What is it like to be 'locked-in'?

There is a well known philosophical paper called What is it like to be a bat? It is not so much about bats as about the impossibility of knowing fully some state unless you are yourself in that state. You may know all about echolocation but you will not be able to experience the world like a bat unless you are yourself a bat. I won't be able to understand exactly the thought processes of writers who are slowly losing their mind. And I won't be able to understand the experience of someone who has had a stroke in a different part of the brain. (For example, see this TED talk.) The same goes for being 'locked-in'. There is something ineffable that you will never be able to get.

Take for instance the first time I sat upright after my stroke. I felt as if all my internal organs were hanging down limply as if they were attached to the body wall by sheets of muscles that were limp like the membrane of a pricked balloon. I don't know how else to explain it. The feeling lasted only for a few seconds and has never happened again. You will not be able to simulate the feeling because I suppose the relevant muscles are involuntary.

In The Language Instinct, Steven Pinker writes:

The main lesson of thirty-five years of AI research is that the hard problems are easy and the easy problems are hard. The mental abilities of a four year-old that we take for granted - recognizing a face, lifting a pencil, walking across a room, answering a question - in fact solve some of the hardest engineering problems ever conceived ... As the new generation of intelligent devices appears, it will be the stock analysts and petrochemical engineers and parole board members who are in danger of being replaced by machines. The gardeners, receptionists, and cooks are secure in their jobs for decades to come.

The same is the case with being 'locked-in'. Reading or blogging don't drive me up the wall. That is reserved for the ant in the pant or the mosquito in the middle of the night. You will not be able to understand why time appears to pass slowly when someone removes the railings from my bed and no one stands nearby. (It does not happen every time.) You will have only a vague understanding of my reluctance to travel.

Whenever someone tells me that I should do this instead of that, I am reminded of an incident that I had once heard. The wife was sound asleep when her one year old son gave her a good bite. The wife awoke in a daze and in pain and gave the child a whack. Hearing the commotion, the husband came into the room, heard the whole story and admonished the wife - 'You should know some child psychology. How will a small child know that its actions are causing pain? He was only being playful.' The wife listened quietly. A few days later the boot was on the other foot.The husband was sound asleep when the child gave him a good bite. He awoke in a daze and in pain and gave the child a whack. Hearing the commotion, the wife came into the room, heard the whole story and asked him,'What happened to your child psychology stuff?'