Thursday, April 23, 2015

I am strong and beautiful (well, at least cute)

The chalked words read, "I am strong and beautiful."
People who have had near-death experiences--who think they've glimpsed heaven--often talk about how it has changed their lives. Well, in my NDE, I saw miniature zoo animals holding a tea party. That didn't have quite the same impact on my life because I don't believe that actually happened. But my life has changed nonetheless.

It wasn't so much the NDE, but the fact that I came so close to death and survived. Nearly dying has to change your life, whether you think you've had a profound spiritual experience or not. I bested death and came back laughing.

Don't get me wrong; I'm still afraid of death. Fear is really the wrong word. I think death will be final, so I'm not scared of going to Hell or what will happen, other than the possible suffering I might experience. What I'm afraid of is no longer existing. I know that will eventually occur, but I'd just assume put it off as long as possible. I've always been such a procrastinator.

I remain plenty insecure, as well. Just like my dermatomyositis, insecurity can go into remission, but it can never truly be cured.

But, again, the experience of having been so close to death has given me new confidence that I can conquer anything. My recovery has furthered that because I've survived a state so close to death that I would've been given Last Rites if I had been a Catholic. I've also surpassed the predictions of my doctors, who told my loved ones to give up hope for my full recovery. I've defied, as well, the physical therapists at the nursing home who doubted that I was actually walking because they were unfamiliar with the techniques of the physical therapist helping me to walk, John Silva. At Rancho Los Amigos, he learned that it was important to get patients walking as soon as possible, even if you have to help them to do it at first. I couldn't stand on my own yet, but by partially supporting my weight, he helped me to walk a few halting steps. Then, a few more. Eventually, I didn't need the support anymore.

If he hadn't done that, I would've been stuck in the nursing home, forcing me to lose my Kaiser coverage. I'm now starting to walk outside the house with the new Hurrycane Keith gave me for my birthday. I already walk around the house without a cane at all. I've been walking longer and longer distances during our rehab walks, too. I climbed a steep stairwell at the Santa Anita train depot museum at the Los Angeles County Arboretum just this past Sunday, on my birthday.



And, it's not like I've become death-defying. I'm still afraid of bad things happening to me, like the Sword of Damocles of my dermatomyositis-related increased cancer risk. But I now feel like I can cope with any challenge I should face.

So, while I'm not sure if I am beautiful, as the self-affirming chalk message asserts (I'll accept cute), I do feel strong.

Friday, April 17, 2015

The gift of life


Sunday I will celebrate my second birthday since I awoke after a coma from which my doctors thought I would never escape. My mother believes that my nurses were trying to gently nudge her toward pulling the plug eventually when they talked about how poor my quality of life had become. But was I really suffering? Unbeknownst the them, I was living through entertaining adventures in my coma-dream, like watching miniature zoo animals holding a tea party. As I passed this scene, I said, "They must be filming a kids' show," as if that would explain it. Dream logic.

About the same time, a doctor discussed with Keith what they should do when--not if--I started going into cardiac arrest. Yeah, I was that close to death. I know my believer friends think it was a miracle that I survived. To me, it was a miracle of modern medicine. Plus, I was very, very, lucky.

But what about those potentially one in five patients with covert cognition who haven't been so lucky? My mother and Keith weren't about to pull my plug, but I know a lot of people think, "He/she would never want to live this way." If it comes to that, they would make that terrible decision. How many of those unfortunate people are having their own coma-dreams, happy in their fantasy worlds?

Kate Bainbridge, the vegetative-state survivor I talk about in my upcoming (July/August) Skeptical Inquirer article, "Covert Cognition: My So-Called Near-Death Experience," has expressed similar concerns, as have others who were in the same situation.

As much as medical advancements saved my life, there is much that medical science still doesn't know. Indeed, the word about the latest findings about covert cognition hasn't yet gotten out to all the doctors in the field. My neurologist isn't even familiar with the groundbreaking research of Dr. Adrian Owen and his colleagues at the Brain and Mind Institute. He was the one who discovered Kate's covert cognition when he was still at Cambridge University. Thanks to Dr. Owen, Kate received therapy. Though she's severely disabled now, her cognition is fully intact. Like mine is.

I was fortunate enough to have Keith and my mother to read and talk to me, trying to keep my mind engaged. Much of what they said, read, and played for me leaked into my coma-dream. But I didn't receive therapy, physical or otherwise, because my doctors said it would be useless. I believe that my recovery might have been a lot shorter if I had received it.

Still, the doctors saved my life, and of course I'm grateful for that. I've gotten a second chance at life. But how many people have never had that chance because someone close to them thought they were saving their loved one from suffering? It's a wrenching decision for them, obviously. They're only doing it because of their love. But Dr, Owen has been able to communicate with people who were thought to be beyond hope--profoundly brain damaged--just like my doctors thought. Even if they don't wake up like I did, it may be possible to communicate with them. And then they can decide for themselves if they want to keep on living.

Being a writer, I feel an obligation to use my writing skills to educate the public about covert cognition. Maybe through my efforts, some of those one in five people will be celebrating more birthdays of their own.

While I was in the coma, apparently, Keith told me that when I woke up, I could use my writing to help people like me. Unfortunately, that's not one of the things I remember from my coma-dream, but he knew me well enough that it's come true.

Friday, April 3, 2015

Weighty matters



All my life I've been skinny. I'm one of those people everyone hates, with a great metabolism. I had a major sweet tooth, but I never had to worry about eating decadent desserts. Before my childhood lung damage was diagnosed, a pediatrician diagnosed my problem as anorexia. Never mind that it didn't fit my symptoms; it was the new, trendy diagnosis. I wasn't actually that skinny. My mother told him that I ate fine and I had always been that way, but he didn't believe her. Many years later, Keith used to tease people at his work by telling them that I could eat anything I wanted and still lose weight. Indeed, one time I became dangerously skinny just because I had increased my activity slightly by using our Wii.

But prednisone changed that.

Let's be clear, I'm hardly obese now. I weigh 113, with a BMI of 22.1--right smack in the middleof what's considered normal for someone who is five-foot tall. But I have extremely fine bones, and the BMI scale always overestimated what was normal for me. My usual average weight has been 95 pounds--plus or minus 5 pounds--my entire life. That was the weight my body naturally fell into without any effort. If I gained a little weight--and every pound looked like 5 on my tiny frame--all I had to do was trim a few extra calories and the weight would melt off, without any exercise.

When my dermatomyositis was first diagnosed, I thought I had inexplicably gained weight. I was 105 pounds, and I hadn't been eating any extra calories. I usually only gained weight when I had eaten many extra calories over a long period. If I had been more active, I probably wouldn't have gained any at all. After I started on the prednisone, I reduced my caloric intake to avoid gaining even more weight. But, instead of gaining weight, I started peeing my brains out and lost all that extra weight and then some. The extra weight was actually water retained by my muscles, which were inflamed by the DM, which was damaging them. I actually weighed about 86 pounds without all that swelling. My illness had actually made me lose 10 pounds. Suddenly, I was anxious about being too skinny.

But as the prednisone began to arrest my muscle damage, we started making plans for our trip to Sicily again. Keith almost cancelled the trip after the diagnosis. When we arrived in Sicily, I had a license to eat as many cannoli as I wanted. I was a kid in a pastry store.

Of course, after we returned from Sicily, I soon fell into a deep coma for six weeks. I was still skinny, even after all those cannoli, and I lost even more on the "liquid diet" being pumped into me during the coma. Even worse, I was put on a low-calorie, low-protein diet when my kidneys were failing. But the food mix wasn't changed back after my kidneys began functioning again. And after I awoke, they kept giving it to me, even when a doctor tried to fix the mistake. Eventually, my "food" order was changed, but the damage was done. I sank down to 83 pounds. To make matters worse, the nursing home wouldn't let me eat real food for several weeks due to my trach, and the liquid diet was giving me terrible diarrhea. I was starting to look like a Holocaust victim.

Before the trip--even though I was already too skinny--I discovered to my shock that I couldn't fit into most of my pants because my stomach was getting bigger from the notorious prednisone pregnant belly. Prednisone redistributes fat from your lower extremities to your waist and breasts. It also causes the charmingly named buffalo hump at the back of the neck. I've got that, too, along with the not-so-whimsically named moon face. My moon face is somewhat disguised because I have a thin, angular face, but it's definitely there. It was much worse last year.


Fortunately, they've all gone down quite a bit since I finally went off prednisone early this year. These unsightly side effects should eventually disappear altogether.

When I got back home from the nursing home, Keith put me on a high calorie diet, and I started gaining weight. I finally stopped the regimen when I realized I had overshot the mark and had gained too much weight. My repeated pneumonia's didn't help matters because every time I got sick again, the doctors raised my prednisone dose. The second bout of Legionnaires' disease was the worst. I was put on a high dose, which lasted for a month.

Now that I'm off the prednisone, I've been losing about a pound a month. I haven't been able to diet strenuously because I'm still trying to keep a healthy, balanced diet, but I have mostly cut out my beloved desserts. I've developed quite a taste for fruit, though. Fruit is my new form of sweets. And I still have that wonderful metabolism. Plus, I'm exercising a lot more than I did before my coma. The weight will continue to drop, and eventually I'll be back to 95 pound...give or take five pounds.


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Coma Girl

Coma Girl

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In July of 2013, I fell into a six-week coma and nearly died. When I awoke from the coma, I could barely lift my head. It has been a hard road to recovery. The doctors advised my loved ones to give up all hope for my full recovery, but while they were shining lights in my eyes to gauge my level of consciousness, I was telling them grumpily to leave me alone because I was trying to get back to sleep...in my coma-dream. I was experiencing covert cognition, and the coma-dream was my version of a near-death experience. I'm a skeptic, so I saw surreal images instead of spirits or dead loved ones. According to my research, as many as one in five people with consciousness disorders have covert cognition.

Not a miracle recovery, but a miracle of modern medicine

In 2013 I fell into a six-week coma and nearly died after I contracted legionella. The Legionnaire's disease was in turn triggered by immunosuppression caused by the prednisone I was taking for my rare autoimmune disease, dermatomyositis.

I suffered a series of strokes on both sides of my brain when the sepsis caused my blood pressure to plummet. I fell into a deep coma. My kidneys and lungs began to fail, as my body was began dying one organ at a time. My doctors told my loved ones to give up hope for my full recovery. They expected me to die, and even if I somehow lived, I would remain a vegetable or at best left so hopelessly brain-damaged that I would never be same. But unbeknownst to them, while they were shining lights in my eyes and shaking their heads, I was telling them in my coma-dream--my secular version of a near-death experience--to leave me alone because I was trying to get back to sleep. I was experiencing what is known as covert cognition, the subject of my Skeptical Inquirer article "Covert Cognition: My So-Called Near-Death Experience," which appeared in their July/August issue.

But it wasn't a miracle--despite what so many continue to believe--that I recovered so fully. I owe my life not to God, but the miracles of modern medicine, as well as the nature of the watershed-area brain damage I suffered, as I detailed in my article and in this blog.