Thursday, February 19, 2015

Silence is not always golden

One thing that continues to puzzle me about the two times I had tubes down my throat that prevented me from talking: Why is it that the means to communicate weren't immediately provided to me? Surely I wasn't the first patient who ever wanted to express their wishes when they had a trach or were intubated. In my ICU room during my second bout of Legionnaires' disease, I had to write on a white board covered with smiley and frowny faces to indicate levels of pain and a simple alphabet for laboriously pointing to one letter at a time. I wrote on the margins because there was no room to request an extra pillow, ask a question, or answer a doctor's question, let alone communicate with loved ones. How can a person with ADHD--who talks at warp speed--express her thoughts one letter at a time? Still, that was an improvement over when I awoke from my coma with a tracheostomy tube in my throat.

That time, my loved ones had never had to face this kind of situation before. But what about the medical staff? Yes, I had trouble moving my hand after I awoke from the coma, but I could've managed some roughly scratched words. And yes, patients in my situation are often incapable of communication due to brain damage. But a woman I shared my room with in the nursing home was also recovering from a coma with her intellect intact. Her friend brought her a child's Magic Slate toy that she could clear by lifting the plastic cover sheet. I had to try innumerable times over a couple of days to mime writing with a pencil and paper before someone finally guessed what I wanted. No one in the nursing staff figured that we might want a way to convey our needs? Or express thoughts of any kind?

It's true that many people in the nursing home have trouble communicating due to Alzheimer's disease, but there were plenty of others who had no mental deficits. Shouldn't every mentally competent person who can't speak be handed an empty white board, or at least a pad of paper and a pen?

Maybe it has something to do with the dehumanization of patients. Or, maybe they can't complain because no one has provided the means to do it.

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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.