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?
- 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.