Wednesday, November 25, 2015

Thankful for my blessings though there's no one to grant them

Biting off more than I could chew at a Halloween festival last year.
November 20th was the anniversary of my first blog. It was about covert cognition, a theme I've returned to again and again in the year I've been writing Coma Chameleon. October 30 was the second anniversary of my return from the nursing home, and August 25 was the third celebration of Coma Day--the day of my awakening. Thursday will be Thanksgiving, they day Americans are supposed to be thankful for our blessing.

I obviously have a lot to be thankful for. Not that I don't do plenty of kvetching, which is one of the perks of being a member of the people who invented that ever-useful word. Whenever I complain about some minor frustration, Keith usually says something along the lines of, "Oh, I'm so not in a coma. I'm so not dying. I'm so not in a wheelchair," or something along those lines.

The truth is, until my coma, I never really thought about what I had to be thankful for during Thanksgiving. After all, I didn't believe there was a god to bless me, to hand me good fortune. It's not that I was ungrateful, it's just that I never really bothered to count my blessings.

But ever since my first Thanksgiving back from the nursing home, mere months after I returned from the brink of death, I have thought about about my blessings--and not only on Thanksgiving. They are many.

I think about all the people in my dire circumstance who weren't so lucky. I think about all the covertly aware patients who haven't been discovered or managed to wake up on their own. And I think about what might have been.

If my doctors had been right and I was profoundly brain damaged, I would've been irreparably brain damaged, a shell of my former self. That's the reality for far too many people. There but for the grace of the God I don't believe in go I.

And that's assuming I even survived. A doctor discussed with Keith what they would do when, not if, I started going into cardiac arrest. He overheard one doctor asking another if I was a candidate for lung transplant. The second doctor replied, "No, we should save it for someone who has a chance."

But I did have a chance. And so many others didn't. And tomorrow, as we sit down at the table Thursday, I will spare a thought to those in my situation who weren't so lucky. I think prayer is a waste of time because there's no one on the other end of the line to receive the call. But I will do something that's a lot more effective: I will pledge to do my best to inform the public about that the one in five consciousness disorder patients with covert cognition. And I will spare a thought to the family and friends who didn't get to see their loved ones wake up.

I have only my doctors and providence to thank for my recovery, but that is enough.

I Was a Jewish Hitler in the 5th Grade

My latest post for the Secular Spectrum: I Was a Jewish Hitler in the 5th Grade.

No really, I was. I was given an assignment to profile a famous person in history class. I picked Hitler because I was curious about the Holocaust. I always picked subjects I was curious about for my book reports. If I had more consciousness about my heritage, I would already have known more than the bare essentials about the genocide of my people by the Nazis.

But it was my ADHD to blame when I missed the rest of the teacher's instructions. I heard the part about how we were supposed to write the report as the person we were profiling. The part I missed was when she said we had to read it out loud in class.

When it came time for us to read the reports, I was appalled. I went to the teacher and asked her if I could avoid readed my report. She refused. I then told her that my subject was Adolf Hitler. Still, she wouldn't let me avoid read it aloud. So, I got up in front of that class filled with fundamentalist Christians and pretended that I was Adolf Hitler, the man who murdered six million of my people.

Friday, November 20, 2015

Wearing the scarlet "A" (for anxiety)

My usually shapely calves look pillowy in this pic taken during my hospital stay. Note the blood pressure cuff left on my arm due to the constant heart rate monitoring.
I've had ADHD all my life. The H stands for hyperactivity, which is often accompanied by an anxious disposition. But having anxiety is not the same as suffering from an anxiety disorder. This propensity was probably what led my primary care physician to write anxiety disorder on my medical chart, after I began exhibiting high blood pressure whenever I saw him. When I tested my blood pressure at home, it was much lower, so I was diagnosed with white coat syndrome. That's when the label of anxiety disorder was added to my chart. I have to admit that I was the one who first suggested this diagnosis, since the only time I had ever had suffered from high blood pressure was when I experienced what was called a paradoxical reaction to a blood pressure medicine given to me because it can help control chronic migraines. Instead, I suddenly developed blood pressure so high that I could see the blood pulsing through the veins in my wrists. After I was taken of the meds, my BP returned to its usual level, slightly below normal.

But the problem with my self-diagnosis is that I didn't really feel all that nervous when I saw the doctor. My natural nervous energy does indeed increase my blood pressure readings somewhat, but I believe something else was going on.

This was in 2012, a time when I was beginning to show the symptoms of what would be eventually diagnosed as dermatomyositis. Indeed, the extensive rashes and muscle weakness I was suffering from were the very reason I had set up the first appointment. Unbeknownst to us, DM was in the process of attacking my muscles. The heart is a muscle.

But the damage was done. The label of anxiety disorder remained on my chart even after my DM was finally diagnosed. It rankled me every time I saw it in my after visit summary, but I never did anything about it. It was annoying, but seemed relatively harmless. That is, until I entered the hospital in February 2014, after coming down with a second bout of the (usually) rare Legionnaires' disease. Thanks, prednisone!

Beyond the Legionnaire's disease, which was fortunately caught before I slipped into another coma--been there, vegetated that--the ICU doctors were concerned about my soaring heart rate. Indeed, it was far higher than it had been when I had been mistakenly diagnosed with white coat syndrome. Tachycardia can be fatal, so the doctors were right to be worried. They tested me to see if it was positional tachycardia syndrome. In other words, if sitting up caused the problem. Nope. Their other tests could find no other cause.

And that's when one of the docs saw the words anxiety disorder in my chart. Aha!

He marched into my room, as Keith and I chatted, and abruptly told me that he was going to put me on an anti-anxiety medication.

I calmly told him that I didn't have an anxiety disorder.

"It's nothing to be embarrassed about," he said. "They're quite safe. Many people take these medications and find them very helpful for controlling their anxiety."

"But I don't have an anxiety disorder!" I insisted, my vehemence perhaps reinforcing his conclusion. "I have ADHD, which means I'm often hyper. Sometimes I do experience mild bouts of anxiety that pass quickly, like when I'm late for an appointment. That's a common symptom of ADHD. But having occasional bouts of anxiety, that don't affect my life in any real way, is not the same as having an anxiety disorder. No psychiatrist has every diagnosed me with an anxiety disorder." As I said this, I kicked myself for not doing anything about that galling diagnosis in my records.

"But we have to do something about your heart rate. It's too high; you're at risk for heart attack or stroke," he sputtered. Then he reiterated his previous comment.

Keith jumped in, "Could you please explain what qualifies you to make this diagnosis?"

"Her heart rate is dangerously high. We haven't been able to find a physical cause for her symptoms."

"And besides that?"

As Keith Socratically probed, it became evident that the doctor was simply assuming that I had to be suffering from anxiety. Suddenly, we realized why the doctors and other medical personnel kept telling me to relax. I was about as relaxed as possible for someone with a tube down her throat.

Round and round the conversation goes; where she stops, nobody knows. It didn't quite degenerate into shouting, but the atmosphere was charged enough to explain the hackles raised all around. Eventually, the doctor left, apparently miffed at how these two unreasonable people had reacted to his perfectly rational diagnosis. He struck us both as extremely arrogant.

But I will give him credit. Instead of pushing the point, he apparently went back and studied my charts more closely. And when he did, he noticed that I was on two very powerful blood pressure medications, at levels usually prescribed for heart failure patients. I had been taking those meds ever since I awoke from the coma, so I hadn't questioned them. He couldn't have known about my previous paradoxical effect experience because it happened when I was with a different medical group, so he came to this conclusion on his own. History had just repeated itself.

He began stepping down the meds while I was still in the hospital--discontinuing them immediately could've been dangerous. Instead, I was put on a regime that would eventually eliminate the meds entirely after I returned home. By the time the dose had been halved, the swelling in my legs apparent in the above photo had receded significantly. Suddenly, I found that my walking had improved by leaps and bound, without any actually leaping and bounding, of course. The pain and pressure my feet felt in shoes lessened, then finally disappeared completely. And finally, my blood pressure dropped. It's now back to slightly below normal. When I next saw my PCP, I asked him to remove the scarlet A from my records.

I'm now anxiety-free, or at least my records are.

Thursday, November 19, 2015

The Devil Lies in Ourselves

When Keith read The Devil Lies in Ourselves, my latest SecSpec post, he didn't deny making a puzzling comment to my declaration that I believed in evil, which is all too evident. but not sin, a mere religious concept. As I relay in the post, he said, "I would've thought it would be the opposite." But, as it turns out, Keith was also mystified by his statement. In fact, he had no idea why he said it. This conversation happened many years ago, but the reason I still remember it is that the comment deeply perplexed me. I pondered it for some time, eventually deciding that the reason he felt that way was he was raised a Christian, while I, as someone raised without religion but of Jewish ancestry, grew up under the shadow of the Holocaust.

But now neither of us knows what was in his mind at that moment. Still, as we watched the live news reports of the Paris attacks streaming from the English language news of France 24 last Friday, my thoughts returned to the ever-present reality of evil.

Friday, November 13, 2015

Another view from the other side of the bed

This was taken as I was being transported to All Saints Healthcare, five days before my awakening.
I've read some truly heartbreaking comments from people who have faced the wrenching situation of having loved ones in comas. They came when my Skeptical Inquirer article, "Covert Cognition: My So-Called Near-Death Experience" was posted online and after SI shared a link to my VICE Post Mortem column interview on Facebook. One woman was forced to pull her father's plug because he had a DNR, and another hoped that his son, who had been in a coma since he was 14, wasn't aware of his situation. And those are just two that were moved to comment on Facebook. How many read my article or the interview and mourned anew, but never commented about it?

In my post about this, The view from the other side of the bed, I expressed regret that I had caused them emotional distress when I wrote about the potentially one in five patients with disorders of consciousness who are covertly aware. I vowed to be more sensitive in the future to the family members who have faced this impossibly painful position.

Though my consciousness, so to speak, had been raised, the truth of the matter is that I still feel my greater obligation is to the covertly aware patients who can't speak for themselves. This issue is becoming more pressing by the day as methods of bedside covert cognition detection inch closer to reality.

One story I recently learned of, however, left me feeling heartened that not every loved one of comatose patients was pained by reading my account. Indeed, some may have felt consoled, like the sister of a Facebook friend who had been forwarded my post for the Secular Spectrum, "Please Put a Blanket on Me"--I Was Aware in My Coma. She was confronted with the same heartrending situation with her mother as the other daughter, in which she was also forced to disconnect her parent from a ventilator due to a DNR. But instead of wrestling again with her painful decision, she felt comforted by the information I gave about covert cognition and specifically my own experience.

While I was in the coma, Keith set up a pillow speaker so he could play my favorite music for me. He wanted to keep my mind engaged even when no one was there to do it for me. The music, like The Hitchhiker's Guide to the Galaxy and documentaries, seeped into my coma-dreams. I had wondered why I was able to "daydream" the music in such perfect detail.

As it turned out, my friend's sister had played soothing music for their mother as she lay in her coma. Knowing that it was possible that her mother could hear it gave her considerable solace. It's heartening to know that in relaying my story, I'm not hurting every loved one who has been placed in a situation that no one ever wants to face.

The fact is that there is no way to know if her mother was among the one in five covertly aware patients. The odds are against it, but does it really matter? Few sign a DNR unless there's a good reason for it. But if her mother did indeed have an island of awareness left, she went out surrounded by loved ones, listening to peaceful music as she drifted off for the last time.

Could any of us hope for anything more?

Thursday, November 12, 2015

Winning the Everlasting Gobstopper of Life

My latest post for the Secular Spectrum: Winning the Everlasting Gobstopper of Life

This is my brain on strokes. But despite what my doctors proclaimed, the damage wasn't "profound." They knew that my damage was in the watershed areas--as my hospital records attest--but didn't take into account that my relative youth and the nature of watershed-area stroke damage gave me a better chance of recovery, which they listed as poor.

My neurologist told me that the watershed areas tend not to control the most vital systems and they tend to bounce back faster after they've been damaged. My relative youth also meant that I had a better chance of recovery.

To me, the fact that the less important systems blink out first and recover better strongly suggests that this is an evolutionary triage system,

Natural selections saved my life, even though I was hardly the fittest.

Saturday, November 7, 2015

Unpacking from a Trip to Heaven

For months, I've clung to the idea that one of my favorite pair of sandals were still in a hidden pocket in my suitcase. Keith had unpacked it when I was in my coma, and it was understandable that he might miss them in that fraught time. After all, surely I couldn't have left them in Sicily--we checked all the drawers and shelves as we packed up from the hotel. But when I was writing my latest post for the Secular Spectrum, I was forced to check the suitcases. They were indeed missing from those hidden pockets. Gone forever, since it's unlikely the hotel would've kept them for two years.

I think the opposite happened when Eben Alexander "unpacked" what happened during his near-death experience. I think many of his "memories" became distorted by his later research and other influences.

As I've said before, memory is not like Memorex; it's more like Play-Doh.

Here's the link to the post: Unpacking from a Trip to Heaven

Thursday, November 5, 2015

A major advance in covert cognition detection

Both the left and center scans are of vegetative patients who were behaviorally identical. The scan on the right was of a healthy control.
Somewhat amusingly, I learned about a recent breakthrough in covert awareness detection using EEGs while I was researching a future post for the Secular Spectrum that will in part be about Eben Alexander (yes, him again). After all, I contend that he was simply experiencing a form of covert cognition during his NDE, much as I was.

In a related stories link within a typically sensationalist Daily Mail article about Alexander's story, I found an article that I initially dismissed--after a quick skim--as only being about Adrian Owen's tennis study and the Owen Lab's Hitchcock study, both of which I'm a intimately familiar with. But I'm a terrible skimmer, and it turns out that the article was really about a 2014 Cambridge study (the university where Dr. Owen conducted his famous tennis study) that had employed the tennis technique to test a method of using EEGs to map patterns of brain activity in vegetative patients. Using graph theory, they detected coordinated signals of brain activity, which indicated that the neuronal networks of the subset of patients who were covertly aware connected in similar patterns as the study's healthy controls. They were able to cross-reference their results with fMRI scans by asking the same patients to imagine playing tennis while having their brain activity measured by each form of scan. The same patients whose fMRI scans indicated that they were imagining playing tennis also showed the signature signs of that activity during their EEGs. The above image shows two vegetative patients on the left and in the center. The one on the right is a healthy control. As you can see, the one in the center is virtually identical to the one on the right.

This is what co-author of the study, Tristan Beckinschtein, said about the detection of covert cognition:
This data gives you a different way to think about what the patients can do. You can do the classic test to see if the patient is responding or not. But even if the patient shows nothing, you may see a well-informed information processing network using EEG. And if that is the case, regardless of any other test, the clinician can say, "This guy has the potential to process information. I don't know why he's not processing information, but maybe we can find out." And hopefully, knowing that capacity is there will make physicians keep their eyes open and less likely to write the patient off.
As my doctors did.

For those who aren't regular readers of my blog, I should point out that I received an EEG, which not surprisingly showed that my brain was functioning. Yet it couldn't detect my covert cognition. Eben Alexander hasn't released his medical records, but if he had his EEG would undoubtedly show that his brain was functioning, as well. If it hadn't been, that would mean that he was brain-dead, and he wouldn't have been able to write his two books about his near-death experience, just as I wouldn't be typing this sentence now.

Oh, and by the way, when I clicked on the link to the study, whose name do you think I read listed among the researchers? I'll give you a hint: it's an actual neuroscientist, instead of declared "scientist" who throws out everything we know about neuroscience. Yup, it was none other than our old friend, Dr. Adrian Owen. He's still working with Cambridge University, though he's now at Canada's Western University, ever striving for the advancement of covert cognition detection.

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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.