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Submitted by Karishma Valliappan on 23 May 2019
A young person in a printed blue and gold dress standing next to a red stool which has a green artifact on top. In the background a window panel and a half open door through which you can see a room inside

Karishma Valliapan, 28 talks of her bond with her older sister Reshma Valliapan, the challenges of living with a sister who has schizophrenia and how it has affected her life choices and her coping mechanisms.

How do you Introduce yourself

A sibling that will never give up on any of her siblings even if they are or are not suffering from schizophrenia. A loving and supportive person who is devoted to helping people through their challenging journeys and therefore chose a path in neuropsychology. Loves dancing which has been my passion since I was a kid.

What are your early memories of Reshma?

Like all siblings Resh and I had our fights and arguments but we always had each other to fall back on if anything happened. My sister is fun-loving, humorous and just full of positive energy. I remember Resh loved playing sports and martial arts. She would just wait to go for basketball practice early in the morning and then get back to school. When it came to my parents she never quite got along with them. My sister always had arguments with my mother most of the times. My father was not around much as he was working in Malaysia and travelled to and fro to India.

What is your most vivid memory of her suicide attempts? She writes about how she only permitted you to be with her during those phases. How did that make you feel? Scared? Proud to be trusted? Your sister's keeper?

The most recent suicide attempt which I remember was in the year 2013. She had overdosed on her medications for the treatment of her scar epilepsy post craniotomy that she was on and started to get violent. When she is in that state of mind, all I can think about is how to get her out of it. At that point all I want is for nothing to happen to her. Yes, I do feel scared and angry at her for attempting suicide but then I do understand it is not her fault and all she needs is love and care at that point of time. I am happy she trusts me but I would not want her to rely on me. I wanted her to be independent, as I know I will not always be by her side in the future and she has to start taking care of herself.

What is your earliest recollection of her delusions/hallucinations - again what was it like? what did it make you feel? Where there discussions in the family on how to handle it? Were you part of these? Did they scare you?

The earliest recollection of her hallucinations was in 2002. I was 12 and was sitting in my bedroom when my sister came out of her bedroom frantically running and yelling “shut the windows they are out.” She was also holding a sharp object in her hand and for a second I thought there were robbers outside the house but when I looked out while going to shut the windows there was no one. My dad was a the front porch doing his work and he came out to hold my sister incase she would harm herself or any one of us. I had no idea what was going on and was so lost. Then when my dad held my sister and hugged her she calmed down. I was still so confused. After a few minutes we went and sat in the bedroom to call my mother to speak to her as my mom was in U.K. with my elder brother. While my dad spoke to my mom and my sister was sitting in between him and I, I did realise something was going on with Resh mentally. I was too young to understand what exactly but all I knew at that point was I had to protect her.

The second most recent recollection of her delusions/hallucinations was after her brain tumor surgery in 2013. She was hospitalized because she had overdosed on her prescribed medications and I was preparing for my final year bachelor exams. I was mentally exhausted because I really did not want to go through the same experience all over again. To top it all, I had my exams to focus on and my parents who never supported me emotionally. Most of the discussions about how to handle Resh was communicated by her psychiatrist to us and sometimes I would teach my parents how to handle her. Till date they do find it difficult but now it mostly comes because of their old age and lack of understanding and patience. The part that scared me the most was when she showed different personalities this time and was diagnosed with borderline split personality. She also bit my hand while she was at the hospital but I knew it wasn’t her but her “alter ego” that took over. I really wanted my sister to come back and not have her personalities take over her. I spent the whole night at the hospital, awake and observing her. She woke up in between and had another attack where she held my hand and refused to let go and I rang the alarm for the nurses and they had to sedate her and also tie her hands to the bed. That was when I realized I have had enough. I could not take any more as I had so much to deal with, with no emotional help whatsoever. I somehow buried my head into my studies and tried to deal with all that was going on. The only thing that helped me out of this is I constantly told myself she is my sister and I do really love her and if I give up on her I will never be able to live with that regret. I used my studies and dance to help me through the stress.

Did things change after the diagnosis? How did you feel about her being on meds? How did she change while she was on meds.

Things did change slightly after the diagnosis but for the worse. We as a family did not know how to tell the difference between what her schizophrenic symptoms were and her borderline personality symptoms. Took us a few weeks to figure out. I never really liked Resh on medications as it made her almost incapable of doing anything she wanted to. Especially what she loves doing like painting and sports. On the other hand I did think the medications helped her calm down emotionally and physically. She would never harm me when she had her delusions or hallucinations, but when she was diagnosed with personality disorder was when I kept my distance for a few days. Which hurt me because she is my sister and I missed having sister time with her. I started getting scared and afraid of being around her as I would not know how she would react. While on the medications she was moody, had speech issues, would often just stare into space and she became a vegetable. I always prayed and hoped the doctors reduced the dose and maybe take her off the medications as I could not bear to see my sister in a vegetable state.

And then she started painting? Talk us through the changes to her then and through her various attempts to reduce medication and the various unconventional therapies she tried out. What was that experience like? Did you wonder "Now what is she upto"?

In 2011 Resh was diagnosed with brain tumor which was non-malignant. That took a toll on her health and she had to deal with her mental illness and the tumor. She became weak physically and mentally but she never stopped fighting. Not once, did she show she was in a lot of pain and she would always be happy around everyone including the hospital staff and the doctors. Her recovery was fast but she took time to get back to her daily routine. She could not paint as the smell of the paints used to disturb her senses. After the incident in 2014, after a few months, she tried to get back to painting gradually. She would often get seizures and that was the side effects of her medications and the brain tumor.

Did friends and family ask you difficult questions? What stages in this journey was the toughest to deal with? Were you scared she would harm herself? Was there ever any fear that she would harm anyone else?

Yes, friends and family did ask me difficult questions or sometimes they would even pass comments that were quite hurtful too. When some of my cousins in India would call her “mad” or “stupid”, that was the toughest for me to deal with. Although they were also quite young and immature, I started thinking if I grew up too fast. Was it normal for me to be so mature or normal for them to react that way? I grew up always confused because I always think I grew up too fast (mentally). I was always scared and till date I am scared she will harm herself but there was no fear she would harm any one else. Maybe my parents, yes. But not as much as me being worried about her harming herself.

Family members are scared of letting a person with schizophrenia stop medication. And justifiably so. What is your advice to them? 

I will always say although you may be scared of letting a person with schizophrenia or any mental illness stop medication, remember that they also will want to live a happy life and medicating any one for too will take that chance away. All they need is love and support just like anyone else. We all need it.

Editor's note: Reshma worked with her psychiatrist to get off medications and find other interventions that work for her. 

As you look back at your journey as a sibling, how did this experience shape you and your life choices? Did you become her parent or older sibling?

I gained a lot and lost a lot throughout this journey. The experience I went through with my sister taught me how to be a strong and mature woman today. It also helped me understand myself better and what I would want to do in life, which is help people who go through mental illnesses and siblings who have to deal with their own siblings going through mental illness. One of the reasons why I chose to go neuropsychology today is so that I can help families who go through a tough time and have no support (especially emotionally). I was always a younger sibling to my sister and never felt like I had to change roles. But, sometimes I do feel like I am the parent between my parents and her but that is because it has come to a point where my parents are old now and sometimes it is difficult to deal with Resh because she still goes through her mood swings now and then.

How did you balance this with your school, college, etc.

It was extremely difficult but not impossible. I always kept my sister in my mind and always told myself I have to live and move on for her if not for anyone else. I was young and had to struggle between my emotions and my studies. My older siblings never really supported me much as they had their own lives and were also in different countries. But they did keep in touch whenever they had time. Being born in an over protective family is quite a challenge. When you have a sibling who has schizophrenia and your parents have to neglect you for some time but yet try and control you, it gets on your nerves. I felt the same. Then I got off track when I was in college and started dating but also kept studying so I never really neglected studies. Dating was just to get my mind off everything going on. I did get back to the love of my life which is dancing and that was the only thing that kept me happy and made me forget about all the problems I had in my life. Also, the only thing my parents did let me do because I guess they understood that dance helps me move on. So I danced my way through this whole journey!

This must have been exhausting. How did you take care of yourself? Did you ever resent being in the role you had to play? What were/are your coping mechanisms? Did you see a counsellor as well?

I honestly thank my and close friends in school for all the support they gave me and helped me balance all this with my school and university. Without them I would have given up on my own life years ago. Till date my close friends have always supported me and I think every sibling who goes through the same as me should find a reliable support system. I was never an excellent student in school and failed twice, but my support system was so strong that I would have dreamt of coming all this way to almost getting into neuropsychology. Yes, there were times I would just want to give up on my role of being a sister to a sibling with a mental illness and just run away from it all. But I guess I love too much and I kept a lot to myself too. Emotionally. My coping mechanisms was distraction. And dance was my everything at that point. Also, I never saw a counsellor at all and never had to because my family psychiatrist was always explaining to me how to deal with my sister. He is more like my mentor to me till date and the reason why I chose neuropsychology.

The difference between being a sibling of a person with schizophrenia and a sibling of Reshma.

I never like to differentiate as I love playing the role of both. After all I am still loving both sides of her and will always do.

Times when you have got indignant on behalf of your sister.

When no one understood her completely and everyone judged her.

What you treasure most in this relationship.

That I still have my sister till date and she never gave up no matter what she went through. We still fight like siblings and have worse fights but there’s always a soft corner for each other.

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