When I was a little baby, my mother accidentally fed me some medicine that was intended for grown-ups, and since that was a sleep inducer, I slept for two days straight, without any interruption by my spirit, while my mother believed I was not alive any more.

Now I’m a grown up, and I’m intended to take the pill adults are supposed to take. But even then, it’s mental. I took it last night in order to stem a whirlwind of allergies, and don’t remember anything since I slept. My dreams, thoughts, nada.

I wasn’t able to wake up in the morning and go about my daily routine, and now I know, it was because of this. Even on the phone yesterday, I have no idea what I said. I’ve slept for some thirteen hours now, and my head still feels like it’s falling off my neck.

You say weed and alcohol are things that would make one pass out? Haha, this is like till where my capacity to endure all this would stretch out to. It’s mental.

x EdgyShark x

P.S. I could have written a lot more, but I just can’t bring my eyes to open properly.

E’ in coma il tifoso nerazzurro di 36 anni che oggi è salito in piedi su una balaustra del secondo anello dello stadio di San Siro a Milano, durante il match Inter-Fiorentina, ed è caduto tra gli spalti del primo anello, travolgendo un altro tifoso. Da quanto si è saputo, l’uomo, ora ricoverato all’Humanitas, quando è stato trasportato in ospedale era già in condizioni molto gravi e sarebbe giunto privo di conoscenza. Il tifoso è salito sulla balaustra per esultare dopo il gol di Milito e dopo un’altra azione in cui sembrava che Eto’o segnasse il raddoppio. L’altro tifoso, un 46enne allo stadio con il figlio, è stato invece trasportato all’ospedale San Carlo.

*Jakarta Globe, 5 December 2008

We hear the sirens first and then see the flash of green as they zip past. The paramedics of Ambulance 118 are the heroes of the streets, working around the clock to save lives and lend a tender hand.

7:30 a.m.
Even in the early hours of the morning, the parking lot of Cipto Manungkusumo Hospital, or RSCM, in Central Jakarta is filling up fast.
Five ambulances are parked in front of the children’s wing. “Ambulans Darurat,” or Emergency Ambulance, has been stenciled boldly in red on the front of the forest-green vehicles.
A man with plump cheeks and a short, squared-off beard is inside one of them, checking an oxygen tank.
“We have to go to Manggarai [South Jakarta] to fill up our oxygen tanks,” Dany Widyanto says.
At 26, he’s been a paramedic for four years. An older man with a perpetual smile, dressed in the regulation blue Ambulans 118 uniform and scruffy sneakers, introduces himself as Habibi Dukhri.
“We always travel in teams of two. Dany and I take turns driving,” Habibi says.
Today the two have been paired up for their 12-hour shift, covering Central Jakarta.

8:00 a.m.
At the oxygen-filling station, Dany and Habibi run into Marlinawati Susana and Mutmainah. Known around RSCM as Marlina and Imut, the two women are also attending to their tanks before their shift begins.
“We have to check our equipment every morning because patients are more likely to die from lack of oxygen than delays in [getting to the hospital] caused by traffic jams,” Marlina says, referring to the maddening traffic conditions in the Indonesian capital.
Slender and long-limbed, she has pulled her hair back into a ponytail, accentuating her pale, heavily powdered skin.
Her partner, Imut, wears a jilbab, or headscarf, and no makeup. She lets Marlina do most of the talking.
They have both been with the ambulance unit for more than two years.
“Almost half of our crew are women. There is no difference between us [men and women],” Habibi says.
Marlina says, “People work here because they like a challenge.”
The four of them say their goodbyes and hop back into their ambulances.

8:20 a.m.
Habibi and Dany leave the oxygen station for the Hotel Indonesia traffic circle in Central Jakarta, where they are expected to “stand by” from 8 a.m. to 10 a.m.
They are not worried about being late; it is likely they will just be sitting there, waiting.
“In the beginning, I liked the idea of going all around the city,” Habibi says. “And after doing it for a while, I began to really enjoy it. In the hospital, there is a senior-junior system. Here, [as paramedics] we are all equals.”
In the five years that Habibi has been a paramedic, not a single patient has died in his ambulance. “Victims sometimes die when we arrive late on the scene, but never in the ambulance because we always stabilize them before moving them,” Habibi says.
Even in heavy traffic jams?
“The response time for road accidents is often longer due to traffic. Sometimes when we get there, the victim has already been taken away in a bajaj [auto-rickshaw] or taxi,” Habibi says. “We often lose victims that way.”
Ambulance 118 is a national government ambulance service. The service is free for people with welfare cards, as well as road accident victims. For house calls and hospital-to-hospital transfers, there is a flat-rate charge of Rp 200,000 ($17), regardless of mileage. The cost includes all necessary services and supplies.
“People don’t know much about us,” Habibi says. “Sometimes, when there is a road accident, say someone on a bike, they often refuse our help because they think they have to pay.”
Dany is broody and seemingly fed up. But he concedes, with a roguish gleam in his eyes, that he is in his element when on the graveyard shift: from 7:30 p.m. to 7:30 a.m.
“The most exciting are the nightclub victims,” he says. “You never know what is going to happen! Someone might be drunk and try to pick a fight with us.
“That is a cause of distress for paramedics because our safety is important. If it is not safe for us, it is better we refrain from treating the victims until backup from police or another unit arrives. Don’t try to be a hero.”

8:40 a.m.
At the traffic circle in Central Jakarta, Habibi relaxes in the back of a police pick-up truck fitted with benches and a canvas roof. He has found a friend: a policeman directing the rush-hour traffic.
“We like to call ourselves street children,” Habibi says with a laugh.

9:58 a.m.
Habibi takes a call and the men get into the ambulance.
“We’re off to the north now. They are out of ambulances in Kelapa Gading because most are them are being used to take welfare card holders to the hospital,” he says. RSCM has only five operational ambulances.
“Before, when we had 15 ambulances, our response time was excellent. At times, three ambulances would converge in one place,” he says. “We aim for good response time.”
Dany sounds the siren and the ambulance sails through a red light. Drivers honk their horns in protest. They still do not know the nature of the emergency.
“We often get crank calls, so our operator will take a call, write down the information, and call the person back at their number,” Habibi explains.
The ambulance veers into the busway lane, which is lawful in an emergency. “Ambulances have priority on the road but people still don’t realize it,” Habibi says.
He rings the operator for the exact location, then reports to Habibi: “We’re standing down. There is another ambulance closer.” They turn back to Menteng, Central Jakarta.

10:45 a.m.
Habibi pulls into a small police post at Suropati Park, Menteng, to use the bathroom. Dany perches himself on a steel bench. His partner returns with milky coffee. “I smoke sometimes. In the field, we can survive all day on just coffee and cigarettes,” Dany says.
“They call us ambulans gaul [cool ambulance drivers] because we are all so young,” he laughs.

11:00 a.m.
Habibi’s phone rings. “Here we go,” he says. “Standby for a protest? MPR/DPR? Inside or outside the building?” he asks the operator, referring to the People’s Consultative Assembly and the House of Representatives buildings.
“Two units have been called to be on standby for this protest,” he tells Dany. They get in the ambulance and Habibi starts reading his newspaper.

11:20 a.m.
Dany parks in the street outside the legislative complex and walks over to meet Suyitno and Eka, from the Ambulance 118 unit in from Tanjung Duren, West Jakarta.
“The protest has not even started,” Suyitno reports.

11:30 a.m.
A man in uniform approaches the ambulance. A young woman wearing a pink T-shirt is slumped in his arms, her long hair covering her face.
A crowd forms. Within seconds the woman is being given oxygen through a nasal cannula.
“Wake up, Mega,” Dany says, once he has discovered the victim’s name.
Habibi pops around the door with an oxygen mask. “Dany, use this instead.”
Habibi and his colleagues chat with the victim’s father, seemingly unperturbed by the situation. Her husband appears with a plastic cup of tea.
The woman stirs, managing to raise her head just enough to sip the sweet tea.
“How is she?” Suyitno inquires. “Stable,” comes the reply from inside the ambulance.
The woman had followed her father to Jakarta from Ngawi, East Java Province, to support him in his protest to increase the tenure of village administrative leaders.
Although Habibi advises the patient to rest, the husband calls a taxi and they leave.

12:05 p.m.
A man approaches Eka and asks her to check his blood pressure, which she does. It is not long before a Civilian Protection Service officer enters the ambulance. “What is your complaint, sir?” He too is worried about low-blood pressure. Then comes an elderly gentleman with a black cap.
“I have a headache,” he says to Eka, as she dutifully pumps the blood pressure meter.
Habibi makes small talk with the men about the protest.
“If one comes in, the rest follow. They are often looking for headache meds,” explains Habibi, as Suyitno informs the growing crowd of the same thing.
“We don’t supply oral meds,” he tells the people lining up. “We only carry them for emergencies and evacuations.”
Three more men ask Habibi to check their blood pressure. “They will all line up because they think we are offering freebies,” Suyitno says.
“My chest hurts,” one man says.

12:50 p.m.
Eka wants to pray at her post in Tanjung Duren, West Jakarta. Everyone heads there for lunch.

1:00 p.m.
Habibi heads to the upper level of the Tanjung Duren Fire Station with Dany. They meet up with Purwiyanto, the area coordinator for West Jakarta. “We don’t have a post of our own, so we are sharing with the fire department,” Purwiyanto says, as the two paramedics settle on the floor.
Habibi rings headquarters to report on his whereabouts. On TV, actor Gading Marten is trying to find lines on a show called “Missing Lyrics.” Looking on, the paramedics dig into their meals.

2:40 p.m.
“We are picking up a patient from Pelni hospital and bringing him home. We do not know the condition of the patient yet,” Habibi says as they leave the fire department.
Turning onto Jalan S. Parman, they are faced with a traffic jam. “This is Jakarta,” comments Habibi as Dany switches on the siren. Dany looks agitated. “I don’t like jams,” he says. Habibi falls asleep.

3:05 p.m.
“Don’t take a ticket,” Habibi tells Dany as they enter Pelni Hospital in Central Jakarta. Once stationed in front of the emergency doors, Habibi sets up the gurney. Dany rolls it in.
“Straight ahead,” instructs the hospital staff member. The patient’s family greets them. A relative helps Habibi and Dany with the best way to get back home. “Go past Pondok Kopi because it is not too far. The patient has sores on his back,” she says.
In a darkened room with three beds and green pleated curtains, the patient lies on his back: A frail elderly man, covered only with a blanket, he has had a stroke and been at the hospital a week. A nurse dresses him carefully.
Dany and Habibi have their latex gloves on. “Sir, we are going to lift you up slowly, OK?” Habibi says.
They wrap the patient in blankets and lift him onto the gurney. “Does it hurt?” Dany asks. The patient moans, almost inaudibly.

3:20 p.m.
Everyone piles into the ambulance. The patient’s daughter-in-law sits up front. Habibi is with the patient in back. The patient asks Habibi to pull off his Band-Aid saying it pains him. “It hurts from the injection, Pak. This is to prevent bleeding,” Habibi explains.
He starts making small talk. “How old are you, Pak?” he asks. “72.” He gently holds the old man’s hand and takes his blood pressure. “Slowly, Dany,” he says as the road gets bumpy. The patient’s feet peek out of the blue hospital blankets, crusted with sores and cracked skin.
“Sometimes we travel out of town, like to Solo in Central Java when patients want to spend their last days at home,” Habibi says. “Then we would have a mechanic with us, in case the vehicle breaks down.”
The patient asks Habibi to scratch an itch on his left arm. Up front, Dany is trying to find the exit. “There have been coma patients who go home to die. We have to be there when the families pull the plug,” Habibi says.

4:10 p.m.
The ambulance arrives at the patient’s home in Pulo Gebang, East Jakarta. Three dogs roam around the patio; paw prints pepper the floor. Dany and Habibi roll the gurney into the house. With the help of the patient’s relatives, they lift him onto the bed. “Pak, get better soon,” Habibi says before walking back to the car.
He fills out a form with the patient’s details for the relatives to sign.

4:20 p.m.
Habibi fills out the daily log book and helps Dany with directions back to Central Jakarta. “A GPS system was set up for Jakarta but due to a lack of funds, it was never turned on,” Dany says. “We know our way around Central Jakarta but sometimes we get calls to unfamiliar places and have to ask for directions.”

5:25 p.m.
Back at RSCM, the parking lot is full. Dany manages to find a spot and turns off the engine. Habibi goes to find snacks. “Before we had a post at this hospital, but no more. So we chill in the ambulance,” Dany says.
When Habibi returns with fried snacks, they talk about the rise of new ambulances in Jakarta hospitals.
“What irks me is that some people still think of us as mere drivers. It is to be expected, I guess, with all the fancy new ambulances nowadays being driven by drivers who are not trained paramedics like us,” Habibi says.
“Yet, people only trust us when it comes to big emergencies,” Dany adds. “Because if you compare us with fresh medical grads, they lose out to our experience in the field.”

6:00 pm
Habibi has gone for evening prayers. Two women approach the car.
“Pak, can you take a patient to an old folks’ home on Radio Dalam?” they ask Dany. He asks about the patient’s condition. He is still in the intensive care unit.
Dany calls headquarters to find out if the night-shift paramedics are available.
“Can you not take him yourself?” the woman asks.
“I am sorry, it’s procedure to have two paramedics in the ambulance,” Dany says. “And we recommend moving the patient late at night, when there is less traffic. Tonight, all the patients that have to be transported from RSCM are ‘bad’ ones,” Dany says.
“A ‘bad’ patient does not have all his ABCs [airways, breathing, circulation] in working order. Usually it’s the airway that’s most problematic. Our patient today was a ‘good’ one because he was stable.
“Sometimes hospitals are funny. They call us to take patients away when they are critical or ‘bad’ because they consider it bad luck if they die in the hospital.
It begins to rain. Habibi returns and Asep, the Central Jakarta area coordinator, jumps into the ambulance. “Not going home?” Dany asks him. Asep snorts, “Ha! I am sleeping in the ambulance tonight!”

7:20 p.m.
The rain stops. Habibi and Dany spill out of the ambulance into the wet parking lot and head home.

Intervista. Il caso Ron Houben, che riesce a comunicare dopo 23 anni? «Un uomo vale anche da fermo». All’estetica moderna non piacciono i risvegli, «ma solo il caso Pistorius».

«Il morbo di Cronach ha ucciso le menti di tutti. Siamo sull’attualità di basso rango, analisi di omicidi di cui nulla ci interessa dal punto di vista esistenziale. Dobbiamo rifarci il senno, io sono per la chirurgia etica. Rouben? Il suo urlo racconta la complessità del problema, siamo diventati dei plastici della vita, non parliamo mai di cosa succede dentro un corpo e un’anima» dice al telefono Alessandro Bergonzoni a proposito del quarantaseienne belga considerato in «stato vegetativo permanente» da 23 anni dopo la paralisi per un incidente stradale.
Ron Houben, grazie a un computer, ha riassunto in una frase l’altro dramma, quello del risveglio invisibile: «Urlavo ma non riuscivo a far sentire la mia voce». Mentre la realtà era diversa: «Vivo e vegeto. Ma soprattutto vivo!», come lo slogan coniato dall’attore e scrittore bolognese per l’associazione Amici di Luca di cui da anni è testimonial. Costituita nel 1997 per provvedere alle cure necessarie per risvegliare Luca, ragazzo bolognese di 15 anni in coma per 240 giorni e purtroppo scomparso nel 1998, l’associazione è riuscita a dar vita alla “Casa dei Risvegli”, un centro innovativo di riabilitazione e di ricerca inaugurato nel 2004 a Bologna nell’Ospedale Bellaria. Il primo slogan di Bergonzoni fu: «Un cavallo che vale lo danno vincente, un uomo in coma lo danno per perso, io punto tutto sui risvegli».

Oggi quanto vale un uomo in coma? «Il problema è culturale, scientifico, spirituale. Si è stabilito che conta solo il corpo che funziona per intero, che tutto deve essere indirizzato all’utilità, al desiderio, alla produzione e quindi culturalmente il terreno per poter parlare di queste cose è friabile e poco fertile. Scientificamente, siamo di fronte a ex ministri della sanità che dicono “curiamo i vivi e lasciamo perdere i morti”. Ma le certezze che la scienza sbandierava (non all’unanimità però), non ci sono più. Non voglio citare Eluana: non sono né contro né per, non sono in contrasto come invece la scienza che dogmaticamente dice “questo è, e non altro”. Noi dobbiamo andare oltre».

È sufficiente il clamore perché se ne parli in maniera approfondita? «No. L’interruzione dà fastidio a meno che non diventi Pistorius, o un testimone dello spettacolo. Perché allora diventa produttiva. Chi non vuole vedere solo l’estetica, rimane da solo. Non sono innocue queste trasmissioni, hanno costruito il mito della bellezza unica. Su internet qualcosa di diverso si trova, ma è evidente che domina la tv. È andata persa la dignità, facciamo un festival!». Quale è l’atteggiamento dei media? «Fanno attività di distrazione di massa. Ti aiutano a pensare ad altro, tutto è divertimento. Cosa resta? Lasciamo il dolore in mano ai Signorini? Ma stiamo scherzando? Non bisogna più produrre certa cultura. La pornografia è il non parlare di altro. Non abbiamo concepito davvero la diversità. Su nero e bianco e rumeno, parliamo tranquillamente. Ma sull’inguardabile, siamo a zero. In tempo di crisi, è difficile raccontare che un corpo non produce e non può dare ma che pure racconta e dà per sé».

Ci sono altri casi di invisibili risvegli? «Uno è Giampiero Steccato, ex impiegato delle ferrovie di Piacenza, è paralizzato da oltre 10 anni perché affetto dalla sindrome locked-in. Ma grazie agli assistenti, come nel racconto dello scafandro e la farfalla di Bauby, riesce a comunicare anche se muove solo un mignolo, le sopracciglia, però ci sente. Anni fa ha chiesto di vivere, ma nessuno l’ha mai intervistato o portato in tv. Interessa a qualcuno? Questo è il tema. Si continua a parlare di norme, ma non di enorme. Noi facciamo una campagna da cinque anni, ma mica il tifo. Non dobbiamo vincere, né perdere, ma concepire l’inconcepibile come concepibile. Ron ha dimostrato che come con Munch, esiste l’urlo della vita».

Perchè ne fa anche una questione spirituale? «Spirituale, ma non non religiosa. L’anima di Kandinsky e Terzani la festeggiano ovunque nei festival, ma poi tutti tornano a casa e si parla di norme. Non esiste una cultura su cosa sia un essere. Se è fermo e non parla è morto, se non produce e non fa sorriso, è morto. Quando smetteremo di parlare di morte, di uccisioni, di giallisti, e cominceremo ad affrontare ben altri misteri? Lasciare questo discorso solo alla Chiesa o alla scienza? Io non ci sto. Su Ron la scienza si rode le mani, “sta a vedere c’è dell’altro”. Nessuno parla delle altre medicine se non della medicina unica, e il resto del pianeta? Ora tratteranno Ron come un caso eccezionale o un miracolo, tra Chiesa e laici va sempre a finire in questo modo. Nessuno vede la malattia o il danno come metamorfosi o rinascita. La realtà è che sono i sani che si devono risvegliare. Che hanno mancanza di amore per lo sconosciuto. Perché fa paura. “Dobbiamo ritrattare anni e anni di scienza?” Mi sa di sì».

Fa comodo la definizione di «stato vegetativo permanente»? «Certo, così siamo tutti sicuri e non abbiamo più paura. Raccontiamo invece altre scelte. Non è che bisogna vivere a tutti i costi, Welby non è stato disumano. Ma l’automatismo o così o altrimenti no, è pornografia. Faccio continuamente incontri negli ospedali, all’università. La gente mi dice “ma questa è poesia…”. Il mio vuole essere un r’acconto, erre apostrofo acconto, un acconto di tante verità perchè non c’è più una banca dati ufficiale».

E la politica? «I nostri politici sono quelle persone che hanno avuto all’asilo l’educazione della paura. I sani fanno case, affittano, producono. Tutta la malattia è letta attraverso il codice della finanza e dell’economia. Siamo ammalati di prodotto. “Una vita così non la vorrei fare” dice sempre qualcuno: ma è un problema tuo! Loro la vorrebbero fare! Questo è il delitto, altro che chiedere ai giovani di aggiustare la lingua italiana. Come per gli handicap dei giovani. Bisogna insegnare ai loro coetanei a rapportarsi con l’handicap. Qui si discute sul crocefisso, ma hai dentro qualcosa per andare a leggere i martoriati? La scienza se non fa filosofia non parte, e la medicina sbaglia se si crede di essere da sola, è il silenzio dei sani».

Adesso cosa succederà? «In realtà sono disperato, perchè chissà quante altre persone stanno provando a chiedere ascolto come Ron. Non mancano le strutture, manca l’ascolto, prima ancora di broncoaspirazione, o della diatriba sull’alimentazione. Insomma, chi è che da oggi andrà dagli sfasciacarrozze a cercare dei motori da salvare?». Fiction estreme come Dr. House possono aiutare a raccontare questa complessità? «House un minimo lo fa, ma è sempre spettacolo, crea assuefazione. Quei casi li conosci cronologicamente, ma non fai un lavoro su te stesso. La fiction resta fiction. Queste cose sono complesse, e soprattutto non sicure. Picasso, Bacon, Artaud parlavano di paure e insicurezza, e non delle città sane».

Orbene, ci sono i soliti scettici ai quali non va giù che una persona più sfortunata di loro possa essersi ripresa dopo 23 anni, seppur parzialmente, dalle conseguenze di un grave incidente.
L’assurda obiezione al fatto che l’uomo, Rom Houben, sia in grado di comunicare con apprezzabile destrezza consiste nel far presente che – in questo video – il suo digitare la tastiera avviene mentre tiene gli occhi chiusi.
Ah sì? E, allora, che dire di questo? O di questo?

(hat-tip Bioetiche)

]]> http://mpj2009.wordpress.com/2009/11/27/un-faux-coma-de-23-ans/ Fri, 27 Nov 2009 12:12:04 +0000 mpj2009 http://mpj2009.wordpress.com/2009/11/27/un-faux-coma-de-23-ans/

Rom Houben s'exprime grâce à un clavier d'ordinateur

« Je criais, mais on ne pouvait pas m’entendre »

Rom Houben est resté prisonnier de corps pendant 23 ans, diagnostiqué en état de coma végétatif, alors qu’il était parfaitement conscient.

En 1983, Rom Houben est victime d’un grave accident de la route, dont il ressort dans un état comateux. Presque entièrement paralysé et malgré les protestations de sa mère qui ne croit pas au diagnostic des médecins, le Belge est maintenu dans un coma végétatif. Mais il y a 3 ans, l’équipe du neurologue Stanley Laureys, spécialiste des états de conscience altérée, procède à des examens plus poussés – scanner et IRM – qui révèlent, contre toute attente, que le patient a une activité cérébrale. « A notre grande surprise, l’activité de son cerveau était comme chez vous et chez moi. » a expliqué le Professeur Laureys à la RTBF.

L’homme, qui est resté allongé dans un lit de l’hôpital de Liège pendant 23 ans, souffre en réalité d’un syndrome d’enfermement, the locked-in syndrome en anglais, qui désigne un état de conscience minimale, dans lequel les fonctions intellectuelles du patient sont préservées. Depuis son accident, Rom Houben était conscient et ressentait des émotions qu’il était simplement incapable d’exprimer. « Les gens me considéraient comme mort. » a-t-il confié dans un entretien au Daily Mail. 

L’annonce, le mardi 24 novembre 2009, de cette incroyable résurrection soulève de nombreuses questions d’ordre éthique, abondamment relayées par les médias d’information. Le spécialiste qui a sorti Rom Houben de sa prison estime que 40% des patients considérés en coma végétatif pourraient avoir une activité cérébrale. » C’est donc, selon lui, une simple erreur de diagnostic et un manque de suivi de l’évolution clinique du patient qui ont conduit les médecins à passer à côté du syndrome d’enfermement du M. Houben.

Selon le Professeur Denis Safran, chef du service d’anesthésie-réanimation à l’hôpital européen Georges-Pompidou, qui s’est exprimé dans l’Express, « une simple imagerie médicale aurait permis aux médecins de vérifier que leur patient avait encore ses fonctions cognitives ». Cette information relance également le débat, complexe, sur l’accompagnement des personnes en fin de vie, lorsque ces personnes sont apparemment plongées dans le coma.

Actuellement, Rom Houben suit toujours un programme de rééducation, en Belgique, et s’exprime par le biais d’un clavier d’ordinateur. L’objectif pour lui est désormais, trois ans après sa « seconde naissance », d’améliorer ce moyen de communication et de gagner en autonomie. Il souhaite également partager son histoire avec le plus grand nombre et accorde ainsi régulièrement des interviews à divers magazines européens. Il envisage même d’écrire un livre, comme l’avait fait le journaliste français Jean-Dominique Bauby, dans le Scaphandre et le papillon.

Laura Heulard

Il 17 agosto scorso un uomo di 56 anni fa il suo ingresso in un ospedale newyorchese, il Presbyterian Hospital/ Weill Cornell Medical Center. Non si sente bene, barcolla, chiede aiuto. Un minuto più tardi collassa.

Il cuore di Joe Tiralosi da quel momento smette di battere per 47 minuti. Joe è clinicamente morto. Ma i due medici che si stanno occupando di lui, il dottor Rahul Sharma e il dottor Flavio Gaudio, non demordono e continuano a cercare di rianimarlo.

Dopo 4.500 massaggi cardiaci e otto scosse di defibrillatore Tiralosi ricomincia a vivere. “Credo che la parola giusta nel mio caso sia miracolo”, ha detto Joe all’emittente televisiva locale Cbs2, dopo essere tornato la scorsa settimana nella sua casa di Brooklyn dove lo aspettavano i suoi due figli.

E’ stata una procedura medica particolare, non disponibile in tutti i pronto soccorsi americani, a salvare la vita al 56enne. Sul suo corpo sono infatti stati applicati degli speciali cuscinetti raffreddanti che hanno abbassato la temperatura corporea a 33 gradi centigradi, evitando così danni irreversibili a livello neurologico.

Ed è così che Joe Tiralosi è riemerso da quel limbo insondabile che è il coma farmacologico indotto, tre giorni dopo essere tecnicamente morto nel pronto soccorso di un ospedale, a New York City.

Happy Turkey Day from TTW. On this special occasion, it is a tremendous blessing to be in Tulsa, Oklahoma and to be a theatre artist in a town with tremendous promise. I am thankful for all the friends I’ve made, collaborative opportunities that have brought some great theatre to the area, and for the great things that will be happening in the future. At this time of rest and family cheer, don’t forget those extended theatre families that are close to us. Happy Thanksgiving Everybody!

Hey, did you know that tomorrow is Thanksgiving. Only the second most wondrous holiday of the entire year. A whole day devoted to thanks… oh and turkey, mashed potatoes, pie, green bean casserole, sweet potatoes, gravy, among a multitude of other artery clogging foods. (Yum). It’s one of those days I look forward to all year. ALL YEAR PEOPLE. Sometimes I think that I need to buy a deep freezer so I can stock up on turkeys and make Thanksgiving a monthly ritual. If by chance this happens, keep your tabs on me because I may need an entry form to the Biggest Loser after a few years. It’s pure love.

On the other hand I am not a fan of the Macy’s Thanksgiving day parade. I don’t really “get” parades. Especially the ones that show case ambulances and have convertibles reserved for the “Pork Princess”.  Maybe I sat through one too many Corn Carnival parades in Iowa over the past 23 years. Tractor, after tractor, after tractor followed by fire trucks and baton twirlers sort of wore me out. Once you reach the age where you can’t shove small children out of the way for Tootsie Rolls and Dum-Dums, parades sort of lose their sparkle. So, I’ll be skipping the parade, wearing sweats and gearing up for a tryptophan coma starting somewhere around 3:00. Not sure it gets much better than that!

Hope your Thanksgiving is equally as fulfilling!

Reminder: come see Alex Schadenberg, executive director of the Euthanasia Prevention Coaltion, speak in the SMC Senior Common Room tonight at 6pm! This is the third post in our series about euthanasia and assisted suicide this week, surrounding his talk.

Horrific barely begins to describe what Rom Houben went through (via Mathew Ingram):

A car crash victim has spoken of the horror he endured for 23 years after he was misdiagnosed as being in a coma when he was conscious the whole time[...]

‘I screamed, but there was nothing to hear,’ said Mr [Rom] Houben, now 46, who doctors thought was in a persistent vegatative state[...]

Doctors used a range of coma tests before reluctantly concluding that his consciousness was ‘extinct’.

But three years ago, new hi-tech scans showed his brain was still functioning almost completely normally[...]

Therapy has since allowed him to tap out messages on a computer screen.

Mr Houben said: ‘All that time I just literally dreamed of a better life. Frustration is too small a word to describe what I felt.’

His case has only just been revealed in a scientific paper released by the man who ’saved’ him, top neurological expert Dr Steven Laureys.

‘Medical advances caught up with him,’ said Dr Laureys, who believes there may be many similar cases of false comas around the world.

The disclosure will also renew the right-to-die debate over whether people in comas are truly unconscious[...]

Mr Houben said: ‘I shall never forget the day when they discovered what was truly wrong with me – it was my second birth.

‘I want to read, talk with my friends via the computer and enjoy my life now that people know I am not dead.’

Dr Laureys’s new study claims that patients classed as in a vegetative state are often misdiagnosed.

‘Anyone who bears the stamp of “unconscious” just one time hardly ever gets rid of it again,’ he said[...]

Dr Laureys said: ‘In Germany alone each year some 100,000 people suffer from severe traumatic brain injury[...]

‘An estimated 3,000 to 5,000 people a year remain trapped in an intermediate stage – they go on living without ever coming back again.’

Supporters of euthanasia and assisted suicide argue that people who have lain in persistent vegetative states for years should be given the opportunity to have crucial medical support withdrawn because of the ‘indignity’ of their condition.

But there have been several cases in which people judged to be in vegetative states or deep comas have recovered.

Twenty years ago, Carrie Coons, an 86-year-old from New York, regained consciousness after a year, took small amounts of food by mouth and engaged in conversation.

Only days before her recovery, a judge had granted her family’s request for the removal of the feeding tube which had been keeping her alive.

As medical technology improves, it serves to highlight the falsehood in labeling people as “vegetables” so that we might rationalize killing them instead of caring for them. Once again, advances in medical technology reinforce the pro-life position and affirm the humanity of vulnerable people.

• Euthanasia and Assisted Suicide: Why Not?
• Euthanasia is not appropriate care

Very sad.Some doctors, despite fancy degrees,make a cursory examination and arrive at a prognosis.
In this case brain activity should have been mapped or at least pupil dilation examination should have been more thorough.
It is very hard to digest that that this should happen because of inefficiency of the doctors.
Many of us regard doctors next to God, forgetting that medicine is an evolving science ; most of the treatments are exploratory in Nature and these procedures have contra indications as well;some of the medications are effective with out anybody knowing why and how it cures.Classic example is grand mal seizure .We know that this seizure is triggered by sudden increase in electrical discharges in the brain and Eption is prescribed to treat this.But none knows how it works or whether it has side effects.
Because of commercialization of medicine , neither the doctor nor the patient has the time to discuss family history of the patient;nor are the patients interested in slow and steady cure or allowing body to take care with minimal supportive treatment.
It is imperative for patients to inform and discuss with the doctor,your family history,your known allergies and your symptoms.
It is also mandatory on the part of the patients to check the medicines prescribed for contra indications.If yes, inform the doctor and have the medicine changed.Even then you should also chek up on internet about the medicine’s efficacy.This may sound tedious, but will save not only money, but your life as well.
When going for surgery check before hand the anesthesia that is about to me administered and see if it it is compatible with your system for some anesthetics are incompatible.
If you had any disease prior to surgery that has resulted in Edema(especially pulmonary), Nitrous oxide is to be shunned.
While getting tests being carried out make sure at the lab, it is done for the part for which you have problem i.e.what the doctor has prescribed and see that the report is yours when you collect it.Never depute somebody else to collect it.
Also popping pills based on advertisement or based on what your doctor has prescribed earlier ailments is dangerous.
All these jobs are to be carried out by Doctors.Unfortunately,Doctors have no time for patients for they are too busy.

Story:

Conscious but unable to communicate for 23 years after a car accident that was thought to have put him into a deep coma, a quadriplegic Belgian man has described how medical science finally put an end to his agonizing years of silence.

Now able to make himself understood via a computer and specially built keyboard, the man, Rom Houben, said in the Monday issue of the German magazine Der Spiegel that when doctors made the correct diagnosis, it was like starting a second life.

“I shall never forget the day when they discovered what was truly wrong with me — it was my second birth,” Mr. Houben, now 46, was quoted as saying.

Mr. Houben, who was an engineering student at the time of the accident, lives in a care home near Brussels. He was assumed to be in a persistent vegetative state until three years ago, when the breakthrough was made.

In the interview he recalled the aftermath of the car accident that paralyzed him and the realization that no one understood that he was fully conscious.

“I screamed, but there was nothing to hear,” he said. He added that he then became a witness to his own suffering as doctors and nurses tried to speak with him until they gave up all hope.

Using brain scanning techniques, Dr. Steven Laureys, a neurological researcher at the Liège University Hospital, discovered that Mr. Houben’s cerebral cortex was still active.

On Monday, Dr. Laureys, who recently published a paper on comas, said that as many as 4 out of 10 similar patients may have been misdiagnosed.

He also described the moment he realized, for the first time that Mr. Houben was fully conscious. “It was one of those rare moments where you really see that what you are doing is useful,” he said in a telephone interview.

“It was a very big moment not just for me but for the whole team, one of those few much-needed moments” for medical professionals.
http://www.nytimes.com/2009/11/24/world/europe/24iht-coma.html?_r=1&nl=todaysheadlines&emc=a4

In the Name of the Father, and of the Son and of the Holy Spirit.  Dear Lord, While living this life on earth, we are given so many decisions and rely on faith to make the best choices.  Thank you for the blessing of Rom Houben.  Although being diagnosed in a vegetative state, through true faith, love and perseverance, his family always believed his brain was okay. Because of this, they did not choose to allow him to starve to death, but rather continued to feed him regardless of their own sacrifices and grieve.  This shows true selflessness and faith.  Thank you my Lord for helping Rom to discover how he could communicate his thoughts and feelings.  He is a blessing and example to us, to try against all odds.  Through his pain and suffering, we can learn about ourselves and truly reflect on how we would make decisions and sacrifices for our loved ones.  Would I unplug and family member from life saving machines?  And if they continued to live, would I continue to have them fed?  Every life is a blessing, every life is a gift as we have been made in the imagine of You.  In Your precious Name I pray.  Amen

imagine you wake up from a coma after one/some year(s). imagine that time was enough to bring some big changes in your close ones’ lives, lives you’re supposed to restart sharing now you’re there again. will you be able to settle back in? when will you stop feeling like a stranger abruptly thrown into the lives of somebody you don’t even know that well anymore? how can you get back to a “normality” that’s not been there for such a long time? how repetitive and monotone should people’s lives be for you to get back and find them basically unchanged? how can you join a flow you haven’t been a part of for so long, and not be banged and slammed by the stream?

imagine you fell into the coma because you failed comitting suicide. imagine you just wanted to leave all that surrounded you, simply ’cause you couldn’t take it anymore and wanted to call it quits. imagine you’re now forced back into that reality. only, it’s changed, and without you of course. if you felt left apart, abandoned, alone, alienated, you’re gonna feel even more so now everybody else’s life has evolved, undergone changes, developed without you being there. all you felt too distant, too far from you, all you felt isolated from, has become even more so because you weren’t there. not only; you’ll have to live with the burden you actually made it all worse by denying your responsibilites and trying the easy way out.

imagine you find yourself in such a situation. how long would it take you to want out again? not more than a few eyeblinks, i guess.

(imagine there’s an explanation to such ramblings. imagine it lies a paragraph away).

imagine you’ve been out till about 2 am and you have to get up around 8 ’cause you have class at 9. imagine you can’t miss it, as your colleagues have told you the exam will actually be based on notes, not books. imagine you’ve skipped said class so many times it is now time to get your ass to the classroom and finally start taking some notes, rather than asking them to someone who will maybe share theirs, but making you feel like you owe them the world in return. also imagine you don’t own the world, by the way.

imagine a cough (that turns from occasional and annoying to unbearable and constant when you lie down) makes sleeping impossible to you. imagine you’re tired but can’t get to sleep ’cause of said little problem. imagine you’re so sick of it you’d sooner slice your worn out throat instead of having to bear it any minute longer. imagine your mind is also clogged by any sort of thoughts, more times senseless than so, you really could use of some sleep, regardless of classes or whatever you’re supposed to be getting your sleep for.

imagine it’s a quarter to 4 and all you can think of is why the hell you called your sore throat a “throatache” (well, like she had nothing else to ignore than your tottering english) and why in the world did you start speaking english to your flemish flatmate, in the middle of an almost all-belgian crowd at a bar, after you’ve always spoken dutch to him. imagine suddenly finding yourself thinking that sleeping in the library, while sitting and thus safe from your cough’s threatens, is not such a bad idea after all.

imagine it’s one of those nights you’re disappointed with the world, even though you’re actually living in the best place you’ve ever been, surrounded by people you feel positive things for, and without any major problem or care ahead. imagine getting close to admit you’re a spoilt and fussy dreamer, who won’t find rest unless your dreams come true exactly the way you’ve envisioned.

how pretentious. especially ’cause you’re persistently keeping your eyes closed in front of a dream come true before you could realise. does he who denies the luck he’s been given still deserve it?

does he deserve to be lucky at all?

I am sure you have heard of this story by now, but it is worth considering the case of the Belgian Rom Houben’s incredible recovery.  Actually, if you know the case, then you know that he has been aware of his surroundings all along.  For 23 years, he has been called a vegetable by the experts; yet, he has been aware of conversations about him, aware that his father passed away.  His body simply would not allow him to respond in any way.  Now, an expert has devised a way for him to respond.  For 23 years, the doctors were wrong about calling him a vegetable (PVS).  How many others were misdiagnosed?  Terri Schiavo?  Could we please decide from this point forward to call (and treat) humans, humans.  Call vegetables, vegetables.

The story of Rom Houben  disturbs me.   In 1983, doctors believed he had sunk into a coma; his parents thought otherwise and continued seeking medical advice to bolster their belief  that he was in a vegetative state.

Twenty three years later, it is discovered that in all those years, he was seemingly asleep with closed eyes and no ability to function (like a coma); yet, his brain was  functional and aware;  his body, totally paralyzed, was unable to respond in any way!

Two years ago, when my grandson, Weston, suffered traumatic brain injury, I became heartbreakingly familiar with the  terms coma and vegetative state.   Mistakenly, I  understood them to be  interchangeable designations.  No so.

Raf Casert in a release for The Associated Press explains that a coma is a state of constant sleep from which the victim, though breathing, never awakens, he is one of the living dead.

A person in a vegetative state is completely unaware of his own existence, is unable to function in anyway, but has recognizable periods of sleep  and  wakefulness.

Understanding this difference explains why there was so much poking, prodding, pinching, even yelling, as Weston  hovered between life and death those first few days.  At times he was in a coma, at others he functioned in a vegetative state.

The coma was easier to accept.  It offered hope, he would awaken from a peaceful sleep, there seemed to be no pain, no uncertainty.

The vegetative state, on the other hand, ripped at  every fiber of my soul.  During periods of wakefulness, Weston would gently moan, crimp his face as if silently crying, occasionally a tear would well in his eye.

Medical personnel assured us these were reflect actions, probably nothing more.

“NO! NO!” I wanted to scream.    They are buoys  in this roaring stream of hopelessness.  I need to be able to cling to them; I need to believe they are anchors pulling both of us toward the shores of survival.

A patient in a vegetative state opens his eyes, but does not focus.  All persons I had ever seen in this condition had a very blank look,  never  a  depth or sparkle  as the eyes, well, stared.  This was never true of Weston.

He inherited his Dad’s eyes; long dark lashes,  clear pupils with iris of  a  rich chocolate brown, surrounding a pool of sparkling golden rayed light , suggesting a devilishly playful personality.  Eyes men envy, and women die for!

Weston would open his eyes and gaze toward the large bright window; there always seemed to be questioning, confused look, not a blank, lifeless stare.

As I watched during those wake periods, my prayerful statement was, “Jehovah, I can not believe there is not life there, that sparkle seems so full  of life, please show us how to break through.”

Less than two weeks later, there was screaming evidence that my prayer was heard.

The medical experts told us there was no hope, what you see is all you will ever get, he may someday recognize you, but he will never speak or function.

As if resurrected, Weston is very much a typical fourteen year old teenager.  He goes to school, he alternately loves and fights with his younger brother, Caleb; has no problem speaking.   He is confined to a wheelchair and has limited use of his left arm, but other than that—Hey!

He has discovered that those beautiful eyes serve a  purpose beyond seeing.  Girls notice;  he still wants to appear unimpressed by the attention, but he can not hid the evidence.    His nostril twitches, he flushes, and can not hide a slight upward movement of a hidden devilishly playful grin.

We are confident,  one day he will walk

———————————————————————————————————————————————————————–
Thanks for visiting my blog.  Please leave a comment, click  ”comment”  below.  I would like to know what you think.
———————————————————————————————————————————————————————-

Gone are the days where we have to simply put do with a board with letters printed on it to talk to our dead aunts or Michael Jackson. Thanks to Belgium, we now have a touchscreen computer with a person attached that can do it for us! Watch a demonstration, courtesy of the BBC.

I am of course referring to the tragic case of a Belgian man trapped in a coma for 23 years who was, apparently, conscious for the entire time. With the help of a ‘facilitator’ he is now capable of communicating with the outside world. It is therefore unfortunate that the method they are using is fradulant.

If you haven’t already, I urge you to watch the video over at the BBC and see the method used. Originally invented by Rosemary Crossley in 1977, the facilitator supports the hand of the patient, then guides the patients hand to the key he/she wants, while the facilitator watches the screen.

This is open to abuse however. Of course, the facilitator could consciously type the words he/she wants but a naive facilitator could act unconsciously thanks to a well-known psychological phenomenon known as the ideomotor effect. This is where a person will move unconsciously simply from thought alone akin to that which happens with Ouija boards or dowsing rods.

It is a shame therefore that this person, who is most likely in a vegetative state, is being exploited by these charlatans.

Boa noite galera !

Chove muito aqui em Sao Paulo, desde as 6 da tarde. Estava na rua quando comecou o temporal. Fiquei encolhida debaixo de um orelhao por uns 20 minutos, na esperanca da chuva passar logo. Mas cada vez mais ela aumentava.

 Ja completamente ilhada, com agua quase cobrindo meus pes, pensava como seria bom se tivesse trazido o meu celular…

…quando me dou conta que estava debaixo de um orelhao ! Liguei pedindo ajuda e o Rescue veio em minutos… porque nao pensei nisso antes ?

Estava lendo uma reportagem sobre uma mulher, cuja filha de 10 anos teve seus cabelos sugados pelo ralo da piscina do predio em que mora,  e que acabou ficando irreversivelmente em  estado vegetativo. A historia foi contada na revista Epoca. A mae criou um blog ( Flavia vivendo em coma) para contar o dia a dia de cuidados com sua filha, que hoje tem 22 anos. Ela cuida dos cabelos da filha, escova seus dentes, faz aspiracoes de secrecoes varias vezes ao dia, enfim, faz de tudo pelo bem estar dela. Lendo o site é possivel perceber a dedicacao e o cuidado que ela tem para com sua amada filha.

Isso me lembrou de um caso que ouvi sobre um medico que tinha um filho jovem de 22 ou 23 anos. Um dia, o rapaz sofreu um acidente de carro que o deixou em estado vegetativo. Depois de um tempo no hospital, a familia o levou para continuar o tratamento em casa. Apos 2 anos,  o rapaz contraiu uma pneumonia, muito comum em pessoas que estao no estado como ele.  Mas o que me surpreendeu foi a opcao do pai, medico. Nao medicar o filho. Com isso , o jovem rapaz veio a falecer em poucos dias.

Sera que o pai , que já nao aguentava mais ver o filho , sempre tao alegre e cheio de vida, agora imovel e sem contato com o mundo exterior, agiu errado? Sera que a mae, vendo a filha em estado vegetativo irreversivel, mas que no fundo guarda a esperanca de um dia ouvir sua voz novamente, nao esta sendo egoista ao tentar prolongar a vida da filha ?

Realmente é muito dificil dizer, embora seja facil jugar os outros. Eu mesma nao saberia de qual forma eu agiria se vivesse nessa situacao. A verdade é que cada pessoa enfrenta da sua forma os problemas que surgem na vida. Certo ou errado, acredito que o amor filial sempre fala mais alto nestas horas, seja para deixa-lo partir, seja para mante-lo junto de si, oferencendo o melhor até que o momento da separacao venha por si mesmo.

Well, I’m healthy enough to be annoyed, so I guess that’s something.

I found this news story this morning, and skimmed it briefly, but didn’t pay a great deal of attention, and I was at work so I didn’t watch the accompanying video clip. It was a slightly unsettling piece about some guy who’d been in a coma for years, decades even, and apparently turned out to have been conscious but paralysed the entire time.

An idea that makes you shudder that much is bound to make for a great hook. It’s pretty scary to think of, being trapped in your own body but unable to move or communicate in any way, still awake but helpless as everyone assumes that you’re essentially asleep, unconscious, or braindead. It was unnerving, but I wasn’t in a mood to take a particular interest in it. I wondered briefly about just how much of a recovery he’d made, what state he was in now, whether he’d really been talking at length about his ordeal, and how he’d retained anything resembling sanity after living through such a trauma as constant and complete immobility for more than twenty years, and then I got on with some filing.

Well, the skeptical blogosphere brought the same story back to my attention later in the day, and I took a little more notice this time.

Turns out it’s almost certainly complete bullshit.

The coma guy isn’t actually any more awake or conscious or active than he ever was. If you can watch the video in that BBC article, you’ll see the method by which he’s been “communicating” about what he’s experienced over the years. (If it won’t let you see it because you’re not in the UK, have a YouTube link). See where that woman holds his hand and moves her hand with his as his finger presses those buttons? The bit where, if you didn’t know what was going on, you’d be forgiven for thinking that she was just using the guy’s fingers to press the buttons herself, and she should really stop doing that as it’s in rather poor taste?

Yeah.

This is called “Facilitated Communication”, and no solid evidence has yet been found to demonstrate that it’s anything more than utter, utter bollocks. And people have looked for the evidence where it ought to be, and still come up short. This is one of those times where an absence of evidence really is pretty good evidence of absence.

I’m going to prioritise FC for a full Skeptictionary entry, but you can get a reasonable gist by just watching it in action. It’s in worryingly common use with autistic children, and involves the “facilitator” providing “support” to a subject, allowing them to type their thoughts on a keyboard in a way they would otherwise be unable to.

Except there’s no evidence that it does that. And it really ought to look dubious to you from the outset. For one thing, that guy’s typing fast. He’s barely even looking at the keyboard, but he’s able to make little micro-movements with his hand (consistent with total paralysis, remember) at such a rate, and with such precision, that the woman holding his hand can feel exactly where he’s trying to point and hit the right keys several times a second. That’s really impressive. I think I’d have trouble matching that kind of speed with just my finger, and I’m a professional typist who’s not even in a coma.

I also hope it’s occurred to you how easy it should be to test something like this. You may also have noticed that the “facilitator” has her attention fully on the screen the entire time she’s helping the guy type. What would happen if she couldn’t see where he was typing, but he could? Or if a question was written down and shown only to him, not her? Would it still work? It ought to, right? Why not give that a try?

The heroically amazing Randi has written about this, and recounted some of his experiences testing FC with autistic children some years ago. The phenomenon failed every test of authenticity put to it, and it seems to be exactly the same thing going on in this new story.

Even if this is a real effect, you would (because you’re a smart person, I can tell) expect coma guy to be happy to comply with some basic tests of his abilities. Surely he can imagine more clearly than anyone the horrors of having someone trying to speak for you, and making fraudulent or delusional claims to have special powers to communicate with you, while you are helpless to contradict them or deny it. And you can’t deny this possibility unless you’re a raving ideologue. Of course someone could pick up a coma patient’s hand, use their fingers to type, and claim to be facilitating their communication. I bet it’s really, really easy. Why would you not ask more questions to make sure that that isn’t what’s really going on?

If you’re a grieving mother desperate to believe that your child is still with you, then there are a number of acceptable answers to that question, but if you’re a medical professional or a news-gathering organisation then there’s no excuse.

I’m running out of steam, but this is genuinely pissing me off. I’m yet to see even a token skeptical comment in any of the mainstream reporting on this, despite its obvious implausibility. Gah. Well, at least I’m writing again.

Edit 26/11/09: And before too long, Orac’s all over this.

From the Associated Press:

BRUSSELS – With a caretaker holding his hand, a Belgian man who was diagnosed as comatose for 23 years typed out a message Tuesday that he felt reborn after decades of loneliness and frustration. A leading bioethicist, however, expressed skepticism that the man was truly communicating on his own.

Car-crash victim Rom Houben was diagnosed as being in a vegetative state but appears to have been conscious the whole time, doctors here said. An expert using a specialized type of brain scan that was not available in the 1980s says he finally realized Houben was conscious and provided him with the equipment to communicate.

Assisted by a speech therapist who rapidly moved his finger letter by letter along a touch-screen keyboard, Houben told AP Television News that years of being unable to move or communicate left him feeling “alone, lonely, frustrated, but also blessed with my family.”

The therapist, Linda Wouters, told APTN that she can feel Houben guiding her hand with gentle pressure from his fingers, and that she feels him objecting when she moves his hand toward an incorrect letter.

“It was especially frustrating when my family needed me. I could not share in their sorrow. We could not give each other support,” Houben wrote during the interview at the ‘t Weyerke institute in eastern Belgium.

“Just imagine. You hear, see, feel and think but no one can see that. You undergo things. You cannot participate in life.”

Arthur Caplan, a bioethics professor at the University of Pennsylvania, said he is skeptical of Houben’s ability to communicate after seeing video of his hand being moved along the keyboard.

“That’s called ‘facilitated communication,’” Caplan said. “That is ouija board stuff. It’s been discredited time and time again. When people look at it, it’s usually the person doing the pointing who’s doing the messages, not the person they claim they are helping.”

Caplan also said the statements Houben allegedly made with the computer seem unnatural for someone with such a profound injury and an inability to communicate for decades.

Asked how he felt when his consciousness was discovered, Houben responded through the aide that: “I especially felt relief. Finally be able to show that I was indeed there.”

“Just like with a baby, it happens with a lot of stumbling,” he wrote.

The doctor who discovered that Houben had been wrongly diagnosed said that he is re-examining dozens of other cases.

Dr. Steven Laureys said he has discovered some degree of consciousness using state-of-the-art equipment in other patients but won’t say how many. He looks at about 50 cases from around the world a year but none are as extreme as that of Rom Houben, who was fully conscious inside a paralyzed body. Many center on the fine distinction between a vegetative state and minimal consciousness.

He said Tuesday that: “It is very difficult to tell the difference.”

His studies showed that some 40 percent of patients with consciousness disorders are wrongly given a diagnosis of a vegetative state.

“It is clearly unacceptable. It is four times out of ten that they think the patient is in a vegetative state but in reality he is minimally conscious,” Laureys said.

Patients from Europe and around the world brought to his center in Liege for a second opinion go through and PET scans, MRI’s and a battery of other tests during a weeklong reassessment.

“Sometimes patients fly in and there is all this hope. But after the tests we have to confirm they are the opposite case from Rom and that there is no error,” Laureys said. “But that too helps the family accept reality.”

In Belgium alone there are some 350 patients diagnosed as in a vegetative state, he said.