A very special “Breaking Bad”

October 10th, 2011

When most television shows decide to do a very special episode, the guy in the wheelchair gets to impart life lessons.

When “Breaking Bad” does a very special episode, the guy in the wheelchair imparts death. Grand-Guignol-style death, climaxing in one of the most shocking scenes ever to jolt this horror fan to the edge of her seat.

Throughout season four, drug kingpin, entrepreneur, and philanthropist Gustavo Fring has been portrayed as near-superhuman, a man of awesome psychological and physical resilience, a man whose discipline, resolve, and reserve make Captain Picard look like a Chevy Chase character. With cameras everywhere and plans within plans, Gus Fring is in control.

Until his ancient enemy Hector Salamanca, trapped in a wheelchair in the dismal “Casa Tranquila,” takes a last draw on his oxygen tank, stares into Fring’s eyes as his own fill with tears, and taps his finger — the only part of his body he can move voluntarily — on his call bell. Over and over, until the bomb beneath his chair is triggered, and Hector and Gus make their final bad break together.

Hector’s suicide bombing is his most shocking use of power, but not his only one. To lure Gus to Casa Tranquila, Hector sets up a meeting with the DEA. Gus is to think Hector is turning state’s evidence, but once the DEA meeting is set up, Hector’s nurse brings out his letterboard so that he can spell out his message to the agents clustered around the table. She reads each letter aloud, clearly and slowly, and Hector rings his bell when she hits the correct one. Her voice begins to shake with anger and humiliation as he forces her to spell out “S – U – C – K – M – Y ” before the agents stop her. When he begins again with ” F – U ” she is nearly in tears.

People who want power will find a way to get it.

That’s one special lesson “Breaking Bad” has to teach us: Everyone wants power. Control of the story. A seat on the hospital board. Money. Information. A bitchin’ car. Influence. An orderly, well-labeled mineral collection. Clues. A shoplifted tiara.

People with disabilities aren’t immune to the drive for power. They just might have to break a different way in order to get it.

Hector’s power lies in the capacity of the neglected and disabled elderly to shame, to embarrass the decent. It also lies in his capacity to bring out the sadism of the indecent. Gus, the most disciplined of men, cannot resist the chance to torment the man he believes is helpless. Gus gets about three seconds to absorb the life lesson that this was a mistake before the right side of his face is blown off.

Hector’s is not the only broken body on “Breaking Bad.” The series begins when chemistry teacher Walter White is diagnosed with lung cancer. TV-land tends to be populated by strong, beautiful bodies, bodies that eagerly bend themselves to seduce, to run, to work. On “Breaking Bad,” bodies often don’t help. Bodies get pregnant accidentally. Bodies get injured. Bodies become addicted. Every major character on “Breaking Bad” has been betrayed by their body or brain at this point. Walt’s cancer. Skyler’s unplanned pregnancy. Marie’s mental illness. Jesse’s addiction. Hank’s PTSD and spinal injury. Walt Jr.’s cerebral palsy.

Unlike the others, Walt Jr. was born with his disability. It doesn’t represent waning power, the way Hank’s paralysis or Skyler’s fading sex appeal does. Perhaps because of this, Walt Jr. comes across as one of the least neurotic characters on the show, the one most comfortable in his skin. Disability is relative; Walt Jr. has never known a life without his wrist canes. They don’t diminish his mojo — having to drive a PT Cruiser, Skyler’s idea of a hip hoopty for a 16-year-old male, takes care of that job. Even so, Walt Jr. reacts to the less-than-ideal birthday present with resigned grace. Walt Jr. can absorb an insult to his dignity better than any other man in the show, certainly better than his father can.

With his halting speech and matinee-idol features, Walt Jr. is kind of a Woobie. Is there anything a fan of “Breaking Bad” dreads more than the look in Walt’s anime-huge brown eyes should he ever realize the truth about his father? And yet, after four grueling seasons, it’s hard to believe that the child of two people as smart as Walter and Skyler White hasn’t begun to smell something rotten. We all seek power, we all seek control. Walt Jr. accepts his imperfect body. But he is unwilling to accept the hints that his family might be disrupted and corrupted. For the world to make sense to Walt Jr., his father must be a decent man. For his father to be a decent man, Walt Jr. must learn to rely more heavily on his powers of rationalization than on his powers of observation.

This is what gets people killed in the world of “Breaking Bad.” This may be the only true disability there is: willfully chosen blindness.

Which brings us to Hank Schrader. Originally portrayed as a blowhard and something of a bully, Hank’s abilities as a detective reach their peak when he is shot through the spine and forced into a bad-tempered convalescence. Walt Jr. was born with cerebral palsy, and Hector Salamanca’s near-paralysis was acquired over a long lifetime. Hank was brought down suddenly, in midlife, and wastes much energy on such pointless exercises in power as verbally abusing his wife and obsessing over a mineral collection. The Heisenberg case gives him reason to focus. When he goes to the DEA to present his findings, he takes care to use his cane rather than a walker — he’ll give away as little of his injury as he can. And yet, when he is ready to make his most theatrical pitch, to sell his former colleagues on the notion that Gustavo Fring, apparent friend of law enforcement, is in fact the man they are looking for — he uses that cane to point to the picture of Fring on the wall. Four prongs, nailing his story down. Without that cane, and the injury that necessitated it, Hank never would have seen the truth.

I don’t ever recall seeing an hour of television with three prominently featured characters with disabilities, in which the story itself was not about disability. “Breaking Bad” violates realism in many ways, but it is profoundly realistic in this: that disability is not a metaphor or a trope. It’s something that happens to people. Many people. Most. There are a lot of injured, sick, disabled characters on “Breaking Bad” because there are a lot of injured, sick, disabled people in the world. You can analyze the different ways disability plays out in the show’s themes of power and self-delusion, as I have. You can parse the semiotics of the cane versus the wheelchair, of the deep themes of mobility (physical, geographic, social) that gird the show.

Or, you can simply enjoy the novelty of seeing people with disabilities portrayed. As people. With disabilities. And rivalries, and egos, and loved ones, and memories, and secrets.

What is it with men?

September 30th, 2011

Cary Tennis has a letter today that gets at a gender difference I have long noticed and wondered about:

Although [my husband] refuses to go to a doctor, I know he is very ill. If he goes outside to mow, or even spray weeds, he is sick for days afterward. If he helps vacuum or mop, he is sick again.

He is tired all the time. His feet, knees and one hand swell often. Now, his mouth is sore and his face is swollen. I see to it he eats one real good meal a day. Ever since I have known him he has had chronic diarrhea; he says there is no blood. We cannot make plans to go anywhere or do anything because he spends so much time in the bathroom.

Most of the letters in reply are from women describing similar experiences — some more dramatic, some less so — with their own husbands, boyfriends, or fathers. A handful of men also chime in with their own stories of being (rightly) dragged to doctors or emergency rooms by wives or girlfriends. And a few letters, most clearly from men, argue that the husband should be left alone to make his own choices.

Think about switching the genders on a letter like this. If a husband described his wife this way, wouldn’t you immediately wonder if she didn’t have some sort of mental illness as well? I would. And yet, when it’s the husband, we think, “Oh. One of those guys.” In a man, this behavior is recognizable. We don’t see it as necessarily a sign of a deeper pathology. On some level, it’s just a guy thing.

But why? What’s the link between masculinity and medical self-neglect? We all know men like this. We all have these stories. Maybe some of you are those men. I hope so, because I want to hear from you. I’m not asking you to defend yourself, just tell me what it’s like.

And for those of us analyzing the phenom from without, let’s leapfrog right over facile statements about machismo and fear of vulnerability. It’s easy to blame this on some kind of masculine mystique, but I’ve known plenty of doctor-avoiding men who don’t let gender stereotypes control their lives in any other way, and who aren’t invested in presenting a macho facade. How do we account for them?

Progress at the gym

June 21st, 2011

Hit the gym yesterday for the first time since returning from the Midwest, and my oh my did it feel good. At some point over the last year or two, working out has finally started to feel like a thing I do for myself. Not for my doctor, not for sexist notions of female beauty, not for feminist notions of female strength. For me, because I’m the only one who can do this for myself, and if not now, when? (With apologies to Hillel, who would have been a great personal trainer. Shammai, not so much.)

Most of us pick up dysfunctional messages toward food, exercise, and/or our bodies when we are growing up. One that held me back for a long time was the unconscious belief that if I wasn’t good at exercise, I didn’t have the right to do it. That was certainly what the peers who teased and bullied me for my embarrassingly incompetent attempts at team sports or solo dancing appeared to be suggesting, and going along with their assessment seemed to be the wisest and easiest course of action.

As an adult, of course, I didn’t fear getting a wedgie from the 75-year-old grandmother at my neighborhood co-ed, gay-friendly YMCA featuring water aerobics for the seniors and day care for the stay-at-home-moms. But I still hung on to the notion that taking up space in a gym or scheduling time to work out was something I had to earn. That exercise was a privilege, not a right. So I was prone to hugely overdoing it in an attempt to become as fit as the kind of person who deserved to belong to a gym. Which of course led to burnout and disillusionment when I didn’t transform into Linda Hamilton (the early-1990s touchstone for female kickassery) in 10 days.

I give a lot of credit to my gym, Healthworks, for slowly turning this attitude around. There was never any major “aha” moment, just a gradual realization that exercise doesn’t have to be about self-judging and angst and feelings of painful duty. That it can be, and should be, a place to get away from mental minefields and focus entirely on the moment, the physical, the subjective. I wish it hadn’t taken me quite so long to get there, but I’m glad I did.

Robin Abrahams and the Spectacles of Immersion

January 4th, 2011

The last month of 2010 decided to gift me with two reminders that I am aging: my first white eyebrow hair, and the fact that I need reading glasses to — well, read. (Fortunately, I can see well enough to pluck my eyebrows unaided. Buh-bye, Whitey! Don’t come back, and don’t bring more of your friends!)

I’ve had corrective lenses since I can remember — glasses since third grade or so, and contacts since high school.* So the concept wasn’t exactly unfamiliar to me. And you all know how I love accessories, so I was quick to snap up several sharp pairs of specs: the red rhinestone ones and the leopard frames with pink metal earpieces are my favorites.

But as much as I might enjoy officiously putting on my specs and twirling a freshly sharpened pencil in the air as I begin an editing job, or dramatically divesting myself of them before ordering at a restaurant — and I do — it’s using them for plain old reading at home that I enjoy most. It’s made reading magical again.

I mean, there the book is in front of me, and I can’t make sense of it, and then I put these glasses on, and just like that I am transported! Into 19th-century England, modern-day Westport (v. good, that one), an academy of magic, outer space, ancient Greece, anywhere! Seriously, there is something about putting on the glasses that feels like a ritualistic preparation, making me able to enter the World of the Book. I think I’m reading in an even more immersed fashion than I usually do. Swimming up from the depths of a book feels a little harder now.

What a funny Christmas gift, for someone who has no need of them. A disability that turns life magical again.

*The ConductMom, apparently, had no idea how bad my vision is. She tried on my real glasses, not my readers, when she was here on Thanksgiving and nearly fell over backwards. “My poor baby!” she cried. I sympathized with her and pointed out that while learning of a child’s handicap can indeed be devastating, the fact that in this case the child is over 40, happily married, and successful in two jobs ought to be some consolation.

More thoughts on werewolves …

December 9th, 2010

Part of the reason werewolves don’t get a lot of love, I suspect, is that they’re harder to work with in film or television. It’s hard to go full lupine. As this rather interesting article from the Onion’s AV Club points out, dogs are not good actors, and wolves are even worse. So producers usually go for a sort of wolf-ape hybrid thing with makeup and prosthetics, which never looks very good.

More than that, though, I think that lycanthropy is, oddly, a little too mundane to catch on as the next occult craze. Werewolves are neither superior to humans, like vampires, nor inferior, like zombies. They are simply different. They have a condition. They have time-management issues. Werewolves are probably really into Spoon Theory.

Somehow, I was reminded of all this when a friend of mine Tweeted, “One great benefit of being deaf is being able to shut out the cellphone blabbermouth behind me. I just take off my processors.”

I replied, “There’s a thin line between disability and superpower, isn’t there?”

And that’s kind of the story with werewolves. It’s a superpower sometimes, and a disability at other times. Being a blonde with symmetrical and childlike features may get you out of a traffic ticket, but will probably make it harder to be taken seriously in your career. Having Asperger’s syndrome makes figuring people out harder, but fixing their computers easier. Parents have the awesome power to create life – and then become hostages to fate forever after.

Zombies are all the other drivers in a rush-hour gridlock. Zombies are the people who write comments in response to YouTube videos. Zombies are the people you see on television at those rallies, the ones you disagree with.

Vampires are your insurance company, raising your rates for an accident for which you weren’t at fault. Vampires are your late-night drunk-dialing ex. Vampires are hidden fees, the person behind you who darts into the newly opened checkout lane, that guy at the bar who refuses to believe that you really do want to drink a martini and read The Economist in peace.

Werewolves are afraid of embarrassing themselves in company. Werewolves wake up thinking, “I don’t believe I did that.” Werewolves can be great in emergencies, but daily life poses greater challenges to them. Werewolves wake up every day not knowing if they have a superpower, or a disability.

Werewolves are us.

The life, and the mind

November 12th, 2010

Usually I just Tweet articles that I think might be of interest to you, but this one was so fascinating to me I had to lift it up in a blog post. It’s the story of an academic whose son is severely physically and cognitively impaired. How can we make reason and learning the center of our lives, of our value systems, and still find value in the life of a person who cannot reflect, cannot reason, and never will? It’s a beautiful piece and I’d love to hear your thoughts on it.

Winterizing

November 10th, 2010

Here‘s a good, if slightly facile, article on how to protect yourself against winter depression.

I’m not looking forward to this winter. It’s not as though normally, I’m all “W00T! Boston winter, yeah! Bring it on and keep it up through April again this year!” But generally winter is a slight annoyance, a constraint, a nuisance. This year I’m afraid, to be honest. Because as the days get darker and shorter and colder, so are my thoughts and my temper and my spine. Because last winter was when I was really, really sick, and now I’ve got that irrational, but hardly abnormal, fear that as winter descends, I’ll get sick again.

Even if I don’t, I want to be extra careful and good to myself this winter. Right now I feel scared and anxious about the approach of the cold weather. So I made a list of a few things I’m going to do in order to keep myself on track:

1. Invent lots of new vegetable & whole-grain stews, and share my best recipes with my readers, and ask for yours as well.

2. Stretch and meditate to the Hebrew prayers I have on my iPod at least once a day.

3. Write at a coffee shop at least twice a week, even if it’s really cold. There are several within a seven-minute walk. I have a brand-new 800 fill count Patagonia winter coat. I can walk seven minutes to a coffee shop.

4. Study Torah and write more about Judaism. Ideally, for money. (Yes, I know that sounds like the most anti-Semitic joke ever, but I mean it. I want to do this for my own benefit, but I really do want to start getting my religious writings published. I think I have a distinctive voice, and it’s a way of participating in my religion that is very, very meaningful to me.)

5. Take up photography. I’ve done bits and pieces of arts and crafts, but the problem with it is, then you have arts and crafts all over your home, and what do you do with them? (Especially if your artistic style is dark and gothic. It’s great if you’re a knitter and can knit scarves and booties, but you can hardly give someone a mixed-media Cornell box based on 16th-century anatomical drawings and clipped-out phrases from Poe and de Tocqueville as a christening gift.) I can’t quite grapple with the logistical problems of creative efforts that can’t be archived on a computer. Fortunately, photos can be.

6. Make physical pleasure a priority. Well, yes, Mr. Improbable gave a big cheer when I told him that resolution, but I’m not only talking about that. I mean burning incense. Taking time at night to rub lotion into my legs and feet. Getting a massage when I want one. Curling up on the sofa with a book and blasting the space heater right at myself until I feel like a human hot toddy. Taking a sauna after working out. Making time to sit and really gaze into my art books — or, for that matter, at some of the art I’ve bought or made myself. Taking hot baths with essential oils. Going to Colonial Drug and smelling the perfumes. I’m good at giving my brain pleasure — through work, books, conversation, television, blogging. I’m less good at giving my body pleasure. (I’m hardly the only one, I suspect, in our culture that is simultaneously Puritanically afraid of the body and hypersexual. I almost blushed writing the phrase “giving my body pleasure” — it seems dirty, crude to say. But I believe my body is as holy as my mind. I believe pleasure and beauty are religious values, not sins. I believe God wants me to be happy as well as good. Maybe if I act on those beliefs, I will truly feel them as well as believe them.)

7. Ramp down December, ramp up January and February. Because we all know December’s not the hard one. The first snow is fun. And there’s Christmas and New Year’s and Hanukkah and such to keep you occupied. It’s January and February, when the snow is old and dirty and half the Christmas lights have burned out on your neighbor’s house but he still won’t take them down and your social calendar looks as blank as Don Draper when faced with another person’s emotional need, that life gets hard. So start planning now for some treats for yourself in January. A girls’ or boys’ night out, a potluck, a costume party, trapeze lessons — whatever does it for you, and brings a little jolt of novelty into your life. Don’t burn your body and mind and wallet out during December and leave yourself depleted in January. Boston winters are a marathon, not a sprint!

(I originally typed that as “spring.” Paging Dr. Freud!)

So that’s my list. Probably a little heavy, because I’m dealing with stuff that not everyone else is. Of course, I’m also not dealing with winter stuff that other folks have to: fine, maybe you’re not worried about your digestive system collapsing, but I don’t have to worry about a commute or what to do on my kid’s snow days. Point is, winter’s hard. And this time I’m gearing up for it. Are you? What are you doing?

Good advice?

April 13th, 2010

Like most advice columnists, I get far more questions than I can use, and the only ones that get answered are the ones that are published in my column. (I wish more people understood that about the nature of advice-column writing, but that’s a topic for another day.) I think perhaps once or twice I’ve written a person back directly, not for publication. One of these happened last week, and it’s fairly obvious why the following question would have caught my eye:

My partner started a new job, and colleagues have been inviting us to dinner parties to welcome us. This would be great except that I have a digestive disorder and have strong reactions to dairy, red meat, fried food, shellfish, chocolate, and alcohol. It feels like a big imposition to give hosts this long list, especially when we barely know them and they are already being so kind. I don’t want them to feel obligated to serve some dreary menu lacking all these yummy things, or feel they need to cook extra things for me.

I need to make a good impression, not be a pain in the neck. But I can’t eat those foods; if there’s alcohol in something, I get sick pretty rapidly.

Is there a graceful way to inform hosts about my health issues but not make them feel they must go to extra trouble? Or is it better to say nothing, show up, and just eat the carrots? Or should I just stay home? Thank you!

The LW signed the letter with the initials “IBS.”

I wrote back:

I almost never e-mail directly to questions, but I’ve got a lot of food-related q’s coming up in the column, so this one won’t make it in.

I also have the digestive trifecta: IBS, gastritis, and GERD. You and I could have a good time together drinking our herbal tea (with no mint!) and playing “Forbidden Foods Bingo,” so I’m really feeling where you’re coming from.

Here’s what I’d do. I think you should go. We’re not living in the “Mad Men” era where the proper corporate wife was an essential part of her husband’s career, but still, it’s good to get to know the folks your partner will be working with. Bail on a couple of dinners, if you need to, but do try to make most of them.

For the ones you’re going to attend, call the hosts. Tell them something like, “I’m so looking forward to meeting you. Unfortunately, I am dealing with some digestive issues at the moment, and I’m on a ridiculously restricted diet. Can I bring a side dish? It would make things easier for me, and I don’t want you to have to change your menu.” Then you make your side dish, bring it (along with some non-alcoholic wine or sparkling cider), and eat that and whatever else you can have. If they protest, laugh and say, “No, believe me, I can’t eat X and Y and Z and A and B–you’re not the Canyon Ranch Spa, I don’t expect to be catered to! Besides, my partner loves all those things, and it’s not like s/he gets them at home!”

If the colleagues become close friends, you’ll work it out together over time. And I don’t know why telling people you have digestive issues “at the moment” makes them more comfortable (and less likely to tell you about the magical cure that worked for their sister-in-law) than admitting to a chronic condition, but it does.

Good luck!

“IBS” wrote back, thanked me for my advice, and said things had been going well so far.

I’m still questioning myself about that “at the moment” thing, though. I’ve been saying this a lot about myself, but that’s because I’m still working out exactly how much margin for error I have in my diet. IBS clearly knows, and doesn’t have much margin at all.

So was I going against my own principles of body acceptance, and acknowledging our “sicks,” by suggesting that IBS elide the actual nature of her condition? (It’s not a lie, per se: she is dealing with IBS “at the moment,” after all.)

Yet I find people are more comfortable, and also much less likely to pry/sympathize excessively/suggest cures, when you frame your condition as temporary. So if “I have a chronic illness and I’m not ashamed of it” is something that a person is militant about, there’s going to be the psychic cost involved of constantly dealing with the clueless. (Obviously, whether you frame an illness as short- or long-term depends on how visible it is. You can’t see that IBS and I have diseases. People like the woman with trichotillomania don’t have the luxury of this debate.)

There’s also something known as the “primacy effect” that comes into play here. People tend to place greater weight on the first pieces of information they receive. If you lead with your illness, which IBS would have to do if she’s calling people she never met to ask about their menus — that’s going to be the main thing people remember about you. By downplaying the illness and, er, up-playing her willingness to bring a side dish and enthusiasm to meet her husband’s colleagues, IBS can shift her initial impression from “the sick lady” to “the friendly lady and creative cook.”

What do you think? Was my advice good, or too namby-pamby?

Yesterday’s column

April 5th, 2010

… is generating some very interesting discussion in the comments section. The mother of a boy with trichotillomania wrote in to ask if my answer would have been the same for a man. Obviously, my general principle — that caring for your health overrides the ritual aspects of etiquette — would be, but the tactics might be very different. The conversation also goes into some of the godawful comments that people with disabilities or unusual appearances are subjected to by strangers. As commenter Ridley put it, “[H]oly hell people just don’t know how to talk to the disabled. My limbs don’t work great, but my feelings and vanity are still functional. I wish people would just remember we’re still people and mind their manners.”

I’d recommend checking it out — and I’d love to hear your ideas.

… and yet another letter

March 9th, 2010

So many interesting responses to the links, and about last names! Anyway, as I’d mentioned earlier, there were also some letters in the last issue in response to my column with the grandmother who was upset over her granddaughter’s amputation. Most were positive and all were very thoughtful. I also received a letter from a friend of mine who has a family member who lost an arm in an accident. This is the same friend who has such a wicked, prankish sense of humor that I didn’t believe her when she told me Tori Spelling would be the guest host on the “Today Show.”

She certainly wasn’t pranking me in this letter, but as you can see, her sense of humor is a family trait:

One year ago, my 18-year old niece lost the majority of her right arm following a car accident. My niece (and her whole family) couldn’t possibly have a better attitude about it, given that moping won’t make the thing grow back. Some folks in their little Iowa town were somewhat taken aback about their sense of humor, but screw them — it’s not their problem! If having a laugh about it and not dwelling on “the sadness” helps them through, then have at it!

For example:

(1) Four days after the amputation, my niece came home from the hospital in the shirt she insisted that my brother bring for her: an “It’s only a flesh wound” Black Knight shirt.

(2) She sent Valentine’s e-cards to everyone (one month after injury!) with a picture of her waving her pink-wrapped stump and the sentiment: “I nub you!”

(3) Here is a list of “Stump Stories” that she and her family came up with, to make the story more interesting than just a car accident:

* College costs an arm and a leg these days, but some grants pay for half.
* An airline lost it
* Iowa Corn Shark
* You know when that guy says “Keep your hands and arms inside the ride at all times.”…
* Magicians assistant for a really bad magician
* I was a carny
* I just can’t have nice things
* Coyote ugly incident
* Police should have shackled both my arms
* My new (car, tv, etc) cost an arm and a leg but I got half off.
* A type of mating ritual
* Train hopping when I was a hobo
* Zombies
* Bad paper cut
* My arm? Oh, ARGGGHHHH!!(acting surprised)
* That mosh pit at Fall Out Boy was scary!
* Maybe a horse bit it off.(from BtVS)
* A new weight loss program. “Ask me how I lost 10lbs. FAST!”
* Mexican Standoff
* Well I’m definitely never gonna say, “I would give anything for a hamburger right now!” again…
* Taking candy from a baby is harder than it sounds

So this is the kind of girl who can lose an arm in January of her senior year, graduate on time and start college in the fall as expected, have lots of friends and not crawl into herself. I think the important factor here is that before the accident, she already had an incredible sense of self — she truly didn’t care what others thought about her, but not in a surly teen way. Instead, she just liked herself and her friends, and if you didn’t like her, that was OK. I’ve yet to meet a teen girl who is as well adjusted as she was and is, and I’m getting teary-eyed thinking about how proud I am of her.

What an inspirational — and hilarious — letter. I was laughing and crying as I read it. I’m certainly not saying that there is only one way to respond to a life-changing event such as this, or that it’s the job of people with disabilities to make others comfortable around them. (Although that is a very intriguing topic, and one I’d like to go into sometime.) But I simply had to share this with all of you.

New Year’s resolutions

January 15th, 2010

Now that we’re halfway into the month, let’s talk New Year’s resolutions! I asked you all about yours a while back, and never really followed up on that.

I’ve always found the NYE resolution to be an interesting beast. On the one hand, there is something that seems very natural about a season of excess followed by a period of restraint and sacrifice: it’s a pattern you see in too many cultures and religions to ignore. On the other hand, the way so many people do NYE resolutions seems set up to guarantee failure: black-and-white absolutes, with no room for the inevitable backsliding. By the second week in February, you’ve already missed your goal of getting to the gym four times a week, so you just quit entirely.

I was pondering what my own 2010 resolutions and goals should be, and then more or less got handed a new set by my doctors: quit drinking, and change my entire eating pattern. Which was a little more ambitious than anything I was planning to carve out for myself, I tell you what. Here’s what’s helped:

1. Not having a choice.
I’ve never been a fan of the classic AA notion that one must “hit bottom” (is that still a going concern in AA, or have they more or less dropped that idea?) before making a change. Still, there’s something to be said for having one’s doctor say “Yes, there is a real problem, and you can and must stop this problem now.” (Funny, on the other blog we are discussing why people write in to advice columns, and one thing that a number of folks mentioned, that hadn’t really occurred to me, was that the columnist not only provides a reality check, but also a sort of kick in the butt, just as my doctor did for me. Having someone say not only, “Yes, you’re right, there is a problem,” but say “And you need to do something about it now.”)

2. Quick feedback. I think this is something that scuttles a lot of NYE resolutions — people simply don’t see results fast enough, so they get discouraged and quit. I was lucky, because I felt markedly better after only a few days of getting on the right meds and knocking off the booze and spice. But let’s face it, a lot of good habits actually make you feel worse when you start. Sure, going to the gym will give you more energy and a better mood … after a few weeks. Before that, it will make you tired and cranky. So if the behavioral change itself won’t give you immediate, positive feedback, figure out a way to implement some little reward system, so you’ll know you’re getting somewhere.

3. Taking positive action. It’s always easier to do something than to not do something. (As you read the rest of this post, do not think of a white bear. See?) I’ve decided to look at my new diet as a chance to explore new cooking techniques and ingredients, rather than as simply giving up X, Y, and Z. WES alluded to a similar idea:

I think I have stumbled on an epiphany for my new year’s resolutions. In the past those pesky resolutions were things I knew I **should** do even if I didn’t want to do them. However this year I am making my goals shorter and more in tune with what I want to do. And if I finish them before the year is up great, I might do new ones in July!

So rather than my resolution to go on a diet my resolution is to crochet more and learn a new technique. It is a calming activity, allows me to be creative, and while still a sedentary activity it has the added bonus of you really cannot eat/munch while crocheting. And snacking is a big weakness of mine so really it should be a win win.

4. Communication and support. The research on the extent to which social networks affect behavior is impressive and grows more every day. We need our friends to support the kinds of things we do, the kind of person we want to be. It’s been immensely good for me to be able to write about my health issues here, and feel that by doing so, I’ve opened up a forum for other people to share their own experiences. It’s also been good to have a couple of weeks of minimal socializing, so I can get my new habits well under control before having to attend a cocktail party. And Mr. Improbable and I have had a number of conversations about how his life (since I do the cooking) will and won’t change.

Some further thoughts on your comments …

TJ wrote, “I’m not big on New Year’s resolutions (those always seem a little overwhelming), but I (along with my family) make resolutions with a more limited time frame.” I like that; I like that a lot. Make goals for a month or so, not for the entire year. I wonder if that isn’t what people do anyway, really … there’s the New Year’s Eve goals, and then spring cleaning and getting in shape for summer, and then back-to-school season.

Anne with an E wrote, “I resolve to stop waiting until the time is right/we have the dough to throw a huge shindig before inviting people over. Pizza and game night for six is just as fun as a BBQ for thirty (with a lot less cleanup.)” YES! I figured this out about four or five years ago and it was quite a revelation. And with six or eight people, everyone can really get to know each other. (Note for Bostonians — Redbones BBQ delivers, and they are very good. They also have enough good sides that any vegetarians will be taken care of. Highly recommended for informal parties.)

Military Mom wrote:

My first resolution is to stop agreeing to do or help with activities without REALLY stopping to assess if I have time or want to do it. Up until now I’ve volunteered when other people need help and have almost always regretted it afterwards. My second is to try to lower my stress level. This will require the rest of my family to step up and help, but I think they are recognizing my stress is affecting my health…and therefore their lives too…

Good luck with those two, obviously related, resolutions. I’m sure it’s something many, many of us can relate to.

How about the rest of you? How are your resolutions working out?

Food rules

January 4th, 2010

Christmas was quite delightful this year (the belatedness of the annual Mystery Milo notwithstanding). We had a good group of folks with us, and “Sherlock Holmes” certainly didn’t disappoint as far as holiday escapism, and the uncanny desirability of Robert Downey Jr., were concerned.

The only part that made me slightly unhappy was when we went to Changsho for dinner afterward. We got the big table with the lazy susan — does anything speak of joy and inclusiveness more than the big table with the lazy susan in a Chinese restaurant, I ask you — and sure enough, I was That Person who had to take her entree off the lazy susan and hoard it to herself, because I couldn’t share what anyone else had ordered.

I’m going to be That Person for a while, it seems. Essentially, there is more bad acid floating around in my gastrointestinal system than at a Grateful Dead tribute band concert, and I need to change a lot of eating habits fast. After a couple of months, when things calm down, I should be able to have the occasional quesadilla or slice of pizza.

But until then, I’m one of Those People, those people who can’t share. I can break bread with you, but that’s about it. Oh, and those fabulous Ugly Wintry Mix cocktails you all came up with? Yep. None of those, either. Which means I might now encounter Mr. or Ms. Pushytipples of my own, now that I’m not drinking much. (Or, more likely in my case, Mr. or Ms. Terribly-Concerned. I can have a drink occasionally — very occasionally — and while I appreciate being warned of things like unexpected rum in eggnog and habaneros in the queso dip, I also appreciate being treated like an adult. I am at the moment eternally grateful to one of the Fabulous Bureaucrats, whom I had dinner with two days after my diagnosis, and who unblinkingly sat through my dithering about whether or not ketchup was on my new list of forbidden foods, as well as my consumption of two glasses of white wine. The FB in question knows me well enough to know that I can’t change all my habits overnight, but change they will when I set my mind to it.)

Before all of this mishegoss went down, of course, I knew that food and identity were deeply linked, as were food and sociability: it’s pretty much what the food chapter of my book is about. But having to make a lot of changes, fast, brings certain issues into even sharper perspective.

For one thing, there was this brilliant you-know-you’re-middle-aged-when moment a few weeks ago, when I met a friend at Casablanca for a cocktail-hour business meeting. He immediately apologized and said he couldn’t eat, because he had a colonoscopy the next day; I, of course, couldn’t drink, as I have gastritis. (We ordered hot waters, he shared his broth with me, and we left a really good tip.) Not sharing food turns out to be as good a bonding experience as sharing it, though I doubt restaurateurs would agree.

It’s also been interesting to see how many of my friends with a strong ethnic identity have been quick to share recipes from their own cuisine with me. I’m not just appreciating their food; I need it. Their Greek, Bosnian, Filipino, Russian recipes will save me from my own sick body and restore me to health.

So in at least two cases, having restrictive food rules has brought me closer to people who either have similar — permanent or temporary — restrictions, or people whose ethnic identity is complemented and complimented by what I can eat. I’m sure I’ll run into others, as time goes on: people who disbelieve in my condition, or the way my doctors and I are treating it; people who will take it as a personal affront that I cannot eat or drink their particular favorite food; people who, one way or the other, make my biological condition into some kind of metaphor of rejection, perhaps rejection of something they hold dear.

Yesterday’s “Coupling” addressed that, from the perspective of a food consultant/chef who finds it impossible to form relationships with men who have food rules. She writes, “Gradually, I realized that a willingness to try new foods spoke to a person’s general openness to the world and new experiences.”

It may. Or it may speak to a person’s number of taste buds, or to their immune system or bowel functioning. Our bodily processes may be a metaphor for deeper psychological issues — or they may simply be the sometimes working, sometimes on-the-fritz results of a complicated and frankly klugey system. (No offense, but how anyone over the age of 25 can believe in Intelligent Design is beyond me. Wait ’til your knees start going and see how intelligently you think you were designed then, kid.)

Hand sanitizing — an informal look

November 23rd, 2009

Proper hygiene is on everyone’s minds this season. I invite you to check out a new report on hand sanitizing by business professor emeritus John Trinkhaus.

John won the 2003 Ig Nobel Literature Prize for “meticulously collecting data and publishing more than 80 detailed academic reports about things that annoyed him. (Such as: What percentage of young people wear baseball caps with the peak facing to the rear rather than to the front; what percentage of pedestrians wear sport shoes that are white rather than some other color; what percentage of swimmers swim laps in the shallow end of a pool rather than the deep end; what percentage of automobile drivers almost, but not completely, come to a stop at one particular stop-sign; what percentage of commuters carry attaché cases; what percentage of shoppers exceed the number of items permitted in a supermarket’s express checkout lane; and what percentage of students dislike the taste of Brussels sprouts.)”

I haz a sick

September 29th, 2009

I have a chronic illness that flares up from time to time. If you’re a personal friend*, you probably know what it is; if you aren’t, you don’t need to. It’s not life-threatening, or even painful, but it’s capable of knocking me down to about 30% of operating capacity for days at a time. There’s medicine that helps — sometimes — and things I can do to minimize the chances of a flareup — sometimes. The body is a complex system affected in many ways by many things, and there’s no easy if-X-then-Y with this one.

(The main reason I’m not saying what it is isn’t because I’m terribly private, or that it’s terribly disgusting, but because people feel compelled, when hearing of another’s illness, to either share their own stories of much worse suffering or else suggest this new medicine or diet or asana that worked wonders for their sister-in-law who had the exact same thing, really! Neither of these are lines of discourse that most sick people are at home to. Although it does motivate us to get our strength back, so we can pop you one.)

Part of my New Year’s resolutions last week was to get better. To heal myself. Not physically, because I can’t do that, but to reconcile my body and my mind and my responsibilities and my relationships so that I don’t make things any worse than they have to be. I recently finished Loretta Lynn’s second autobiography, Still Woman Enough, and one line jumped out for its pure simplicity and sense: “I do not believe in pain if there is any way around it.” A woman who has had as much pain in her life as Loretta Lynn damn well knows what she’s talking about, and damn well knows that pain does not ennoble. We’ll be talking about Ms. Lynn — and about Tina Turner, too — a bit later.

I wasn’t intending to spend my New Year’s energy on that project, but guess what, the Days of Awe this year turned into the Days of Aw Crap, It’s Back Again. If the days between Rosh Hashanah and Yom Kippur are like a dangerous ocean voyage, the good Lord decreed that I was going to spend most of my time in sickbay. So I figured, okay, that’s my challenge for this year. It wasn’t what I’d planned to focus on, but you can’t order up life lessons like they’re adult-ed seminars. God don’t run no JuCo.

Anyway, here are my resolutions:

1. Don’t use my illness as an excuse to get out of doing things that I really can do, and that would be good for me, but that I just don’t want to do. Sometimes I will bail out on things when I’m sick because I’m embarrassed to compromise. I don’t want to call a friend and say, “I can’t make our dinner date tonight because I don’t feel well, but I’d love to see you–could you come over for a quick after-work cup of tea instead?” It’s easier to pretend that “something came up” and I need to reschedule entirely. I feel weird going to the gym and only working out for 15 minutes. It’s easier not to go at all. But hey, my friends love and accept me, and I’m sure everyone at the gym is paying attention to their own workouts and not timing mine.

… but …

2. Don’t be all macho or martyrish and force myself to do things that I really can’t. I’m not doing anyone any favors by promising things I can’t deliver. Nor am I doing myself any favors by pushing my limits, either because I don’t want to believe that I have them, or because I want to punish myself for being so weak and stupid as to get sick in the first place.

3. Do what I can to keep it under control. Oh, all right — it’s a stomach thing, okay? And I will pop you one if you give me unsolicited advice. Anyway, the point is, there’s certain things I can eat or avoid eating that put me at lesser risk for having a flareup. Small, frequent, high-fiber/high-fat meals are good; coffee and raw vegetables and too much rich food are bad. Sometimes. Mostly. Like I said, it’s a complex system.

… but …

4. Don’t blame myself when I do get sick, even if I got sick during a time when I wasn’t eating “right.” I’m not ignoring the reality of the connection — although as mentioned it’s by no means a hard-and-fast causality — between my habits and my health, but I truly don’t have to paint it in moral terms. Getting sick doesn’t mean God is punishing me for having a latte. It means I took a small gamble and lost. And we take a gamble every day just by getting out of bed, let alone leaving the house.

… and finally …

5. When I’m sick, to realize that the inevitable feelings of low self-worth and hopelessness are part of the symptoms. I don’t have to fight the feelings, but I don’t have to believe in them, either. That’s a tricky line to walk, but I think I can do it. I did pretty well with that last week, and I’m proud of myself for it.

I’m posting this because maybe you haz a sick, too. A lot of people do. And a lot of us are ashamed of it. We are a problem-solving, can-do, bootstrapping nation with a medical tradition that doesn’t handle chronic and complicated illnesses terribly well. (I’m about the furthest thing from a New Ager when it comes to medicine — don’t give me a smudge stick and healing dances if I need penicillin, already. But that doesn’t mean I think Western medicine has it all figured out right now. If it did, we wouldn’t continue to do research.) And 21st-century American culture has raised body-shaming to something akin to a religious tradition.

So maybe if you haz a sick, you could stop beating yourself up over it. Do the right thing by yourself, as much as you can, and when you can’t, well, that’s life. You can’t always be perfect, and even if suffering is the price you pay for a fall, that doesn’t mean it’s the price you deserve to pay.

Love yourself. Forgive yourself. Heal yourself.

Comments open, and please don’t take my “Don’t give me advice!” screeches to mean that I don’t want to hear what’s worked for you in dealing with your own chronic or recurrent illnesses. I very much do. I mean, please don’t tell me what to eat, that’s all.

*I’ve always thought the term “personal friend” was redundant and stupid, and in most cases, it is. But sometimes it is the right phrase. I do feel I have a relationship with my regular readers and commenters, but you aren’t people I know in everyday life. Friends, but not “personal friends.”

The politics of deafness

August 16th, 2009

The Globe reports on the increased use of cochlear implants in children under three. Medical stories don’t tend to grab me, but identity, communication, and politics do, and there are serious ramifications to “fixing” deaf children at such an early age:

Before implants, deaf children learned American Sign Language or lip reading. Most fared well, although many could not speak. Like the De Laras, however, many families whose children receive implants today are dissuaded from learning sign language, a trend that will bear repercussions for the entire deaf community and that some specialists fear is a mistake.

Tyler’s generation, hearing specialists say, will redefine what it means to be deaf.

“I describe it as a revolution,’’ Schorr says. “It’s close to a miracle, what this technology has made possible.’’

I’m not so sure the Deaf community would define it as a “miracle,” although “revolution” they would certainly agree with. “Deaf” with a capital D is used not to define a physical condition, but a culture, a culture based to great extent around American Sign Language and the constraints and opportunities it affords. The “Deaf culture” view of deafness is contrasted with the “pathological” view of deafness, i.e., the view that being deaf is a disability and nothing more. (One can find both hearing and deaf individuals in both camps. For a good overview of Deaf culture, including some basic etiquette tips for hearing folks, go here. For a thoughtful argument for the pathological view, go here.) If cochlear implants are used at such an early age, the hearing parents of deaf children may, understandably, have little motivation to learn ASL or have it taught to their children. Without the next generation of signers, what will happen to Deaf culture?

I haven’t read the book yet, but I’ve met the writer, and if you are interested in cochlear implants–or science fiction!–check out Michael Chorost’s Rebuilt: How Becoming Part Computer Made Me More Human. Michael was hard of hearing from early childhood, received cochlear implants in his 30s when he went completely deaf, and is enough of a scientific and literary geek (in the best sense!) to have truly made the most of becoming a cyborg. (He is also an attractive man who bears some resemblance to Brent Spiner, the actor who played Data on “Star Trek: The Next Generation,” and we both agreed that it was a shame that Mr. Spiner would be too old to play him, should a film ever be made of Michael’s life. Who better to play a cyborg than the actor best known for playing an android?) His speech at Gallaudet University is a must-read.