What you see is not the whole story

For a few years after the stroke people used to suggest that I be taken to some hospital where some doctor will cure me in a few months. When asked whether there was a bed with railings and adjustable upper half (which is required for giving feeding), we will be told not to worry about such small things. When asked if there are facilities for attenders to stay, we will be told that it can be arranged. When Jaya will wonder about where to leave Sujit, the refrain will be that it should not be a problem. For everything there will be some such vague answer. But as usual, the devil lies in the details and it will be for Jaya to worry about them.

I think watching me sitting relaxed in the front hall for an hour or two, they perhaps did not realise that Jaya and the nurse had to put in some hours of hard work to make me presentable. If I have to travel at 10 a.m., they will probably have to get up around 5 a.m. in order to get me ready. I myself will not have to do anything more taxing than lying quietly watching TV while I am being pulled this way and that (and getting worried about what all could go wrong).

Once Jaya had to attend her cousin's wedding. The nurse was on leave at the time and was to return on the morning of the wedding. Jaya decided that she will go for the wedding if the nurse returned otherwise she will skip it. One person said that she should not skip the wedding and that if the nurse doesn't return he will stay back. After all, he reasoned, it should not be too difficult to take care of me - I will just be lying on the bed watching TV and giving feeds is easy. Jaya asked him what he will do if I wanted to pass urine or motion. He uttered an 'Oh!' It was the first time it had occurred to him that such unpleasant things were involved. I could see his hitherto 'can do' expression becoming sicklied o'er with the pale cast of thought.

Probably, after interacting with me for a brief while, it does not occur to some that looking after me may be a bit like what is often said about legislation and sausages- the outcome is more pleasant to contemplate than the process that went into making it .

My homebody disposition

Any suggestion that would require me to travel gives me a daymare. Occasionally, family members will ask me to accompany them to somebody's house. I will balk at all such suggestions but very occasionally I will succumb to the entreaties and agree to travel. Such instances would have caused Jeeves to observe, 'A somewhat sharp crisis in your affairs would appear to have been precipitated, sir.' I would be beset by all sorts of anxieties - Would my gastrostomy leak and cause pain (as it sometimes does) making me want to lie down? Would I suddenly want to pass motion? would Jaya have to attend to some phone call leaving me with no means of communication?

People around me are always willing to help but it is not much use if they cannot understand what I am telling. Some famous neurologist whose name I forget said,'When I point look at where I point not at my finger'. Many people have the habit of looking at my face instead of looking at where I am looking with the result that they remain baffled about what I am indicating.

I think the biggest reason for my reluctance to travel is the perception of loss of control, however illusory, of my surroundings. In my room I know what is kept where, where the switches for the fan and lights are, etc. Folks at home can easily make out what I want . If I want to suddenly pass motion or urine, the appropriate steps can be taken immediately. This is not easy when I am out of my home. In Why Zebras Don't Get Ulcers, Robert M. Sapolsky says:

Place two people in adjoining rooms, and expose both to intermittent noxious, loud noises; the person who has a button and believes that pressing it decreases the likelihood of more noise is less hypertensive. In one variant on this experiment, subjects with the button who did not bother to press it did just as well as those who actually pressed the button. Thus, the exercise of control is not critical; rather, it is the belief that you have it. An everyday example: airplanes are safer than cars, yet more of us are phobic about flying. Why? Because your average driver believes that he is a better-than-average driver, thus more in control. In an airplane, we have no control at all.

Another reason for my reluctance to roam the countryside is that I may not find the conversations gripping. I was not a social butterfly before my stroke so I am not likely to be a party animal now. An inability to speak is not the best aid for charming conviviality. I will keep thinking wistfully about how I could have spent the time reading something interesting. I will be relieved when I finally return home. By that time I will have a backache and a headache after inhaling all that smoke at traffic jams. (I am getting a bit long in the tooth, you know!) I am happiest when comfortably ensconced in my wheelchair in my cozy little room quietly poring over a book or perusing an interesting blog post.

The perils of binary communication

'There are two kinds of people in this world - those who divide everything into two and those who don't', said Robert Benchley. The latter category of people will have a tough time getting some information out of me.

There are two broad strategies to get an answer from me:

1. Divide the universe of possible answers into two groups and ask me to choose one. Divide the chosen group into two and ask me to choose one and so on till you reach the correct answer.
2. For all the possible alternatives, ask me a question with a yes/no answer and I will blink yes for the correct alternative.

But what happens if I am not given all the alternatives? For instance, someone once asked me how many wickets India had lost that day. He then gave me the choices: 1,2,3....10. I did not blink for anything so he became confused. The problem was that India had not lost wickets that day. How was I to indicate it if I was not given the alternative 'zero'? Hamstrung by Jaya's absence, I had no option but to wait patiently and hope that the person realised that he had missed something.

There may be some occasions when somebody will be adventurous enough to try to find out my answer by dictating the letters. But most probably, he will be unaware of all the intricacies involved in communicating with me and will soon encounter some roadblock. He will be successful only 'so far as his labors extended' as Dupin said in The Purloined Letter.

For want of quotation marks the meaning was lost

In The Game of Words, Willard R. Espy writes :

Misplaced commas have resulted in curious misunderstandings. It is said that an ancient Greek, consulting the oracle at Delphi as to whether he should go a-warring, was told:

Thou shalt go thou shalt return

never by war shalt thou perish.

Optimistically adding commas after 'go' and 'return', the Greek took up arms, and was promptly slain. He should have put that second comma after 'never'.

Punctuation errors have not caused me such an existential crisis but there have been occasions when my dictation has caused raised eyebrows. For instance, Jaya wrote the title for my first post and looked at me with the quizzical expression that I had when I first saw a report from a management consultancy firm having the legend 'This page is intentionally left blank'. I looked at what she had written - 'Why I do?' I told her that 'I do' is within quotation marks. Now I didn't look so illiterate.

More communication snafus

At first I used to dictate long sentences which used to lead to some problems. There will be some interruptions and by the time we resumed Jaya would have forgotten what I had dictated earlier and I would have to start again. Sometimes just as I had finished a sentence and was telling myself 'mission accomplished', I will realise like George Bush that I had counted my chickens too early. A misplaced comma or a word with multiple meanings would have caused Jaya to misinterpret the sentence.

Nowadays before starting the dictation I try to think if I can break the sentence into smaller bits. I also try to iron out any thinkos which might mislead Jaya. It is different for this blog because Jaya writes what I dictate so even if there is some interruption, I can continue later from where we had stopped.

Some people are confident of interpreting my blinks correctly so they will recite the letters of the alphabet in order to find out something from me. But the problem will be that they will not know the division of the alphabet into four rows. This meant that each time they started from 'a' which meant that I had to stare unblinkingly till they reached the correct letter. This was often difficult for letters towards the end of the alphabet and the problem was exacerbated by the fact that many people said the letters slowly. For example, if I wanted to dictate 'w' and the person starts from 'a', I might be forced to blink by the time he reaches 's' which will create a lot of confusion.

'Fone'

Dictating alphanumeric characters was a problem. For instance, I will dictate 'fone' and Jaya will look at me in bewilderment. After we developed the convention for spacebar, I started saying

'f one' which was easy to interpret as F1. In most cases Jaya will guess from the context that I mean the car race and not the key on the keyboard.

It is now easy to dictate something like H5N1. Of course, this is only when dictating to Jaya. People less schooled in the subtleties of communicating with me will write 'hfivenone' (assuming they get this far), which will lead to a lot of hair tugging in vain attempts to solve the conundrum before they throw in the towel with a 'let Jaya come'.

Enhancing the communication process

The serendipitous discovery of the method of communication was the key event that prevented my relegation to the realm of the undead. (I must qualify it by saying that the discovery was 'almost serendipitous' because talk of some means of communicating with me was 'in the air'. Jaya and the doctors were discussing various methods of eliciting my thoughts.) Although the basic structure has remained the same over the years, there were some roadblocks which necessitated a few additions.

Initially, I used to be stymied by the problem of how to indicate to Jaya that I wanted to dictate something. I would stare at a table nearby on which a book was kept and eventually Jaya guessed that I wanted to say something. But that was in the hospital. When I was discharged and came back home, I did not know where to look in order to give Jaya the same indication. I stared in the same direction in which I remembered the table position in the hospital room. After some trials and errors Jaya finally managed to guess what I meant. When this happened a few times, we developed a convention - if I opened and closed my mouth like a fish, it meant I wanted to convey something.

In order to avoid 'on epi' type errors (of course that was a different type of error- a space was inserted where there was none) we had to develop something for spacebar.I took to shaking my head from side to side to indicate a space. By this Jaya understood that the next letter was the beginning of the next word. I did not have to do this everytime because in many instances the word will be apparent after I dictate a few letters.

Another problem was that of punctuations. There were a few instances when the meaning of the sentence was changed because of the lack of punctuation. I started nodding up and down after dictating a letter. Jaya will guess that there is some punctuation mark there and will start guessing - full stop, comma, brackets, single quotes, double quotes, semicolon etc and I will blink for the correct alternative. This was much better than dictating 'sonapostrophes' for "son's" which would have been a mess.

For pronunciations I relied on rhyming words. For instances, if Sujit, wanted to know the pronunciation of 'coelom' I will say that the first half is pronounced as 'see' and the second half rhymes with 'come'. Of course, if I was sitting I will take the easy option of checking the audio link of an online dictionary.

For diagrams I will give a verbal description and hope that Jaya will understand how to draw it. As Sujit goes to higher classes and the drawings become more complicated, I don't know how successful I will be.

With experience, we are much quicker than suggested by the description. Still it is tedious and I am always glad when Jaya or someone else guesses a word after I have dictated a few letters.