Deathlessly speechless

If I could've said something, it would've been, "Oy!"

In his book The God Impulse, this is what Kevin Nelson had to say about those who believe "experiencers" like Eben Alexander were actually brain-dead during their NDEs:

The brain doesn't die in near-death. Being near-death is very different from returning from death...the brain is nowhere near physically dead during near-death experiences. It is alive and conscious.

Dr. Kevin Nelson is a professor of neurology at the University of Kentucky, and the researcher who conducted the seminal REM intrusion study of near-death experiences referred to in my Skeptical Inquirer article Covert Cognition: My So-Called Near-Death Experience. NDE true believers like to cite the fact that Eben Alexander is himself neurologist. But he only decided that what he experienced during his coma--which was in fact medically induced, unlike mine--was a near-death experience well after the fact. As I did, as well.

That's because we're interpreting our experiences though a prism of our own preconceptions. I think both sides can agree on this point...at least regarding the other side of the issue. The main arguments against my story from NDEers generally fall along the lines of A) It wasn't an NDE because you didn't die. B) You didn't have a "real" life review. [I'll delve further into objection A and the others in future blogs.]

Many of the arguments presuppose that the brains of those having the NDEs were dead at the time. That is impossible, as Kevin Nelson describes in more detail than I can quote. Alexander must know this, as well. He has chosen to disregard the mountains of scientific evidence that contradict his personal theory, which is also in direct opposition to the reports of a doctor who treated him. This is a quote from the excellent Esquire expose of Eben Alexander, written by Luke Dittrich]:

I ask Potter [Dr. Laura Potter, the first doctor to see Alexander in the ER] whether the manic, agitated state that Alexander exhibited whenever they weaned him off his anesthetics during his first days of coma would meet her definition of conscious.

"Yes," she says. "Conscious but delirious." 

In Proof of Heaven, Alexander purports to have yelled out, in a crystal-clear voice... 

"God, help me!"

 Later in the Esquire piece...

Potter has no recollection of this incident, or of that shouted plea. What she does remember is that she had intubated Alexander more than an hour prior to his departure from the emergency room, snaking a plastic tube down his throat, through his vocal cords, and into his trachea. Could she imagine her intubated patient being able to speak at all, let alone in a crystal-clear way?

 "No," she says.

I can tell you from personal experience that after I had my second bout of Legionnaires' disease, I could say nothing while intubated. All who knew me were no doubt relieved.

Keith fanning me with the white board with which I as forced to communicate.

Now, I’ll confess that, as a skeptic, I've done extensive research on NDEs from a scientific perspective, but until now I haven't been exposed to the vehemence of NDEers. We will never convince each other, of course, and I certainly have no wish to try. I can only present the facts and let the readers decide.

And here is one final quote from the Esquire piece:

His survival is a miracle, he [Alexander] says. His doctors told him that he is alive when he should be dead, and he believes intensely that he is alive for a reason, to spread the word about the love awaiting us all in heaven.

I’m alive when I should be dead, too. I consider my recovery to have been remarkable, and certainly unlikely, but not miraculous. And my mission is to spread the word of science and reason.

A watershed moment

This isn't my MRI, but it demonstrates the"string of pearls" pattern of watershed area stroke damage in my brain.

According to Wikipedia, a common classification system for strokes is called TOAST (Trial of Org 10172 in Acute Stroke Treatment). Toast, I was fortunately not, thanks to the watershed area stroke damage I suffered. If you absolutely have to have multiple strokes on both sides of your brain--and I would recommend against it--this is the kind you want.

Here is how I described watershed stroke damage in my Skeptical Inquirer article:

My neurologist told me that the reasons I've recovered so well are I was younger than the average stroke victim, and most of my brain damage was in the watershed areas. Watershed areas lie between two major arteries. By the time blood reaches these sections, there’s less oxygen in it. It’s a bit like a wetland fed by two trickling tributaries. Together, they provide just enough water, but when the flow diminishes, the land between the tributaries dries up. As she explained, watershed areas don’t generally control vital functions. They die more quickly than more important regions, but also spring back faster after damage has occurred. Ain’t evolution grand?

But why is this natural selection in action? I'm glad you asked. What would aid your survival if you experienced a sudden loss of blood or blood pressure to your brain--say a sabertooth chomping down on your skull? It looks like you're about to be sabertooth cat chow, but in the nick of time, members of your tribe come to your rescue. You've lost a lot of blood, but you're still alive. So far, you're brain has sacrificed the areas that will cause the least amount of long-term damage. You won't be the same for some time, but you will eventually recover. Fortunately for you, humans instinctively help others who need assistance (especially if they are kin), as indicated by some of the crippled skeletons of early humans and our close cousins, the unfairly stereotyped Neandertals. Now it's only a matter of time before you recover enough to once again be a productive member of the clan.

Substitute sepsis for the sabertooth, strokes for the cranial trauma, and writer for the productive member of society part, and you have what happened to me. 

What evolution gave my survival in general is humanity so intelligent in the aggregate that it could develop medicine and technology advanced enough to maintain my life while my other bodily systems recovered according to their evolved survival mechanisms. An early modern human in my situation would have indeed been toast.

As I mentioned in the article, dialysis and a respirator gave my kidneys and lungs time to begin healing so that they could eventually start working again. Later, the nursing home permitted my body time to recover enough to begin walking somewhat. Still, the evolution of care in our society, namely our healthcare "system," meant that Kaiser handed me my walking papers when I could still barely walk.

Further proof that evolution is not unidirectional.

Knock, knock, knockin' on Heaven's door...with Santa and the Coca-Cola polar bears

Not Heaven, but our view as we headed over the Alps on the way back from Sicily. The clouds eventually cleared and we got some good pics of the mountain peaks.

Today, a friend shared an online ABC article about Claire Wineland on my Facebook timeline. It gave a few specific details that Claire left out of her video, like the fact that she had sepsis (which is what put me in my non-medically induced coma). A neurologist quoted in the story took pains to point out that her coma was medically induced, as if that explained why Claire was able to perceive things around her and incorporate them into her coma-dream. At least that's how it sounded like to me.

While most of the coma-dream accounts I've read online were indeed from people who were also in medically induced comas, I can attest that it is not the necessary precursor. It may well be more common in that group because their comas aren't as deep, but we can't really know, since so many in my situation die without ever being able to tell the tale.

At any rate, I can't help feeling exercised about this subject, so I felt compelled to comment. I also read the rest of the lively discussion, which ran the usual gamut from joking to engaged to idiotic. There were even a few comments about similar coma experiences. One that struck me in particular was from Disqus member NoAZPhilsPhan:

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.

So, another whimsical coma-dream with classic near-death experience elements. Though he did see a dead friend, who told him a version of the usual, "It's not your time," he saw not angels, but pop culture icons. It's not surprising that so many people reject his rational interpretation of his experience, just as they reject my medically based explanation. If what he saw was a figment of his imagination, then maybe all those other NDEs with dead relatives and angels are also fantasies, as well.

As I detailed in my article, "Covert Cognition: My So-Called Near-Death Experience," in the current issue of Skeptical Inquirer, that may be because NDEs are manifestations of REM intrusion. In other words, they're all a kind of coma-dream. According to the REM intrusion theory, formulated by Professor Kevin Nelson, author of The God Impulse, people with forms of REM intrusion like sleep paralysis or lucid dreaming (in my case), are far more likely to experience an NDE. 60% of the 55 people in his study who had NDEs were prone to REM intrusion. Only 24% of the controls who had never had an NDE reported REM intrusion. While small, the results of the study are highly suggestive. This is a difficult subject to investigate, but I hope this study will only be the start.

REM intrusion is a phenomenon of blended dream states. Indeed, I actually experienced lucid dreaming within my NDE/coma-dream. Professor Nelson argues that REM intrusion explains the surreal aspects of NDEs. (He goes into the theory in much more detail in The God Impulse.) In short, it seems dreamlike because that's exactly what it is. And REM intrusion most certainly could account for the blended NDE of NoAZPhilsPhan.

Unless Heaven is not only "for real," but also is for the unreal.

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.

I won the lottery, but what I got was no prize

This is the blog I posted on Friends of the Mountain Dulcimer after my diagnosis of dermatomyositis was confirmed:

For someone who is not afraid to kvetch—hey, my people invented the word—it's kind of strange that I haven't let on about my recent health problems until now. Oh, I complained a bit about how wrapping all those Christmas gifts was killing my arms, but that was before I knew that there was something going on beyond my usual out-of-shape, pencil-armed weakness. I suppose a good way to tell if something is actually serious is if I'm too afraid to kvetch about it. And now that I'm well on the road to recovery, the fact that I'm ready to kvetch again could be taken as a good sign (for at least as long as you could stand it).

Dermatomyositis (DM) is a rare, but treatable, autoimmune disorder. Here's some info: http://mda.org/disease/dermatomyositis/overview and http://en.wikipedia.org/wiki/Dermatomyositis. Though I only received the definitive diagnosis on March 5, I first came across DM while consulting Dr. Google. I really didn't expect to find anything, let alone anything serious. I had already spent too much time fruitlessly looking for a match to the weird rashes I'd been suffering from. This time, on a whim, I added muscle weakness, pain, and the most severely affected skin areas (hands, elbows, and knees) as keywords. I quickly hit upon dermatomyositis. What I found left me deeply shaken. The distinctive DM rash called Gottron's papules matched mine in every detail of appearance and distribution, including the areas I had left out of the search terms. And I didn't even know that the painful cracking under the creases of my finger joints was called mechanic's hands until I saw it listed as a potential symptom. It was if a med student had been given an assignment to come up with an imaginary case-study and gone way overboard. But what scared me most was how the disease's most common course, rashes followed by weakness in the the muscles nearest the trunk, fit what was happening to me. Though the weakness in my already feeble arms was most obvious, I was also finding it increasingly difficult, not to mention painful, to stand up from a squatting position. Still, I consoled myself that DM was an extremely rare condition. I had never experienced any rashes quite like these before, but I had suffered from chemical- and abrasion-sensitive skin my entire adult life. Nonetheless, I knew I wouldn't rest easy until I could be sure that I didn't have DM, and I scheduled an appointment with my primary care physician.

With nerves added to my ADHD, I knew I would wind up leaving out important details, so I wrote a narrative account of the progression of my symptoms. At the very end I mentioned dermatomyositis, but I made it clear that I realized it was rare and I only wanted to rule it out as a possibility. My arms were already weak enough that I had to rest them frequently as I typed, yet when the doctor tested my muscle strength and range of movement my impairment was hard to tell from ordinary strain. Though he didn't order all of the tests I had read about it, he did test my creatine kinase level, a measure of muscle damage that is usually highly elevated in cases of DM. But, as it turned out, it was a little too soon for the disease process to show up.

My next stop, naturally, was a dermatologist. Unfortunately, none of my doctors were able to see my rashes at their worst because intensive treatment with over-the-counter cortisone products had been slowly improving them. The rash on my hands, however, was still quite evident. My fingertips and knuckles were red polka dots traced by lines that ran along the bony ridges of my hands like a connect-the-dots picture. I couldn't get out of my mind how closely it resembled the unique pattern of Gottron's sign, a hallmark of DM. But when the dermatologist got to the part of my narrative about DM, he was amused. “So you think you have dermatomyositis?” he said with a grin. He then proceeded to rattle off a handful of forms of dermatitis/eczema—each area seemed to have its own variety—and gave me some prescriptions for clinical-strength topical cortisone.

But as my rashes began to heal, my muscle problems continued to worsen. At this point I hadn't stopped playing the dulcimer, though the sessions were getting shorter and spottier. I found it difficult to keep my arms suspended over the fretboard, so even my noter hand would drop like a dead weight every few measures. It was getting harder for me to deny that there was something seriously wrong with me, but I did my best anyway. In the past I had suffered lower back strains that had refused to heal due to slight reinjuries. Wasn't that more likely than a rare disorder I found on the internet? So I decided to stop playing for a few days and to eliminate every possible source of strain to give my arms and shoulders a chance to heal. The days stretched on as the simplest tasks became a struggle, but it was also the beginning of the end. I emailed my PCP to tell him of my continuing muscle problems, and in response he gave me a referral to a rheumatologist.

I liked Dr. Bharadwaj from the start. It certainly didn't hurt that she told me I was smart for seeing that dermatomyositis was a potential diagnosis. Indeed, she considered it to be the second most likely behind psoriatic arthritis. The good news, she told me, was that both conditions were treatable, though if I had to have one it was better to have psoriatic arthritis. I was pretty sure I knew what she meant, and I'll get to that in a bit. The tests she ordered (I lost count at eight blood vials) soon tipped the scales toward DM, however. In a little over a month my creatine kinase level shot up from 175 (just outside the standard range) to 1075. Dr. Bharadwaj advised me to schedule a skin biopsy as soon as possible. Though it was better to hold off on treatment until after the biopsy to avoid affecting the results, she said if I felt I really needed it I could start on it sooner. I had been extremely leery of prednisone, but by this time my symptoms were worsening daily and I was ready to start popping it like candy. I was, therefore, dismayed when the earliest appointment I could get for the in-office biopsy was more than a month away. I sent an email to Dr. Bharadwaj to tell her about the delay, and I received a call from the dermatologist's office later that day. My new appointment was in two days. I told you I liked her.

When I saw the dermatologist for the biopsy, he examined the rash on my hands and remarked that if anything it looked even redder than before (actually, it was a lot better). Now, suddenly, it looked like “classic Gottron's papules” to him. None of that really matters though. What matters is that I filled my prescription for prednisone afterward, and from my first dose I started to feel better. A week later my creatine kinase level was down to 203 and it's now 109. Though I'm not yet back to my normal level of weakness, I am making steady progress. And I'm ready to start playing again.

Okay, so what about those aspect of DM that make it the less desirable autoimmune disease? Well, for one thing, there are the other systems that can become involved. Like my other early DM symptoms, it was easy to explain away my increasingly severe bouts of hoarseness because it was a symptom I had suffered from for so long in milder form, in this case due to allergies. Indeed, even when I learned about DM I found excuses to keep it off my already wide symptom checklist. But when I started to develop swallowing difficulties as well, the connection became impossible to deny.

To me, however, the scariest associated condition by far would have to be cancer. The relationship isn't well understood, but within the first two or three years after diagnosis there is a significantly increased risk that a malignancy will be found. After that the risk returns to near baseline. Fortunately, I've come up clean so far, but for the next few years this is going to be a sword of Damocles over my head.

I'm afraid that's a rather ominous note to end on. While I can't offer the kind of cheeky comic relief that Phil so memorably provided [Phil Chestnut is a member of Friends of the Mountain Dulcimer who had recently written about his hospital-gowned mooning as he paraded his backside down a hospital corridor]. I can at least leave you with a humorous coda. With the diagnosis of dermatomyositis all but certain, I bookended my appointment with Dr. Bharadwaj with a couple of cancer screenings. First up was an abdominal ultrasound. I had been assured that there was plenty of time between my appointments, but as the wait stretched on anxiety began to fill every crevice of my being not already occupied by the 32 ounces of water I had been instructed to guzzle an hour before the test. When I was finally led to the examining table, the sonographer asked why I was getting the scan. As she slimed my water-logged belly, I described the rare disease I found on the internet which was about to be confirmed as an even rarer case of googlitis that was real. And as I did so, she was quietly freaking out. Was it possible that the rashes on her body could be that too? After a few nervous questions she confessed the reason for her concern. I assured her that dermatomyositis was quite rare and she was unlikely to have it. Though I advised her to see a dermatologist, I added that I had a history of reacting to skin care products I had been using for years and she might want to try changing hers. That was the first thing I tried when I started breaking out with all those strange rashes.