Tuesday, April 26, 2016

SfMCR: An imperfect storm

Eating dinner while still doing the sitting exercise.
My painful experience in a double-wide wheelchair was traumatic, to say the least. When a physical therapist showed up in my room the next day to see if I was ready for my exercises, I insisted they find me a small wheelchair. They dug around trying to find a child-sized one, which they couldn't locate, but I really just wanted to make sure it wasn't a large one.

After the combined physical and occupational therapy session, I was wheeled back into my room  to proceed to the sitting portion of my training. As I explained in my last Scenes from My Coma Recovery, sitting as long as possible was an important part of my rehab. Sitting sounds like simple lounging--prolonged sitting is actually considered harmful for most people--but I had been horizontal for six weeks. Without support my body flopped over like a wet noodle.

I always made sure they put the leg rests back on the wheelchair after my sessions in the "gym" because it quickly became painful to sit without my feet being supported. The supports were removed to allow me to do the exercises, and they didn't always remember to replace them after I was finished.

Once I was back in my room, I realized they had forgotten again and pointed that out to the assistant physical therapist who had wheeled me to my room. He went back to the gym and retrieved them for me. I thanked him and he left.

It wasn't long before I realized that my feet didn't quite reach the footrests. They must've given me the footrests from a larger wheelchair, I reasoned. I pressed the call button. Once the nurse reached Angel, a pudgy, good-humored, physical therapist I liked, he came and adjusted the rests a bit. But my feet still didn't reach.

He tried again, but said, "They're on the shortest setting already."

"But my feet still don't rea," I said, running out of air at the end, as usual. "They fit before."

"I'm sorry," said Angel. "They can't be adjusted anymore."

"They must be the wrong ones."

Sigh. "I'll go look."

When Angel came back, my feet still didn't reach.

"There aren't any others in the gym," he told me.

I noticed a pair of supports in the area of the room where spare equipment was stored. But when he retrieved them, they actually turned out to be extra large.

I was starting to feel worked up, my trauma from the day before still fresh on my mind.  "What am I going to do?" I began crying. "It's going to hurt."

"I'm really sorry, but there's nothing I can do. Why don't I get you a pillow?"

I shook my head violently, remembering how the pillows the day before only made things worse. "It's going to hurt."

By this time, Joella was there on her regular visiting shift. She checked the settings herself. "They're on the shortest settings now," she confirmed.

"They fit before," I repeated. "Please try again."

Angel fiddled with the footrests again. This went around and around, until Joella got so exasperated that she threw her cell phone on the hard tile floor, breaking it.

About this time, you're thinking I was being unreasonable. And you would be right. But you have to remember that I was on a high dose of prednisone, which plays havoc with your emotions. Add that to my trauma the day before and the stress of my recovery.

I eventually relented and agreed to try a pillow. I really didn't want to be making such a fuss. But my legs soon started hurting because my left foot still didn't quite reach. I shifted my position. And shifted again. And yet again. The pillow fell off the rests.

I pressed the call button once more. A CNA eventually appeared. She put a thicker pillow under my feet, but that proved to be too thick. Now the left foot fit, but my right felt jammed. Still, I decided to give it a try. It wasn't long before my legs started to hurt again.

I had the idea stuck in my mind that the original rests were still hiding in the gym somewhere. Another search, another goose egg.

This time, a different physical therapist showed up. I liked him, too, and I was embarrassed to be putting up such a fuss.

"But it fit before."

"You were probably sat too far back in the chair." He adjusted my back pillow, which was a thin pillow brought to me from our home. It was quite comfortable. Indeed, I continued to use it with the wheelchair after I left the nursing home, and I'm sitting against it now. But because it wasn't designed for wheelchairs, it had a tendency to shift.

The new position was a bit better, yet my legs still didn't quite sit flat on the rests. But he helped shift my position in the seat (I was so weak that I could only help slightly).

Ah, problem solved.

The moral of the story? Being in a nursing home is stressful. Compounded with pain, trauma, and helplessness, with a heaping dose of a medicine that is notorious for messing with your emotions, it makes for a volatile situation.
My elbow is resting on the thin pillow from home.

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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.