Friday, July 24, 2015

Donating my brain to science while I'm still alive

Dr. Adrian Owen, wearing an EEG cap, probably much like the one I wore when an EEG was performed on me during my coma.
While I am an organ donor, I'm quite that dedicated to the cause. I do occasionally use my brain as something more than a counterbalance to my nose, which is still somewhat prominent, despite my nose job. But I will be answering Dr. Adrian Owen's questions about the things I experienced in my my brain while I was covertly aware during my coma. It will be for his upcoming book as he comes to the relevant chapters.

This week, I realized that Dr. Adrian Owen had finally responded to the email I had sent him detailing my coma experience, at his request. It had languished in my Junk folder for a few days until I noticed it. He had been so wrapped up in his book that he hadn't gotten a chance to respond. As as writer, I can completely understand that. Anyway, here's the backstory: I had sent him a tweet when the Skeptical Inquirer article came out because I thought he and the Owen lab would be interested in the article, since it refers to their work extensively. The Owen Lab website does an excellent job of presenting media and journal links. In fact, much of the information in, "Covert Cognition: My So-Called Near-Death Experience," was gleaned from article and media links on their website. When my article is made available in the Skeptical Inquirer archive, I would be surprised if they didn't add that to their library, as well.

I also suspected that Dr. Owen would be curious about my case, since it's rare that patients in my situation recover so fully. And how many of them are also writers who can articulate their experience well? Indeed, I had sent an email when the article was accepted. But for whatever reason, I never received a response, not even in my Junk folder. It's possible that's where my email wound up, as well, amidst the ads for penis enlargement miracles and urgent correspondence regarding unknown benefactors in Kenya.

At any rate, he told me that parts of my experience were similar to other cases he has seen. That's fascinating to know...tell me more! I had also offered to send him a copy of my medical records while I was in the hospital (I have a copy to aid my memoir), and he's asked to see it to help him understand my case better. (I can't wait to hear his insights!) He queried me, as well, about the closest big city to where I live. Los Angeles, I told him. Ever heard of it? I think he inquired because he might ask me to get some tests. Is it too much to hope that it might be a fMRI, like I discussed in the article? I love the idea that I might be contributing something to science! I wanted to grow up to be a scientist, and this is the next best thing.

I'm afraid I may have come off sounding a bit like a fangirl in my response because of his groundbreaking work in a field I now feel passionate about. To me, he is a rock star of covert cognition research. Indeed, Dr. Owen plays guitar, and he used to be a member of a rock band called, You Jump First. Okay, I will, but I did urge him to write a popular science book about covert cognition eventually. To advance the science, you also have to increase knowledge of it for those potentially one-in-five patients with disorders of conscious who have covert cognition. You can't help them if no one even considers that they might be still "in there."

In every interview of Kate Bainbridge I've read, she's commented about how lucky she was that Dr. Owen scanned her and saw those sparks of consciousness as she reacted to pictures of her family. Dr. Owen was fortunate, too, because that discovery set him on his current career path. But luckiest of all are the covertly conscious who will someday be helped by Dr. Owen and his fellow researchers in the growing field of covert cognition research.

Someday, perhaps, the covertly aware won't be shoved into the Junk folder of humanity.

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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.