Friday, November 13, 2015

Another view from the other side of the bed

This was taken as I was being transported to All Saints Healthcare, five days before my awakening.
I've read some truly heartbreaking comments from people who have faced the wrenching situation of having loved ones in comas. They came when my Skeptical Inquirer article, "Covert Cognition: My So-Called Near-Death Experience" was posted online and after SI shared a link to my VICE Post Mortem column interview on Facebook. One woman was forced to pull her father's plug because he had a DNR, and another hoped that his son, who had been in a coma since he was 14, wasn't aware of his situation. And those are just two that were moved to comment on Facebook. How many read my article or the interview and mourned anew, but never commented about it?

In my post about this, The view from the other side of the bed, I expressed regret that I had caused them emotional distress when I wrote about the potentially one in five patients with disorders of consciousness who are covertly aware. I vowed to be more sensitive in the future to the family members who have faced this impossibly painful position.

Though my consciousness, so to speak, had been raised, the truth of the matter is that I still feel my greater obligation is to the covertly aware patients who can't speak for themselves. This issue is becoming more pressing by the day as methods of bedside covert cognition detection inch closer to reality.

One story I recently learned of, however, left me feeling heartened that not every loved one of comatose patients was pained by reading my account. Indeed, some may have felt consoled, like the sister of a Facebook friend who had been forwarded my post for the Secular Spectrum, "Please Put a Blanket on Me"--I Was Aware in My Coma. She was confronted with the same heartrending situation with her mother as the other daughter, in which she was also forced to disconnect her parent from a ventilator due to a DNR. But instead of wrestling again with her painful decision, she felt comforted by the information I gave about covert cognition and specifically my own experience.

While I was in the coma, Keith set up a pillow speaker so he could play my favorite music for me. He wanted to keep my mind engaged even when no one was there to do it for me. The music, like The Hitchhiker's Guide to the Galaxy and documentaries, seeped into my coma-dreams. I had wondered why I was able to "daydream" the music in such perfect detail.

As it turned out, my friend's sister had played soothing music for their mother as she lay in her coma. Knowing that it was possible that her mother could hear it gave her considerable solace. It's heartening to know that in relaying my story, I'm not hurting every loved one who has been placed in a situation that no one ever wants to face.

The fact is that there is no way to know if her mother was among the one in five covertly aware patients. The odds are against it, but does it really matter? Few sign a DNR unless there's a good reason for it. But if her mother did indeed have an island of awareness left, she went out surrounded by loved ones, listening to peaceful music as she drifted off for the last time.

Could any of us hope for anything more?

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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.