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Last Sunday probably was like any for most people. A hot summer day in a city that seemed bleached and exhausted as a blazing sun shone relentlessly from a clear blue sky. For me it was a special day. I met two people. One, a petite, beautiful mother whose son was struggling with this illness and the other a young soft-spoken man who was courageously coping with the illness that had touched him.
We met at the mother's home and as the mother and I exchanged our stories they seemed so much the same - the tumult , the uncertainty and the fervent hope. The young man joined us later and as we sat together and spoke I felt like a link in a chain which joined me to them.
There was no need for inane speech to fill time. Whatever was spoken was understood. We had been through a similar journey in our lives which connected us. The invisible illness did have the power to bind us with the invisible strands of our similar experiences.
Later the young man was kind enough to drop me back home. I invited him to meet my family. He came in and met my daughter and my husband. My daughter was for the first time in her life meeting someone like her who was battling this illness.
The beautiful mother, the soft-spoken young man and I were three strangers, combating the same illness while living in the same city. I doubt we would have ever met at all if it were not for this web site. We met last Sunday. It was a special day and hopefully a beginning.
Over the years, after my daughter's diagnosis I slowly realised that there were some relations who had mental illness in both my husband's and my family. I was curious to find out whether there was any pattern in the way it appeared. I also wanted to know as to what happened to those that fell ill then. Who had taken care of them? What had happened to them? I thought while finding about them and talking about it would make the elders of the family aware of the illness so that those who were now alive and affected were not branded 'fat and lazy' or 'unkempt and restless' or 'so religious' or 'so suspicious' and so on. I wanted to make them aware that these were symptoms of an illness which could be brought under control with medications. I wanted to make them understand that it was an illness like any other. I also wanted that they be compassionate towards my daughter.
Perhaps when they understood they would know that the chances of the future generation getting it were high - something which was not under their control but they would advise the younger generation not to have very high expectations from their children or try and control the lives of the children. They would advise them to just love their children for what they were and not base their love on academic achievements, physical appearance or anything else. Perhaps then the children would not have to deal with these stressors.
So when I went to my home-town, last year, I visited an aunt whom I loved and with whom I could speak freely. She is ninety four years old. She would know about my great grandfather. She did not have children. She lived alone taken care of by an old domestic help. When I went there I found that she had lost her hearing completely but she could speak. She lived in a world of silence but there was so much of serenity writ over her face. The old help wrote the questions I asked on a sheet of paper. Aunt read it slowly and answered them. My great grandfather had suddenly become very religious and started neglecting his wife and three daughters. My grandmother was his second daughter. When confronted he would become violent, she said. After some years his wife could no longer cope. So he was sent back to his family - his parents home. Then his wife, great grandmother started living with another man. There were two more daughters. She did not know what had happened to great grandfather. Probably his family would have taken care of him she said. Great grandfather's parental home was in another town.
So I have to make another visit to continue my quest.
Thank you for your comments.
It must be so painful for you to see Cassie's sisters in denial about Cassie's illness. We both live in different countries but the pain and challenges we face after the illness has touched our lives are the same. You have so much of faith. I am sure Cassie's sisters will understand. It may take some more time. I remember you in my prayers dear mother.
You were so fortunate that your father understood. I hope your wife's parents too understand some day and be a source of support for you. My best wishes to you and your family.
The days are getting hotter and soon the summer will be on us. The parching dry heat and the dusty days. There is always something poignant when the seasons change although the cold has fled and the days are sunnier . But then change is inevitable and the only eternal constant in our lives.
Our lives changed after schizophrenia. Perhaps it would have changed in a different way if this illness had not touched our lives-no one knows how. But one thing I know for sure. The relationships which have been forged with some wonderful people after they knew about my daughter's illness and the few relationships that have endured after the knowledge of this illness are the only ones that matter in our lives.
Every year, before my daughter fell ill, for two months, we went for a holiday to our home-town, a coastal town in Kerala. Most of the time was spent in a frenzy, visiting my husband's and my relatives. During these visits sometimes inconsequential banter was exchanged and sometimes civil rebuttals had to be rehearsed to fend off nosey queries. We had to often politely listen to malicious gossip. Sagacious or impractical advice on how to lead our lives was also offered by the large number of elders from both sides of the family. We were brought up not to confront or argue with the elders of the family. So we kept quiet.
After schizophrenia my husband and I have visited our home-town seperately as one of us had to be with our daughter. Our children do not want to go there any more. The visits are shorter and are usually made when one of our aging parents fall ill and need us by their side.
My husband and I have tried so hard to make my parents and his family understand this illness so it be treated like any other illness. It is like hitting your head on a wall crying to be heard while people walk past not seeing you. I remember my husband sadly telling me after the first visit, 'I dont think they will ever understand until they live with it.' He said that we were blamed for encouraging our daughter to study in a reputed university which she had gained admission to, on her merit. She should have studied in the home-town with her grandparents, then this would never have happened, they said. He had to hear the constant refrain- 'marry her off, she will become better'. I then resolved that I would try and make our families aware of this illness.
Knowledge gave me the understanding of this illness. So I went on my first visit armed with print-outs of material from this web site and others which scientifically explained the illness. First I gave it to my mother. She said she would read it later and then give it to my father. I then went to my husband's home and gave the material to my sister-in law to read. My father scolded me harshly for having given the material to my sister-in-law. 'What would they think? You should never have done something so indiscreet.' I tried to tell him that it was like diabetes which he had, an illness, a treatable illness. Besides medications, my daughter needed loving unconditional support from the family. I dont think he listened then.
At my husband's home I noticed that the topic of my daughter was discreetly being avoided. I wanted to scream aloud why dont you talk about my daughter's illness and that I was not ashamed of anything when I heard the various anecdotes of the achievements of my children's cousins being narrated. But the years of conditioning froze the words on my lips. I can recall the weariness seeping into me when I heard from my mother later that my father had burnt all the material on schizophrenia because he did not want such things lying around the house.
There was sorrow then but no longer now. I understand now that they were in denial. Parents and elders whom we look up to are created with different traits like any other. After eight years, at my husband's home, two of his sisters and a brother understands. That is enough. My mother can understand and my father is trying to. I can use the word 'mental illness' and 'schizophrenia' without them flinching. So there is hope.
Thank you for your comments.
Dear Forrest Grump, Thank you for those words of praise. I wonder if I deserve them but I am so honoured to be compared to your mother - a mother that you love and miss. You say you have to carry the cross. So someone you love has this illness. We can make our cross lighter when it becomes heavy by just living each moment. My prayers are with you and your family.
Dear Autumn, Thank you for responding. I am sorry that your grandmother cant remember because she is ill. My best wishes to you.
Dear Nick, Thank you for your response With so much of research being done on the brain I pray and hope that better drugs will come to combat this illness. As always my best wishes to you and your family.
Dear Moeder, I thought I was the only one in the quest for the roots of this illness and how it came to my daughter till you responded. Strange that both of our great grandfathers had it too. You are so right about shame and stigma. I hope with time it will vanish. Dear mother my prayers too are with you and your family.
After my daughter was diagnosed with schizophrenia, it took some time to reach the stage of acceptance. During the periods when her concentration vanished and the symptoms returned with a vengeance, I knew that our home had to be peaceful and we had to go about our daily routine, speak softly and avoid making noise. One of the p-docs had told us about sticking to our regular routine and the rest -well, it came after watching her reaction to the various stimuli. The television set was not switched during these periods. Although I was fond of reading, initially I used to not read during this time as I felt guilty and frightened that my daughter would resent it. I used to take turns with my husband sitting next to her waiting for her to fall asleep or just sit near her when she wanted us to. So there was a lot of time to think.
I thought about the way I would live life if given another chance. Perhaps I would have been more firm? And made a home with more stability and reduced the accompanying strife? It went on and on. I had to constantly reassure myself that I had done my best and shake off the mantle of guilt that constantly threatened to put me in a state of gloom.
I also thought about various family members. A cousin brother who was not working, staying at home with his parents and who kept to himself. When we visited his mother, sometimes this cousin would come down the stairs, ignore us and go the dining table and eat his meal. His mother would always whisper that he was on a spartan diet either of milk products or pulses. I wondered-was he afflicted with this illness? I also thought of my aunt, my mother's sister and her youngest daughter, a cousin I always liked. My mother used to whisper that she had been taken to a psychiatrist after a bout of jaundice. Apparently the p-doc had said that she was not to live with her parents. So she went to live elsewhere my mother said with an air of satisfaction. This happened more than thirty years ago. This cousin had once told me about some moments during that period of her life. One of them was that on her way to college, she often stopped on the way because she could not remember whether she was going to college or returning home. She often felt confused and disoriented. I could not understand then. My aunt passed away eight years ago. I wished that she was alive so I could tell her that I understood her pain. She used to look so anxious and tired most of the time.
I also thought of my late Grandmother. I had loved her dearly. She was reluctant to talk about her father whenever I asked her about him. She used to say that she was young when he died and could not remember him. I recall whispers of an uncle telling someone about how Great Grandfather had completed his graduation from an eminent University in another town when he was just thirteen years old. He came home, got married, became very religious and sometimes was shackled in chains. I remember the chill sweeping over me when I heard it although I could not understand.
There was so much of time then to think and so many puzzling things fell into place.
I shall continue later as it is almost four in the morning.
Thank you for your comments.
Dear Nick, Thank you for responding. My prayers to you and your family-keep up the strength and the love you have for your family.
Dear Helen, Thank you for your comforting response. I shall try and get the book by Rick Warren. Yes one should always rely on God and pray for stronger shoulders not a lighter burden. Wishing you happiness.