Disparities

http://www.nytimes.com/2016/02/13/health/disparity-in-life-spans-of-the-rich-and-the-poor-is-growing.html?emc=edit_th_20160213&nl=todaysheadlines&nlid=44005038&_r=0

Despite new medical technologies and increasing knowledge about prevention of a host of diseases, the poor live shorter lives than the wealthy. That’s the upshot of an article in today’s New York Times.

Last spring, when I spoke about The Alabama Project at the American Association for Cancer Research Celebration of Hope, I talked about the necessity of access, Whatever knowledge we gain in medicine has to be made accessible to people, regardless of their circumstances. It seems cruel to have answers to health challenges that aren’t made available to the individual suffering. Of course, I recognize the impossibility of providing some of the most costly care to every American, given constraints on the health care system.

But there’s more to the story. Edwina’s family lives in a setting that isn’t conducive to good health. Generations of unhealthy lifestyles contribute not only to how Edwina, her siblings, and son live, but also to how they think about health care. When Edwina goes to Princeton Hospital or Cooper Green for emergency care, she hopes to have her immediate concern addressed–pain or trouble breathing. But she has no expectation that her overall quality of life or odds of living a longer life are part of the deal.

Edwina has witnessed relatives dying young, some from disease and many from violence. A long life isn’t part of the equation. I wonder sometimes if Edwina’s assumption that her life will be short is tied to the reality of her days–each one is a struggle.

Homelessness meets heroism

My friend and editor from Cancer Today sent me a link to a story that appeared in the Philly news:

http://mobile.philly.com/news/?wss=/philly/news&id=367990461&betaPreview=redesign

It’s refreshing to see a story that celebrates the good that individuals do–wherever they happen to live. On the other hand, the fact that a person living on the street (in this case, in the station) who’s doing good is news suggests that homelessness means “doing bad” in many people’s eyes.

A Dutch Dilemma

The winter 2015-2016 issue of Cancer Today includes my article, “A Dutch Dilemma”: http://www.cancertodaymag.org/Winter2015/Pages/A-Dutch-Dilemma-smoking-netherlands.aspx?Page=0

This piece explores the decrease in–and ensuing confusion over–tobacco control regulation in the Netherlands in recent years. I was thrilled to receive an email from Dr. Wanda de Kanter today, a lung cancer specialist from the Netherlands Cancer Institute that I interviewed while researching the story. She sent along several comments from colleagues in the U.S., Australia, and Japan, all of whom are members of the International Association for Lung Cancer, praising the importance of the story and its lesson for other countries.

A long hiatus

Wow, it’s been a long time since I’ve posted anything on this site. I’m back!

Sometimes, I’ve discovered, we get so caught up in the business of living that we don’t have–or take–the time to reflect on what we’ve been doing. In the past couple of months, I’ve been working on a number of writing projects, doing some traveling–to Illinois to help out my parents while my dad underwent hip replacement surgery and to Philly to attend my nephew’s wedding–and keeping up with the day-to-day/hour-by-hour activities that keep me moving forward. A lot of that time, I find, is spent in the car, driving my girls to school, friends’ houses, softball games, church, parties. It’s a busy life.

Things have been so hectic that I wasn’t able to exchange Christmas gifts with Edwina until last week. We decided to meet at my office on a day I was teaching, and since there were no parking spots nearby, Edwina pulled up in front of my building and I ran out to her car.

It was Tuesday, January 12, the morning after the U of Alabama won the 2016 National Championship against Clemson. Folks in Alabama were pretty darn prideful that Tuesday.

Edwina drove up in a black car that’s on again, off again. She never knows whether the thing will start when she turns the key, but that day she got lucky. She’d added a Crimson Tide flag to the front of her car that morning and was beaming at me from the driver’s seat.

“Did you watch that game last night, Ms. Rayan?”

“I sure did.”

“That was excitin’,” she said, smiling and nodding her head.

It was good to see Edwina, pumped up after a victory.

Roll Tide.

Road Trip

Earlier this week, I gave a presentation for Breast Cancer Awareness Month at Drake Community and Technical College in Huntsville. I asked Edwina when I first received the invitation if she’d like to go along. She replied with a resounding “Yes!”

I decided to mix things up a bit during my talk by focusing on what breast cancer “awareness” might mean in 2015. At the beginning of the presentation I asked the audience how many of them were aware of breast cancer–what it is and some of the messages about the disease that had been communicated through the years–and hands shot up across the room. Since we’re pretty aware, I asked, what should we be talking about each October? What followed was an examination of the nuances of the disease and the many unknowns that persist.

The presentation went great. At the end, the crowd had even convinced Edwina to say a few words about her experiences with breast cancer and our evolving friendship.

Following questions, Denise Gaymon, the counsellor who had invited me to speak, thanked me on behalf of the college. She handed me a gift bag filled with Drake merchandise and also gave one to Edwina.

“We also want to thank Miss Edwina for taking the time to come along with Dr. Ryan to share her story,” Denise said as she handed the bag to Edwina. Edwina was smiling from ear to ear.

As we loaded up the car to return to Birmingham, stuffing in the pink balloons that Edwina has snagged on the way out the door, Edwina shared that she’d seen the gift bags when we’d walked into the building where I was slated to speak.

“I seen them bags,” she told me. “And I kept askin’ myself, ‘Why are there two gift bags? I bet one’s for Miss Rayan, but who’s that other one for?’ I couldn’t stop thinkin’ about that the whole time you talkin.”

Sure enough, the second bag was for Edwina. She couldn’t have been happier.

All the way to and from Huntsville, Edwina and I caught up on what we’ve been up to. It was wonderful to see her again. I’ve missed her big smile and perspective on the world.

Plus, we got to sing along to Michael Jackson as we made our way 100 miles to Huntsville and back again. Edwina and I tapped our feet and raised our voices, remembering just about every beat and lyric.

A celebration of writing

October 20 is National Day on Writing, a day committed to celebrating the power of writing in all its forms–both teaching and doing.

Members of the professional writing faculty, including Purdue alums Jaci Wells, Jeff Bacha, Bruce and me, along with our alum from Arizona, Chris Minnix, decided to set up a booth on the green and invite students to learn more about the day and our programs. We were a big hit!

Professional Writing Faculty: Bruce, Jaci, and Chris (standing); Jeff and me (sitting)

Professional Writing Faculty: Bruce, Jaci, and Chris (standing); Jeff and me (sitting)

To entice students to learn more about us, we set up a drawing for a $50 gift card from the campus bookstore. Students just had to write down their contact info and the best writing advice they’d ever been given. We ended up with more than 100 entries with some inspiring pieces of wisdom.

I made cookies and some of my mom’s special recipe party mix to pass out, too. The students loved it. Thanks, mom!

It was a great event, one we plan to build on next year. We’re hoping that more aspiring writers come our way after learning more about what we do and the many possibilities for those with writing chops.

Bodies matter, even in Alabama

I came across yet another story in the popular media about horrendous decision-making in Alabama: http://www.nytimes.com/2015/10/20/us/for-offenders-who-cant-pay-its-a-pint-of-blood-or-jail-time.html?emc=edit_th_20151020&nl=todaysheadlines&nlid=44005038&_r=0

A judge in Marion, Alabama, one of the areas I traveled to with David Jay to document the lives of breast cancer survivors lacking access to health insurance and oftentimes knowledge about their disease, is accused of exploiting the poor who enter his courtroom. Of which there are plenty. Marion is home to some of the poorest in the state, many of them African Americans.

As I read this story about people without the means to pay fines being told to donate blood and then bring a form back to the judge proving they’d donated for a credit towards their payment, I thought about the kinds of historical atrocities we discuss in a course I teach called Writing and Medicine. Among them is the Tuskegee Syphilis Experiment, which happened between the 30s and 70s (yes, it continued into the 70s) right down the road from Birmingham. Even though penicillin was being used to treat Syphilis by the late 30s, poor African American men were unknowingly refused treatment just to see what would happen to a body left to suffer from the disease. The results were horrific–excruciating pain, infertility, blindness.

While donating blood is certainly a good thing to do, there’s something wrong with making someone with limited means submit to a physical procedure to pay off a debt. Granted, giving blood isn’t as life changing as donating a kidney. Still, offering poor people who are already intimidated by the justice system the “option” of using their bodies as replacement commodities is wrong.

Come on, Alabama.