Something you have to live with: breast implants

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Stark Reality
Artist Jane Birrell MacKenzie, Link

 

The other night, as I wrestled with the demons of insomnia, I happened to wander into the jungles of the medical internet. I was looking for answers, and I kept stumbling over questions. I was looking for clarity, and I kept finding myself deeper and deeper in fog.

My latest struggle was a case of hives, aka urticaria. Cause unknown.

So I started wondering.

And I found that even the saline implants that were stuck in my chest after my breast reconstruction were unsafe.

Somehow, in signing various release forms at the time of my breast surgeries, I didn’t register the fact that there are serious concerns about saline implants. Until now, eight years later. I have three graduate degrees, and I am a native English speaker. I come from a medical family, and am immersed in medical frameworks.

According to Mentor whose products are in my body, up to 27% of saline implants were removed inside 3 years, “mostly due to infections, pain, or leaking.” A physician at New York’s Hospital for Special Surgery described Mentor’s failure rates as “alarmingly high” adding: “it’s amazing to me it seems to be tolerated as just something you have to live with.”

“It’s amazing to me it seems to be tolerated as just something you have to live with.” That should be a tagline for cancer and cancer treatments.

I got to wondering when it was that I’d been properly made aware of all the risks. My husband describes me as an “elephant” – not because of my size, but because of my memory. I cannot recall any moment thinking: “Well, these implants are an option, and they’re a pretty risky one, so maybe I should consider not getting them.” Last time I contacted the Oklahoma hospital for my 2009-2010 medical records, it seemed like they had disappeared or were incredibly hard to locate. As for the Stillwater, OK cancer center, where I got pumped with chemotherapy, it closed down soon after my treatments. So where are those records?

Before my surgery, a woman from the local breast cancer support group visited me. I really didn’t want to talk to anyone. I was angry with anyone who thought they had anything in common with me just because we had this disease. That woman had opted to forego reconstructive work. I felt judgy about that choice. I found the breastless body unpleasant.

Fast forward to the present day. I’m contemplating the breastless body for myself.

“Many women will tell you that their doctors told them their implants were perfectly safe and nobody told them about the failure rate or that implants could break,” said Diana Zuckerman (Executive Director of the Washington-based National Center for Policy Research for Women and Families). “Everybody knows that there is a huge gap between what a written document says and what the doctor tells a patient,” says Zuckerman. “If the doctor says, ‘Don’t worry, my patients are all very happy,’ few women will get up and leave.” (WebMD)

So the other day, I brought up the issue of implants-related health impact with my doctor. She was in no mood to entertain my questions. The first time I’d met her was before my cancer diagnosis, and I’d felt like we clicked. I’d felt like we liked each other. Now, she’s seen me depressed and overwhelmed. I feel like now she avoids eye contact, and rushes me through the appointment before she might possibly lose her temper with me.

As it is, most of my doctors have no time to do anything but deal with a single-dimensional singular issue, and then hurry off to the next patient. Cancer, cancer treatments, and the effects of cancer are not single-dimensional. I can tell that she simply doesn’t have the patience for any such issues.

I still stick with allopathic medicine. Like the deluded proletariat, perpetually in a state of want, I trust my overlords. I will not turn to radical notions of holistic medicine, to quacks, bringers of strange messages, – Look! All you have to do is eat a pomegranate everyday; cancer and cognitive issues will all dissipate! The doctors, they assure me, are lying through their teeth. All the double-blinded peer-reviewed medical studies are falsehoods. I only need to pay $60 a vial for Dr. Sham’s Essence of Health, and then patiently wait, while changing my lifestyle, diet, and emotional life – and all will be well. When I search the internet for answers I actually avoid websites that use terms like holistic and herbal and natural. 

My doctor has no time to be a Sherlock Holmes and figure out my complicated medical history. There was one who tried; she really did. And she found nothing. Except a year later, there was cancer. I wonder if I can switch from a big Chicago research hospital that specializes in cancer to a small practice where a physician might have the time to deal with my many problems. But then, I recall the smaller clinic whence we have to this date been unable to retrieve even my daughter’s vaccinations records, let alone my cancer records. A hospital allows me to go from specialist to specialist, and records are in one place, at least.

Such choices.

In the middle of the night, it seemed simple. As I lay there, struggling to sleep, struggling to power think against the allergic reaction, I thought, of course, if there’s any possibility that the implants are guilty of even some of these effects, why wouldn’t I get rid of them. In the light of day, it’s not so simple. “What if I got rid of my implants?” I asked my daughter. She cringed, and said, no! It would mean I was, perhaps a different person. “There have been so many changes,” she says. How would regular people respond to me? Even in my chaste daily life, in my professional exchanges, I find male colleagues are not as nice to me as they used to be, when I was a real, feminine body. Not that there’s anything sexual in our social exchange, but somehow.

I remembered those months after September 2009. The surgeon removed my cancerous right breast, and refused to do the bilateral surgery until later. I spent a few months with one breast, like a Cyclops, feeling like a freak, my fake breast stuck in a bra, hating my body and what it was doing. My right side wasn’t just an absence – it was concave, not flat. Was I still a woman? Well, what if I became that person, except entirely concave up top? Would this be entirely disgusting to all who perceived me? At this time, people can “forget” I have fake reconstructed breasts. They seem – most of the time – to keep up the act. They’re cold in the winter because they don’t conduct heat like usual (are they dead?)

People don’t have the energy to keep up with this stuff. Hell, I don’t have the energy to keep up with this stuff. Most people want to know one thing: “So, are you cancer-free now? Great!!” And then we can change the subject and they can tell me what they need me to do or to be. With most people, I really don’t want to unpack this stuff anyway. It feels gross, like opening up a wound in front of someone. No one wants to actually know your wounds. People want to mail you sympathy. Everyone has their own wounds; everyone is knee-deep in grief and confusion. Everyone. I get it. In the larger context, I’m alive. I’m not in the hospital. I’m probably okay.

I’m okay.

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Commentary: The White House Summit on Women

This post is a series of reflections on the White House Summit on the State of Women, or #USOW. The aim is to critically reflect on many such celebrity-centric high-profile events that claim to be issue-centric, but really end up being more about groupthink and partisan-politics-centric. In the process, such events harm the issue by using up crowd energies but really achieving nothing at all except a series of selfies with celebrities. So agendas are damaged by being contaminated by personal agendas and partisan political agendas, as well as the taint of liberal feminist “happy talk.” I am writing this post because I believe that feminist politics are serious business that affect the everyday lives and deaths of vulnerable populations, and feminist politics do not deserve to be co-opted and deployed for partisan politics showcases. I appreciate that as a participant, my own career would be better served by rave reviews (I went there and it was awesome). But no, thanks.

Last week, at the White House summit on women in Washington DC, celebrities rather StateOfWomen-1200x613descriptionthan issues were the glue that kept the program together. The event calendar was completely packed, as if by committee. The schedule kept going over. They held on to Michelle Obama till the end, otherwise some of us were ready to give up and leave. I’m mad that my phone was dead from too many selfies and tweets, and by the time Michelle arrived, I couldn’t get a ridiculous me-with-FLOTUS-on-big-screen selfie.

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Inspiring but insipid slogans that point to real change. A program that deploys them for a feelgood party and fritters away the energies to preserve the status quo.

By 7pm, my companions and I were utterly exhausted with just listening to speakers. At a couple of points in the day, we were sent back & forth to “solution seminars”. The one I attended sure didn’t feature any solutions worth mentioning. For instance, the session I optimistically chose – “Revolutionizing Gender Norms” – featured Amy Poehler and Valerie Biden. The panel also included a representative from Mattel (with a beguiling foreign accent, so she sounded very smaht) who described how influential Barbie (Bah-bee) was for young girls, and how much thought Mattel is putting into this influence. I waited for the punchline: she concluded her presentation with showing how Mattel is working to change things – a commercial that showed young girls leading and ordering adults around and acting like adults, and then playing with their Barbies. In other words, feminism co-opted for cash. Like, are we that stupid?

All day I waited in vain for some chance to contribute our ideas rather than sit and listen to people repeat how great Obama has been for women. 

The program was designed last minute (but Michelle is organizing it! So, come!) and was really hard to decipher. When is lunch? When is this speaker? That event? And what happens since we’re running so behind? When does Michelle show?

A long star-studded day – president Obama, Michelle Obama, Joe Biden, Oprah, Nancy Pelosi, Loretta Lynch, Kerry Washington, Mariska Hargitay, Amy Poehler, Warren Buffett, and many other luminaries addressed the 5000 women gathered at the summit today. (The most engaging speaker by far was Michelle Obama. I have to say I’d be very surprised if she were to forego a political career in the near future. So watch for that).

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Oprah & Michelle chat about women, men, and Michelle’s life.

The main goals of the event weren’t really to highlight the real issues that affect women but to highlight a) the Obama administration b) nonprofits, products, and programs related to women and girls produced by Poehler, Hargitay, Goldman-Sachs, etc. And also to drum up support for a loosely feminist-framed Hillary administration.

Overall I’d describe the event as a women’s Democratic Convention where the achievements of the Obama administration were repeatedly highlighted. Nancy Pelosi concluded her comments with “Let us all thank President Obama for….” which sounded remarkably like a prayer, and gave me the heebie-jeebies.

No opportunity to mention the future “Madam President” was lost – including by Obama.

Mariska Hargitay (whom I love) highlighted her Joyful Hearts Foundation, Amy Poehler reminded us of the Amy Poehler Smart Girls program, Goldman-Sachs brought in a line of successful businesswomen who benefited from their 10,000 Women financing programs, and so on. We admired the wildly successful business women who got Goldman Sachs cash, and sat thinking, like Tributes in the Hunger games, we could make it too. If we only tried hard enough and bought into Goldman-Sachs.

No opportunities presented themselves, whether in the large sessions or the small ones (the ones I attended) to ask questions or raise problems or critiques. In my ‘Solutions Seminar’, we were told quickly before the session started, that due to lack of time, the Q&A section of the panel had been cut. So sit back and enjoy your celebrities.

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Like everyone else, I took a me-with-Obama-on-big-screen selfie, but I assure you, he was in the room. I want him to know, I was thinking, Okay, you’re cool, and you do a great slow-jam-the-news, but no more drones and no more deportations, okay? … He wouldn’t be listening though. So I just got a selfie.

During his speech, Obama actually used the construction of “we” have to serve as examples against Them with their oppressive patriarchal structures and cultures. Excuse me while I hurl. In the Obama speech, I restrained myself with great difficulty when he made a resounding call for desperately needed social change, and I wanted to shout Yo! Mr. Hope! You had 8 years! And what’s with the drones and the deportations! Except I didn’t really want to be pursued by the Secret Service hotties just that evening.

The main take-away for me was the opportunity to network and chat with the activists and change-makers at my table, such as Dilshad Ali of Patheos, Hind Makki of Side Entrance, Aisha Rahman of Karamah, and many others. But we were instructed to remain at these tables for the duration of the day – which means we had no opportunity to network with anyone who wasn’t already in our networks. The only new person I met was a pediatrician from Evanston who was in the lone, snaking queue with us that morning.

I exaggerate. I had other take-aways too. The fact that most other women are far better at professional fashion than I am. Stunning, really, but also sadly dedicated to high heels in a long day of a women’s summit.

I also learned how to generate a photo-op for the powers-that-be, deploying diverse women change-makers nationwide without actually involving these women in any dialogue or change at all. If you or your friends were able to get a word in about how to effect real change, you’d be the exception. You’d be the backstage groupies.

In other words: how to co-opt feminist politics for a photo-op. Well-played, Washington, DC. Once again – well-played.  

 

Gender activism: within the system or without?

wadudAt times, I hear some Muslim women scholars sniff at activism. I hear people say that the activists who educate young women in conservative seminaries and teach them wifely obedience are superior to such scholarly activists who rock the boat, jettison baggage, and demand new gendered frameworks. I hear people say that such activists could have continued to be highly regarded scholars in “mainstream” religious circles, and that it was their own fault that they demanded too much, made too many big statements, and demanded – for instance – prayer leadership, the right to divorce, and so on.

This is an age-old debate of course: work within the system and slowly accomplish some goals, impact a large number of stakeholders, and slowly achieve change? Or demand more, and turn large numbers of mainstream community members against yourself – and potentially get them to dig in their heels even further?

I disagree with such claims – that working within the status quo is the only true path to reform. With all respect to warriors on the path, quiet, patient work within the system is one of the paths. We need all our warriors on this path. Scholar-activists like Amina Wadud have blazed a path for all of us. Whether you agree with her or disagree, she helped raise everyone’s expectations. For my part, whether you find your spiritual home within the status quo or not, if you work toward egalitarian ideals, we are all sisters & brothers.

But even if I love your community service, be warned, some of us wage war against the status quo.

National No Bra Day

“Encouraging women to show off their braless chests in the name of awareness won’t save anyone, but its message to breast cancer patients and survivors is clear: Your disease is about your secondary sex characteristics, not about you” – Christina Cauterucci.

In my last blog post, “Dear breasts”, I talked about what it means to have “survived” breast cancer with a mastectomy and breast reconstruction. Truth be told, though I’ve been commended for my courage in speaking out, it took me 6 years to do so.

Today, on “National No Bra Day,” I am sitting here facepalming at the sight of innumerable photos of women supposedly bringing “awareness” to breast cancer by letting the girls out. As with the share-bra-related-information-in-your-Facebook-status gimmick, I struggle at the edge of solidarity and the inevitable sensationalism of all campaigns. I must believe that there are at least a few well-intentioned individuals who have contributed to this “Fauxliday” as Cauterucci puts it. But I struggle.

Why? Because these twitter pictures of celebrities sharing their perfect breasts with the public are yet another slap in the face for mastectomy-survivors like myself. How is it that their flaunting their still-existent-nipples will help breast cancer survivors?

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A journey through annual conventions of the Islamic Society of North America

 

imamapaloozaMany years ago (okay, in 1991), when I was not an American, and had never thought I would be an American, I was working at the International Islamic University (IIU) and I heard from a student tell of an event called the Annual Convention of ISNA (the Islamic Society of North America). This dear friend of mine was a religious misfit like myself, and her mother had hoped she would find a nice, educated, liberal, upwardly mobile professional, and religious boy at ISNA. So her mother packed her off to Chicago where she attended talks by Imam Siraj Wahhaj and Jamal Badawi (she got the two of them mixed up, and told me how Jamal Badawi was amazing! Tall and Black and amazing! Okay, in the photo below, Badawi is on the LEFT.) But she met no nice badawisirajboy – probably because she wasn’t really focused on the job. A year or so later, in 1993, I met a couple of Canadian students at the IIU, young women who were on friendly terms with ISNA leaders and who had organized major events such as the protests against the Bosnian genocide. They told me more tales of ISNA. 

It crossed my mind – how completely amazing and insane would it be if I, the niqabi from Kinnaird College, could attend ISNA. Most of the people in my social class did not quite get my religiosity. As for those who did get religion, they criticized my lack of traditional gendered behavior and my love of English literature. I was so lonely as a religious woman. I felt being at ISNA would put me in a cerebral network of love and awareness. All I’d known so far was Jamaat-Islami (whence I was now an exile, because I was no longer an Islamist) where the boys tended to be conservative, macho, and more interested in power politics than religion. Then I’d known my Chishti Sabri silsila where most of the people were – well, women. Radiant, smart, and devoted women, but, mostly, upper class. In case this escaped you, dear reader, I’m not upper class. I’m barely hanging on to middle class. More on that later. 

A few years later, in 1996, as a newly arrived graduate student, I attended ISNA in Columbus. I had no money, and was kindly accommodated in the interns’ hotel room. I felt completely out of place among these very American undergraduate women who were so comfortable with each other and with their very informal cliquishness. When I spoke (in my strongMatrimonial-20141 angular British accent, completely pure of midwestern slang) about the ISNA experience, they stared at me quietly, and then turned back uncomfortably to talking about Stuff. I felt dreadfully Pakistani, so foreign, and so disappointed that I wasn’t in heaven even though I was at ISNA. And no boy had liked me yet. 

Several ISNA’s later, I am off to Detroit for ISNA 2014

It is now 21 years since I first heard of ISNA. I still have no money, but I have friends – friends I can crash with. I did eventually find a man, by the way. I didn’t meet him at ISNA, but I met him at the cousin of ISNA (AMSS, which is now NAAIMS).

isna-hallwayNow when I attend ISNA, I am overwhelmed by the crowds of uncles, aunties, sisters, brothers. I smile indulgently as I pass through the hotel lobby where young Muslims flirt and make eyes at each other. I roll my eyes at the fanfare around the arrival of celebrities – and then I try to shove my way in so I can catch a glimpse of Shaykh Hamza Yusuf. I am excited to see friends I haven’t seen in years. On my way to and from lectures and events, I see friends from all over N. America. I am connected now, and I am home. As home as possible. 

 

Check out my Meet the Author event on SUNDAY AUG 31, SESSION 12M, 11:30 AM – 12:45 PM. Room 311AB. 

Warning: scam job ads that seek to prey upon women

The internet jungle preys upon the innocent. Someone I know has been looking for a job, so I had my eyes open. I was poking around university Facebook pages when I saw a note on the Beaconhouse National University FB page that said:

“A reputable company urgently requires for HR Assistant (only Females) Fresh Graduate or Graduate students Salary Package-Rs.16000-20000 K- negotiable. Apply at nida5448@gmail.com. Subject line HR Assistant”.

It sounded off, but then I thought, maybe it’s not so strange here. I sent her the note.

She contacted them, and the ‘company’ requested a skype interview.

On skype, the man immediately started insulting and threatening her and told her she’d better do everything he said or he’d post nude pictures of her on the internet. She immediately quit skype.

Pakistani friends: please warn your students and young women not to fall into such traps and not to be intimidated by anyone.  I have found the same ad posted on a variety of job-related FB pages. It is truly criminal because they know people are desperately seeking jobs.

‘Just right’ British gender: J.K. Rowling and Enid Blyton

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My bedtime reading these days is ‘Harry Potter and the Order of the Phoenix.’ A few weeks ago, I was (re)reading ‘Last Term at Malory Towers.’

For those of you who do not live in a time warp, the latter is by an extremely prolific British author, Enid Blyton, who published between the 1920s and the 1960s. If you have read Enid Blyton’s Malory Towers and St. Clare’s series, Harry Potter’s dorm stories with their focus on school discHp4gf_029Durmstrangipline, food, and social relations will ring familiar. When I was growing up in Pakistan, Enid Blyton’s books were all the rage. I consumed them hungrily (though my English teacher cautioned us that they were not particularly well-written).

Anyway, in ‘Harry Potter and the Goblet of Fire,’ we meet the visiting foreign students from Beauxbatons and Durmstrang. Beauxbatons students are hyperfeminized (in the film, all vila) while the Durmstrang kids are hypermasculine, gruff, and dark (I mean, Malfoy almost went there). Beauxbatons is, of course French, while Durmstrang is somehow Northern European.

The British students at Hogwarts, however, possess a ‘just right’ gender quotient. Sensible nerdy Hermione and tough hex-queen Ginny sniff at the feminine wiles of Fleur Delacour. Ron and Harry are uncomfortably weirded out by Victor Krumm’s “grumpy” good looks and lack of humor. The Hogwarts / British students are perfectly balanced in the middle. The men have eyebrows that are not terribly noticeable and the women are not excessively attractive. Just right.

Enid Blyton, mostly writing in the 1930s-1950s, uses American and French characters as foils to the perfect British balance of third-year-at-malory-towers
gendered culture. The American Zerelda Brass (Third Year at Malory Towers) is obsessed with her appearance, wears (gasp) makeup, hates sports, dislikes getting sweaty and muddy in the lacrosse field, and looks forward to a career as a famous film actress. The English girls, with their rough and ready ways, their forthright (um, rude?) manners, and their sensible, tomboyish ways are shocked and amused by their American friend. Zerelda means well, but she gets into a lot of trouble until she learns to become “sensible.” The unscrupulous, funny, mischievous French students (Claudine, for example, in St Clare’s) must also learn English and sports (and that “English sense of honour”).

Gwendoline Lacey, though English, is considerably wealthier than the other Malory Towers girls: her task is to become a good deal more sensible and middle class, less attached to her notions of femininity (braid your hair! get in the pool! stop worrying about your skin!), and eventually, to face the fact that she will be employed as a (gasp) secretary or something.Harry-Potter-and-the-Order-Of-The-Phoenix-rupert-grint-17184344-1920-800

Rowling’s writing is way, way, way better than Blyton’s but both writers position British / English gender as being just right, moderate, neither too feminine nor too masculine, in contrast to their counterparts elsewhere in the world. Rule, Brittannia, in gender moderation.

Trick mother’s day question

2014-05-08-happymothersdayOn this ONE day of breakfast in bed, flowers from low-wage moms in Colombia, and mother’s day discounts at various stores, answer me this question:

Which would you rather have: a) overwhelmingly positive associations in the public imagination as the universal symbol of sacrifice and love, TV commercials about diapers, peanut butter, laundry detergent, and Pine-Sol centered around motherhood, and flowers once a year? Or would you prefer b) actual things like more maternity leave, childcare, vacation time, and a shorter and more flexible work week?

And yes, it’s a binary because clearly we can’t have them all …

Transitioning to a new parenting job

This year, Raihana’s spring break did not coordinate with mine. I spent my spring break freezing my rear end off in Toronto at the Comparative and International Education Society conference. One week after my break had ended, her primary school began its break. I was scrambling from teaching in Decatur to a highly dissatisfied almost-8 year old. She pronounced the beginnings of her spring break boring, and demanded my companionship.

 

On Monday, I realized that the slightest endeavor at thinking a work-related thought to its conclusion would be impossible alongside the nonstop high-energy demands of my daughter. My parental ethic, by and large, means that I am uncomfortable allowing TV and computer games to babysit Raihana. I know that she would be happy to read, play Minecraft, or watch Ruby Gloom for several hours, but that would be too easy. When was this job ever easy?

 

So I put aside all my work and decided that the most I would do this week was answer work emails and do short tasks. “Mama,” Raihana said, “Abbu has gone to work, and you’re not going to Decatur, so I have you all to myself!” I felt that I was quite successful in being a loving and fun parent though, by Wednesday, I felt like my brain was being suctioned out of my skull. I was a dedicated parent, and I was not allowing work to turn me into a second-rate mom.

 

Teachers claim my daughter struggles with transitions. Well, on Saturday, I found quite intimidating the prospect of transitioning to writing / class prep from a nonstop parenting-fest. I felt like I was trying to put the brakes on while driving on an icy highway, or rev the engine up to high speed immediately on a cold morning.

 

When Svend took over, and I brushed Raihana’s hair before heading out to resume writing, I felt that I could afford a moment of self-congratulation. “Did we have a good spring break together?” I asked Raihana,
Pausing between shrieks and demands to stop brushing her hair, Raihana snapped, “I had a horrible spring break.”

 

I stopped between brush strokes, shocked at her sincerity and surprised at how hurt I was, “What do you mean?”
“I wanted to be by myself,” she went on, “and you were always breathing down my neck! And now spring break is over and I have no time to myself!”
Until now, my main struggle has been reassuring Raihana that I was present for her, that I wouldn’t neglect her, and that she was my priority. “But you love your work,” she has accused me. “Why don’t you spend time with me, Mama?” So I have tried, and tried. Suddenly, after pushing and shoving, after making me adjust and re-adjust my attitude to life, work, and parenting, I feel like she is changing game plans on me. One day, I’m complaining about the daily grind of parenting, the wrenching struggle to show up and do a good job at work while my heart is with my daughter who is disappointed that I’m a no-show at some school event. The next day, I feel like I am getting summarily laid off. One moment, I’m dealing with the daily grind, the next moment I’m sitting in a recliner with a beer gut watching home shopping ads. One moment, I’m preening myself over my lengthy scholarly resume and the next moment, I’m in the Apocalypse and wishing I’d spent some time learning to hunt rabbits and construct shelters.

 

Is my 8-year old turning 13 already? Her childlike exuberance suddenly shifts and I see flashes of a pre-teen, like some strange transmissions on a television screen, like flashes of demon in a child in some poltergeist movie. Time to prepare myself for a new child, when I’d never figured out the first one.