Fickle as Want

Rereading the paper afterward, I found the authors warning that doctors would sometimes have to go farther than just interpreting people’s wishes in order to serve their needs. Wants are fickle. And everyone has what philosophers call “second-order desires”–desires about our desires. We may wish, for instance, to be less impulsive, more healthy, less controlled by primitive desires like fear or hunger, more faithful to larger goals. Doctors who listen to only the momentary, first-order desires may not be serving their patients’ real wishes, after all….At some point, therefore, it becomes not only right but also necessary for a doctor to deliberate with people on their larger goals, to even challenge them to rethink ill-considered priorities and beliefs.

–Atul Gawande, Being Mortal

Remembering May

blue flower

The cold, creeping damp. Wearing socks in what should be sockless weather. Getting sick with a cough for two weeks. Green phlegm. My son getting sick. My husband getting sick.

My husband home sick on my birthday.

My birthday. My son’s birthday. My son’s birthday party at one of his favorite local party venues. Realizing that in a couple of years–if not sooner–he’s going to outgrow his favorite local party venue. Realizing the days are long but the years are short.

Eating enchiladas for my birthday, even though I’m getting a cough and my husband is sick in the cold, creeping damp. Wishing I’d gotten a margarita, too.

The farm. Taking my mother to the farm. Traveling with goats in the pouring rain. Being entranced by a farm equipment museum, possibly because it was raining. Watching the nanny goat and her kids huddle under a tree to keep dry.

Exhaustion several days running. A lost day or two. Walking in a mental mist from one activity to the next. Losing track of days and tasks. Losing the desire to speak or write anything down. Keeping communications to small packets of words doled out only when necessary. Investing a lot of time in coloring.

Losing track of who the hell I am anymore. Realizing that these days, most of the time, I’d much rather be learning to draw trees.

 

Chronic Illness and Writing: Linda Chavers

There’s a particular sense of urgency to my writing. Cognitive dysfunction and decline are signatures of MS and I don’t know if or when these will start, if they haven’t already. Writing is a way I tell the world I was here, I mattered. Please listen to me while I still have something to say.

–Linda Chavers, “34 Things I Wish Multiple Sclerosis Hadn’t Shown Me

Let’s Look at Pictures: Back from Vegas Edition

First, I should say that I can barely put words together right now. I felt this slide into speechlessness and fatigue happen right after dinner. And lemme tell ya: it sucks. I know, I know, that’s my mantra these days. But I’ve always loved being busy, doing everything, absorbing the whole world and then finding more to do.

Funny–that’s sort of like Las Vegas. It’s probably why I love that absurd party town in the desert, that fist in God’s eye, that irrational need for 24-hour pleasure gone just a little further into batshit-crazy territory.

It doesn’t make sense that I love Vegas as much as I do. I’m not a gambler or a heavy drinker. I tend not to like loud music or tacky advertising or, well, people in general. I’m an introvert who flirts with the autism spectrum. I like the feeling of being all alone, a guru on a hill.

But then there’s Vegas, where everything I dislike about the outside world meshes in such a beautiful rush that I can’t help getting caught up in it. I love the flow of bodies on the Strip. I love the chaos of meandering vacationers and conventioneers. I love that you can find another universe across the street, even though you can’t escape the same damned slot machines burbling away, or the identical alcoholic slushy bars, or the two or three companies that own, like, 90% of all the primo casino real estate. (The MGM group owns something like 15 different casinos. Where’s a good old-fashioned trust-breaker when you need one?)

I love taking it all in. It’s a bombastic shriek of cheesy culture all crammed together in one spot. And then if you want, you can take off into the desert where there’s nothing but mountains and rock and Joshua trees and miles and miles of empty space.

262

067

061

 

 

076

113

 

170

So I’m back from a 10-day Vegas vacation. On top of everything else, I’m guessing I have the post-vacation blues.

My Life on Lupus: My First Acupuncture

Imagine this cotton ball is the top of my head.

Dear God, I’m a slow blogger. I’ve just figured out that I’ve posted exactly zero entries for July 2015. All those witty observations and enlightened ruminations I meant to put into blog form (I swear!) tragically never made it onto the computer, and I feel kinda crappy about that. What kind of writer am I if I’m not constantly bombarding the Interwebs with evidence of my existence?

(Yeah, don’t answer that, anybody. Especially certain arrogant representations of certain iconic authors, in action-figure form, currently sitting on my bookshelf.)

Granted, I have been through about a month of trying new meds, flaking out on them, and recovering from the flake-out. Which brings me to today, and this very post about acupuncture and Me Trying It Out. You see, after the fourth medication that amped up my anxiety to the point where I was constantly thinking about how I was going to die, I decided that perhaps I ought to try something for the pain in my hands and feet that didn’t involve changing my body chemistry. (Actually, most of my new meds of recent weeks have been for my exciting, recently diagnosed esssential tremor, but we’ll set that fact aside for the moment.) And since I’m a bit leery of massage therapy after a blood clot grew in my head right above a spot in my neck that a massage therapist in Iowa had earlier pinched the hell out of, I decided to try acupuncture. Other reasons for giving acupuncture a go: 1) I’ve been stuck with so many needles in 17 years that the needle fear center of my brain has withered away to nothing; 2) a few weeks back, when I got an EMG test to see how the nerves in my feet were doing, the doctors gave me little electric shocks through tiny acupuncture-like needles, and after the initial jolt of pain the zapping kinda felt good; and 3) I desperately want someone else to rub or press or stab away the pain in my body.

So this morning, I went to an appointment that I thought would be a regular old intake session but was, in fact, my first foray into Chinese medicine. Two rounds of needles: one with me face down, the other with me lying on my back. A heated bio mat was involved, as well as an eye pillow, which might have been more relaxing than the needles themselves. One thing that struck me as odd was that there wasn’t a lot of activity involved with the process. When you get a massage, obviously the massage therapist is there in the room with you, constantly oiling you down and manipulating your various muscles. With the needle treatment, the acupuncturist sticks you in a few places and leaves the room–I guess because the needles themselves are supposed to be doing all the work.

And it does feel like something was done to my body, something more than the penetration of my skin with sharp metal threads. The sensation is sort of like someone took certain of my muscles on a long marathon. Very specific areas of my body feel energized and sore at the same time. There have also been little itches and twitches throughout the day, little pricks of pain, like my whole body is in the process of bubbling. I don’t know how else to describe it, and I don’t know what the sensations mean. I don’t know what I’m going to feel like tomorrow. Maybe that’s the real point of the process: bringing the present into focus, so you can be mindful of your true reality.

I hope tomorrow I feel a tiny smidge better.

The Blind Can See, and Other Miracles

Health shall live free, and sickness freely die.

 

Let me not to the marriage of true minds

Admit impediments. Love is not love

Which alters when it alteration finds,

Or bends with the remover to remove.

–You-know-who

Wow, what a difference a couple of days makes. Since my life is a perpetual chemistry experiment, I figured out that a lot of my anxiety was coming from a new pill that I’m now coming off of. And then, just in time for me to start feeling like the world isn’t such a terrifying place, we get news that bad writing doesn’t mean everyone will lose their health insurance AND people who don’t think any two consenting adults should have the right to get married can suck it up or move to Russia. (Yes, all you liberals out there, the world is such a crazy place, we can now tell right-wing ideologues that Russia is the place for them.)

Even Mighty Tiny Bill is celebrating.

“Scalia, thou’rt a villain. And a beef-witted, barren-spirited villain at that.”

 I personally would like to hold on to this feeling of amazement and wonder at the world for as long as it lasts. So here’s yet another antidote to sliding back into Internet Outrage too quickly (or wallowing too deeply in Internet Schadenfreude): the podcast Invisibilia aired an episode that explores how blind people can learn to see through–get ready, Fickle Readers–echolocation. I swear this is completely true. I listened to the program on my way back and forth from one of my many doctor’s appointments, part of the medical structure keeping me alive, moving forward, and sane, and I kid you not, I started thinking differently about my whole life. An absolute Must Listen To for anyone who feels like the world is entirely populated by stop signs, roadblocks, and sadistic, greedy monsters.

Thanks, Alix and Lulu, for your wonderful insight into what humans can be, instead of all the things they can’t.

And thanks to the God of Stories for making this week one for the record books.