Thursday, November 20, 2014
A year and a half ago, during my six-week coma...
More than a year ago, taking my first steps at a nursing home...
A few months ago, walking at the Sepulveda Wildlife Preserve, on the way to a natural-bottomed section of the LA River...
While vacationing in Sicily, I came down with Legionnaires' disease, which is a (usually) rare form of severe pneumonia, though I've had the misfortune of catching it twice. In both instances, it was due to the immunosuppressive effects of medications I've been taking for an even rarer autoimmune disease called dermatomyositis (DM). I began getting sick in the waning days of our vacation, but I had written off my hacking cough as a nasty cold. Call it Mussolini’s Revenge. A few days after we got back, however, my boyfriend had to rush me to the emergency room. I was in such a mentally altered state that when he asked me why I hadn't turned on the air conditioner, I said that I liked the heat. It was 105, and I hate the heat.
The Legionaires' disease caused me to develop a severe case of septic shock. The sepsis made my blood pressure plummet, causing a series of strokes on both sides of my brain. I fell into a deep coma. When the doctors saw the stroke damage on my MRI they concluded that I was a hopeless vegetable. Indeed, they didn't even perform a Glasgow Coma Scale test on me, and it's just a low-tech behavioral check list. But I was still conscious. I was, as a British vegetative-state survivor, Kate Bainbridge, put it,"in there." I had what is known as covert cognition. When the doctors shined lights in my eyes looking for signs of consciousness, I was telling them grumpily, "Leave me alone. I'm trying to get back to sleep!" Unfortunately, I was snapping at them that in my coma-dream. They took my lack of response in the real world as confirmation that I was completely unaware.
My research has shown that there is increasing scientific evidence of covert cognition in as many as many as one in five people with disorders of consciousness. I was in a state of the art hospital. I think it's an outrage that more isn't done to evaluate and help those one in five patients that are "in there."
Kate Bainbridge was the first person pioneering researcher Dr. Adrian Owen scanned with Positron Emission Tomography. She was the one who made the "in there" comment, in a note to Dr. Owen. After her PET scan detected her covert cognition, she received therapy that eventually helped her awaken from her persistent vegetative state (PVS). My doctors said that any form or stimulation or physical therapy would be futile. I was fortunate enough to wake up on my own, anyway. Sadly, Kate is now severely disabled due to the nature of her brain damage, though her cognitive function is fully intact.
Six weeks later, I woke up from the coma. I was so deconditioned that I could barely lift my head. Through intensive physical therapy, I've made a great deal of progress, but I'm still not back to where I was before the coma. And I continue to experience weakness in my arms and legs, which were damaged by my DM. It has been a hard road back, but it has been made harder by the six weeks of complete immobility. My strokes cause little physical damage. Almost all of my problems were due to the coma itself. If I had received medically supervised stimulation, I could've had a shorter recovery. I might even have woken up sooner. That's what happened with Kate after Dr. Owen discovered that she was still aware.
Dr. Owen has communicated with a number of other patients with disorders of consciousness using functional magnetic resonance machines (fMRI). FMRI machines are expensive and aren't mobile, so he's devising ways to use electroencephalograms (EEGs) to detect covert cognition. In fact, they recently published a paper that showed some success in this endeavor. Perhaps they'll succeed in getting patients to communicate with EEGs, as well. I was given an EEG after my strokes. I wouldn't be able to write this if I were brain dead (except in the morning), so you won't be surprised to learn that they detected brain activity. Unfortunately, the EEG, at least as it's now performed, couldn't detect that I was experiencing a rich "coma-dream," as I call it.
The coma-dream was my skeptic version of a near-death experience. Instead of seeing spirits, I saw miniature zoo animals having a tea party--like poker-playing dogs, only with tiny china cups. The elephant held the teapot with its trunk. The revolving segments of my coma-dream were often interrupted by the things my loved ones were saying, reading, or playing for me to stimulate my recovering brain. The doctors, however, continued to dismiss the signs of my increasing awareness.
I worry, as Kate Bainbridge does, that people are having their plugs pulled because doctors are telling their loved one, as mine did, to give up all hope for their full recovery. How many of them are in there too?
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.