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Ear to the Ground

For 23 Years, Fully Aware but Mute and Paralyzed

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Posted on Nov 23, 2009
Flickr / SuperFantastic

After surviving a car wreck in 1983 at the age of 20, Rom Houben was written off as a vegetable. He was actually perfectly alert. The Belgian would spend the next 23 years in a private hell until doctors finally discovered his consciousness and found a way to communicate with him.

The story has revived the fiasco that surrounded Terri Schiavo, the vegetative Florida woman whose case was distastefully taken up by Congress.

Whatever the parallels, the Houben case seems the worst kind of nightmare. For more than two decades, he was treated as a piece of furniture. He was unable to speak or cry even when he overheard that his father had died.

His was not a unique experience. It’s called locked-in syndrome, the most famous patient being Jean-Dominique Bauby, the French journalist who blinked out his memoir using only his left eyelid.  —PZS

AP via Yahoo:

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.

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By KDelphi, December 1, 2009 at 8:13 pm Link to this comment

Blackspeare—I agree, they would. They used Terri Schiavo and one GOP (cant remember his name—from Texas?) held up that baby on c-span, acting like it was saying. “I dont want govt health care..I want freedom…”

Did you see that shit?! that was ONE of the sickest things Ive seem these guys do..the speaker asked them to stop using guests as props…and remember they used that lady from canada with a brain tumor..shameshameshameshame..just baffling and psychopathic

NYCArtist—I do see two different sites. But, the quote is from one of them.

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By Blackspeare, November 24, 2009 at 11:14 pm Link to this comment

Kdelphi…

Yes, they would.  What the woman is doing is called “facilitated communication” and it’s an old, well-known hoax.  Why the media is taken in is beyond me——-maybe they needed a human interest story with pathos!

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By KDelphi, November 24, 2009 at 10:05 pm Link to this comment

NYCArtist—I look back at that, and I am sorry that was so long…

there might be two groups, but the one I worked with didnt believe in assisted suicide, and I do, completely voluntary, but I admit it would be hard to enforce for severely disabled.

When I worked with severly mentally disabled, and we had to make decisions about care , it was very hard to know what their decison wouldve been (most did not have family members that you could even call)..but it enraged me when Medicaid would make it for them…I nevr thought that their lives should be a matter of dollars and cents, but exactly what to base it on, when the severly disabillity is mentally organic, still makes me feel conflicted..no one’s life should be a matter of money in a so-called civilized country…but, if they can make it (or have previously made it) the decision should be theirs, I think.

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By KDelphi, November 24, 2009 at 4:44 pm Link to this comment

Blackspeare—would people stoop so low as to try to use it to influences the dumb “health care reform” debate?

NYCArtist—when I cut and paste your first link I got a different site than I did with you second one—I am trying to look for differences and dont see them…?? my browser?? I dont know! just the http://???  I’ll go with the first went to, to see if we were talking about the same group…I do know them and did go to the site…I dont take stuff like that lightly.

I am sure I saw (some of them) holding signs at the Schiavo case..they may has been misrepresenting the organization…I have worked with them before. I consider myself disabled and was once more disabled than I am now (most didnt really think I would get better) I was not close to death, once I was conscious and it was many years ago..but I started working with some
disability rights groups (I had worked with them for clients when I was a social worker for many years)and the problem I have with some of them is stuff like this:

“Since 1983, many people with disabilities have opposed the assisted suicide and euthanasia movement. Though often described as compassionate, legalized medical killing is really about a deadly double standard for people with severe disabilities, including both conditions that are labeled terminal and those that are not.”

(note, please:I am certainly against a double standard for people that are disabled, but, I strongly support the right to suicide, too)

Not Dead Yet was founded on April 27,1996, shortly after Jack Kevorkian was acquitted in the assisted suicides of two women with non-terminal disabilities. In a 1997 Supreme Court rally, the outcry of 500 people with disabilities chanting “Not Dead Yet” was heard around the world. Since then, eleven other national disability rights groups have joined NDY in opposing legalized assisted suicide, chapters have taken action in over 30 states, and we helped put Jack Kevorkian behind bars in 1999. In the 2003-2005 fight to save Terri Schiavo, twenty-five national disability groups joined Not Dead Yet in opposing her guardian’s right to starve and dehydrate her to death.”

Kavorkian was a little nutso, but, it sounds like supporting Schiavoo’s parents over herself to me…dont you agree?


I do support the right to suicide, (probably best decided ahead of time) and do not think Schiavvo was “disabled”—she was brain dead. When they did a autopsy, her brain was 85% water, I read. Drs like Frist were diagnosing her by video and it became a huge “right to life” mess..and I didnt feel that NDY was one my side, her side or , in any way helpful…Her husband (she wasnt a child) had made a decision for her after, what 8 yrs?? and her parents wanted to keep her breathing to make themselves feel better, in my opinion. I just dont want some person who thinks they are doing me a favor to override my living will and make my heart keep beating, or make me live when I am in intolerable pain..being on Medicaid, i probably dont have to worry about that.

My sisters kept my father alive long after he could have been conscious again (brain cancer) (he didnt have a living will), so I got my doctors and a lawyer to sign mine…I dont want to spend 6 wks in Hospice , pumped full of steroids, being fed electrolytes and being brain dead…I am NOT talking about people who have disabilities or non-terminal illness that want to try to treat them or work with them.

I just dont know enough about this guy to really say about him…I saw “The Diving Bell and the Butterfly”, but, I am not certain that the man in the article was in the same situation…I respect his right to live as he did for as long as he could…I also support Ramon Sampedro’s (“The Sea Inside”)choice to not live as he was, even though he had done it for years.
I DO support their independence movement and Home Care..

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By NYCartist, November 24, 2009 at 3:26 pm Link to this comment

KDelphi:I think you are mixing http://www.notdeadyet.org with something else.  See the website for Stephen Drake’s articles on Schiavo. The topics are in the right column and easy to find.  I support the group strongly.  I am severely disabled. Not Dead Yet is a group of people with disabilities and Drake is research analyst who writes the blog.  Diane Coleman is one of the founders.
I’ll look back to see if you have something else for me.  Please take a look at the blog of Not Dead Yet.

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By Blackspeare, November 24, 2009 at 3:23 pm Link to this comment

Yigal Arens…

Yes, it was quite apparent that the facilitator was moving his hand around the keyboard a little too quickly for someone who is in a paralysis-like state.  This is a scam either by his family or others for notoriety.  PT Barnum said it correctly, “You can fool some of the people some of the time” and this is a prime example, but you can’t fool us!

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By KDelphi, November 24, 2009 at 2:33 pm Link to this comment

That is why everyone should have a living will, etc. I wouldnt have thought that all those years of just being “conscious” (if, in fact, he was)were worth it. But, Ive already made that decision with my family, my doctors and a lawyer—did it years ago.

NYCArtist—I have had some experience wtih notdeadyet and understand that they speak for disabled people and I agree…but I was most offended to see them marching outside of Terri Schiavo’s “nusrsing home” and trying to give her bread and water when she didnt have enough brain left to swallow. She was “alive”
because her parents had money and wanted to pretend she was alive. To force someone who is brain dead to keep breathing for the sake of family is about the most unloving thing I can think of.

I dont think anyone should not recieve whatever care they need to have a quality of life they can accept..but when you havent expressed what you want and cannot anymore, I dont think we should keep a heart beating with no brain funciton.

I also believe that assisted suicide is humane and should be allowed.But, as it is now, the poor often get it without their wishes…there is a vast difference in how long a premature infant stays on a respirator, according to whether his parents have insurance or govt medical coverage…(and thats why I support HR 676)

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By Mike Skeptic, November 24, 2009 at 1:50 pm Link to this comment
(Unregistered commenter)

This article is garbage and discredits this site.

Facilitated Communication is a G*ddamn scam.

http://www.skepdic.com/facilcom.html#news

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By Virginia777, November 24, 2009 at 12:37 pm Link to this comment

I think the locked-in syndrome could be used to as a metaphor for so much of the political apathy we are witnessing, there are artificial boundaries people place themselves in, unable to communicate in their communities, afraid to challenge the status-quo.

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By Jim Yell, November 24, 2009 at 11:52 am Link to this comment
(Unregistered commenter)

I cringe at these stories. It isn’t that I haven’t seen near miracle recoveries, but even the potential isn’t there all of the time or even the majority of the time. Every long term care is very expensive and if carried to its logical conclusion the effort will over whelm any health care delivery system.

What is really an outrage is the number of people with illnesses that can be successfully treated and even cured but will not happen because of lack of access to affordable health care. It will always be unaffordable under our current system. It will always be unaffordable because either the money for health care is lost to rapacious profits or the mandate to keep everyone on life support will overwhelm the resources available to support this.

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By gerard, November 24, 2009 at 11:39 am Link to this comment

Why we need unlimited compassion for everyone:  Because we are all “locked in” one way or another, but one of us somewhere may at any moment “wake up” and discover an answer to global warming, to putting an end to wars, to feeding the hungry, healing the sick, “securing the blessings of liberty for ourselves and our posterity.” Cheers!

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By Bill, November 24, 2009 at 11:09 am Link to this comment
(Unregistered commenter)

This is “facilitated communication” (FC), which has been discredited for decades.

The person holding his hand is the one doing the typing, not the patient.

It’s particularly cruel to the loved ones of the patient.

A simple test would be to place the patient’s hand on the keyboard, then have the aide step back several feet and see if the patient can still type.

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By NYCartist, November 24, 2009 at 10:44 am Link to this comment

Why you need to read http://www.notdeadyet.org

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By Ed Harges, November 24, 2009 at 8:07 am Link to this comment

This would never have happened in the US. He would have been cut off by his
insurance company and have died long ago.

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By idarad, November 24, 2009 at 5:57 am Link to this comment

It won’t be long until the wingnuts use this as a failure of social medicine (if its European its socialist), and another example of why health care “reform” should not be passed.

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By liecatcher, November 24, 2009 at 1:27 am Link to this comment

This is just another example of an iatrogenic
disaster.

For the American experience please Google

“Medical system is leading cause of death and injury
in US”

to understand why all the healthcare hype is just one
big hoax

& every year, if all the cases would be counted,
almost one million

patients are slaughtered each year becaused they were
“locked-in”

to a spurious money making scam.

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By Yigal Arens, November 23, 2009 at 11:29 pm Link to this comment
(Unregistered commenter)

It’s not clear that what is being described in these news reports
is actually true. As pointed out by @michaelshermer on Twitter,
Rom Houben is now “expressing himself” through the help of a
“facilitator” that is quite clearly the one doing the typing. This is
obvious in the news video MSNBC has:
<http://www.msnbc.msn.com/id/31388323/vp/34111007#34111007>.

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