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 November 16, 2004 01:23 AM