Thursday, December 24, 2015

SfMCR: My Voice, Amputated

Though my trach looked awkward, it didn't hurt, But the inability to speak was truly painful.

I have a habit of thinking out loud. Normally, it just makes me seem a little crazy, or annoying, or both. But when, out of habit, I spoke to myself in the ICU, I suddenly realized that I could whisper roughly for the first time since my awakening.

I had been escorted back to ICU from my first nursing home, All Saints Healthcare, via sirened limo to repair my hemorrhaging gastric tube incision. Once I arrived it was Old Home Week, as the medical personnel who had taken care of me during the six weeks of my coma filed in, one by one, to tell me how good I looked. By that they meant, I didn't look like I was a corpse lying in state.

I had spoken during a lull in the parade.

"Am I really talki...?" I tried again, losing gas toward the end. Nope, I wasn't imagining it. I had actually produced sound, despite my tracheostomy. I was, as you can imagine, overjoyed. Being unable to talk was torture for a talkative person like me.

I thought I remembered that some people gain enough mastery to speak despite their trachs, and I figured I had thankfully gained this this ability early.

Over the next few days, my barely audible (and often incomprehensible) speech slowly improved. It was exhausting to produce the sound, taking all my might to force the air out. I could rarely complete a sentence before I ran out of air. This problem was compounded my warp-speed speaking style, which I have difficulty controlling.

Because of this, I still had to resort to mime, exaggerated mouth movements, tracing words on my bedsheet, and all the other silent means of expression I had been employing. But this slight ability to speak nonetheless remained a huge advance for me. Surely, with enough practice, I would eventually get good enough at it to fully regain my ability to communicate.

My hemorrhaging stanched, the hospital prepared to transfer me to my new nursing home, Country Villa Sheraton, which didn't have an opening until then.

A respiratory therapist on his rounds walked into my room. Like all the RTs did, he poked around my trach to inspect it. "Oh, the cuff is deflated," he remarked. "Don't worry, I'll fix it." He then reached into his pocket, then did something to my trach I couldn't see.

I smiled and gave him a nod of thanks as he started to leave.

I had gotten into the habit of deliberately talking to myself to improve my awkward speech.

Nothing came out.

I tried again.

Not even a squeak.

Whatever he had done to me, he had stolen my voice.

Postscript: After I was transferred to Country Villa, I was eager for Keith to inform them about my lost speaking ability. Ricardo, the supervising RT for the afternoon shift, reached into his pocket, then fiddled with my trach.

"Try to say something," said Ricardo.

I was surprised that it could be that simple. I paused a second while I tried to think of what to say. "Can I talk again?" I weakly croaked.

A big smile spread across my face. "Thank you! Thank you! Thank you!"

My trach had a kind of dam called a cuff that prevents air from leaking around the air tube. When deflated, it allows air to be stolen for speech. Cuffs are often deliberated deflated for this reason. In my case, the cuff had become deflated accidentally, but it hadn't been noticed until that RT checked my trach. Even though being silenced felt like an amputation, he was just doing his job when he took my voice away,

Later Ricardo took away my voice again. And again, and again. But that's another story.

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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.