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?
What an incredibly journey you have been through. Thank you for sharing. -Samantha
ReplyDeleteI have indeed. Thank you so much for your comments, Samantha!
Deletegood post
ReplyDeleteThank you, Jack!
Delete