The plight of Tony Nicholson gave me some serious food for thought. It re-awakened some uncomfortable feelings, brought back some uncomfortable memories, and made me face some uncomfortable truths.
Perhaps the most fundamental loss, when one is 'Locked-In' is that of autonomy. However 'intellectually intact' you are - you remain at the mercy of others! You can make decisions, but are completely powerless to carry them out. Even making your wishes known is a Herculean task - and there is no guarantee whatsoever that they will be carried out. You are completely dependent on others (in the worst case, even needing a ventilator to help you breathe), and there are no bounds to the frustration of waiting for and watching some-one else doing something you would prefer to do yourself.
Another great loss is that of effective communication. How I longed (& still do) for a good natter, to shout or sing; even to call the cat! Although 'talking' via eye-blinks is better than nothing (and in many respects is indeed progress), it is slow and exhausting. And once again, you are at the mercy of others - to 'listen'.
I was 'lucky'. I was Locked-in for a few months. After that, I regained enough movement in my right thumb to operate a switch, and to drive an electric wheelchair. I regained enough movement in my head to operate a headswitch, and nod or shake my head, which injected some 'normality' into my communication. Even these miniscule 'improvements' opened up my life considerably; I shudder to think of what life could have been like, without them. Over the years, I have acquired some 'speech' (I'm very dysarthric), and have learned to write a bit (the first time I signed a cheque, was indeed a red-letter day!) But even so, I remain at the mercy of others. My whole life is totally built upon trust - and if that trust is betrayed, my whole world falls apart. I have to trust people - in so many ways too diverse to mention - and I have to trust 'things' (electronic, mechanical, and otherwise) to work properly! It is these 'things' that allow me to be 'independent'. But they all have to be set-up and maintained by other people - so I am not truly independent at all!
How much more dependent to be Locked-in! Dependent for staying alive and dependent (as was the issue here) on the manner of dying. There was a lot of discussion of the rights and wrongs of this man's case. And as I listened to the various pontifications I could not help thinking '...but you have no idea of how it feels!) Whatever one feels about the ethics of this, it is surely the loss of control over one's choices that is so cruel. I don't want to die. But I was Locked-in for a matter of months. How I would have felt had it been a matter of years, I don't know.
But one thing I do know is that being Locked-in is being in a Living Hell!
