Friday, December 18, 2015

SfMCR: Gaining the Power of the Pen


Days later, tapping out words one letter at a time on my Kindle. You can see the awkward way I was grasping the stylus, just as I was holding the pen.
I've always been talkative. So you can imagine what hell it was for me when I woke up from my coma unable to speak due to my tracheostomy.

I immediately began mouthing words. But more often than not, even with my exaggerated mouth motions, I was misunderstood. I became adept at mime. I traced words on my bedsheet. In short, I did everything I could think of to communicate. Yet too often, it was just not enough.

Even after I gained the ability to speak roughly in short, barely audible whispers when the cuff in my trach was deflated, my speech was so difficult to understand that it was often no better than complete silence. (It's a long story that I will write about in a future post.)

My inability to speak was a particular problem because I was often in a lot of pain. I simply couldn't communicate what would make me feel more comfortable.

Because I had a pressure ulcer--also known a bedsore--from my six-week coma, CNAs would shift my position every hour or two. They did this by propping me up with pillows. At first it would feel okay, but soon I would start cramping up from the awkward position my muscles were forced into. I tried to indicate with arm movements the pillow position I thought might relieve the pain. But because I couldn't speak, they frequently couldn't understand what I was trying to suggest. This, understandably made me feel incredibly frustrated.

One time, as pain shot through my hip and thigh, I tried yet again to indicate where to place the pillows. The CNA placed the pillows in exactly the right spot...to increase the pain. As usual, it didn't hurt at first, but the pain soon became unbearable. I pressed the call button, and when she returned, I attempted to indicate how I could be made more comfortable.

She tried again. The position wasn't what I was thinking of. Even though didn't think it was right, I decided to give a shot. And speaking of shots, that's what the pain soon did through my body. I didn't want to complain right away, so I waited, hoping that the pain would eventually subside, Instead, it grew and grew until I couldn't stand it any longer. I pressed the button yet again.

"Yes?" the CNA said with a sigh when she showed up minutes later.

Suddenly, an inspirations struck. I laid my left hand flat, held the pointed index finger and thumb on my right hand together, then mimed squiggling above the left hand. In other words, I was attempting to get her to understand that I wanted to write down a note.

"Do you want me to change you?" she asked.

I shook my head.

"I want a pen and paper." I repeated the pantomime.

"You want to be turned?"

I shook my head vigorously. Slowly, I mouthed, "Pen and paper," annunciating and exaggerating every syllable, as I performed the scribbling motions.

"Your arm hurts?" she guessed.

"NO!" I mouthed. "P-e-n a-n-d p-a-p-e-r," I said, drawing out the words. I drew my imaginary pen across my mock paper once again.

My loved ones had a rotating schedule of visitation, and it was Joella's shift. "You want a pain pill?" she hazarded.

I shook my head so hard that I felt dizzy. "Pen and paper! Pen and paper!" I said. I traced the words on my bedsheet for good measure, substituting an ampersand for the and.

"Let me get the nurse," the CNA said. She was obviously feeling almost as exasperated as I was.

 Several minutes later, she brought back a nurse.

"What seems to be the problem?" the nurse asked.

I held the invisible pen between my fingers and mimed a cursive note on my flat palm yet again.

"Do you need to be changed?"

"P-e-n a-n-d p-a-p-e-r! P-e-n a-n-d p-a-p-e-r! P-e-n a-n-d p-a-p-e-r!"

"It's okay. Calm down."

I decided to try a different tack. I air wrote without my imaginary paper while I mouthed, "W-r-i-t-e! W-r-i-t-e! W-r-i-t-e!"

"You want to be turned?"

"Argh!!!!!!" I said, or rather tried to say. It was kind of hard to transmit via mouthing.

"I'll go find someone," Joella said, standing up.

I smiled and gave her a nod of thanks.

She returned with Ricardo, the head respiratory therapist on duty.

I returned to pretending to write on my hand/paper. "P-e-n a-n-d p-a-p-e-r! P-e-n a-n-d p-a-p-e-r!"

Ricardo's eyebrows drew together. "I'm not sure...."

I decided to switch to air writing. "W-r-i-t-e! W-r-i-t-e! W-r-i-t-e!"

He thought for a moment. "Do you want to something to write with?"

I nodded so vigorously that the room continued bouncing even when I was finished.

Ricardo left to continue his rounds, and in a few minutes, the CNA handed me a pen and a piece of paper. The wheeled bed tray became my desk. My hands were still barely functional, so I balanced the pen between my fingers awkwardly as I roughly scratched down my thoughts. I kept misforming letters, so I was continually crossing out words.

In the end, the resulting scribbles looked like they had been written by a first grader. But finally, I had the power of the pen.


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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.