Category Archives: Life Lessons

Morality and Medical Issues, Part 2

Tuesday’s post challenged the notion, debunked by gobs of science, that illness and disability somehow are the results of moral failing. After I posted, I went running–it’s my primary treatment for fibromyalgia and for guarding against a host of other ailments–but I couldn’t escape a nagging feeling about the post.

A few blocks into the run it hit me: I feel guilty about being sick.

Again.

Still.

Damn.

I really do believe the God of my understanding isn’t doling out diseases and disabilities as punishment. I absolutely can’t get behind a god who zaps a beautiful baby/child/youth/adult/mother/father/sister/brother/friend/foe with ___ (insert name of a disease or a disability) because he or she or his or her kin didn’t read the bible enough/didn’t attend church enough/wasn’t pure enough/wasn’t repentant enough/ committed some litany of sins. I’d like to think God has better things to do than play whack-a-sinner, although whack-an-a*hole has a certain dark appeal, at least in the abstract.

The problems with the illness and disability as moral failings theory are legion. First, there’s the scientific evidence, which I discussed in yesterday’s post.

Next, I don’t know about you, but I can’t keep track of what’s considered a sin and by whom. I think the biggies are pretty universal, like murder, and yet, there’s war and the death penalty so there’s even grey area with this one. That’s the problem with concepts like sin and morality: there are all these grey areas, all these rationalizations, justifications, conditions. Murder’s wrong, except when it’s state-sanctioned, some say. Others say murder’s wrong unless it’s in self-defense and then others say even that’s wrong.

Some folks think it’s a sin to eat meat on Fridays while others say the sin is eating meat at all. Some say alcohol is sinful while others insist on imbibing it as part of the sacrament of communion. Some folks think premarital kissing is sinful while others say kissing is fine but anything more could land you in spiritual hot water if you aren’t married.

Marriage. Now that’s a subject that can land you in a pickle, but the kind of pickle differs according to which piper’s playing the pickled pepper tune. Sinfulness lurks in every matrimonial corner, begging a host of questions. How many times can you marry or remarry and who can you marry and who can marry you? What has to happen during the ceremony to ensure you won’t end up on the no-spiritual gifts list? What about your intentions regarding offspring, especially if childbearing might not be in your–or the child’s–best interest? The questions go on and on and the answers are as plentiful and as diverse and as controversial as the questions themselves. One man’s happily every after could be another woman’s death everlasting.

Plus, when it comes to linking illness with immorality, what’s the degree of sin required to yield disability? Are the wages of sin paid on a sliding scale? Is every person with cancer a super sinner while those with recurring infections frequent delinquents? Can you do enough to atone for your sins and thus be cured or are some things etched in permanent marker?

It’s all so grey and plaid and cross-hatched and full of one side versus another. It gives me a headache . . . and a heartache. And it makes me disbelieve the folks who say people who are chronically ill are spiritually unfit.

And yet, here I find myself wondering if even a little bit of my health is linked to a less-than sinless past, and if so, which one of my sins is responsible for the celiac disease and which sin’s fruit is fibro? They have to have different sources, I’m thinking, given the diseases activated twenty-plus years apart. Or, maybe they really are because my grandfather ran rum for the Mafia during Prohibition in Jersey City or because he and his father beat up a priest. (They had good reason: the priest locked my grandfather’s little brother in the basement of the church for several hours as punishment for not knowing his Catechism. When my great-grandfather confronted the priest and demanded the little boy, who had missed dinner by this time, be freed, the priest refused so my grandfather and his father knocked sense into the cleric. The little boy finally was freed but my grandfather had to quit school before he finished the 4th grade. Who’s the sinner here?)

The current uproar about repealing and replacing the Affordable Care Act is taking a toll on me in ways I hadn’t recognized until now. It’s personal. Those elected officials and pundits bloviating about who really needs health care and what’s wrong with those of us who can’t seem to get it together enough to stay healthy are talking about me. I’m one of those people for whom the Affordable Care Act was a real game changer. It enabled me to get medical treatment I otherwise couldn’t afford. I still had to pay thousands of dollars out of pocket for said care, but thousands are more manageable than tens of thousands. When they talk about “those people,” judging “them” for their moral failings and laziness, they’re talking about me.

I’m not perfect. I have made mistakes, some pretty major ones, but I don’t think I’m so sinful I deserve to suffer for the rest of my life, and I don’t believe you deserve to suffer, either. We don’t deserve to be sneered at by suits who think they’re better than us because they clutch more cash in their claws and can spit specious soundbites deep into the shadows cast by a gold-plated dome.

I am doing my best to do as much good as I can with the gifts and talents God has given me–illnesses and disabilities included. I know you are, too. When it hurts too much or I’m too sick to work, which happens, when I’m splat out like a dark-furred cat on a hot July day, it’s not because I’m lazy or I’ve been struck by the devil. It’s because I’m sick and I hurt too much. My gut is twisted not because I’m immoral, but because I’ve been glutened–again–and my intestines are being attacked and damaged in an uncivil war scientists still don’t completely understand.

If morality and health are to be connected at all, let’s remember that we are each other’s keepers, and that whatsoever we do to the least of us, we do to ourselves and we do to the one who created us. Instead of questioning the morality of those of us who are sick, question the morality of turning your back on us. We are you.

 

Illness Is Not A Moral Failing

Screaming loudly from more than a corner of the quest to repeal and replace the Affordable Care Act is this notion that moral, upstanding people take care of themselves and do not get sick; therefore, they do not need guaranteed health insurance or subsidized premiums to make insurance affordable. This line of thinking suggests we who have chronic illness somehow bring the malaise upon ourselves. We don’t lead clean, healthy lives; instead, we make bad choices which lead to our illnesses. If we put our money on organic food instead of smartphones, I’ve heard said, we’d be healthier. If we pulled ourselves up by our bootstraps and worked to become wealthy like regular Americans, rather than laying around bemoaning our ailments, we’d stop being a drain on the economy . . . and we wouldn’t need to see the doctor so often.

The trouble is, science doesn’t support this kind of thinking. Having a chronic autoimmune disease like celiac disease as I do, or Sjogren’s as my sister does, or ankylosing spondylitis as my other sister does, is more a fuction of genetics plus environmental risk factors than of moralilty. Continue reading Illness Is Not A Moral Failing

Gut Instinct: In Search of an Answer

My gut has been roiling for the past two months and not because of national politics. I got worried about the persistent pain and the degree to which my abdomen appeared to be swollen, so I made an appointment with a new gastroenterologist.

If you have gut issues, you probably understand how stressful it can be to go to the doctor. An MD is no guarantee the person you trust with your health is kind or even competent. As my mother used to say, there’s a top 1/3 and a bottom 1/3 in every medical school’s graduating class, as well as the top 1/3 and bottom 1/3 of medical schools themselves.

The gastroenterologist who diagnosed me with celiac disease in 2009 did so by mail. A week after the endoscopy I received a form in the mail with the following words scribbled on it: Evidence of celiac disease. Restart gluten free diet.

That’s it?

Continue reading Gut Instinct: In Search of an Answer

Complicit in Oppression: What I, a White Person, Must Do to Stop It

I have not written for this blog in the past year because I was busy being a newlywed. That silence ends today with a post that doesn’t talk about gluten. It talks about something even more sickening.

This post sprouted from a conversation I followed on Facebook. The conversation was started by a beautiful woman I had the privilege of learning from when she was a student at the university that employed me (and also is our alma mater). I still learn from her, ten years later, as she challenges white people me to understand and confront our own racism and its crippling, killing effect on her and all people of color.

She said she doesn’t trust white people. A large number of her friends admitted their distrust, too, a distrust we white people have earned with our mercurial support for civil rights and equal rights. We show up when it suits us, and when we show up, we twist the whole thing to suit us. We want “credit” for supporting Black Lives Matter with our signs and bumper stickers but where were we in the demonstrations and marches against racist police brutality? We marched en masse for women but our pussy hats all were pink (didja think about the colors of women of color down there?)

Continue reading Complicit in Oppression: What I, a White Person, Must Do to Stop It

Accessorize Snow Wise

There are so many pretty ways to realize your theme for a wedding without causing yourself to cringe when you later look at the photos. I’d be cringing right now if I’d gone all out, say, with a wedding gown or even bridesmaids’ gowns embroidered with snowflakes. I did investigate options for about a day before deciding classic with a sprinkling of snowflakes was the much better way to go. Looking now at the pix, I am glad I did.

I can thank my my dearly departed mother, who had strong and wise opinions about how far to take a theme. I remember her planning a Halloween-themed birthday party for my sister one year when we were kids. She went all out on the decor but drew the line on serving guts in blood (spaghetti and sausage in tomato sauce). It’s all fun and games, she said, until a kid runs home crying about being forced to eat a bowl of guts and a piece of bone meal cake. Who wants to answer that call, my mother asked, especially if the little party-goer ended up barfing on the new sofa once she got home?

I never forgot that bit of advice and it’s served me well.

Continue reading Accessorize Snow Wise

Gut Reaction to Fashion: Choosing a Painless Gown

Twenty-one days after my reproductive organs were yanked through my birth canal, I  accidentally went wedding dress shopping.

I don’t recommend this.

I don’t recommend any kind of shopping three weeks post surgery, unless you traverse said shopping emporium by way of velvet-lined, pillow-packed coach and are accompanied by people who fetch what you want and bring it to you. Bonus points if they pay for it, too.

I especially don’t recommend jamming yourself into couture created by camouflaging cinching corsets with swaths of satin and silk that some commission-currying consultant will clamp so snugly to your corpus you can’t cough, all to show you how to look like a million skinny bucks. Continue reading Gut Reaction to Fashion: Choosing a Painless Gown

Planning a Gluten Free Wedding on a Budget

Apologies for the dearth of posts the last two months. I wasn’t sick or in jail, thank goodness. I was super busy planning a wedding. My wedding. Yes, I planned and pulled off an entire wedding—from appetizers, bridesmaids, and cake to tuxedos, underthings, a veil and white gown…and everything in between—for 100 guests in four months.

It wasn’t that hard. I mean, what else is there to do while recovering from surgical removal of one’s womanly innards and resulting complications thereof?

Sure, I could have wallowed in self-pity: woe is me (or, more correctly, I) for being in pain for five months and counting (I have gotten a bit peevish about the pain on a few occasions). How awful to be in menopause when I’m not even fifty (I got over this pretty quickly). Rue that I’ll never have children of my own (this does prickle me with sorrow from time to time and then I think of all the kids I’ve helped as a teacher or adviser in the past twenty years plus being an aunt is pretty danged awesome). Wallowing is boring and surprisingly exhausting. I prefer to look on the bright side of things.

There were and are a lot of bright sides to the surgery. Number one, I don’t have cancer. We can end the gratitude list right there. What else do I need to feel immensely grateful? The surgery and cancer scare reminded me that life is unpredictable and short. There are no guarantees that I’ll have next year or any years after that, or even next week. Life can change in an instant. The doctor could have found cancer and I could be dying or dead right now.

Given that uncertainty, as well as the good news that, at least for now, I’m not dying, why not go for it and get married to the most wonderful man in the world? And why not do it sooner than later? Continue reading Planning a Gluten Free Wedding on a Budget

What? Sparkling Cider Is Not Gluten Free

The holidays call for festive beverages to toast the season. Merry Christmas! Happy Hanukkah! Happy New Year! Weddings also call for festive beverages to toast the happy couple, the father of the bride, the DJ, and whoever else makes the party rock.

When alcohol isn’t an option, sparkling cider fits the festive bill. In our family, we break out the Knudsen sparking cherry and sparkling pear cider. It looks so lovely in my parents’ etched wine glasses. For an extra splash of special, I put a frozen cherry in the bottom of each glass. My niece and nephews have grown up tipping glasses of Knudsen Family’s sparkling cider at every holiday dinner. They look forward to it.

A few weeks ago, I noticed a large display of new Knudsen specialty flavors at Sprouts: caramel apple, green apple, cranberry, and glogg. I got really excited, especially about the glogg, which we tried for the first time last year when Crate and Barrel offered a pricey non-alcoholic, gluten free, non-sparkly version. We waited until Crate and Barrel slashed the price in half and then we guzzled eight bottles. It tasted best when served warm. Why not try this new sparkly version, which had a much more palatable price tag of $2.99 per bottle? Continue reading What? Sparkling Cider Is Not Gluten Free

Drink This

Contrast tastes terrible. Flavor it berry, banana, vanilla, even Thanksgiving Dinner, and it tastes like, well, nothing like berry or banana or vanilla or anything remotely like food. It tastes so terrible, it makes one hate berry, banana and vanilla, whichcontrast is not fair because berry, banana, and vanilla are quite tasty as ice cream or pudding and don’t deserve such bilious wrath. It’s liquid chalk, aptly named contrast because it contrasts starkly with anything you want to put in your mouth and swallow.

Okay, the gallon of saline laxative you have to drink in preparation for a colonoscopy is worse, so I’m grateful that this is only a pint of berry chalk. Continue reading Drink This

22 Years a Survivor

The slanting of five o’clock sun through the branches of trees with turning gold and red leaves pings the bowl of my soul with hollow sadness. I love autumn with its crunchy ground and vibrant sound, the textured weaves of color wound in scarves around craning necks and sweaters pulled down from shoulder to waist so as not to waste any warmth on shorter days and indigo nights.

That same kind of light poured down the afternoon I spent stuffing envelopes with invitations to the Lupus Foundation’s annual fundraiser. On such a mundane Sunday the riot of light lightened my step, filled my heart with cautious joy. Here I was, just four months post grad school graduation, volunteering for the good of good people with a very bad disease. Come on sun, rain down your light! Let the crisp air in cloudless sky blow my heart that much wider. That’s what I thought, fairly skipping into the building. Continue reading 22 Years a Survivor