I remember praying to God to give me some more years to take care of my daughter and son. After the surgery, I remember wanting to move my hand and not being able to. I was one of the few lucky ones to recover and regain all the functions which I had lost, said the neurosurgeon. The blood clots had shrunk the brain and the skull had started fracturing when I was operated. I was in hospital for over a month. Two of my neighbours rushed to help us. My son then was appearing for the Entrance exams for Engineering. These wonderful ladies cooked meals for my family, listened to my daughter when she felt anxious and visited me everyday at the hospital. I am sure they knew that something was not quite allright with my daughter but they never ever said anything. One of them used to sing songs in her language at my bedside while the other transalated. This love from these strangers encompassed me. It washed away most of the bitterness I felt towards my parents.

After undergoing the brain surgery and while recovering, it dawned on me that my daughter was going through a great deal of suffering much more than ours. The brain is the master of the body and anything going awry manifests itself in so many different ways. We had to help without reacting to her behaviour. We had to keep our emotions aside and identify and understand the symptoms. We had to love unconditionally. This revelation hit me six years ago.

I remember an incident when my husband visited me at the hospital. I scolded him for not getting a towel which he had forgotten and I noticed that his pants were falling off. Just when I was going to tell him to tighten his belt, I saw that he seemed to have lost a lot of weight. When he weighed himself he found that he had lost nine kilos in a month. I also realised that most of the time I was so overwhelmed with this illness that I was taking so many relationships for granted. ..with my husband, my son.. My father's friend who stood by us used to often tell me, 'Don't neglect that boy (my son), hug him and take care of him too and always count your blessings...'

For two years I had been so consumed with the struggle with schizophrenia. Perhaps it had to do with what I had read in books written by A J Cronin, Agatha Christie and many others about people suffering from mental illnesses. Once they had it, they succumbed and were banished to institutions never to be seen again in society. They were visited and looked at with pity. I did not want that to happen to my daughter.

I have digressed writing about the treatment after the relapse but shall do so later...