“So, your cancer’s gone now?”

I’m always at a loss when people ask me if I’m “okay now.”

The line between having cancer and being well is never clear.

“So your cancer is gone now, right?” they ask.

“I don’t know. I’ve completed my treatments.”

“So you’re in remission!”

“I mean – maybe.”

“No tumors anymore, right?”

“Well, not that I know of.”

“That’s great!”

“Yeah, I mean there are side-effects, and the radiation is said to age you. There’s also the hormone therapy and its side effects.”

“Oh. You’re better now, though, right?”

By this point in the conversation, my interlocutor is looking at me funny. Their eyes say, “Why are you being so negative?” Their narrowed gaze asks, “Are you trying to hold on to that cancer card? Because we can’t be expected to grant you that card indefinitely, you know. I mean, bald people in chemotherapy attract sympathy. Surgery is tough – well, just the mastectomy, maybe, because OHMYGAWD no boobs. As for detection, uncomfortable mammograms, painful biopsies – those you need to be grateful for. …

“But once you’re done with all those, and you look normal, you really need to return that card and get back to your scheduled activities. Sympathy is exhausting. Especially Cancer Sympathy. That is utterly draining. And we really have to move on from it eventually.”

So at this point in the conversation, I say, “Yeah, I’m much better!” and let them off the hook. If it’s a supervisor or colleague, I’m under particular pressure to demonstrate wellness.

That way, maybe they can wear a “Fight Like a Girl” t-shirt, or a pink ribbon, or run their Breast Cancer marathon, and be done with it. FP_FightGirl.jpg

Recently, I’m much more likely to get injuries and aches. Suddenly, in the past few months, I’ve  realized my knees won’t bend easily. Sitting in prayer is difficult. Sitting in a plane for a long ride is difficult.

Oh wait, sitting in a chair is difficult.

Last night, I did my back in last night, and was amazed by how much my day changed from what I’d envisaged. I had a long lost of things to do, but ultimately, I sat there, thinking, only: IF I MOVE, IT WILL HURT AGAIN. Today, I had trouble sitting on the toilet seat long enough to finish; sitting on my comfortable recliner; getting in and out of bed; getting stuff out of the fridge … You get the idea.

But no one associates back pain with cancer.

Despite my back, I made it to the dentist. She examined my X-rays and told me, “You’ve got some dental bone loss.”

Of course. The hormones I take to slow the growth of breast tumors can decrease bone mineral density, and increase my risk of developing osteoporosis. It can prevent cancer – but make it more likely I’ll develop mobility issues.

This medication can also impair my thinking. (I’m an academic).

I’ve noticed joint pain and stiffness, especially my ankles and feet. Backaches and headaches are more likely. Depression.

Insomnia. Which is the bane of my existence.

But people don’t associate insomnia with cancer. Insomnia doesn’t come with baldness.

Rarely in all my treatments have any oncologists or nurses really acknowledged that the treatments and hormone therapy have problems and serious side effects.

Heck, the treatments can give you cancer. Other cancers.

When you’re faced with serious health issues that make normal life impossible, you can be pardoned for contemplating quitting the treatments that can lead to you – getting a recurrence of breast cancer.

No wonder it’s common for women to quit the medications that are supposed to help prevent breast cancer.

Ah, choices, choices.

Know this: the line between having cancer and being well is never clear.

Thanks to your insurance, your doctors, and the nature of the medical industry, medical imaging will not happen very frequently – unless you’re willing to pay thousands of dollars out of your pocket – so certainty is impossible to come by. Each kind of imaging tends to be specific for certain types of cancer.

And once your treatments are over, the only way you will be able to check is if you detect symptoms, e.g. lumps; but they’re not always detectable.

ultrasound.jpgNot long ago, I detected what I thought was a lump. It occupied my mind for weeks until I was able to see my oncologist and he checked the “lump” and approved an ultrasound. The document on the left liberated me from weeks of wondering where my life was about to go now. It took time; I had to take time off to go get the ultrasound; and then I had to hurry back to work and my regular routine, to establish that I was no slacker.

Meantime my entire system had to quickly bounce back from preparing for a whole other trajectory. All of that, I had to do alone. On the outside, all anybody knew was: “She had a scare. It was nothing.”

The line between having cancer and being well is never clear.

 

A student assignment that says: thanks, but quit with the one-dimensional representations

I’m going to take a moment to share a student’s art assignment this semester.
The project was created by my student Mesut Mamaloglu, as a thoughtful art project in my class “Islam in America” at American Islamic College.
 We the people protest splash Fairey.jpeg

The project is a play on Shepard Fairey’s poster of the Muslim woman draped in a hijab made out of a U.S. flag.

Mesut critiques the perpetual representation of Muslim Americans as religious Arabs, or dressed in Middle Eastern or traditional religious attire. He rejects and the essentialization of this diverse community in one-dimensional and monolithic forms.

Such representations of Muslim Americans, even when supposedly shaped by Islamophilia, fuels Islamophobia.

This theme runs through my book Muslim American Women on Campus as well.
17883547_1288714034508944_8505357658810891198_nTo counter this monolithic representation, Mesut used software to work into the original image a mosaic composed of a hundred images of a variety of Muslim people from many walks of life – including celebrities, athletes, musicians, and a lot of regular people.
Mesut pasted this image onto a cardboard monitor that he created, to represent the spaces of the internet where these representations take shape, are circulated, and become solidified in public discourse.
This mosaic shows a complex and multidimensional community.
In the wake of the election and the Muslim Ban, popular culture that cashes in on liberal causes has chosen the Muslim image as their shorthand for pluralism, liberal inclusion, anti-Trumpism, and general coolness.
Of course there isn’t enough time to complicate this discourse, nor is liberal discourse typically profound enough to allow the voices of the underrepresented and marginalized to speak for themselves. White representation of Others must of necessity be simplistic. So the image of the hijabi Muslim woman suffices to say all. And it doesn’t matter that the vast majority of the Muslim American community is excluded in this representation, because of the way tokenism works in liberal spaces.
Tokenistic liberalism tells us: Be grateful for the hijabi image. Liberal culture doesn’t have room for more than that single image.
Mesut’s project rejects that shorthand. We are many. Sorry for the inconvenience, but no shorthand will do.

“Umar & the Bully”

In 1996, when I was working three part-time jobs in London, I wrote a children’s story for the Islamic Foundation (UK)’s first national children’s story writing competition. At the time, I lived in Yusuf Islam/Cat Stevens’ rooming house on Walm Lane, not far from Islamia Public School, sharing the house with two Bosnian refugee women, one Lebanese teacher of Arabic, and, for a short while, a pregnant teenaged Muslim convert.
Perpetually short of cash, when I heard about the story writing competition and the £500 award, I set to work writing a story. I really needed that cash. But how to type it up? One of my employers, for whom I edited and translated documents, smirked and said, “Only a fool would buy a typewriter in this day and age.” But I didn’t own a computer (this was 1996, remember), and I was making so little money that the government helped me pay my rent. So, like a fool, I went to Staples at Brent Cross, and bought a Brother electronic typewriter. I’d grown up using an old Remington typewriter purchased in the early 1970s, and I hadn’t had access to email until 1994, so I didn’t weep for a computer. I was grateful.
In my little room with its twin bed and the radiators that froze at night, I typed up that story, and then I sent it off to the Islamic Foundation in Leicester.
The first time I wrote stories was at the age of six. My mother liked my story, and encouraged me to send it to The Pakistan Times “Children’s Page.” They published it. I wrote more stories. My friends at school read my stories and liked them. Then I wrote poems – the kind with rhyming couplets. Then, for a time, I wrote preachy letters of protest that were published in the Letters to the Editor. I typed them all up on that old Remington typewriter that my parents brought with them from Britain, when my father did his Ph.D. at Chelsea College of Science and Technology. I used that typewriter from 1974 to the late 1980s. I have a big zippered binder full of clippings of stories, poems, and angry letters that were published in The Pakistan Times. Naturally, hey are embarrassing for me now.
It was Dr. Farhat Hashmi (then Director of the Women’s Section at the International Islamic University), who first introduced me to her personal laptop. As lecturer of English at the IIU, I typed up official letters for her on that laptop. But no email. We didn’t have email back then. I first met email in 1994 when I went to Cambridge.
Back to the story I typed up and sent for the competition. In August of 1996, I suddenly got notification that Indiana University had some financial support for me to pursue my Ph.D. there. They’d offered me admission in 1995, but I deferred admission since I had no money.
Soon after I arrived in Bloomington, I heard from the Islamic Foundation: my story, Umar and the Bully, had won first prize and £500. It was to be published.
UntitledThe hero of Umar and the Bully, Umar is named after my nephew. Umar is developmentally challenged, a lovable huge heart of a boy – well, he’s a young man now – who was the first baby in my family. Umar’s struggles to love and be loved have always broken my heart, as has his treatment at the hands of so many people. Umar has always fought bullies with love. Umar in my story – a young boy in elementary school – stands up to bullies to protect a little boy, Asad (my younger nephew Asad was small in stature, sensitive, and brilliant).
Years later, I assumed the book was no longer relevant.
Imagine my surprise when I discovered, a few weeks ago, that Umar and the Bully is still being used and recommended for anti-bullying work in schools.
Untitled
In the book Bullying Prevention & Intervention: realistic strategies for schools the authors discuss a 2006 study that
asked 3rd grade students and teachers to rate children’s books about bullying. From 24 children’s books on the subject, the children listed their top five most-liked books in terms of teaching about bullies.
Wow. Umar and the Bully was their third favorite.
This is especially surprising to me since my story is explicitly grounded in the Muslim spiritual resources that the protagonist Umar brings to his experience of bullying. And the study was conducted in Nebraska, with children ages 8-9, 87% of whom were European-American. 17757314_1281538045226543_6489230648953932633_n
Intrigued, I searched again (because what is nicer than googling your own work?) I found a 2016 blog post by a school librarian, who spoke in glowing terms of Umar and the Bully, correctly stating that the book had been on her shelves for a “long, long time.”
It’s been around for 20 years, to be exact. I always thought of writing as a form of ongoing charity, or sadaqa jariya. You never knew what good it could do, long after the writer was dead (or long after the writer quit writing fiction). It’s nice to know that this little book I wrote in a state of poverty, wondering if I would ever have a real job, is still possibly doing some good in the world.