Living Inside My Mother’s Dreams

By Nitya Bhargavi Nukala

I recall being in third grade when my grandmother asked my sister and myself to live with her from then onward; we didn’t ask why, how or what, we just did it. We left our parent’s house, changed schools and moved out. My dad unwillingly accepted it, because he thought keeping my sister and myself away from my mom would give us a better childhood. My mom cried for a very long time, but she was helpless in a very different way. Years passed by, and my mom’s situation only got worse. She had what I call “Casual Schizophrenia”, she was possessive of us and believed that we were being abused by people in our neighborhood and/or that they lured us into alcohol, drugs and sex. I felt that the reason behind us leaving our parents was because people were uneducated about mom’s mental condition. They felt that she might harm us, although their intentions were pure the execution was bizarre. They didn’t take any medical action to cure mom right away due of the taboo that came along with mental illnesses. They were scared of the social stigma by visiting a psychiatrist or using psycho-altering drugs and felt that they could pray it away.

Dr. Kalyan Chakravarthy once said that, “If not treated within certain period of time, a physical illnesses add up, but mental illnesses only multiply”. When my mom started to go for therapy indeed, it was quite late—her illness did multiply, and took longer for her to recover. Out of Mainstream: Helping the Children of Parents with a Mental Illness mentions, that “A frequent feature of psychotic illness is the denial of the need for help or of difficulties” (Wilson 4). An article called Relationship between Deviance and Mental illness, describes a part this reaction as a Functionalism, a person who believes that by recognizing an illness we uphold values about conforming behavior (Crossman). Patients, as functionalists, resist conforming to societal norms, behaviors and the label of being mentally ill. They do not accept their illness, seek medical attention and assume that there is nothing wrong with their behavior; which in turn makes the situation worse as Dr. Chakravarthy mentioned.

Stigma

Perceptions over the mentally ill brings a lot of stress—not only to the patient but the family members as well. Substance Abuse and Mental Health Service Administration estimates the percent of individuals with Serious Mental Illnesses (SMI) to be 4% of the entire population. The article further states one in every four people suffer with some form of mental illness and also the four in every hundred people in the entire population suffers from a SMI, 90% of who are suicidal. I believe that this number is inaccurate because most people with SMI don’t know that they are ill either due to lack of education or social stigma, the percentages would be much higher with comprehensive research. Though these numbers seem relatively alarming, we continue to add additional pressure on the ill by either holding them to unreasonable standards, ignoring/avoiding their presence and opinions or even worse sympathize with them; there is no in between. Due to one or all these factors families and individuals prefer hiding which only makes the situation worse.

Empirical research suggests that stigma associated with mental illness affect people till a level which hinders their ability to cope.  An integrated study researched the impact of it over people suffering with schizophrenia (127 participants; 67 male, 60 female), higher levels of stigma were associated with lower self-efficacy, confidence, social withdrawal that exceeded the impact of depression, reduced hope and viewed it as an obstacle to recovery. Individuals and families felt the need to hide it from society. Because they often felt devalued and discriminated for it (Abiri. S. et. Al).

I asked my mom if I could share her story, she innocently accepted. As she spoke about how heartbreaking her experience was, my dad overheard our conversation and asked my mom to not talk about it. As though my dad was scared or even ashamed about it; I explained to my dad about my research and asked my dad about his perspective, he answered that he could only help my mom when he stopped caring about what the society thought of her. He sometimes also had to withdraw from social events and gatherings, this way he didn’t exert any pressure on my mom to behave in any socially acceptable manner. He stopped worrying about what people had to think or say, additionally he didn’t enjoy the sympathy or gossip of anyone; He didn’t exaggerate the impact of it, I remember that some family members were supportive and understanding, and some just weren’t; They treated my mother worse than a stray animal by ignoring all her opinions and feelings. Either way, we reckoned that it wasn’t helping mom. It took a very long time to stop caring about what people thought because in a superstitious Indian environment, it was easier said than done.

My Sister’s Perspective

I would say that my sister understood my mom more than anybody ever could. And so, I tried to interview her about her experience living with my mother. The moment said, “I want to interview you for a paper that I want to write for my class. It is about mom’s illness and the impact of it”. She immediately yelled even before I could finish my sentence,

“Why!? Why do you want to mention that it is your mom? Where would it be published? Why do you want to do this? Are you insane? Why would you write about your mom this way? Why do you need grades on this aspect?” (Nukala).

She furiously bombarded me for a couple of minutes trying to convince me to not write about it. I expected this from her, because she has always been secretive about my mom’s disorder, she felt that if people knew that my mom was “Schizophrenic” their perception of deviance would be worse, and that might associate my mom with some other extreme case of schizophrenia and ultimately those assumptions would impact our lives. She explained to me, that if anyone in our family could get a hold of the paper I am writing, the consequences would be severe. She couldn’t explain all about it, but she just didn’t want me to write anything about mom. She said we needed to hide the label to protect mom to avoid the more sympathy or gossip. I felt my sister was really scared of the term “Schizophrenia” more than the illness itself, she was being a functionalist but in the process of hiding the label, I felt she accepted my mom as someone deviant.

When I planned to interview my sister, I thought that those labels really didn’t matter after all these years but, as she tried to convince me and logically put forth each of her points one after the other, I couldn’t help but notice how much of an impact it still has on her till this day.

Eventually she figured that I would write about it regardless, and so she resentfully accepted to interview with me. As, I started to interview her and ask questions such as, how did mom’s illness affect you? Would you say that it had a huge impact in your life? And so on, she stopped me in the middle of our conversation and wanted me to write about how one going through a similar situation could cope with such a situation rather than portraying the impact of labels; she called it, “Glorifying the pain and agony of suffering”. She felt we could never expect society to me more accepting, it is unreasonable to expect such a reaction and it would be Utopia if that would ever happen. She wasn’t able to explain why we couldn’t challenge it and concluded with motivational dialogues expecting me to include it to my paper. But simply gave up on any hope to expect anything from the society and learned that working around labels by hiding it is more ideal. This conversation made me rethink how different the situation could be if there was no stigma when people communicated with mom.

When my sister tried to convince me to not write this piece, she also ridiculed my idea by saying that I might be trying to “use” my mother’s story as a means to get a grade by sympathy. Additionally, she did not want the label of being “the daughter of a mentally ill”. Her perception seemed odd but reiterated the fact that society sympathizes the children of the mentally ill. Although several factors play into why people labelled us to be deviant, social status was a huge one of them.

When Anne Sexton—a famous American Poet, committed suicide in 1974. Her first daughter Linda Sexton tried to gather her mom’s work and find an author to publish Anne’s biography, she wrote in an article that, she struggled to convince her family. And writes, “If public condemnation is difficult, the family reaction was more painful”. Her family didn’t want anyone to know about the way most of her story. Linda’s father commented as she writes, “[S]ome parts of the story ought to have been withheld in the name of the family’s privacy”. This reiterates the need for privacy, to hide or kill some stories to protect themselves from the labels that come along with it. But, in all the research I have done over Anne Sexton, most of it shows the need for awareness over mental illness and I gathered that’s what Linda Sexton was trying to do too, but I couldn’t avoid but notice how media glorified her death because she was a poet.  I found it odd that mental illness was glorified in one case and ridiculed in another.

Impact

The impact of stigma cannot be exaggerated because we frequently associate an extreme case of mental illness to any label. For instance, any time the topic of mental illness arose in universities, bipolar disorder, schizophrenia, and major depression were termed as extreme forms of mental illness. And examples of people with such mental illness were rapists, drug addicts, serial killers or some form of criminally incarcerated. One professor also said, “I have never heard of a Schizophrenic Mother, that seems unusual”. This shows the lack of knowledge in everyone, educated individuals included.

In my opinion, the “S” in SMI is termed serious not due to the severity of the illness but due the time its effects can hinder daily functioning. Consider the term “disease” it breaks down to dis-ease, that it makes one feel not at ease. On the other hand, consider the word “disorder” it breaks down to dis-order, which means that it could disrupt one’s order of functioning. SMI are usually disorders and not diseases, and might not be completely treated, but they can be controlled.  But I don’t think we can help control these diseases until we accept them

A research studied the stigma related to patients with Schizophrenia and found that patients and family members faced discrimination in almost all forms, some reported being treated differently in the health care system, and some reported derogatory remarks. Most of the stigma came with the prejudice around mental illness. Patients isolated themselves in order to feel protected (Gonzâalez-Torres. et.al). I felt the same when I was with mom too; I met close to 20 psychiatrists before I turned 15 years old and most of them spoke to my mom as though she was a heartless creature, yelled at her for moving or worse other times. When my sister came about with the realization about mom, she said “I wanted to stand up for [mom] and didn’t tolerate anyone talking to her disrespectfully”. The stigma in healthcare is what is particularly concerning to treat a patient with any mental illness one needs a lot of patience and if health care providers don’t make an informed choice to treat patients fairly, the cases of SMI would only get worse. The health care system should be more supportive in order to reduce the impact of the illness not add to it. If patients don’t even feel comfortable with doctors, they will be more resistant to accept and/or heal.

Conclusion

People failed to acknowledge mom was a normal human being before a mentally ill, they failed to separate her feelings with her disorder. She cooked us good food sometimes, worried like a kid and laughed full of joy. Sometimes she had the worst fears, conversations ranging from something as small as: Did you smoke today? Until: Did you get paid to have sex with that stranger? But she is still human being.

Our family struggled with the stigma for a really long time. Although mom is in a much better state today, if we didn’t have to fight with the society to protect her, I think our journey could be a lot more seamless. When someone listens to my story, the last thing I’d expect is sympathy. People need to be more aware and accepting of the mentally ill. In order to normalize mental illnesses, we have to accept that our mind is a complex being and just as we physically fall ill, one might mentally fall ill too, and it is extremely normal. The day when we accept the mentally ill as people before considering them as ill, we could tackle the core of the problem and not waste any mental energy in stress that comes along with stigma.

 

Works Cited

Wilson, Peter. “Out of the Mainstream: Helping the Children of Parents with a Mental Illness.” British Journal of Psychotherapy, vol. 30, no. 1, Feb. 2014, pp. 126–129. EBSCOhost, doi:10.1111/bjp.12068.

Chakravarthy, Kalyan. (2007) Interview by Sri Lakshmi [verbal conversation]. Counselling Therapy Session. Hyderabad, India.

Crossman, Ashley. “The Sociology of Deviance and Mental Illness.” Thoughtco., Dotdash, www.thoughtco.com/deviance-and-mental-illness-3026266

“What Is ‘Serious Mental Illness’ and What Is Not?” Mental Illness Policy Org, 7 Sept. 2017, mentalillnesspolicy.org/serious-mental-illness-not/.

Gonzâalez-Torres, Miguel, Rodrigo Oraa, Maialen Arâistegui, Aranzazu Fernâandez-Rivas, and Jose Guimon. “Stigma and Discrimination Towards People with Schizophrenia and Their Family Members.” Social Psychiatry and Psychiatric Epidemiology. 42.1 (2007): 14-23. Print.

Abiri, S, LD Oakley, ME Hitchcock, and A Hall. “Stigma Related Avoidance in People Living with Severe Mental Illness (smi): Findings of an Integrative Review.” Community Mental Health Journal. 52.3 (2016): 251-61. Print.

Nukala, Sri L. (2018 December 8) Interview by Nukala, Nitya Bhargavi [Phone Interview]. Conversational. Tirupati, India.

Nukala, Srivinas. R. (2018 December 8) Interview by Nukala, Nitya Bhargavi [Phone Interview]. Conversational. Tirupati, India.

Nukala, Naga. V (2018 December 8) Interview by Nukala, Nitya Bhargavi [Phone Interview]. Conversational. Tirupati, India.

Sexton, Linda Gray. “A Daughter’s Story: I Knew Her Best.” New York Times, 9 Sept. 2015, lindagraysexton.com/a-daughters-story-i-knew-her-best/.