Comatose man was actually aware for 23 years

Source: MSNBC.com

Man in ‘coma’ heard everything for 23 years

BRUSSELS - For 23 torturous years, Rom Houben says he lay trapped in his paralyzed body, aware of what was going on around him but unable to tell anyone or even cry out.

The car-crash victim had been diagnosed as being in a vegetative state but appears to have been conscious the whole time. An expert using a specialized type of brain scan that was not available in the 1980s finally realized it, and unlocked Houben’s mind again.

The 46-year-old Houben is now communicating with one finger and a special touchscreen on his wheelchair.

“Powerlessness. Utter powerlessness. At first I was angry, then I learned to live with it,” he said, punching the message into the screen during an interview with the Belgian RTBF network, aired Monday. He has called his rescue his “renaissance.”

Over the years, Houben’s family refused to accept the word of his doctors, firmly believing their son knew what was happening around him, and gave no thought to letting him die, said his mother, Fina. She was vindicated when the breakthrough came.

“At that moment, you think, ‘Oh, my God. See, now you know.’ I was always convinced,” she said in a telephone interview with The Associated Press.

The discovery took place three years ago but only recently came to light, after publication of a study on the misdiagnosis of people with consciousness disorders.

While a 23-year error is highly unusual, the wrong diagnosis of patients with consciousness disorders is far too common, according to the study, led by Steven Laureys of Belgium’s Coma Science Group.

“Despite the importance of diagnostic accuracy, the rate of misdiagnosis of vegetative state has not substantially changed in the past 15 years,” the study said. Back then, studies found that “up to 43 percent of patients with disorders of consciousness are erroneously assigned a diagnosis of vegetative state.”

The issue is fraught with difficult medical and ethical questions. Patients diagnosed as being in a vegetative state with no hope of recovery are sometimes allowed to die, as was done in 2005 with Terri Schiavo, the severely brain-damaged Florida woman at the center of the biggest right-to-die case in U.S. history. Her feeding tube was removed.

“It makes you think. There is still a lot of work to be done” to better diagnose such disorders, said Caroline Schnakers of the Coma Science Group.

Houben was injured in an auto accident in 1983 when he was 20. Doctors said he fell into a coma at first, then went into a vegetative state.

A coma is a state of unconsciousness in which the eyes are closed and the patient cannot be roused. A vegetative state is a condition in which the eyes are open and can move, and the patient has periods of sleep and periods of wakefulness, but remains unconscious and cannot reason or respond.

During Houben’s two lost decades, his eyesight was poor, but the experts say he could hear doctors, nurses and visitors to his bedside, and feel the touch of a relative. He says that during that time, he heard his father had died, but he was unable to show any emotion.

Over the years, Houben’s skeptical mother took him to the United States five times for tests. More searching got her in touch with Laureys, who put Houben through a PET scan.

“We saw his brain was almost normal,” said neuropsychologist Audrey Vanhaudenhuyse, who has worked with Houben for three years.

The family and doctors then began trying to establish communication. A breakthrough came when he was able to indicate yes or no by slightly moving his foot to push a computer device placed there by Laureys’ team. Then came the spelling of words using the touchscreen.

Houben’s condition has since been diagnosed as a form of “locked-in syndrome,” in which people are unable to speak or move but can think and reason.

“You have to imagine yourself lying in bed wanting to speak and move but unable to do so — while in your head you are OK,” Vanhaudenhuyse said. “It was extremely difficult for him and he showed a lot of anger, which is normal since he was very frustrated.”

With so much to say after suffering for so long in silence, Houben has started writing a book.

“He lives from day to day,” his 73-year-old mother said. “He can be funny and happy,” but is also given to black humor.

Recently he went to his father’s grave for the planting of a tree.

“A letter he wrote was lowered into the grave through a tube,” his mother said. “He closed his eyes for half an hour, because he cannot cry.”

There is little hope that Houben’s physical condition will get better, but his mother said she refuses to give up: “We continue to search and search. For 26 years already.”

After tapping out a long message to everyone, thanking those that believed in me and cursing those that thought I was “brain dead”, I would beg them to give me a nice long drip of morphine so I could die peacefully. What a horrible existence. But that’s just me.

Seems like a pretty clear argument for euthanizing people diagnosed veggie to me. Whether the diagnosis is true or false is simply immaterial. I would rather die than be completely paralyzed and unable to communicate for twenty three years.

So this guys is like the exact opposite of George W. Bush .

“He lives from day to day,” his 73-year-old mother said. “He can be funny and happy,” but is also given to black humor.

The article fails at this point. We need examples damn it!

That is some messed up shit.

I don’t understand how anyone remains sane in these circumstances.

Stay classy, kerzain.

Whaaaa??? Kerzain’s post was a clever joke. One might even call it dark humour. I think the comatose/paralyzed guy would appreciate it.

What’s not classy about it?

On the other hand, if people were talking to him about politics such that he knew who George W. Bush is, he has probably died a thousand deaths already in his personal hell.

“Hey, I love you guys, it would be really great if one of you killed me now so I don’t have to live like this any more. Really, fuck you guys, kill me now, this is not a joke! I can HEAR YOU, this is not “dark humor”, fucking let me die! GOD DAMN YOU!!!”

Reminds me of an episode of E.R. or some such where a guy had been in a coma for a long time. They finally hook him up with some computer interface or something and the first words to come up on the screen are “kill me”.

Damn, can a person’s psyche actually handle being trapped in a paralyzed body for 23 years?

Consider the potential for almighty vengeance when those 23 years of pent up brain-fury are hooked up, via a clerical error, to a massive cybernetic killing machine.

I’d stay alive just for the chance to wage my terrible blood war upon humanity.

I’m a pretty patient son of a bitch. I have no doubt that I could get through something like Solitary on FOX (barring some of the more physical-based challenges, even though my pain tolerance is also really high). I could be thrown in a hole for a month and come out alright as I would just shut my brain down and wait patiently.

But at least those things let you move our body. Without the ability to move or speak once in a while, I don’t think I could even last a year. A couple more years would be spent continuing to be insane and hearing voices and machines and thinking I were in The Matrix or something. Perhaps at some point that happened to him, and then his brain’s synapses started firing correctly again and he ‘woke up’ with a sense of clarity and patience.

Assuming his loved ones actually were there, convinced that he was still alive and that they wouldn’t give up on him, he surely must have been comforted enough knowing that things were being done and that people still loved him and were working for him, and he definitely would have cheered them on.

The guy needs to write a book as soon as possible, or give us all some details!

If you haven’t read it already, you might be interested in The Diving Bell and The Butterfly, by JD Bauby. He had a stroke at age 43, had only the use of his left eye, and wrote the book essentially an eyeblink at a time.

For the lazy, there’s also a movie.

The movie is as boring as it sounds. Also, what happened to that guy is interesting, but it doesn’t really give the same perspective as the story of a guy who is basically just a consciousness without a physical form so much as a container, and without any way of interacting or communicating with the world.

That reminds me of that short story by Stephen King, “The Jaunt”. The guy spent an eternity with nothing but his own thoughts.

I can’t remember anything
can’t tell if this is true or dream
deep down inside I feel to scream
this terrible silence stops me

now that the war is through with me
I’m waking up, I cannot see
that there’s not much left of me
nothing is real but pain now

hold my breath as I wish for death
oh please God, wake me

back in the womb it’s much too real
in pumps life that I must feel
but can’t look forward to reveal
look to the time when I’ll live

fed through the tube that sticks in me
just like a wartime novelty
tied to machines that make me be
cut this life off from me

hold my breath as I wish for death
oh please God, wake me

now the world is gone I’m just one
oh God, help me hold my breath as I wish for death

darkness imprisoning me
all that I see
absolute horror
I cannot live
I cannot die
trapped in myself
body my holding cell

landmine has taken my sight
taken my speech
taken my hearing
taken my arms
taken my legs
taken my soul
left me with life in hell

The truly sad part is that they brought in his favorite movie (the wizard of oz) to play on a loop on the tv in his room. It played for 11 years straight, before they turned it off for a while. To this day the characters form the movie haunt his dreams and hearing any of the songs sends him into a nearly catatonic depression.

ps. All true, except for the parts I made up.

What the hell?

http://www.randi.org/site/index.php/swift-blog/783-this-cruel-farce-has-to-stop.html

I’m enraged. Several perceptive persons have sent me to msnbc.com - where we can see Dr. Nancy Snyderman relating a story. It’s a heartrender, described thus by Dr. Snyderman:

[QUOTE]A mother [in Belgium] says her son has emerged from what doctors thought was a vegetative state to say he was fully conscious for 23 years but could not respond because he was paralyzed.

No, that is not what the man said, Dr. Snyderman. That’s what an incompetent layperson typed for him! I ask you to first go to http://tinyurl.com/y8lku48, and note the section of the video from 12 to 35 seconds, then come back here.

This is yet another obvious example of abysmal, practiced, purposeful ignorance by medical personnel - including Dr. Snyderman and her staff who prepared this piece. I cannot understand how anyone, professional medical person or layman, can continue to believe that the farce known as “Facilitated Communication” [FC] represents anything other than a fantasy that was begun back in 1977, when an Australian woman named Rosemary Crossley came up with the idea that autistic persons could express their thoughts via a keyboard when their hand was “supported” by what she called a “facilitator.”[/QUOTE]