The Three Faces of Steph

My room in Skilled Nursing, where I was immediately whisked after my trach was removed, was freezing! Note how thin my hair had already gotten. This photo was soon before I left the nursing home.

Google's new photo-storing service employs facial recognition algorithms to lump photos of people together automatically. It's a work in progress. Indeed, like something out of science fiction, it thinks I'm three people.

The first Stephanie consists of my BC photos (Before Coma). The second Stephanie is comprised of my coma and nursing home pics. The final me is the current one; all of those pictures were taken after I came back from the nursing home.

Now, you might think that it's only gauging this based on my hair, since it went from long to braided to short. But perhaps Google Photos is onto something deeper.

At Donnafugata Castle in Sicily, two individuals with full manes.

Stephanie One had only recently been diagnosed with dermatomyositis. Though her shoulders were still weak from the DM proximal muscle damage, she was reluctant to cut her long, thick, curly hair short, even though it was so hard to wash and style, because it looked really nice and she got many compliments on it. Though the muscle damage in her hips, buttocks, and legs had improved considerably, she was pleased that her dermatologist put her on a significantly increased dose of prednisone, since the higher dose was clearly making her stronger, and she was afraid that she was still too weak to walk through the ruins of Sicily that beckoned to her. Even so, when Keith and Stephanie arrived in Sicily, her legs kept collapsing as she attempted to board the steep steps on tourist buses and the Mt. Etna funicular. She had also lost so much weight during her illness that she needed the prednisone to help her regain the weight she had lost from her already skinny frame. She had a license to make Sicily an all-you-can-eat buffet!

But the strong prednisone dose weakened Stephanie One's immune system so seriously that she caught Legionnaires' disease and listeria while in Sicily. The gastro-intestinal symptoms of the listeriosis presented themselves immediately and are best left to the imagination. But the Legionnaires' disease triggered a severe case of sepsis, which dropped her blood pressure so low that she experience a series of strokes on both sides of her brain, causing her to fall into a six-week coma. Thus, she morphed into Stephanie 2.0, who came about as close to dying as you can get without actually "passing over," as believers like to say. She lost further weight on the liquid diet being pumped into her system. When she awoke, it was many weeks before she was allowed to eat solid food again. Her tangle-prone hair was repeatedly braided and rebraided during this period to keep it looking neat. Brushing is out of the question when you can barely use your arms or even lift your head.

When Stephanie Clone Three got home from the nursing home, she was forced to cut her now-scraggly hair short because she had lost so much of it while she was still Stephanie, the Sequel, due to all the detangling and rebraiding, plus weakened hair from the respiratory distress suffered during the coma.

Keith put her on a high-calorie diet because she was starting to look like a Holocaust victim. That worked all too well, as the notorious weight-gain side-effect of prednisone finally kicked in. Her normally thin, angular face rounded and her stomach began protruding--yet more prednisone side effects, aided by the weight gain. But her hair regained its naturally unnatural thickness. During this time, her nonfiction writing about her recovery began to be accepted by major publications.

Who will Stephanie Mark Four be? Well, the difference may be too subtle for Google Photos to detect, but finally free of the curse of prednisone, her weight edges ever downward as her face continues to shed the round "moon face" caused by the corticosteroid. Ditto her "pregnant belly," which birthed no joy. But those had already shrunk considerably, anyway. Stephanie Three is finally starting to resemble Stephanie Prime--the "normal" one, relatively speaking, before even the DM.

Stephanie Three is expecting her feature article to appear any day now in Skeptical Inquirer. She's also finished her latest essay for the humanist market, "Sympathy for the Devil-Believers," and she's about to send it out. Her essay, "Without a Prayer of a Chance," is tentatively scheduled for the October/November issue of Free Inquiry. So, even though Stephanie Clone Four might not look that different from her previous iteration, by the time she appears, the story of all four Stephanies will be finally out. And then there's the new essay about her DM, not to mention the memoir she's now preparing to write....

Living with loss

Writing responses to my FOTMD friends in the nursing home. There were countless typos in my posts because it was so hard for me to hold the stylus at first.

When you are a pet owner, you know that they will inevitably break your heart by dying. You will always feel a pang of loss when you think of them, and it never gets any easier, no matter how many pets you lose. But that doesn't stop you from getting a new pet to fill that missing place in your heart. You know that the love you will give and the affection you will receive far outweighs the unavoidable pain at the end.

It's okay; that was just a metaphor for life. This is not a sappy homage to a lost pet, so put down that Kleenex!  

Living means learning to accept loss. Love affairs end; parents die. Some people crumble, but most soldier on. I've talked about how my resilience has aided in my recovery before. It has helped to deal with my lost abilities and the periodic setbacks along the way.

My first loss was of course my ability to walk. I guess that one wasn't hard to accept because I didn't have much choice in the matter. Feeling sorry for myself wouldn't have helped me to walk, obviously, so all I could do was try as hard as I could in my physical therapy.

I had been suffering from loss of equilibrium since I awoke from the coma. Since I couldn't walk, it was most apparent in the tilt-a-while sensation I felt when I was turned over in bed to prevent bedsores. When I finally started walking, it felt like mal debarquement syndrome--a extended bout of vertigo triggered by boat or plane travel--which I had been experiencing in Sicily, probably triggered by the twisty-turny roads when we stayed on Mt. Etna. My past bouts of mal debarquement had lasted months, so I wasn't that concerned about it. But after I got out of the nursing home and was able to see a neurologist, she told me that my vertigo was actually caused by stroke damage. This was a kind of second loss, since I had previously thought that I hadn't suffered any damage from the strokes. Though my vertigo has improved--from healing and also balance exercises--I still suffer from lack of balance. My neurologist thinks it will eventually go away completely, however.

My next loss came as I was preparing to return home on a furlough to work out any kinks in coping with my extremely limited mobility. Keith was forced to tell me that my cat Klaatu had died a few months before. Sorry, I did say this wasn't going to be about dead pets, but this is only a few paragraphs, and I promise it won't be sappy! He hadn't told me because I had enough to deal with trying to relearn how to walk or even sit unsupported.

Klaatu died suddenly, perhaps of a heart attack, so at least she didn't suffer. She always had an intense case of separation anxiety, so I had been eager to get back home to reassure her that I hadn't abandoned her, after leaving her for a full month on our trip to Sicily. Now she would never know. I couldn't stop crying about it. Sniff. Where is that Kleenex? Sorry again--I swear that's the last time! Of course, I knew that she wouldn't have understood that I couldn't help leaving home again after only a few days, but at least I would've been there for her once more. Keith told me that I paid a lot of attention to her in those few days home. I can't remember that time well because I became mentally altered as I developed sepsis. It was the sepsis that caused the strokes which led to my six-week coma.

Next came the hair loss due to the acute respiratory distress syndrome I suffered during the coma, along with the continual braiding and rebraided in the nursing home. I previous chronicled this sad tale in this blog. Though my hair is still fairly short, it's now back to its unnaturally thick glory. I decided not to grow it long again because I like not having to spend hours futzing with it to keep my hair from looking like a fright wig.

My most recent loss happened when the owner of Friends of the Mountain Dulcimer banned me from the website. FOTMD was the place where my friends had been lending me their support and prayers throughout my recovery. The whole story of why she banned me would take too long to go into here. This is the Reader's Digest version: Strumelia, as the owner calls herself, was at one point one of the people offering me support. Perhaps she eventually got tired of the length of my recovery. Apparently, she began to feel that I was trying to hijack threads to talk about my illness, as if that would even be a goal for me. This stemmed from a conversation that started with a friend referring to her rheumatoid arthritis in a video meant to raise awareness of lupus. I mentioned my own autoimmune disease. Though my coma and other related subjects were discussed, the conversation also drifted into depression and other hidden illness. Strumelia forbade from discussing my illnesses at all after that, which I found offensive. This is who I am now. Would she have banned me from mentioning that I'm Jewish? I said at the time that the whole kerfluffle stemmed from a colossal series of misunderstandings. I thought things were simmering down before she suddenly banned me.

I posted about this in a couple of dulcimer groups on Facebook, since that was the most efficient way to inform my Facebook dulcimer friends. I spent the rest of the day fielding IMs. I was flooded with support, not only from my friends, but many strangers, as well. This helped tremendously in dealing with my sense of loss. It felt like a death when Strumelia banned me. What's more, all my emails pertaining to my coma and the early days of my dermatomyositis vanished when she chose the nuclear option. I needed them for my memoir. An era of my life has not only passed, it was obliterated. Fortunately, I still have the memories, as well as the two threads where I received all that wonderfully kind support, which I had previously copied. I will soon be posting the first thread in this blog, which among other things chronicled my first steps in the nursing home. The threads were the precursor to this blog.

As in all my other losses, I will survive this, too. Just like a beloved pet, FOTMD has left a hole in my heart, but I will always love my FOTMD friends.

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?

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.

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.

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!"

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!