untwisted

I was surprised, when opening the Mail & Guardian this weekend, to find a story titled “Locked in a coma for 23 years” (see online version here).  It speaks about a man, Rom Houben, who was apparently thought to have been in a coma for the last 23 years.  The headline for the story is a bit misleading as the most tragic part of this story is that Rom Houben has, in fact, not been in a coma.  It is tragic enough to suffer from “locked in syndrome”, for no matter how short a period.  For instance, many people who develop advanced Guillain Barre Syndrome get to, unfortunately, experience this for a relatively brief period of time.  But, Rom Houbon as been (at least from some point in the last 23 years) been conscious and yet mistaken for having been in a coma.  To suffer from “locked in syndrome” is tragic and frustrating enough.  To suffer from it and be treated as if you are in a coma – be treated as if you have no conscious awareness of yourself and the world around you – is devastating.  One would think that, these days, such a misdiagnosis would have been truly unlikely.  To add to the tragedy of this story, is the fact that over the past 23 years he has missed out on the various therapies that might have been able to somewhat improve his condition. Or, at the very least, help him communicate with the outside world.

Ultimately, Rom houbon’s story leaves me with a few thoughts:
1)    How remarkable is the human mind that, for all these years, he has survived by travelling “with my thoughts into the past, or into another existence altogether.”  Perhaps he had no choice?  Who knows, perhaps it is possible for one to ‘will’ oneself to death?  But, he managed to live with nothing but his own thoughts.
2)    How often does this happen to a greater or lesser extent?  How often, based on what little function we can see from a neurologically traumatised patient, do we take for granted that they don’t have certain thoughts or feelings of their own?  How often do we speak about patients, rather than to them – simply because they cannot respond or based on the assumption that do not understand?
3)    To what extent do we understand the experience of ‘coma’ and how do we reliably distinguish between coma and “locked in syndrome”?  Yes, there are measures like the Glasgow Coma Scale, but do they really suffice in allowing us to understand how consciousness functions within the confines of a coma?  In terms of this, there is some interesting work being done by Jan Webster on trying to better appreciate patient’s experience of coma.  Such work indicates that even within the confines of a coma there may be some semblance of consciousness.
4)    Lastly, to what extent is locked in syndrome an extreme form of what we all sometimes suffer from – feeling stuck within the confines of a situation and not being able to put our experience of it into words.  Whether this be being stuck within a mood, marriage or work environment.
Ultimately, the few privileged experiences I have had of working with someone suffering from ‘locked in syndrome’ have confirmed for me how important it is for us to be able to communicate our thoughts and feelings in some way or another.  As Ludwig Wittgenstein wrote, “Uttering a word is like striking a note on the keyboard of the imagination.”  How tragic is it, then, that Rom Houben has been denied a keyboard for so long?