Celebrating Coma Day: 5 Explorations of Covert Awareness

Miracle Girl: Celebrating Coma Day: 5 Explorations of Covert Awareness

Celebrating Coma Day -- the anniversary of my awakening -- by exploring my journey and the researchers who allow the covertly aware to speak for themselves. What better way to mark my rebirthday than by cheering the heroes of covert awareness?

Tennis Study: Revealing Active Minds Adrift in Inactivated Bodies

Miracle Girl: Tennis Study: Revealing Active Minds Adrift in Inactivated Bodies

A seemingly vegetative patient participated in his own care using the tennis study technique. But thousand of covertly aware patients languish...for now. 

Scott Routley's heroic efforts reach out from the gray zone of consciousness will help countless others. 

Juan Torres: Another Member of the ‘Miraculous’ Coma Recovery Club

Miracle Girl: Juan Torres: Another Member of the ‘Miraculous’ Coma Recovery Club

Is God handing out miraculous coma cures like candy?Juan Torres's recovery was more remarkable than mine. Doctors gave up on another now-recovered man.

But how many others have their plugs pulled?

The Owen Lab: On the Road to Widespread Covert Awareness Testing

Miracle Girl: The Owen Lab: On the Road to Widespread Covert Awareness Testing

My mom thinks nurses were trying to nudge her toward eventually pulling my plug. She refused to even consider it. But what about the other covertly aware consciousness disorder patients?

False hope is a danger, yet false doom can be deadly. Mobile testing by the Owen Lab may save the lives of countless covertly aware vegetative patients.

Covert Awareness: Into and Out of the Gray Zone of Consciousness

Miracle Girl: Covert Awareness: Into and Out of the Gray Zone of Consciousness

My coma awakening was a quirk, but Dr. Adrian Owen is making awareness testing a science. Few consciousness disorder patients recover as fully from the "gray zone'' as I have. But the work of dedicated researchers may change that.

Covert Awareness Club: Coma Comradery in the Internet Age

Miracle Girl: Covert Awareness Club: Coma Comradery in the Internet Age

This recovery blog has helped some coma survivors come to terms with their experiences. But I haven't been able to help a loved one of a patient until this week.

A wife contacted me via Coma Chameleon about her minimally conscious husband, asking my advice how to awaken him.

It was that very possibility that has lead me to keep this blog up in the first place.

Coma Chameleon: The True Drama of Covert Awareness

Miracle Girl: Coma Chameleon: The True Drama of Covert Awareness

I guessed that the play "Plasticity" might be about a similar coma experience to mine. But the playwrights missed the true drama of covert awareness. The comparison between their fictional depiction of covert awareness with my own coma experience suggests that truth is indeed stranger than fiction.

Survival Manifesto: Life is the Universe…and Everything

Miracle Girl: Survival Manifesto: Life is the Universe…and Everything

If there's one thing I've learned during my coma recovery, coping mechanisms are survival mechanisms too.

My Life Was but a Coma-Dream

Miracle Girl: My Life Was but a Coma-Dream

As readers of Coma Chameleon know, I awoke from my bizarre and absurd coma-dream into a reality almost as unbelievable.

Tennis Anyone?--Communicating with the Vegetative

Miracle Girl: Tennis Anyone?--Communicating with the Vegetative

While the Owen Lab is still in the process of making covert cognition detection widely available, they have already produced tangible benefits for a few seemingly vegetative patients...and their families.

In the case of Jeff Tremblay, the results have been quite moving.

"Hello, I'm in Here!"--Giving Voice to the Voiceless

Miracle Girl: "Hello, I'm in Here!"--Giving Voice to the Voiceless

I was cold; Kate Bainbridge was thirsty. Our discomfort was ignored because our caregivers though we were vegetables, unable to feel pain. That may soon end if the Owen Lab's covert awareness detection research continues to pay off.

Not only would covert cognition be less covert if they succeed, patients who will never recover as well as Kate and I have may someday have a say in their own treatment.

Celebrating Another Year of Consciousness

This is my brain on strokes.

Miracle Girl: Celebrating Another Year of Consciousness

Finally, Miracle Girl and Coma Chameleon blogs come together, as I begin a series of posts about covert cognition in celebration of my awakening, otherwise known as Coma Day.

As one of the few among the one in five vegetative patients with covert awareness to experience a full recovery, I feel a special obligation to speak out for those who cannot.

5 Reasons Why Heaven (Tourism) Isn't for Real

Miracle Girl: 5 Reasons Why Heaven (Tourism) Isn't for Real

My doctors wrote me off as a vegetable during my six weeks in bye-bye land. But as should be well known to my readers, even as they were shining lights in my eyes, I was telling them to leave me alone so I could get back to sleep. But since I was saying this in my coma-dream, they continued to shake their heads.

Instead of seeing angels, I saw miniature zoo animals holding a tea party. What was the difference? Could it be that I had been raised not on religion, but a steady diet of old science fiction movies?

Nah,

In my latest Miracle Girl post, I present 5 Reasons Why Heaven (Tourism) Isn't for Real, but there are many, many, many more.

SfMCR: The final battle to speak

In my coma-dream, suctioning was represented as being immersed in a tank filled with science fiction-inspired oxygen-permeated gel, which I could barely suck into my airways. Once awake, it felt like my lungs were being sucked out with a vacuum. Still, the plugs in my lungs were getting so bad that I kept having to give in and ask to be suctioned.

But suffering through the waterboarding-like suctioning wasn't the worst travail I was facing.

The morning after my breathing crisis caused by the plugs (see SfMCR: Struggling to breathe because of my trach), Ricardo came to my bed and said, "We're going to remove your speaking valve."

As if a dam had burst, tears instantly poured forth. "Please don't." I interpreted that as meaning they were going to remove it permanently, silencing me once again. "I need it!"

"But we have to. We have no choice. The valve is what's causing the plugs to form."*

"Isn't there something else we can do? I have to be able to speak," I sniffled.

"If we keep it in, it's going to delay your recovery. Don't you want to get better?"

I paused to think of a way out of this. Suddenly, a solution popped into my mind, "What if I let you take it out between visits?" My loved ones visited me in regular shifts, and that's when I most needed to communicate well the most.

He looked at me a minute, and said, "We can try that." Ricardo didn't look enthused. "But if you continue with the plugs, we're going to have to take it out."

And thus, when my visitors arrived, I would ring for an RT to reinsert my Passy-Muir valve, and when they left, I would signal again for the valve to be removed.

In between, I had to do my best to communicate with medical personnel using leak talking, which is as difficult to understand as it is to produce.

This was complicated by my warp-speed speaking style, which is related to my ADHD. Try as I might, I just couldn't force myself to slow down my speech or break my comments into shorter utterances. The best I could manage was to reduce the speed to subsonic.

This was a particular problem when trying to communicate with physical and occupational therapists because doing the exercises sapped me of precious breath.

Still, it was worth it to be able to continue speaking normally with my loved ones.

I was on powerful (and painful) intravenous antibiotics. Every time the younger nurse administered it to me, I had to fight back tears from the searing pain. The older, more experienced, nurse knew how to slowly feed the antibiotic into the catheter so it didn't hurt as badly.

But the excruciating injections paid off. Before long, I tested free of MRSA, and I wasn't an untouchable anymore.

A couple of weeks later, I no longer needed the speaking valve. Ricardo finally removed my trach.

As he was taking it out, Ricardo said he had known I was ready to have it out for some time. Later that day, Joseph broke into a big smile when he saw me without the trach. He told me that he could always tell when patients are ready for decannulation, and he had known that I was from the start. That's why, when it looked like he would be leaving Country Villa Sheraton, he warned me of Ricardo's excessive caution and advised to keep pushing for further weaning.

After my trach was disconnected from the ventilator. They fed me supplemental oxygen as a precaution. 

If I had been weaned faster, I wouldn't have needed the speaking valve for nearly as long, and most of this frustrating saga never would've occurred.**

After I had been red-capped, in preparation for decannulation.

*As I said in my last post, the folks at Passy-Muir, makers of the talking and eating valve, tell me that if my ventilator had been properly humidified, it would've prevented the formation of plugs. I will delve further into this subject in the next installment in this Scenes from My Coma Recovery series. Here is Part One, Part Two, Part Three, and a related SfMCR: Gaining the Power of the Pen.

**On the other hand, I also wouldn't have sold the essay I wrote about the drama of repeatedly losing my ability to speak. "Voiceless" will appear in Kaleidoscope, a semi-annual online literary magazine about disability, in either in July of 2017 or January, 2018. I will post a link to the essay when it comes out, so watch this space...eventually.

Enjoying a tater tot after the decannulation. I was wearing a shirt because that afternoon I had gone on a walk outside the nursing home.

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.

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.

Zebraitis

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

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

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

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

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

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

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

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

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

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

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

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

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.