SfMCR*: After the Awakening

This is the only photo taken of me at All Saints Healthcare. It was snapped on the day of my transfer, five days before my awakening.

I awoke from a dream of man-eating office machinery right out of the Twilight Zone, only to learn that I had actually been re-enacting Sleeping Beauty. I've told the story of the first moments after my awakening before, but the rest of the day was almost as surreal.

A female doctor walked in to evaluate the state of my cognition. Since I couldn't talk, all she could do was give me a multiple choice quiz. Which of these is the current president: Bill Clinton, George W. Bush, or Barack Obama? This was my first inkling that brain damage was still suspected. I shook my head on the first two and nodded on the last. I made a mental note to make sure everyone could tell that I was completely there.

My mom had explained that my doctors had written me off as a basket case. "The nurses hinting that I should let them pull the plug," she added in her typical blunt manner. She also stated that I had been a quadriplegic. Though I could barely lift my arms and legs, I did have a slight amount of movement. This didn't make any sense to me. My spinal cord had obviously not been damaged. How could this be? This statement only added to my perplexity. [She still says this. I think she bases her conclusion on my lack of movement during my coma. As a hyperactive person, I had always fidgeted and moved while awake. Though I was covertly aware during my coma, I wasn't fully awake. If I had been conscious, but paralyzed, I would've been in a lock-in state, not vegetative.] 

Though I was sure I had no signs of brain damage, confusion reigned as I tried to make sense of the mish mash of the details that trickled out about my illness.

Soon, a priest appeared and told me, "God is good," as I've written about before. My mom, who is also an atheist, was trying to be polite when she allowed him to come to my side. I, in turn, acquiesced with a slight nod of my head when he as asked me if he could pray for me. It made me feel extremely uncomfortable. Thankfully, he soon left.

My mother was obviously excited at my awakening, but sometimes she talks so much that details can get buried in the mix. This only added to my confusion. I was already getting an inkling of what my loved ones had gone through, however. My mom told me there had been a constant vigil by my side, a fact which a nurse confirmed. Keith would be coming by after work, my mom informed me. I couldn't wait for him to get there. I knew he would be happy.

When Keith arrived, I could hear the joy and relief in his voice. I only wish I could've seen his expression; I'm extremely nearsighted and I didn't have my contacts or glasses. A vegetable has no need for corrective lenses. Keith vowed to bring my glasses to me the next day. Though I couldn't see fine details, I could make out the breadth of his smile.

He told me that all my friends on Friends of the Mountain Dulcimer were rooting for me, and there was a separate cheering section on Facebook. "I can't wait to tell everyone you're back. Completely back." The relief in his voice was obvious.

Meanwhile, I mugged like a silent movie actor, trying to seem as vibrant and aware as possible. I did my best to display my sense of humor, through exaggerated facial expressions, comically timed looks, and a few mouthed words, which were often misunderstood. I wanted everyone to know that I was still completely me. Given my limited comic palette, I was at a considerable disadvantage in this endeavor. My humor is usually verbal.

As I continued to overemphasize my thereness, I stayed so animated that I quickly became exhausted. Yet I kept it up, anyway. I had to make sure everyone knew my mind was undamaged. Keith clearly couldn't get over the fact that my mind was still clearly intact. He had heard all the same discouraging things from my doctors.

And all the time, I struggled to piece together the picture of what had happened. Had I been in a coma six months or six weeks? [I think the confusion stemmed from my mother rounding up to two months, while Keith referred to it as the more precise six weeks. My mind conflated the two.] Why were objects labeled as belonging to "All Saints," when I had spent my coma in the Kaiser Panorama City hospital? No one thought to inform me (because they already knew) that I had been transferred to a nursing home only five days before my awakening. [As I've referred to repeatedly, it was the very activity involved with that move which sparked my awakening.]

Eventually, Keith had to go home and scarf down a quick dinner, then catch a few hours sleep...as he'd been doing for the previous six weeks.

I felt all but dead, wrung out by my forced activity in my coma-weakened state. But I awoke the next morning. And the next morning. And the following morning as well.




*SfMCR stands for Scenes from My Coma Recovery. This post is part of a continuing series of vignettes from my recovery.

Proof of Heaven or the living dead?

Many NDE true-believers have claimed that the reason I didn't see Heaven was I didn't die. Even cardiac arrest patients who have had NDEs weren't truly dead, just clinically dead. Or, in the words of Miracle Max, they were mostly dead. If they were really most sincerely dead, they wouldn't have lived to tell the tale. But Eben Alexander never actually died, clinically, in the Miracle Max sense, zombified, or in any other definition of the word. Here again is that instructive account from a doctor who was treating Alexander during his bout with meningitis (as quoted in the famous Esquire expose of Eben Alexander).

"And of course he was still in an induced coma," she says. "On ventilator support. They tried to let him wake up and see what he would do, but he was in exactly the same agitated state. Even if they tried to ease up, a little bit even, on the sedation. In fact, for days, every time they would try to wean his sedation—just thrashing, trying to scream, and grabbing at his tube."

Alexander's claim that his brain was basically dead during his coma simply isn't supported by the evidence. My illness and strokes put me into a six-week coma; his coma was induced and he became agitated every time his doctors tried to decrease his sedation. Surely my brain was more incapacitated than his, and it didn't cease functioning. He was mentally altered, to be sure, as I was before I slipped into my coma and every mornings before and since. But whereas my illness caused me to slip into a coma even before my strokes, his coma was induced by his doctors to control him so they could save his life. And, remember, he also claimed that he screamed out while he was intubated. I can attest from personal experience to the impossibility of that claim. 

This pic was taken during my second bout of Legionnaires' disease. Yes, second.

And this is what happens when brain cells die. 

It's not as bad as it looks.

Fortunately, my brain damage was stopped before my "string of pearls" strokes turned into a treasure chest. When brains truly cease functioning their owners do too. This is the National Kidney Association's blunt definition of brain death.

Brain death is a legal definition of death. It is the complete and irreversible cessation (stopping) of all brain function. It means that, as a result of severe trauma or injury to the brain, the body's blood supply to the brain is blocked, and the brain dies. Brain death is death. It is permanent and irreversible.

When I was a small child, my uncle explained to me that Beethoven was deaf when he wrote his later symphonies. But I misheard; I thought he said that old Ludwig was dead when he wrote them. I puzzled over this, trying to understand how that could be. I imagined him dropping dead beside his piano, suddenly coming back to life, playing a few notes, scribbling them down, then dropping dead again...over and over.

Could this be what happened to Eben Alexander? And did he come back in order to blave, which according to Miracle Max means to bluff?

Handing out presents on Santa's trusty...butterfly?

This is my brain on strokes. At least the MRIs finally proved that--despite all evidence to the contrary--I'm not completely brainless.

The MRI images of my brain after my strokes on both sides of my brain are pretty horrifying. But, contrary to what my doctors proclaimed, it didn't signify "profound brain damage." The proof is that I'm writing this now.

On the other hand, Eben Alexander was not even in a natural coma. He was in a medically-induced coma because his meningitis made him so mentally altered that he was lashing out at the doctors trying to save his life. Therefore, the only reason he was unconscious was because of the drugs his doctors gave him. Here are the words of one of the doctors treating him, as quoted in the famous Esquire expose of Eben Alexander.

"And of course he was still in an induced coma," she says. "On ventilator support. They tried to let him wake up and see what he would do, but he was in exactly the same agitated state. Even if they tried to ease up, a little bit even, on the sedation. In fact, for days, every time they would try to wean his sedation—just thrashing, trying to scream, and grabbing at his tube."

The doctor's report clearly shows that Alexander was most certainly not brain-dead. Every time his doctors attempted to remove him from sedation, he became uncontrollable again and they were forced to put him under once more. Here's a quote from Proof of Heaven.

"During my coma my brain wasn't working improperly—it wasn't working at all."

Yet, his brain worked perfectly fine--if manically so--every time his sedation was lifted. My brain, on the other hand, wasn't supposed to be working at all, at least according to my doctors after they viewed my MRIs. This is ironic considering that I think my consciousness was actually restarted by those very MRIs. (The distinctive MRI voice was the first datable element in my coma-dream.) Or, more accurately, it was activity related to the MRIs--especially moving me--that jumpstarted my cognition.

Near-death experience true believers like to cite the fact that Alexander is an neurosurgeon to bolster his literally unbelievable claims. But if he were being a true man of science, he never would've claimed that his brain was actually dead during his experience. His brain was no more dead than Claire Wineland's was when she had her non-spiritual coma-dream. She was in a medically induced coma too. The web is rife with coma-dream experiences told by people who were in drug-induced comas. Eben Alexander's story is simply one of them. It's such a common experience that it's not covert enough to be considered covert cognition. Here's a Livescience article about medically induced comas, which ends with the dreams and hallucinations often experienced by patients: What is a Medically Induced Coma?

My favorite account was from a Disqus member called NoAZPhilsPhan. It was in the same article about Claire Wineland's video What It's Like To Be In A Coma I've referred to repeatedly. People were always telling him that he had an NDE, but he had reasons to doubt it.

I was in a 10 day coma, medically induced the last few days, after I passed away on the OR table during emergency surgery. Many of my organs, like my kidneys shut down. I remember walking down a very, very wide hallway. On each side there were massive doors that opened up to beautiful scenes like valleys, fields with lakes, tropical beaches and the like. I remember hearing someone playing the guitar and singing, over and over again, "Knock, knock, knockin' on Heaven's door". After a little while I realized it was a dear departed friend of mine who was a musician so I said "Bob, is that you?" ( I could not see him only hear him). He said "Yea, it's me buddy, but we don't need you right now why don't you go home." So I turned around and walked back.I had many people say to me that it was an afterlife experience. I'm not so sure of that because all of this happened around Christmas time and during my coma I also helped Santa Claus deliver presents to Norway and England. Oh, by the way... those soda drinking polar bears are real as well.... I met them and we went sledding.

Coincidentally, his coma came around Christmastime. He didn't he ride on the wings of a giant butterfly, as Alexander claims, but perhaps he could've combined the two. Instead of using Santa's trusty sleigh, they could've given Rudolph the night off and hitched a ride on a giant butterfly.

The Diving Bell and the Salmon

I'm currently reading, The Diving Bell and the Butterfly by Jean Dominique Bauby, in part because I'm preparing to write my own memoir. I have to admit that memoirs haven't been one of my favorite genres, though I have read a few. If I knew I was going to have a memoir-bait experience, I would've prepared better.

Like I did when I was a kid choosing subjects for a book report, I've naturally been picking up memoirs on subjects that I would've been interested in anyway. I don't care how popular Eat, Pray, Love was, I'm not reading that spiritual drivel.

At any rate, there's a reason why Mr. Bauby's book was an international bestseller. I'm enjoying it on a literary level, the way fiction has always drawn me into its web. In a recent chapter, he wrote about the way he integrated what was going on around him in the hospital into his own version of a coma-dream. The ICU was transformed into a surreal bar, his IVs a tube from which alcohol poured forth into his mouth.

That anecdote powerfully reminded me of the "Hi-C" being fed into my mouth through a tube in my coma-dream. In fact, the "tube" was actually a citrus-flavored swab being used to clean my teeth. I couldn't understand why Keith kept telling me not to bite down. How else was I supposed to suck on the tube? Mr. Bauby also likened his recurring dream segments to a soap opera, just as I have. When you're in a coma, you have a lot of time to kill.

Recently, Joella posted a video on my Facebook timeline from a bubbly and intelligent 18 year old with cystic fibrosis named Claire Wineland. It's titled, "What It's Like To Be In A Coma." Actually, that isn't quite correct. It's really about what it was like to be in her coma, which was medically induced after a surgical procedure went awry. But her experience does share a number of elements with mine, as well as Mr. Bauby's and other accounts by people who have posted their coma experiences online. Her brain also transformed what was going on around her into dream-logic versions in her coma-dream. Like me, she interacted with people in the real world, engaging in conversations only she could hear. She dreamed of Alaska because her doctors packed her with ice, like a soda in a cooler, to lower her temperature. My doctors did the same to me. They left me uncovered in a frigid room, as well, since they thought I was incapable of feeling chilled. This is why not one but two recurring threads of my coma-dream involved ice cream.

When you read medical information about comas, it always talks about the coma victims losing awareness of their surroundings. Yet, brain trauma organizations advise the loved ones of those with disorders of consciousness to talk to the patients because of the many accounts from recovered survivors who have reported that they heard what was being spoken to them. What gives?

Well, in science you can't credit anecdotal evidence.The brain trauma organizations are giving advice based on experience, but it's still not empirical, scientifically confirmed, evidence. Furthermore, the official sources are citing what has always been accepted knowledge and practice. Doctors on the community hospital frontlines play the odds, which state that people in my situation are most often basket cases. Just as my dermatomyositis was pooh-poohed for some time because it was a rare zebra of a disease, my chances of recovery from the strokes and coma were discounted when they saw all those white spots on my MRI and I remained unable to respond. Doctors don't want to give false hope to loved ones, so in some instances, they instead spread false despair.

Ah, but there is plenty of empirical evidence of covert cognition, you say. Isn't that what you've been going on about since the beginning of your recovery blog? What about the scores of peer-reviewed studies published by Dr. Adrian Owen and the Owen lab?

Though the Owen lab is far from alone in the growing field of covert cognition research, these findings have yet to penetrate to the level of the average neurological practitioner. Indeed, my neurologist hadn't even heard of their work. I'm also afraid that the medical establishment hasn't fully absorbed the finding of the Owen lab, Dr. Owen's earlier work at Cambridge University, and Steven Laureys' Coma Science Group in Belgium. The finding fall too far outside of long-accepted knowledge and practice.

Think about how long it took before H. Pylori was accepted as the cause of ulcers. It was discovered by Australian doctors in 1982 and later confirmed by British researchers. Perhaps, when it comes to covert cognition research, American doctors are still scratching their head over those crazy finding by British, Canadian, and Belgian ferners. Vegetables communicating by playing tennis in their heads? Ridiculous! Dead salmon placed in an fMRI machine show activity, too [that's a real argument I've read based on a test anomaly]. But could even live salmon repeatedly and correctly answer biographical questions, or anything at all?

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.