12th July 1998, the day that changed my life forever…

Mental illness is nothing to be ashamed of. Neither is talking about it. It’s time to talk…

12th July 1998, the day that changed my life forever. I will always remember this day. It was the day I attended a family wedding, it was a football World Cup final day. Brazil and France were playing. I wore a light blue sari to the wedding and absolutely loved it; I was so excited to wear this sari. I remember it so clearly. After the wedding we went to my dear B’s house to watch the match with my usuals, Jay and Bhavik.

Everyone was excited and watching the match, I was sat on the floor, staring at the screen asking Bhavik way too many questions about the game. It was loud, there was a lot of laughter in the air, it was fun, snacks were being passed around.

Bhavik disappeared for a while, he was on the phone. He came back and quietly spoke to some of the others. He looked tense. He whispered something to Jay and Jay looked worried. She looked away. Everyone knew something I didn’t. He announced that we had to leave; we needed to head back home. I knew something was wrong but had no clue what was going on. I believed whatever he had said to me at the time and we drove home. It was a long drive from East London back home. The car was quiet; I wondered why the football was suddenly not important anymore. I sang along to the music as I always do and I sat next to Jay in the backseat. My head resting on her shoulder.

We got home and I walked into the house. Bhavik and Jay’s parents, Ba, Dad and my step-mum Harsha were all sat there looking at me as I walked in. I was stood by the door leading into the living room and my dad said the words “Anji, your Nannima has passed away”

I fell to the floor, my head in my hands and I sobbed. I hadn’t seen her for weeks. Many weeks. I had had busy weekends and I hadn’t been able to get to Leicester as often as I’d have liked. I had planned to spend time in the summer holidays with Mum and Nannima. It was too late; I was never going to be able to do that. I cried and I had a billion and one different thoughts running through my head. Suddenly my Mum popped into my head. What must this be doing to her? She would have been in pieces. I needed to see her. I needed to be with her. Immediately.

Jay held onto me, she let me cry and when I was ready Dad told me to get my things together. He told me he was taking me to Leicester.

We got to Leicester and I walked towards my Nannima’s flat. I was shaking. I was with my Dad and Harsha. I needed to see my Mum. We bumped into one of my uncles. Someone I was very fond of and I felt close to back then. I hugged him tight and he held onto me as I cried. He told me I had to be strong. I had to be strong for my Mum. Yes, Mum, I needed to see her. We walked up the stairs and got to the flat. I saw lots of different people, family. I saw my Mum she was sat in a corner. Quiet. Not moving. Not crying. Just sat there. Staring into space. The rest of the night and part of the next day is a blur. I remember being with my Mum’s cousin, she was by my side and she really wanted to help me. There was so much love in her eyes for me and my Mum. I could see the sadness in her. I tried to pack my Nannima’s dressing table up. I was going through drawers and trying to clear things out, it was the middle of the night and I remember her telling me that this stuff could wait; I didn’t need to do it now.

She was also by my side the next day when everything came to a sudden halt for me. Up until this point my Mum had not reacted to her mother’s death. When she did she did so with a loud scream, a terrifying scream that I can hear right now as I type this. She screamed and she cried and she shouted out “Mummy” repeatedly, louder each time. My initial reaction was fear and wanting to protect myself from the intense sadness that enveloped me. I ran. I ran as fast as I could out of the flat. I ran past the people who had come to pay their respects. I ran.

I got down one flight of stairs when my Mum’s cousin grabbed me and tried to stop me. I can’t remember what she said to me but I remember her words having a huge impact on what I did next. I think she told me I had to be strong and I had to be there for my Mum, that she needed me. I don’t know if she said the words or if I made them up in my head but something held me back. I didn’t run down the rest of the stairs. Instead I looked at her and I said “It’s okay, I’m okay” I turned around and I went back to my Mum. My tears had dried up and something inside me had changed. In those few seconds the way I processed thoughts had changed. I had suddenly grown up. This was the moment where I stopped being my Mum’s daughter and instead I took on the role of her mother, her carer. This was the moment where my Nannima handed over the responsibility of my Mums care to me. This was the moment that I had a child who I was now fully responsible for. Just like that my life transformed in front of my eyes.

I went back to my screaming, sobbing Mum and I held her tight. I told her everything would be okay. I stroked her head and I carried her weight and I let her fall into my arms. I comforted her as much as I possibly could and to my surprise she started to calm down. I told her we needed to get away from this flat and all the people and I took her to the wardens flat downstairs. I held her tight and between a few of us we got her down the stairs, into the other flat and comfortable. She rested her head in my lap and I stroked her.

A lot happened in the next few days. Emergency doctors were called out on several occasions. Medications prescribed. Mum was slowly becoming more and more manic. Her behaviour was getting more difficult to handle. She wasn’t sleeping during the nights or even days. I felt very alone though I was surrounded by people, family. I was suddenly in charge of my Mum’s care. When doctors visited people looked for me, I was dealing with anything to do with Mum. I was in charge of her medication. It stayed with me; I administered it at the correct times. It was hugely overwhelming. I felt that I couldn’t leave her side. I didn’t know what would happen in my absence.

Jay had decided to come and stay with me. Though she was sleeping in another house she was by my side at every waking moment. I felt at ease knowing she was around me. She had put herself in a difficult position for me. There was still some level of tension between my Mum’s family and dad’s family since the divorce and Jay had come and put herself in the midst of it all not caring about anything or anyone but me. Everyone was okay towards Jay and her being her she fit right in. She didn’t care about anything else, she was there for me. She even had abuse hurled at her by my Mum who in her manic state had lashed out at Jay for being from “the other side” and moments later showered her with love as she remembered Jay sleeping in her bed as a baby. I didn’t need to worry about this, or try to control it, I didn’t need to do anything, stop Mum or protect Jay. I knew Jay could handle it and I knew I didn’t need to say anything to make things better.

So very much happened in those few days. All I knew was that we needed to get Mum through to the funeral. We arranged a visit to see my Nannima as she lay fast asleep in her coffin at the undertakers. We felt this was necessary, especially for my Mum before the funeral.

This day lives with me forever. To this day I could give you a step by step account of exactly what happened on that day.

Nannima looked absolutely beautiful. She looked angelic, peaceful. She was such a kind and beautiful soul and this shone through as she lay there. It was incredible. I didn’t feel scared or worried or anything else, it was a beautiful moment we shared, one of our last moments together. We let Mum say her goodbyes. She cried and screamed and talked to her mother. She pleaded her to open her eyes again. She pleaded her to talk back. It was heartbreaking to watch this.

We were there for what felt like hours, I’m sure it’s wasn’t as long as that but it felt it. My Mum’s Mama told me I should go in the room alone and I should say goodbye to my Nannima on my own. He said not to worry about my Mum. He was going to stay with her and make sure she was okay while I was gone. I had wanted to do this so desperately from the moment we had stepped foot into the room and I felt so much love for him for suggesting it. I left Mum with him and I went in to look at my Nannima one last time, just me and her.

I stared at her beautiful face. She was glowing. I stared at her for a long time and then tears started rolling down my face. I cried a lot, quietly. My heart was hurting. I’m not sure I had ever felt pain like that before. I stroked her head and kissed her forehead and told her not to worry about her Ilu. I heard my Mum outside the room screaming and crying “Mummy” repeatedly. I knew it was time for me to leave my Nannima’s side and to take care of my Mum.

And just like that the funeral happened, my Mum was amazing. She remained calm and sang my Nannima’s favourite bhajan for her as we waited for the coffin to arrive. Dad came to the funeral and I felt so much calmer knowing he was there with me. When Nannima arrived I clung onto my dad and I cried a lot. Mum had her CPN with her the whole time. And just like that… she was gone.

What followed from here on… well it’s safe to say I lost a part of me that day. I lost some more of my innocence. I had never been an average child even before this, I’ve always been a bit of a grown up from a very young age. I definitely have never been “normal” whatever that may be. I was sixteen years old, seventeen in just days and there I was with this huge responsibility on my shoulders. At the time I felt lost, incredibly lost. I didn’t know whether I was coming or going. Mum became more unwell and eventually after trying to hurt herself a few times and trying to kill herself she was sectioned and taken into hospital.

I eventually went back home, back to London, back to dad’s house. With frequent hospital visits and daily contact over the phone with Mum. This is where my journey began. Though I had many experiences with my Mum and her mental health prior to this, this was the turning point for me. I had no idea back then what the coming years had in store for me. I have started writing this blog today in the hope that I will help someone somewhere who may be struggling how I once was.

Being the child of someone who suffers with paranoid schizophrenia is not easy. The stigma attached to this. The lack of understanding. The frustration that goes hand in hand with it. There is so much that is not talked about. It took me a long time to be able to do this, 20 years and I’ll be honest I’m still not quite there. I am still struggling. We still have our challenges. It never goes away and it never gets any easier. I have gotten better at dealing with certain aspects of it and I have learnt what to do in certain situations. Let me tell you though it eats you up from the inside. It affects your life in unimaginable ways. It affects your relationships with the people around you. It gives you a completely different outlook on life.

It teaches you to put yourself in other people’s shoes more often. It teaches you to not judge others. To give people a chance. To appreciate what you have. It changes you.

You will always have good days and bad days and this is okay. It’s okay to have bad days. You will learn from the bad days. Bad days can go on to become bad weeks or even bad months and again, that’s okay. It’s important to give yourself some credit and give yourself a break. It’s important to remember that bad days will always be followed by good days. Always.

Thank you for reading this today and for sharing my journey with me. I hope to share things I have never really shared before. Experiences I hope no one else has had and if they have to know they are not alone. I hope to make a difference in just one other life.

Say it, show it, do it… Make a difference.