Saying 'mental illness' the first time

Saying 'mental illness' the first time

On the day I watched my mother grow violent, I dared to say for the first time the words “mental illness”, but in whispers. I was terrified. My friends were by my side, and we fumbled with Google to figure out what medical institutions could help. What symptoms should we type into that search bar? We did not know, and I did not want to guess, aware as I was of my ignorance. We made phone calls. I wrote long emails explaining my mother’s history. We talked to as many people as we could to try and make sense of how to act. We assembled a few phone numbers of psychiatrists who we might access directly.

The situation was dire, and we wanted to act right away. Finally, we decided that we would just go to NIMHANS, an institution we were told was reliable and one of the best. We convinced my mother that we should go to a doctor the next day. We did not know if she would consent to wait, so the next day was the day to act. All we knew was that there were timings: 7 am to 11 am.

And so, one crisp and bright morning, we ended up in a long queue at NIMHANS at 8 am, awaiting an appointment with we did not know who or what. What we did was what hundreds of people do every day: entrust themselves to a long queue at the end of which are doctors. The long wait was a strange thing -- large rooms with booths, waiting rooms with hundreds of chairs, people milling about as though in a train station. Benches outside, pens exchanged and shared to fill out a mandatory and simple form detailing the patient’s age, sex and name. No sense of who among this mass of people were the patients, or the caregivers. And the shuffling, frustrated sounds of people waiting, feigning patience.

There is a kind of relief to this predesigned process of accessing medical care. One is the palpable sensation that there are so many who are in the same position as oneself: helpless, unknowing and tired. The second is the comfort of procedures that keep you moving from one task to another, until you finally come to your turn. At the hospital, we waited for one long queue to shorten, reached the admission counter, filled out the necessary forms, and were told to wait again. We joined another queue, now with a coupon in hand as though waiting for a bank teller to issue money, and that line thinned as well, and soon we approached another cabin. By the time we reached a junior resident doctor, I breathed a sigh of relief.

We walked into a small cubicle in which there was a man with a file seated across the table. I knew then that I needed to trust this man and let him do his work, but it proved to be difficult. Was he asking the correct questions? How did I know what he was looking for when he asked how my mother dressed? Did I have any authority in this position to question his questions?

Looking back, it occurs to me that visiting a psychiatrist is very unlike say, visiting a dentist. The answers to a dentist’s questions are facts: yes, my molar hurts, and I do smoke, and brush twice a day. The answer to a psychiatrist’s questions leave you in a strangely defensive zone. And especially answering on behalf of another: Yes she bathes, but why do you care? She has always worn clothes like this, but how is that relevant?

And so it went: a kind of back and forth where anxiety mounted. We had one option: to remind ourselves to trust this process and keep going. It turned out that what my mother needed was “further observation” and we were sent to another part of the campus on one of those carts used in zoos and parks. We moved from what was a cubicle to an actual hospital dormitory, and waited again. Another set of doctors arrived, asked us more questions, and further down the route of analysis we went. By the end of that process, we were told she needed to be admitted.

This was just one long day in many that were to follow, where neither diagnosis nor solutions presented themselves in a hurry. What mattered at the moment was that we granted ourselves patience. It had been a long unknowing journey in any case. We might as well wait a little longer.

The first morning, I woke up from a medicated sleep. I had been exhausted by panic and anxiety, and the doctors had given me a sleeping pill. I woke up to find my mother was not on her bed. As I burst into tears, I was treated with the affectionate indulgence of people who knew better than to worry – other caregivers in the dormitory, who had seen it all in these hospital corridors. She had been taken for some tests, they said, lie down, it will be alright.

Each day passed with this mixture of panic and patience. A set of tests. Hours of recollection. Files filled in with meticulous detail of my mother’s emotional history. The doctors at the hospital did not give us any hasty explanations and took their time to work out their diagnosis.

I asked to go home. I wanted somebody else to replace me, I wanted to be away from this. But I was told I had to stay. I needed to be present to recount her actions, her behaviour, to help the medical practitioners piece the puzzle together to come closer to diagnosing her condition.  I was the reality to her unreality, the witness to her deflection to the other side.

Several days passed, and my friends helped me help the doctors assemble all the material they needed. These friends, who are my only family, took charge. One friend stayed all the nights in the hospital and let me step away. All of them made sure I ate, and laughed and slept, and did not succumb to the panic I felt at every breath.

And the time of year when my mother was diagnosed was ridiculously beautiful. The tabebuia trees were all in flower, and right in the front yard of Psych Block B at NIMHANS, two tall trees in the garden were a riot of the softest pink. The sky was also ridiculously blue, and the sunsets were gorgeous. In the evenings the tabebuia flowers would fall down, gently, almost soft like silk cotton, twirling and twirling, and making a fine carpet. In other parts of the campus there were jacaranda trees, carpets of purple, and other places, yellow.

It seemed so strange that the world was not a storm of dreary gray, like my head. I would walk home and look at the honge trees with their leaves in chiguru (a word in Kannada I feel should not be translated because it would be something banal like ‘sprout’).  My mother had always told me the shade of this tree was like a mother’s embrace, thaayiya madilu.

Sitting under one of those beautiful trees with my mother to pass time made the dream like quality of that whole time even more dream like. It felt like stolen time, time in limbo. I didn’t know if she would be well, I didn’t know if she’d be worse in the future. I didn’t know who I was, and I didn’t know who the woman who’d come back would be either. The falling flowers were a kind of feint, I would watch them fall and sit, not knowing what to say to her, by her side.

Time passed, and the doctors told us what her illness was: Psychosis. The first time I heard the word, it held all sorts of meanings. It was a frightful sounding thing, an abstraction I could not understand. Unlike how I thought of physical illness, its description had the quality of analogy and metaphor, and no materiality.

It disrupted my world entirely. I had lived with my mother's unreality for years, enough to know that whatever world she carried in her head did not correspond with mine. But how did that come to be? And when did her 'real' self, if there is such a thing, begin to be this person before me, who was angry to be admitted to hospital, who felt her consent was being trampled upon, and who insisted I was not her daughter?

What were these voices in the head? Was it like an illness in an organ -- like a kidney or heart? When I had mentioned voices in the head to a friend, we had innocently discussed the voices in our heads. We talked to ourselves sometimes, even staged elaborate stories for ourselves. Was that okay?

Her diagnosis was difficult to understand, but the doctors made sure we knew just enough to make sense of things. Schizophrenia leaves those ill, out of touch with reality; they have hallucinations and delusions. It was a relief to have this knowledge. I did not need to decode everything she did by my own scheme of meanings as I had been attempting to until then. I could focus instead on looking after her.

It took five weeks for the hallucinations in my mother’s brain to “vacate”, a charming medical term that always makes me smile. It makes me imagine the voices, the delusions and characters who lived inside her leaving the room politely on an eviction notice. Through those five weeks, I realised how long I had lived with something that could have been attended to, had I not been ignorant of the brain as an organ with its own life and potential maladies. I asked myself through that time how it was that we had not recognized that this was a person who was ill, who needed a doctor as much as a person with a broken limb did.

There are many answers for why I possibly did not know how to make sense. I had taken her to various psychotherapists and even the occasional psychiatrist, who had not been able to deal with this. But I do know that to think that there is help, and that this can be dealt with, has changed our lives for the better. I also realize that perhaps we would have been saved a lot of grief and time had we known what to do with this situation. But we have been very lucky to encounter very sensitive medical attention that helped both my mother and I come to terms with what has happened.

I am aware too, that this is not always the case. Some people have illnesses that stubbornly refuse to recede, and a lot of people have no access to medical care at all. Even worse, several people have bad experiences with the very institutions that are meant to help them. But those are stories for others to tell.

Our doctors told us that my mother could come home and did not need the kind of psychiatric rehabilitation that so many patients require. I went home with great trepidation, knowing that life would change significantly. I could not leave her alone, and my friends, who had stayed by my side during the severest moments, had to leave us on our own to live their own lives.

My mother started returning to a semblance of an older self that I could recognise. She would cook and nag me to eat meals on time; she would fold clothes and arrange magazines like the methodical woman I remembered, and I began to relax into the idea that the medicine was helping her.

It has not always easy to be by her side, and the every days outside of the heightened moments of crisis were often filled with apprehension. I worried she would become ill again. It has taken a lot of time to balance this with the rest of my life. It is possible that giving a condition a name helps many things; but there are other forms of care and affection that one still needs, less quantifiable and often ambiguous and messy.  

My mother and I now live in a cosy little home, and though it often feels like we are meeting after a decade apart, we have built a sweet little life together. I don’t often remember everything that happened to her, and she remembers very little of it herself. I am grateful that my mother is back. On some days when the tug of the tie that links us feels heavy, I try to focus instead on her smiling and being at tandem with things around her and thanks the stars and the medication for keeping her well.

The second of a two-part series by a daughter on her first brush with mental illness when her mother was diagnosed with schizophrenia. Read the first part here

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