I began this project with the clarifying recognition that many of us who live with mental illnesses or care for those with mental illnesses often do not have the space to talk about the larger structures which determine their mental health in the society. The idea for this project had been brimming in my head for nearly three years. All the artwork is done is by Sonaksha Iyengar, a mental health advocate who shares her journey of healing through illustrations.
There are ways to seven ways to describe this:
No tendency to wake up
No spaces to make safe
No human who doesn't appear contrived
No escape from the fear instilled within you by the family and the state
No moment to sleep as sane people do with the lull of fantasies
No sentence that can carry through the social function of its consumption
In the summer of 2015, I had just brought a friend home to Kozhikode after she had her heart broken by her high-school sweetheart. One evening, my mother told me that my brother, Cheta, had the weekend off so he was coming home. When he arrived home, he looked at me and rushed towards me. He held my arms in a tight grip and gave me a hug. I was taken back because this possibly couldn’t be the same brother who hated physical contact and would only perform half-hugs for people. He told me how much he missed me, he strutted towards my room and hugged my friend too. Then he told us that he’s going out and wouldn’t be coming back for a while. Four hours later, he returned home. He said, “I had to go to the police station because someone tried to steal my scooter, which I had parked outside the church.” This statement shocked me even more. Both my parents are fairly indifferent to the existence of a divine entity; they are atheists. Naturally, neither Cheta nor I took any interest in going to religious sites. But the last straw was when we went out for dinner that night. The Arabic restaurant, Al-Baik was serving shawarmas but not Cheta’s favourite Al-Faham; roasted chicken. He looked up with indignation at the waiter when he informed him that they were out Al-Faham. He banged on the table with his fists, brought his face close to the tablecloth and burst out in tears. My mother looked at me across the table, her face turning beet-red with panic. Circling the table, my father went and stood next to Cheta. He rubbed his back as Cheta sobbed loudly into the tablecloth. Four days after that, Cheta had been diagnosed with bipolar disorder. That diagnosis has changed the way that I look at mental health and the deafening silence that surrounds it all given moments. Writing this piece is my way of breaking the silence, understanding the stigma that surrounds mental health illness, gauging the consequences of being diagnosed and gaining insight into support networks that are formed.
Since that diagnosis, Cheta has been in therapy for the past three years and is also taking medication in order to keep his mood fluctuations to the minimum. He works as a chef at a restaurant in Kozhikode and lives with my parents, who are his primary caregivers. Recently, I got in touch with my father to learn how to does one get better equipped to deal with the necessities of a loved one who lives with a mental illness. He said, “First and foremost, the primary resource that is to be built up, in the person with a mental health illness is the confidence that the caregiver can be contacted even if the slightest symptom flares up. One must work to build open and non-judgemental channels of communication.” He also emphasised on the importance of caregivers to familiarise themselves with the symptoms of the illness.
While speaking to a friend A, she added that after she was diagnosed with bipolar disorder, she did not know whether mental illness is an identity for her. Is it a noun or an adjective? Is she someone who lives with bipolar disorder or someone who is bipolar? She mentioned how identifying voluntarily as bipolar has been the only way to “take charge of a diagnosis that was imposed on me.”
Having met A while completing my undergraduate degree from Mount Carmel College, three years ago, gave me a sense of how much she had decided to take control of her own narrative. As the child of a single mother, who turned out be abusive at worst and supportive at best, A knew that as she graduated from college she would have to find ways to be financially independent. A grappled with her fraught mental health, and as a queer woman living alone, she knew that she had to reach out for help.Soon, she signed up for therapy at National Institute of Medical Health and Neurological Sciences (NIMHANS), one of the premier institutes that pursue work and provide patient care in the field of mental health and neurosciences. She says, “I was delighted to find a place that charges around ten-fifteen rupees per sitting with a therapist. I went there and realised that I could have been during college too, but the concept of going to a hospital on an allowance or pocket money didn’t seem like a logical thing to do.” The doctors at NIMHANS first diagnosed A with depression and started her off anti-depressants.
Unfortunately when A described traumatic experiences of sexual assault at the hands of a friend, her psychiatrist who was the head of psychiatry department at NIMHANS began victim blaming her. They told her that she should never drink in the company of male friends, as she could never gauge their ‘true’ intentions. She adds, “This was especially insensitive of him considering that I was still learning to live the trauma of someone violating my consent. I went home and cried for hours before deciding that I would never go back there again. I tried going to another psychologist and realised that mental health care can be really expensive.”
A was infuriated to know that each sitting with a therapist would cost at least 1,500 rupees. She went for a few weeks before deciding that she couldn’t afford quality mental health care, “The therapist asked me to meet her once a week, on top of which I would have to meet a psychiatrist once a month. The added costs for therapy and medication would run into 9,000 rupees per month. So I just fall back into taking care of myself. I’m not in any actual danger of killing myself, I’m able to do day-to-day tasks without additional assistance and I have learnt that depression is a liar, so the recognize those lies which I tell myself.”
Fortunately, A works as UX/UI designer at a company where she isn’t further stigmatised for being mentally ill. I have always known A to be a fearless and outspoken person, she’s the first person who told me that she’s pansexual and what identifying pansexual entails. She lives with her two cats, drives a motorcycle to work, and is decorated with countless tattoos and piercings. She adds, “Most therapists think that I look the way I do because I’m troubled, but they don’t understand that I look the way I want to because my appearance is the only thing I’m really in control of. Some of them ask me ‘oh, so you don’t live with your mother? Let’s talk about that.’ What’s there to talk about if I decide to live alone? They need reassurance that I don’t want to live with my mother and infantilise me in the process. Some have gone as far as guilt tripping me for ‘leaving my mother alone.’ Well, if I’m married and decide to leave my mother to live with my partner, then that’s perfectly acceptable but if I’m a single woman who has made the decision to live alone I’m suddenly selfish and irresponsible?”
A offers that her friends or ‘chosen family’ are the ones who make sure to keep her grounded. “My tight circles of close friends live with mental health illnesses themselves. They do provide care for me, quell the inner demons and act as a voice of reason when I’m in a depressive fog. But I make sure not to misbehave with them simply because I’m in a fragile space. I recognise how much emotional labour goes into convincing a suicidal person that they have many reasons to be alive. Understanding this has been important for me. Before this, I would expect that anyone who cared for me would hug me, pat my hair and let me sob into their arms. But I’ve realised that it's important to be calm and talk rationally to me when I’m feeling depressed or maniacal.” A reiterates that psychiatrists are a product of the society they’re born into, “They might know more depression as an illness but that doesn’t necessarily make them more progressive. My best advice to anyone looking for help is that having no therapist is much better than seeking advice from a bad therapist.”
While taking an occasional break from writing this piece, I logged on to FB to see that Suzanne, a dear friend who lives with Lupus, which is a chronic auto-immune illness, had published an article about healing and recovery. A line from that article which details the difficult experience of maintaining a positive outlook while living with an incurable condition struck me as an exceptional insight into the difficult work of being optimistic. She wrote, “Sometimes healing itself requires recovery from.”
Suzanne or Suzie, as I like to call her, said that after she was diagnosed with Lupus she had to completely redefine what normal meant for her, “My new normal is to feel extremely tired and it took me a long time to come to terms with that.” For Suzie, the daughter of a pastor and a practising Christian, it's her faith in God that gives her mental strength, “I spent the whole day today thinking about whether I’m delusional to believe in God or not. But my faith is not about believing in miraculous things or trying to shift my burden onto something. I just find more strength in my daily struggles. I have to come to the realisation that faith makes me less delusional and gives me more mental clarity.”
In the years that I’ve known Suzie, she has edited a film and a documentary, composed countless songs, edited tomes of research material, published a children’s book and visited Geneva as a part of the World Council of Churches. The fact that she was talented at so many things and could juggle all her interests is what drew me close to her. Now she works as a communications strategist at Zapr Media Labs. For her, the most difficult thing about living with a chronic illness is how it incapacitates you from doing seemingly effortless things like sitting in a chair for an hour. “Such a simple thing gives me more anxiety than not knowing where my health is going to head and if I’m going to catch an infection tomorrow. All this time I’ve placed productivity so highly and approached multitasking as if its something that defines me. Now I’m beginning to redefine my identity as someone who needs constant breaks. Until before I was diagnosed I used to value people’s productivity more than their character or their capacity to love. This has changed completely for me and taught me to value my own existence more than what I can get done,” she chuckles.
She acknowledges the value in sharing stories of pain and recovery with other patients of Lupus, but much like A who sees the importance in drawing boundaries while sharing her menatl anguish with survivors of mental health illnesses, Suzanne also thinks that its important be cognizant of ones own mental health, “While talking to other patients I realised how important it is to build support networks but having people share these stories constantly was also very draining for me. Some people have shared stories of amnesia, memory loss and inability read. As a writer, hearing these stories makes me very paranoid as there’s nothing I’m more afraid of than losing my mind. I have understood that ‘giving strength’ to each other also calls for boundaries although it's important to build a community of people who know exactly what it is that you’re going through. It’s a very tricky balance.”
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