Palindrome's Open Salon Blog

Pig Worms: The Cure, Finally?

Fri, 20 Nov 2009 16:11:55 -0500

YUCK!

I am trying to contain my joy right now.

No, I haven't won the lottery. Nor did I just a get a big fat advance for a book. It's more exciting than that. You know how they say that health is the real wealth? Well, that's what I'm talking about here now. I'm about to put it to the test.

As I written about here on OS, my husband has been suffering from severe Crohn's Disease—one of a spate of autoimmune diseases that have plagued the late 20th century—for nearly nine years now. It has been an extremely rocky road, dealing with a disease that has much of the gravity of cancer, without any of the public sympathy for it or awareness about it.

I hate to put it like this—I know it's not a competition—but it's true. There have been times that have been so low that I actually had envy of cancer, which for me is just the other "c" word. I think cancer has more of a support system intact. There are centers devoted to it. People get the seriousness of it. There is a dialogue that surrounds it. I'm not sure people understand the devastation of severe chronic illnesses and autoimmune diseases, which can be life-wrecking, and deadly.

My husband and I have gone all over the place in terms of treatments for Crohn's: some have worked—sadly only temporarily, some have not, some have bankrupted us. The last time I wrote about this subject in detail was the day after I wept in front of the televised Obama address on healthcare reform. I couldn't contain myself then either, mostly because my husband and I had recently been scorched by the nefarious U.S. healthcare system in trying to treat this insidious disease. He's been all but paralyzed by it emotionally.

I don't think I need to spell out what that's done to our family. You can imagine it for yourself, and really, I've gotten to the point in which I can't even really talk about it anymore without sounding like Michael Moore, or worse.

My husband has been under the care of specialists for years, with mostly unremarkable results. I've written to them asking if they can suggest other treamtents or drugs. I pretty much get no response. His doctor, I can only imagine, is just as frustrated as I am. Or is he?

Perhaps more importantly: where is he? Why did I have to do all of this research myself? I think I already know the answer to this question, so for now, I'll skip over it...

At some point, I found out about a cutting-edge therapy that has been written about in the New York Times and the Boston Globe and many other publications. I recently found a book that addressed the subject on a broader scale, Riddled With Life: Friendly Worms, Ladybug Sex, and the Parasites that Make Us Who We Are, written by evolutionary biologist Marlen Zuk. This may have been what finally pushed me to dig deeper.

After all, no one, not even the specialist, was offering us this information.

Zuk writes accessibly about the hygiene hypothesis. The theory goes that in our efforts to be extremely "clean," we have wiped out all the bacteria that actually might be helpful to us. Scientists, claiming that many diseases arise from an environment that is TOO clean, argue that in our anti-bacterial everything culture, normal stimulation of the immune system during infancy and early childhood is missing, impairing its ability to repsond normally to pathogens.

Zuk writes, "day-to-day exposure to bacteria, viruses, and other microorganisms actually helps the immune system" and our cultural obssession with cleanliness might be responsible for partially destroying our ability to ward off certain diseases. "This is not to say," Zuk writes, "that being sick is good for you, but it is starting to seem that rarely being sick can be bad for you." Eating a little dirt, it turns out, is not so bad after all.

So what does this have to do with pig worms? A team of immunologists in the U.S. and in Europe have discovered that exposure to certain whipworms, an experience that mostly occurs in developing countries, can help ward off certain diseases. Since the mid-twentieth century people in areas where, say, malaria is rampant have had far fewer autoimmune disorders than we do in the U.S. and in Europe.

Crohn's, as I have explained in other posts, is one of those autoimmune disorders. It first reared its ugly head in the U.S. among Jewish immigrants in the 1930s . Since then its occurance has gone from one in 50,000 to one in 250.

Crohn's, apparently, is rare in most parts of Africa, Asia, and South America. People, including pig farmers, who are chronically exposed to Trichuris suis, the pig whipworm, tolerate it with no apparent side effects.

So I've been on a search to get me some, and my joy stems from finally finding it.

After much exhaustive research and some back and forthing with doctors and immunologists, I found out more about exactly how my husband can go about exposing himself to the parasites that people who suffer from autoimmune diseases are missing. (It is probably safe to conclude that we are all missing them, but their absence may not be doing all of us this kind of harm.)

Many scientists now believe that the absence could be responsible for allergies, hayfever, and asthma—but that is another post in the making. For now, I can live with my daily runny nose. My husband cannot live with Crohn's, at least not to this extreme, not in the way it has ravaged his body.

So, what it boils down to is this: helminthic therapy, a treatment which the FDA has not yet approved. Essentially it entails swallowing doses of the egg form of the whipworm and waiting for them to whip the immune system back into shape. In some parts of the world, people absorb the parasites through their bare feet, but not so here in our concrete, well-heeled existence far from the farms.

Read more here about worm therapy, if you are so inclined.

Sound disgusting? Yes, it is. But we are now one step closer to the reality of it. I tracked down the specialist in the U.S. who put me in touch with the company in Germany and now, for the first time in my life, I am about to order pig worms in the mail.

Imagine our glee when they finally show up in the mail.

I'll let you know how it goes. I know miracles are few and far between. But, I have read of a 90% success rate with worm therapy as it pertains to Crohn's. Still, I've gotten my hopes up before, and I'm guess I am now making a comitment to raising them again. We're willing to hope a little here.

What have we got to loose? For now, I am about as happy as a pig in you know what.

Oink. Oink. Snort Snort.

To Barbie or Not to Barbie Is Not Really the Question

Tue, 13 Oct 2009 13:10:04 -0400

Warning: this post contains images that some parents may find disturbing, namely, a picture of Barbie’s waistline.

The Gabriella doll came first. It was an innocent gesture from an old friend of mine who now works for the Princess Headquarters conglomerate otherwise known as Disney. Leaving work one day, on his way to meet me for dinner and a 20 year catch-up and knowing that I had a young daughter, he filled a bag with Disney film franchise goodies which included DVD copies of The Little Mermaid and Sleeping Beauty, as well as the aforementioned Gabriella doll, which looks a little bit like a young, hip Latina version of the once-popular Midge doll.

Midge was Barbie’s brown-haired predecessor, and, to my mind, the one with much better fashion sense, playing respectable to Barbie’s hoochie mama look that has been both trumped up and down over the last five decades. But Barbie didn't start off as skanky. Originially she looked like a gal who could have been in Antonioni film or at least someone I might want to have coffee with.

My five-year-old was thrilled to receive the Gabriella doll, which came with a red one-piece bathing suit and some tiny red and white shorts modeled from the outfit the real Gabriella wore at her summer job as a lifeguard.

In case you don’t know who Gabriella is, and you should feel blessed and possibly even superior to me for this ignorance, she is the female protagonist in the High School Musical trifecta, a series of Disney movies that, in my efforts to begin schooling my daughter in the wonderful whimsical and edifying world of musicals, I “exposed her to.” (I assuaged my guilt by repeating the phrase both to myself and to other moms who hadn’t seen it yet, “It’s Harmless,” which is basically true.) Gabriella (Vanessa Hudgens) is a young Latina high school genius who falls in love with Troy Bolton (Zac Ephron), the school’s handsome young, white, not-so-dumb basketball star who may have also been responsible for the recent trend of boys with shags and long bangs that nearly cover their eyes.

Troy and Gabriella sing songs together, dance together, and eventually, although not until High School Musical II, kiss. The grand conclusion of the triad (though I believe more is on its way) is that Gabriella, despite being in love with this Troy Bolton character, goes off to an early admission to Stanford, leaving behind her foxy basketball star and musical co-star, who ultimately decides to attend UC Berkeley in an effort to be closer to her. It’s a moment any skeptical parent could be proud of. For me it was the first time that my daughter and I talked about universities in California.

“What is Stanford mom?,” she asked as the movie was concluding. It wasn’t a conversation I thought I’d be having with my then 4.5-year-old.

But I wanted her to know that Stanford wasn’t some evil halfway house that stole girls away from their first boyfriends. A good mom would have surely said, “Stanford! Why that’s the college you’re going to go to someday!” But, in light of our recent finances, it would have been smarter for me to say, “Better start working towards that scholarship now so that you, too, can go there, or any college for that matter, some day.” I said neither. I did tell her that it was a big school not far from us, and that we could go visit someday and see if we think it is worthy of Gabriella’s brilliance and charm.

Then came Sleeping Beauty. She was a birthday gift from a classmate. I’m sure my daughter must have blurted out the name on the playground, giving her classmate a helpful bit of information when it comes to shopping for a birthday present for someone you barely know. Sleeping Beauty doll is a bit taller and more exaggerated than the Gabriella doll. She is decidedly white and blue-eyed and tan with heinously dyed blonde hair that looks more like tacky costume jewelry than something that actually grows on your head. She’s Barbie on steroids and she’s got those awful Barbie feet, too. The standing-on-her-toes ones that make it impossible to wear comfortable shoes, god forbid she ever step foot in a gym or go for a run, or go do relief work in Sudan or something. It’s impossible! Not with feet that are only made for stilettos.

Our Gabriella, on the other hand, wears cute little ballet flats and preppy sneakers. She’s in high school, after all. I’m pretty sure Sleeping Beauty, whose real name is Aurora, never went to school. She was too busy, as the story goes, with her peasant life (which doesn’t explain the feet at all or the fact that I had to explain to my daughter what a “peasant girl” was, and that this was supposed had to be my example!?)

I should tell you that Barbie has been a source of conversation in my family of origin. My mother, a pretty traditional woman, is rather proud of using me as an example of a former Barbie owner who “turned out all right.” It’s true. I had a bunch of them as a kid in the 70s. I had several, and a Skipper, and a Ken, and a GI Joe doll. I used to stage a kind of Melrose Place with them, giving them weddings and divorces and having them talk behind each other’s backs and argue and make up.

Actually, I’ll just come clean about all of it. When I was a kid, I had a three-story Barbie penthouse, with a pool and a car. My Barbie lived large, had a lot of bling in her life, lots of friends, and a couple of guys to chose from. Although, I don’t know if my mom knew how this played out in my room.

A dozen years later, after I joined the Women’s Studies department at UC Berkeley, I do remember having more than a couple of Barbie discussions. My mom seems to remember me saying that I would never let my own daughter play with a Barbie. I don’t think I was quite that pedantic, but Women’s Studies classes can make you say things that, in retrospect, sound rather—pardon the expression—cocky.

There comes a time in every feminist's life when she or he has to face this Barbie issue. At the very least I had hoped to not go through the whole Disney princess thing with a daughter, but I have come to realize that as humans we are attracted to what we are attracted to, and that much of it is based on archetypes that we can explain without too much judgment and anger at our culture—which I still have plenty of. When she gets a little bit older we can start busting through the assigned gender roles and stereotypes and, of course, the sexing up of young girls that we all bristle at. With an opinionated loud-mouth for a mother, my daughter isn’t going to have much of problem distinguishing between the passive and active roles that women play in our culture, still the definitions of beauty conversation isn't going to be an easy one. I am confident that she’ll get it without me having to pull out the documentaries or make her read Simone de Beauvoir in middle school, but peer pressure is another can of worms.

So, as a mom, I’ve wondered quite a bit about this Barbie thing. I suppose I let them enter my house even if I didn’t purchase them. And, I think at some point they will be useful in having a conversation about gender roles and women’s bodies, etc. I wasn’t ever personally angry about the role that Barbie played in my life anyway. Despite having been born and raised with blond hair, I never wanted to be her, or to look like her. If anything, I think that falling asleep each night to my little FM radio and listening to all the "love songs" of the 70s did more damage to my life expectations and feelings about gender roles than Barbie ever could.

Still, Barbie has had a tough life, and I feel for her. From the get go in 1963, she was told she was too sexy, too mature for young girls. I mean, come on, is that her fault? Midge and her counterpart Skipper, which I also owned, were apparently created to appease the Barbie critics. Midge, originally marketed as Barbie’s best friend, had a fuller face that was supposed to be “less sexually intimidating.” And, she had freckles. Eventually Midge came in pregnant version, was sold with a husband, and later in an African American version and was picked up by Wal-Mart. But, as we all know, Barbie is not alone. There are hundreds of both slutty and the more buttoned-up variations of Barbie, Gabriella dolls among them.

Barbie has been the source of so much parody. She's been accused of being a meth maker and dealer, which could help explain her unusually low weight, and an anorexic. Can't a girl be skinny anymore without being a drug dealer or having an eating disorder? (Oh, and don't forget the Karen Carpenter story retold in a film acted out with Barbie dolls. I haven't.)

To make everyone else feel better, Barbie’s gone through a great deal of reconstruction, too. After spending a long time looking demurely to the side, her eyes look forward now. Since 1997, her waist has been widened, her boobs softened and reduced. She doesn’t come equipped anymore with a scale that reads 110 pounds, as she did in 1965. With the advent of high fructose corn syrup and hydrogenated oils, how could she? That would be so unrealistic.

Mattel has tried to make her body look more teenage and less grown-up.

She keeps current, has her finger on the pulse, and, well, at least she doesn’t say unrealistic things, as she did in her 1992 version that generated many phrases such as “Math class is tough!” Today’s Barbie is a math whiz, a candidate for a Nobel Prize in Economics, or like Gabriella, a genius who corrects her own high-school math teacher’s formulas. She’s just a girl on her way to Stanford who is not going to let Troy stand in her way of future success or future earning power.

As for the Sleeping Beauty doll my daughter received, that’s another story. She has that glassy-eyed soul-less look, like she might just spend her life in front of the mirror, or worse, asleep, and waiting for her prince to come and kiss and revive her. She wears nothing practical, or even fashionable. Pink, always pink. She's all glitz with nothing interesting to say.

But, despite all of this, I knew things couldn’t be all that bad when I came into my daughter’s room the other night and listened to her playing with both of the dolls.

This was what I overhead:

Gabriella: Hey Sleeping Beauty, you better get up. Stop sleeping all the time!

Sleeping Beauty: (silent, asleep)

Gabriella: Come on Sleeping Beauty you have to get out of bed. You’ve gotta get up and go to Stanford!

Then Gabriella leans over and kisses her and Sleeping Beauty wakes up.

P.S. Since Barbie turned 50 this year, I've been wondering about the possibility of a Menopause Barbie. Wouldn't a Barbie that has hot flashes and mood swings be kind of cool to own?

Kiss My Gay Ass and Other Californisms

Fri, 9 Oct 2009 16:10:21 -0400

Recently a friend of mine, a former Californian who moved to New Mexico to teach at university that dissolved within one year of her new run as a tenure-track professor, was telling me about how much she misses living in the Golden State, although more specifically in the Bay Area, where we both used to live. When I asked if she had any plans to return she said she doubted it. "California is in such bad shape," she blurted with a confidence that felt like it was bordering on betrayal.

In all fairness, I guess she's right, and I still choose to live here, despite having a freaky Republican governor, who has recently been the subject of impeachment talks, who I can barely handle listening to when his voice comes on the radio, as it did this morning. But, California has it merits, and I do feel at home here among many like-minded folk (minus the ones who voted for Proposition 8).

So this morning when I heard the news about Arnold Schwarzenegger doing a drop-in at a Democratic Party fundraiser and making comments that generated a rather hostile reception, I wasn't the least bit, well, bothered by it. Apparently State Assemblyman Tom Ammiano of San Francisco, angered by the Governor's "trivializing of important issues" called out inappropriately to him, first jokingly with the same "You lie!" jab that President Obama received last month.

Then he took it one step further by yelling, "Kiss my gay ass!"

I have to admit, after hearing this news, my first thought was, how bad can California be? At the very least, you gotta love it for hosting precious and gratifying moments such as these!

When asked to comment, the Assemblyman insisted that Schwarzenegger's idea to make a surprise appearance to a group of people who are so entirely frustated with him was a bad move on the governor's part. "It was a cheap publicity stunt and I think this guy has a problem distinguishing between movies and reality," Ammiano said. "You don't come uninvited and you don't devalue what the Democratic Party stands for."

In a later response to the incident, Schwarzenegger seemed surprisingly unmiffed. "Compared to the reaction I got in Hyannis Port when I told the Kennedys I was marrying Maria, it was fantastic."

Executive Functioning, What's That?

Wed, 30 Sep 2009 00:09:22 -0400

The Sunday Times magazine ran a piece about early childhood development and the importance of executive functioning, that is, the ability to predict what factors will help a child to "succeed." I read it with interest, trying to strike the usual balanced dose of skepticism and deference to the people who have spent many years observing children in a more scientific way than I have.

(I am likely too busy reacting to everything I encounter that concerns my daughter to really have an objective view. And isn't that our job as parents, to be triggered by everything, every injustice, every experience that we'd like to think is about their well-being, but is really about us and our less than ideal childhoods? Wait, no. I didn't mean to say that. OK, well, maybe I did.)

In the case of executive functioning, something I am quite sure I runshort on, it turns out that play is the most important factor, the kind of play that leads kids to problem solve and figure things out on their own without the interference of adults. (It can also lead to something called self-control, but I have to admit, I don't know what that is. My plan is to Google it as soon as I finish writing this.) This is great news to me. It came at the perfect time, when I didn't need another thing to feel bad about in my life as the parent of an extremely playful child who sometimes raises eyebrows.

One of the things I like to tell myself, as the parent of a five-year-old “spirited child” is that one day my high-energy daughter is going to be the most amazing woman. This is not to say that I don’t appreciate her now. She’s smart, funny, insightful, intuitive—and, did I mention, high-energy? Oh right, I already said that. But it’s not something you could ever overlook. It’s not something that any other parent I spend time with overlooks either.

My daughter, who likes to break into song and dance in the middle of a crowded room, finishing up with a kind of Mary Tyler Moore, throw your hat off at the end routine—yes, there is usually a hat involved in case you were wondering—is a bonafide performer, a real outgoing child.

When it comes to other parents and non-parents (does that cover everyone?), I usually get the full range of reactions: surprise, concern, sympathy, horror, or, often, just undisguised disbelief that my child could exude so much energy. Couldn't I just demand that she stop moving around and be quiet? She’s not officially (pathologically) hyper-active, or ADD, or ADHD or anything like that. I haven’t joined a support group. Well, I did once take a class about raising “spirited children” which turned out to be kind of a support group. It helped. A lot, actually. If only to know that I wasn’t alone in having the child who never stopped moving, or as one woman in the class remarked about her own daughter, “who is twirling around on her head up until she falls asleep at night.”

Spirited children don't have trouble focusing. They can focus quite well. But they can be higly emotional, highly sensitive, highly perceptive, and profoundly difficult to manage.

The experience is a challenge, and one which I don’t take lightly. I can’t. It affects every day of my life, every day as drop her off at school, hope for the best, and trod off to my job, second cup of coffee in hand, and try to regain some of the school busloads of energy I expend parenting a non-stopper. I’m not trying to play the victim here, but I have noticed, through many painful incidents that I won’t entertain right now, that parents of the say, the more demure children, the ones who are likely to sit still, are quick to think less favorable thoughts about her. And then of course there’s that other idea—that it is my lack of effective parenting skills that has produced this "unruly" child.

Believe me, pretty much every mother already thinks that most things are her fault anyway, so you don’t even have to insinuate this idea. It’s already there just waiting to be picked from the parenting tree of knowledge.

What I found most helpful about the spirited child class was having an instructor who made one thing very clear: don't expect empathy from parents of kids who are less demanding, less intense, less emotional and sensitive. In her words, "they just don’t get it. " They will always think it is something YOU are doing wrong as a parent—not reigning them in enough, not disciplining them enough, perhaps even not giving them a good whack (and yes, I did once have a man come up to me at Target, my child mid-tantrum, and tell me that I needed to “set her straight”).

Your job, this teacher said, is to not care about what other people think.

This is great advice. And, in my opinion, fit both for parents and non-parents. It's great advice, but difficult to follow. As a parent, you are forever on the receiving end of scrutiny, well-intentioned people telling you how it is, diagnosing your child with the latest findings. (Because I read too much, I probably already know about them before you tell me.)

“She’s one of those indigo children,” a woman once said to me with a great deal of authority after briefly meeting my daughter. “They’re very smart, and they’re born with a sense of entitlement.” Great, I thought. Is that her way of telling me she’s going to be a pain in the ass? I thought a sense of entitlement was more of an American trait than a new generation of children. So I did a little research about this Indigo thing. Turns out I was wrong. “Indigo Children” are the new crop of kids who appear, on the surface, to be high-intensity kids. And, if you keep reading the fine print, they also tend to be diagnosed with ADD and ADHD.

“There is an epidemic of bratty kids in this country,” another all-too-confident parent acquaintance said to me recently. It wasn’t the first time I’d heard this kind of statement. You hear the criticism all the time: Parents are too soft, too tolerant, too afraid of coming down hard on their children, too lenient, less willing to squelch their budding flower's personality.

I can’t say whether or not I agree with this brat epedemic. Before I became a parent I remember using the words " little narcissist" and "self-indlugent" to describe kids i'd encourntered. I may have even blamed their parents for appearing to be teaching them that the world revovled around them. I can now look back on that and see that I was just not a parent yet. I was guilty of not having a clue about the ride of anxiety that parenting has become and I have since been relieved of that cluelessness.

It’s true that my generation has reacted to the more totalitarian parenting style. We do more of a modified democracy. Perhaps the anarchists in the bunch give all of us a bad name. I haven't personally met any of them and my hunch has alwasys been that there is a revisionist tendency when it comes to the "good old days" when kids were "better behaved." Fear of being slapped across the face can produce a quieter child, but is that something we should strive for?

I can really only speak from my experience. And though I try my best not step into the landmine that is the discussion of parenting style differences, what I do know is that I am not one of those anything-goes parents. I don’t let my daughter off the hook. I am not of the "my child can do no wrong" school of thought. But I won’t hit her and I won’t spend a lot of time wishing she was an easier, quieter, or less animated child. The bottom line, if there is one, is that a one-size-fits-all approach to parenting doesn't work for anyone.

What worked for you may not work for me. My child is not your child. And as jealous as I tend to be watching your quiet and seemingly obedient little bundle of joy, I have quite a different little person with a very different temperment on my already full hands. She may end up a lobbyist, or a litigator, or having a long run dancing on Broadway. She may end up struggling with all the energy she produces until she finds a productive way in which to channel it. I see it as my personal responsibility to help her do this. After all, as her parents, we’re the ones who passed on the genes. We’re the sensitive creative types who gave birth to another sensitive intuitive type. At the very least we owe it to her to give her some guidance.

Oh right, I was going to look up self-control. To be continued.

My Healthcare Problem is My Deficit Problem

Thu, 10 Sep 2009 14:09:30 -0400

“Put Simply: Our Healthcare Problem is Our Deficit Problem” —Barack Obama, September 9, 2009

There I was again, watching him, and crying in front of the TV. Not like I was when Obama was sworn in, not out of feelings of pride that we finally have someone in the White House who seems to be able to really see things clearly. The tears started with the most benign of the evening’s statements: Our healthcare problem is our deficit problem. I was emotional because that (overly) simple statement sums up my life right now.

Call me naïve, but first let me tell you a horrible little story about this “Healthcare Issue” and what I sometimes call the "$1435 Incident."

Sometimes I want to tell it like a joke. It might go something like this: A very sick man walks into a pharmacy and waits in line to pick up a shiny new medication that his doctor has prescribed. As the cashier rings him up, the numbers $1,435 appear in green digits across the screen, which the cashier believes to be a mistake, so he voids the transaction and rings the purchase up again. When the same numbers appear, he pulls the man to the side, away from the line of people waiting behind him and says, "And that’s only for two weeks worth of this stuff," to which the sick man replies, " ."

That’s just it. There is no punchline. I get to that part and I realize this could never be a joke. It firmly holds its place in the nightmare category. And it’s been happening to us for the last nine years. In fact, at the risk of sounding hyperbolic, it’s nearly wrecked our lives. The sad thing is my self-employed husband was, and still is, insured. Only his insurance provider deemed this new prescription, his only real choice at the time, as a thing they would not cover. And even though we both had full-time jobs, there was no way that we could afford to cover these costs.

I fantasized about moving to Canada or to Europe. I fantasized about Michael Moore escorting us to the insurance company’s office to give them a piece of our mind, but I knew that wasn’t going to happen. I fantasized about a miracle cure, a miracle drug. But one had already arrived, and had come and gone before our very eyes. My husband took it for several years, and then one day his body developed a resistance to it. Just like that, our years of relative ease and wishful thinking were suddenly over. His immune system, without any notice, had begun attacking itself again.

Anyway, the $1,435 incident wasn’t even the disturbing part, it was the all the things that came before and after that. The $1,435 incident was just like a very big ludicrous comma punctuating a rather large and messy sentence that I will now condense for the sake of clarity: Around the age of 30, my husband was diagnosed with Crohn’s Disease, a chronic illness that has caused nearly everything that we once knew as our lives, and our relationship, and sometimes even our sanity, to crumble.

I know we are not alone on this one. It was as if our life had become a pre-existing condition.

Very soon after we’d gotten married, we were offered a name to this disease. If you look closely, you can see it in our wedding pictures. My husband’s face is eerily thin and lacking in color. Because he’d been dealing with a more mild version of the symptoms for some time, he spent the first few post-diagnosis years in denial, seeking out opinions from every naturopathic doctor he could find. Then he lost more weight, and things took a turn for the worse. So we found a specialist, who put him on Prenidsone, an evil steroid that produces horrible mood swings and general irritability, and a miracle medication that his insurance actually covered (because, we learned later, he had to go into an infusion center to have it administered).

When that eventually failed and it came time to switch medications, the insurance company backed out, saying that they wouldn’t cover something that he injected himself at home. After trying for several months to eat the costs, after having to quit his job because he was so sick he couldn’t work a full day, after realizing that we were sunk financially, we made the decision to leave our house and the expensive city we lived in. After all, we had a two year old and we needed to start thinking about how this was affecting her.

My husband got on a patient assistance program, which helped until that medication wasn’t working anymore. Now he’s on another trial drug, which seems to be working, and his insurance covers it because, you gotta love this part, a nurse comes to the house to administer it to him. For now, things are OK. But I’ve learned over and over again that this too might be temporary.

In Buddhism they talk a lot about the impermanence of our lives and about groundlessness. In my family, our lives have been groundless for many years now, and to some extent, I have gotten used to this sensation. It helps me to remember that even when I think things are stable, they might not be. I know that sounds crazy, but it’s the only thing I have to go on because I watched everything that I had counted on change quickly and dramatically.

I watched a disease tear our family into pieces of our former selves. I watched it destroy a savings account, and rip away the hope from my husband’s eyes. I watched our own deficit grow until we were just a few steps away from bankruptcy. I watched as our family and friends couldn't figure out how to respond to this situation, all of us caught up in a whirlwind of denial, pity, resentment, rage and sometimes, out of exhaustion, even indifference.

So last night, as I watched Obama address this issue, as I listened to my daughter screaming in the other room because she couldn’t watch The Aristocats for the 13^th time, a daughter who still really doesn’t understand that her father has a chronic illness that has affected every fiber of our being, every decision we’ve made in the last five years that she's been alive, and after I pleaded with my husband to watch this joint session address with me, though he is too close to the issue to really be able to tolerate a speech (replete with booing Republicans) about it, I sat in silence. I sat, and I cried, and then I let myself feel a micro-dot of hope, no matter how naïve that may seem.

I had to. I just had to. What else can I do? Healthcare reform can’t really help our family at this point, but it could help prevent this from happening to someone else.