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My mind is blown by this: Locked In Syndrome

November 24, 2009

This morning, I listened to a story on the news about a man in Belgium, who had been in a motor vehicle accident 23 years ago.

He was diagnosed as being in a coma, and was thought to have been in a vegetative state, with no awareness of his surroundings.

A recent scan of his brain showed this to not be the case.  The man’s brain activity showed him to be conscious – and after establishing communication with him through now available communication technology, he reports being aware for the whole time.

For 23 years, he was screaming inside, and because of near full paralysis, was unable to communicate.

I can’t even imagine that nightmare. In my mind, it’s only a 1/2 step better than being buried alive – at least in that instance you’d eventually die, and be put out of your misery.

But to be sentient, and unable to communicate – I can’t even fathom it.

I used to work at nursing home that had a coma unit.  When most people think of coma, they think of a person lying motionless and looking lifeless in a bed.

But that isn’t so.  There are different levels of coma – different degrees of unconsciousness.  The coma unit wasn’t a quiet place.  There were many people who were agitated, frightened and moaning.  I was never sure which was more disturbing – the complete silence or the sounds of living in a coma.

The coma unit is one that normally contains a lot of tragedy.  Babies who have drowned and lived, only to be vegetables, people who have gotten drunk and fallen out of trees onto their heads, and I recall one particularly sad story about a young woman who had been at a shoppping mall with her grandmother.  As she walked around the back of her car, her purse got caught on the back bumper, causing her to fall and strike her head, and landing her in a coma.  She was in her 20’s when the accident occurred, and her family spent a lifetime watching her live in a twilight – trapped between life and death.  Alive, but not living.  Alive, but not quite dying either – at least not nearly soon enough to suit anyone’s comfort.

To think of any of those folks living in those conditions, surrounded by medical equipment, and sometimes less than caring aids and nurses, with no one treating them as if they know what is happening, seeing how rarely their family members visit or how sad they are when they do, trapped inside their minds just hits me in a really deep place.  I can barely imagine the living hell that must be.

I used to feel that in so many of these cases, medicine had gone too far and simultaneously not far enough.  Their bodies were alive, but they would never have a life.  Their families struggled between praying for a miraculous recovery and praying for the death that would free them from the twilight.

And yet, medcial technology has freed at least one person from that awful existence.  Given them some chance to live – to make those necessary human connections through communication.

Working there definitely impacted my own definition of life – what it means to be alive.  And for me, breathing does not a life make.  I have told my family that in the event of this kind of brain injury I want to be let go.  I would not want to live in the twilight.

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6 Comments leave one →
  1. November 24, 2009 12:13 pm

    What a nightmare! I’m TOTALLY with you on that one, Eileen.

    Dear Friend and I talk about this issue frequently, and we both have explicit legal directives that specify what is to be done (or not done, as the case may be) if we are incapacitated. Each of us also has power of attorney for the other.

    It is crucial to have these conversations with your family and complete the legalities–but people seem to avoid it like the plague. No one wants to think they are going to die, I guess. But. I have seen too many family members pursue treatment the patient would not have wanted because their own guilt drove them to do so—and there was no legal document to keep them focused on what their family member wanted.

  2. November 24, 2009 7:07 pm

    I took care of a person years ago with locked in syndrome. There are some things worse than death. That is one. Let me go be with Jesus if that ever happens to me.

    And I want to add onto what Doxy said. A lot of what happened to my mom–er, treatment–during her last month was guilt driven, in clear violation of her legally stated wishes. It just takes one guilt ridden child to overcome a document. I’ve seen it many other times, especially in the ICU setting.

  3. Lapinbizarre permalink
    November 24, 2009 10:34 pm

    I read an account of this a couple of days back and have been avoiding even starting to contemplate what the man must have gone through in the 23 years until his condition was correctly diagnosed. Or, for that matter, to contemplate what he is still going through. Completely with you in that I would want to be allowed to die in the same circumstance. have you ever seen Dalton Trumbo’s 1971 movie “Johnny Got His gun”?

  4. trooper permalink
    November 25, 2009 2:19 am

    Have you seen the “Butterfly and the Diving Bell” about this subject? Who are we to say that this life isn’t worth living? I get that you should state your intentions before this happened, but life is life, yes? The guy in that movie was both “locked in” and found his life to be worth living. Is there someone out there that can define who’s “functional” enough to count?

  5. Lapinbizarre permalink
    November 25, 2009 8:57 am

    Don’t see that anyone has judged the man’s life not worth living, Trooper – just a consensus that those posting before you might sooner not have to live it themselves.

  6. episcopalifem permalink*
    November 25, 2009 10:15 am

    Listen, as I said in a post below, I had a very difficult time putting my cat to sleep – the enormity of that decision continues to weigh upon me, even years later.

    To make that decision for another human being blows me away. It’s not the kind of decision that should be placed upon any of us. That’s why it’s so important to have those discussions up front, and to let your loved ones know what it is you wish – it takes the burden of that decision off of your loved ones, and makes it your own decision.

    I got more than an eyeful of people and families living with coma during the 3 years or so that I worked at that nursing facility. That has informed my own personal definition of what I’d consider “life” for my part, and I have communicated that.

    My comment here, as Lapin says, is more on the living hell it must have been to endure being sentient, but having no way to let anyone around you know that. Watching your loved ones suffer, being unable to communicate pain or anger or your general wishes is for me, an unimaginable hell.

    I’m grateful that there is technology available in this day and age to help release those who are locked in from their living prisons, but I still feel uneasy in my gut about the medicine that puts them there. That doesn’t put a value on their life, and just makes me wonder what “life” is. Is living in a comatose state living? I’m not sure, and from what I’ve seen first hand, it appears to just be existing – especially for those who really ARE in a non-sentient state.

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