LOCKED IN

We talk about being locked-in but are you aware there is a medical condition of being locked in?

Medically known as Pseudocoma, “it is a rare neurological disorder in which there is complete paralysis of all voluntary muscles except for the ones that control the movements of the eyes. Individuals with locked-in syndrome are conscious and awake but have no ability to produce movements (outside of eye movement) or to speak (aphonia). Cognitive function is usually unaffected.” NORD (National Organisation for Rare Disorders

I first came across this disorder while reading The Diving Bell and the Butterfly the story of Jean-Dominique Bauby the editor-in-chief of French Elle and the father of two young children, At the end of 1995, he was the victim of a rare kind of stroke to the brainstem and after 20 days in a coma, he awoke and found his body had almost stopped working. One eye only was still functioning.

This is a book showing man’s desire and ability to overcome almost anything. It’s well worth a read. I am going to reread it while sitting in so-called locked-in.

Interestingly, again according to NORD

“The first description of the locked-in syndrome can be found in The Count of Monte Cristo authored by Alexandre Dumas. To describe a patient with a locked-in syndrome, the author used the following words:

‘Sight and hearing were the only senses remaining…. It was only, however, by means of one of these senses that he could reveal the thoughts and feelings that still occupied his mind, and the look by which he gave expression to his inner life was like the distant gleam of a candle which a traveler sees by night across some desert place, and knows that a living being dwells beyond the silence and obscurity. In his eyes, shaded by thick black lashes, was concentrated, as it often happens with an organ which is used to the exclusion of the others, all the activity, address, force, and intelligence which were formerly diffused over his whole body; and so although the movement of the arm, the sound of the voice, and the agility of the body, were wanting, the speaking eye sufficed for all’.

In this way, he brilliantly highlighted the potential that these patients have to maintain a meaningful life despite their extreme disability.”

It is amazing where our mind goes when we are looking for things to occupy us.