The Neuroscientist Who Lost Her Mind

Struck by a brain tumour, she truly grasped how terrifying life can be for the mentally ill


brain-circulation-110818-02As the director of the human brain bank at the United States National Institute of Mental Health, I am surrounded by brains, some floating in jars of formalin and others icebound in freezers. As part of my work, I cut these brains into tiny pieces and study their molecular and genetic structure.

My speciality is schizophrenia, a devastating disease that often makes it hard for the patient to discern what is real and what is not.

I examine the brains of people with schizophrenia whose suffering was so acute that they committed suicide.

I always did my work with great passion, but I don’t think I really understood what was at stake until my own brain stopped working.

Early last year, I was sitting at my desk when something freakish happened. I extended my arm to turn on the computer and, to my astonishment, my right hand “disappeared” when I moved it to the right lower quadrant of the keyboard. I tried again, and the same thing happened: The hand disappeared completely as if it had been cut off at the wrist. Stricken with fear, I kept trying to find my right hand, but it was gone.

I had battled breast cancer in 2009 and melanoma in 2012, but I had never considered the possibility of a brain tumour. I knew immediately that this was the most logical explanation for my symptoms, and yet I quickly dismissed the thought.

Instead, I headed to a meeting with my colleagues. We were supposed to review new data on the molecular composition of schizophrenia patients’ frontal cortex, a region that shapes who we are – our thoughts, emotions, memories.

But I couldn’t focus because the other scientists’ faces kept vanishing. Thoughts about a brain tumour crept quietly into my consciousness again, then screamed for attention.

An MRI scan later in the day showed that I indeed had a small brain tumour – it was bleeding and blocking my right visual field. I was told it was metastatic melanoma and was given what was, in effect, a death sentence. I was a scientist, a triathlete, a wife, a mother and a grandmother. Then one day my hand vanished, and it was over.

Almost right away, I had brain surgery, which removed the tumour and the blood. I quickly regained my vision. Unfortunately, new lesions were popping up throughout my brain, small but persistent. I started radiation treatments. In the spring, I entered an immunotherapy clinical trial. Shortly before the end of this treatment, my brain really went awry.

It was difficult, at first, to pinpoint the changes in my behaviour because they came on slowly. I didn’t suddenly become someone else. Rather, some of my normal traits and behaviours became exaggerated and distorted, as if I were turning into a caricature of myself.

I had always been very active but, now, I was rushing about frantically. I had no time for anything – not even for the things I really enjoyed, like talking to my children and my sister on the telephone. I cut them off mid-sentence, running off somewhere to do something of great importance, though what exactly, I couldn’t say. I became rude and snapped at anyone who threatened to distract me. I would read a paragraph and forget it instantly. I got lost driving home from work along a route I had taken for decades. I went running in the woods outside my house, barely dressed.

Yet, I wasn’t worried. Like many patients with mental illness, whose brains I had studied for a lifetime, I was losing my grasp on reality.

I came up with elaborate justifications for my behaviour.

I had reasons for everything I did and, even if I couldn’t articulate these reasons, my certainty that they existed reinforced my belief that I was perfectly sane.

I kept sending my doctor detailed e-mail about how great I was feeling. I was excited that I had completed immunotherapy. I felt certain that there was nothing wrong with my brain. This wasn’t just wishful thinking or extreme denial; my world view made perfect sense to me. I still saw myself as a scientist – a master of the rational – and was, in fact, still working hard on other people’s brains, not able to see that my own was crashing.

One day, when I was acting particularly strangely, my family took me to the emergency room. A brain scan showed many new tumours, inflammation and severe swelling. My frontal cortex was especially affected. I had studied this area of the brain for 30 years; I knew what that kind of swelling meant, and yet I showed no interest in the scans. Instead, I believed that my doctor and my family were scheming behind my back and making a mistake by giving in to unreasonable panic. I was frustrated that no one saw the world as clearly as I did.

Despite my conviction that there was nothing really wrong with me, I took the drugs prescribed. Steroids reduced the swelling and inflammation. Then the visible tumours were destroyed by radiation. I was also placed on a new drug regimen intended to kill the melanoma cells in my body.

Gradually, my brain began to work again. Memories started coming back, as if I had awakened from a deep sleep. I could tell the days apart. I could find my way home from work. I began apologising left and right for my strange actions and insensitive behaviour. But the more I remembered, the more frightened I became that I might lose my mind again.

The underlying causes of mental illness are rarely as clear as metastatic brain cancer. And yet I felt I understood for the first time what many of the patients I study go through – the fear and confusion of living in a world that doesn’t make sense; a world in which the past is forgotten and the future is utterly unpredictable. I had tried to fill the gaps with guesses. But when my guesses were wrong, conspiracy theories crawled in.

As terrifying as it was for me, it was even more terrifying for my family. For them, it was not just the prospect of my death that was shockingly painful, but the possibility that my persona, who I was – my brain – might change so profoundly that I would, in effect, vanish before I was truly gone. Or as my daughter put it: “Mum, I thought I had already lost you.”

My latest MRI scan shows that almost all the tumours in my brain have disappeared or shrunk considerably. Against all odds, the combination of treatments has been effective. I still scrutinise my emotions and behaviours, examining my mind over and over for any loose ends. It remains an obsession.

But I am learning to delight in the fact that my brain works again. I can see the sunny street outside and make total sense of it. I can ever so casually extend my arm and call my children, and they will recognise my voice and sigh with relief.

I can flick on my computer and get back to work.


  • Barbara K. Lipska, a neuroscientist, is the director of the Human Brain Collection Core at the National Institute of Mental Health.

Taken from StraitsTimes.Com

I Have Schizophrenia And A Great Job — But For How Long?

schizophrenic-joemI am a woman with paranoid schizophrenia working in corporate America. Of the 25,000 people my company employs, I’ve never met anyone else with schizophrenia. Come to think of it, I’ve never met anyone else at my work with any kind of mental illness, and seeing as approximately 26% of Americans live with mental illness, I can only guess that corporate culture in this country is still stifling the fact that mental illness even exists, let alone how it affects people on a deep level in its own offices.

I personally know two people with schizophrenia and two with schizoaffective disorder (a schizo-type mood disorder — something like a cross between bipolar disorder and schizophrenia). One of the people with schizophrenia I know is my uncle. He hasn’t worked a job since his “nervous breakdown” (that was what my family called it at the time, back when schizophrenia or any other kind of serious mental illness was taboo) somewhere around 1995. I remember standing at the doorway of his apartment with my aunt, his then-wife, watching him talk to someone I couldn’t see. I figured he was just talking to himself — I do that all the time — and didn’t think much of it. The look on my aunt’s face, however, told a very different story.

It was unfortunate for him that his wife eventually left him, because living with schizophrenia is hard enough without having to deal with the regret of failure that indubitably comes along with divorce. When I was diagnosed with paranoid schizophrenia, my father told me that my uncle had been hospitalized more than once during that time. My father told me to never, ever, stop taking my medication. I didn’t listen, of course — why would I? — and that decision got me hospitalized, too.

Just because I don’t know anyone with schizophrenia who works in corporate America doesn’t necessarily mean there aren’t any. But if there were many, I would think I would have met at least one at some point through my mental health advocacy.

I haven’t.

I am also unique, because my all coworkers know I have schizophrenia. Considering I don’t know any of the other people affected by a mental illness at my job, it is likely there are a lot of mental health secrets being kept from management. Such is not the case with me, though.

My boss believes that making connections in an effort to build a circle of trust is what makes a great team. When he found out I was an author, he organized an impromptu conference-room book signing in an effort to build those connections. I was given the opportunity to talk about what made me want to write books. When I was asked about my interest in schizophrenia as it relates to one of my novels, Paper Souls, I told them the whole truth. I wasn’t going to lie about it.

“It’s me,” I said. “I have schizophrenia.”

The reaction is always the same. The room goes silent and people look at you as if you just said you killed somebody. But then they remember they are not supposed to stigmatize people with mental illness and their expressions soften. They nod and someone gives you a hug. “You are an amazing person,” somebody says. “I’m so sorry you’ve had to go through that.”

You would think that in the weeks, months, and years that follow an admission like that, people would treat you differently. They would give you special treatment and go out of their way to be kind to you, because you have a disability. Or maybe, they will fear you. But that’s not what happened, at least not with me. People go on with their lives. They don’t have schizophrenia, so what do they care — as long as you get your work done. People like me prefer it that way, I think. We’ve never wanted any kind of special treatment. We just want to be treated like everyone else. We just want to be treated like we didn’t actually kill somebody, because we didn’t.

That’s not to say life isn’t difficult for those of us lucky enough to escape the stigma in the corporate world (at least for a little while). I know that stigma is still very alive in many professional environments, because I have heard the stories from other advocates. I have been lucky enough not to face that at work.

Sitting at a desk surrounded by white walls while being expected to be normal is no easy task. It is quiet. Scary, sometimes. It is the perfect setting for a horror movie, really. Sitting in your gray cubicle with no sound except eager fingers banging away on keyboard after keyboard until a bloody monster with 300 teeth pops out at you and tells you to kill yourself — because if you don’t, he will kill you. It’s only one person with schizophrenia’s interpretation of the dopamine demon, but every person with schizophrenia gets it. A pressurized environment, packed tight with corporate stress, is a recipe for disaster in a person with schizophrenia’s mind. I live it every day.

There are things I’ve tried to do to make life easier on myself. I’ve attempted to take the dose of meds I’m supposed to take to live a somewhat normal life, but the medication they give people with schizophrenia is not designed to allow a person to wake up at 6 a.m. It is not designed to make a person work a specific shift. We need breaks. We need naps. The effects of the medication are similar to those of marijuana. It makes you tired and slower on the draw than the average person. Our brains aren’t slow; our reflexes are. Disorganized speech is a very real thing for those people with schizophrenia, medicated or not. We are paranoid about whether or not people notice. They know, we think. They know I hear voices.

Have you ever worked in corporate America? Do you think it would be acceptable if you sat in a conference room and watched a person stutter through a two-hour presentation in front of executive managers while looking behind their shoulder in fear? Do you think your boss would ever give that person a high-profile project again? Do you think you would ever get the opportunity to succeed again? Absolutely not.

This is my life. Am I stupid? Am I high? Am I not as good as the other people on my team? No. I have schizophrenia. I drink a lot of coffee to stay awake. My strengths are different than theirs, just as their weaknesses are different than mine. (I just had to ask my boyfriend what the opposite of strength is, because, anti-psychotic medication.)

I’ve tried to work with my doctor on what can be done, such as starting my shift two hours later or working a split shift, but that is not how corporate America works. It is a closed-minded environment that doesn’t allow for special circumstances. So, instead of collecting a disability check that no one would be able to live off of, I cut meds, like every other respectable person with schizophrenia, with a full-time job. I take about a third of what I’m supposed to take, which comes with the risk of a serious relapse I won’t be able to bounce back from. But we do what we have to. We all do, schizophrenia or not.

I don’t know what to do about my struggles as a person with schizophrenia working in corporate America, other than continue to struggle. I have a great job with great benefits that I need in order to survive financially in Los Angeles. Due to the weaknesses that come along with the illness and the debilitating medication, I don’t exceed the expectation like others — I barely meet it some days — but I do get by. My career will likely not go much further — I might even be fired — due to my issues connecting with people, focusing for long periods of time, and getting up early in the morning, but what do you do? Do I risk more stress with the threat of losing everything by plunging into the writing life, or do I just…try harder? It’s the age old question facing every 29-year-old, I think. What to do with my life?

Taken from Refinery29.Com