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On Valor and Vitality – Lessons from Senator McCain’s “Battle” Against Cancer

On Valor and Vitality

8.27.18

Senator John McCain’s “maverick” politics placed him among the most intriguing contemporary legislators. His policies and feud with the current president continue to inspire support and criticism from the partisan masses. But Senator McCain’s last year of life also inspired conversations about how we cope with illness, both individually and collectively.

In July of 2017, it was revealed that Senator John McCain had a particularly aggressive brain tumor, glioblastoma multiforme (GBM). In the medical world, GBM is an acronym that evokes a sense of dread and resignation. Of the many different shades of tumors, GBM is of a merciless ilk. Long-term survivors are rare.

His family’s announcement that he had “chosen to discontinue medical treatment” set off a new wave of commentary and sympathy.

Since last July, Senator McCain’s diagnosis had elicited a host of reactions in the public sphere and provoked meaningful conversations on illness and healthcare. Our understanding on these issues is ever evolving and, hopefully, maturing.

Here are three lessons to be learned from Senator McCain’s diagnosis and our collective response.

  1. Cancer is not a test of valiance.

Shortly after news broke of Senator McCain’s diagnosis, President Barack Obama tweeted: “John McCain is an American hero & one of the bravest fighters I’ve ever known. Cancer doesn’t know what it’s up against. Give it hell, John.” His well-intentioned tweet utilized the language we have learned to turn to when we hear someone has cancer. Fight. Brave. Battle. We turn people into soldiers because we want them to win, to beat the odds, defeat cancer. But as screenwriter/producer Josh Friedman described with raw and personal eloquence, “it’s okay to be a coward about cancer.” Some will be overwhelmed with fear and uncertainty. Those who do not survive were not weak.

Candidate Trump callously declared McCain earned his “war hero” title simply because he was captured. “I like people that weren’t captured,” he said. But heroes can be captured in war. And in life, even the strong can fall to disease. While valor is admirable in the face of illness or combat, it should not be demanded.

  1. Medical treatment does not always seek to cure.

Every day we are one step closer to understanding that a cure should not always be the goal of medical treatment. Hospice care and palliative care are vital branches of modern medicine that seek to improve quality of life in whatever remaining time a person has in this world. They can maximize mobility, comfort and quality of time with loved ones.

Some disease processes are simply evasive of curative therapy, especially in the context of advanced age. The scenario is common – at the behest of family, invasive procedures are performed on people who are overwhelmingly unlikely to benefit from them. Why? Because death and dying are difficult to discuss. We are suspended in denial about our mortality and the limits of modern medicine. We become vulnerable to politicized threats of “death panels,” fearing that life-saving treatment will be withheld from us when we are still viable.

Death and dying are normal. Functionally, financially and emotionally, it behooves us to make space for the tough conversations about end of life expectations. Dr. Atul Gawande explores this urgent need gracefully in Being Mortal.

  1. Healthcare must not be a partisan issue.

McCain’s eleventh hour thumbs down vote, just two weeks after brain surgery, on the repeal of Obamacare came with a flurry of speculation. Did his diagnosis and surgery bring him to cross party lines with his vote? McCain had been a vocal critic of Obamacare, as many are. High premiums and deductibles made the Affordable Care Act far from ideal for many Americans. But in the end, McCain took a more nuanced and practical view than many of his colleagues, insisting that any replacement not pull the rug out from under those with the greatest need. And John McCain, who had his share of medical scars, understood that our inescapable mortality makes meaningful healthcare a necessity for us all.

Rest in peace, Senator McCain.

The Throes of History

The following semi-fictional piece was originally published in Italian on March 7, 2016 in la Repubblica. I wrote it in honor of International Women’s Day.

In 1979, when Soviet tanks rolled into Afghanistan to begin a decade long invasion, my parents decide to stay in the United States and grow roots like the elm tree that shades our backyard. It is too dangerous to return to their homeland, they admit. Instead, they send my grandmother a photograph and she coddles my cousin, Jameela, born just three months before me.

“Are you happy you left Afghanistan?” I ask my mother, a civil engineer who will never work in her field, as she braids my hair into one proud plait that falls between my shoulders.

“You ask as if that is a simple question,” she says, wistfully.

I do not ask again, too busy singing nursery rhymes with other four year olds or eating orange slices during a half time break, my shorts green from an afternoon on the soccer field. I see my father, eyes tired from a two hour commute and clothes spotted with kitchen grease, scour the newspaper for word on the homeland.

They anxiously check the mailbox. The envelopes, blue onion skin paper with “par avion” stamped on the outside, sometimes bring good news. Other times, they reveal the death of an uncle, a home damaged by explosives, a plea for money. Even then, the letters don’t come often enough.

Jameela has memorized multiplication tables and recites prayers before sleep just as I do. Her two braids are tied with satin bows and she shines her patent leather shoes every day. As much as I hear about her, she is nothing more than a character in a book – the distance between us too great.

I spend my summer in the library, my back pressed to the spines of books. I ponder what Antoine de Saint-Exupery means in The Little Prince, when he writes: “What makes the desert beautiful…is that somewhere it hides a well.”

With rockets whistling overhead, Jameela hears stories from One Thousand and One Nights. Her family prays, like Scheherazade, to live another day. The Soviets will leave Afghanistan soon, they believe, and peace will return.

I learn to drive in a cemetery, my foot nudging the gas pedal as I circle the dirt road surrounding weather-beaten tombstones. I look, sidelong, at my father and he nods, a hand on the steering wheel to guide me through a turn.

Jameela’s parents watch her disappear into a burqa, forlorn. They reject two suitors, praying the Taliban will fail and there will still be time for her to go to school. Hush, they tell her, for the Taliban rage at the sound of a woman’s voice or the clicking of a heel. Women are sin, the Taliban say. It will be over soon, her parents promise but their promises are as thin as the blue paper on which they pen their sorrows.

I pack my bags to drift through the Alhambra, the architecture of a toppled regime. The blood is long gone here while Jameela is still in the throes of history.

Jameela’s family flees to India so that she can enroll in school, ride a bicycle and learn to negotiate a rickshaw fare. She sits with other teenage refugees and wonders if this country will be their new home.

I sit in a medical school classroom when the twin towers are struck down. The world, in one synchronized swiveling of heads, turns its attention to Afghanistan. For the first time in our lives, Jameela and I are connected by history. It is the first time Jameela feels noticed.

I press my stethoscope to the small chest of a child, his eyes looking up at me with a mixture of fear and amusement. I smile to put him at ease. You’re perfect, I tell him and his mother exhales a breath of gratitude.

Jameela’s family, deflated but hopeful, returns to Kabul since the Taliban have retreated into the shadows. She is studying to be a doctor in a country desperately in need of healing.

I watch the presidential debates, wondering if the billionaire will make good on his promises to keep people like Jameela or my parents out of this country. Jameela watches the female news anchor announce that the Taliban refuse to join peace talks. She thinks of the crumpled burqa in her dresser drawer.

And while I sit with my feet on an ottoman, a new story taking shape on my computer screen, Jameela presses her stethoscope to the chest of a girl who may one day become a doctor, a pilot or a president. Little girl, Jameela whispers, with a tenderness and confidence that brings the child’s mother to tears, you’re perfect.

-Nadia Hashimi

Guest Post: Teaching Students in Afghanistan via Technoloy

Lea Gabay is a recent graduate of San Francisco State University’s Masters program in TESOL (Teaching English to Speakers of Other Languages). She has taught English online to female Afghan students through two organizations AIWR, (www.aiwr.org) and SOLA (www.sola-afghanistan.org)

“I learned if I stand, everyone will stand, other women in my country will stand.

When I read these words from Roya, an aspiring female writer in Afghanistan, who writes for a mentorship program called the Afghan Women’s Writing Project (www.awwp.org), I am reminded of my role as a teacher: I seek to plant a small seed in the mind of my students in the hope that they will one day feel empowered to raise their voices against injustice.

I began teaching English lessons online via Skype to female students in Afghanistan four through a US-based non-profit organization called AIWR (Alliance for International Women’s Rights) (www.aiwr.org). AIWR’s mission is to support women’s rights and promote female empowerment through English language learning in areas where women’s access to education is limited. AIWR partners with a vocational training center known as KIMS (Kandahar Institute for Modern Studies) (www.theafghanschool.org) located in Kandahar, Afghanistan, to offer English classes online to male and female students at this center.

Little did I know that this experience of online instruction would eventually morph into an idea for a project that combined English language learning and a digital tool called VoiceThread (www.voicethread.com), which is used for online voice recording, to enable the student to talk about her life as a woman in Afghanistan.

For this particular project, I worked one-to-one from August to mid-October with a female student whose name is Mahida (name is changed to protect her identity) twice a week for 50 minutes. During that time, we focused on the topic of Identity. The goal was to encourage Mahida to reflect on her different identities and to make a decision about the use of specific words to describe herself by having her write a poem called “Who are you?” and record it with VoiceThread. The poem started with the phrase “I am….”. It was then up to Mahida to choose how to complete that sentence. Interestingly, the first sentence of her poem was “ I am an Afghan girl.”

There were also other opportunities during our sessions to talk about Mahida’s life in Kandahar: She told me about teaching maths at the university, the educational system in Afghanistan, her interest in writing poems about women’s rights, and her desire to study abroad in the future.

I was very eager to hear more about her experiences and really enjoyed teaching her; however, there were many challenges that came about during our lessons which significantly impacted the amount of contact that I had with Mahida. These were mainly due to the weak internet connection. Indeed, it was quite rare that I was able to teach a whole lesson without the connection dropping at least two or three times. Although this was for me a cause of great frustration, for Mahida this was really a chance to connect with someone from another part of the world and speak in another language regardless of the connection issues.

In spite of the many unanticipated pitfalls throughout this piloting stage, this was an extremely enriching experience; enriching because I was able to teach a very brave young woman who took the tremendous risk of participating in this program to learn English. I also learned about the many hurdles of living in a conflict-ridden zone where educational opportunities for women are few and far between and where local traditions continue to dictate gender roles and women’s status in Afghan society. While I may never truly grasp what it is like to be a woman in Afghanistan, this project taught me to listen and allow for Mahida to talk about her situation without making any kind of judgment.

I saw this experience as a way of building a relationship with Mahida, supporting her, providing her with a space to share her views and stories with me, and more importantly learning from her. To me, Mahida represents hope for the future of Afghanistan.

How the Afghan Friends Network is Opening Doors

For an uplifting read, check out this blog post highlighting the eagerness students have for education in Afghanistan and a group of folks looking to help them realize their dreams.

Taken from the Afghan Culture Unveiled website:

Humaira Ghilzai is the co-founder of the Afghan Friends Network, a non-profit that partners with local educators in Ghazni Province of Afghanistan to help students in grades 7-12 with math, physics, chemistry, biology and English. AFN currently has two Khurasan Learning Centers (KLC) for girls and one for boys. They serve over 750 students.

 

 

Discussing the Bacha Posh on Wisconsin Public Radio

Here’s the audio to my hour long chat with Kathleen Dunn of Wisconsin Public Radio from June 1st, 2015. I really enjoyed the comments/questions from callers on comparisons to the Sworn Virgins of Albania and growing up with the knowledge brothers are more important in America.