Wednesday, March 18, 2015

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.

Friday, March 13, 2015

Hair today, gone tomorrow: The sequel

This was taken shortly before I came home, when my hair was already pretty thin.

Keith reminded me how much hair I lost during the detangling. He knows because after I came home from the nursing home he had to help me with the detangling...for hours. I tried my best to detangle my hair before I washed it, but it ended up with many soggy Gordian knots. Joella usually helped me when I was in the nursing home. Every time I was given a shower--which was not as often as I was supposed to (that's something for a future post)--I would need my hair unbraided, detangled, then rebraided again. Each time, I lost handfuls of hair. So, while my ARDS undoubtedly contributed to the hair loss, it was aided and abetted by the braiding. That was the other reason why I didn't want Teresa to know why I had to get my hair cut.

Thursday, March 12, 2015

Hair today, gone tomorrow

Two figures with full manes at Donnafugata Castle in Sicily.
Here is the long, sad, tale of my hair. It starts when I was 10, trick-or-treating on a windy day. [This is actually about my recovery...eventually.] I was dressed as a vampire, with a cape that was actually a heavy coat with the sleeves tucked inside. I also had green make-up smeared all over my face and glow-in-the-dark fangs, with blood dripping down them onto my chin. But I was still self-conscious enough about my bushy, frizzy, curly hair that I brushed and futzed with it to calm it down as best I could. In its natural state, I have what is euphemistically known as a Jewfro.

So, I headed out with my goodie bag. As I was nearing the end of my circuit, I came to a house. These were the days when kids could go out by themselves on Halloween without their parents being charged with child abuse, mind you, so I was alone. I rang the doorbell, and a lady gave me some candy. As I was about to leave, the woman said, "Oh, and by the way, I love your wig!" She meant it as a compliment, and she probably didn't even notice that I was crying as I headed back home.

It took me years to realize that my hair looked a thousand times better if I only brushed it when it was wet, then let it dry into long ringlets. That reduces the volume and produces nicely defined curls. I started adding gel later. Before my coma, I used to get a lot of compliments on my hair, something I never thought would happen in the Jewfro years.

But during my coma, my long hair was becoming a tangled mess. Curly hair tangles worse than straight hair. My mother used to use an electric detangler on my hair when I was a kid. To me it was a torture device. Now that was child abuse! But--flash-forward to when I was in the coma--they were going to chop off my hair. I suppose that would've been my mother's only choice if she hadn't used the detangler. But a kind nurse named Teresa saved my long tresses by braiding it after her shift ended. She wasn't even assigned to me.

Once I awoke from my coma, Teresa told me that she could tell that her detangling efforts hurt me because I would flinch. She rebraided my hair a few times after that, and she did such a great job that the braids held for weeks after I awakened.

Teresa working on the final touches.
When I returned to the ICU after my second bout of Legionnaires' disease, Teresa noticed that I had cut my hair short. I didn't have the heart to tell her that it had thinned so much that I was forced to have it cut. I had thought the thinning was from the continual braiding and rebraiding in the nursing home. Apparently a lot of the CNAs know how to do that for the patients to help keep their hair from looking too messy. But, from my research, it seems that many patients who suffer from acute respiratory distress syndrome (ARDS) like I did later lose their hair or experience thinning afterward. They also develop Beau's lines (aka Beau's ridges) in their fingernails, as I did as well. So, the braiding probably only accelerated the hair loss and not until after I entered the nursing home, so it definitely wasn't Teresa's fault. But I didn't want her to think that it was. Thanks to her, I didn't wake up shorn like a sheep. At the time, it looked like I wouldn't even survive. She stayed late after her shift to save the hair of a woman she wasn't assigned to who was probably going to die or be left irreparably brain-damaged, anyway. I owe her a dept of gratitude.

Beau's ridges (no, not Beau Bridges)
As much as I despised my naturally big hair, I disliked having such a paltry, straggly mane even more. Still, I hated having to cut it short. I cried thinking about the prospect, but I knew I had no choice. I searched through Yelp until I found a parlor known for being good with curly hair that was close by, Trilogy Hair Studio. Supercuts, where I used to get my simple straight cut, would not do. Kaylie has been doing a great job on my hair, guiding me through the growing out process every three months. She's been surprised and amazed at how thick my hair has become. I wasn't.

Along the way, I've decided that I like not having to spend as much time as I used to detangling and washing my hair, not to mention touching up my frizzed-up curls. That would've been a real trial during my recovery. And I have to admit that it does look cute at its current medium/short length.

It's getting closer to its eventual length now. One thing is certain. It will never be called a fright wig again.
Outside of Trilogy Hair Studio after my latest haircut.

Friday, March 6, 2015

Keep on the sunny side

This was taken on one of our rehab walks, so I was just pretending. Notice the mismatched socks. I had forgotten to take off the second slipper sock, possibly because I wasn't awake yet.

Experiencing multiple strokes on both sides of your brain and falling into a 6-week coma can have some upsides.

For one thing, I've been forced to break some of my many bad habits. Among the top ones is the crazy night-owl sleeping schedule I was keeping before my illness. BCE (Before Coma Era), I too often greeted the sunrise only because I hadn't gone to bed yet. In the nursing home, breakfast was at 7 am, so sleeping in was not an option. And when I left the nursing home, I was forced to get up at 6 am along with Keith, since he had to make breakfast and prepare things for me before going to work so that his mom wouldn't have to do too much for me. Fortunately, I'm a lot more self-sufficient now.

I'm still a night owl inside, but I value sleep much more than I used to. I no longer sacrifice sleep for things that really could wait until the morning. Of course, I'm not exactly at my best then, and I frequently wake up cursing the sunshine for looking so cheerful. But being in sync with the rest of the world has its perks, too. My screwed up sleep schedule often made it hard to see museums, which is one of our favorite things to do.

And I never realized how much I would enjoy garden and nature walks. It's kind of hard to do them in the dark--unless you're looking for actual night owls. Even after I no longer need the walks for rehab, I want to continue doing them. When I'm feeling down, my mood always lifts when I'm walking through forest canopies or soaking in the lovely colors and textures of gardens. BCE, I went to the Sepulveda Dam Wildlife Preserve with Keith only once, and that was because he had extolled its charms so often. I've been there countless times during my recovery, however, and I've come to look forward to watching the wildlife there. I took walking for granted until I couldn't do it anymore. BCE, walking was a drudgery, but now it unlocks nature for me.

Last Tuesday, we were heading to our polling place, which was only a few blocks away. Keith was going to drive us, but he asked if I wanted to walk. I said, "Sure. Walking is good for me." When we were on our way, Keith remarked that I never would've agreed to walk there before my illness. I couldn't have ridden the stationary bike more than a fraction of the time I can now, either...assuming I even tried. And I want to keep that up after I no longer need it for rehab, too. Walking through museums and on vacations will be a lot easier thanks to my improved endurance.

What's more, nearly dying made me want to live. I didn't want to die before, of course, but I also didn't do anything to ensure my continuing health. Most people don't. Death may be inevitable, but it doesn't seem real until it almost happens. I was incredibly lucky this time, but next time I might not be. I'll probably live longer now that I've decided to take my health in my own hands.

I'm still not a exercise or health fanatic, but I did receive a wake-up call (even though I accidentally fell back asleep for a half an hour yesterday). I will never be a morning person, but I'll probably have a lot more groggy mornings because of the positive changes in my life.

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Coma Girl

Coma Girl

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In July of 2013, I fell into a six-week coma and nearly died. When I awoke from the coma, I could barely lift my head. It has been a hard road to recovery. The doctors advised my loved ones to give up all hope for my full recovery, but while they were shining lights in my eyes to gauge my level of consciousness, I was telling them grumpily to leave me alone because I was trying to get back to sleep...in my coma-dream. I was experiencing covert cognition, and the coma-dream was my version of a near-death experience. I'm a skeptic, so I saw surreal images instead of spirits or dead loved ones. According to my research, as many as one in five people with consciousness disorders have covert cognition.

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.