Schizophrenics Can Be Good Mothers Too: Nina Packebush talks to author Sanchita Islam

“I’m not trying to minimize it, many of us will recognize that there are times when children need to be protected and difficult decisions may have to be made.  Of course it’s serious, but the more credence you give to it, the more it will grip you by the balls. It’s like firing bullets of logic. It’s like a war. All this irrational stuff is coming at you and you have to let your prefrontal cortex take control of that dodgy limbic system and it’s a struggle because clearly my prefrontal cortex doesn’t work properly. The limbic system is often in control, but I’m aware of it, so it’s this conflict within of me trying to behave in a certain way. I mean I’m sure talking to you now is a good thing for me to do because it makes me think, well at least I’m making use of it and I’m using it to try to help others, which is another tool; being altruistic. There are all these things: using your hands, helping others, focusing on children, trying to get out of your head.”

 

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Schizophrenics Can Be Good Mothers Too

Nina Packebush interviews author Sanchita Islam

We’ve all heard the tragic stories of the new mother who—in the months after giving birth—murders her infant. These stories, though rare, are far too common and seem to have a similar trajectory; friends and loved ones talk of how the woman was a “loving mother” and how she “hadn’t been herself lately.” The people close to the mother find themselves in a state of shocked disbelief, how could the loving woman that they knew, who was so excited to become a mom, turn so unexpectedly into a cold blooded killer?

After such stories make the news social media explodes with people vilifying the mother, words like monster, evil, and garbage are used to describe the mother and calls to murder or sterilize her drown out any calls for compassion or understanding. A few days later the words postpartum psychosis will begin to filter into the news stories, but by then very few are listening.

Years ago a close friend of mine found herself struggling with visions of harming her baby. A voice in her head was telling her that the baby would be better off dead. The voice said that the baby had no chance for a happy life. The voice started to give my friend specific instructions on how to kill the baby. The voice went on to tell this young mother that she should also kill herself, because if she and the baby were dead they could be together forever in a world much happier than in the one they were currently in. Thankfully this friend trusted me enough to tell me what was going on.

The problem was, there was nowhere to turn. We were afraid to tell anyone in authority for fear the baby would be taken (a valid fear) and so we trudged through it together, but alone. I scoured the internet, the phone book, and all local resources trying to find someone to help, a safe place to go, anything at all, but nothing existed that didn’t come with a risk of losing custody of the child. We had to make it up as we went along, and that was terrifying for both of us. I have since found out that this is a very common experience for women experiencing postpartum depression and postpartum psychosis. The help just isn’t out there. Very few doctors, midwives, or doulas are given any specific training on identifying women at risk of developing serious maternally induced psychiatric problems, nor are they trained in how to best help women who do fall victim to postpartum depression (PPD) or postpartum psychosis (PPP).

This is disturbing considering that approximately 16% of new mothers will experience postpartum depression and of those one in five will have thoughts of harming themselves. Suicide is the leading cause of maternal death (pregnancy through the first year of the baby’s life) in developed countries.  About one in 500 women will experience the far more dangerous postpartum psychosis. A prior diagnosis of bipolar disorder or schizophrenia increases the risk of postpartum psychosis to a staggering 25 to 30%,  and yet we rarely talk about this until it’s too late. This silence is very dangerous to both new mothers and to their infants.

sanchitascrollSanchita Islam, UK based writer, artist, activist, and mother of two young children is talking about this. She has dedicated her life to educating people about this very real threat to mothers and their children. Islam has created a vast and stunning collection of visual art that explores the topic of madness and motherhood, including her thirty foot long Soul on a Scroll, but her current project, a book titled Schizophrenics Can Be Good Mothers Too, may just be her most powerful and far reaching project to date. Schizophrenics Can Be Good Mothers Too is a collection of poems, essays, and visual art exploring motherhood, psychosis, creativity, and healing.

Islam knows first hand what it’s like to experience voices and visions, mania and depression. She experienced her first episode of psychosis as the age of 36 and was subsequently diagnosed with schizoaffective disorder. Later when each of her two children were born she found herself in the throes of postpartum psychosis with almost no help available.

Islam lives with voices in her head including Mia the outgoing, sexy, center of attention Diva, and the much more dangerous Fred. Fred is a dark voice that taunts Islam, sometimes commanding her to harm herself or her children. For example, sometimes when she’s nursing, he will demand that she harm her infant by pouring boiling water on the child

What’s it like to have Fred living inside her head?

“Imagine someone standing a centimeter from your face screaming very unpleasant stuff at you for hours on end, especially when it’s time to sleep. That’s what it’s like inside my head,” she said.

“My brain can get a bit hot at times, there are seven billion different landscapes.”

Islam has shunned medication because she found that it wasn’t effective and, more importantly, it made her into a zombie. She has chosen to go at life clear headed and unmedicated. I asked her about this.

“I think it’s about choice,” she said.” If people want to go on meds it’s their choice, if people want to see a psychotherapist that’s their choice, but then there are people like me who don’t want to go on meds. I don’t want to see anyone. I don’t want to sit in a room while some stranger is writing my shit down in a black book. I don’t want that. I find it disempowering. I’ve got stuff to do.”

“When you are institutionalized it can take away your confidence. And if you are on heavy meds you’re basically like a zombie.”

So how does she navigate this very tricky and potentially dangerous mental terrain?

“I was being told to throw boiling water on my newborn and because of my history of psychosis I understood the pattern and I understood what was going on,” she said. “It’s taken many years to understand the nuances of my condition  and the patterns within it. There are distinct patterns in any mental health condition. If you look at it in a detached way with less emotion then you can deal with it. Like when Fred is telling me to jump out the window, I’m sort of like, Oh alright, here we go again.”

“And drawing helps. I would draw my children while they breastfed, so my mind could be distracted from these visions.”

sanchitadrawingIs it really that simple?

“I’m not trying to minimize it, many of us will recognize that there are times when children need to be protected and difficult decisions may have to be made.  Of course it’s serious, but the more credence you give to it, the more it will grip you by the balls. It’s like firing bullets of logic. It’s like a war. All this irrational stuff is coming at you and you have to let your prefrontal cortex take control of that dodgy limbic system and it’s a struggle because clearly my prefrontal cortex doesn’t work properly. The limbic system is often in control, but I’m aware of it, so it’s this conflict within of me trying to behave in a certain way. I mean I’m sure talking to you now is a good thing for me to do because it makes me think, well at least I’m making use of it and I’m using it to try to help others, which is another tool; being altruistic. There are all these things: using your hands, helping others, focusing on children, trying to get out of your head.”

“My body is hardwired to seek dopamine and endorphins, so I seek it through natural methods; getting on my bike, eating dark chocolate or serotonin rich foods. I mean there are ways that a person can dodge the bullet. The bullets will keep firing at you, but you’ve just got to try to stay one step ahead all the time. Life is like a minefield, but as long as you don’t listen to the voices, and you don’t jump, and you manage to sleep—sleep is so important, maybe the most important thing. Sleep and a gentle voice, that’s what mothers need.”

“It’s a constant war,” she said, “but it’s a battle that I embrace and it’s a battle that I accept as a part of life. Life is a fight for everyone, and this is just my fight.”

sanchitababy“I concede that it’s much harder to do it my way than to pop a pill, but in the long run I think it’s better for society and better for the mother. You’ve got to feel that you have purpose in your life.”

Islam has a supportive husband that can step in when she needs a break. I asked her about the women that may not have this.

“It’s a fact that some people don’t have an amazing partner and they don’t have a support structure right now, so what are you supposed to do? You have to be creative and make it out of nothing. It’s not ideal, but you have to. I don’t like to use the word self help, but sometimes if you reach out to the wrong people they’ll just kick you. Some of the people who are the closest to me have at times been the most cruel, so family can be not the warm tribe, it can be a battle zone. I find sanctuary in painting and words. And that’s what people have to find, whether it’s gardening or walking or reading or baking or whatever it is. They have to find their own sanctuary, they have to find their own island to get away from the madness, to get away from the heat in their mind.”

I asked her if she thought of herself as mentally ill.

“I don’t like to use the term mental illness. I mean what is that? What is that? I’m talking to you now. Do you think I’m mentally ill? No, I’m coherent and articulate and I’m working as we’re talking, so why give myself that label? My brain can get a bit hot at times, but that’s all. It’s trying to find a whole new language for these landscapes—these seven billion different landscapes.”

“The greatest people on this planet were so called mentally ill. The greatest musicians, writers, and artists, but they’re only lauded when they’re dead. I don’t want to be one of those people.”

sanchiatsonWhy did she write this book?

“I want there to be fundamental change. If I hear about another woman who kills her child or herself over postpartum psychosis then I have failed that mother.”

“I’ve created a resource that wasn’t there before. If it doesn’t exist you have to create it. That’s what I have learned. If those structures don’t exist, if that knowledge doesn’t exist then you have to do it yourself rather than plead with people and that’s what I’m doing. Now it’s become my life’s work. It’s part of my work as an artist, it’s part of my work as a writer. It’s just taken over really, because I feel like I have to do it. It’s like a compulsion now, because when I see how backward things are and how much needs to be done I think, Ok I’ve got to do it. It feels very lonely though, this path that I’m on. The reason I’m doing it is not about me, it’s about my children and for the next generation.”

“Everyone is vulnerable. Anybody can fall into psychosis. Any mother, without any history of mental illness, can suffer from psychosis. Anybody can suddenly be hit by depression.”

What do you hope to accomplish with this book?

“I just feel like if people read my book, not only mothers but also people who are living with a sufferer, it could help them tremendously. For me it’s not about selling the book. It’s about helping to change the landscape. I believe that more and more people are going to have to help themselves because the mental health systems are going to be under such a strain so people are going to have to go into their minds and try to understand what is going on; to be proactive rather than wait.That’s my whole approach, that we have got to help ourselves and help our families and pull together and we can do it. If you create parallel networks of support it’s possible. Maybe that’s a bit too radical, I don’t know.”

“All I know is that the only person that can help me is me.”

sanchitabookcoverSchizophrenics Can Be Good Mothers Too is a rare and beautiful book that truly has the power to change lives. It may be one of the most important books on motherhood written this year. I don’t say this lightly. I wish I had had it when I fell into a deep depression after the birth of my third child, and I wish I had been able to hand it to my friend who stumbled through the terror and confusion of postpartum psychosis. This book offers powerful insight, information, intense personal stories, beautiful poetry, stunning visual art, and above all the life changing message that you are not alone and you can get through this

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