My "miraculous" recovery from a 6-week coma through a skeptical and humanist lens, written by a writer published by Skeptical Inquirer and Free Inquiry. When I awoke, I could barely raise my head, and it has been a hard road back. I also aim to educate the public about covert cognition. Too many people who are still conscious are being dismissed as hopeless vegetables, as I was. As many as one in five people with consciousness disorders have covert cognition. For them, there is still hope.
Thursday, April 28, 2016
Holy Moses?
The Secular Spectrum: Holy Moses?
I was already an atheist, but I had begun identifying more and more with my Jewish heritage. So one year, my agnostic mother and I loaded up our grocery cart with Jewish foods from the ethnic foods aisle in preparation for a secular Passover. We also picked up a Haggadah, which I barely glanced after we took it home.
To be honest, it wasn't really a Passover seder. We dispensed with all the rituals and went straight for the food.
As I write about in the SecSpec post, I decided that the creamed pickled herring might be useful in case of accidental ingestion of a poison. The borscht, I loaded with more and more sour cream--trying to make it edible--until it looked like Pepto Bismol. But I thought the honey cake and cookies were pretty good--no surprise from someone with such a sweet tooth.
It wasn't really a Passover seder at all, and we never tried it again. Since I didn't grow up with much Jewish culture, my Jewish identity would have to come from within.
And if I never look at another creamed pickled herring, I'll die a happy person.
Tuesday, April 26, 2016
SfMCR: An imperfect storm
Eating dinner while still doing the sitting exercise. |
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 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. |
Wednesday, April 20, 2016
These shoes weren't made for walking
The photo op area outside the Magic Castle. |
It's been a wobbly recovery, much the way I felt wearing the dressy pumps, with 1 1/2 inch heels, last Sunday during our birthday celebration at the Magic Castle. Even before the coma, I didn't tend to wear high heels, and those are the highest-heeled shoes I own, but also the dressiest. They have a squarish heel, but I still felt unsteady enough in them to bring my Hurrycane.
I guess you could call it a crutch.
I hadn't worn the shoes since my coma, but the strict dress code at the Magic Castle prohibits sandals, and the only other pair of non-sandal dressy shoes I own have a lower, but wedge-shaped heel which kept making my feet go sideways.
Not good.
Neither were ideal shoes for someone who still wobbles slightly due to lingering vertigo and a slightly weak right leg from stroke damage. Though I've taken to leaving my cane at home because I don't generally need it anymore, I felt it would be wise to take it with me this time.
We were visiting the Magic Castle at the invitation of Norman and Madelyn Gilbreath. Norman has been a member since before it was the Magic Castle. He's a magician who invented his very own magic principle that has its own Wikipedia page.
He gave us a private demonstration that was loads of fun.
I won't give you a blow-by-blow account of our delightful evening, but suffice it to say that it was the funnest birthday celebration of my adult life. Well, I have to give at least one supercool detail: We ate a private dinner where they hold tongue-in-cheek Victorian-style seances to contact Harry Houdini, in a room lined with priceless Houdini memorabilia. If only they allowed photos inside the Magic Castle!
The shoes are of glittery gold, and Madelyn said they looked like fairy shoes. They're the most expensive shoes I've ever owned--$80!--but they were originally cost much more because I picked them up these Stuart Weitzman pumps on clearance at Nordstrom Rack (probably because they didn't have a lot of takers who wore size 5). I didn't buy them because of their heels, but despite them. As I've always said, wearing high heels would only make me a very short person in high heels, with a bad back and aching feet. But they are lovely.
Still, I'm no Carrie Bradshaw, and this post isn't about shoes. It's about my confidence that my fairy shoes wouldn't launch me into the air as I climbed up and down the stairs repeatedly in the unfortunately not-handicapped-adaptable Magic Castle.
As we ate in the coolest room ever, I describe how in the nursing home, at first, the physical therapists counted as steps every time I moved my feet forward a tiny fraction of an inch. Two physical therapists had to support my weight for that, and even when I could make a few actual steps I still needed them in the beginning.
My first unsupported steps. As you can see, I was barely lifting my feet. |
It was a technique John Silva learned at Rancho Los Amigos. Norman said that he had an aunt who
My first outside steps with John Silva. |
I went on to recount how I couldn't stand, but eventually found that I could use a special walker with arm braces (see above). I would throw myself at the braces and grab on for dear life.
But if John hadn't pushed me as fast as he did, I wouldn't have been able to go home in time to save my Kaiser health insurance.
The "fairy shoes" that carried me from from that walker to the Magic Castle were not infused with pixie dust, but determination and rehab. I felt unsteady, but I had faith that I was strong enough to wear those somewhat high-heeled pumps, with the slippery leather soles, without falling on my face.
The last thing I needed was to set back my recovery in celebration of the third birthday I wasn't expected to see.
Admittedly, this step in my recovery pales in comparison to the sequential steps I took on the long staircase in the Magic Mountain. Still, this is another advance on the road to normalcy.
The ruby slippers in the classic movie version of The Wizard of Oz were silver in the books, but not gold in either. Yet I was easing on down the yellow brick road to recovery, in impractical designer shoes I took off the moment I got home.
As pretty as they are, I prefer comfortable.
Tuesday, April 19, 2016
Your Fate is in Your Hands (except when it isn't)
The Secular Spectrum: Your Fate is in Your Hands (except when it isn't)
Today is my birthday, the third I wasn't supposed to live to celebrate. That is a present all in itself. But after my coma, I was given another gift--a do-over and chance to gain many more years.
That's because my recovery has goosed me into reforming my life and shedding many of my unhealthful and downright harmful habits. Because of that, I will probably live many years longer.
Though I already knew this, my illness(es) impressed on me the fact that you never know what monkeywrench life might throw at you. Though you have no control over that, you owe it to yourself and your loved ones to control what you can.
That's why I wrote my latest SecSpec post today instead of staying up into the wee hours of the morning to write it, just so readers on the East Coast could see it in the morning. When Keith stopped making my breakfast for me, he worried that I might start backsliding into my old bad sleeping habits.
He needn't have worried. Nowaday, I'm frequently the one who starts getting ready for bed first. I'm obsessed with getting enough sleep.
Maybe it was that six-week nap that did it....
Friday, April 15, 2016
And now for something competely dfferent
The enormous jacket wasn't a fashion statement. Keith keeps it in the car, and we were woefully unprepared for a hike at an elevation of 4000 feet. |
Just as my recovery taken me on a long, tortuous path, so went the search on Sunday for a trail Keith once hiked.
Before we knew it, we had overshot the mark by at forty-five miles. But also like my recovery, we found our journey took us along a pleasantly unexpected path.
We wound up far from our usual dry chaparral environs to a place that seemed like a different world. Here, we found pines and lichen-encrusted branches instead of sparse live oaks and sagebrush (which we nonetheless love).
But like our parched landscape, fire had touched this mountain forest, as well. Yet--and here's the final recovery analogy--the fire-cleared areas were already healing, with baby pines growing where their parents had been felled.
Since we've never walked in a natural pine forest before, I've dug out some pics from early garden walks. The first was taken on our first visit to the Japanese Garden on 12-8-13, in front of a very non-natural pine--a large bonzai.
The second was taken on at the LA County Arboretum on 1-4-14, also on our first visit.
The third pic, was taken at Descanso Gardens on 12-22-13. Do I even have to mention what visit it was?
Thursday, April 14, 2016
Unnatural Selection
No, he isn't saying pull my finger. |
The Secular Spectrum: Unnatural Selection
I admit that I still have trouble understanding creationists. Having been raised without religion, I have enough difficulty relating to believers in the first place.
But even though I think theistic evolutionists like Francis Collins have partitioned the scientist in their brains from their faith, this form of contortionism has a long history in evolutionary thought. And it's certainly preferable to creationists and its intelligent design offshoot.
When I think of those two groups of evolutionary denialists, I imagine them sticking their fingers in their ears and saying la la la la la whenever they think about archaeopteryx's or read of a new hominin like Homo naledi.
It's a very small world they live in inside that contradictory and morally despicable book.
Friday, April 8, 2016
Hiking where the Chumash gathered
The steps down into what we think is a recreation of a sweat lodge were steep enough that I needed to give myself a boost by partly pulling myself. |
In May of 2015, all I could do was look on from the outside. |
The Chumash Indian Museum manages the park, and they also built a recreated Chumash village,
which looks like it receives a regular stream of schoolchildren on outings. On our first outing to the park, I brought both my hiking sticks and my Hurrycane. On the way up, I used the cane, and as an experiment, on the way back I used the sticks.
Even though I was already tired, I found I could travel much farther with less energy with the hiking sticks. Thereafter, I began using the hiking sticks exclusively.
Even so, I was so tired that I lunged for the first
bench we found. This time, it was Joella's turn to lust for the chance to rest. I've gotten so strong that I barely noticed the incline that had so exhausted me on the first visit. But it didn't escape Joella's notice
My welcome rest in 2015. |
But we knew she would love the park's magnificent oaks, and we were right.
As usual, after the portion of our walk with Joella and a nice picnic, we headed off to a more vigorous hike. There we hiked in an oak forest that looked like it had barely been altered since the Chumash roamed it. Well, besides the road, of course.
You could almost imagine the Chumash gathering the acorns and grinding them into a mash that they would leach of its tannins and turn into a flour.
In fact, don't those flat rocks look like grinding rocks? No, it's probably our imagination running away with us. Perhaps they were caused by erosion instead.
But I couldn't get the rock out of my mind. When we returned to Joella, I slipped into the Chumash Indian Museum to ask an employee about the rocks.
Yes, she told me. Those holes were made by the Chumash.
Wow, very cool!
All told, we hiked 2.74 miles though the former home of the Chumash, who gathering acorns blissfully unaware that they would be one day shunted off their land into reservations.
The Chumash now own a casino, while a small museum pays tribute to their nearly forgotten culture.
On that sad note, here's a bonus pic of a huge, burned-out tree smack dab in the middle of the parking lot. It's hollowed out, yet it still survives, much like the Chumash.
Thursday, April 7, 2016
Glimpsing Truth through the Blinders of Religion
The Secular Spectrum: Glimpsing Truth through the Blinders of Religion
I've been a fan of paleontology since my childhood days as a future paleontologist. The first place I wanted to see when I moved to LA with my mom when I was twelve was the La Brea Tar Pits.
Georges Cuvier was intimately involved with many of the species in the Tar Pits: mammoths, mastodons, and giant ground sloths (though not Megatherium).
Given my longstanding interests, I can't resist posts that link my favorite subjects, evolution, paleontology, history, and secularism--it's four great tastes in one!
A Columbian mammoth at the Tar Pits. |
Friday, April 1, 2016
SfMCR: A pain in the ass...literally
Sitting in a normal-size wheelchair. |
Part of my physical therapy in the nursing home involved sitting. That's it. Well, it was sitting in a wheelchair. I wasn't given a seat cushion at first because they didn't have enough to go around. (John Silva eventually scrounged one up for me.) Without a pad, there's nothing but a vinyl sling below your butt.
So what, you may be thinking, director's chairs are fairly comfortable. Try sitting on one not for an hour or two, but all day. I wasn't yet strong enough to sit up that long, but I also had general pain that I attribute to my body getting used to being animate after my awakening. Residual muscle pain from my dermatomyositis might've contributed to it, as well. And then there was the bedsore just below the base of my spine.
But considering that my body wasn't up to sitting for that long, it wasn't that bad.
When an assistant physical therapist came into my room to take me to physical therapy and wheeled
in a double-wide wheelchair, obviously meant for the morbidly obese, I was merely amused. After all, my weight had dwindled under my liquid diet during my coma and many weeks afterward. I looked like a concentration camp survivor, my bones sticking out of my skin, creating pressure points.
After my physical and occupational therapy session ended, I was wheeled back into my room to perform the second part of my therapy--the sitting. The goal was to sit as long as I could to retrain my body to remain upright and get used to sitting in a chair.
The physical therapist is supposed to make sure you have the call button within reach before leaving. But they kept forgetting, and this time was no exception.
It wasn't long before my hips and butt started to ache. Then the shooting pains began, followed by pulsing waves. When I couldn't take it any longer, I started to pound on my wheelchair for someone to help me. No one came. As the pain continued to increase, I began to weep.
"I need some help," I kept saying, but this was after my speaking valve had been carelessly trashed, so what came out was barely a whisper.
Finally, someone passed in the hall and I called to her, pounding on the arm of my wheelchair to catch her attention.
She was a nurse. "What's the problem?" she asked.
"The wheelchair is too big for m." I ran out of air, as usual. "It hurts." I sniffled. "It hurts!"
"I'm sorry you're in pain. Where does it hurt?"
I pointed to my right hip and my butt.
"What would you like me to do to help you?"
"Give me another wheelchai." I took a breath. "Or put me back in be."
"I can't do that. I'll send for a CNA."
"Thank you." She put a box of Kleenex in my lap before she left.
I daubed my nose as I waited. And I waited some more, as lightning bolts of pain shot through my right hip.
When the CNA finally arrived, she propped a pillow under me. I was really determined to regain my lost abilities, so I didn't want to give up on my wheelchair training. It was worth a try.
But I continued to list in the cavernous depths of that enormous wheelchair. What's worse, the CNA also forgot to give me the call button. The tears started flowing again, I banged on the wheelchair, calling as best I could, as my panic increased.
When someone finally came, she tried yet another arrangement of pillows. At least this time, the CNA remembered to give me the call button, which before long I was forced to press.
"What is it now?" the nurse asked.
I reached for a Kleenex to wipe my running nose. "Please put me back in be..." Breath. "It hurts."
"I'll go get someone to help you."
Not again!
Another looooong wait followed.
But when a CNA finally arrived, she wasn't trained in transferring patience and she had to get someone to help.
I thanked them profusely after they slid me into bed by lifting the sheet underneath me. Finally, I was in bed, exhausted, still in pain, and emotionally wrung out.
The next day, I insisted the assistant physical therapist give me a small wheelchair. Still, a painful drama ensued when they left me in the wheelchair yet again.
But that's another story.
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About Me
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.