Obamacare(s); Trump Won’t

Miracle Girl: Obamacare(s); Trump Won’t

I was shown the door of my nursing home. That's the future of healthcare for those with pre-existing conditions, post-Obamacare.

This story will be familiar to regular readers of this blog!

Disarmed and Dangerous (At Least to Myself)

Back in a wheelchair, temporarily, as I waited for paramedics in the first aid station of the Getty Center after the fall.

Miracle Girl: Disarmed and Dangerous (At Least to Myself)

My bet is on my sling healing my broken arm, not God. Modern medicine already repaired my dislocated shoulder.

Yes, it does hurt like shit.

5 Reasons Why I Needed a No Soliciting Sign for Hospital Clergy

Miracle Girl: 5 Reasons Why I Needed a No Soliciting Sign for Hospital Clergy

Hospital and nursing home clergy are supposed to lend comfort to patients and their loved ones of every religious persuasion in their time of deepest need. But they don't have an equal respect for those who have no religion at all.

I should know.

Coming to a newsstand (or mailbox) near you

The cover of the issue where my first Free Inquiry essay was published. It was appropriate for someone who was called "funny, profane and adamantly atheistic" by the Washington Post.

Free Inquiry has been been berry berry gooood to me! (Perhaps I'm dating myself with a reference to that old Saturday Night Live catch phrase. That bit is also kind of racist, making fun of Latin American accents, but, hey, I didn't create that sketch!)

Anyway, it's gotten so that when I submitted my latest essay to them, I expected that they would accept it for publication. I would've been crushed if they had rejected it, but my assumption proved correct, fortunately.

"Saving My Life by Saving My Soul?" shares the title of a Coma Chameleon blog on the same subject. It tells the tale of the mendacious minister at the hospital, who made the situation around my apparent death bed more stressful for my secular loved ones.

The essay also talks about the very first time someone implied that my recovery was a miracle. That was the priest in my Catholic nursing home, All Saints. He took one look at me after my awakening and said, "God is good."

I've written about these stories both in Coma Chameleon and in the Secular Spectrum. The essay is a synthesis of what I've written in both blogs. It's slated for the October/November issue of Free Inquiry. My first essay, "Without a Prayer of a Chance," also appeared in their October/November issue, in 2015. The publication of the new essay will therefore make a fitting anniversary celebration for my secularist writing career. Though I'll always hold a special place in my heart for the first work I published for secularists, the Skeptical Inquirer article, "Covert Cognition: My So-Called Near-Death Experience."

I guess you can say that my coma-related experiences have been berry berry gooood to my writing career, too!

Here are the Coma Chameleon posts on the aforementioned stories: All Saints; one "none"; Saving my life by saving my soul?; God say me eat COOKIE. And here are the SecSpec posts: "God is Good," But for What?; Isn't There Something in the Bible About Lying?; The Chaplain's Cat Logic; A Little Birdie Told Me to Do It.

SfMCR Valentine's Day Special: "I will always love you"

Keith fanning me not with palm leaves, but a hospital whiteboard for patients (the heater was turned up too high in my room, and I was feeling stuffy). This was during my second bout of Legionnaires' disease, and he was there for me then, too.

I didn't know why I had stopped seeing Keith, even though I never ceased loving him. All I knew was that my new boyfriend looked almost identical to Keith, down to the clear band-aid bands affixing a loose lens to the frame of his glasses.

What a weird coincidence.

Keith had used one of the band-aids we had purchased in Sicily to cover the sores on my hands and arms to repair his glasses. What were the odds that David...or Michael--no, I already dated a Michael, how about Jonathan?...er, maybe Ricardo? would have made the same klugey repair?*

I loved the way Keith--did I say Keith?--I meant Ricardo, yes, Ricardo, gently kissed my eyelids or forehead. The way he barely made contact with the skin was both tender and somehow deeply erotic.

It was bizarre how much his body also resembled Keith's. But Ricardo had a full beard, while Keith had a goatee and moustache. I guess it was just my type.

How I looked forward to those kisses....

I marveled at how polite Ricardo was. "Thank you, sir" and "Thank you, Ma'am" were his refrain whenever someone else was in the room. I couldn't quite make out the other people said, but Ricardo's words, I heard loud and clear.

What a gentleman he was! 

Ricardo would tell me at length his plans for us. We would go on an Alaskan cruise. Keith and I had loved looking at the calving icebergs as we flew over Greenland on our flight back from Sicily.

I guess Ricardo loved icebergs, too.

He also spoke of future trips to tour Latin American ruins like Machu Picchu. I had always wanted to see place like that. What fun it would be!

When the time came for him to leave, Ricardo would plant the gentlest of kisses on my forehead or eyelid, and say, "Remember, I will always love you, and I will never leave you."

And Keith hasn't.

Later, after my awakening, Keith explained that with all the equipment I was hooked up to, lines, tubes, and my trach, I didn't have much space left for him to kiss. He was also deathly afraid of hurting me. Thus the oh-so-gentle kisses.

Nonetheless, the emotion expressed was unmistakable.

I will always love Keith, too.

The bouquet of a dozen long-stemmed roses that Keith gave me for Valentine's Day this year.

*This was a bit of lucid dreaming within my coma-dream. Even as my new boyfriend was my dream-reality, I debated what his name should be. I eventually settled on the romantic and faintly exotic, Ricardo, though a few times I slipped up and called him Keith. Obviously, this fake Ricardo has no relationship with the nursing home respiratory therapist whose name happened to actually be Ricardo.

SfMCR: Silenced again

This photo was taken weeks later, when I was being trained to sit up in a wheelchair for extended periods. The ball was for physical therapy.

I had been ecstatic when I found I could talk a little after I had returned to the hospital to have my hemorrhaging gastric tube incision repaired. The transfer to the hospital probably wasn't coincidental to the newfound speaking ability. In the process, the deflation of my trach cuff that allowed the speech hadn't been noticed.

As hard as it was to produce comprehensible sound, at least I could speak again. My tracheostomy had accomplished what no person had ever managed to do before...it shut me up.

When a respiratory therapist checking my trach silenced this hard-won skill, I was devastated, as I detailed in my previous edition of Scenes from My Coma Recovery.

Four days after the surgery was completed, I left the hospital. In the meantime, we were able to secure a bed in the nursing home my mom had preferred to send me to in the first place, Country Villa Sheraton.

I was adamant that I didn't want to return to All Saints Healthcare because I felt they weren't gentle enough in their care of me. I had severely abraded skin around my private parts, a yeast infection, and a UTI. In my coma-dream, I eventually refused to be cleaned by my caregivers. But since that act of rebellion was all in my head, nothing changed.*

Country Villa had a brighter, cleaner look to it. I was excited about the better nursing home, which hadn't had any open beds when it came time for me to be transferred out of the hospital during my coma.

But mostly, I was anxious that Keith mention to someone that a respiratory therapist had prevented me from speaking. I had no idea what he had done, but I was desperate to regain my voice.

As I wrote about in the last SfMCR, Ricardo restored my voice by deflating the cuff that seals the area around the trach, keeping air from leaking around it like a dam. Trachs are often deliberately deflated to allow what is called leak talking. It's usually perfectly safe, as I had demonstrated the few days I had been doing it.

Though at that moment, Ricardo was my hero, later in the day, he turned into a villain. Before the end of his shift, he told me, "I'm going to reinflate your cuff now."

"Please don't!" I pleaded.

"What am I going to tell people when you have a complication?" said Ricardo. "You don't want to get me in trouble, do you?" He said it more playfully than defensively, but I was later warned of his excessive caution by another respiratory therapist I had grown to trust.

"Please don't!" I said again, crying piteously as he pulled the syringe from his pocket. "No..."

Ricardo plunged the syringe into the pillowy plastic bulb hanging from my trach. It inflated, and I could speak no more.

I continued to sob as he promised, "As soon as the speech therapist gives the okay, we're going to give you a speaking valve."

The next morning, when Ricardo came on his first rounds, I pointed to my trach and put my hands together in a gesture of begging prayer.

He restored my voice with a pull of a syringe. I broke out in a wide smile and said, "Thank you."

This cycle continued for several days until he finally stopped silencing me.

It was weeks before the speech therapist approved my talking and eating valve. But that only sparked new painful and frustrating dramas, as I continued to periodically lose my ability to speak.



*Keith doubts that All Saints was negligent or too rough in my personal care. He says that the CNAs had struggled to keep me clean due to my rampant diarrhea during my coma. I do admit that my skin has always been sensitive to abrasion, and that undoubtedly factored into my skin irritation. But I also remember hearing my mother muttering like a mantra, "Shithole. What a dump!" over and over again. Keith thinks this may have influenced my impression of All Saints. But if I had known I was in a Catholic nursing home (the name should've been a clue), I would've wanted to transfer anyway.

A Little Birdie Told Me to Do It

A little ruby-crowned kinglet at the LA County Arboretum seemed anxious about something, but not to whisper in our ears.

The Secular Spectrum: A Little Birdie Told Me to Do It.

Have you ever noticed that God always seems to tell people to do exactly what they wanted to do already?

It's almost as if people are confusing their own inner voice for God's.

The hospital chaplain's inner voice certainly didn't tell him to respect my and my loved ones' nonbelief.

I still can't believe that he would pray, "May you take the Lord's light into your heart and be healed," within earshot of my mother, after she told him we were atheists.

When my mother first told me of this, I could still hear the anger in her voice.

What "man of God" would say that in front of an atheist mother grieving over her dying atheist daughter?

Apparently, to him, nondenominational didn't mean he had to respect those with no faith at all.

No pain, no gain, no sustain

Doing a little mugging during a walk. We have our own exercise bike at home.

Skating was the first thing I gave up after my lungs became damaged when I was 11. I loved nothing more than to skate...and skate fast. And I would skate until it was time for me to come home.

The first time I tried to skate when I was supposedly recovered, after several weeks of battling what was diagnosed as pneumonia, I returned home after only a few minutes. I couldn't understand how I could be so exhausted already. I tried a few more times, but those attempts ended the same way. I didn't yet know that I my lungs had been permanently damage, so I thought I would eventually take it up again after I fully recovered.

The bike went next. I could barely pedal up the slightest of inclines, so I was walking the bike more than I was riding it.

I thought I would return to the bike one day too.

I was still sickly for years after that, and there's a lot we may never know about what was happening to me. I suspect there was still some continuing disease process involved.

But the exercising I've been forced to do for my coma and stroke recovery has shown me how much strength I could've maintained if only I hadn't completely given up my formerly active lifestyle.

I didn't appreciate the profound impact of inactivity.

After my lung damage was diagnosed, the physical therapist I was assigned by Children's Hospital gave me aerobic exercise program to build my endurance back. But the PT greatly overestimated my ability. I could barely make it through the warm-up exercises, and that reinforced the idea of my new weakness in my mind.

I think I can't. I think I can't.

Even though I'm much stronger now, I still have difficulty with that kind of fast, sustained, vigorous exercise. Perhaps it has to do with the nature of my lung damage, which was later worsened by my two Legionnaires' disease bouts and repeated pneumonias.

Thanks again, prednisone!

I've always known that I could improve my stamina by exercising, but I never realized how much until I was forced to do it.

Not being able to walk is a great motivator.

The home physical therapist I was assigned after I left the nursing home used to take me for walks around our street. I liked Alan a lot more than I did walking along the suburban street. He advised me and Keith to find somewhere to walk. That was the best rehab advice he could've given me. I never would've built the endurance I now have by walking in our neighborhood. It's way too boring.

We started walking in the Sepulveda Basin Wildlife Reserve, with its abundance of Pacific Flyway birds, and branched out to various gardens. My attitude changed, as I began to push myself to walk ever farther.

Though I was pushing myself because I knew it would help my recovery, I never would've gotten as far as I have if weren't also enjoying myself.

Spinning is less fun, but we make the time pass by playing lectures from the Teaching Company. I love learning. Instead of concentrating on how tired I feel, I focus on the absorbing the information. When we can't watch a lecture, the time passes slowly and it begins to feel like a slog.

Hopefully, most people won't need Legionnairesacise to motivate them. But I think my experience holds some lessons for the people who haven't been through the kind of medical traumas I have.

It's not that exercising is too hard; it's just that you're weaker than you think. I can't emphasize enough how weak inactivity can make you. According to research, it only takes a few weeks for muscle atrophy to begin.

Make the exercise fun. Don't pick an exercise routine just because it's trendy or simply because you think it would be good for you. If it feels like torture, you'll eventually quit. If I had been assigned the exercise program I have now--fun, gradually advancing, and sustainable--I would've been much more likely to actually have stuck with it.

In short, do what I do now, not what I did!

The Chaplain's Cat Logic

The Secular Spectrum: The Chaplain's Cat Logic

I had interviewed Keith and my mom about the lying hospital chaplain I've nicknamed the Prevaricating Preacher when I first wrote about him in Coma Chameleon. But the one person I had neglected to ask about him was Joella because she isn't a nonbeliever like the other two.

I finally did so the other day, in preparation for writing "The Chaplain's Cat Logic.

Joella confirmed what I had expected, that PP had prayed for me while she was there. But as I was talking with her, I explained what Keith and my mom had told me about the cleric. I realized that he had apparently adopted cat logic after he promised Keith repeatedly that he wouldn't bother me.

In PP's mind, he didn't have to obey Keith if he wasn't there to catch him...just like a cat.

I had my hook for the SecSpec post!

Fast-tracked into the graveyard

When I was in the nursing home, I drew up a living will. A doctor explained to me my various options. He said I could opt for continuing life support for eternity, no matter how hopeless my situation (he actually used the word eternity); life support with a trial weaning, where I could be weaned off the ventilator to see if I could breathe on my own, though it could be turned back on at any time if I couldn't, or a do not resuscitate order. Well, the DNR was out of the question, but I thought about the other two options.

I'm not one who dreads living on life support. As long as I'm mentally there and not suffering, I want to live as long as I can, whatever the means. Been there, respirated that. But there are situations when it doesn't make sense to keep alive a husk of a person who is truly as profoundly brain-damaged as my doctors thought I was.

At the time, it made sense to choose the trial weaning option. After all, how could it hurt to see if I could do without the ventilator?

But here's the rub, given that my doctors were so ready to give up on me, despite the fact that I was, unbeknownst to them, covertly aware. Even worse, as I've recently learned, there are even cases of people effecting full recoveries after being declared brain dead by their doctors. Brain dead. Instead of a trial weaning, would it instead be a terminal wean, as was the case for George Pickering III?

The fact is, the more I learn about the limits of what doctors know--and their inability to acknowledge it--the more I doubt that I can trust doctors to fairly evaluate my condition. Yes, perhaps my doctors might switch the respirator back on after I failed the trial. But who's going to make that decision, and what will they base it on? And can I trust that they've done all the appropriate tests in the first place? The doctors in the case of George Pickering III clearly hadn't. A simple EEG would've shown that he still had brain activity, and was thus not brain dead. What snap judgements have they made based on the odds, as opposed to my actual condition?

Furthermore, I now no longer trust that the doctor who explained my options was presenting them evenhandedly. The way he phrased my choices betrayed the way he was trying to lead me. I'm not old, nor do I have a fatal illness. I shouldn't be a candidate for being fast-tracked into the graveyard.

The more I learn, the more I'm convinced that I should go back and amend my living will...while I'm still able.

Death panels were never real, but doctors informally create them every day.

Really most sincerely brain dead?

On Christmas day, a friend posted a link on my Facebook timeline to an article about a tabloid-ready story of a father, George Pickering II, who held a three-hour stand-off with the police, initially at gunpoint, to prevent a hospital in Texas from putting his son on a "terminal wean," after they proclaimed him brain dead. That means they were slowly withdrawing his life support. Another son disarmed their distraught father.

The doctors had convince that son and their mother--the father's ex-wife--to allow the supposedly brain dead George Pickering III to die. I guess a terminal wean is supposed to be gentler than yanking the plug, slowly easing him into his grave. The hospital contacted an organ donation center that a death was imminent.

The hospital had appointed his ex-wife and other son as guardians of George, Jr. The father admitted that he was drunk when he pulled out his gun, but his desperation was real. “I felt hopeless," he said. "They were moving too fast. The hospital, the nurses, the doctors.” His son had suffered a stroke, but he was convinced that his son wasn't brain dead. And indeed, during the siege, his son squeezed his hand on command three or four times. That reassured him that he would be able to convince the hospital that the junior Pickering wasn't in fact brain dead, and he eventually surrendered.

Was he fooling himself? Out of his mind with denial? Or just drunk? No, no, and no. The standoff occurred in January of 2015, Today, George Pickering III is fully recovered. This is what he has said about his dad's actions, "There was a law broken, but it was broken for all the right reasons. I’m here now because of it."

There are so many things about this that are disturbing that I hardly know where to start. When I recounted the story to Keith and Joella, I was surprised at the level of anger I felt welling up. First, how could they so confidently proclaim the son brain dead? If they had performed a simple EEG on him, they would've seen that he still had brain activity, as mine showed. My doctors never said I was brain dead, only that I had "profound brain damage."

Next, there was the rush to "harvest" George III's organs. Um, maybe we should wait until they're actually brain dead, what do you think? I'm a strong believer in organ donation--I'm a donor myself, if any parts of me are still useful. But this ghoulish eagerness to give up on him and give his organs to someone else, who is of course very deserving of them, if it weren't for the fact that George III is happily still using those organs.

One of the reasons people are afraid to be donors is that they fear there might be just such a hasty decision to call them dead while they're still fresh, so to speak.

But I have to go back to the diagnosis of brain death by the Tomball Regional Medical Center in Houston. Not being a doctor, I can't imagine what lead them to this conclusion. They couldn't have followed any of the standard procedures to diagnose brain death, which is irreversible. Once brain death occurs, there can be no recovery. And the diagnosis should be pretty cut and dried.

However, a few days after I learned of the Pickering's drama, I read a shocking article in the LA Times about the differing definitions of brain death among hospitals. Many of their protocols haven't kept pace with the science of this literally life-or-death diagnosis.

I'm reminded of the issue I've pondered countless times about the one in five consciousness disorder patients with covert cognition. How many of them have had their plugs because they were written off as basket cases, as I was? But until now, I didn't have the same worry about those who have been diagnosed as brain dead. After all, nothing more could be done for them...assuming they're really most sincerely brain dead.

Obviously, you can't endorse the father's desperate gambit, but you can certainly sympathize with his desperation. After all, he yelled, "I'll kill you all," as he pointed his gun at hospital personnel. But, the fact that his son was about to have his life support shut off, yet he's now fully recovered, does tend to lend credence to his sense of urgency to action. The courts seem to have agreed. One of the charges against him were dropped, and the other was reduced to time served. This is what George Pickering III went on to say:

It was love. It was love. It’s the duty of a parent to protect your children and that’s all he did. Everything good that made me a man is because of that man sitting next to me.”

And he was sitting there because of him, too.

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.

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.

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.

On This Day

Two years ago, yesterday, according to the On This Day Facebook app, Keith shared the above photo of me on my four-hour tour of our house during my second furlough, as they called it, from the nursing home, Country Villa Sheraton. Furlough, as if I were getting out of prison. Country Villa was far from the Sheraton, but I was receiving desperately needed physical therapy. One of my most difficult exercises was to stand. That was it. I would just barely struggle to stand up, over and over again. "That's ten," Denise, the occupational therapist, would say. I would rest a bit, then she would say, "Let's do another set." It was like musical chairs without the music...or the fun. The prize was that I would be able to get up from a chair without help. It was utterly exhausting for me--that's how weak I was. Only a month before I could barely lift my head from the pillow.

I have many more readers than the last time I wrote about this, but this previous post makes a good primer about what I went through as I struggled to walk: A Journey of a Thousand Miles. As it details, another physical therapist confided to me that the other therapists thought John Silva, the main physical therapist helping me to relearn how to walk, was rushing my walking.

John Silva helping me on my first walk outside the nursing home.

But if John hadn't put me on such an aggressive program, I wouldn't have even been able to leave the nursing home when I did, and I would've lost my Kaiser Permanente health insurance. I had to be out by November or my coverage would've gone bye-bye. As woefully unprepared as I was to return home, I needed that coverage, considering that I still had a serious autoimmune disease, dermatomyositis. I could've continued with non-Kaiser Medi-Cal coverage, but my quality of healthcare would've suffered without Kaiser's superior care. And, we would've had to pay the nursing home out of our own pockets because it's likely that Medi-Cal wouldn't have paid to keep me there either. A Kaiser social worker who worked at the nursing home confided to me that in a few months time, what Kaiser was doing to me would be illegal. That was because the unfairly maligned Affordable Care Act--better known as Obamacare--would be taking effect then.

During that first furlough, I slipped and hit my head on the toilet because I wasn't used to a four-wheeled rollator. Don't worry, I wasn't hurt; I have a hard head. I'm lucky I didn't crack the toilet. John had instructed me to sign out a walker to be used during my furlough, but he was off for the weekend. A tightly wound physical therapist who disagreed with John's methods refused to allow me to sign out a walker (though this was a common practice). Without John there, I was at her mercy. So Keith went to a large local drugstore to buy one for me, but they only had four-wheeled rollators. The kind of walker I had been using had only two wheels, with rubber stopper ends on the front legs. I later learned that four wheels aren't recommended for people with little physical control. But Keith didn't know that either. If that therapist had allowed me to take a walker with me, I wouldn't have hit my head. As I said, I was okay, but that was a lawsuit waiting to happen.

After I returned home, I tricked out the walker with a tote and a cupholder.

The second home visit went smoother because Keith had ordered a two-wheeled walker from Amazon, which I continued to use until I was strong enough to handle the rollator. To the right is a photo taken on one of my first rehab walks using the walker Keith bought. And below is a photo taken on our first rehab walk at Vasquez Rocks, when I was finally strong enough for the four-wheeled rollator. The rollator opened up areas like Vasquez Rocks that would've been too difficult to manage using the walker, which created a lot of drag, even with the ski glides we put on it.

I wasn't walking fast; it's really windy at Vasquez Rocks.

This Friday, we will be carving pumpkins for Halloween. We'll also be holding a belated birthday celebration for Joella, Keith's mom. During her birthday, she was away on her annual summer pilgrimage to visit her other two sons and their families. Friday will also be the second anniversary of my return home. My homecoming was on the day before Halloween. I did not, as our custom, carve a pumpkin. A knife in my feeble hands was not advisable. I didn't want to return to the hospital so soon after leaving the nursing home. I was still recovering from MRSA pneumonia and I was experiencing painful spasms in my right foot that were eased somewhat by vibrating slippers. Thus, instead of my usual jester costume, I wore a warm sweater coat and matching vibrating slippers, since wearing only one would've looked weird. Yes, it was Halloween, but it wasn't that kind of fun-weird. I was dressed as a sickly person who had just gotten out of the nursing home after a six-week coma. I think the bandage on my tracheostomy site was a nice touch. The gloves were to hide the open sores on my hands, which had not yet healed, a legacy of my dermatomyositis. Maybe I should've used my hands as part of a zombie costume....

Handing out candy and toys to the trick-or-treaters with Joella the day after my return.

Last year, I was strong enough to carve two pumpkins and I wore the jester costume.

Last Halloween with Joella and her dog Sadie. Traditionally, I hand out the toys and Joella gives out the candy. Sadie handles the sniffing.

This year, I will have fuller hair, but more importantly, I won't need to use a cane. I only use it now when I'm out to provide stability. Everyone needs a bit of stability in their lives. I would've benefited immensely from a few extra weeks in the nursing home, but it was certainly nice to be home.

God say me eat COOKIE

Part 3 of a two-part blog about my encounters with nursing home and hospital clergy. I suppose you can call it part 2.1, since it's unpacking the subject of the second blog. I really should stop labeling linked posts with numbers. (Part one.)

Naturally, atheists think they're right about the nonexistence of God and consider the faithful misguided, at the very least. In fact, that's the very word I once used to describe the family members lamenting the fear of the dark they thought was preventing the poor dying girl in my ICU room from "crossing over." The same goes for believers, of course. How can atheists deny the "evidence" of God's work? But what sets the two groups apart? And what was different about the prevaricating hospital chaplain and his probable motivation for his behaviour?

When was the last time you read about a child being killed in an attempt to drive religion out of them? Take your time; I'll wait. In most cases, the adults involved in tragically fatal exorcisms are doing this through love, not malice. But surely it's unfair to link the probably well-meaning mainline Protestant hospital chaplain to such ignorant, fringe religious thinking, you may say. I agree, despite the fact that I snarkily used an image from The Exorcist to illustrate my last blog.

But what links these religiously based behaviours is an absolute conviction of the righteousness of their cause. It's a belief that the ends justify the means, and a faith that God is guiding their actions. Atheists, on the other hand, believe that their own biases and desires are shaping their motivations--duh!--not some outside force. They therefore tend to consider their moral actions with utmost seriousness. Far from being rudderless without God to guide them, it's been my experience that nonbelievers think far more deeply about the consequences of their actions. The faithful are more likely to translate their inner voice as God telling them to do, coincidentally, exactly what they want to do.

That's like Cookie Monster telling himself that God is the voice in his head. God say me eat COOKIE! Nom, nom, nom. An atheist is more apt to be like Oscar the Grouch. I love trash, and that's why I collect it. I don't steal trash from other Grouches because it would be wrong to take their battered and worn sneakers just because they have more holes. They love their ragged or rotten or rusty trash too.

So what does this have to do with our lying cleric? He was probably so convinced that he was doing God's work that anything he did was God's will, even if it involved lying. There was a life at stake, after all. Without God's light, she will surely die. Yes, all of her loved ones but one is a nonbeliever, but keeping me from praying for her is like preventing her doctors from treating her. It's God's will that I pray for her, despite her beliefs and her loved ones' wishes. I'm lying, but it's for the greater good.

Of course, he wasn't doing it for selfish reasons, but the fact remains that he lied because he thought he was doing God's work. God's will gave him him license to do exactly what he wanted to do. What a coincidence. No one thinks they're a bad person, and when they do wrong, they can usually find a handy excuse to justify their actions. But those who believe their actions are guided by a higher power don't even recognize that it's an excuse, however justified. To them, it's a command from God. They chomp down on that cookie, convinced all the while that it's not because me love COOKIES.

All Saints; one "none"

Godless at the hospital.

At All Saints Healthcare, five days before my awakening. Sill godless.

In my hospital records, my religion is listed as atheism. Leaving aside that fact that atheism isn't a religion, you would think that would've hung a big No Solicitations sign over my bed to clergy on their ministering rounds. But the day I awoke from my coma, I was visited by the nursing home's resident priest. He sat down beside me and asked me if he could hold my hand. I nodded, though I've always felt uncomfortable with physical contact with complete strangers, even when I didn't have dermatomyositis sore-covered hands wrapped in bandages. At least I wasn't an altar boy. Sorry, I had to make a crack. Now you know why I've always been afraid of saying the wrong thing around the religious.

As he gently took my hand in his, he said, "God is good." Oy! I fixed my eyes on him to prevent them from rolling. (He was the first of countless others who have called my recovery a miracle. I've probably the only atheist who has strengthened the faith of more believers than Richard Dawkins.)

"Do you remember me?" he continued. I didn't, but I nodded anyway, trying to be accommodating. I felt awkward around him. My tracheostomy tube prevented me from speaking, so at least there was no danger that I would accidentally blurt out something offensive. For that reason, among many others (hello...atheist!), I've always demurred when a hospital chaplain asked if I wanted to speak with them. This time, I couldn't just say no.

He smiled at me. "Have you thanked God for your life?" I was literally speechless. "No!" I wanted to say, but all I could do was vigorously shake my head. He looked as if I had slapped him in the face. What was I supposed to say? "Thanks, God, for saving my life after you almost killed me. Oh, that's right, I don't believe in you, anyway." He soon took his leave of this ungrateful atheist, but not before asking me if he could pray for me. As I've said of my friends' prayers (which I didn't yet know about), prayers are more for the prayer, so I nodded. It seemed harmless enough, and I still trying to remain polite.

I wanted to squirm, but I was so weak could barely move. It felt like he was praying at me, not for me. I didn't know why I was being subjected to this visit, and I couldn't wait for it to end. Certainly, my Jewish-atheist mother, who had been there for my awakening, hadn't asked for him. As I eventually learned, the nursing home where I had stayed for five days, after being transferred from the hospital, was called All Saints Healthcare for a reason. It's a Catholic nursing home. I guess No Saints Healthcare wasn't an option?

But this problem started in the secular Kaiser hospital where I spent the bulk of the six weeks of my coma. That story will be told in Wednesday's blog. You'll see why my attitude--at least when it didn't involve my friends' prayers--was closer Eric Wojciechowski's take in his essay, "Please Stop Praying for Me," which was paired with my essay, "Without a Prayer of a Chance," in the October/November issue of Free Inquiry.

Have you had a similar experience with hospital or nursing home clergy? Share your story in the comments section!

Click here for Part 2: Saving my life by saving my soul?

For them, Heaven truly was for real

Not Heaven, but the view over the Alps as we flew back home from Sicily. The clouds eventually cleared.

I think I've given the impression in my most recent blogs that I'm obsessed with near-death experiences. But as a long-time atheist and skeptic, my interests are far wider. Indeed, my essay in the upcoming issue of Free Inquiry "Without a Prayer of a Chance" is about what believers think about my "miraculous" recovery...and my reaction to their reactions.

But that's not what this blog is about. I'm going to recount a tragic drama that occurred in a nearby bed in ICU. I wasn't conscious--covertly or otherwise--at this time, so I'm telling it secondhand based on Keith's memory.

In the bed lay a young girl who had also received a death sentence from her doctors. Her large extended family camped out beside her bed for extended periods, bringing snacks and pillows that they left in the corner of the waiting room for their return. I can't even begin to imagine the pain her family must've been in as the poor girl clung to life. We don't know her story, but it's apparent that they believed that her fight for life was at its end. The parents among my readers may already be weeping, and it brings a lump in my throat, as well. You might want to grab a box of Kleenex before I recount the short, wrenching conversation Keith overheard from the other side of the curtain.

One anguished relative said, "She's afraid to cross over." Another agreed, adding, "She was always afraid of the dark."

To me, this is as heartbreaking as it is illuminating. On the one hand, their faith was causing them distress because they truly believed that her fear of the dark was keeping her soul from "crossing over." [She was so young that she was still afraid of the dark--how heartbreaking is that?] But I think it was their deep faith that made them hope that she would get over her fear and reach the heavenly paradise they so fervently believed in. They of course wanted her to live, but since she wasn't going to, they wanted to take her hand, tell it's okay, and help lead her to her heavenly reward. They truly believed that she would be going to a better place.

I've mocked this idea countless times, but to them this must've been immensely comforting. Keith and my mother, however, had no such faith to fall back on. I think if her family had been nonbelievers, they would've been hoping against hope that she would defy the odds and live, much the way I did. Instead, they were praying that she would find the strength to leave this earthly veil.

Even though I think their faith was misguided, I can't help feeling glad that it gave them some comfort in this most unimaginably painful of times.

The view from the other side of the bed

When I wrote my Skeptical Inquirer article "Covert Cognition: My So-Called Near-Death Experience," I was hoping that my experience and my research into covert awareness would help inform the public about the one in five people with consciousness disorders who have covert cognition. But it didn't occur to me (but should've) that my article would also affect the family members who have already faced that unimaginably painful position...from the other side of the bed.

After Skeptical Inquirer shared my VICE Post Mortem column interview on Facebook, which linked to my article, one woman thought the article was fascinating, but also found it “very painful and heartbreaking to read.” That's because she was forced into a situation no one would ever want to be in. Her father was in a coma and he had a do not resuscitate order. She sadly, and obviously extremely reluctantly, gave the order to pull the plug.

I gave her my sympathy and told her that if he had a DNR, then she did what he wanted. Few ever sign a DNR, and those that do usually have a good reason for it. But ever since she was forced into this wrenching decision, she's probably had pangs of doubt. And then she reads my article explaining why people like her father might still be "in there."

In answer to someone who posted that it sounds frightening to be trapped in a seemingly endless dream/nightmare, I responded that it wasn't really that scary. But another Facebook member, who is living through every parent’s nightmare, responded, “I try not to think how frightening it would be. My son has been in a coma since he was 14. He's now 31.” And in a second post, he added, “I hope it's just blank.”

I said, “I'm so sorry to hear this. My heart is with you.” But, really, there’s nothing anyone can say to ease his anguish. I certainly hope I did nothing to deepen it. I'm afraid the answer is that I did, and it makes me sad. Replying to another poster, he said, "One person's comatose recollection does NOT a true story make." He has good reasons to wish my story weren't true, and I hope for him that his son is among the four out of five patients without covert awareness.

It’s likely that many more who have faced these unimaginably painful situations read my article in SI and the VICE interview. Do I regret publishing it? No, because I think my greater obligation is to those voiceless patients with covert cognition. How many are having their plugs pulled not because they have a DNR, but because their doctors say they're hopeless? Kate Bainbridge and others who were in similar situations have spoken of the same concerns. As a writer, I'm in a unique position to spread knowledge of covert awareness to the general public. Perhaps in the future, my words will give ammunition to the arguments of the family members of the covertly aware when doctors pooh-pooh their observations, as mine did.

The daughter who faced that horrific choice with her father noted the advances in covert cognition research Dr. Adrian Owen I mentioned in my article. I added that he’s made considerable progress in developing techniques to detect covert awareness in community hospitals. In the future, people like her may no longer be forced to guess about cognition of their loved ones. 

So, would I do anything different? Yes, next time I will add a sympathetic paragraph about the countless families facing that inadequate testing and incomplete knowledge.

My heart goes out to them all.