Thursday, July 30, 2015

Forever malwary

Yesterday, someone hacked my computer. Every time I tried to log into Blogger, I was instead prompted to sign into one of my Gmail accounts. It even happened when I clicked on the "B" from another person's blog. It doesn't appear that they got any sensitive information or caused any damage, but it did hijack my day and left me feeling violated.

But that's not what this blog is about.

It occurred to me that my illnesses have been a lot like that. Out of nowhere, I developed dermatomyositis. As the prednisone was arresting the DM muscle damage, the immunosuppression I developed from the prednisone caused me come to down with listeriosis and Legionnaires' disease. The Legionnaires' disease triggered a severe case of sepsis, which dropped my blood pressure drop so low that I experienced a series of strokes on both sides of my brain, and I fell into a six-week coma.

Okay, so that's a lot more convoluted, not to mention more serious, than what happened yesterday. After all, I'm still recovering from the strokes and coma; all I'm doing about the hacking incident today is running an extra anti-virus scan.

What they have in common is that something completely out of my control took over my life. Furthermore, cancer is a bit like malware. A malicious bit of code, genetic in this case, takes over your cells. As far as I know, I don't have cancer, but the increased risk of malignancy that comes with DM means I have to be ever-vigilant. Though the malware scan we ran yesterday seemed to have fixed my computer's infection, there's no guarantee that any cancer I might develop would be so amenable to cure.

The bottom line is that any time, something can come along and take control of your life. Of course, that hacker's aim wasn't to prevent me from writing this blog. The DM, Legionnaires' disease, strokes, and coma, weren't part of a plot to make my life miserable or kill me. When you're an atheist, you accept that bad things happen, and it has nothing to do with you. You just deal with it, run the scan or do the exercises, anything thing you can do move on with your life.

The plugged in know if they want to stay online, they have to accept the risk of hackers. All humans recognize that in life, they face constant dangers. Atheists believe that nothing can protect them from those hazards. Those that are all of the above do their best to be prepared.

Monday, July 27, 2015

Every step I take, every move I make...

This Sunday, at the Japanese Garden.
Hanging on for dear life on a previous visit.
From the beginning of my recovery, milestones have been achieved before I realized it. I'll be performing some task that I always took for granted, and it's some time before I suddenly realize that I'm doing something I couldn't do before. Yesterday was one of those days.

This phenomenon is one of the main reasons that my recovery has forced me to become more willing to take on physically difficult endeavors. That and nearly dying makes merely feeling dead seem less dreadful somehow.

It's also the reason why I waved off the well-meaning suggestion of one of the volunteers at the Japanese Garden that I take the stairless route out the back of the tea house. And that's why I climbed every step in the garden. Yeah, I know it's harder--that's the point. "It's good for me," I assured her.

Indeed it was. I noticed there was something different in the way I marched up the open steps without rails within the garden, a certain ease. And I was doing it much faster, too. I thought, wow, I really have gotten stronger.But it wasn't until I ascended the steep flights to the observation area that I realized that I was mostly powering up the steps without pulling myself up using the rail. I used to cling to rails as if they were life preservers, which I guess they were. Then came the real shock: I was taking the steps in sequence. Instead of step, stop, step, stop, I was actually climbing the stairs, one step after another! I haven't done that since before I developed dermatomyositis, which damaged the very muscles I need to perform this instinctive movement. And that was before the strokes and coma.

This is the reward that awaited me.

Plus the knowledge that I was one step closer to complete recovery.

For more feats of stairing-do, at the Japanese Garden and elsewhere, check out my recovery walk Tumblr.

Friday, July 24, 2015

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.

Wednesday, July 22, 2015

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.

Thursday, July 16, 2015

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.

Friday, July 10, 2015

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?

Friday, July 3, 2015

It happens

Last Sunday, on my rehab walk. I used to need Keith to help me down steps without rails. On most steps, I don't need to go sideways anymore, but these were kind of steep.
I've talked about my resilience and the equanimity in which I've faced the countless tribulations related to my illnesses and recovery. These qualities seem to surprise many people, most of them believers. I've also discussed the varied lessons nonbelievers and the religious might take from my recovery. But what about the different ways the two groups react to similar trials in their lives? What role did that play in my attitude?

I can't presume to speak for believers, but from the outside, they seem to react first with prayer. I know the idea that God will save them from whatever terrible battle they face, or at least give them the strength to cope with it, is immensely comforting to them. But they're more likely to wonder if God is punishing them for something, as well. The things believers say to each other in times of trial tend to reinforce this way of thinking. God is trying to teach you something. God doesn't give you any burdens you can't handle. Or, the ever popular, it's all in God's plan. And even if they don't worry that it's a punishment, God is still doing this to them. Everything happens for a reason, as people so often say. I would take that kind of personally, myself.

One thing I've always wondered about prayer is, why is it even necessary? Surely the all-knowing God is aware that you don't want this cancer, autoimmune disease, or whatever. Will he only heal you if you beg? And if it's just that he needs to ensure that you're sufficiently devout, then isn't the affliction a form of blackmail?

Atheists and skeptics, on the other hand, are more likely to research their conditions to better understand what's going on, acting to improve their odds in some way. For example, the first thing I did when it looked like I almost certainly had dermatomyositis was schedule cancer screenings due the increased cancer risk associated with DM. I received my first abdominal ultrasound on the same day I got the official diagnosis from my rheumatologist. I've been getting the tests on a regular basis because I'm still in the 2-3 year period of elevated risk. It's quite unpleasant, but not compared to ovarian cancer detected too late. I won't even go into the colonoscopy (hint: the preparation was the worst part).

Nonbelievers also don't waste much time wondering why this is happening to them. Why? Because the universe doesn't care a whit about your existence. You're not even a pimple on the ass of the universe. And, at any rate, the universe can't do anything but expand endlessly, or eventually contract into the Big Crunch. Sounds like a candy bar, doesn't it?

This philosophy can be strangely comforting, actually. You haven't done anything to deserve this; it has nothing to do with you. As a great philosopher once said, "Shit happens." Unshitty things happens too. The nice thing about randomness is that any time things can turn around again. To the extent you can control things, your fate is in your own hands. And the only lessons you'll receive are the ones you choose to take from your experience. I've learned a great deal from my strokes and coma, but it all comes from nearly dying and my struggle to recover. In truth, I'm teaching the lesson to myself. My experiences were simply the coursework.

But at least the religious believe that if they die they're going to heaven, crossing that rainbow bridge to meet their lost pets and their dead loved ones in their exclusive heavenly Club Med. Yup, you've got me there. I think I'm going into the ground and the only thing I'll see are the worms eating my flesh. Only I won't be seeing them because I will be dead as a coffin nail.

And that's my point. I have no choice but to soldier on, accept what's happened, and do the best to conquer my obstacles. No one was going to make me walk again, just as nothing can save me from my ultimate doom. That's why I want to do whatever I can to make that eventuality as far off as possible. Shit happens, so watch your step.

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Coma Girl

Coma Girl

Not a miracle recovery, but a miracle of modern medicine

In 2013 I fell into a six-week coma and nearly died after I contracted legionella. The Legionnaire's disease was in turn triggered by immunosuppression caused by the prednisone I was taking for my rare autoimmune disease, dermatomyositis.

I suffered a series of strokes on both sides of my brain when the sepsis caused my blood pressure to plummet. I fell into a deep coma. My kidneys and lungs began to fail, as my body was began dying one organ at a time. My doctors told my loved ones to give up hope for my full recovery. They expected me to die, and even if I somehow lived, I would remain a vegetable or at best left so hopelessly brain-damaged that I would never be same. But unbeknownst to them, while they were shining lights in my eyes and shaking their heads, I was telling them in my coma-dream--my secular version of a near-death experience--to leave me alone because I was trying to get back to sleep. I was experiencing what is known as covert cognition, the subject of my Skeptical Inquirer article "Covert Cognition: My So-Called Near-Death Experience," which appeared in their July/August issue.

But it wasn't a miracle--despite what so many continue to believe--that I recovered so fully. I owe my life not to God, but the miracles of modern medicine, as well as the nature of the watershed-area brain damage I suffered, as I detailed in my article and in this blog.