March 03, 2004

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...

Posted by survivor at March 3, 2004 02:24 AM

Comments

Your writings touches me very much. I realize how similar we all are no matter where we live in the world. When tragedy and sorrow hits a family in India it is no different than when it happens to a family in the USA. We're all human and can feel so much pain, especially when our children are hurting and suffering.

More than anything, I wish I could take this illness away from my daughter but I don't have the power to do this, so as a mother I do the best I can to help her. What this illness has taught me more than anything is humility. Life can be so sweet and grand and suddenly one can be struck down with such sadness and sorrow. It makes me appreciate all the good things even more. I want to believe there is a reason for everything that happens to us in this world... I don't know for sure what it is... but I'm sure the creator knows the answer even if we don't.

Take care and be good to yourself. There are many people reading your journal and praying and thinking of your family.

Moeder

Posted by: Moeder at March 3, 2004 12:17 PM

I regularly see ur words and go thru it again & again.Life is beautiful and it is also irony that next moment it can be full of sorrow.U rightly said about no. of psychiatrists. and out of it how many are competent to deal with it, just fractions. I know one surgeon, unfortunatly he met an accident and gone thru operation. when I went to see him, he told that he had done lot of operations but how difficult is to go thru it.........I realized only when I was in that position.............
Similar is with most of psychiatrists ......they only listen to patients but have never really about SZ or similar diseases. I only want if they partially feel the pain the treatment can be better.
I agree that for medical treatment one can be admitted to hospital or insitition but moral support is must and it can be given at home only. I have recently saw TERE NAAM starring salman khan......he got mental mishap.......how the charming boy changed into.........and how the families suffered......it had been better if his brother & friends had closeness to him irrespective of his location.

I don't want that they should be just looked at with pity........what they need is EXTRA CARE & LUV....................

regards

Posted by: Nick Arora at March 3, 2004 01:32 PM

hello there, my name is christy and i have just read some of your entries, i am the 5th of 6 kids who have a mother with this illness. my sister is writing about it on this site as well. i had no idea that there were other people out there that may have gone through and are still going through some of the things that my family has. we no longer have contact with our mother, there are to many reasons to list as to the why of this, but suffice it to say that denial and ignorance has bred nothing but fear and hate, not to mention shame as to what has happened with our family in the past. we are all past the hiding stage and talking about it with each other and other people, it has helped but it will always be something that we have to live with. i wanted to tell you that i respect what you are doing and wish that i to was at that stage. always be honest and never hide what is happening to you from your family and be there for each other, god bless.

Posted by: Christy at March 13, 2004 12:58 AM

Hi- I really enjoyed reading about your struggle with your daughter. I am sorry for all the suffering you have gone through but it is obvious you are doing a great job with her and your family. I have 3 kids I know in India and have gotten a love for the country, and it seems it is very family oriented there. Thanks for writing, it helps to know I am not alone (I have sz)
Rachael

Posted by: Rachael at March 30, 2004 11:27 AM

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