Nightmares

It’s funny how your mind works when you have a little down time.

The girls and I were enjoying a trip to Panama City Beach, filling our days with waves and sand, a little mini golf, time at the pier, and travels to nearby Seaside and Rosemary Beach. Maybe because we jam-packed our vacation with fun, I found myself experiencing bizarre dreams when my head finally hit the pillow at night.

One nightmare in particular stood out, and I couldn’t shake it. Finally, it dawned on me that this unpleasant dream carried a taint of truth.

In my dream, I uncovered a family secret that my maternal grandmother’s family had been slave owners. As the dream played out, I struggled to put this history into place. I tried to explain to people who, after learning this secret, asked how I could possibly claim to be Edwina’s friend and advocate when I came from such a prejudiced past.

I awoke shaking off the absurdity of the nightmare. But then, a reality that I often push to the side slid in to take its place.

My grandmother, and her brothers and sisters, were racist in the extreme. All my life, I heard them utter slurs that even at a young age seemed shameful to me. My mom used to say that that’s the way my grandmother and her siblings were raised. Fortunately, my parents offered a very different example, always teaching me to treat people with respect.

When I was old enough to begin dating, my grandmother would tell me not to ever bother coming around with “any boyfriends who were N______.” All black people were the same in her book, and by same, I mean all of the worst assumptions that can be made about a person.

As we drove home from the beach and the girls slept in the car, I filled the silence with thoughts about the memories behind my nightmare. I wondered why I’d never thought about this side of my grandmother in all the time I’ve known Edwina, Lumon, Roderick, Lisa and others.

I guess I’ve been focused on the friends I’ve met and not on the color of their skin.

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Health care woes

Cooper Green, Jefferson County’s Hospital offering the only care for those in this part of the country lacking the income and resources to seek private care, is struggling to keep its head above water. The implications for folks like Edwina are huge.

The two departments being slated for closure are oncology (Clinic E, where I’ve spent a good many days with Edwina, Lisa, Charles, and Roderick) and ob/gyn. Since these are apparently the most expensive departments to run, the hospital is being forced by county commissioners to shut them down or go without any backing whatsoever.

There’s a lot of blame going back and forth in the local media, some saying that the hospital is mismanaged and others saying the hospital was doing ok until government folks got too far into administrators’ business. Regardless of where to point the finger, though, the outcome is the same. People needing cancer care, or prenatal care, are going to be out of luck unless they can find a way to get help elsewhere. And while Cooper Green is working hard to place its current oncology patients with facilities throughout the city, chances are that many patients who would have gone to Cooper Green now won’t seek any sort of care. Folks simply slip through the cracks.

I’ve been working with one of the key people at Cooper Green to hold the next Street Smarts event there. The program would be the same as when we held it at Church of the Reconciler, but we were hoping to offer participants this time around an opportunity to register as a patient at the facility and an optional breast exam by a doctor or nurse. The fate of those homeless women we might have reached is now uncertain.

I’ll be publishing an op-ed in The Birmingham News a week from today comparing the situation at Cooper Green with the tiered health care system in Nepal. Whether we want to admit it or not, care in America also operates according to tiers–the more a patient has money and insurance-wise, the better the care.

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.

snapshots from a life

A snapshot I took of Lumon after our first and last meeting

Today, I went to the funeral of Lumon Layton, Jr., a man I met just once close to two years ago. He made an impression.

When I was interviewing cancer survivors for the “Homeless With Cancer” story, Lumon strolled into my life briefly out of the blue. He’d come with a friend that he met at Cooper Green–Roderick Turner. He didn’t know Roderick all that well, but when Roderick told Lumon that he was planning to go to Church of the Reconciler for breakfast and that the people there were “real nice,” Lumon decided to check it out.

My exchange with Lumon must have gone on for close to two hours. We talked about his life–the death of both of his parents and a brother, his own son’s incarceration, his daughter’s generosity in letting him stay under her roof, his grandchildren.

Lumon had worked for years for a series of construction companies, helping to build some of the government and office buildings in downtown Birmingham. All that work on asbestos-laced walls and ceilings–most completed without any kind of mask or protective gear–eventually caused mesothelioma. He told me that back then, nobody ever told him or the other workers that what they were doing could be harmful. He wasn’t sure his bosses knew at the time, but “they sure did,” Lumon said, when he and several others were “called in to testify that they were sick” and hadn’t been told to follow any safeguards, and “wasn’t given any equipment anyway.”

Lumon’s light green eyes lit up when he talked about his family and the kind of life he’d had. He grinned as he admitted that it hadn’t all been something to be proud of, and he was sorry about some of the choices he’d made. He gripped my hands and wept when he described how one day, he just couldn’t ride his bike or mow the lawn the way he used to. That’s when his daughter told him, “Daddy, there’s somethin’ wrong. We’ve got to get you to the doctor.”

I came across Lumon’s picture in the newspaper last Friday quite by chance. Ever since I started working with the homeless with cancer, I check the obituaries to see if I recognize anyone. Too often their deaths, like their lives, escape under the radar. I’ve never believed in fate, but I was in fact thinking about Lumon when I suddenly saw his face. And immediately, I thought about the picture I’d taken of him some time ago.

When I went to Roderick’s funeral service a few weeks ago, I was disturbed by the picture on the front of the program handed out to guests who had come to remember Roderick’s life and pay their respects. The photo had been taken after Roderick was brought to the funeral home, his eyes closed and smoke-like effects added around his face. This last look at Roderick was upsetting: it didn’t show Roderick in action, funny and animated as he often was in life, and there were other photos out there–those taken by Rachael, Sylvia, and me. Fortunately, one picture taken by Rachael was placed at the front by the urn. But it was the late Roderick who graced the cover of the bulletin and who would be carried out to the streets.

Friday night after reading about the service scheduled for today, I sifted through my photos and found one of Lumon. I made several copies and sealed them in an envelope to give to his daughter, Sherita.

When I got to the funeral, I realized that I needn’t have worried that Lumon’s family had no pictures. The program was filled with snapshots from his life, picturing him staring out with those clear, green eyes. Now there’s one more.

A busy road to travel

It’s been a crazy, busy, wonderful summer, and for the first time in a long time, I actually feel ready to head back to the classroom tomorrow. So often, the summer ends with me feeling in a bit of a panic, disappointed that I didn’t accomplish more–a few more pages of text, another drawer cleaned, another trip to the pool with the girls, more materials printed out and ready for the semester.

It’s not that I don’t have a pile of tasks that I could’ve, should’ve accomplished. It’s more that I feel good about where I am in the process. I’m enjoying the journey–the book I’m working on about my experiences with Edwina, the upcoming conferences I’m planning to attend, the much-needed bathroom remodel that’s really, truly going to happen! To some, the idea that I’m happy in the place I’m currently occupying might not seem like a big deal, but for a destination junkie like me, it’s huge!

One bright moment today involved a press release issued by the AACR about my Clarion Award: http://www.aacr.org/home/public–media/aacr-in-the-news.aspx?d=2432

When I read the release, I was most touched by the comment from Margaret Foti, CEO of the AACR, that “Homeless with Cancer” “shows heart.”  I’ve been thinking that maybe Foti’s words have something to do with the general sense of contentment I’m experiencing. Through my friendship with Edwina, Lisa, Roderick, and the others whose lives with cancer have become intertwined with my own, I’m allowing myself to feel life as it is right now.

Making a Difference

I learned a week or so ago that “Homeless with Cancer” was selected for a Clarion Award in the magazines category. Earlier today, the official list of winners was posted on the Clarion site: http://www.womcom.org/awards/Clarion2011.asp

I’m so thrilled to receive this honor from the Association for Women in Communications, a national organization that recognizes communicators in a variety of media, from magazines and newspapers to television to advertising and corporate publications. I’m especially excited by the caliber of the other winners of Clarions this year (writers, photographers, and editors from Ladies’ Home Journal, Marie Claire, Wall Street Journal, Sports Illustrated, HBO, and Newsweek among others).

When the story was first published in CR  in Fall 2010, I started to wonder if anyone was going to acknowledge the community I’d written about. The AACR’s media relations team had crafted a stellar promotional package about the article and the grass roots efforts by many to make homeless cancer survivors’ lives better, but nobody bit. Then, suddenly, things started happening.

CBS taped a story about Edwina and me (to be aired, they tell me, quite soon). The local Komen affiliate stepped in to support Street Smarts, as did volunteers from all over the city–folks from churches, clubs, my own classroom. CNN thought the program was worth a look, so they shot and aired a segment that I’ve not seen(!), but others have and indicated interest in extending the program to their cities. I have to think that Edwina and Lisa and the others I’ve come to know and who have enriched my life immeasurably have touched others too (even those who tried, hard, to forget about people who suffer from cancer out on the streets).

A couple of weeks ago, Roderick Turner, whose picture is shown on one of the title pages to the story in CR passed away from colon cancer. He fought for life up to the very end, and I wish I could have told him that his story is changing how others view people with cancer who don’t have the good fortune to live in a room of their own or know where their next meal is coming from.

He’s made a difference. I’m hoping he knew.