Celebrating Coma Day: 5 Explorations of Covert Awareness

Miracle Girl: Celebrating Coma Day: 5 Explorations of Covert Awareness

Celebrating Coma Day -- the anniversary of my awakening -- by exploring my journey and the researchers who allow the covertly aware to speak for themselves. What better way to mark my rebirthday than by cheering the heroes of covert awareness?

Tennis Study: Revealing Active Minds Adrift in Inactivated Bodies

Miracle Girl: Tennis Study: Revealing Active Minds Adrift in Inactivated Bodies

A seemingly vegetative patient participated in his own care using the tennis study technique. But thousand of covertly aware patients languish...for now. 

Scott Routley's heroic efforts reach out from the gray zone of consciousness will help countless others. 

Juan Torres: Another Member of the ‘Miraculous’ Coma Recovery Club

Miracle Girl: Juan Torres: Another Member of the ‘Miraculous’ Coma Recovery Club

Is God handing out miraculous coma cures like candy?Juan Torres's recovery was more remarkable than mine. Doctors gave up on another now-recovered man.

But how many others have their plugs pulled?

Coma Chameleon: The True Drama of Covert Awareness

Miracle Girl: Coma Chameleon: The True Drama of Covert Awareness

I guessed that the play "Plasticity" might be about a similar coma experience to mine. But the playwrights missed the true drama of covert awareness. The comparison between their fictional depiction of covert awareness with my own coma experience suggests that truth is indeed stranger than fiction.

Tennis Anyone?--Communicating with the Vegetative

Miracle Girl: Tennis Anyone?--Communicating with the Vegetative

While the Owen Lab is still in the process of making covert cognition detection widely available, they have already produced tangible benefits for a few seemingly vegetative patients...and their families.

In the case of Jeff Tremblay, the results have been quite moving.

"Hello, I'm in Here!"--Giving Voice to the Voiceless

Miracle Girl: "Hello, I'm in Here!"--Giving Voice to the Voiceless

I was cold; Kate Bainbridge was thirsty. Our discomfort was ignored because our caregivers though we were vegetables, unable to feel pain. That may soon end if the Owen Lab's covert awareness detection research continues to pay off.

Not only would covert cognition be less covert if they succeed, patients who will never recover as well as Kate and I have may someday have a say in their own treatment.

The view from the other side of the bed

When I wrote my Skeptical Inquirer article "Covert Cognition: My So-Called Near-Death Experience," I was hoping that my experience and my research into covert awareness would help inform the public about the one in five people with consciousness disorders who have covert cognition. But it didn't occur to me (but should've) that my article would also affect the family members who have already faced that unimaginably painful position...from the other side of the bed.

After Skeptical Inquirer shared my VICE Post Mortem column interview on Facebook, which linked to my article, one woman thought the article was fascinating, but also found it “very painful and heartbreaking to read.” That's because she was forced into a situation no one would ever want to be in. Her father was in a coma and he had a do not resuscitate order. She sadly, and obviously extremely reluctantly, gave the order to pull the plug.

I gave her my sympathy and told her that if he had a DNR, then she did what he wanted. Few ever sign a DNR, and those that do usually have a good reason for it. But ever since she was forced into this wrenching decision, she's probably had pangs of doubt. And then she reads my article explaining why people like her father might still be "in there."

In answer to someone who posted that it sounds frightening to be trapped in a seemingly endless dream/nightmare, I responded that it wasn't really that scary. But another Facebook member, who is living through every parent’s nightmare, responded, “I try not to think how frightening it would be. My son has been in a coma since he was 14. He's now 31.” And in a second post, he added, “I hope it's just blank.”

I said, “I'm so sorry to hear this. My heart is with you.” But, really, there’s nothing anyone can say to ease his anguish. I certainly hope I did nothing to deepen it. I'm afraid the answer is that I did, and it makes me sad. Replying to another poster, he said, "One person's comatose recollection does NOT a true story make." He has good reasons to wish my story weren't true, and I hope for him that his son is among the four out of five patients without covert awareness.

It’s likely that many more who have faced these unimaginably painful situations read my article in SI and the VICE interview. Do I regret publishing it? No, because I think my greater obligation is to those voiceless patients with covert cognition. How many are having their plugs pulled not because they have a DNR, but because their doctors say they're hopeless? Kate Bainbridge and others who were in similar situations have spoken of the same concerns. As a writer, I'm in a unique position to spread knowledge of covert awareness to the general public. Perhaps in the future, my words will give ammunition to the arguments of the family members of the covertly aware when doctors pooh-pooh their observations, as mine did.

The daughter who faced that horrific choice with her father noted the advances in covert cognition research Dr. Adrian Owen I mentioned in my article. I added that he’s made considerable progress in developing techniques to detect covert awareness in community hospitals. In the future, people like her may no longer be forced to guess about cognition of their loved ones. 

So, would I do anything different? Yes, next time I will add a sympathetic paragraph about the countless families facing that inadequate testing and incomplete knowledge.

My heart goes out to them all.

Brain dead arguments

It was inevitable that as my story became known outside the skeptical world, some people would feel defensive about my non-spiritual near-death experience and my theories about NDEs. It happened after the Washington post wrote about my Skeptical Inquirer article "Covert Cognition: My So-Called Near-Death Experience." And after Simon Davis interviewed me for his Post Mortem column, as well. To some true believers, books like "Proof of Heaven" reaffirm their faith in their eternal reward. Yeah, life sucks, but in the end I'll get to go to the Club Med in the sky. A recent study shows that thinking about atheists increase thoughts of death, even in atheists, which Simon Davis has written about incisively.

Indeed, it's not surprising that a few atheists who have seen heaven in their NDEs have become believers. Most atheists grew up religious; I was raised an agnostic. As I put it to Simon Davis, angels and heaven were not in my mental landscape. There's a reason that the aliens people tend to see in their "encounters" look a lot like the media depictions...and it has nothing to do with spindly little green men buzzing isolated highways.

I have resisted the urge to reply to the commentators on the column. While the epithet Nazi has yet to be thrown, variations of retard has been deployed with regularity. However, I will respond in my own soapbox--this blog. First, Eben Alexander was not brain dead when he had his NDE. This is what Oliver Sacks--that great humanist and polymath whom the world sadly lost a few days ago--had to say about Alexander's experience.

He had a nasty bacterial meningitis. He was in a coma for several days. But when he came to, he described an enormously complex so-called near-death experience. These experiences are often rather stereotyped in quality. People may feel they’re in a dark corridor and moving towards some bright light. Feelings of bliss envelop them as they are drawn towards the light. They sense, in a way, that the light is the boundary between life and death. And they would then come back or “float back.” In Musicophilia, I described such a sequence with a subject, another surgeon as it happened, who had been struck by lightning.

And he had this sort of blissful moment and then he said, “Slam! I was back.” He was back because someone was doing CPR on his heart and his heart started beating again twenty or thirty seconds afterwards. So, his whole cosmic journey only occupied a matter of seconds. Dr. Alexander feels that his cortex was out of action while he was having his visions and therefore it must have been direct supernatural intervention. I think such a claim can’t be sustained and indeed, a few seconds of altered consciousness as one emerges from coma would be enough to give him such a state.

You don't recover from brain death. After brain death, your brain begins to liquify. You know, kind of like watching a marathon of Here Comes Honey Boo Boo. You don't come back from brain death...or Honey Boo Boo.

Here's Michael Shermer's take: Why Near-Death Experience Isn't Proof of Heaven. I wish the commentators had been able to read my Skeptical Inquirer article [it wasn't posted until today]. It's not yet available online, though it should be fairly soon, Simon decided to focus, understably considering his readership, on my NDE, but I think the covert cognition I experienced is a crucial piece of the puzzle. Eben Alexander's brain wasn't off, it was on dimmer. Covert cognition means that while doctors can't detect signs of awareness, the brain is still active on some level. That's what I experienced during my coma, and it's the reason why things that were going around me leaked into my coma-dream, despite my unresponsive state.

Kate Bainbridge, also known as Cambridge Kate, is a famous example of the phenomenon. She was the first patient Dr. Adrian Owen tested for signs of covert cognition. Luckily for her, Dr. Owen was able to see that she was, as Kate put it, "still in there," while showing her pictures of her loved ones during a PET scan. His discovery set him on a new career path that I hope will one day help doctors detect awareness in the (as many as) one in five consciousness disorder patients with covert cognition. Meanwhile, Kate received therapy and eventually woke up. Tragically, though she also exhibits no signs of cognitive dysfunction, she remains severely handicapped. There for the grace of the God I don't believe in go I.

I will have to get into the arguments about whether I had an NDE in my next blog or this one will start feeling like it's lasting as long as my coma. But here's a preview: Yes, it was a dream, as are all NDEs according to the REM intrusion theory formulated by Kevin Nelson. But there's more to it than that.To be continued...

Donating my brain to science while I'm still alive

Dr. Adrian Owen, wearing an EEG cap, probably much like the one I wore when an EEG was performed on me during my coma.

While I am an organ donor, I'm quite that dedicated to the cause. I do occasionally use my brain as something more than a counterbalance to my nose, which is still somewhat prominent, despite my nose job. But I will be answering Dr. Adrian Owen's questions about the things I experienced in my my brain while I was covertly aware during my coma. It will be for his upcoming book as he comes to the relevant chapters.

This week, I realized that Dr. Adrian Owen had finally responded to the email I had sent him detailing my coma experience, at his request. It had languished in my Junk folder for a few days until I noticed it. He had been so wrapped up in his book that he hadn't gotten a chance to respond. As as writer, I can completely understand that. Anyway, here's the backstory: I had sent him a tweet when the Skeptical Inquirer article came out because I thought he and the Owen lab would be interested in the article, since it refers to their work extensively. The Owen Lab website does an excellent job of presenting media and journal links. In fact, much of the information in, "Covert Cognition: My So-Called Near-Death Experience," was gleaned from article and media links on their website. When my article is made available in the Skeptical Inquirer archive, I would be surprised if they didn't add that to their library, as well.

I also suspected that Dr. Owen would be curious about my case, since it's rare that patients in my situation recover so fully. And how many of them are also writers who can articulate their experience well? Indeed, I had sent an email when the article was accepted. But for whatever reason, I never received a response, not even in my Junk folder. It's possible that's where my email wound up, as well, amidst the ads for penis enlargement miracles and urgent correspondence regarding unknown benefactors in Kenya.

At any rate, he told me that parts of my experience were similar to other cases he has seen. That's fascinating to know...tell me more! I had also offered to send him a copy of my medical records while I was in the hospital (I have a copy to aid my memoir), and he's asked to see it to help him understand my case better. (I can't wait to hear his insights!) He queried me, as well, about the closest big city to where I live. Los Angeles, I told him. Ever heard of it? I think he inquired because he might ask me to get some tests. Is it too much to hope that it might be a fMRI, like I discussed in the article? I love the idea that I might be contributing something to science! I wanted to grow up to be a scientist, and this is the next best thing.

I'm afraid I may have come off sounding a bit like a fangirl in my response because of his groundbreaking work in a field I now feel passionate about. To me, he is a rock star of covert cognition research. Indeed, Dr. Owen plays guitar, and he used to be a member of a rock band called, You Jump First. Okay, I will, but I did urge him to write a popular science book about covert cognition eventually. To advance the science, you also have to increase knowledge of it for those potentially one-in-five patients with disorders of conscious who have covert cognition. You can't help them if no one even considers that they might be still "in there."

In every interview of Kate Bainbridge I've read, she's commented about how lucky she was that Dr. Owen scanned her and saw those sparks of consciousness as she reacted to pictures of her family. Dr. Owen was fortunate, too, because that discovery set him on his current career path. But luckiest of all are the covertly conscious who will someday be helped by Dr. Owen and his fellow researchers in the growing field of covert cognition research.

Someday, perhaps, the covertly aware won't be shoved into the Junk folder of humanity.

Locked-in hope

Tooling around the Owen Lab's website, I learned that Dr. Adrian Owen and his colleagues at the Brain and Mind Institute have developed a portable device that allows communication with people suffering from complete locked-in syndrome. Here's the NewScientist story: Portable mind-reader gives voice to locked-in people.

I didn't suffer from locked-in syndrome, but I think Kate Bainbridge did at one point. She refers to being aware, yet unable to communicate. I, on the other hand, was only semi-conscious. That's why stimuli from around me only leaked into my coma-dream, as I call my near-death experience.

Still, this is an exciting advance. The Owen Lab is also working on ways to detect covert cognition with EEGs. I received an EEG, though all it could detect was that I wasn't brain dead. You may have surmised this by the fact that I'm writing this. At any rate, I wish them luck in their further endeavors as they seek to help people like Kate Bainbridge and me.

Kate Bainbridge's story

For those who are interested in Kate Bainbridge, either because you recently discovered my recovery blog via my Skeptical Inquirer article or just joining my blog from Blogger, here is a short documentary that tells Kate Bainbridge's story. When I think about all the travails of my recovery from the strokes and six-week coma, I think about what Kate has been through. No matter what, there's always someone who has it worse.

Miracle Girl

Now that my Skeptical Inquirer article, "Covert Cognition: My So-Called Near-Death Experience," has come out, I think it's a good time to address the issue of whether my recovery was a miracle or not.

If you're coming to this blog from the article, you probably come down on the same side of the question as I do.

After I awoke from my coma, I began posting responses to the well wishes of my friends on the dulcimer website, Friends of the Mountain Dulcimer. They had been lending Keith a great deal of kind support when it looked like I would almost certainly die. They continued to support me through my recovery. In one post, I jokingly called myself Miracle Girl because so many people had told me my recovery was a miracle. Many of my dulcimer friends were among them.

Knowing me, my friends undoubtedly knew that my Miracle Girl reference was sarcastic. And I did mention that I didn't believe in miracles. But I don't think they realized how thoroughly my skepticism colors my outlook, and how deeply ironic it was that so many people thought I had experienced an authentic miracle of God. You know, the kind they canonized saints over. I talk much more about this in my essay, "Without a Prayer of a Chance," which is tentatively scheduled for the October/November issue of Free Inquiry.

At any rate, while my recovery was indeed very unlikely--even my own doctors told my loved ones to give up hope--it's perfectly explicable medically, as I detailed in the SI article. Though I've had many nurses tell me my recovery was a miracle--including ones that treated me during the coma--I've never had a doctor tell me that. When doctors say there is only a one percent chance of survival, a few people are lucky enough to be in the one percent. I won the Golden Ticket. I remain amazed by my good fortune, however.

But didn't Kate Bainbridge deserve my special Golden Ticket, too? After all, I also drew the (eventual) Get out of Recovery Free card.Though she's very fortunate to have retained her mental capacities, as I did, she will never get the opportunity walk through beautiful gardens to further her recovery, something I've come to love. I'm sure she would even welcome the drudgery of riding an exercise bike six days a week. Kate cannot speak; I only lost that ability for a matter of months. She lost her fiance when she was still in a vegetative state, while my boyfriend has been my invaluable partner during my recovery. Her "miracle" sadly came with many caveats.

But faith isn't about evidence, and I personally don't have a problem with people having their faith strengthened by my recovery, especially the sincere people of faith who were praying for me. I imagine many atheists wouldn't feel that way. As I say in my most recent essay for the humanist market, "Sympathy for the Devil-Believers," to my believer friends, praying for me was the most meaningful form of support they could offer for me.

For non-believers, my survival holds a different lesson. I've emerged from the coma and my recovery a stronger and better person. I remain someone with many personal flaws, but I'm dealing with them better than I ever have. A big part of that is my severe case of ADHD. But I now realize that my ADHD is only an explanation, not an excuse. I'm exercising regularly and plan to keep it up after my recovery is over. I'm writing far more than I did before the coma. More importantly, I've finally taken charge of my life.

The lesson for non-believers is you can turn your life around, without God and without a brush with death (though that's what it took for me). Hopefully, most people won't require such a terrible slap upside their heads. You believe that you only have one life to live, so live it that way!

Just as my body healed itself, my true miracle came from within.

The self-affirming message reads, "I am strong and beautiful." Hey, I didn't write it--but I am strong, at least. The photo was taken on one of our rehab walks.

The gift of life

Sunday I will celebrate my second birthday since I awoke after a coma from which my doctors thought I would never escape. My mother believes that my nurses were trying to gently nudge her toward pulling the plug eventually when they talked about how poor my quality of life had become. But was I really suffering? Unbeknownst the them, I was living through entertaining adventures in my coma-dream, like watching miniature zoo animals holding a tea party. As I passed this scene, I said, "They must be filming a kids' show," as if that would explain it. Dream logic.

About the same time, a doctor discussed with Keith what they should do when--not if--I started going into cardiac arrest. Yeah, I was that close to death. I know my believer friends think it was a miracle that I survived. To me, it was a miracle of modern medicine. Plus, I was very, very, lucky.

But what about those potentially one in five patients with covert cognition who haven't been so lucky? My mother and Keith weren't about to pull my plug, but I know a lot of people think, "He/she would never want to live this way." If it comes to that, they would make that terrible decision. How many of those unfortunate people are having their own coma-dreams, happy in their fantasy worlds?

Kate Bainbridge, the vegetative-state survivor I talk about in my upcoming (July/August) Skeptical Inquirer article, "Covert Cognition: My So-Called Near-Death Experience," has expressed similar concerns, as have others who were in the same situation.

As much as medical advancements saved my life, there is much that medical science still doesn't know. Indeed, the word about the latest findings about covert cognition hasn't yet gotten out to all the doctors in the field. My neurologist isn't even familiar with the groundbreaking research of Dr. Adrian Owen and his colleagues at the Brain and Mind Institute. He was the one who discovered Kate's covert cognition when he was still at Cambridge University. Thanks to Dr. Owen, Kate received therapy. Though she's severely disabled now, her cognition is fully intact. Like mine is.

I was fortunate enough to have Keith and my mother to read and talk to me, trying to keep my mind engaged. Much of what they said, read, and played for me leaked into my coma-dream. But I didn't receive therapy, physical or otherwise, because my doctors said it would be useless. I believe that my recovery might have been a lot shorter if I had received it.

Still, the doctors saved my life, and of course I'm grateful for that. I've gotten a second chance at life. But how many people have never had that chance because someone close to them thought they were saving their loved one from suffering? It's a wrenching decision for them, obviously. They're only doing it because of their love. But Dr, Owen has been able to communicate with people who were thought to be beyond hope--profoundly brain damaged--just like my doctors thought. Even if they don't wake up like I did, it may be possible to communicate with them. And then they can decide for themselves if they want to keep on living.

Being a writer, I feel an obligation to use my writing skills to educate the public about covert cognition. Maybe through my efforts, some of those one in five people will be celebrating more birthdays of their own.

While I was in the coma, apparently, Keith told me that when I woke up, I could use my writing to help people like me. Unfortunately, that's not one of the things I remember from my coma-dream, but he knew me well enough that it's come true.

Helping to make covert cognition less covert

I was recently informed by Kendrick Frazier, editor of Skeptical Inquirer, that they would like to publish my feature article, "Covert Cognition: My So-Called Near-Death Experience." He sent it to an outside expert, who also liked it, and replied amazingly quickly, as well. I was very pleasantly surprised that the expert had no suggested changes whatsoever. I did exhaustive research for the article, but I'm not a neuroscientist, nor do I play one on TV. Plus, it was the first article I've ever written. The earliest the article could come out would be in the July/August issue, appearing in June. That's a lot earlier than I expected!

This, of course, will help my non-fiction writing career immensely. All my previous publications were fiction. But I hope the publication of the article will also educate the public about covert cognition. Though covert cognition is somewhat controversial because some hide-bound neuroscientists have had trouble accepting the findings, there is a wealth of very solid empirical evidence to back it up. I'm not going to give too much detail about the article, but it's part personal essay about my experiences, part exploration of the implication of covert cognition for near-death experiences (NDEs).

My research helped me to understand what happened to me a great deal. Being a card-carrying skeptic, I didn't understand the dichotomy between what my doctors perceived as my hopelessly damaged brain and my rich mental life during my coma. It was no miracle; I was simply experiencing covert cognition. I also did quite a bit of research about near-death experiences. It's often claimed that the people undergoing them were incapable of imagining their NDEs because they're unconscious. It's also alleged that they couldn't hear the things going on around them. But I did. Even as the doctors were shining lights in my eyes to gauge my level of awareness, I was telling them in my coma-dream to leave me alone so I could get back to sleep.

They told my loved ones to give up hope for my full recovery. That even if I woke I up, I would never regain my full mental faculties. How many people like me are out there? According to researchers, that could be as many as one in five people with consciousness disorders. How many of them are having their plugs pulled even though they're experiencing their own coma-dreams?

Not too long ago, I asked my neurologist if she was familiar with the work of Dr. Adrian Owen and his lab at the Brain and Mind Institute. They're pioneers in the study of covert cognition. She was not. I would like to change that.

The first vegetative patient Dr. Owen studied turned out to be covertly aware. That was fortunate, both for Kate Bainbridge and Dr. Owen, whose career took a new turn after that discovery. Kate received therapy after Dr. Owen's astonishing findings and she recovered. She's severely disabled today, but like me, she retained her mental faculties completely.

I hope the publication of my article will help inform the public about these recent findings and enhance the cause of those one in five patients. Dr. Owen's lab has had some recent success detecting covert cognition with EEGs. I had an EEG. Though it showed I wasn't brain dead--it's a good thing they didn't test me first thing in the morning!--the EEG couldn't show them that I was still aware, I wasn't fully aware, but I was still "in there," as Kate Bainbridge put it.

Somebody needs to speak out for the people in my situation who aren't as fortunate as I was, because they certainly can't speak for themselves.