Tuesday, December 29, 2015

Git along little doggie

At the other end of that leash stood Keith's mom Joella.
Rehab walking Tumblrs: Paramount Ranch

This Sunday, we hiked the famous Paramount Ranch, which is now a national park. There were no gun fights, but in addition to the Western sets, we hiked through rock outcroppings and desert scrub that could've been scouted by cinematographers trying to set the scene.

While we were out of place in a Nineteenth Century Western town, we weren't the only ones who didn't belong in that setting. Just before we headed home, Joella spotted these birds perching above her resting spot. Call them the Parrots of Paramount, Polly want a cameo?

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.

Tuesday, December 22, 2015

My Personal War on Christmas

The Secular Spectrum: My Personal War on Christmas

'Tis the season for conflicted feelings for nonbelievers. But after I started dating the Christian-raised Keith, my attitudes softened about Christmas. I have to admit, I even began to enjoy the Christmas music he played around the holidays, though Keith was also careful to include some Hanukkah music in the mix. My favorite was the klezmer-inflected versions of the songs Woody Guthrie wrote for Arlo and his sister. Keith even bought my very first menorah!

Monday, December 21, 2015

I think I can, I think I can....

Reseda is peeking through the Santa Monica Mounains

My latest rehab hiking picsTumblrs

My legs are still sore from our 2.6 mile hike up the mountain trails of Topanga State Park, through terrain Keith worried might be too tough for me. But the reward was magnificent vistas of the Santa Monica Mountains, and the knowledge that I was indeed strong enough to hike it.

My recovery has indeed been a difficult climb. But as Keith remarked, I couldn't have done this before my coma. I replied, I wouldn't have even tried.

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.

This post is

Thursday, December 17, 2015

Because the Bible Tells Me So

The Secular SpectrumBecause the Bible Tells Me So

Some kids feel anxious about their first day in junior high; others are excited. I was a little of both. I had the usual worries about finding new friends, the new teachers, the schoolwork, etc., but I was also eager to be able to stop praying before lunch. I was sure once I left my elementary school, the praying would stop.

This was a major source of anxiety for me as a secular child. I was picked on and/or beaten up on a daily basis, so I couldn't afford for the other kids to know that I wasn't really reciting the words to our lunchtime prayer. So, I mouthed the words, sneaking glances to see if anyone seemed to notice that no sound was coming from my lips. Fortunately, I was never found out.

But in my new junior high homeroom, I chose a desk, put down my book bag, and as I settled into the chair, the teacher asked who wanted to read their favorite passage from the bible.

My heart sank.

I sunk down in the chair and tried to remain invisible. Another girl raised her hand. After the teacher handed her the bible, the girl read. I heaved a sigh of relief.

The same scene repeated every school day until my mother and I moved to LA.

Friday, December 11, 2015


In medical school doctors are taught, "When you hear hoofbeats, think of horses not zebras." It means that you should first consider more common diagnoses when confronted with symptoms. That makes sense...unless they're actually dealing with a zebra. Sometimes when doctors see zebras they only hear horses.

I've confronted this phenomenon repeatedly, as well as another common issue, the fad diagnosis. My two-year "walking pneumonia" when I was in my early teens was misdiagnosed as anorexia, which was first becoming widely publicized. I was still in the normal weight range, albeit near the bottom of the percentile. When the pediatrician said that, my mother told the pediatrician that I ate fine, though I had always had a small appetite. I'm actually notorious for my sweet tooth, yet I have a metabolism that people would sell their souls for (if souls actually existed). But the doctor couldn't figure out the cause of my persistent pneumonia, so he trotted out anorexia as the diagnosis.

It was allergies for a while until that too was ruled out. I was eventually referred to the pulmonary department. After a lung biopsy, they discovered that my lungs had been scarred by the mysterious virus that struck me when I was 11. Yes, my health has been bad for that long.

Years later, I found to my horror that I matched almost all of a long list of potential symptoms of dermatomyositis (DM) down to the last detail--included the disgusting photos of the characteristic Gottron's papules. Yet the dermatologist I saw laughed at the suggestion that I might have DM. He instead gave me a laundry list of skin disease diagnoses. Each area of rash had a different one. I forgot to ask him why I would suddenly develop these separate condition all over my body at the same time.

My muscles continued to weaken, and I was referred to a rheumatologist. She told me I was smart for identifying DM as a likely cause of my constellation of symptoms. But she thought DM was the second most likely diagnosis, behind the far more common psoriatic arthritis. She said if I had to have one, she preferred it to be psoriatic arthritis. After all my research into DM, I knew why. But when I returned home and looked up psoriatic arthritis, my heart sank. It didn't really fit my symptoms at all. The blood tests she ordered showed that I almost certainly had DM.

I was sent back to the laughing dermatologist for a skin biopsy to confirm the diagnosis. The dermatologist looked at my hands and said, "Now it looks like classic Gottron's papules." Actually, the rash had improved quite a bit by this time due to my treatment. He was obviously weaselling out of his cavalier dismissal of the possibility that I might be have dermatomyositis.

When I came down with Legionnaires' disease--thanks to the increased prednisone dose prescribed by that same dermatologist--and I suffered a series of strokes on both sides of my brain, which caused me to fall into deep coma, my doctors played the odds and decided I was a hopeless basket case. This is a related phenomenon to zebraitis. Most people in my situation never wake up, and if they do, they're left irreparably brain damaged. No need to listen to the reports of their loved ones of improving awareness. They all say that, doctors tell themselves. Just continue jotting down "poor prognosis" and move on to the next patient.

The problem with playing the odds with patients is that some will defy expectation or turn out to be a zebra, after all. Well, have a zebra, which is common enough that zebra is also a term for those unlikely diagnoses nonetheless suffered by a small minority of patients, like DM. But who's to tell which is which if you don't look?

I really wanted to be told I didn't have DM, yet a voice in my head told me that there were too many similarities with my symptoms to be a coincidence. That's why I kept bringing up the possibility to different doctors. And unfortunately, it turned out that I did have a zebra after all. My creatine kinase test--the one that diagnosed my DM--tested in the normal range when I first went to my primary care physician. I guess it was too soon. If the dermatologist had recognized my "classic Gottron's papules," treatment would've been started before the muscle damage had progressed. Or, if I had continued being tested, the muscle damage wouldn't have become so severe that I think I'm still suffering from it.

And, yes, it was most likely that I wouldn't recover from the coma. But because they were convinced that I wouldn't, they refused me therapy that could've hastened my awakening and reduced my recovery time. Every time I was moved or stimulated--for the MRI, GI tube insertion, or the move to my first nursing home--my awareness improved.

This is why I'm so eager for the development of bedside covert awareness detection using EEGs. There's no cure for zebraitis, but if it's cheap enough, doctor will have no excuse not to test the comatose. At the very least, they would be able to tell the patient's loved ones whether they're really aware or not.

When doctors play the odds sometimes it's the patients who lose.

Thursday, December 10, 2015

Riding the Hippocampus Hobby-Horse with Santa and the Coca-Cola Polar Bears

The Secular SpectrumRiding the Hippocampus Hobby-Horse with Santa and the Coca-Cola Polar Bears

I didn't realize that everyone wasn't sometimes aware when they were dreaming until several years ago, when I read an article about lucid dreaming. Later, as I was researching my Skeptical Inquirer article "Covert Cognition: My So-Called Near-Death Experience," I learned that according to the REM intrusion theory, my lucid dreaming meant I was far more likely to have a near-death experience.

I even lucid dreamed during my NDE. I noticed that my "new" boyfriend looked a lot like Keith--even down to the klugey repair of his glasses he was forced to make when they broke in Sicily. But Keith didn't have a full beard, so he couldn't be the person telling me all about his plans for us when I was better. I went through various names for this new boyfriend (which meant that I thought it was an ordinary dream). I finally settled on Ricardo, for some reason. Perhaps the name was inspired by Ricardo Montalban. I have no idea why, but I did note that he seemed to be exceedingly polite. He kept saying "Thank you, sir" to people. Oddly enough, Keith does that too, though I never really noticed it before my coma-dream.

Later, after my awakening, I was greeted by a respiratory therapist at my new nursing home. His name was Ricardo. Pure coincidence, of course, but weird nonetheless.

Wednesday, December 9, 2015

Walking While Others Fly

An osprey soars overhead.
For anyone interested in following my rehab progress, from now on I'm going to be posting links to the Tumblrs of my walking pics. Once a week, Keith and I walk through beautiful gardens and nature reserves. Sometimes the photos show me climbing steep inclines and uneven terrain, more hikes than walks. And they're often filled with wildlife, such as last Sunday's walk at the Sepulveda Basin Wildlife Reserve.

Sepulveda is one of our favorite places to walk. It's part of the Pacific Flyway, and as such, it's usually chock-a-block with birders. And in the case of last Sunday, as we walked with Keith's mom Joella, the reserve was carpeted with large birds of different stripes...or spots.

Here's the linkhttp://comachameleon2013.tumblr.com/

PS: The ground is perfectly flat at Sepulveda, but the hiking sticks are basically double canes which allow my to walk farther before I grow tired.

Friday, December 4, 2015

SfMCR*: After the Awakening

This is the only photo taken of me at All Saints Healthcare. It was snapped on the day of my transfer, five days before my awakening.
I awoke from a dream of man-eating office machinery right out of the Twilight Zone, only to learn that I had actually been re-enacting Sleeping Beauty. I've told the story of the first moments after my awakening before, but the rest of the day was almost as surreal.

A female doctor walked in to evaluate the state of my cognition. Since I couldn't talk, all she could do was give me a multiple choice quiz. Which of these is the current president: Bill Clinton, George W. Bush, or Barack Obama? This was my first inkling that brain damage was still suspected. I shook my head on the first two and nodded on the last. I made a mental note to make sure everyone could tell that I was completely there.

My mom had explained that my doctors had written me off as a basket case. "The nurses hinting that I should let them pull the plug," she added in her typical blunt manner. She also stated that I had been a quadriplegic. Though I could barely lift my arms and legs, I did have a slight amount of movement. This didn't make any sense to me. My spinal cord had obviously not been damaged. How could this be? This statement only added to my perplexity. [She still says this. I think she bases her conclusion on my lack of movement during my coma. As a hyperactive person, I had always fidgeted and moved while awake. Though I was covertly aware during my coma, I wasn't fully awake. If I had been conscious, but paralyzed, I would've been in a lock-in state, not vegetative.] 

Though I was sure I had no signs of brain damage, confusion reigned as I tried to make sense of the mish mash of the details that trickled out about my illness.

Soon, a priest appeared and told me, "God is good," as I've written about before. My mom, who is also an atheist, was trying to be polite when she allowed him to come to my side. I, in turn, acquiesced with a slight nod of my head when he as asked me if he could pray for me. It made me feel extremely uncomfortable. Thankfully, he soon left.

My mother was obviously excited at my awakening, but sometimes she talks so much that details can get buried in the mix. This only added to my confusion. I was already getting an inkling of what my loved ones had gone through, however. My mom told me there had been a constant vigil by my side, a fact which a nurse confirmed. Keith would be coming by after work, my mom informed me. I couldn't wait for him to get there. I knew he would be happy.

When Keith arrived, I could hear the joy and relief in his voice. I only wish I could've seen his expression; I'm extremely nearsighted and I didn't have my contacts or glasses. A vegetable has no need for corrective lenses. Keith vowed to bring my glasses to me the next day. Though I couldn't see fine details, I could make out the breadth of his smile.

He told me that all my friends on Friends of the Mountain Dulcimer were rooting for me, and there was a separate cheering section on Facebook. "I can't wait to tell everyone you're back. Completely back." The relief in his voice was obvious.

Meanwhile, I mugged like a silent movie actor, trying to seem as vibrant and aware as possible. I did my best to display my sense of humor, through exaggerated facial expressions, comically timed looks, and a few mouthed words, which were often misunderstood. I wanted everyone to know that I was still completely me. Given my limited comic palette, I was at a considerable disadvantage in this endeavor. My humor is usually verbal.

As I continued to overemphasize my thereness, I stayed so animated that I quickly became exhausted. Yet I kept it up, anyway. I had to make sure everyone knew my mind was undamaged. Keith clearly couldn't get over the fact that my mind was still clearly intact. He had heard all the same discouraging things from my doctors.

And all the time, I struggled to piece together the picture of what had happened. Had I been in a coma six months or six weeks? [I think the confusion stemmed from my mother rounding up to two months, while Keith referred to it as the more precise six weeks. My mind conflated the two.] Why were objects labeled as belonging to "All Saints," when I had spent my coma in the Kaiser Panorama City hospital? No one thought to inform me (because they already knew) that I had been transferred to a nursing home only five days before my awakening. [As I've referred to repeatedly, it was the very activity involved with that move which sparked my awakening.]

Eventually, Keith had to go home and scarf down a quick dinner, then catch a few hours sleep...as he'd been doing for the previous six weeks.

I felt all but dead, wrung out by my forced activity in my coma-weakened state. But I awoke the next morning. And the next morning. And the following morning as well.

*SfMCR stands for Scenes from My Coma Recovery. This post is part of a continuing series of vignettes from my recovery.

Wednesday, December 2, 2015

Myth-Taken by Santa

Myth-Taken by Santa

"Santa is a fake!" I said to my mother, outraged.

Those are the words I uttered to my mother after I had noticed the gap between the mall Santa's beard and his face. My mom reports that she could see the little wheels turning in my head as I thought about the implications,

"And all the Santas, in all the malls, they're all fake too!" I added.

Keith wondered how many malls I could've seen Santa in. But as my mom and I cruised through Miami, we undoubtedly passed countless malls, all with their own Santas.

I was indignant about this fraud, though my mom had never intended me to believe in Santa Claus in the first place.

Years later, I eventually convinced my mom to give up her own myth--that God might exist.

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Coma Girl

Coma Girl

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.