Friday, April 17, 2015

The gift of life


Sunday I will celebrate my second birthday since I awoke after a coma from which my doctors thought I would never escape. My mother believes that my nurses were trying to gently nudge her toward pulling the plug eventually when they talked about how poor my quality of life had become. But was I really suffering? Unbeknownst the them, I was living through entertaining adventures in my coma-dream, like watching miniature zoo animals holding a tea party. As I passed this scene, I said, "They must be filming a kids' show," as if that would explain it. Dream logic.

About the same time, a doctor discussed with Keith what they should do when--not if--I started going into cardiac arrest. Yeah, I was that close to death. I know my believer friends think it was a miracle that I survived. To me, it was a miracle of modern medicine. Plus, I was very, very, lucky.

But what about those potentially one in five patients with covert cognition who haven't been so lucky? My mother and Keith weren't about to pull my plug, but I know a lot of people think, "He/she would never want to live this way." If it comes to that, they would make that terrible decision. How many of those unfortunate people are having their own coma-dreams, happy in their fantasy worlds?

Kate Bainbridge, the vegetative-state survivor I talk about in my upcoming (July/August) Skeptical Inquirer article, "Covert Cognition: My So-Called Near-Death Experience," has expressed similar concerns, as have others who were in the same situation.

As much as medical advancements saved my life, there is much that medical science still doesn't know. Indeed, the word about the latest findings about covert cognition hasn't yet gotten out to all the doctors in the field. My neurologist isn't even familiar with the groundbreaking research of Dr. Adrian Owen and his colleagues at the Brain and Mind Institute. He was the one who discovered Kate's covert cognition when he was still at Cambridge University. Thanks to Dr. Owen, Kate received therapy. Though she's severely disabled now, her cognition is fully intact. Like mine is.

I was fortunate enough to have Keith and my mother to read and talk to me, trying to keep my mind engaged. Much of what they said, read, and played for me leaked into my coma-dream. But I didn't receive therapy, physical or otherwise, because my doctors said it would be useless. I believe that my recovery might have been a lot shorter if I had received it.

Still, the doctors saved my life, and of course I'm grateful for that. I've gotten a second chance at life. But how many people have never had that chance because someone close to them thought they were saving their loved one from suffering? It's a wrenching decision for them, obviously. They're only doing it because of their love. But Dr, Owen has been able to communicate with people who were thought to be beyond hope--profoundly brain damaged--just like my doctors thought. Even if they don't wake up like I did, it may be possible to communicate with them. And then they can decide for themselves if they want to keep on living.

Being a writer, I feel an obligation to use my writing skills to educate the public about covert cognition. Maybe through my efforts, some of those one in five people will be celebrating more birthdays of their own.

While I was in the coma, apparently, Keith told me that when I woke up, I could use my writing to help people like me. Unfortunately, that's not one of the things I remember from my coma-dream, but he knew me well enough that it's come true.

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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.