‘What did he say?’
‘I’ve been having these dizzy spells and headaches and muscle spasms …’
‘Muscle spasms?’
‘He sent me to have a brain scan a couple of weeks ago.’
‘You didn’t tell me.’
‘Didn’t want you to worry. And the doctor said the symptoms might just be side-effects of my medication.’
‘Okay.’ My heart was racing. ‘And what did the results say?’
‘The radiologist found …’ The sound of a page being turned ‘…“a suspected tumour on the pituitary gland”. Is that serious, do you think?’
I turned to face the wall I was leaning against, and struck my forehead on it. If our family had a coat of arms, it would need to feature an emergency siren, a broken heart, a hospital bed, an ECT machine and a bottle of pills.
‘It depends,’ I eventually managed to say. ‘I had a lots of scans when I had my weird brain thing and sometimes what the doctors say can sound unnecessarily worrying.’
‘He’s sending me to see an endocrinologist.’
‘Right.’
‘And a neurologist.’
‘Right.’
‘I hope you don’t mind me calling but I wanted to tell someone.’
‘Mind? I’m glad you called. When is this appointment, with the endo …’
‘Endocrinologist. They said they’d send it in the post.’
‘In the post?’ On private health I had an appointment with a neurologist within a day of my scare, but maybe this was normal on the NHS. ‘Did he give an indication of how long it might be?’
‘I should have asked, but it was quite a lot to take in …’
‘Of course. Do you want me to call him and find out?’
‘Can you?’
‘I’ll call him and find out how serious he thinks it is.’
‘Okay, thanks.’
‘Try not to worry. I’ll go with you to the appointments.’
‘You don’t need …’
‘Look, I insist.’
‘Okay, that would be a help. One more thing.’
The extremity of my right eyelid flickered. ‘Yeah?’
‘I went to see Snow White yesterday with the kids.’
‘Snow White?’
‘The panto in Wolverhampton.’
‘Oh … good.’
‘The kids loved it and I found some bits of it funny.’
‘That’s great …’
I wondered, when I hung up, why she seemed so relaxed, and continued to be struck by her calmness in the weeks that followed, as I kicked bins and hyperventilated in hospital corridors. But I should have understood why: even a possible brain tumour isn’t as bad as schizophrenia. In the course of my reading, I’ve come across a great many analogies that try to convey what it is like to have the illness: a telephone switchboard making faulty connections; a train gradually slipping off the tracks; an orchestra without a conductor; an engine without fuel. But none of these analogies, for me, convey the devastating effect the illness has not only on the sufferer but on everyone who knows and loves the sufferer. It isn’t just a telephone switchboard making faulty connections, it’s a telephone switchboard for the emergency services making faulty connections. It isn’t just a train going off the tracks, it’s a train carrying chemical waste going off the tracks. There are lots of horrendous diseases out there, that rob you of your dignity and bodily functions, that kill you, but to have one that robs you of your sense of self, makes you frightened of your own mind, those who you love frightened of you … There is little worse.
I’ll save us all the precise details of the weeks of agony that followed, but, needless to say, it all began again: frustrating dealings with the NHS; a series of consultants, one more punchable than the next; the simultaneous desire to be there and to run away; the suspicion that some people just don’t matter; the feeling of being overwhelmed by too much narrative; the intense wish that I had more money to make my sister’s life easier, if only on a practical level. However, in the end, she had the tests, it was established that the tumour was tiny, and while it needed to be monitored, her symptoms were most likely side-effects caused by her medication, which might have to be changed.
I don’t think I’ve ever felt as relieved as I did after the final appointment. I wanted to hire a Rolls-Royce, buy a crate of Cristal, and bathe in the contents while being driven at illegal speeds down the Stafford Road. But, instead, my sister and I settled for a celebratory cup of tea in the terraced house she shares with her husband – who has given up market-trading for taxi-driving – and two young daughters in Blakenhall, the area around the Dudley Road.
The size and inner city location of the house aren’t the only things that remind me of the house we grew up in. The furniture, decor and layout are identical too, right down to the display cupboard in the front room. Though while ours was full of crystal glass – given to us by relatives who ran a taxi firm and received it as loyalty gifts from Esso – Puli’s is full of photographs, of her two daughters and the four of us brothers and sisters when we were younger. Between the pictures, ornamental clocks, all set half an hour fast, a fact that always reminds me of a documentary I saw about Prince Albert Edward, who apparently devised the idea of ‘Sandringham Time’ for his estate, advancing all the clocks by thirty minutes to make the most of the winter daylight hours for his passion for shooting. Though the reason for Blakenhall Time is slightly less frivolous: the drugs Puli takes for her condition make her tired, late for things. Putting the clocks forward is a way of tricking herself into being on time.
I chinked my mug against hers when she came in with the tea.
‘Congratulations!’
Puli smiled and laughed a laugh that reminded me of gulab jamans at Diwali and fairy cakes on Saturday afternoons.
‘Sorry if I was a bit panicky through some of that. I could probably do with some of your medication …’
‘Ha.’ Puli kicked off her shoes, revealing bare feet. ‘When I went for that CT scan I was talking to the nurse and said, “I’m worried I won’t be able to look after my children if I get ill.” She just stared at me like I was … well …’ It’s weird how so many everyday expressions in the English language are related to insanity. ‘I think she couldn’t believe that I didn’t see myself as ill. I take a list of medication that high, but I don’t see myself as ill. I don’t think she could believe I was functioning.’
‘I don’t know how you manage sometimes.’
‘Probably looks easier than it is. One of the odd things is how much it changes. Last month I felt so good that I was thinking about getting a part-time job. But then recently even the housework, and making the family dinner, seemed too difficult.’
‘You have had all these problems recently, though.’
‘True. And at least I’m not as bad as Dad. It’s like that book said …’ Puli is an E. Fuller Torrey fan too. ‘… I have a lot of the positive indicators for the illness, whereas Dad has a lot of the bad ones. Also, I’m lucky in that I’ve had an education, whereas Dad hasn’t. And with that education, I’ve done work on myself – my own beliefs and faith – and that has helped me. Helps the kids are great too.’
I can vouch for my two nieces. Whenever I think of them now, I recall their behaviour during a recent weekend they spent with me in London, specifically a moment during our first day, when, after we had been to the London Eye, and before we had got to Buckingham Palace, it seemed they were struggling to keep up with me and Mum. When I asked if they were okay, they both said they were tired, but looking at their mother, I spotted the real problem: Puli was struggling to keep up, but they didn’t want her to feel bad. And sure enough, when my sister admitted she needed to rest, and I arranged for a taxi to take her back to my flat, they sprang back to life and we spent the next three hours on the tourist trail. I suppose this is another thing about Puli’s life that reminds me of the past. Her daughters’ eagerness to please – it comes as no surprise that
her eldest is top of her class in almost every subject – reminds me of how we used to be. In so many ways, schizophrenia continues to shape our family.
Puli put down her tea and asked, ‘Do you mind if I say something?’ If I had a penny for every skipped heartbeat … ‘There’s something I’ve been meaning to say.’ She pulled out a sheet of A4 from underneath the table. It was covered in her handwriting, in three different ink colours. ‘You remember when you started your book, you said if I wanted anything taken out or included, you would do it?’
Of course I remembered. And the surprising thing was that Puli barely asked for anything to be removed. When she called in tears after reading the first thing I sent, I thought I would have to give up on the idea of writing about our childhood. But it turned out she had not been upset about the things written about her, but by reading about me and Bindi transcribing the lyrics to ‘Club Tropicana’. It had made her realize that while we were having fun, she was lost to her illness. So much of her childhood had been stolen from her.
‘There’s one thing I’d like you to mention …’
‘Of course …’
‘I’ve written it down … because …’
‘I understand. I find it easier to say things in writing too.’
She began reading from her notes, laid out on her lap. ‘You see, as a kid I always worked hard and was always busy. If I wasn’t doing homework, I’d be doing housework for Mum, or cooking or doing budria or running errands like collecting medicines for Dad from the nearest chemist – it was a mile away. I never stopped, I was always doing something, but as I started to get ill, I started to slow down. And once I was on medication, I did less and less, began to sleep more, even in the day …’ She turned the page over ‘… sometimes. And maybe because people didn’t know I was ill or maybe they wanted to put me in my place, because Mum used to boast about me, they would often suggest I was being lazy. They would say things like: “Aren’t you working? What do you do all day?” And that’s all I want to say really. I’m not lazy.’ I could see that she had written the following words in capital letters. ‘I have never been lazy. I’ve had knock-backs and needed to take it easy sometimes but I’ve always tried to do something with my life …’ The ink switched from red to blue. ‘I have never stopped having goals. To be honest, especially a few years back, when the kids were small, I started achieving positive results. But the criticism continues and there is always someone, somewhere, by phone or at family gatherings, who will turn and say, “You still not working?” Sometimes the concern is genuine, but it’s also cruel …’
I interrupted. ‘Thing is, Puli, a lot of the family don’t know you are ill. You’re a victim of your success, in that way. People think you’re fine.’
‘Maybe that’s true.’ She folded over her notes and tucked them between the pillow and arm of her chair. ‘It’s still painful though. I’ve actually worked very hard, fighting against the symptoms and the side-effects of the pills, at the same time as cooking for my husband at three or four in the morning so he has hot meals to take to work, when he was on the markets … it can be so frustrating … sometimes I punch pillows in the living room to get rid of the frustration.’
‘It must be so difficult.’
She placed both hands, palms down, on her lap. ‘Anyway, another thing that Torrey book said was that people can reach their fifties and sixties and then the illness can just go, for no reason.’
‘Did it say that?’ I took a biscuit. ‘It’s a strange illness. Another weird thing is how it tends to strike people at a specific age, whereas many other mental illnesses, like depression, can strike at any time.’
‘I think I would have got stronger if I hadn’t got ill. I had enough strength with my education, to get out of the trap. I would have gone to university, escaped, but then the illness got me again. I can’t help thinking my life could have gone a different way.’
‘It could have …’ The guilt.
‘And I can’t help wondering why it happened, what it was that triggered it.’ She scratched the back of her hand, leaving red marks that quickly faded back to brown. ‘Why did two people in our family have to get it? But then I suppose bad things happen to people all the time, and I should count my blessings. At least the kids are healthy and, you know, at least I don’t have a brain tumour.’
Laughter in the dark.
She bent over, put her hand underneath the base of her armchair, rummaged around and pulled out an empty crisp packet.
‘The kids! God, they just don’t listen!’ A glance at the clock: 1500 hours Blakenhall Standard Time. ‘Do you mind if I shoot off now? I’ve got to pick them up from school.’
Everyone affected by the illness in the family, even those who didn’t realize it was an illness, has, inevitably, like Puli, wondered why. And they have all come up with different answers. For my grandmother, my father fell ill because my mother, for some perverse reason, had dabbled in black magic and put a spell on him. According to an uncle, my grandfather believed my father got ill because a bull had kicked him in the head when he was a child. According to another uncle, my father’s ‘blood pressure was too high and the doctors reduced it with electricity’, i.e. ECT.
As it turns out, these explanations aren’t much more preposterous than many of those put forward in the West. At various points through history, mental illness has been blamed on the devil, masturbation, character weakness, and for much of the twentieth century many blamed bad mothering: so-called ‘schizophrenogenic’ mothers were thought to have so corrupted their child’s development that when their offspring entered the real world, they went mad.
Meanwhile, there are real people in the real world today who argue that schizophrenia doesn’t actually exist. Thomas Szasz, an American psychoanalyst commonly cited by Scientologists, argues, for instance, that people with schizophrenia have a ‘fake disease’, that schizophrenia fails to stand up to scientific scrutiny, that psychiatric practice is nothing more than a legitimized form of social control that uses medical terms such as ‘treatment’, ‘illness’ and ‘diagnosis’ to deprive ‘sufferers’ of their liberty.
Evidently, what Szasz needs is a ‘kick’ in the ‘bollocks’, but the reason people like him are able to get away with such ludicrous arguments is that nobody knows why people get schizophrenia. Even if you persevere with the eye strain engendered by reading scientific papers with titles like ORBITOFRONTAL CORTEX VOLUME LINKED TO BEHAVIORAL AND NEUROPSYCHOLOGICAL DYSFUNCTION, the only thing you’ll discover is that there is as much agreement about the causes of schizophrenia as there is agreement about the meaning of Shakespeare’s plays.
All that can be said is that there are interesting patterns. It has been variously established, for instance, that individuals with schizophrenia are born disproportionately in the winter and spring, are born and/or raised disproportionately in urban areas, that the prevalence of schizophrenia is significantly higher among higher castes than among lower castes in India. Other curious research findings include reports that sufferers have more complications during their mothers’ pregnancies and births, the discovery of an inverse association with rheumatoid arthritis – individuals with schizophrenia almost never get it – and the fact that while the majority of individuals with schizophrenia smoke cigarettes, the lung cancer rate among them actually appears be lower than in the general population, not higher, as you might expect. And then, of course, there is the fact that the disease runs in some families.
Which brings me to the subject of Miha Singh, referred to simply as ‘Meemal’ in documents relating to my father’s farmland: my father’s grandfather, my grandfather’s father, the head of the family, whose farmland my father would have spent his life cultivating if he hadn’t come to England, whose farmland I will in part inherit one day. Of course, I had enough on my hands trying to get my head around my parents’ story, but Meemal’s name kept on cropping up during conversations, and five facts about his life intrigued me: (i) he had only one son, my gra
ndfather (and such a low number is unusual in my family); (ii) he died young (when my grandfather was just ten, apparently); (iii) he was a teacher in Patiala (which is odd given how poorly educated my family are); (iv) my aunt Bero claimed he had ‘the ability to listen through walls’; and (v) his wife left him for another man in the village.
My mother fell silent after blurting out this last fact. ‘I don’t want to be advertising such scandal,’ she remarked when I pressed for further information. ‘Imagine what people will say.’ Which gives you a sense of just what a big deal this was. Nearly a century may have passed, and Mum is only related by marriage, but she still feels intense shame. I continued to get the tight-lipped gypsy treatment whenever I raised the subject with relatives passing through my parents’ house. ‘Well, she was a whore,’ remarked one elderly and distant relative. ‘That’s why she left him. She behaved like a white woman.’ Another two relatives mentioned that Meemal beat his wife. Why did he beat her? ‘His brother worked on the farm and was envious of his life as a teacher,’ said one. ‘So he fed him stories about how his wife was misbehaving when he was away and that made him angry.’ But another came up with an infinitely more intriguing explanation. ‘He went mad. He became so educated that he went insane.’
This wasn’t the first time I’d come across the notion that education could send you around the bend: my mother spent most of my degree worrying that my reading was going to make me loopy. But it was the first time it had occurred to me that Meemal, the head of Dad’s family, may have suffered from schizophrenia, that three generations of my family might have had the disease.
It was a fascinating question, but also a question I couldn’t possibly answer. The disease is hard enough to diagnose in the living – let alone in someone who has been dead for almost a century – and given the difficulties of assembling my parents’ narrative, I had no chance of finding out what happened two generations ago. Punjabi genealogy is a futile business: no amount of tapping names of relatives into census-return websites, travelling to places of historical significance at visually striking times of year, was going to fill in the gaps.*
The Boy with the Topknot Page 29