So Always Look on the Bright Side of Death

Miracle Girl: So Always Look on the Bright Side of Death

Monty Python's Life of Brian is one of my favorite films. I can't count how many times I've seen the movie. It seems unlikely that it could've been made today, so we have the pre-Moral Majority times it came out in to thank for its release. Not that it wasn't a subject for protests, of course.

But I digress. My second Miracle Girl post is really about how life is indeed a piece of shit, when you think of it, as Eric Idle sang on the cross.

Yet atheists don't wonder why God put that shit in front of their shoe. And when a door closes, they don't wait for God to open a window. They do it for themselves.

And so have I, as I've coped with my illnesses in the last few years. Life's a laugh and death's a joke, it's true.

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.

My fate is in my hands

Yes, that's my hand and my keychain Magic 8-Ball.

I have written about this before, but I think that my atheism has helped drive my recovery.

Sure, my stubbornness has something to do with it--don't tell me I can't walk!--but knowing there's no one out there who's going to make things better makes me do it for myself.

I realize that believers find praying to God comforting. And they keep waiting and waiting for God to pick up the message.

I guess he screens his calls.

A famous large study of heart patients showed that patients who knew they were being prayed for actually did worse than those who weren't prayed for.

But like people relying on Magic 8-Balls, believers keep shaking that ball, waiting for it to say something other than...

ANSWER HAZY TRY AGAIN

They've all heard the canard that God helps those who help themselves--I wonder why that is?--but they still wait for the great big genie in the sky to make it better for them.

CONCENTRATE AND TRY AGAIN

But since I don't believe there's anyone up there, I know I have to rely on myself. My recovery won't happen on it's own.

IT IS CERTAIN

And there's a comfort in knowing that I have my fate in my own hands. The faithful are always excusing life's misfortunes by saying God works in mysterious ways.

BETTER NOT TELL YOU NOW

Well,  I don't have some fickle deity deciding to give me yet another bout of Legionnaires' disease because he woke up on the wrong side of the cloud.

MY ANSWER IS NO

I slowly weaned off prednisone early last year , so I'm no longer as immune-suppressed as I was. (My methotrexate also has immunosuppressive properties, but it's not coincidental that I haven't had a bout of pneumonia since I went off prednisone in late January of 2015.)

IT IS CERTAIN

I'm continuing to exercise on the stationary bike six times a week and hike once a week, not to mention my physical therapy exercises. I keep escalating the difficulty of the hikes. Indeed, the hike this Monday at Rocky Peak Park was the hardest yet (post and Tumblr link are forthcoming).

When I was a toddler, I had a shoestring with some large beads. I would chew on the ends of the lace, so they were rather frayed. I couldn't get one of the beads on, and I was getting red in the face with frustration. My mother took it from me. She was about to string it on for me when I grabbed it back, and said, "Me do it!"

I'm still like that when I feel frustrated. But when I see myself climbing new heights, I can say,

"Me did it!"

Will I recover the rest of my physical abilities without recourse to a higher power?

OUTLOOK GOOD

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!

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.

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.

Coma chameleons

Now that I'm a contributing writer for The Secular Spectrum, I have a new outlet for my skeptical and humanist writing. Therefore, I feel free to write more directly about my recovery again in Coma Chameleon again. This blog is subtitled, My Recovery Chronicles, after all. This post, however, is also a continuation of some of my recent subject matter.Yes, that's right, my fellow coma victim and experiencer, Eben Alexander.

A few months ago, I finally received my hospital records from my 6-week coma in 2013, after being mistakenly given the records from my two-week 2014 hospitalization. Both were due to Legionnaires' disease, caused by immunosuppression. Thanks, prednisone.

The 2447 pages of the PDF (I received it on CD) is a treasure trove of details, sandwiched between mountains of repetitive information. I don't have the space to go into all the information, and I've only skimmed through parts of it. But I did learn one juicy tidbit. I knew that my lungs and kidneys were failing, but apparently my liver wanted to get into the act, as well. When I mentioned this, Keith joked that my spleen was doing fine, as was my appendix. Everything else was going south. My impression is that the liver problems weren't as severe as the other organ failures, a speculation my neurologist later confirmed. Otherwise, I would've been given a Charlson Comorbity Scale of 3 instead of 2. Think of what it would've done for the miracle-believers if I had managed to survive a score the maximum of six out of the twenty-two frequently fatal conditions that make up the scale.

In Proof of Heaven, Eben Alexander actually implies that the very rarity of E.coli meningitis in an adult is evidence that God chose him as His Special Messenger. After all, as a neurosurgeon, he was the perfect emissary to the disbelieving medical and scientific community. Yeah, right. Wouldn't neuroscientist Sam Harris have been even better? I suppose his argument is that God chose a rare condition as a sign that this was an act of God. Isn't he special? According the famous Esquire expose, Alexander has a reputation of arrogance. And he hides it so well.

At any rate, he seems convinced that the severity of his illness is another sign of God's hand. But as someone who was at least as close to death, you'll have to forgive me for not being impressed. My doctors were every bit as convinced that my death was imminent. I'll take one life-threatening bacterial infection--in my case, Legionnaires' disease--and raise him multiple strokes on both sides of my brain, severe sepsis, lung, kidney, and liver failure, as well as another potentially fatal bacterial infection, listeriosis. And compared to his measly seven days of coma, I was comatose for six weeks.

Take that, Eben Alexander, messiah to the scientific world.

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

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

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

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

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

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

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

Part Two: Finally, I have squat

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

Here is Part Two:

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

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

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

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

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

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

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

Forever malwary

Yesterday, someone hacked my computer. Every time I tried to log into Blogger, I was instead prompted to sign into one of my Gmail accounts. It even happened when I clicked on the "B" from another person's blog. It doesn't appear that they got any sensitive information or caused any damage, but it did hijack my day and left me feeling violated.

But that's not what this blog is about.

It occurred to me that my illnesses have been a lot like that. Out of nowhere, I developed dermatomyositis. As the prednisone was arresting the DM muscle damage, the immunosuppression I developed from the prednisone caused me come to down with listeriosis and Legionnaires' disease. The Legionnaires' disease triggered a severe case of sepsis, which dropped my blood pressure drop so low that I experienced a series of strokes on both sides of my brain, and I fell into a six-week coma.

Okay, so that's a lot more convoluted, not to mention more serious, than what happened yesterday. After all, I'm still recovering from the strokes and coma; all I'm doing about the hacking incident today is running an extra anti-virus scan.

What they have in common is that something completely out of my control took over my life. Furthermore, cancer is a bit like malware. A malicious bit of code, genetic in this case, takes over your cells. As far as I know, I don't have cancer, but the increased risk of malignancy that comes with DM means I have to be ever-vigilant. Though the malware scan we ran yesterday seemed to have fixed my computer's infection, there's no guarantee that any cancer I might develop would be so amenable to cure.

The bottom line is that any time, something can come along and take control of your life. Of course, that hacker's aim wasn't to prevent me from writing this blog. The DM, Legionnaires' disease, strokes, and coma, weren't part of a plot to make my life miserable or kill me. When you're an atheist, you accept that bad things happen, and it has nothing to do with you. You just deal with it, run the scan or do the exercises, anything thing you can do move on with your life.

The plugged in know if they want to stay online, they have to accept the risk of hackers. All humans recognize that in life, they face constant dangers. Atheists believe that nothing can protect them from those hazards. Those that are all of the above do their best to be prepared.

Covert Cognition

A year and a half ago, during my six-week coma...

More than a year ago, taking my first steps at a nursing home...

A few months ago, walking at the Sepulveda Wildlife Preserve, on the way to a natural-bottomed section of the LA River...

  

While vacationing in Sicily, I came down with Legionnaires' disease, which is a (usually) rare form of severe pneumonia, though I've had the misfortune of catching it twice. In both instances, it was due to the immunosuppressive effects of medications I've been taking for an even rarer autoimmune disease called dermatomyositis (DM). I began getting sick in the waning days of our vacation, but I had written off my hacking cough as a nasty cold. Call it Mussolini’s Revenge. A few days after we got back, however, my boyfriend had to rush me to the emergency room. I was in such a mentally altered state that when he asked me why I hadn't turned on the air conditioner, I said that I liked the heat. It was 105, and I hate the heat.

The Legionaires' disease caused me to develop a severe case of septic shock. The sepsis made my blood pressure plummet, causing a series of strokes on both sides of my brain. I fell into a deep coma. When the doctors saw the stroke damage on my MRI they concluded that I was a hopeless vegetable. Indeed, they didn't even perform a Glasgow Coma Scale test on me, and it's just a low-tech behavioral check list. But I was still conscious. I was, as a British vegetative-state survivor, Kate Bainbridge, put it,"in there." I had what is known as covert cognition. When the doctors shined lights in my eyes looking for signs of consciousness, I was telling them grumpily, "Leave me alone. I'm trying to get back to sleep!" Unfortunately, I was snapping at them that in my coma-dream. They took my lack of response in the real world as confirmation that I was completely unaware.

My research has shown that there is increasing scientific evidence of covert cognition in as many as many as one in five people with disorders of consciousness. I was in a state of the art hospital. I think it's an outrage that more isn't done to evaluate and help those one in five patients that are "in there."

Kate Bainbridge was the first person pioneering researcher Dr. Adrian Owen scanned with Positron Emission Tomography. She was the one who made the "in there" comment, in a note to Dr. Owen. After her PET scan detected her covert cognition, she received therapy that eventually helped her awaken from her persistent vegetative state (PVS). My doctors said that any form or stimulation or physical therapy would be futile. I was fortunate enough to wake up on my own, anyway. Sadly, Kate is now severely disabled due to the nature of her brain damage, though her cognitive function is fully intact.

Six weeks later, I woke up from the coma. I was so deconditioned that I could barely lift my head. Through intensive physical therapy, I've made a great deal of progress, but I'm still not back to where I was before the coma. And I continue to experience weakness in my arms and legs, which were damaged by my DM. It has been a hard road back, but it has been made harder by the six weeks of complete immobility. My strokes cause little physical damage. Almost all of my problems were due to the coma itself. If I had received medically supervised stimulation, I could've had a shorter recovery. I might even have woken up sooner. That's what happened with Kate after Dr. Owen discovered that she was still aware.

Dr. Owen has communicated with a number of other patients with disorders of consciousness using functional magnetic resonance machines (fMRI). FMRI machines are expensive and aren't mobile, so he's devising ways to use electroencephalograms (EEGs) to detect covert cognition. In fact, they recently published a paper that showed some success in this endeavor. Perhaps they'll succeed in getting patients to communicate with EEGs, as well. I was given an EEG after my strokes. I wouldn't be able to write this if I were brain dead (except in the morning), so you won't be surprised to learn that they detected brain activity. Unfortunately, the EEG, at least as it's now performed, couldn't detect that I was experiencing a rich "coma-dream," as I call it.

The coma-dream was my skeptic version of a near-death experience. Instead of seeing spirits, I saw miniature zoo animals having a tea party--like poker-playing dogs, only with tiny china cups. The elephant held the teapot with its trunk. The revolving segments of my coma-dream were often interrupted by the things my loved ones were saying, reading, or playing for me to stimulate my recovering brain. The doctors, however, continued to dismiss the signs of my increasing awareness.

I worry, as Kate Bainbridge does, that people are having their plugs pulled because doctors are telling their loved one, as mine did, to give up all hope for their full recovery. How many of them are in there too?

Here is a link to Western University's website about their Brain and Mind Institute, which is headed by Dr. Owen: The Owen Lab. The website has a huge amount of information about the lab team's covert cognition experiments. There are also links to videos about Kate's story. It's well worth checking out.