A Post Mortem interview

I was surprised that they didn't use a coma picture. It's not a bad shot, despite my Frieda Kahlo eyebrows. My hands were still too weak to tweeze them. The computer was basically a prop because my hands weren't yet strong enough for typing, either. Keith was testing to see if I could stand the weight.

No, the interview wasn't conducted at a seance. Simon Davis is a fellow skeptic, and since I survived, no medium was needed, at any rate. I am of course grateful that this was the only post mortem after the coma. I was certainly happy to keep my near-death experience as far away from the real thing as possible. With no further ado, here is the in the VICE Post Mortem column featuring my interview: Being in a coma is like one long lucid dream.

To be honest, I was surprised that they didn't use any of my coma pictures, considering it's a column about death and all things morbid. Maybe that would've made it look sensationalistic, instead of being about the fascinating aspects of my coma experience. I do wish the column had focused more on covert cognition, as the Washington Post article had. But I understand. Simon and his editor naturally concentrated on the aspects of my coma-dream that people are frequently drawn to. I would've been fascinated by it as well if it hadn't happened to me. Actually, I'm still intrigued by it.

But did I have any problems with the column? Well, I would quibble with the characterization of comas being like one long lucid dream. They were for me, but not necessarily for everyone else. Simon did a good job of presenting Kevin Nelson's REM intrusion theory. And according to that theory, my long-standing REM intrusion made it 60% more likely that I would have a near-death experience. But people who have other kinds--like sleep paralysis--will not edit their NDE the way I did because my form is lucid dreaming. I edit my ordinary dreams sometimes, as well. It's the perfect form of REM intrusion for a writer, in fact. According the REM intrusion theory, NDEs are a kind of dream, so in someone with a different form, their NDE would manifest differently. And anyone who isn't susceptible to REM intrusion probably wouldn't have an NDE at all.

I can't say if REM intrusion is necessary for the mix of reality and dream I experienced. Certainly, it's not necessary for covert cognition to occur. Therefore, it's likely that some comatose people with covert cognition only perceive one of these. Or both, but they don't edit their coma-dreams because they're not lucid dreamers. I'm a study of one and that hardly makes for a solid hypothesis.

Still, this is a picayune issue, and I'm overall quite pleased with the column.

Interview with the vampire...er, ex-night owl

Today, Simon Davis, a fellow skeptic who writes the Post Mortem column for VICE interviewed me about my coma experience and my Skeptical Inquirer article, "Covert Cognition: My So-Called Near-Death Experience." His column focuses on death-related subjects. I did nearly die, after all. I've often joked that I came about as close to dying as you can get without actually dying. Plus, I did have a near-death experience, a subject that came up repeatedly in our conversation. Another topic that came up frequently was my coma-dream. I know that's a subject that often fascinates people. It would me, too, if it hadn't happened to me.

I thought I would be nervous, but apart from my usual ADHD-related nervous energy, I was fine. In fact, it was a lot of fun. Who doesn't like to talk about themselves?

It will be interesting to read his interview when it comes out. He's requested that I send him some photos, and I've sent him the first batch--the few pics taken while I was in the coma, plus the photo of me beside the graffiti that read, HOPE. I have to go through more so Simon's editor can pick the best.

And speaking of hope, I hope he mentions the plight of patients like me who are covertly aware, but are dismissed as hopeless vegetables. Somebody has to speak for them, because they certainly can't. The closest any have come was when they were lucky enough to be included in a covert cognition study. Scott Routley was asked by Dr. Adrian Owen if he was in pain. He answered no, using Dr. Owen's tennis/navigating familiar locations technique. Sadly, Scott died without ever regaining full consciousness. But before that, he gave hope that similar patients will someday be able to participate in their own care.

And I'm glad to know he wasn't in pain.

Minimally conscious...and it wasn't even morning

This photo was taken at All Saints Healthcare on the day the evaluation I refer to was written.

On Friday I went on an exhausting and frustrating wild goose chase through the sprawling Kaiser Permanente Panorama City Hospital campus in an attempt to request my hospital records. The complex has undergone extensive building and reorganizing, so I kept being routed to the wrong buildings. My mother figured out that I had been to all but one of them. This was complicated by my previous odyssey to obtain my hospital and nursing home records. Then, too, I was redirected repeatedly and incorrectly. When I was sent to the place where I eventually wound up requesting the records, I headed right out again because it was the same office where I had been misdirected the first time. That was eight months ago, however, and now it was the correct location. After I finally found the right office that time, I had to wait a few days to receive the records on a DVD. When I picked them up, at a cost of $15, I didn't check them right away because I only needed them for when was ready to started writing my memoir.

Eventually, I promised to send a copy to Dr. Adrian Owen to help him understand my case. As I previously mentioned, I'm going to be helping him by answering some questions about my covert cognition experience as he writes a book for the popular market. Unfortunately, when I fed the DVD into my computer, I found that I had been given the records from my 2014 Legionnaires' disease hospitalization. I don't think the fact that they were both legionella cases had anything to do with it, as rare as this bacterial infection may be. She just gave me the records from the second hospitalization in 2013, when I returned to the hospital from All Saints Healthcare, the nursing home Kaiser had transferred me to only six days before. I was back at the hospital to stop the bleeding from my gastric tube. She had also included the records from my 2014 hospitalization sequel, Legionnaires' Disease: The Revenge. Thus, the literal run-around...again. Now I'm going to have to pay that $15 fee again. Yeah, that's not fair, but it's not worth arguing about. I need those records!

The other odd thing is that the records were missing two days from my short stay at All Saints. I'm missing the day before I awoke and the day of my awakening. The first missing day is exactly two years ago today. Tomorrow is the the second anniversary of Coma Day--the day of my awakening. That's gone too.

Yup, the two most important days are missing. I'm awaiting a callback from All Saints to see if they have the records. But reviewing the records I do have gave me a bit of shock. It says that I was opening my eyes and responding to simple commands five days before Coma Day. That means that I was at that point in a minimally conscious state. That's not the surprising part; I suspected as much. However, my loved ones would've liked to have known that the doctors were now saying that my altered mental status was improving. They could see that for themselves, but until then my doctors had always pooh-poohed their observations of my increasing awareness. Indeed, the doctor who wrote these notes told Keith that I wasn't the same patient described in my medical records. In her notes, she deemed my rehab potential to be fair. That's a whole lot better than the previous predictions that I would at best be left a hopeless vegetable. This change in evaluation is due to the fact that people in minimally conscious states are far more likely to effect a full recovery. You know, like I have. I wish my loved ones had known that!

What other surprises await in the records from those two days?

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"Funny, frequently profane and adamantly atheistic"

That's what the Washington Post article called my Skeptical Inquirer article "Covert Cognition: My So-Called Near-Death Experience." True. It also labeled as grumpy my thought, when I awoke from my coma, "Goddammit, I just fell back asleep." That's another fair point, since I do indeed tend to be grumpy when I've been woken from a deep slumber. That sleep was about as deep as you can get.

At any rate, the only problem with the WaPo article was inadvertent. It called my SI article "Cover Cognition: My So-Called Near-Death Experience." No one put a sheet over my head, after all. I've been meaning to contact them to tell them about the typo.

The one thing I didn't like about the article was a comment made on it. Perhaps it's that adamant atheism, but this comment by Kathryn Wakeford irked me.

Or perhaps, the relatives knew she wasn't dying.

A wag, Chenopod, responded:

 And that she needed ice cream

That was funny. My reply was more serious.

I was expected to die. My boyfriend overheard one doctor saying to another that I wasn't a candidate for a lung transplant because they should save it for someone who has a chance. Indeed, I've often said that I was about as close to death as you can get without actually dying. 

In my article, I explained that according to the REM intrusion theory, near-death experiences are all a form of dream. I can't get into all the details here, but according to a study, as a lucid dreamer I had significantly increased chance of having an NDE. The reason I didn't see heaven or dead relatives is because I don't believe in life after death. Since I was raised without religion, I instead saw images influence by the '50s sci-fi movies I love and secular childhood influences.

I felt affronted at the suggestion that I wasn't really close to death. But her comment wasn't really about me. It was about her need to reaffirm her faith in the afterlife by believing reports of visits to Heaven during near-death experiences.

Perhaps I shouldn't have responded, but I felt like I needed to clarify the situation for others who might feel as she did. I think the other part of her thought process may have been, of course I wasn't dying because I didn't. Talk about circular logic! My dead relative knew that would be the outcome, so they stayed away. That certainly would've been something my living loved ones would've liked to have known when the doctors were telling them to prepare for the worst.

If I had been a Catholic, I would've received Last Rites. Instead, I heard Hitchhiker's Guide to the Galaxy. Incidentally, Douglas Adams was also funny, frequently profane and adamantly atheistic. Not that I'm comparing myself to him, of course.

I tend to panic.


Oh, and about that wry commentator...my boyfriend Keith often goes by Chenopod online.

Probably a coincidence.

WaPo on my CoMa (article)

Funny, frequently profane and adamantly atheistic, Savage tosses off such lines as “The reason I didn’t see dead relatives is I don’t believe in life after death. . . . I did, however, dream of ice cream.”

This is what Washington Post writer Nancy Szokan wrote in a Health & Science section article about my Skeptical Inquirer article "Covert Cognition: My So-Called Near-Death Experience" (July/August issue). The WaPo article, which appeared both in their print edition and online, is titled, "How does it feel to be in a coma for six weeks? Like a long bad night's sleep." I can answer that firsthand. In fact, I did.

Of course, this is great publicity for my writing and for Skeptical Inquirer. Indeed, the Center for Inquiry, which publishes Skeptical Inquirer, as well as Free Inquiry, where two of my essays will soon be published, posted a blurb about the WaPo article in their Facebook newsletter The Morning Heresy. But even better, the rest of the paragraph I previously quoted, states:

In a more serious vein, she casts her story as a warning against giving up on coma victims, running breezily through accounts of studies indicating that “covert cognition” occurs in a striking number of people who have been in a persistent vegetative state for years.

So public awareness of the covertly aware--as many as one in five people with consciousness disorders--was boosted by the WaPo article, as well. And I further hope that articles like this will inform their loved ones that they may indeed still be "in there," as Kate Bainbridge put it. Too many doctors pooh-pooh the signs of awareness that loved ones observe, as my doctors did.

And, I received additional good news on the publicity front today. I also learned that the book Dr. Adrian Owen is writing--the one I will be contributing to slightly by answering his questions and sending him my hospital records--is for the popular market, not just a coterie of researchers in the field.

When his book comes out, I hope no neurologist will be able to say that they haven't heard of Dr. Owen's groundbreaking work. And no loved ones of the victims will, either.

Part Two: Finally, I have squat

In Part One, I've fallen and I can't get up!, which is part of my Scenes from... series I presented a vignette that played out on countless evenings before my dermatomyositis was diagnosed and treated with prednisone. It was the prednisone that lowered my immunity so severely that I eventually came down with Legionnaires' disease, triggering a cascade of serious symptoms, including sepsis, strokes, and my six-week coma. But that's another story.

Here is Part Two:

August 25th will be the second anniversary of Coma Day, the day I awoke from my coma. It's a bit of a cliche to say I had to relearn how to walk, but that's exactly what happened. I've certainly gone much further than my doctors' gloomy predictions at the time. But then, isn't hard to be better than "hopeless."

My body's healing mechanisms have played a major part in that recovery. Thanks, body! But it hasn't gotten there on its own. I've had to exercise that body intensely, and put it through difficult and often bizarre physical therapy exercises to get there. At first, the milestones came fast and thick. It seemed that every time my occupational therapist in the nursing home recommended an assistive device, by the time my loved ones had acquired it, I didn't need it anymore. We still have that swivel spoon with my name written on it. This was mostly my body's doing. Thanks again.

As my recovery progressed, though, physical therapy began playing a larger and larger role. Therapy and body worked together to help me walk again. But as my rehab has progressed, the recovery milestones have had a tendency to sneak up on me. These advances have been mainly won by exercise. This was the case for my new ability to take consecutive steps on stairs, as I detailed here: Every step I take, every move I make. That was an ability I lost even before the strokes and coma, since my dermatomyositis damaged my proximal muscles along my trunk, including the muscles in my leg, buttocks, and thighs (as I mentioned in Part One).

And here's where we get to the bit I set up by portraying my battles with squatting, which was one of the first things to go when I started to develop the symptoms of DM. Squatting was once something I did without thinking, to pet a cat, shovel the litter box, pet another cat, scoop a turd, clean up that furball, and, oy, here's the rest of it. Do they really have to walk while they're puking? Hey, let's see how many different surfaces I can cover!

Eventually, it got so hard for me to clean furballs that the other members of the family had to take over. (Even Karena, who feels like barfing herself when she cleans up puke.) But I fought to retain the litter shovelling chore because of Joella's bad back. She also has a bad tendency to bend over at the waist. Whereas I trained myself to squat to spare my own bad back.  Until I did that, I kept throwing out my back while shovelling the litterbox. After I trained myself to stop bending at the waist, my lower back pain, not coincidentally, improved. It became such an ingrained habit that I kept forgetting that I couldn't do it anymore. And then someone would have to come and pull me up from the ground. Sometimes that person was Joella, risking throwing her back out--the exact opposite of my intentions in continuing the litter shovelling. Though my muscles improved after my DM was diagnosed and I was put on prednisone, I never regained my ability to squat, then stand up again without aid.

A few days ago, however, I was reaching down for something I had dropped, when plopped into a crouch, just as I would when I had newly lost that ability. Crap! Now, what am I going to do. I looked around for something leverage myself up with. But to my astonishment, I was able to stand up without using my hands. I did it again to make sure it wasn't a fluke. Yup, the squat is back!

I can't squat long enough clean up puke or shovel litterboxes in our multi-cat, multi-litterbox family yet. But now it's only a matter of time before I will be able to. And when that finally occurs, cat messes will have never smelled sweeter! ;-)

Scenes from (Before) My Coma Recovery: I've fallen and I can't get up!

This is the first installment of a two-part post. First up: a vignette from when my dermatomyositis was in its active phase, at a time when I thought it was possible I had DM, but before it was diagnosed. The second one will be about an ability I haven't had since that harrowing time, which I'm finally starting to get back thanks to my rehab exercises.

A little background: DM damages the proximal muscles: arms, shoulders, hips, buttocks, and legs. I had begun using a plastic stool to help me push up from the ground when shovelling our multi-cat household's litter boxes. Soon, that too became next to impossible.

I was kneeling in front of the litter box, my right leg cramping against my chest. The left leg didn't hurt that much...at least until I tried to unpin it from the ground. I pulled the stool in front of me and pushed with all my might. Nothing. I tried again, leaning forward as I attempted to push myself high enough for my left leg to open up under me. But the leg seemed to be glued to the floor.

"Move, goddamn it! Move!" I said as I began to cry. A lightning bolt of pain shot from my hips. I pushed again. This time, I slipped, my leg plopping back down painfully as the stool shot to my left. I yelled out an obscenity.

The stream of obscenities continued as I stretched my arm out, scrambling to reach the stool's leg. Eventually, I managed to edge the stool close enough to grab it.

I squared the stool in front of me again. But my left leg would still not move. I tried again and again. Still nothing. It wasn't long before I began to panic.

"Help me! Please help me! I can't get up!" I yelled, or rather tried to. My ragged voice barely escaped my throat [another DM symptom]. But everyone was asleep, and even if my voice had been normal, the game room was so far away from the bedrooms. It was hopeless.

"Help!" I continued, anyway, as I sobbed. I tried yet again. This time I managed to get my left foot under my me, but I flopped backward, hard onto my butt. I had landed a few feet away from our large, three-legged cat scratching post. Each post had a different kind of scratching surface. I inchwormed myself with my legs toward the tree-limb post, which was the one closest to me. When I was finally close enough, I grabbed the post with both arms and slowly pulled myself toward the steep step that lead to the dining room. It was only a couple of feet, but it felt like a mile.

Not one of our cats--they're only grumpy when you're petting one of the other cats.

If I could make it to the step, maybe I could edge my butt up that way. One, two, three...ugh. I slipped down again. I tried again. Plop. It took several tries before I manage to get one cheek on the step. For a couple of minutes the edge of the step was wedged in the crack of my butt, before I finally managed to turn the other cheek, so to speak. I pushed up with my hands on the edge of the step and propelled myself forward.

My feet unfurled, and I was standing once again. Instead of feeling relieved, though, I started crying again, this time out of fear of what was happening to me. It was times like this that the voice in my head would whisper, "You probably have DM." 

Soon, the voice would be proven right.

The March of Times

So far, I've been pretty lucky for someone who doesn't believe in luck. My article, "Covert Cognition: My So-Called Near-Death Experience," was tentatively scheduled for the July/August issue of Skeptical Inquirer. It's out now.

I was advised by someone in the know not to say in my article bio that my essay, "Without a Prayer of a Chance," was tentatively scheduled for the October/November issue of Free Inquiry. But low and behold, earlier today I received my proof for the essay, which will appear--wait for it--in their October/November issue. And, no, I didn't pray for it to happen

Seeing as I believe in neither luck, nor fate, I'm not counting on "Sympathy for the Devil-Believers" appearing in the February/March issue of Free Inquiry. But if it does, my work will be in almost continual publication through the beginning of 2016. I've already started work on my next essay for the same readership.

Hopefully, my string of published work will outlast the presidential campaign of Donald Trump.

Scenes from My Coma Recovery: Of Inhuman Bandage

In my coma-dream, I heard my mother muttering, “This place is a hellhole. What a shithole,” and the like, over and over again. I also dreamed of being turned over by a hulking attendant, as well as having my private parts cleaned so roughly it hurt. It got so bad that I eventually refused to be cleaned anymore. But of course, the cleaning continued because my act of rebellion had occurred in my dream world.

Keith doesn’t think the nursing home I had recently been transferred to, All Saints, was all that bad. Though my mother’s complaints may have been excessive, All Saints did have a slightly dingy, down-market air. It looked like the second-choice nursing home it was.

Admittedly, I still had some problems with over-rough cleaning at Country Villa Sheraton because my skin is really sensitive to abrasion. At least then I could tell the CNAs to be gentler. But one particular event that occurred a day or two after my awakening makes me think that All Saints was less than careful about patient comfort.

Ever since my dermatomyositis was in full progression, I had suffered from painful sores on my hands, arms, and thighs. When I awoke, they had healed everywhere but on my hands. You can see the sores in the cropped coma picture above.

I will give All Saints some credit because the sores received indifferent treatment in both the hospital and at Country Villa. All Saints at least gave them regular care. Joella has said that the sores improved, and no wonder. The treatments made it into my coma-dream as a soothing warm bath that periodically flowed over my hands.  I found it very pleasant, and I looked forward to it. But after I awoke, the treatment led to an incident that was far from enjoyable.

The procedure began as usual. The pungent smell of iodine filled the air as the nurse poured liquid paraffin over my hands, which lay in a plastic basin.  At first it felt a little too hot, but the paraffin soon cooled to a relaxingly warmth. It was a lot like a spa treatment, actually. The young nurse next bound my hands in gauze. It wasn’t until the she had left that I realized she had wrapped the bandage way too tight around my right hand.

My thumb was pulled straight against my hand, as a cop might do while handcuffing your arms behind your back. Pain shot through my thumb in waves. Soon, it was simultaneously numb and throbbing with lightening bolts of pain. Before long, my other fingers joined the chorus, cupped and tightly bound to their sisters as they screamed in agony.

My loved ones had been continuing their rotating visit shifts after the awakening. Joella was there with me as my bondage drama unfolded. I couldn’t speak due to my tracheostomy, so I exaggeratingly mouthed, “Too tight! Too tight! Hurts! Hurts!” After a few tries, she understood what I was trying to say. She tried to loosen the bandage, but it was too firmly tied.

I tried to work my left index finger in there, but I could barely move my hands even when unbound. The mummy-like binding wouldn’t budge.

“Help me!” I begged, crying from pain and desperation.

She tried again. And again.

“Nurse!” I mouthed, mimicking scissors with my left hand, for good measure.

Joella went to find a nurse. When she returned, she said, “Sorry, they said they would have to re-treat the hand. You’ll have to wait until the next treatment.”

That would’ve been several hours away. I didn’t care if my hand would be without treatment—I was in excruciating pain! And, I was worried about nerve damage. It was that bad. I wormed the cold edge of a knobby IV stand connector under the bandage to create some leeway, pulling away as best I could. It wasn’t long before I had to drop my enfeebled hands again. Then, I slipped the metal under the gauze again and continued working it. The cycle repeated. Eventually, I managed to create a very slight easing in pressure. But the pain continued to grow.

Every few minutes, I would beg for Joella to do something. “Please!” I would mouth, my hands pressed together in prayer. By then, she was crying too. She went back to the nurse again, but was once more rebuffed.

I made the scissors mime again, then put my hands together. “Sorry, I can’t,” Joella said, as tears ran down her cheeks.

Joella wasn’t being hard-hearted. She was acting like the respiratory therapist she was trained to be, deferring to medical authority. By the end of her visit, we were both emotionally spent. It was clear that she was as distressed as I was. But I was also utterly exhausted from my efforts to work off or at least ease the tension of the bandage. My arms were as weak as a baby’s from the six weeks of enforced immobility.

I fixated on my mother’s arrival, as I counted the minutes. My mom does not take no for an answer, nor is she deferential to authority.  I knew she would insist that I be freed from my bondage. As soon as she showed up to relieve Joella, I mouthed, “Too tight! Too tight!”and showed her my torturously bound hand. She pulled a pair of cuticle scissors from her purse and performed the surgery herself with a few snips.

My hand remained numb for few days, but after that, the nurses applying the bandages would ask me if it was too tight before leaving. But when a bed opened up at Country Villa, I insisted on taking it.

My mom asked me if I wanted to go back to All Saints, but I shook my head so vigorously that I felt a little dizzy. I was back in the hospital at the time. But that’s another story.

Scenes from My Coma Recovery: The Awakening

I’m reading, “Writing Life Stories,” by Bill Roorbach, in preparation for writing my memoir. It’s an excellent book, and as a plus, it also deals with personal essay writing. I’ve already done pretty well on that score, with two essay sales under my belt, but there’s always room for improvement. At any rate, he teaches memoir writing, so he has a bunch of useful writing exercises in the book. One of them is to write vignettes about your past experiences. I could write about my childhood—there’s plenty of material there!—but I’ve decided instead to write about my recovery. These little stories, after all, will undoubtedly wind up in the memoir (although not in the same form), so writing them now will give me a head start. I’m calling this recurring series, “Scenes from My Coma Recovery.”  I thought the logical place to start would be my awakening.

  

Here I was, finally studying to become a paleontologist, as I had always wanted to do. Of course, when my class gathered to study in the noirish, 30s-era back rooms of the American Museum of Natural History (a place I’ve always dreamed of visiting), I didn’t expect that the vacuums and other machinery scattered about would suddenly spring to life and start attacking everyone. [No one expects the mechanical inquisition.] I had just managed to blockade the room I was hiding in from the rampaging Hoover, when the drill left in that room also went berserk. [Don’t ask me how it moved.]  How would I get out of this dire situation? I never got a chance to find out. Instead, I woke up to another improbable situation.

I opened my eyes and thought, “Goddamnit, I just fell back asleep.” (A recurring theme in my coma-dream was that I was having a miserably restless night’s sleep. Every time I started to drift off, something would wake me up again.)

But this time it was no dream.

“You’ve been in a coma for six weeks,” my mother told me. “You nearly died.”

“Seriously?” I said, or rather tried to say. I was so weak I could barely lift my head.

“Don’t try to speak,” she quickly added. “You won't be able to. You have a tube in your throat to help you breathe.”

It took a few minutes for it all to sink it. How could this be true? I was just sleeping….

Slowly, I pieced together what had happened. The doctors, I soon learned, had told my loved ones that I was profoundly brain damaged. I spent the rest of the day emphatically shaking and nodding my head at every comment and question, trying to make sure everyone knew I was fully awake and still me.