Sunday, September 6, 2015

The view from the other side of the bed

When I wrote my Skeptical Inquirer article "Covert Cognition: My So-Called Near-Death Experience," I was hoping that my experience and my research into covert awareness would help inform the public about the one in five people with consciousness disorders who have covert cognition. But it didn't occur to me (but should've) that my article would also affect the family members who have already faced that unimaginably painful position...from the other side of the bed.

After Skeptical Inquirer shared my VICE Post Mortem column interview on Facebook, which linked to my article, one woman thought the article was fascinating, but also found it “very painful and heartbreaking to read.” That's because she was forced into a situation no one would ever want to be in. Her father was in a coma and he had a do not resuscitate order. She sadly, and obviously extremely reluctantly, gave the order to pull the plug.

I gave her my sympathy and told her that if he had a DNR, then she did what he wanted. Few ever sign a DNR, and those that do usually have a good reason for it. But ever since she was forced into this wrenching decision, she's probably had pangs of doubt. And then she reads my article explaining why people like her father might still be "in there."

In answer to someone who posted that it sounds frightening to be trapped in a seemingly endless dream/nightmare, I responded that it wasn't really that scary. But another Facebook member, who is living through every parent’s nightmare, responded, “I try not to think how frightening it would be. My son has been in a coma since he was 14. He's now 31.” And in a second post, he added, “I hope it's just blank.”

I said, “I'm so sorry to hear this. My heart is with you.” But, really, there’s nothing anyone can say to ease his anguish. I certainly hope I did nothing to deepen it. I'm afraid the answer is that I did, and it makes me sad. Replying to another poster, he said, "One person's comatose recollection does NOT a true story make." He has good reasons to wish my story weren't true, and I hope for him that his son is among the four out of five patients without covert awareness.

It’s likely that many more who have faced these unimaginably painful situations read my article in SI and the VICE interview. Do I regret publishing it? No, because I think my greater obligation is to those voiceless patients with covert cognition. How many are having their plugs pulled not because they have a DNR, but because their doctors say they're hopeless? Kate Bainbridge and others who were in similar situations have spoken of the same concerns. As a writer, I'm in a unique position to spread knowledge of covert awareness to the general public. Perhaps in the future, my words will give ammunition to the arguments of the family members of the covertly aware when doctors pooh-pooh their observations, as mine did.

The daughter who faced that horrific choice with her father noted the advances in covert cognition research Dr. Adrian Owen I mentioned in my article. I added that he’s made considerable progress in developing techniques to detect covert awareness in community hospitals. In the future, people like her may no longer be forced to guess about cognition of their loved ones. 

So, would I do anything different? Yes, next time I will add a sympathetic paragraph about the countless families facing that inadequate testing and incomplete knowledge.

My heart goes out to them all.


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Coma Girl

Coma Girl

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.