Back to "tonia"

I hadn't planned to write again about my dystonia, but as you'll see, I'm now obliged to do so.

I'll keep this brief. I acquired lingual dystonia in Cambridge between March 5-8. The cause of this disorder is essentially mysterious and the condition is very stubborn, and in my case there was absolutely no improvement for a couple of months, during which I could only mumble. However, now the time-reverse of the original process has occurred. Between May 16-19, in Cambridge again, the dystonia started to go away and by the evening of May 19 (two days ago) my speech had become "normal" again, or very close to it.

I'm delighted and grateful to be able to speak clearly again. Though this is a problem that can in principle recur, I feel I should share the good news right away (specially in view of this old blog posting of mine on the topic of sharing good news!). And I'd like to thank the many caring and supportive readers who communicated their kind words to me during these last few months.

Why did the improvement take place? Not because of the Cambridge weather for sure! It's grey, cold and gloomy now, exactly as it was from March 5-8. And my general health is not better, or worse, and I'm not more cheerful, or less, than at any other time. So the reason is perhaps Clonazepam, or perhaps the passage of time.

But it's best if I just follow my doctor's excellent advice: "never question why you are better".

Buying drugs

As I've recounted in a previous posting, a couple of months ago while in Cambridge I acquired a neurological disorder called lingual dystonia that affects my speech. On returning to Bombay I was fortunate to get a quick and accurate diagnosis from a leading neurologist. However treatment was a different matter. One cannot treat the disorder but only the symptoms. It took more than a month, and two more neurologists, to get the course of medication right. But at the end, when everything seemed under control, I ran into an unexpected problem which taught me something about the law and its "enforcement" in India, and the impact on medical patients. Read on.

The first neurologist prescribed two medicines, one of which is Clonazepam, an inexpensive (Rs 15 for 10 pills) anti-anxiety medication with few side effects that is considered to be always helpful with dystonia. The other medicine, Trihexyphenidyl, is more expensive and specialised, does not always work, and has awful side effects as I can now testify. I bought both of these medicines from one of the row of medical shops right outside Bombay Hospital. The shopkeeper was friendly and even gave me 5 percent off because I was short of cash and he wanted to save me a trip to the nearby ATM! It was my first day back in India and I was delighted at this affectionate and helpful behaviour after cold, clinical England. I should mention that the shopkeeper carried out his legal obligation by carefully examining the prescription and noting down the doctor's details.

Some weeks later I consulted a different neurologist at Jaslok Hospital, who told me to continue Clonazepam and also switched me from Trihexyphenidyl to Tetrabenazine (which also has side effects including depression, which really wrecked me for several days). I had some Clonazepam but needed to buy more of it, and he gave me a fresh prescription. But I found that in the downtown area of Colaba where I stay, the many dozen pharmacies all stock Trihexyphenidyl and Tetrabenazine but not a single one stocks Clonazepam. So I bought it at the same shop as before, outside Bombay Hospital, about 3 kilometres away. The same shopkeeper was again friendly and again took down the doctor's details, carefully checking the spelling of his name (he also seemed to remember me as the person who had run out of cash on the previous occasion).

That was three weeks ago. On my visit to the doctor last week, he agreed to stop the Tetrabenazine which was not helping. But he felt the Clonazepam was working and I was slightly better. So he gave me a new prescription for it, asking me to continue it for a few months. Since I still had some of it left at home, I didn't bother buying a fresh stock the same day.

Now on Sunday I was to return to Cambridge, so on Saturday evening I went to the Bombay Hospital area with my prescription to buy some more Clonazepam to take with me. I thought it would be as simple as before but was in for a huge surprise. The familiar shopkeeper turned rigid when he saw my prescription, looked the other way and said it was out of stock. He refused to talk to me or advise me where else to look for it, except to "try the next shop". I tried all five shops in that row and in all of them, got the same response: Clonazepam (brand name: Epitril or Rivotril) was out of stock. माल नहीं है ("we don't have the stuff"). Try the next shop. 

More surprising was that everyone would freeze and look away when I even tried to discuss the matter, or ask where then I could get my medicine. In desperation I used my mobile to call my neurologist. He thought maybe the shopkeepers would have Lonazep, a different brand that's equivalent, so he suggested I hand my mobile to them so he could explain this directly to them. But they refused point blank to talk to him. They just kept freezing and looking away more and more, and the atmosphere became rather creepy and hostile so I walked away from the area dejected.

My doctor then suggested I try Saifee Hospital, an impressive new hospital a couple of kilometres away where I've always had a good experience. So I took a cab there and entered their neat and small pharmacy, which had an actual pharmacist in uniform. He took my prescription, solemnly checked the stocks on the computer and confirmed that they had Lonazep in stock. His assistant pulled it out of a drawer. And then, just as I thought my problem was solved, he froze. "The prescription is not dated today", he said. "So what?" I asked. "It's just four days old." He replied that I might have filled it elsewhere and be coming to him for more. So I began to understand the issue. Clonazepam, like all benzodiazepenes,  gives one a pleasant and relaxing feeling and is therefore sometimes abused as a recreational drug.

I explained that I was a legitimate patient and hadn't filled the prescription four days earlier because I already had some of the medicine at home. He repeated his objection and said he would not fill a prescription unless it was dated today. I said I understood the concern, but surely even if it was dated today, someone could fill it elsewhere and then come to him and get some more? So the abuse he was worrying about couldn't actually be stopped just by having today's date?

He froze more and more and then rudely told me not to argue with him. He also refused to talk to my doctor on the phone and disappeared into the back of the shop. One more panic call to my doctor. As he practices at Jaslok Hospital, another 3 km away, he kindly phoned the pharmacist there, revealed his identity and verified they had Lonazep and would fill my prescription. So I took a cab to Jaslok. I thought I saw the pharmacist freeze when he saw the name of the medicine, but he slowly regained some mobility and sold it to me. So that was the end of my troubles that day. After another cab ride home to Colaba, I had spent two hours and 250 rupees in cab fare to get 60 tablets of a medicine, collectively worth 90 rupees. This medicine is the only thing that helps my neurological illness, and I have four prescriptions by three leading neurologists all bound neatly in a file, but despite this while shopping for it I had been looked at and spoken to as if I was some sort of drug addict!

 Why did this happen? The shopkeepers would not even talk about it, as I've indicated. But in the past the police have been known to raid pharmacies to check up on the sale of benzodiazepenes. There must have been a raid that day, or recently. Or maybe there was a rumour that there was going to be one. I admit this is speculation on my part but I've never, ever, encountered this kind of reaction when buying any other prescription drug, such as antibiotics or even the awful Trihexyphenidyl.

I was lucky to have the time, the money for cab fare and the energy to travel all over town in pursuit of my medication. But what would happen to another legitimate patient without some or all of these assets? The utter rudeness of all the shopkeepers indicated they must have been terrifed of the police. Also I have never before been told that a prescription can only be filled on the same day. I suspect this "rule" was simply invented by the pharmacist at Saifee. I would appreciate feedback on this from informed readers, because if such a rule does not exist then I'm afraid he behaved unprofessionally and I'd be inclined to complain to the hospital. Though again, the police could be ultimately to blame for his fears.

In the end, recreational users always find shady sources to access their drug, so it's mostly genuine patients who have to put up with the runaround and stress just to buy what they really need. And funnily, one thing that makes neurological disorders worse is stress! In my view there needs to be some kind of legal protection in place for the patient in such cases. If pharmacies are (correctly) penalised for selling certain medicines without a prescription, they should also be penalised for not selling them when there is a valid prescription. And the police, when checking up on medical shops, should be careful and correct rather than intimidate the shopkeepers. They need to think carefully about the potential consequences of their actions on legitimate patients.

Perverted alchemy

"Resume work or quit": this headline from today's paper may appear to refer to Air India pilots, but it refers instead to teachers of Bombay University. Apparently they have "refused to participate in evaluation work across state universities". A box in the middle of the paper says "City aghast at a great institution's downhill ride".

The situation with Air India is hardly any different. I'm blogging at this moment instead of being somewhere over Dubai on a London-bound flight, only because of the ongoing strike. The striking pilots belong to the international segment of the airline, which is known as "Air India". Their demands are, apparently, that they get exclusive rights to train for the new Dreamliner aircraft, instead of sharing this training with pilots in the domestic wing of the airline, which is confusingly also known as "Air India" (a few years ago it was called "Indian Airlines" and while there was little logic in the naming system, at least people knew what was what).

So is India full of lazy teachers and selfish pilots? That certainly is the subtext of most newspaper articles and middle-class complaints (how selfish of them to do this in the summer season! who is going to compensate us for the lost vacation! etc etc). A colleague of mine yesterday argued eloquently that the AI pilots are a spoiled lot who want not only their immediate families but parents, in-laws and grandchildren all to have the right to free flights in First Class aboard India's nationally owned jetliners. Apparently this was the source of a previous strike. This colleague gets his facts right, so I don't doubt his word. Likewise, I assume (though I haven't checked) that Bombay University teachers are indeed refusing to participate in the allotted work. A leading retired judge feels this is a sign of a "general decline in our character".

But is that it? The press does point out that political interference has precipitated the decline in both Bombay University and Air India, and most would agree with that. So is it the problem that politicians have hired "sub-standard" pilots and teachers? Or has the political interference somehow turned people lazy, interested only in free flights, selfish about shared training? Is it "genetics" or "environment", to make an analogy?

This is a point that I find important but is rarely raised. A nice anecdote was recounted at the TIFR tea table yesterday. In some institution, a survey found 30% of staff were highly motivated and over-performing, while the rest just did what they were told. But then these 30% were plucked out to form a separate institution, and it was found that 30% of them remained highly motivated while the rest just did what they were told. The probable explanation is that the best ones in a group feel encouraged by their own relative success and are the ones who out-perform, while the rest, discouraged by not being seen as outstanding (and therefore not seeing themselves as outstanding), lapse into mediocre work.

I doubt this story has any factual basis, but it provides a nice model. The same person can be a good performer or a mediocre one or a total slob, it doesn't depend just on what material you are made of, but in what environment you find yourself and more crucially on how it makes you see yourself. Quite possibly, in Bombay University 10% of teachers are highly motivated, 20% do what they are told and 70% refuse to participate in evaluation work. The key reason has to be that poor management at the top, over a long time, has made the teachers see themselves this way. The poor management often comes from political interference, but there are cases all around me where instead it simply comes from - poor management!

So I believe that the problem is not as closely related to politics as it may seem. After all a national airline and a major city university are bound to be political institutions and in every country, politicians take major decisions about such entities. And things go wrong everywhere too because of political interference. Just a couple of months ago over a pint of ale at "The Mitre", an elegant Cambridge pub, I watched my British colleagues fulminate about idiotic politicians (and politicised faculty members) in their country coming up with stupid ideas that, in their view, were harming academia. (As an aside, during my time in the UK the most prominent theme of conversation by far consisted of academics bitching about other academics and politicians!) However a precipitous decline in standards is not a necessary consequence. There is some level of accountability in the UK and other countries, so even the "idiots" are aware that they have a job to do and they have to be seen to be doing it. Moreover the cadres largely have an independent standing based on their work and don't rely for their self-esteem on their bosses.

Our problem is that in India there is no accountability. In addition the standard survival tactic of a senior administrator is to humiliate and lower the self-esteem of everyone else around, and in India this technique works very well because, probably for historical reasons, we tend to have very fragile self-esteem. I've tried to distinguish lack of accountability from political interference because there is a solution to the former, which is the key problem, and I want to propose it here and maybe elaborate on it in the future. As for humiliation and self-esteem, that is also a root cause of the problem and its solution is a part of the big solution.

The solution for non-accountability is called evaluation and election. I would like to see a careful, proper, fair, just, objective (as much as possible) evaluation of people in authority everywhere, and I'd like to see leaders (such as heads of airlines and universities, and for example - at my Institute - Chairpersons, Deans and the Director) elected openly and professionally by a well-defined and sufficiently large category of voters who are an integral part of the system.

Could the Vice Chancellor of Bombay University be elected by the entire faculty? Oh this is absurd, people will say. This would lead to even more politicisation!  And if the entire staff of Air India voted for their CEO, wouldn't it just lead to free travel for every clerk and their auntie? In short, wouldn't the "well-known" problems of Indian democracy now be visited on airlines and universities?

Not so fast. As Mark Twain said, democracy is the worst form of government except for all the others. Note that the VC of Cambridge University was recently elected by the entire faculty and all past degree holders, if they bothered to show up (in an entertaining tale that I'll save for another time). The faculty and students thereby see themselves as stakeholders in a system and vote for the person who in their view will perform the best. They may make a wrong choice but they are empowered and their choices can slowly evolve for the better. Contrast this with any state-run Indian institution, and not just universities.The top jobs are rarely advertised, voted for or evaluated. Senior administrators are brought in secretly, they often humiliate people and screw up the system, and then disappear with scarcely a murmur. You can tell them they are screwing up, they can ignore you and continue to do so, the predicted horrors are visited on the system, but they are never held accountable. Compared to that, nothing like open advertisement, open discussion and a free and fair election. At least those who have failed in one place won't get indefinitely renewed or worse, shunted around from place to place - as happens today.

And finally to the humiliation problem. This is a deep psychological problem and has a psychological remedy. A top administrator needs to be a counsellor who can encourage and reassure, who can bring out the best in each person regardless of how that person starts out, and who is committed to influence the so-called 30-70 ratio described above by bringing as many people as possible into the first category. It is possible and it's been done. Some organisations are not 30-70 but 70-30, or even better, and these are the healthy ones. But sadly at least in India this only happens by pure accident. This ability is not considered a positive trait to look for when people are sought for top jobs. In fact a humiliator is somehow seen as a stronger (ergo better) leader, even though such a person is truly the scum of the earth - a perverted alchemist converting human gold into base metal.

A dystonic tonic

It's been almost three months since I last blogged. For once, there is a technical reason. After two very enjoyable months in Cambridge, about which I wrote occasionally on this blog, I woke up one morning in early March to find my tongue swollen, or so I thought. When I spoke, I had a lisp. Not the end of the world, of course, and I thought it would just go away.

To cut a long story short, I had acquired lingual or oromandibular dystonia - a neurological disorder in which the tongue keeps popping out of the mouth when one speaks, causing one to mumble and lisp. The tongue was not swollen at all and the GP in Cambridge (despite helping herself to 60 pounds for each of two 10-minute visits) could not figure it out. So I came back to Bombay and underwent the usual battery of tests. Thankfully these ruled out a number of delightful possibilities ranging across tumours, strokes, multiple sclerosis, motor neuron disease, muscular dystrophy, myasthenia gravis, Parkinson's etc. When it doesn't arise from these other sources, dystonia by itself is largely harmless - apart from the inconvenience. So here I am, alive and well but mumbling.

Three neurologists and two months later, there's no improvement. The diagnosis can be summarised by saying that either (i) it came on due to stress, physical or mental or both, including viral infections, in which case it should go away on its own on a timescale of months, or (ii) it is a genetic disorder which was expressed late in life, in which case it can be managed by medications that have a 50% success rate (these have been tried and I seem to fall in the wrong 50%) or botox injections, which I haven't yet tried.

The point of this blog is not to whine about my problem but to try and highlight a few things I've learned in the process (other than that a GP in the UK costs 60 pounds for 10 minutes!!). Just about everyone I know - friends, relatives, colleagues - have been extremely supportive. But in the course of accepting their kind words, I've often out of habit asked them back "and how are you"? And in the process, learned that I'd been ignoring, or was merely unaware of, multiple tragedies that were generally much worse than my own. In the aforementioned circle of friends, relatives and colleagues and their own dear ones, I've discovered a rich variety of neurological, cardiac, psychiatric, physiological, you-name-it, disorders. Some I knew about, but perhaps didn't heed carefully enough. Others came as news to me. Many of these problems are crushing, virtually incurable, sometimes they've led to bereavement, and often they have wrecked peoples' family lives and professional activities. People bear them with fortitude and even find the time to phone me and ask how my mumbling is doing.

The above is meant to indicate that I realise how lucky I am, but it also appears to paint an excessively tragic picture of the world. In reality, the same people who are facing all these problems have, in the past, had wonderful times, relationships, experiences, all that. And so indeed have I. So it comes down to the trite observation that we all experience good times and bad times.

A story from the annals of Buddhist philosophy recounts that a young woman goes to a priest, distraught at the loss of her child. He refers her to the Buddha, who asks her to drop in on her various neighbours and find one household that has not been visited by death. On doing this, she is enlightened. Of course she could have insisted that her tragedy was upsetting no matter what was happening to others. But we all know that, as a protagonist in a Buddhist tale, this option was not open to her! These tales always, and quite rightly, have to end with enlightenment.

I haven't managed to be thus enlightened yet, and am handling my problem with my own personal combination of acceptance, gloom, practicality and disappointment. It's nice not to be stuck inside a Buddhist tale with the obligation to achieve instant illumination! And yet... when I get solicitous mails from people I don't know, or get told that my blog is sorely missed, or get a call from someone whose own problems are far worse, I feel I'm being offered a golden opportunity for enlightenment. Sooner or later I intend to take it.