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Submitted by PatientsEngage on 18 May 2016

SCHIZOPHRENIA AWARENESS WEEK 2016

Mahesh (name changed) was caught unawares by schizophrenia which rendered him unsuitable for the world outside and for all those parameters which tag a person ‘normal’. He was unfit for school, for friends, for academics and for competition of any kind. Rudderless as he was, SCARF provided him with that much-needed cushion to re-discover himself and find his comfort zone. He recounts his fight here and how he managed to come to terms with it.    

I am indebted to SCARF for what I am today. I am also thankful for this opportunity to tell you my story. There are times when you have to compromise with life in order to accept the truth. The truth is that everyone has problems. It is important to be persistent about finding the root cause of the trouble and then addressing it appropriately. This effort eventually leads to the problem being solved, bringing about a peace of mind.

I have been born and brought up in a middle class family which, I guess, could be called a normal family, just as you would find so many others in this country. We in the family may not communicate on a regular basis, as we are all busy in our own ways. But the love and affinity for each other still remain strong. We may fight, but we also forgive easily. Yes, we are a very sentimental family. Especially when problems strike!

Let me share with you my story of Schizophrenia, as I experienced it and continue to experience it…

It all started when I was 13 years old. My parents had been pestering me to join one of the leading schools in India, located in a posh locality in Delhi. For three years, I had been fervently seeking admission in this up-market school, despite my weakness in Hindi. I failed the admission tests to this school all three years and suddenly in the fourth year I succeeded. This admission proved to be unfortunate for me, as it proved to be a dark period of my life. This prestigious school boasts of a football ground, swimming pool and squash court – part of the long list of facilities enjoyed primarily by those students who were branded ‘bright’, in academics or sports. But my teachers considered me weak and meek. And I could never shake off the feeling of being isolated by them. Most of the students scored average or above average marks and I could never manage to be in their category at all. I was sidelined in the classroom and was often sent out of it. The ‘bright’ students were so indecent with me that they would not even hesitate to use offensive language with me. I often wondered that to be a part of that exclusive group, I would probably also have to develop a similar vocabulary. 

It was then that I became sort of obsessed with smiles and passes that the girls in my classes bestowed upon me. They would tease me freely which I would imagine to be attention being extended to me. I thought they wanted me to be their friend as also a part of the school community. How naïve I must have been then! The time for school homework was replaced by this obsession. I seldom used to talk to anybody, though I attended school regularly. My parents did not have an inkling of what was wrong with me, although my father used to say that I had to break out of my shell.

The chain of thoughts continued unabated and I never used to speak my heart out. A storm kept building inside me, only to be released periodically whenever the pressure became unbearable. I was never aware of these periods of outbursts; I never knew how to take it easy. No one in my so-called close-knit family realised that something was wrong somewhere! A psychiatrist, Dr Rajesh, who was also a family friend, explained it away as an “adolescent crisis”. If only Doctor Uncle had listened to me then! 

Come to think of it now, the next six years were ‘hell’ for me, almost like a robbed childhood. The so-called friends in my residential area, apart from my classmates in school, also played a leading part in ruining my life. They continuously ragged me for six long years. Again, I never complained to anybody, not even my parents. People took me for granted. I was deliberately cheated by my friends in all the games that I used to play with them. I started thinking that they planned to conspire against me, to cheat me in every game. You might ask me why I continued to be with them. It was because of Sunitha, a charming girl in that group, who used to be sympathetic to me. Each night I would think of Sunitha, her bubbling enthusiasm, the sweet ‘hi’ she used to greet me with, the attention she would shower on me…all this was really very heart warming. I do not know if it was all an imagination or an infatuation of sorts, but I will remember Sunitha with sadness for the rest of my life – Sunitha, who was never destined for me. She came, she saw and conquered … my heart.

I don’t remember when exactly I started hearing people talk about me. I would hear voices of those so-called ‘friends’,  teasing me about my obsession with Sunitha. I wondered how they came to know about it.  I had not spoken a word to another living soul! But know they did! Could they read my thoughts? This idea soon became a reality in my mind. I refused to venture out, for fear of my mind being controlled by external forces. But believe me, that did not help. The voices pestered me within the confines of my room… they worsened as the days went by. Perhaps around this time, my family realised that something was wrong. I remember my mother telling Dr Rajesh that I hadn’t got out of my room for two days. I thought – don’t they know that I have been hearing people talking about me for a long time? Dr Rajesh had a long chat with me (in my room, of course!).  My family soon started giving me pills, presumably because doctor uncle wanted me to take them. I thought why they were putting me to sleep with all these drugs. Why can’t they just tell those people who keep talking about me to shut up? 

It is hard to recall exactly when I joined SCARF. It was more than six years back. I had lost all hope, wondering what normalcy was all about and crying with all my heart in search of freedom from my own thoughts. That is when I discovered an institution called SCARF and it was in SCARF that I was born again. Thanks to Dr Rajesh, I was brought here by my parents for, what I was told, specialised care. I was to stay there at what they called a “community home”! Looking back, this was the turning point in my life. 

The doctors and social workers at SCARF cajoled me and reassured me over and over again that everything shall pass. And pass it did. It was a bad phase and I never looked back again. To live it, you have to fight it” -- that was what SCARF taught me. At SCARF I  could freely talk about my thoughts, my voices, my pre-occupations, my need to be free from this nightmare and even my dreams for the future! I learnt the value of medication. I learnt how to cope with minor side-effects. Above all, I learnt that Schizophrenia was a disease of the brain, a medical illness, a problem that could be sorted if one acknowledged it and got it treated.

I absorbed myself in all the activities at SCARF. I really sweated it out. By the time I reached my home (the community home was now a real home for me), I would put on the music and then doze off to a well-deserved sleep, to wake up in the morning to face the fresh challenge of the day. Not to forget my aunty (the cook who took care of our gastronomic needs) who used to pack different delicacies for lunch everyday. And the pangs of hunger I would feel from the laborious activities that I used to undertake, would actually make the lunch taste even more delicious. 

I stayed at the centre for about 18 months, a fruitful turnaround period in my life. When I left SCARF for my home in Delhi, the doctors told me to continue with physical and laborious activities for some more time. And what indeed could be more healing than working as a gardener in a nursery? I, in fact, took it in my stride when my father suggested that I spend a few hours everyday in the largest nursery in Delhi. The environment in the nursery was so serene and soothing that I enjoyed going there everyday. Initially, I just walked barefoot on the fertile soil in the nursery, spent some time under the trees and simply enjoyed the scenic beauty all around. Sometimes, I was even lucky enough to spot a peacock and I did not lose the chance of chasing it away down the muddy path from where it would take off, only to fade away gradually in the distance. 

Later on, I learnt gardening from a senior gardener who had the acumen to teach me the art of digging the soil, watering the plants, setting the flower beds, building the canals as also the nomenclature of plants. I learnt so much that even now I can manage to do gardening if need be. I had the privilege of serving the nursery for around nine months, but neither got nor expected any remuneration from them. Instead, what I got was healing from fertile soil and an air of natural confidence which no one can get from any school or college. I cannot claim to have mastered the skill but what I learnt was a lesson I will always cherish ---  don’t feel shy or ashamed of any labour. 

All this while, I maintained contact with SCARF. I would visit Chennai once every six months. I took my medication with an obsessed regularity. I did still occasionally hear those frightening voices. There were periods when my mind was overtaken by thoughts. This happened especially when I bumped into those nasty young boys, who were my so-called friends. But, I learnt to cope. 

About a year later, my father told me that it was high time I got into a formal job and also postpone the prospect of completing graduation since I still had to develop the concentration that academics demanded. The job I was capable of had to be simple and pragmatic. Computers were a far cry from what I thought was simple, but still as a temporary employee in a government enterprise, I struggled to be a data entry operator. I miserably failed to satisfy my boss and ended up doing a helper’s job of running errands. One led to the other and I ended up being a web content writer. Soon my writing skills were put to rest. My boss switched me to sales and again I had to call it quits because it was not my cup of tea. 

We then moved to Chennai, after my father retired from service. I am now employed at a restaurant, but still on the hunt for a job worth my salt  -- the salt of a writer. I might still be a loser but I sure am a fighter. 

I wish to let my readers know, that Schizophrenia is nothing but a disease like any other disease which can be overcome. What I have learnt from the doctors who treated me is that the symptoms of the disease, if dealt with at the earliest, can prevent the disease from getting worse. 

Schizophrenia is not like a typical fever or a common disease where the symptoms, with or without a blood or a urine test, can confirm the presence of the disease in a patient. It is a mental illness where an unknown chemical imbalance causes the patient to suffer prolonged depressions and irrational thinking (which reflect in his attitude and behaviour), as well as being unsocial and , always keeping his thoughts to himself. The continuous anxiety and and a state of preoccupation could also ultimately lead to delusions and hallucinations. The patient should be shown to a psychiatrist at the earliest and he should take the prescribed medicines regularly. It is a must for the patient to be busy all the time. Even if he is not able to do simple things that one can expect from a normal person, he can do simple labour like gardening, chalk making and similar such chores. With these activities slowly the faculties of his mind will start coordinating and gradually he will attain normalcy.

Normalcy may take one to five years or even more in some cases, but depends on how much the patient occupies himself at work. The parents or the guardian of the patient should not lose heart from motivating and reassuring him that he should engage himself in some work or the other. Under no circumstances should the patient be forced to work because it is the parents’ or the guardians’ responsibility to convince him to fight the disease. 

I still suffer from an inferiority complex that my brethren are so wealthy and I am not like them. Well, I am not jealous of anybody, it is not in my nature. When I get free from my routine work, I plan my next step. And when I overdo it, it unfortunately gives rise to anxiety. So I take some time off and talk to a well-wisher about something knowledgeable and positive. I sometimes give my heart to people who make me laugh, who joke about all and sundry to get rid of boredom. And when I become the butt of their jokes, I have also learnt to laugh at myself to do away with embarrassment. 

I am very lucky to have parents like I do and even luckier to have an uncle who relentlessly and lovingly nurtured me for more than half a decade to fight this curable disease. He infused in me the spirit of a workaholic to combat this disease, no matter what. My parents, on the other hand, love me more than they love my brother or sister. Not that my brother or sister have not played their roles in trying to cure me. They used to make me laugh at their antics and tantrums, which I cannot forget. They made me enjoy life and the colour and beauty it brings. 

Today, it is not than I am totally bereft of thoughts from the past. Sometimes, during the night, I still get preoccupied. But I am certainly comfortable with myself and the world!

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