‘Why do you always have to wind him up?’
Good question, Dad. Bloody good question.
But there was only the shortest of pauses before Mum and I started arguing about something else of vital importance: whether the fare to the town centre was £1.20 or £1.30. Mum based her view that it was the former on having watched people pay in the past (she herself has a free bus pass). I based my view that it was the latter on a notice in English at the bus shelter.
‘Even if it is £1.20 and I give them £1.30, it’s hardly the end of the world, is it?’
‘But why throw away ten pence? That’s ten pence that could be donated to the temple.’
‘And what will they do with it? Build another hall for religious ceremonies that nobody understands?’
‘Oi.’ It was a cheap shot and I’m not sure I meant it. ‘You shouldn’t talk like that.’
‘Trust me, it’s £1.30.’
‘It’s £1.20.’
‘It’s £1.30. IT SAYS HERE.’ I jabbed at the sign. ‘If you’d agree to taking some English lessons, you’d be able to read the sign and find out for yourself.’
‘You know I’m too old to learn English …’ Sometimes my mother’s defeatism defeats me. ‘My head hurts too much to concentrate. Even making your father’s meals is a struggle. Anyway, believe me: it’s £1.20.’
Mortifyingly, when the bus pulled up there was a sign next to the hydraulic doors stating: maximum off-peak fare £1.20. As I foraged for the correct change, a receipt for dinner with a friend in London the night before – £150.48 – fell out of my wallet. I grabbed it before Mum spotted it – she can’t read English, but has a superhuman ability to spot evidence of overspending – and, while she managed to resist crowing, I took a seat next to Dad, in the area usually reserved for the elderly and disabled, and spent the journey reading the adverts (‘Earn up to £30 a week with EMA if you carry on learning after 16’; ‘Targeting Benefit Fraud’; ‘Army: Be the Best’), and noticing that the old unspoken seating plan was still in place (Indian women and pensioners downstairs, anyone under the age of eighteen upstairs at the back, the unemployed – presumably the only able-bodied adults of pre-pensionable age who use buses at this time of day – taking the remaining space).
We stayed on the bus to the station, where I noticed the colour scheme had changed from a migraine-inducing green and yellow to a vomit-inducing orange and blue, but where everything else was as I remembered from my teenage years of bus travel. Even some of the people milling around the alphabeticalized stands were recognizable from 1995: the Express & Star salesman, exclaiming, ‘Townfinal! Townfinal!’ (even though it should surely have been ‘cityfinal’) with a fag hanging from his scabby bottom lip; the lad with Down’s syndrome who walked around asking to shake the hands of strangers. Another bus took us to the front door of the Croft Resource Centre in Bilston, where the receptionist, protected from the potentially violent clientele by a thick plastic screen, told us to take a seat in the waiting room.
A friend once remarked to me, in a rambling late-night drinking conversation, during my pre-schizophrenia-awareness days, that a sure-fire way of assessing whether someone was mentally ill was to yawn repeatedly in front of them. If, at some point, they didn’t yawn in response – apparently the instinctive reaction of most human beings – it meant they were incapable of empathy, and therefore clinically insane. But judging from the people waiting to see a psychiatrist in that room, there was a more efficient way to diagnose loopiness. If someone walks into a hot room and doesn’t remove their anorak, the chances are that they are nuts. In the middle of the room a middle-aged Indian man in an anorak stood still, utterly immobile, staring at his feet. He was wearing Denis Norden-style spectacles and humming to himself as if in pain. On the sofa opposite us there was an elderly, turbaned Indian man in an anorak. He was holding his hands up as if doing an impression of a cat. Next to him was an Indian boy of my age, in an anorak, with a fixed look of surprise on his face. The only person not in an anorak was a white teenager who shot in soon after we’d arrived and did several manic laps of the waiting room before heading to the hifi (how odd to have a stereo in a waiting room) and tuning it to a pirate station, adjusting the graphic equalizer until the bass line to ‘Get Your Freak On’ by Missy Elliot made the arms of my spectacles vibrate. The music had Mum massaging her temples (migraine brewing), and, until I grabbed her and forced her to sit down, had my niece demonstrating something she called the Barbie dance. Throughout, Dad, sitting next to me, looked into the mid-distance.
I tried not to appear phased, but it must have been obvious from my fixed smile that I was thinking: what the hell am I doing here? Simon Cowell once called me on my mobile, for God’s sake. Moreover: what was my father doing bracketed with these loons variously twitching, standing catatonic, walking in circles, shaking, sucking, grunting, and dribbling?
Having since gone back to the Croft on several occasions, and spent time with Dad at his Asian Men’s Group meetings, I’m ashamed at my attitude then. What was Dad doing with these people? He was one of them. It was just that I could see the man underneath the symptoms and side-effects. And when I made some effort to get past their symptoms and side-effects, these other men became as vivid as Dad. The man with catatonia – who stood in that position for the half-hour we waited – was a highly intelligent graduate with a degree in economics. ‘I’m not physically sick, just mentally sick,’ he told me during our first chat. ‘The doctor diagnosed me with psychosis. I didn’t know what it meant. I had to look it up in a dictionary.’ A wry smile. Meanwhile, the Indian boy with the surprised expression on his face was dazzlingly articulate about his condition: schizophrenia. ‘The worst thing is not being able to feel pleasure,’ he said. ‘Can you imagine what that’s like? Not being able to feel happy on birthdays, at Christmas, when you see your friends?’ It was, I think, the saddest thing I have ever heard.
Meanwhile, the staff, whom I had down as public sector parasites, making a living from the suffering of others, turned out to be angels. The thirty-eight-year-old man who helps run my father’s day centre group at the Croft, Vuijay Malhan, is a volunteer, and has been working for free ever since his wife was diagnosed with bipolar disorder. Meanwhile, Gurbax Kaur, the glamorous young woman who set up the ‘Positive Participation’ group for Asians with mental health problems, fights a constant battle for funding, and reluctantly admitted to me recently that she sometimes uses her own money to fill gaps. You could mug these people, kick them in the face, vomit on their shoes and they would still have time for you. But all I could do as we waited to see the doctor – with my private health cover I’d forgotten how much hanging around is part of the NHS customer service experience – was sneer, and look away at the walls. Not that there was solace to be found there, as they were decorated with paintings by the patients of a distinct Hieronymus Bosch quality and poetry that went along the lines of:
Endurance
What is Life?
Life is Repetition.
What is Hell?
Hell is Repetition.
What is Life?
Life is HELL.
It was truly a relief when my father’s psychiatrist called out for us.
‘Jugjeetsion?’
What struck me the first time I met the Indian-born, Indian-educated, Indian-trained Dr Patel is the same thing that strikes me whenever I see him now: just how superlatively Indian he is. He hates to say no. He gets over-emotional as he talks about the home country and the glory of Indian culture. He does that yes/no headroll that sometimes means yes, sometimes means no and sometimes means nothing at all. You almost expect him to present you with garlands of white jasmine and orange marigold flowers as you enter his office. And it is an office, rather than a surgery: the ailments he treats not requiring the use of stethoscopes, blood pressure monitors, and other medical paraphernalia.
The three of us took chairs while Dad remained standing, as if in the presence of royalty. With varying deg
rees of patience, Mum and I suggested he sit down, as Dr Patel shuffled through the pile of folders on his desk.
‘I haven’t seen you before,’ he said eventually, looking at me over the lenses of his rimless glasses. ‘I think I met your brother once.’
‘Yes.’ An all too common pang of guilt. ‘He has come the last few times. But I wanted to come today. I want to learn more about Dad’s condition.’
‘No problem, no problem. Yes, yes, yes. Now let’s look at your father’s notes …’ The pile of papers in front of him was thicker than an edition of the Yellow Pages. ‘Now, the last time I saw your father was …’ He flicked through a few sheets on the top of the pile ‘… six months ago. Though, of course, he comes here to the day centre every week. He greets me sometimes and we say “namaste”, “sat sri akal”, etcetera, and he is under constant kind of review.’ More flicking. ‘I try and spend time with a person to get a rapport going. It’s important you know your patient by name. My Punjabi isn’t very good, but I can make myself understood to your father in Hindi.’
His attention reverted to the notes as Dad opened his carrier bag and started piling up his medication on the doctor’s desk: the pills I’d found in that margarine box all those years earlier. Without looking up, Dr Patel said: ‘You see, essentially, he’s been on just one medication.’
‘But aren’t there five different pills there …’
‘Ah, you see, this one [picks up one box] is for his blood pressure [slaps it down again], this one [picks up another box] is for his heart [slaps it down again], this one [picks up another box] is for his blood sugar [slaps it down again]. The only one for his mental health problem is this, the Quetiapine. And then there is the monthly injection of Modecate.’
‘What’s the injection for?’
‘It has almost the same function as the Quetiapine.’ The yes/no headroll. ‘It ensures that if he misses out on the tablets – because people with your father’s condition are very likely to forget about, y’know, the regularity of taking medication – there is a back-up to ensure he doesn’t deteriorate beyond a certain point. Other than the calming effect, it is a mood stabilizer. The idea is to keep him on an even keel …’
The words ‘even keel’ ran through my mind with assorted images: no tears at his mother’s funeral; being told to smile for pictures at my brother’s wedding. But how many of these things were symptoms of the disease and how many side-effects of the medication? I was about to ask when my niece suddenly leapt up and exclaimed, ‘Lollipop!’ to no one in particular.
‘No, no, that’s the other doctor,’ said Mum to her in Punjabi. ‘No lollipops here.’ My brother’s children and my mother talk different languages but they still manage to communicate somehow, a little like Dr Patel and Dad with their respective Hindi and Punjabi. Dr Patel eventually peered up and shouted some Hindi in Dad’s direction.
‘And how are you, Jugjeetsion? Teek, taak?’
‘Teek, taak,’ Dad replied. He was smiling. ‘I’m very well, nothing wrong with me.’ He leant forward. ‘I tell you, in our group … the day centre group … there’s only two of us who are well. The rest are mad.’ Dr Patel and Mum laughed. ‘I’ve the sugar illness, that’s all.’ Diabetes. ‘Nothing else.’ Sitting back, he continued. ‘I know what’s what. The body, you see … is made of numbers, isn’t it? And my numbers are absolutely fine. Dr Patel, sir … You know, what I told you yesterday? I was right, wasn’t I? Remember what I told you about the sun, and about how our family comes fiftieth in the list of doctors … about the two governments run by the whites? I was right, wasn’t I?’
Dr Patel smiled professionally, Mum rolled her eyes, and I struggled to take it all in. Mum had warned me to be prepared to see Dad behave differently – he is always animated with doctors, because he worries they might hospitalize him, she’d said. But I was still stunned. I’d never seen him so animated. And I’d never heard him talk so incoherently.
‘Does my father always talk like this to you?’ I asked Dr Patel in English, knowing my father wouldn’t know what I was saying. Sometimes a language divide can be handy. ‘To be honest, I’ve never seen him like this before.’
‘You know, he has been stable with no gross concerns for some time, but …’ My niece jumped on to my lap ‘… I’m just going from what I see of him when he comes into the day centre, from the way he functions within the group – and I discussed this with your brother last time – I think we may need to have a look at his medication.’
‘What does the medication actually do?’
‘Controls the symptoms. His mental health condition, unfortunately, has no cure. In controlling the symptoms of his schizophrenia we try to see what is the best lifestyle can come out of it. But even with the most effective drugs, people with your father’s illness continue to have problems and require a range of support from the family and the community.’
My niece began singing and I talked over her. ‘I don’t know if you’ve seen my father reading papers and watching TV – he’s quite obsessive about watching BBC Parliament, for instance. Are these symptoms of the illness?’
‘Yes.’ Dr Patel removed his spectacles and looked at me. ‘What can happen is … again, it’s part of what we call the paranoid spectrum of behaviour. People with schizophrenia may think that things in the environment have a significance to them … they might see someone talking on TV and think, hey, this guy is talking about me. Maybe when they read the paper, they think they are being written about. Though it’s hard to tell completely with your father at the moment …’ He replaced the spectacles. ‘His behaviour isn’t out of control, but if he is becoming more delusional, it is better to nip the thing in the bud than wait for it to get worse. You see, he has only been on a kind of maintenance dose at the moment. But I’ve been monitoring the situation, and I think it would be good for him to increase it a little.’
I gave a synopsis of what the doctor had said to Mum, in my bad Punjabi, she agreed Dad needed extra help, I asked if she had any questions, and she said no, and then I asked the doctor if he could explain the medication change to my father, who was beaming as we talked.
‘Oh, yes,’ Dr Patel responded to me in English. ‘We will explain to him gently in a language he understands … I will put it to him … I don’t know Punjabi very well, but he tends to understand me. We have a positive relationship, which needs to be maintained for therapeutic reasons. He could become very paranoid about a new doctor. Continuity of care is a concept in schizophrenia, especially with the paranoid variety of schizophrenia. Change can lead to problems. Changes will always throw him off balance.’
Dr Patel raised his voice and changed his tone to explain the medication change to Dad in Hindi. ‘Jagjit Ji – we need to talk about something. Your tablets. You take two tablets at the moment?’
‘Yes, one at twelve, one at five.’ Still smiling.
‘You see, to keep you well, we need to change your medication … the same number of tablets but we are going to go from 200 milligrams to 300 milligrams.’
‘The tablets are staying the same, but the number is changing?’
‘That’s it,’ said Dr Patel. ‘Is that okay?’
‘Twice a day still?’
‘Yes.’
‘That’s fine.’
Dr Patel gazed back at me, frankly, and reverted to English. ‘You know, because of the chronic nature of the illness, your father is only doing as well as he is because he is in a family setting. Anything other than that would be very detrimental for him. Honestly.’ Dad began putting his medication back into his carrier bag. ‘Nobody’s bothered about what you’re doing in this society. Too much individualism has got its own flipside. You need your relatives, your family, your friends around you. Your mother will have been under a lot of stress during her life, to be honest.’ I nodded as if I understood, but I didn’t have a clue. ‘Indian families manage to cope somehow, because the whole family rallies around to give the necessary support. In the Western populatio
n – families break up like mad and the outcomes are bad. A similar individual of white origin would be in a nursing home by now.’
At the time I thought this was just Dr Patel being patriotic. But it turns out he is right. Several studies have demonstrated that people who have schizophrenia in developing countries such as India, and people from such cultural backgrounds, have a better chance of improvement than those who live in, or are from, the industrialized world. Various hypotheses have been put forward. One is that there are more opportunities for employment in the third world, and a meaningful social role aids recovery. Another possible explanation is that families with so-called ‘high expressed emotion’, high rates of damaging emotional involvement with an unwell relative, are rarer in Indian than European communities. It may be that abnormal behaviour is tolerated to a greater degree by Indians, which is good for a sufferer. This has certainly been the case with Dad: his odd behaviour has been so tolerated by the family that I have been unaware of his condition for most of my life. Which raises the strange possibility that perhaps our lack of awareness has actually been good for him.
‘But you should try not to worry,’ Dr Patel continued, his eyes moving back to his sheaf of paper. ‘His behaviour is very controlled for a big man. Had he turned violent, he would have been difficult to restrain.’
‘Has he ever been violent?’ I asked.
The yes/no headroll.
‘Do you know about what happened to him when he was first diagnosed?’
The yes/no headroll gathered momentum. ‘I don’t really know that – no one has given me that information. And these …’ He lifted up his thick file ‘… are sketchy things. What happened thirty years back I don’t know, except that he was affected at a relatively young age and the younger you are when affected, the worse the prognosis.’
The Boy with the Topknot Page 13