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Shame

January 23, 2011

Until now, I’ve always lived in international cities: Miami, New York, Tokyo; even our years in New Hampshire had an international flair because a third of Chris’s business school class hailed from abroad. Here in Dallas, the closest thing to an international community I’ve found is the line at the cashier at Costco up in East Plano. It’s always a highlight of our trips to Costco: the visual reminder that we live in a world where people are different from one another, and yet all shop at Costco. It’s where Chris and I go when we get twitchy at the same-same-sameness of our regularly scheduled lives.

When we lived in Tokyo, our apartment was around the corner from the Saudi embassy, and there were several women, other mothers, I would see frequently, at the park, and walking on the street wearing their burqas and pushing strollers with babies the same age as mine.  I’m usually good at making small talk with other women, but I never got beyond “Hello” with the wives of the Saudi embassy staff. I tried, and they tried, but it was 2003  and motherhood was not enough of a common bond to overcome the global context that made conversation beyond “Hello” and “Nice day, isn’t it?” unbearably awkward.

Cancer is different.

I’m not a particularly talky person in the waiting room. My first impression of the lounge outside the Breast Center at MD Anderson Cancer Center was that I was in a room full of women in their sixties wearing wigs, and that I didn’t fit in, and I didn’t want to fit in. Pregnancy-related breast cancer is rare enough, or frightening enough, that it doesn’t Google auto-complete, and the most relevant article to link to on my disease is to the Times of India. Finding anyone in the breast cancer waiting room that I had anything in common with was rare. One woman, a woman from California only slightly older than me  with children only a little older than mine, chose to sit with a blanket covering her from the top of her head to her knees, face included, rather than participate in the small talk of the radiation therapy waiting room, small talk that revolved around “we’re almost done, we made it!” That attitude didn’t apply to her, and it didn’t apply to me either, except in retrospect, but back then, the odds of my being here now was less than half, and I knew it. The prognosis of my veiled friend from California was even grimmer: she had inflammatory breast cancer, and it wasn’t responding to radiation.

“They don’t understand what it’s like,” I said to her once in sotto voce, before she retreated beneath her blanket. “When you have small children, it is different, and worse.”

“I know,” she said. “Thank you.”

I often wonder whether my friend made it. I doubt it, but I hope so, and I still pray for her and her family, and I always will.

“I’m not glad you’re here,” I said to her once. “but I’m glad our paths crossed.”

The only other woman with whom I felt any sort of connection during the eight months I was in treatment was a woman with whom I had one conversation in the restroom of the chemotherapy floor at MD Anderson.

I once told my oncologist, who was a hospital administrator 80% of the time and a doctor 20% of the time, that the chemotherapy floor upstairs was like going to a really good spa.

“I’m glad to hear that,” he told me. “We put a lot of resources into that facility.”

I was washing my hands in the restroom in the chemo spa next to a young woman wearing a veil. She smiled at me, so I asked her whether she was here with a relative. “No, it’s me,” she said.

“Me too,” I responded, “But you knew that. Why else wear a ski cap in Texas in July.”

“Is it easier when everyone always covers their hair so you don’t stand out as much?” I asked her.

“Yes and no. I don’t think it’s ever easier,” she said, and she was right. We chatted some more. Her husband was back home in Saudi Arabia with her son, the same age as my son. She was two years younger than me, and had been to college. Like me, she found her own breast cancer, although her symptom was not the tell-tale lump: her breast began to bleed out the nipple. “So of course, I came here right away,” she said.

I think of her whenever some smug person tells me, as smug people often do, that “over there” in the Middle East, mortality rates from breast cancer are much higher because women don’t have equal rights and they are ashamed of their bodies and doctors don’t examine them, and there is a taboo, and aren’t we lucky to be Americans with our enlightened attitudes about women’s health.

When I lived in Japan, word on the street among Western expats was that if you found a lump in your breast you’d better fly home and have it checked out because in Japan, you might go in for a biopsy and wake up with a mastectomy while your doctor discussed your case with your husband, as doctors in the U.S. used to do before Betty Ford stood up for us. Japan also has the lowest mortality rate from breast cancer of any industrialized nation, whereas Denmark, not known for prudery, leads the world in breast cancer deaths.

I don’t know what the relative mortality rate is from breast cancer in the U.S. versus the Arab world. I haven’t been able to locate any reliable information on this rumor, but it seems to me that relative mortality rates from  breast cancer are a lot more complicated than some fictitious link between wearing a body veil versus Daisy Dukes, bikini on top. If I had to wager a guess, I would think a stronger link could be drawn to “Can afford to go to the doctor” versus “Can’t afford to go to the doctor” adjusted for “Is there a doctor around anyway?” than to relative rates of national modesty and attitudes toward women’s bodies.

You do see a lot of women in burqas walking around MD Anderson, about as frequently as I would see women in burqas walking around Roppongi around the Saudi Embassy.

My take is that the richest people in the world can afford to go to the best place in the world when they get cancer.

On the one hand, there is a lot to say about the global disparity in heath care, as well as the disparity in health care standards between rich people and poor people in the United States, and not enough people are saying it. On the other hand, do I find it comforting to know that the people who could go anywhere to get their cancer treated go to the same place as me? Of course I do. Am I absolutely jazzed that my plastic surgeon was the man picked by the Saudi Royal family to operate on one of their family members, a woman whose case presented exactly like mine? Of course I am. Am I slightly obsessed with curiosity as to whether that member of the Saud family is the same lovely young woman I met in the restroom years ago? Yeah. Am I going to ask my doctor? Not on your life.  But if it is, I’m glad she is doing okay.

“So of course I came here right away,” said the young woman from Saudi Arabia I met in the restroom on the eight floor of the Mays Clinic at MD Anderson Cancer Center three and a half years ago.

The myth that women in Saudi Arabia die of breast cancer because the men in charge allow it to happen seems to be a misguided notion at best, and more accurately described as a filthy hateful lie perpetuated by bigots in an effort to dehumanize and demonize “our enemy.”

Is America the gold standard of healthcare? Yes. Can we do better at spreading the quality of care around? Yes. Do you still occasionally hear horror stories about health care in America?

Yes.

That any woman would have to travel to a filthy charnel house to seek medical care horrifies me; that it happened in the same city where I went to college just makes me even more terrified.

Here’s what scares me the most  — this quote from the Associated Press story by Maryclaire Dale:

Johnson, then 21, had a 3-year-old daughter when she became pregnant again. She said she first went to Planned Parenthood in downtown Philadelphia but was frightened away by protesters.

“The picketers out there, they just scared me half to death,” Johnson, now 30, recalled this week.

Someone sent her to Gosnell’s West Philadelphia clinic, at the Women’s Medical Society, saying anti-abortion protesters wouldn’t be a problem there.

Denial. Fear.

It’s why women don’t get mammograms. They’re afraid of what they might find out.

It’s the belief that if you believe something strong enough, your dreams will come true.

Denial. Fear.

If we make abortions illegal, or difficult, people will stop having them.

Denial. Fear.

If we just turn back the clock, then all of our social problems will go away.

Fifty years ago in the United States, a woman who found a lump in her breast went to the doctor who would operate, knowing that she might wake up with a radical mastectomy while her physician discussed her case with her husband.

Fifty years ago in the United States, a woman who felt that she had no choice but to terminate her pregnancy went to a back alley doctor for an abortion, knowing that the procedure might kill  her or leave her sterile. The horror of back-alley abortions was the driving force behind the movement to legalize this procedure. And here we see the direct result of the movement to stop it.

Rich women will always be able to travel to Europe, or Canada, or New York to obtain an abortion just as rich women are able to travel to Houston, Texas to treat their cancer.

I’m not sure where I want to go from here. I do know one thing: I don’t want to go backward.

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7 Comments
  1. Kalyani permalink

    I know you’re writing about a lot more weighty stuff here, but I’ve got to say – as someone who has never been pregnant but is in her third year of lactating (oh and as someone who has a strong family history of breast cancer) – that I’m pretty peeved at the Times of India/University of Illinois research. The paper discusses pregnancy, but then talks about involution, the changes in the tissue after lactation ends, as being key. LOTS of women who have done the opposite of me – born children but not nursed them (like say my son’s birthmother) – would probably be happy to explain the difference to the researchers.

    • It’s astonishing the variables that medical researches have to process through to get meaningful results that can lead to viable treatments. I never would have thought of this if you had not pointed it out. Thanks 🙂

      Yay you for breastfeeding!

      ER

  2. Nancy Kirk permalink

    Someone should send this to the Huffington Post. Best thing I’ve ever read on the disease. At least to Susan Komen or somewhere so that more people can see it. Now I have to stop and go find a tissue. So glad you are here. xo

    • Thanks Nancy. At some point, I’ll have to put it all into a book with a good narrative arc — but then I’d have to fact-check things like breast cancer rates in Saudi Arabia.

  3. I’m trying to figure out where the topic “Shame” fits into all you describe–international cities, international health treatment ‘spas’, notorious abortion clinics–and am guessing that the shame has to do with the fact that although America has a Gold Standard of health care, it is not accessible to most Americans. That’s a shame.

    Is throwing a blanket to cover your whole self a sign of shame, or is it an attempt to cover over the terror of the truth from everyone, especially yourself?

    But you all who have been on the front line of the fight against breast cancer, are to be Honoured for your Courage, in spite of the fear, and not be ashamed. You’re forging a path for others who are caught in the same bind. You have the compassion born of experience to reach out to others not as fortunate as you.
    —-julie.

    • Julie, thanks for your thoughtful reply. I’m always walking the line between being subtle and being obtuse — no, scratch that. I think I’m subtle but actually I’m wallowing in obtusity.

      By titling the essay “Shame” I was mostly referring to attitudes about women’s bodies, particularly the imposition of the concept of shame by Westerners who have no concept of modesty to explain away the modest dress worn by some Muslim women. I don’t particularly understand the burqa but I also recognize that as a Westerner, I don’t particularly understand modesty either. I was also alluding to the shame of having breast cancer, which is something you can’t really understand until you experience the betrayal of your own body. In addition, I was referring to the shame of our patently inequitable health care delivery system, both within the U.S. and abroad, to the shame women feel when they are seeking out an abortion, and to the appalling shame that in this day and age a back-alley butcher shop masquerading as a provider of health care for women flourished in an American city for decades.

      Love you. Thanks for reading my blog!

  4. Aunt Lee permalink

    Sadly, one hears horror stories about health care in America routinely in certain neighborhoods. And what is worse is noticing that the attitude is resignation; it’s been going on so long that fatalism has set in and continued down the generations.

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