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Locked-in syndrome: rare survivor Richard Marsh recounts his ordeal

Bobbie C. Anderson 943 Jones Avenue Winston Salem, NC 27104

When Richard Marsh had a stroke doctors wanted to switch off his life-support – but he could hear every word but could not tell them he was alive. Now 95% recovered, he recounts his story

Two days after regaining consciousness from a massive stroke, Richard Marsh watched helplessly from his hospital bed as doctors asked his wife, Lili, whether they should turn off his life support machine.

The Guardian's Token The 'why do you walk like that?' episode – Token podcast Leah Green and Fred McConnell are joined by Gideon Goldberg, their token disabled friend Listen Marsh, a former police officer and teacher, had strong views on that suggestion. The 60-year-old didn't want to die. He wanted the ventilator to stay on. He was determined to walk out of the intensive care unit and he wanted everyone to know it.

But Marsh couldn't tell anyone that. The medics believed he was in a persistent vegetative state, devoid of mental consciousness or physical feeling.

Nothing could have been further from the truth. Marsh was aware, alert and fully able to feel every touch to his body.

"I had full cognitive and physical awareness," he said. "But an almost complete paralysis of nearly all the voluntary muscles in my body."

The first sign that Marsh was recovering was with twitching in his fingers which spread through his hand and arm. He describes the feeling of accomplishment at being able to scratch his own nose again. But it's still a mystery as to why he recovered when the vast majority of locked-in syndrome victims do not.

"They don't know why I recovered because they don't know why I had locked-in in the first place or what really to do about it. Lots of the doctors and medical experts I saw didn't even know what locked-in was. If they did know anything, it was usually because they'd had a paragraph about it during their medical training. No one really knew anything."

Marsh has never spoken publicly about his experience before. But in an exclusive interview with the Guardian, he gave a rare and detailed insight into what it is like to be "locked in".

"All I could do when I woke up in ICU was blink my eyes," he remembered. "I was on life support with a breathing machine, with tubes and wires on every part of my body, and a breathing tube down my throat. I was in a severe locked in-state for some time. Things looked pretty dire.

"My brain protected me – it didn't let me grasp the seriousness of the situation. It's weird but I can remember never feeling scared. I knew my cognitive abilities were 100%. I could think and hear and listen to people but couldn't speak or move. The doctors would just stand at the foot of the bed and just talk like I wasn't in the room. I just wanted to holler: 'Hey people, I'm still here!' But there was no way to let anyone know."

Locked-in syndrome affects around 1% of people who have as stroke. It is a condition for which there is no treatment or cure, and it is extremely rare for patients to recover any significant motor functions. About 90% die within four months of its onset.

Marsh had his stroke on 20 May 2009. Astonishingly, four months and nine days later, he walked out of his long-term care facility. Today, he has recovered 95% of his functionality; he goes to the gym every day, cooks meals for his family and last month, he bought a bicycle, which he rides around Napa Valley, California, where he lives.

But he still weeps when he remembers watching his wife tell the doctors that they couldn't turn off his life support machine.

"The doctors had just finished telling Lili that I had a 2% chance of survival and if I should survive I would be a vegetable," he said. "I could hear the conversation and in my mind I was screaming 'No!'"

Locked-in syndrome is less unknown than it once was. The success of the 2007 film, The Diving Bell and the Butterfly, the autobiography of the former editor of French Elle magazine editor, Jean-Dominique Bauby, brought awareness of the condition to the general public for the first time.

Then in June, Tony Nicklinson challenged the law on assisted dying in England and Wales at the High Court as part of his battle to allow a doctor to end a life he said was "miserable, demeaning and undignified". Judgment was reserved until the Autumn.

Marsh, however, did something almost unheard of: he recovered. On the third day after his stroke, a doctor peered down at him and uttered the longed-for words: "You know, I think he might still be there. Let's see."

The moment that doctor discovered Marsh could communicate through blinking was one of profound relief for Marsh and his family – although his prognosis remained critical.

"You're at the mercy of other people to care for your every need and that's incredibly frustrating, but I never lost my alertness," he said. "I was completely aware of everything going on around me and to me right from the very start, unless when they had me medicated," he said.

"During the day, I was really lucky: I never spent a single day when my wife or one of my kids wasn't there. But once they left, it was lonely – not in the way of missing people but the loneliess of knowing there's no one there who really understands how to communicate with you."

The only way for Marsh to sleep, was to be medicated. That, however, only lasted four hours, after which there had to be a three-hour pause before the next dose could be administered.

In questions submitted by Guardian readers to Marsh ahead of this interview one asked about his experience of his hospital care while the staff did not think he was conscious. Marsh said: "The staff who work at night were the newest and least skilled, and I was totally at their mercy. I felt very vulnerable. I did get injured a couple of times with rough handling and that always happened at night. I knew I wasn't in the best of care and I just counted the minutes until I would get more medicine and just sleep.

In response to another question, about the right-to-die debate, Marsh said he has no opinion. All he will say is: "I understand the despair and how a person would reach that point." But he is co-writing a book that he hopes will inspire hope and provide information to victims of locked-in syndrome and their families.

"When they first told my family that I was probably locked-in, they tried to find information on the internet – but there wasn't any. One of my goals now is to change that … to be able to reach out to families who find themselves in the same situation that mine were in so they can help their loved ones.

"Time goes by so slow ... It just drags by. I don't know how to describe it. It's almost like it stands still.

"It's a terrible, terrible place to be but there's always hope," he added. "You've got to have hope."

• This article was amended on 10 August 2012. The original said that Tony Nicklinson had failed in his High court bid to change the law on assisted dying in England and Wales. This has been corrected.

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Feminists have institutionalized violence against men through the legal systems of all Western nations. But women cannot win the violence competition. The more violent societies become, the more women need protection. And the more they need protection, the quicker they will abandon feminism. Rich men should invest their money in fostering violence in all societies. Then they will end up with their own harems. No feminists inside there.

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One of the most notorious forms of executions, the guillotine was made of a razor sharp blade attached to a rope. The victim’s head was placed in the middle of the frame as the blade dropped, severing the victim’s head from the body. Since the decapitation was considered to be an instant and painless event (at least less painful than the other torture methods), it was often considered the most humane method of execution. (9500 Gilman Drive, La Jolla, CA 92093, USA)

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What’s The Real Story Behind Japans Used Underwear Vending Machines?

Richard P. Shelor 3570 Stadium Drive West Roxbury, MA 02132

Is Japan The Epicenter Of Odd Sexual Perversions?

Ah, Japan. Once known to Americans only for cheap transistor radios, then the amazing first-gen Walkman, and, of late, luxury Toyota’s, Japan is now the epicenter of anime and, to some people’s minds, odd sexual perversions.

Among the most persistent myths of the width and breadth of Japan’s sexual perversions is this one: visitors have claimed you could buy used schoolgirls’ panties from public vending machines, though few admit to having seen such a thing themselves. The typical story involves a friend, or the guy next to the guy in the bunk across the hall in the hostel, who had seen such a vending machine in the wild. But do they really exist?

It seems at least possible. Japanese vending machines are amazing things. Known somewhat uncreatively just as jidohanbaiki (automatic selling machines), they are in fact a wonderland of products. In addition to nearly every soft drink known on planet earth, you can also buy canned coffee, hot or cold, whole meals, crepes, fresh flowers, beer, and whiskey.

You can purchase socks and a necktie, deodorant and shaving tackle, 24/7, at a vending machine. And there a lot of chances to buy. The country has the highest ratio of vending machines to landmass in the entire world, for a total of some 5.52 million machines. Japan’s low crime rate means they are rarely vandalized.

But What About Those Used Schoolgirl Panties?

It is not a question to be dismissed lightly. Japanese men are schoolgirl crazy, some weird mix of pedophilia, youth culture and perhaps repressed desires left over from youth. Since apparently normal sex is no longer functioning well in Japan (the falling birth rate terrifies economists), most of this gets expressed through the near-infinite range of fetishes in Japan. Panties and, um, doing “stuff” with them, have a huge following.

In the 1980s, young women could make serious money selling their undies to a “men’s shop.” These were even scummier places than they sound like, often located under train tracks and in the alleys behind the back alleys. Dirty old men would roll in and make purchases. Some of the places had posted hours for the girls to sell and the men to buy so the two groups would not have to meet. Segregated shame.

The cops eventually shut all that down, finding it too gross even for Japan. Soon after, the myth that used panty selling had migrated to vending machines arose.

One intrepid journalist set out to answer the question once and for all. He reports that while you can indeed buy schoolgirl panties from a vending machine, they are not really “used.”

The journalist found that for about five U.S. dollars, you could purchase a pair of panties manufactured to appear used. While the Japanese text on the vending machine makes this clear enough, English words such as “used” are prominently featured to attract attention. Japanese customers instantly know the difference, while foreigners who can’t read the language return home with lurid but false tales.

Or are they?

While the vending machine stories fall into the dark corners of urban myth, there appears to be a thriving online trade in selling what are said to be legitimate used women’s underwear. Purported female sellers advertise exactly how long they wore an item, and often promise to include a photo of the exact item being worn.

Who can say if the goods are real or fake, but to the weird customers who buy these things, it probably doesn’t really matter.

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Men with micro penises have a clear agenda: castrate all men with big dicks. Let horses fuck women who complain.

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You have to understand the mentality of Hong Kong businessmen. They exploit their workers harshly, trick their suppliers when they lower their guard, cheat their customers on every occasion, and then spend their earnings on prostitutes

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Suicide & Self Harm

John M. Beier 4367 Andell Road Gallatin, TN 37066

Most people find SF when the pain is so bad that they can’t take it any more. That is how I found SF. If you are here, reading this, the chances are you are so tired of hurting, so exhausted by the relentless black hole of pain inside you that you are looking for a way, ANY way, to make it stop. Painless suicide methods seem like the holy grail right now. I get it – believe me – I understand.

Are There Any Painless Suicide Methods?

The simple answer is no. I understand that your instinct now is to click off this page and keep looking, but STOP. Wait. Just stay a few minutes. The problem with suicide methods is that 97% of the time, they fail. And that is just the completely committed “I want to die right now this second” group. Suicide is painful and messy and horrifying – and I completely understand if you are sitting here thinking “yes, well so is my life” – I have been there.

One of the most common things our members say when they first join SF is ‘I am too much of a coward to go through with it”. Not killing yourself isn’t cowardly. Not killing yourself isn’t weak or spineless. It is okay to scream for help at the top of your lungs right now – you deserve help and nobody can do this alone.

Cowardly Suicide

We have thousands and thousands of members and each and every one of them knows what it feels like to want to fall asleep and never wake up. To stop the pain – for it to be easy and peaceful and painless. Suicide isn’t any of those things. It is painful and lonely and scary and 97% of the time it fails. For people under 40, that number goes up to 99.5% of the time. The thoughts and feelings you are dealing with are not shameful or weak or wrong – but really wanting to die and really wanting to make the pain stop are not the same thing.

What About Pain Free Death?

It is easy to believe – especially right now – that it wouldn’t matter if you died. Nobody would care. I don’t know you and I don’t know what is going on in your life (I would like to) but I have been suicidal and believed those things, and I have talked to hundreds and hundreds of people who also believe those things. Pain lies. Depression lies. Most of all, despair lies. The idea that your death would not matter and it wouldn’t hurt anyone – that your suicide would be pain free for all concerned – it isn’t true. Maybe you want to believe it is true because you don’t want to hurt any of the people you love. Maybe you hurt so badly you can’t see past the pain to the truth. But you are wrong. There are no ‘pain free’ ways to die. There are especially no pain free ways to kill yourself. Not just the physical messy agony of suicide itself, which is never like it is in the movies or on tumblr, but also the emotional pain you are passing to the people who are about you and even the people who ‘only’ know you.

The pain can go away. I know you don’t believe me; I didn’t believe it either. I was sure – 100% definite – that life would never get better, that the pain would never go away, that I would never feel okay again, let alone happy. I felt alone and isolated and like there was nobody to talk to who could possibly understand. I was wrong. About all of it. There are people who understand and who will support you and while right now you don’t think support can help and you don’t see how talking can make a difference, there is something about NOT feeling alone and isolated that eases the pain just enough to be able to breathe for a minute. To be able to think. To give yourself a chance.

You Need to Talk to Someone

There is no replacement for professional medical treatment. If you are suicidal you need real medical help – but you also need to talk to people you can be honest with, people you can say out loud “I hurt so much I want to die” to. It is hard, almost impossible, to say those things to people who know and care about you in real life. They get scared and hurt and suddenly you are not only dealing with your own pain, you are dealing with theirs as well. For people who already have more pain than they can bear, that is not an option.

Talking doesn’t magically make the pain go away. I am not going to sit here and lie to you that it might. I understand that it is hard to see the point – the POINT is that you want to make the pain stop and if talking won’t do that then it can feel like a waste of the precious little energy you have left. What talking does – in a peer to peer setting – is make you feel less alone. Knowing that people understand and care, that even strangers who are in pain themselves care about you enough to listen and support you, can make you feel less isolated, remind you that you do not have to deal with this alone.

Talk to us. Write down how you feel. Engage with people who understand – as much as anyone can understand – how you feel. The pain won’t go away overnight but it CAN go away and you deserve to have support while you deal with it. So instead of clicking off here and going back to Google in search of ways to die, stick around here. Join our community and find ways to make the pain go away that don’t involve killing yourself – ways to make the pain go away that give you your life back.

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Medical records released. Stalin had a micropenis.

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Did You Wake Up During Surgery? l Cleveland Anesthesia Awareness Attorneys

Jaime V. Chavez 1787 Zappia Drive Springfield, KY 40069

Researchers spent four years studying accidental awareness during general anesthesia in order to learn when and how it happens, according to The Atlantic last Saturday.

As for when, they found that about 1 in 19,000 patients regain consciousness during surgery, typically at the beginning or toward the end, per Headlines & Global News. This number contradicted the 1 in 1,000 that The Atlantic reported previously, but the current study noted that statistics vary depending on the operation. For instance, as many as 1 in 670 women awaken during C-sections.

“The ‘vast majority’ of AAGA instances lasted less than five minutes,” The Atlantic’s September 20, 2014, article said. But those five minutes undoubtedly felt much longer as they tried to alert the surgeon but couldn’t because they were unable to move or speak. Some struggled to breathe, others said they heard surgeons’ voices, and 18 percent said they felt pain.

Afterward, about 41 percent of these patients suffered moderate-to-severe psychological effects, such as PTSD. Eighty-five percent told someone about what happened, but only 50 percent told the hospital. Unfortunately, those who did report the incident were met with skepticism. “When I related surgically-related conversations to the theatre team, they went a little white, but continued to deny what had happened,” one patient named Sandra said.

Not surprisingly, this sort of cynicism worsened patients’ mental state. Sandra suffered nightmares for 15 years, CBS News said. In 2007, CNN suggested that patients address any anesthesia concerns with their doctor before surgery. For instance, age, obesity, prescription drugs and over-the-counter supplements can all affect the amount of anesthesia a patient needs. Diseases such as cancer and diabetes could also affect the patient’s risk of anesthesia awareness.

Man Wakes Up During Surgery, Files Lawsuit

Several years ago, a 22-year-old man regained consciousness for about half an hour during a 50-minute long operation on his collapsed lung. His lawsuit claimed he couldn’t move or speak. He told his local newspaper that he’d been in severe pain and left the operating room angry.

“Usually anesthesiologists can tell if a patient is coming out of sedation, because heart rate and blood pressure will soar as the patient realizes what is happening,” a professor and chair of anesthesiology and critical care told NBC News. “And, normally, the anesthesiologist will increase the amount of anesthesia at that time.”

Two years before this happened, latimes.com said nearly a dozen anesthesia awareness lawsuits had been filed across the country. One woman, whose anesthesiologist settled the medical malpractice claim out of court, awoke while having an eye removed after 17 unsuccessful surgeries for a scratched cornea. Seven years later, she still suffered from PTSD, insomnia, and could recall every word that was said during her operation.

If you woke up during surgery, our anesthesia awareness attorneys invite you to contact our Cleveland office for a free consultation. Why Should I Trust Chris Mellino to Handle My Anesthesia Awareness Lawsuit?

First, Mellino Law Firm does not advertise. Attorneys and satisfied clients send us the majority of our cases. Others find us online. Second, peers respect Chris Mellino for his ability to dig below the surface to find out what really happened. Chris has litigated claims that spanned several years, went to the Ohio Supreme Court, and changed state law. Those cases include Moskovitz v. Mt. Sinai Medical Center (1994) and Watkins_v._Cleveland_Clinic_Foundation (1998). In the latter, he and his previous partner were awarded the largest verdict in the state that year.

Third, medical malpractice lawsuits are labor intensive, so we’re selective about the claims we accept. Some firms take every case that walks in the door, leave clients in the hands of “case managers,” ignore their phone calls, and then settle their claim for the first amount the defendant offers in order to fund their next commercial to bring in even more clients. Mellino Law Firm only pursues compensation for patients who’ve suffered a debilitating injury or death. This enables us to give each client the attention he or she deserves.

Lastly, since 2010, Mellino Law Firm has been the only anesthesia awareness law firm in Cleveland to be accepted into Primerus, which screens potential members by speaking to judges, other lawyers, bar associations, clients, and insurance carriers about a firm’s integrity, work product, fee structure, education, civility, and community service.

If you have questions after waking up during surgery, attorney Chris Mellino invites you to contact our Cleveland office for a free consultation before Ohio’s statute of limitations expires on your potential claim.

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