Wednesday, February 10, 2016

SfMCR: Silenced again

This photo was taken weeks later, when I was being trained to sit up in a wheelchair for extended periods. The ball was for physical therapy.
I had been ecstatic when I found I could talk a little after I had returned to the hospital to have my hemorrhaging gastric tube incision repaired. The transfer to the hospital probably wasn't coincidental to the newfound speaking ability. In the process, the deflation of my trach cuff that allowed the speech hadn't been noticed.

As hard as it was to produce comprehensible sound, at least I could speak again. My tracheostomy had accomplished what no person had ever managed to do before...it shut me up.

When a respiratory therapist checking my trach silenced this hard-won skill, I was devastated, as I detailed in my previous edition of Scenes from My Coma Recovery.

Four days after the surgery was completed, I left the hospital. In the meantime, we were able to secure a bed in the nursing home my mom had preferred to send me to in the first place, Country Villa Sheraton.

I was adamant that I didn't want to return to All Saints Healthcare because I felt they weren't gentle enough in their care of me. I had severely abraded skin around my private parts, a yeast infection, and a UTI. In my coma-dream, I eventually refused to be cleaned by my caregivers. But since that act of rebellion was all in my head, nothing changed.*

Country Villa had a brighter, cleaner look to it. I was excited about the better nursing home, which hadn't had any open beds when it came time for me to be transferred out of the hospital during my coma.

But mostly, I was anxious that Keith mention to someone that a respiratory therapist had prevented me from speaking. I had no idea what he had done, but I was desperate to regain my voice.

As I wrote about in the last SfMCR, Ricardo restored my voice by deflating the cuff that seals the area around the trach, keeping air from leaking around it like a dam. Trachs are often deliberately deflated to allow what is called leak talking. It's usually perfectly safe, as I had demonstrated the few days I had been doing it.

Though at that moment, Ricardo was my hero, later in the day, he turned into a villain. Before the end of his shift, he told me, "I'm going to reinflate your cuff now."

"Please don't!" I pleaded.

"What am I going to tell people when you have a complication?" said Ricardo. "You don't want to get me in trouble, do you?" He said it more playfully than defensively, but I was later warned of his excessive caution by another respiratory therapist I had grown to trust.

"Please don't!" I said again, crying piteously as he pulled the syringe from his pocket. "No..."

Ricardo plunged the syringe into the pillowy plastic bulb hanging from my trach. It inflated, and I could speak no more.

I continued to sob as he promised, "As soon as the speech therapist gives the okay, we're going to give you a speaking valve."

The next morning, when Ricardo came on his first rounds, I pointed to my trach and put my hands together in a gesture of begging prayer.

He restored my voice with a pull of a syringe. I broke out in a wide smile and said, "Thank you."

This cycle continued for several days until he finally stopped silencing me.

It was weeks before the speech therapist approved my talking and eating valve. But that only sparked new painful and frustrating dramas, as I continued to periodically lose my ability to speak.



*Keith doubts that All Saints was negligent or too rough in my personal care. He says that the CNAs had struggled to keep me clean due to my rampant diarrhea during my coma. I do admit that my skin has always been sensitive to abrasion, and that undoubtedly factored into my skin irritation. But I also remember hearing my mother muttering like a mantra, "Shithole. What a dump!" over and over again. Keith thinks this may have influenced my impression of All Saints. But if I had known I was in a Catholic nursing home (the name should've been a clue), I would've wanted to transfer anyway.

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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.