Saturday, December 25, 2010

Snowman on a Ledge

So glad it's a white Christmas here in Ohio. I made this snowman from the snow on my window ledge last week. Peppercorn eyes, carrot nose, two arms made out of pretzels...

He's melted away now but I like looking at the picture. Merry Christmas and Happy Holidays everyone, and take it easy!

Tuesday, December 21, 2010


"Warning: Music Theory Ahead - Circle of Fifths" I'd been reading the first two chapters of The Only Basic Piano Instruction Book You'll Ever Need. I put it down. It was hard enough reading the basic stuff I already knew. Has my brain always wanted to shut down like this at the slightest onset of stress or difficulty? It's hard to imagine it was ever different, but it was, it definitely was.

My sister comes home and talks excitedly about what classes she'll be taking for her final semester of grad school. My brother, in his last year as an undergrad, laments the rigorous grad school application process. My dad spends most the day programming the final touches on his iPhone calculator app. I miss learning things.

I've been staying with my parents for a month now. I was feeling better when I set out, so instead of the usual herbal teas for colds and sore throats I packed yummy chocolate teas and caffeinated green teas. I had a separate suitcase just for books. (Getting a kindle this Christmas I think...) But as soon as I got home I got sick and had to have my dad run out to the health food store and buy me more throat comfort tea. A month later and I still haven't really recovered. My mom and sister are on their way home from taking Grandma out for a Christmas lunch. I'm sorry I missed it but I was afraid to go out in the cold feeling like this. And really, it would just be imprudent.

Haven't made as much progress in my books as I'd hoped. Haven't even started The Broom of the System, which I chose just because it takes place in Cleveland. Or so I heard somewhere, but when I mentioned it to my boyfriend who read it he wasn't sure. He's currently reading DFW's Everything and More: A Compact History of Infinity, the rare literary book that requires you to remember your college math. A computer science major, he's getting through it but slowly and with difficulty. I know I will never try. My math education ended my junior year when I failed trig. Or was it the year before when I slept through every Algebra II class? (I felt terribly guilty about it, but it was after lunch, and still now most days I don't have the energy to digest food and stay awake at the same time.) It's a little sad because one of my most vivid childhood memories is my dad telling his little girl, who back then was a good math student, to make sure to take calculus because it was what "separated the high paying jobs from the low paying jobs"

My regrets about never learning calculus are small. I did love physics. I think I can mark the strike of my CFS by my grades in physics, sophomore year, A's first two semesters, and C's and D's the last two. I remember everything going foggy and blaming it on the student teacher not being very good. I remember my professor asking me in front of the whole class, mostly seniors, if I had "sophomoreitis". And I also remember the day he pointed a video camera at us connected to a TV and everyone laughed because my face was the only one you couldn't make out. I was all a white blur in the low resolution with my pale skin and blonde hair.

Physics was fun but I was never going to be a physicist, CFS or not. I would have taken calculus though, it would've looked good on my college applications, and I would actually know what my dad is talking about when he tries to explain to me all the advantages of his iPhone calculator app. That would be nice.

So when I got to the Circle of Fifths Warning, I put the book down. Learning the Circle of Fifths and all that theory was exactly why I bought the book, but today's not the day. There will only be one or two windows of opportunity in the next month or two where my brain and body are ready and willing and normal enough and I can sit at a piano and try and learn. But not today.

Instead I pick up Unbroken. It was not in my suitcase of books. Our town has an independent bookstore and when I first got home I asked my mom to take me there so I could get a birthday card to send to my boyfriend. I didn't want to buy anymore books. My recent pilgrimages to Elliott Bay Book's and Powell's left me with more than enough. Plus I had asked for that Kindle for Christmas. But then I saw the store owners had put it on the main display. It was the only featured book, my heart melted a little. Not that they knew about her CFS and did it out of the goodness of their hearts, they did it because they knew it would sell, be a good Christmas gift etc. But still. I picked it up and mumbled something about having to buy it. My mom asked why, and I told her about how the author had CFS and I felt some kind of duty, affinity. "I'll buy it for you" she said, before I was finished trying to explain.

My bookmark is only on page 11. I flip to the back cover. All the reviews are for Seabiscuit, except the one on top, from Rebecca Skloot, "author of The Immortal Life of Henrietta Lacks" which I was excited to see featured at both Powell's and Elliott Bay and on pretty much every top 10 list this year. I remember turning on NPR and hearing an interview with the author back in February when it came out, but I didn't catch her name. If I did though I would have immediately assumed she was related to Floyd Skloot. (How many Skloots can there be?) I don't remember exactly which of his contributions to Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome made such an impression on me that I googled him, but, I had. (I can't look now, the books' at my Los Angeles apartment.)

I read the author bio for Laura Hillenbrand which mostly lists all the accolades for Seabiscuit and reminds you that it was made into a Academy Award nominated movie. It mentions her charity work. And it mentions her New Yorker article "A Sudden Illness" won the 2004 National Magazine Award. It doesn't mention CFS. It's on a need to know basis, really, isn't it? Her fatigued fan base knows what the "sudden illness" is. And we know why the advanced review is from Rebecca Skloot, what same circle they are in.

So far Unbroken is a joy to read but at the pace I'm going I know I won't be done by Christmas, which is good. I'll have it to read on the plane ride home. If only Kindle gave discounts for books if you could prove you already owned a hard copy. Oh well. I will carry this heavy book onto a plane with me.

I'm drinking delicious Throat Comfort tea now, hoping it will help my broken sore throat. It's hard because I've been singing so much lately, before the sore throats, that is. I'm used to singing every chance I am alone. Every shower, every car ride. Sometimes, elevators. The last year and a half though I have been too tired to sing at all. Too tired to sing! It isn't easy, alone in my apartment, to listen to my favorite songs and keep quiet. But it's not like I have a choice. My lungs are heavy. My voice is small. And if I dare to try, I have to give up after a few lines.

As I've noted previously though, November was a good month. One day maybe during the third week, I sat down at my desk in my swivel chair and drank two cups of heavily caffeinated chocolate tea with every intention to write 3,000 words to catch up for NaNoWriMo. I didn't get a word written though. I played a song that was in my head, and realized I had more than enough energy to sing along, and loud. And that was what I did for the next hour. I sat in my swivel chair and swiveled around and sang along for a whole delirious hour.

Less than a week later, sore throat, coughing, congestion, fever. And I think, it always seems like whenever I sing too much I get sick. And it makes me sad because I don't want to stop singing. I've been noticing this possible pattern for years now. And only this time did it occur to me, maybe it wasn't the singing that caused me to get sick, maybe I was singing because I was sick.

In almost every beginning children's piano book there will be an arrangement of a Tarantella. There was in two of mine. And they will say that it was a dance the Italian villagers did when they were bit by tarantulas to try and sweat the poison out of their system. Later I heard somewhere that it was actually the poison that made them go crazy and compelled them to dance. I thought I should get my facts straight before I blogged about it, but my Wikipedia research was inconclusive. The main article on Tarantella said it was both, the bite caused a hysterical condition called "Tarantnism" "the symptoms of which were an irresistible need for a wild and rapid whirling motion bringing the victim to the point of exhaustion. For a long time, the local population believed that the only way to suppress the symptoms and to cure the bite was by using a very rhythmic and fast music."

But when I click on "Tarantintism", the wiki-authors caution that there are strong suggestions that "there is no organic cause for the heightened excitability and restlessness and that gripped the victims." And that "The phenomenon of tarantism is consistent with mass psychogenic illness."

I get annoyed and stop reading.

Thursday, December 9, 2010

a poor go-to-sleeper

Going through my old journals last night around 3am. Found this quote I copied from about two years ago when I was reading Vladimir Nabokov's memoir. I liked it so much I typed it all out:

All my life I have been a poor go-to-sleeper. People in trains, who lay their newspaper aside, fold their silly arms, and immediately, with an offensive familiarity of demeanor, start snoring, amaze me as much as the uninhibited chap who cozily defecates in the presence of a chatty tubber, or participates in huge demonstration, or joins some union in order to dissolve in it. Sleep is the most moronic fraternity in the world, with the heavies dues and the crudest rituals. It is a mental torture I find debasing. The strain and drain of composition often force me, alas, to swallow a strong pill that gives me an hour or two of frightful nightmares or even to accept the comic relief of a midday snooze, the way a senile rake might totter, to the nearest euthanasium; but I simply cannot get used to the nightly betrayal of reason, humanity, genius. No matter how great my weariness, the wrench of parting with consciousness is unspeakably repulsive to me. I loathe Somnus, that black-masked herdsman binding me to the block; and if in the course of years, with the approach of a far more thorough and still more risible disintegration, which nowanights, I confess, detracts much from the routine terrors of sleep, I have grown so accustomed to my bedtime ordeal as almost to swagger while the familiar ax is coming out of its great velvet-lined double-base case, initially I had no such comfort or defense; I had nothing-except one token light in the potentially refulgent chandelier of Mademoiselle's bedroom, whose door, by our family doctor's decree (I salute you, Dr. Sokolov!) remained slightly ajar. Its vertical line of lambency (Which a child's tears could transform into dazzling rays of compassion) was something I could cling to, since in absolute darkness my head would swim and my mind melt in a travesty of the death struggle.

Sunday, December 5, 2010

Joint Hypermobility

I was excited to see this article by Maija Haavisto about Joint Hypermobility and CFS/ME. It's the first time I've seen them mentioned together, and I've been wondering about it for awhile.

About five years ago my left shoulder started making loud snapping and clicking noises whenever I moved it. Like my shoulder blade was smacking against my ribs. It was weird. My doctor also said it was weird and referred me to an orthopedic doctor. It was a long drive but I was worried my arm was going to fall off soon, so I went.

I read baseball magazines in the exam room while I waited for the doctor. That's all there was and they were everywhere. I picked one that had an article about the Cleveland Indians on the cover, it made me feel at home.

He came in and I lay down on the table and he put one hand on my shoulder and one on my wrist and moved my arm around to test the range of motion. Apparently he was impressed.

"Look at that! Do you play softball?"

"I did when I was a kid."

"Were you a pitcher? I bet you could throw really hard. See how far your arm comes back?"

"That's far?"


"Well, I guess I threw pretty hard..."

"I wish mine went back that far! Were you always flexible as a kid? Double jointed?"

"No not at all! I was always the least flexible person in my dance class. I tried so hard to stretch every day but..."

"Usually this kind of injury happens to people who are hyperflexible."

"Well that's not me. Is there anything I can do about it?"

He said he'd write me a prescription for physical therapy which helped a high percentage of the time. There was also a surgery option but I didn't want to think about it yet. At the time it wasn't very painful.

He gave me a printout briefly explaining my diagnosis of "hypermobility" It said it usually happened to athletes and the elderly.

"So how did it happen to me?"

"I don't know. Why do you have blonde hair and I have brown?"

I asked if it could have anything to do with my CFS, maybe poor circulation, but he waved me off. "No! How could this have anything to do with CFS?"

I thought about asking, "Do you know what CFS is?" but didn't bother.

I never used my prescription for physical therapy. I told him I was at USC, and he told me to go to one of the sports physical therapists there. This made no sense to me. Whatever treatment I got would really for people who had "injuries" as in, you could remember a specific time when you injured it. This had happened gradually and with no outside cause, so I wasn't sure if physical therapy could help any. I was convinced it was some kind of insidious symptom of the CFS.

Now I'm fortunate enough to be working with a physical therapist in my neighborhood who's been through CFS. The click is still there but it's gotten a little better, along with the pain and soreness.

When I got really bad, when I couldn't eat and stayed in bed all the time, all of my joints clicked, my other shoulders, my elbows, my knees, my hips, my neck, and finally I could feel individual vertebrae clicking in my spine when I stood up. It freaked me out. Thank god it's gotten a lot better and now it's mostly just my shoulders and elbows. And sometimes the neck, which freaks me out the most. I make a point never to let my head hang backwards, in case it snaps when I pull it up again. It doesn't really hurt, but it's...weird.

Friday, December 3, 2010

Dear Sugar

This Dear Sugar column made me cry. This woman was in the process of breaking up with her boyfriend, when someone broke into their apartment, attacked her, and left her paralyzed. They stayed together, they got married. He couldn't leave her in a nursing home. (Though he tried.) Now she's miserable. She doesn't know if the relationship is right, but leaving him is not an option, she has nowhere else to go.

Sugar's advice is to stay with him and try and make it work. All the commenters agree, except one, who is also disabled:

"I am disabled as well and this is very very very bad advice. We don’t have to put up with unhappiness such as the writer describes due to circumstance we find ourselves in. You basically tell her she’s weak and she has no CHOICE but to make the most of a situation that is not making either partner remotely happy."

I wish the above commenter was right, but I don't know. That's why I haven't left a comment of my own.