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.

Hair today, gone tomorrow

Two figures with full manes at Donnafugata Castle in Sicily.

Here is the long, sad, tale of my hair. It starts when I was 10, trick-or-treating on a windy day. [This is actually about my recovery...eventually.] I was dressed as a vampire, with a cape that was actually a heavy coat with the sleeves tucked inside. I also had green make-up smeared all over my face and glow-in-the-dark fangs, with blood dripping down them onto my chin. But I was still self-conscious enough about my bushy, frizzy, curly hair that I brushed and futzed with it to calm it down as best I could. In its natural state, I have what is euphemistically known as a Jewfro.

So, I headed out with my goodie bag. As I was nearing the end of my circuit, I came to a house. These were the days when kids could go out by themselves on Halloween without their parents being charged with child abuse, mind you, so I was alone. I rang the doorbell, and a lady gave me some candy. As I was about to leave, the woman said, "Oh, and by the way, I love your wig!" She meant it as a compliment, and she probably didn't even notice that I was crying as I headed back home.

It took me years to realize that my hair looked a thousand times better if I only brushed it when it was wet, then let it dry into long ringlets. That reduces the volume and produces nicely defined curls. I started adding gel later. Before my coma, I used to get a lot of compliments on my hair, something I never thought would happen in the Jewfro years.

But during my coma, my long hair was becoming a tangled mess. Curly hair tangles worse than straight hair. My mother used to use an electric detangler on my hair when I was a kid. To me it was a torture device. Now that was child abuse! But--flash-forward to when I was in the coma--they were going to chop off my hair. I suppose that would've been my mother's only choice if she hadn't used the detangler. But a kind nurse named Teresa saved my long tresses by braiding it after her shift ended. She wasn't even assigned to me.

Once I awoke from my coma, Teresa told me that she could tell that her detangling efforts hurt me because I would flinch. She rebraided my hair a few times after that, and she did such a great job that the braids held for weeks after I awakened.

Teresa working on the final touches.

When I returned to the ICU after my second bout of Legionnaires' disease, Teresa noticed that I had cut my hair short. I didn't have the heart to tell her that it had thinned so much that I was forced to have it cut. I had thought the thinning was from the continual braiding and rebraiding in the nursing home. Apparently a lot of the CNAs know how to do that for the patients to help keep their hair from looking too messy. But, from my research, it seems that many patients who suffer from acute respiratory distress syndrome (ARDS) like I did later lose their hair or experience thinning afterward. They also develop Beau's lines (aka Beau's ridges) in their fingernails, as I did as well. So, the braiding probably only accelerated the hair loss and not until after I entered the nursing home, so it definitely wasn't Teresa's fault. But I didn't want her to think that it was. Thanks to her, I didn't wake up shorn like a sheep. At the time, it looked like I wouldn't even survive. She stayed late after her shift to save the hair of a woman she wasn't assigned to who was probably going to die or be left irreparably brain-damaged, anyway. I owe her a dept of gratitude.

Beau's ridges (no, not Beau Bridges)

As much as I despised my naturally big hair, I disliked having such a paltry, straggly mane even more. Still, I hated having to cut it short. I cried thinking about the prospect, but I knew I had no choice. I searched through Yelp until I found a parlor known for being good with curly hair that was close by, Trilogy Hair Studio. Supercuts, where I used to get my simple straight cut, would not do. Kaylie has been doing a great job on my hair, guiding me through the growing out process every three months. She's been surprised and amazed at how thick my hair has become. I wasn't.

Along the way, I've decided that I like not having to spend as much time as I used to detangling and washing my hair, not to mention touching up my frizzed-up curls. That would've been a real trial during my recovery. And I have to admit that it does look cute at its current medium/short length.

It's getting closer to its eventual length now. One thing is certain. It will never be called a fright wig again.

Outside of Trilogy Hair Studio after my latest haircut.