Scientists read, too

In its current issue, Science offers a list of summer reads for those of us who appreciate the discoveries and puzzles that preoccupy biologists, physicists, and so on: http://science.sciencemag.org/content/352/6290/1166.full

I have to admit that the selection Death on Earth looks particularly interesting to me. It must be due to my recent fascination with sustainable burials. And while I’m on the topic, I might as well add a link to another fun read from my friends at Mental Floss: http://www.msn.com/en-us/lifestyle/smart-living/17-behind-the-scenes-secrets-of-funeral-directors/ar-BBtNVat?li=BBnbcA

Advertisements

Checking boxes and eating oreos

An envelope from Social Security arrived in Edwina’s mailbox a couple of weeks ago. It contained a packet of forms for Edwina to fill out to reapply for disability, and Edwina’s first response was to be defensive.

“Miss Rayan, I got to have that disability check,” she insisted. “I can’t work like this,” pointing to her problems getting around and completing the most basic of tasks by herself–dressing, preparing meals, even sorting through her prescription medicines.

I assured Edwina that the forms reflect a part of the process to make sure that people receiving disability still need it. Anybody with an ounce of common sense would see that Edwina’s situation hasn’t changed. If anything, it’s worsened.

After trying to fill out the portions of the form that Edwina and her sister Linda couldn’t figure out on their own, I headed to Edwina’s with questions and a pen. And oreos, which she had texted me to say she needed “real bad.”

Page by page, we worked through the form. It was slow going.

“Okay, let’s start with doctors at Cooper Green during the past 12 months,” I said.

Bit by bit, Edwina pulled out memories of doctors she’d seen and tests they’d ordered. At the Coop, most of Edwina’s medical care is related to her diagnosis of breast cancer.

Then we turned to Princeton Hospital, which sits just a block away from Edwina’s apartment. It’s where Edwina goes when she’s facing a medical emergency, like when she couldn’t catch her breath and ended up with a diagnosis of COPD, and eventually, an oxygen machine.

I recorded her prescriptions from the bag of bottles she keeps by her side, throwing out those that had expired or she no longer took.

Finally, we got to the part of the questionnaire focused on Edwina’s day-to-day activities, from the time she gets up until she goes to bed at night.

“I get up and wash my face and get something to eat,” she told me. “Then, I do whatever needs doin’ around the house, washing some clothes maybe.”

Edwina occupies herself in the afternoon with her puzzle books and spending time with family. She ends the day with dinner, some tv, and a bath. Then, it’s off to bed.

We finished the form to the best of our combined ability, and I told Edwina that I would slip the large blue envelope into the mail.

Time for milk and oreos.

Invisible Threads

I’m in the middle of reading a fantastic memoir by Laura Schroff, An Invisible Thread. It’s a story that I came across quite randomly, but it couldn’t be more relevant to the circumstances in which I find myself.

Schroff’s book chronicles the relationship she developed with an 11-year-old panhandler named Maurice. She was a successful advertising executive, and he was the son of drug addicts condemned to live in a series of welfare buildings in NYC. Their relationship began on a busy city street where Maurice asked “Miss Laura” if she could spare some change. Instead, she took him to McDonald’s for a bite to eat and the two struck up a friendship.

The title refers to the notion that the people who come into our lives, oftentimes without any warning or for any clear reason, are actually tied to us in some less-evident way. Call it karma or the logic of the universe. Those who cross our paths are meant to, even though we may not always know why.

Immediately, I thought about Edwina. How I just happened to pick up a newsletter from my university mailbox that featured a story on a local church with several members who were both homeless and struggling with cancer. How Edwina was the first person I met from the community. How she had been diagnosed with the same type of cancer as me. How we seemed to “get” each other from the start, quickly sinking into a fast friendship.

As Schroff’s book so effectively reveals, an invisible thread might tie us together, but both parties have to work to maintain the bond and make it grow.

A haunting read

In preparation for a trip to England, I recently delved into a gothic ghost story set in the fictional town of Waringstoke, Simone St. James’ The Haunting of Molly Clare. I’m not usually a fan of scary tales–real life is frightful enough most of the time–but this was a fabulous read.

Molly Clare refuses to leave this world because she hasn’t yet finished setting straight the story of her life. I’ll leave the juicy details about what needs to be set straight from Molly’s past out of this post, but the story did get me thinking about the ways in which cancer and other crises get many of us side-tracked or at least awaken us to the crunch we face trying to fulfill the goals and adventures we have laid before us.

There are days when I look at my calendar and laugh at the ludicrous plethora of places and projects left to be done, all alongside the everyday tasks we uber-moms undertake. More often, I sigh or even cry at the prospect of the challenge. But when it comes down to it, there’s rarely an item that I want to mark off.

Having goals, knowing that there’s more living that lies ahead, keeps me moving forward. I don’t want to leave this world regretting that I didn’t at least try to get my story straight.

Judy Moody, Amy Namey

The world’s gone wacky. In the past week, Birmingham’s weather has fluctuated from the 40s to the 80s, and wicked thunderstorms and tornados have inched across the country.

As we sat in waiting last night, wondering if the storm would pass us by or come knocking on the front door, Helena began reading aloud from Judy Moody: Around the World in 8 1/2 Weeks. We muted the volume on the Weather Channel and tuned in to the story.

Judy Moody is skeptical when she first meets Amy Namey, a new kid at school who appears to be taking center-stage—as in the stage Judy typically occupies. “New best enemy” is how Judy characterizes Amy Namey, the kind of girl who isn’t afraid to say what she thinks, pry into classmates’ private worlds, or wear the same blue plaid skirt day after day with confidence. Amy Namey really gets under Judy’s third-grade skin.

But then, Amy Namey points out the incredible similarities between herself and Judy. Both have names that rhyme. Amy adores Nellie Bly, Daredevil Reporter, just like Judy dreams of Elizabeth Blackwell, First Woman Doctor. And both chew ABC gum. Got to be more than coincidence. Soon, Judy Moody and Amy Namey become the best of friends and members of the International My-Name-is-a-Poem Club.

Helena kept on reading, giggling at the silliest parts. The storm blew around Birmingham, and we trotted off to bed with the sounds of rhyming names echoing in our heads.

Henrietta

Students in my Writing and Medicine course are reading Rebecca Skloot’s phenomenal book The Immortal Life of Henrietta Lacks about an African American woman who unknowingly donated her cells to science following a biopsy for cervical cancer at Johns Hopkins in 1951. As a patient in the “colored ward,” Henrietta was at the time considered fortunate to be allowed in the facility at all and certainly lacked the privilege (documented or otherwise) of knowing that the additional cells were taken and then used for the advancement of science. But Henrietta’s cells weren’t just any cells. They reproduced at an astonishing rate, and HeLa (the official name given to the culture and its descendants) became some of the most influential cells in modern medicine.

As we delved into a complex discussion of biomedicine, humanity, the rights of an individual patient and her cells and the ethical demands on medical researchers, I found myself thinking about Edwina, Lisa, Roderick, Erwin and others who struggle with bodies affected by cancer at the same time they struggle against homelessness, hunger and all-around hopelessness.  While to my knowledge, my friends’ cells aren’t part of any current research studies, many of the settings in which Henrietta found herself resemble the stories one or more of my friends have shared with me. 

There’s the absence of information about a procedure they’ve undergone, or the absence of language and explanations they understand before signing a consent form. There’s the occasional lack of personal acknowledgement of them as patients–or perhaps more significantly, as human beings–when a doctor enters an examination room. There’s the dismissal of pain, in Edwina’s medical charts noted as “patient exhibits moderate discomfort” during ER visits when I happen to know she was in serious pain. There’s the consistent plot of parents, siblings and neighbors receiving a one-way trip to the doctor or hospital, never “goin’ if there wasn’t nothin wrong” as Edwina puts it. There’s the putting off of physical problems because there’s neither the time nor the money to do anything about it.

While the modern health care facility would never designate a “colored ward,” the truth is that the disenfranchised still enter and leave the medical system through the back door.