My only regret is our lack of awareness

A caregiver recounts his mother's long battle with schizophrenia

Abhinav Gulechha

It all started somewhere around 2000 when we were in Jodhpur, Rajasthan. I had just finished my 12th standard exams and had made my first steps to college; I also enrolled myself for in a chartered accountancy course. We were a small middle class family and had faced quite a tough life starting with the early demise of my father in 1989. My mother raised me and my sister in New Delhi all by herself, working as a teacher in a school. There was no support from the relatives.

Mom did not have a history of mental illness, although when we were kids, she had this problem of repeatedly checking whether the house was locked properly, or if the knob of the stove was switched off. Only much later did we realize that it was known as Obsessive Compulsive Disorder (OCD).

Coming back to 2000, there were days when mom would tell us that she heard noises in her head, and felt that someone was speaking to her. At first, we couldn’t understand this and were scared. She even called the police once to check if there were any devices planted at home. As time passed, it started to become routine for her, and she started to become one with those voices by nodding and responding. As children, we had never heard about schizophrenia and couldn’t have dreamt of such an illness afflicting my mother. So, we thought that it would all go away. However, it only got worse.

As days passed, mom moved a step ahead and started to act on the instructions of those voices, asking her to do this and that. Sometimes the voices asked her not to eat, sometimes they asked her not to sleep, or worse, that someone wanted to kill her, or that she was Hanuman (an Indian deity). Slowly, the voices started to overpower her. Being children, we were bewildered by what was happening. We could not expect any support from relatives having had a bitter experience with them in the past, and we were not inclined to approach the neighbours either. Being an introvert, I did not have many friends with whom I could open up and share this problem. 

Many a time, I tried to bring sense to my mom the way a parent scolds a child. I wanted her to come out of this, but by then things had really gone out of hand. Mom started to really believe in the voices and did not listen to me at all;  now I think maybe she was not in a position to do so. She would not eat, or ate only as much as the voices ordered (which was generally not more than half a chapati); she started getting weak and her bones started to show.  

One day she started throwing the utensils out of the house one by one. It was then that an aunty from the neighbourhood couldn’t hold herself back anymore and sent her daughter to discuss it with mom. As we opened up to them, we were inviting more trouble (as we would later realize). The lady had a group of friends who got together for kirtans. Since they were as ignorant of the illness as we were, the ladies concluded that it was a case of some bad spirit having possessed my mother’s body. And then began a series of visits to ojhas and babas. So we had these weekly visits to a babawho addressed large gatherings, and gave a bhabhutithat was supposed to cure any illness.

But it did not. And visit after visit, my mother’s condition worsened. Someone asked me to consult an astrologer who told us it was happening because of some pitr doshand I was asked to do a puja. So I complied and went to Pushkar, Ajmer. In the holy pond as I was doing the puja, my foot slipped and since I did not know how to swim, I nearly drowned! That was as close a brush with death as it could get!

Then, something happened that just pulled the lid off all the nonsense that was happening. One early morning, I found mom taking a sip from a bottle of phenyl. Shocked, I asked her what she was doing and she replied that the voices were asking her to do it. I immediately rushed her to the hospital where the liquid was pumped out of her body and by the grace of God, she survived.

And so enough was enough. They say the night is darkest just before the dawn. One of our relatives suggested that I take mom to a psychiatrist. In hindsight, this was divine intervention. Without delay, we took her to one. The first consultation was an hour-long session, where my mother vividly recalled all the experiences in the past year or so: the voices in her head, feeling like someone was crushing her veins. The doctor seemed like a godsend and very sensitive to our pain. He prescribed a course of medicines to be started immediately.

To everybody’s relief, there was an immediate effect of the medicines. The voices in mom’s head subsided, her appetite returned and she resumed her normal life; she became active in household duties, and we even started spending time with the neighbours who had come to our rescue when there was no help in sight.

15 years on, and my mother takes medicines to this day and the illness is under control. There have been ups and downs along the way, but none like the ones we saw in the tumultuous phase of 2000–2001. My only regret is our lack of awareness that caused the delay right from the identification of symptoms to the starting of medication, and which could have made a material difference to my mom’s condition.

Also, having gone through the ordeal myself, I realize that the family of the patient also goes through trauma along with the patient. So, caregivers also need some kind of a support group where they can share their painful experiences and feel better and stronger to face the challenges in front of them. People need to recognize mental illness just like any other illnesses such as heart disease or Parkinson’s, and allow those suffering from it or their families to speak about it freely. Only then we can stop its ill effects.

I will conclude by telling you that in her college days, mom was known as Rani Lakshmibai, and I can’t agree more. She has been facing and is still facing the worst battle of her life like a warrior, never giving up. And the biggest thing she has taught me in the process is her life’s philosophy, summed up in just two words: “himmat se”(“be brave”)!!

Was this helpful for you?