Wednesday, May 27, 2015

Dulcimer Therapy, Part 2

The mountain dulcimer is one of the most disabled-friendly stringed instruments around, especially if you play it with a noter. It also teaches you to separate your arm actions (which is still a work in progress for me). But most of all, it's a lot more fun than pulling your arms behind your body until you say uncle! That's a slightly exaggerated version of some real shoulder exercises I was given. I think they're supposed to improve range of motion. Either that or it prepares you for entering a life of crime.

When I came home from the nursing home, standing up repeatedly was one of my assigned physical therapy exercises, as well. It was as if I were attending a legendary performer's farewell concert. It's still hard for me to believe that something so simple could've become so difficult. I spent every ounce of energy I had on my physical therapy and just trying to do the bare minimum of what was necessary for living outside a 24-hour care facility. You know, like walking to the bathroom. So, playing the dulcimer was out of the question.

But as I grew stronger, I began to play again. Joella had to put the dulcimer at the end of the couch for me so that I only had to carry it a few feet before plopping down on the couch. I held onto my walker so I wouldn't smash the dulcimer into splinters. I could play only a half hour at most. But the length of time slowly increased. At first, it felt almost as if I was learning to play all over again. My timing was way off. I thought I had just grown rusty, but I eventually realized that my body simply didn't have the coordination it did before the strokes and coma.

Before the coma, I had been doing a simple form of fingerpicking based on Travis picking that I learned from Jennifer Ranger at the Harvest Festival of Dulcimers. But when my fingers tried a simple roll, they tripped up. It was like trying to crawl on a layer of greased ball bearings. I simply couldn't get them to pluck the strings in sequence consistently. And my fingers cramped up and grew tired within minutes.

They soon began coordinating better, however. And as they did, my general hand dexterity improved. I suppose if I were a chord/melody player, the finger of my left hand would've gained more strength and nimbleness, as well. But I love noter/drone playing. While I was still in the nursing home, it seemed to me that my left hand, which had always played third fiddle to my very dominant right hand, had become the weaker one. It quickly improved, but that might have been one of the reasons why I had so much trouble fingerpicking at first.

I've come to realize that, contrary to what my neurologist once thought, my weakness was not solely due inactivity during my six-week coma. I've experienced uneven patches of lost strength (not that I had much to lose in the first place), due to my string-of-pearls stroke damage. If you saw my MRI, you would know why it's called that. Unlike most stroke victims, I had strokes on both sides of my brain, since it was caused by oxygen-deprivation from plummeting blood pressure, not blood clots or burst vessels.

But even recuperation isn't as strong a motivator as getting lost in an activity you enjoy. I can be extremely single-minded when I'm concentrating on something; it's related to my ADHD. When I'm learning a new song or technique, I often play far longer than I had intended. That was unwise when I was in the active phase of dermatomyositis, because exercise can actually exacerbate the muscle damage. But during my stroke and coma recovery, that hyperfocusing contributed to my muscle strengthening and improved coordination, as I played until thoroughly exhausted. That's something I was unlikely to do when I was doing boring physical therapy exercises, as important as they were.

And my dulcimer physical therapy still continues. For Valentine's Day, Keith gave me a set of foot and ankle percussion instruments. They're meant to accompany your playing when you tap your feet. He gave me a foot tambourine, wooden ankle rattles, and a foot shaker (though I prefer the one that goes on my finger because it perfectly matches my strumming rhythm).

I'm currently practicing tapping my right foot to strengthen it because I have difficulty keeping up the tapping throughout songs. My right leg is my weaker one due to that uneven stroke damage, but I'm still strongly right-footed. This tapping practice is already improving my rhythm, and it should have the added benefit of strengthening my weaker foot in the bargain. And, again, I'm doing it more than I ever would a physical therapy exercise because it's fun.

Before I was banned from Friends of the Mountain Dulcimer for talking too much about my illnesses (yes, really!), a friend posted a pic of similar billboard to this one.

Stringed instruments had fewer side-effect, too!
I'm a member of Kaiser. Do you think they might consider handing out dulcimers instead of pills?

Tuesday, May 19, 2015

Dulcimer Therapy, Part One

Keith told me that he bought my Dorsey Williams dulcimer, which was his anniversary gift for me, while I was still in the coma. Seeing as he's also a dulcimer player, he would've bought himself a very fine dulcimer if I had died or never recovered enough to play it, as my doctors expected. But of course I did recover, and it's one of my favorite dulcimers now.

Before our vacation in Sicily, I hadn't been able to play as much as I used to before I developed dermatomyositis. The DM damaged my proximal muscles, including the muscles of my shoulders and arms. I could only lift my arms for about a minute before they would drop like a stone. I eventually stopped playing to rest my arms because I thought my problems were due to shoulder strain from using my laptop too long without adequate arm support. I had already quit practicing fingerpicking because the cracked and bleeding skin at the tips of my rash-covered fingers made it impossible. I hadn't yet connected the two seemingly unrelated symptoms.

Once my DM was correctly diagnosed, and the prednisone started to work, I was able to start playing the replica scheitholt--a German dulcimer ancestor--Keith gave me for my birthday. It was hard for me to tune because it had zither pins instead of tuning pegs, like a regular dulcimer. Keith dug up a ratchet to help me tune the pins because a regular tuning wrench wouldn't work with the non-standard size zither pins. The tuning remained difficult for my still-weak hands, however, and I had to use every ounce of strength I could muster. I had a lot of fun playing Greensleeves on the sheitholt, though. It seemed like an appropriate song to play on a replica of a 17th century instrument. And the challenge of learning a new song encouraged me to stick with it, playing for ever longer periods as my hands and arms slowly strengthened. The continuing raw state of my fingers and knuckles still prevented me from fingerpicking.

But before long, I started preparing for our trip to Sicily, and my playing time began to wane. When we returned, I was too sick to play. We all know what happened after that.

When Keith brought the Dorsey Williams dulcimer to the nursing home after my awakening, it was just to show it to me. I was too weak to actually play it. And when went I went home on a furlough several months later in preparation for returned permanently, I wasn't able to play it much because I had limited time on the furlough. I was still weak, as well, and my playing had become rusty. 6-week comas can do that to you.

A couple of weeks later, I left the nursing home with sheets of physical therapy exercises for my arms and shoulders. But the one I was most eager to pursue wasn't on the printouts.

Thursday, May 14, 2015

You'll never walk alone

Here I am on a rehab walk at the Sepulveda Basin Wildlife Reserve, along with Joella, who came with us that day. The chairs for our picnic with Keith are in the wheelchair, which I did without on our last two walks at Sepulveda.

I've talked a lot about all the invaluable emotional support I've received from my online friends, but I haven't really gotten into the in-person support given to me by my loved ones. I've recently been reminded that not everyone with severe physical hardships is fortunate enough to receive so much understanding and support from their families. Without mine I truly couldn't have gotten where I am now.

I've only gotten hints at what my loved ones went through when I was in the coma. After all, as I've mentioned many times before, my doctors told them I had profound brain damage and that they should give up hope for my full recovery. Indeed, I was expected to die. When I awoke completely, and it was obvious that I was truly all there, the joy and relief must have been overwhelming. They had already been visiting me daily in shifts for six weeks during the coma, and that continued once I was conscious again.

I had trouble communicating due to my trach, so they often had to run interference for me with the overstretched nursing staff. Joella used to be a respiratory therapist, so her medical training often came in particularly handy. She has her own share of physical impairments, especially her back back and fibromyalgia, which cause her considerable pain. Joella often had to help pull me up in the bed, aggravating her back pain. With her arthritic hands, she detangled my hair after my showers (my long, thick, curly mane was not the kind that was ever meant to be braided). The physical strain on her must have been immense.

Joella's burden only increased when I was forced to leave the nursing home prematurely to prevent the loss of my Kaiser Permanente health insurance. I had a hard time even standing, and walking to the bathroom and back was about the limit of what I could manage.

In the morning, Keith did everything he could to set things out so Joella wouldn't have to get too many things for me, but he had to get to work. He prepared lunch and lifted anything heavy. I hated having to ask Joella to be my servant, but I had no choice. She was sometimes took care of her late husband Colin, who was disabled by heart problems and diabetes, but I doubt she ever thought she would have to be a caregiver for Keith's long-time girlfriend. As I got stronger, she had to do less and less for me, to the point where she was able to go on her usual summer visit to her other two sons and their families, which she had to skip in 2013 due to my coma. She offered to stay, but I assured her I was ready, and I was. In fact, it was good for me. Now, I sometimes bring items for her lunch to her.

Keith, of course, has had the biggest impact on my recovery from the beginning. He went on a fruitless store-to-store quest to purchase a pair of my hard-to-find size 5 shoes for the brace that was supposed to help me walk. That's the very reason I stopped shopping for shoes in stores. In the past, that meant walking to numerous stores in the mall, but this actually delayed my ability to walk at all. It must have been very frustrating for him, and his dedication touched me.

Keith visited in the morning before work, and after work, too, sacrificing sleep and meals along the way. When I was still asleep in the morning, he would leave sweet notes for me. And Keith would often drive to the nursing home on his lunch break to bring me something I needed (a trek Joella often made, as well). You can see why so many nurses told me that Keith was a keeper.

After I was home, he began pushing me up and down steep inclines in my wheelchair during our rehab walks, all the while holding my walker on the back of the wheelchair and sometimes hauling a backpack and a chair for himself, as well, so we could have a picnic while I rested. Keith was often as exhausted as I was after the walk. He's even helped me to collect urine samples for lab tests (though he didn't have to hold the specimen cup underneath me--the plastic "hat" given to me by the lab performed that function). Now that's dedication. He's needed to help me less and less as my walking has improved, but I wouldn't have reached this point without his selfless aid.

The list of thing Keith has done for my recovery, and is still doing, would fill countless blogs. A keeper, indeed. Before my illness, I knew I loved him, of course, but I didn't realize the full depth of his qualities. My love for Keith has only deepened.

People often praise my strength in facing my recovery. And it's true that a weaker person probably would've crumbled at the task. But I didn't get here alone. I was helped by the giving people I was so very fortunate to have around me. There's no way I could thank them enough.

Wednesday, May 6, 2015

Me do it!

When I was a toddler, I had one of those laces with plastic beads that were probably choking hazards, since this was back in the Paleolithic Era. The end had become frayed, probably because I had chewed on it. I couldn't get the bead on and got so frustrated that I was red in the face. My mother attempted to help, but I held the lace tight and said, "Me do it!" Eventually, after much jabbing, I succeeded.

That personality trait has served me well during my recovery. But the opposite tendency often pulls many of us into a negative feedback loop.

Learning why you have a problem, whether it's physical or mental, can be freeing. Certainly, when I was diagnosed with dermatomyositis, that knowledge was crucial. Before the advent of prednisone, DM was often fatal. The treatment I received after the diagnosis arrested my muscle damage and allowed my skin and muscles to begin the healing process.

My ADHD, on the other hand, is a more complicated issue. I've known since childhood that I had a severe case of ADHD. And, I was re-diagnosed in adulthood. Though that knowledge has helped me to work toward mitigating some of the unfortunate tendencies brought about by ADHD, I've too often let it be an excuse that instead held me back from achieving as much as I could. I can't help it because... That knowledge can make you feel like you're fighting against overwhelming odds. This is not just my foible; I've seen this phenomenon in many other people. It's a universal human weakness.

But I think instead of looking at these very real circumstances as excuses, people (myself included) need to start seeing them as the enemy. "How dare you tell me that I can't_____(fill in the blank). I'll show you!"

I never gave walking too much thought until the ability was taken away from me. The stubborn, persistent toddler in me wasn't about to let my body tell me I couldn't do something I've done since I was that age. Me do it!

There are less dramatic ways to defy your body and do what it's telling you is impossible. Yeah, maybe you can't ride on a stationary bike (which is what I use) for an hour. But you can do it for a minute. If you increase that by a minute a week, in sixty weeks you'll be riding for an hour.

I'm starting to sound a bit like a self-help guru. Actually, I think self-help should be just that. And you don't have to pay $500 for a seminar or a video series for that. That's not self-help; it's just surrendering yourself to a huckster who is helping his or her self to your hard-earned money. No, you need to literally help yourself. And all it requires is that you tell your personal challenges, "Me do it!"

Friday, May 1, 2015

I should've had a coma sooner!

Yesterday, I learned that Free Inquiry wants to publish my essay, "Without a Prayer of a Chance." It will most likely appear in their October/November issue, which I'm guessing will come out in September, according to the standard practices of mass-market magazines--the so-called slicks.

As an aside, I just realized that this will be the third work I've had published in a slick. The first was also my first published work, which appeared in American Atheist Magazine. That was a satire of Pat Robertson's presidential campaign in the form of Psalm 23 called, "The Psalm of Pat Robertson." Yep, it was that long ago.

Yeah though I walk through the halls of Congress, I will fear no Democrats, for Thou art with me. Thy rod and my Chief of Staff will comfort me.

As you can see, I've been a skeptic and an atheist for a long time. And though I've only started writing non-fiction since my coma, many of my satirical short stories have had a skeptical slant. Of the stories featured by the New Short Fiction Series, which was then hosted by the Beverly Hills Library (but is now sponsored by the Pasadena Arts Council), only one of them wasn't really skeptical, the title story, "Zombies from the Vast Wasteland."

I guess you could argue that the one satirizing Santa Claus, "Santascam," doesn't count because most adults don't believe in him anymore. I stopped believing early, though. I was four when--sitting on Santa's lap--I looked up and noticed there was a gap between his beard and his face. The realization that his beard was fake shocked me to my little core. And if his beard was fake, then so was he. I further realized that this meant that not only was he a fake, but all the other Santas in all the other malls were also fake, as I put it to my mother. I don't know if I also wondered how could he be in all those malls at the same time, in the first place, but it seems like a logical inference. But then, I was only four.

I reported these observations to my mother in high dudgeon. I was outraged at this fraud! My mother was impressed by my logic. And since she had only been going along with an idea I picked up in nursery school (she was not only an agnostic, but Jewish, as well), she wasn't inclined to try to convince me otherwise. Instead, she told me that I was right, but I shouldn't tell the other kids at nursery school so I wouldn't spoil it for them.

Another story featured by the New Short Fiction Series was "Somebody's Gotta Do It." That was an imaginary interview with God conducted by an atheist. I've long taken the view that it was best to start at the top and work your way downward when submitting your work. Thus, I submitted the story to The New Yorker. I wasn't really expecting them to accept it, of course. Still, it was worth a shot. So, I wasn't exactly shocked when I received the manuscript back from them. What was surprising was that it had received a personal rejection. Even small magazines tend to give only form rejections. "Sorry and thanks. Try again," was what it said. Those are hardly effusive words, which were undoubtedly written by a slush pile reader. But whoever he or she was, a New Yorker slush pile reader! thanked me for my submission and told me to try again. A magazine like that is inundated with submissions, most of which are dreck. They don't ask you to submit again lightly. I was just starting out with my writing, and that was a huge inspiration for me. That told me I had some real talent.

It was my confidence in my writing ability that encouraged me to submit my work to Skeptical Inquirer and Free Inquiry, even though I had never written nonfiction before. Though I deliberately slanted "Covert Cognition: My So-Called Near-Death Experience" toward Skeptical Inquirer, I simply knew that "Without a Prayer of a Chance" was the sort of thing Free Inquiry tends to publish. So far, I'm two for two regarding my submissions to skeptical and humanist magazines. That's a far higher success rate than I've had with my fiction submissions. I like this nonfiction thing! Before my recent illnesses, I had no reason to branch out into nonfiction. I enjoy writing fiction enormously, but I love writing of any kind.

Among the numerous positive things that have come from my strokes and coma, you have to list that I'm now writing more now than ever. This blog is part of that creative flowering. And, I already have two works that will be coming out in mass-market publications in the next few months: My first article and my first essay. By the time both have appeared, a sizeable chunk of the skeptical community will know my story. I now have a whole new audience of like-minded individuals for my writing.

As I've been joking, I should've had a coma sooner!

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Coma Girl

Coma Girl

Not a miracle recovery, but a miracle of modern medicine

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

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

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