Tag Archives: autoimmune disease

It’s July! Let’s Have Some Links

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Debbie says:

In 1998 when Camryn Manheim was up for an Emmy, which she won. Designers lined up to make her dress, like they do (or did?) for Emmy nominees. Manheim, ever the fat activist, refused to take an offer from any designer who didn’t otherwise make plus-size clothes.

leslie-jones-768Leslie Jones, star of the upcoming Ghostbusters remake, complained on Twitter and found a designer, Christian Siriano, to make a gown for her. At least some of the fashion press thinks this is Jones’ fault. Kara Brown reports from Jezebel:

Pret-a-Reporter talked to Hollywood stylists who perfectly exemplified the stereotypes of the thin-obsessed, catty, narcissistic fashion industry.

 In addition to arguing that designers who have complete control over what sizes they make and still only produce the smallest sizes available do not have a size bias, stylist Jeanne Yang suggests that it would be a financial burden to create a new dress for a woman starring in what will likely be one of the biggest movies of the summer and who will soon be snapped thousands of times on the red carpet. …
It sucks that Jones had to complain on Twitter to get a nice dress to wear and that Christian Siriano was the only designer to step up, but hopefully he will do her right and she’ll show up on the carpet looking like a queen and making those fools wish they weren’t such brats.

All I can say is “Still? After all these years?”

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In the class of “how was this ever not true?” towards the end of June New York City passed a law providing tampons and pads to all women in public schools, shelters, and correctional facilities.  As Mattie Kahn said at Elle:

New York City is leading the crusade to free women from shelling out for a public health imperative. No one is forcing high schoolers to pay for toilet paper, dudes! 

“Tampon taxes” are going away, but seriously: how did anyone ever think that supplying menstrual products was not a necessary thing?

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Medium went to Samantha Bee’s Full Frontal to show us a biting overview of how female firsts are covered, from Amelia Earhart to Hillary Clinton. Hint:  the woman’s accomplishments are often not given any credit. Here’s just one of my favorites:

December, 1903, OSLO, Norway — “Ignoring voice vote, rigged Nobel Prize committee hands award to Marie Curie.”

Bee also cites reports about Billie Jean King, Sally Ride, and … Joan of Arc! Sadly not surprising, but well worth the two-minute read.

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I really liked B.A. Beasley’s essay at The Toast on genderqueer parenting:

You see, there’s no such thing as a parent. We only have mothers and fathers.

Here’s what I don’t mean: I don’t mean that women and men are hardwired to parent differently. I don’t even mean that the social construction of gender is so overpowering that overcoming motherhood or fatherhood is difficult for individual parents. I mean the social category of parent just doesn’t seem to exist.

I say this despite the fact that my social world is filled with people who are deeply invested in egalitarian parenthood. I personally know inspirations in the realm of splitting reproductive labor. They are not doing it wrong.

But all the good people in the world making all the right decisions about sharing, pitching in, and helping each other out can’t fix the fact that every form you complete, every book you read, every law you face, every policy you confront has two categories: mothers and fathers.

There’s a lot more: very thoughtful and some of it very personal. If the topic interests you, read the whole thing.

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Discussing a different aspect of families, social circles, and social expectations, Amalthea Aelwyn at Queen of the Chaos Circle wrote a long, detailed advice column for the families and friends of people with autoimmune diseases. Her piece has over twenty bullet points of things to think about and do: here’s just one that struck me.

  • She will already be her own worst critic. In her head, she will most likely be struggling to avoid chewing herself out regularly.   Nothing you can say will possibly be as harsh as she is on herself.  So she needs you to be especially careful of the things you say to her, and how you say them.  It’s okay to have your own feelings, and to express feelings, but you always have a choice in how you say something. There is a big difference between grumpily demanding “why do I have to stop eating wheat (candy or whatever else), just because you’re sick all the time!?” and saying “I wish there was a way to make you better, so we wouldn’t both have to skip candy and soda.” The first statement becomes an attack on a person who can’t help that she has this problem. The second statement is a way to express your frustration in a way that shows you care about her, and know that she misses those things too. It is even okay to be mad at her disease, but it’s not okay to take that mad out on her. Tell her that you are mad at her disease, too, if you want. But don’t yell at her for it. She can’t help it.

I have both family and several friends with autoimmune diseases. I found this a hard read, the kind I sometimes push against saying either, “That’s not fair to me!” or “But I already do that!” in my head, which usually means it’s things I need to hear. I’ll come back to it again and again when I need it.

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Finally, Casey Chan at Sploid features an adults-only video by SuperDeluxe that takes those of us who want to go there (not for everyone) through a sex-doll factory:

Being inside a sex doll factory and watching all that plastic nakedness get shaped is much more haunting than it is titillating. It gets unsettling, like if you were trapped inside a scene from a horror movie and couldn’t get out. But it’s also somewhat intriguing, just to see the mixture of products and body parts that they put together in a puzzle to shape a doll.

The queer parenting link is from zulu. Otherwise, links are from my regular reading, which includes Feministe, Shakesville, Sociological Images, Feministing, io9, and TakePart, along with other sources.

Saving Herself – a Review of Are You My Guru? How Medicine, Meditation & Madonna Saved My Life by Wendy Shanker

Lynne Murray says:

Using humor to write about illness is rare because of the high degree of difficulty and in Are You My Guru? How Medicine, Meditation & Madonna Saved My Life, Wendy Shanker nails it.

I’ve never met Wendy Shanker face to face, but her writing makes me feel I know her. Her first book, The Fat Girl’s Guide to Life, addresses the topic of “how to live happily in your fat body,” taking the form of a ridealong with Wendy through the winding wilderness roads of futile dieting, arriving at an understanding that her body and life could be good at a larger size. Wendy is a fun traveling companion even on a rough road. It turned out that the road would get much rougher for her.

What the world in general did not knew when The Fat Girl’s Guide to Life came out was that Wendy had begun to suffer from severe health problems, struggling with a rare autoimmune disease. Now she writes about that experience in Are You My Guru?. Here’s her “trailer” for the book:

In our goal-driven culture, some people see the idea of accepting our bodies as they are in the moment as a form of giving up all hope of improvement. In Are You My Guru?, Wendy uses her admiration of Madonna’s music, attitude and physical and spiritual self-reinvention as a touchstone. She says:

Every body tells a story. Here’s my quickie interpretation of Madonna’s: The longer she’s been around, the more shit she has to take, the tougher her skin gets. Her body has become a missile-defense shield against criticism. At the same time, she’s a weapon. She looks like she could crush your head between her thighs while she’s prancing around singing “Holiday.” You don’t mess with Madonna. To me, she’s an example of unrelenting strength.

I also have a sick body. Not fabulous like Madonna’s; I mean literally sick. In 1999, I was diagnosed with a rare, vascular autoimmune disease called Wegener’s granulomatosis. At the end of 2003, it flared like Russell Crowe in a hotel lobby.
(Are You My Guru,, p. 1-2)

Conjuring up humor about sickness can get much trickier when the disease happens to be one for which medical science is still fumbling around looking for effective treatments. When the subject is possible death and permanent bodily damage there’s a fine line between painful things that can be laughed at and events that no one can or should laugh at. Wendy is far from the first to tackle this challenge. Betty MacDonald pulled off the amazing feat of writing a funny book about a year in a tuberculosis sanitarium in 1937-38 before the 1940s discovery of antibiotics. I laughed out loud reading The Plague and I, but that book is rarely spoken of compared to MacDonald’s more famous The Egg and I, her story of being a city girl who marries a chicken farmer. An long excerpt from The Plague and I, with side comments about the book and the author, can be found at Ragged Edge Online

In The Plague and I, MacDonald, divorced and using her maiden name of Bard, skewers the medical establishment of the 1930’s, which valiantly attacked and blamed the patients while struggling with limited success to treat their disease:

One morning the Charge Nurse said, “The night nurse reports that you do not sleep well, Mrs. Bard. Is something troubling you?” I said no, not any one thing. She said, “What kind of thoughts do you have before going to sleep?” I said with mistaken honesty, “I long for my children and I think about death.” She said with horror, “Death! Why Mrs. Bard, how awful!” Then quickly recovering and jerking herself down so that not a speck of revealing human being showed, she said, “We do not allow patients of The Pines to think about death, or other unpleasant things. You must have pleasant cheerful thoughts.” I said, “But I can’t have cheerful thoughts when I’m by myself. I hate to be alone.” She said, “It is better for you to be alone. You must have cheerful thoughts or I will report you to the Medical Director.”

For me, reading Betty MacDonald’s books in 1960 offered a window into a kind of pre-feminist rebelliousness, whether applied to the grubby realities of life as a chicken farmer’s wife or the tedium of a tuberculosis cure that—in the absence of magic bullets—amounted to isolation, resting, eating well and hoping that the body’s natural defenses would defeat the disease.

Wendy Shanker’s situation, with an immune system gone haywire and attacking her body, put her in a quandary only slightly better than that of a pre-antibiotics tuberculosis patient. Medical science has some treatments to slow down, if not stop, the damage from autoimmune disease. Yet none of these treatments qualifies as a “magic bullet” and each medication has its own side effects, as Wendy began to realize:

In my expert opinion—and I had the sneaking suspicion that I, indeed, was an expert on my own body—the meds weren’t fighting Wegener’s; they were fighting symptoms and side effects. It was time to stop treating symptoms and start treating the root cause of the disease, whatever it may be. (Are You My Guru, p. 259)

In the absence of definitive strategies, many sufferers turn, as Wendy did, to the medically unfashionable pursuit of strengthening and balancing the body through alternative medical or spiritual practices. She got encouragement from many sources, including the knowledge that spiritual exploration has played an important part in the life of her idol, Madonna. Alternative medical and spiritual strategies by definition are not scientifically provable, and Wendy encountered some hostility from some of her doctors who framed it as a competition.

In the spirit of full disclosure, I should say that the idea of using spiritual methods to work on physical problems seems very commonsensical to me as a practicing Buddhist of 40-odd years (okay, some of those years were very odd). The Buddhist view is that body and mind/spirit are two aspects of the same entity. There’s even a term for it: body and spirit are funi—“two but not-two,” like the two sides of a coin.

There’s an element of suspense in Wendy’s journey and I won’t spoil the ending for you. As she goes from an “Oh, my god!” moment of diagnosis to a succession of, “Omigod, omigod, omigod” medical emergencies, alternative healing treatments seem like a slender reed to help pull her out of such a quagmire. But when all the combined forces of current medical wisdom can offer no “cure,” what’s a girl to do?

Are you my Guru? gives her answer to that question. The book goes beyond telling her story of learning to live and cope with an illness that won’t go away. She provides a Resources section at the end, but what I found most empowering about the book was her aim to encourage readers: “I wrote this book to save you time and angst whether you have an autoimmune disease or love someone who does.” (Guru, p. 281) I love her advice to become the expert on your own body and what works for you. Go Wendy!