July 9, 2013 was my intro into what Dr. Adrian Owen refers to as the Gray Zone. It was the day I entered my six-week coma/vegetative state. Like the Twilight Zone, the Gray Zone is a middle ground between light and shadow, between science and superstition.
As many as 20 percent of consciousness disorder patients are covertly aware. Yet few of them experience a complete cognitive recovery. Hell, I came out damn near scott free, with relatively few lingering physical limitations and no cognitive ones.
It’s times like July 9 and Coma Day — the day I exited the Gray Zone — that I reflect on how very lucky I’ve been.
A believer would say godditit, as so many did after my awakening. As a secular-raised atheist, my response would be to say it was dumb luck, perhaps adding a shrug for emphasis.
Dr. Owen would agree, both because of his growing understanding of the Gray Zone and because he too is an atheist, as he declares in his new book, titled — wait for it — Into the Gray Zone.
Like the covertly aware patients Dr. Owen writes about in the book, my doctors labeled me a basket case. They refused physical or cognitive therapy for this profoundly brain damaged vegetable, advising my loved ones to give up all hope for full recovery. Even if I somehow survived — and by some unlikely stroke of good fortune I emerged from my vegetative state — I would never be the same.
Indeed, I would be very unlikely to ever be able to leave the nursing home I was eventually warehoused in.
Though I didn’t receive rehabilitative therapy, my loved ones took it upon themselves to provide the mental stimulus my doctors wrote off as pointless. Keith read Hitchhiker’s Guide to the Galaxy to me, while my mom played for me her audiobook version of H2G2 (the fan shorthand for Hitchhiker’s Guide). Keith put together an iPod version of a mixtape of my favorite music to keep my brain occupied when my loved ones couldn’t be with me.
My mom and Keith also spent hours talking to me, a monologue recited in hope that audience was in attendance.
When Dr. Adrian Owen and Dr. David Menon placed Kate Bainbridge in a PET scanner, they had no reason to believe that Kate would show signs of awareness.
It was mostly pure scientific curiosity that led them to ask Kate’s parents for photos of Kate’s friends and family, in the remote chance that she would register recognition during the 90 second scans. But then, Dr. Owen had a very personal reason for wanting to know.
His former fiance had fallen into a vegetative state after a brain hemorrhage. Could there anything going on in Maureen’s mind? Dr. Owen couldn’t test his former love, but Kate lay there in the hospital in which he was attached, seemingly just as unresponsive.
If you’ve been following my posts on covert cognition, you’ll know that Kate Bainbridge did respond. And exactly the way a healthy person would. In doing so, her case made medical/scientific history, after Drs. Owen and Menon wrote up the experiment in The Lancet.
Dr. Owen ponders what would’ve happened if they had tested one of the 80 percent who aren’t “in there,” at least not detectably. I’m not a subscriber to the “great man” theory of history. I believe someone would’ve eventually discovered the Gray Zone, given the advances in brain imaging technologies.
Though I doubt the field would’ve found anyone more dogged and hungry to advance the field.
Furthermore, I don’t think it’s a coincidence that Kate later regained full awareness. Though Dr. Owen has no scientific proof, he obviously agrees with my biased assessment.
More than two years later, Dr. Owen scanned a patient named Debbie. She showed signs of intermittent communication with her loved ones, but never to medical personnel.
Now that rings a bell. (For me it was improved awareness and movement that the doctors pooh-poohed.)
Debbie responded to the words Dr. Owen and his team played to her. And like Kate, she too eventually began to mentally recover (though both were far more physically disabled than I was even at the beginning).
Once again, Dr. Owen lets slip the suggestion that Debbie may have received increased mental stimulation after their test reveal almost normal cognitive functioning. It’s impossible to prove that the stimulus occurred in those cases. Any experiment in the future would be unethical. And how would you even design a placebo?
Into the Gray Zone, incidentally, is the book for which Dr. Owen asked me to provide my hospital records in case he wanted to refer to my case. For the record, I don’t think he does (though I haven’t finished reading the book yet).
Out of the Gray Zone, Inspired by Hope
Dr. Owen never treated me, but his research inspired Keith to suggest my mental stimulation program. And though my doctors thought it fruitless to even try, Keith was repeatedly encouraged by nurses and nursing assistants to talk and read to me.
These medical personnel see patients far more frequently than doctors, who often spend mere minutes at the bedside of individual patients. Their constant rotation assures that there’s little continuity of care, with no single doctor following a patient’s progress over time.
In fact, it’s clear from reading the case studies Dr. Owen recounts that family members of covertly aware patients almost invariably report signs of cognition that even the most experienced clinicians are unable to replicate. I think this is due to a combination of factors. Loved ones spend more time with patients. And I also think that vegetative patients are more likely to respond to the people they love.
This is a form of physical therapy for their damaged brains, stimulating their damaged neurons to rewire and repair. That seems especially clear to me in a case with many parallels to my own. (I’ll write about it in more depth in a future post.)
After spending an evening with friends, nineteen-year-old Juan Torres was discovered by his mother suffocating in a pool of his own vomit. At the hospital, he was found to have suffered the same kind of oxygen-starvation brain damage I did.
Like my case, that was a stroke of luck, so to speak. If anything, his recovery has been even more remarkable than mine. He was rated as being a three on the Glasgow Coma Scale — the lowest possible before death. He’s now fully conscious, albeit with slightly slowed down mental processing (kind of like I am in the morning).
Like the wife of a minimally conscious patient who recently contacted me for advice, Margarita Perez, Juan’s understandably desperate mother, turned to unproven therapies to help her vegetative son. But she also contacted Dr. Owen’s Brain and Mind Institute lab.
Though they tested her son with every one of their celebrated techniques to detect covert cognition, Juan failed every single one — twice. But in keeping with lab policy, they contacted Juan’s family seven months later to inquire about his progress.
Why don’t you ask him? Margarita replied.
To her credit, Margarita doesn’t call Juan’s recovery a miracle. (Though she does think it was due to his special vitamin regimen and hyperbaric chamber treatments.) It seems more likely to me that these concerted efforts signal intense attention to Juan.
His mother’s love was the most powerful treatment of all.
Being moved about so frequently may have contributed, as well. My first stirrings of awareness occurred when I was moved into the MRI imaging room and slid through the scanner. Indeed, every time I was significantly disturbed, I gained a bit more awareness and movement.
I awoke five days after being moved to a nursing home.
It’s disturbing that the Owen lab failed to detect that Juan was in there. He flunked even the portable EEG system they’re developing, which promises to spread awareness testing to community hospitals and nursing homes like I was in.
For the extremely rare few — like Juan and me — no medical intervention is necessary. But the Owen lab’s efforts promise to shed sunlight on the darkened world of the less fortunate.
If stimulus does indeed shine a light into that vegetative gray zone between life and death, Dr. Owen and his team may hold the key to awakening for countless others.
No miracle required.
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