Crying wolf

My brother’s phone calls have continued during the past few days, including a call yesterday afternoon  from a passerby outside a Dunkin Donuts in Tallahassee, Florida who called on Joe’s behalf to say that he is desperate–broke, cold, and in need of immediate help–and a call around 3:30 a.m. this morning from Joe himself. In one his messages, it sounded like Joe had booked a bus ticket to Birmingham and looked forward to seeing us soon.

“I’m on my way, Sis!” he announced on my answering machine, detailing the places where the bus route would make connections. Some of those stops would take him to Louisiana en route to Birmingham, which didn’t seem a likely itinerary.

This morning, another left message reported different plans for the day. Something about heading to the batting cages of a baseball field and him not feeling a bit sorry for anything he’s supposedly done.

As I grappled with Joe’s onslaught of messages, I realized that I found myself caught up in two perspectives on my brother.

On the one hand, I think of Joe’s past as a master manipulator, someone who skillfully changes a story until the listener begins to question his or her understanding of the situation. This Joe, who’s been a presence in my life since I was about 5 years old, left me fed up and distrustful.

But the Joe who calls now, and who has reached out off and on since 2012 when he showed up on my doorstep the night before Thanksgiving exhibiting signs of a stroke, is genuinely, unmistakably mentally ill.

Celia was able to put into words what I couldn’t seem to explain to my husband.

“It’s kind of like the boy who cried wolf, Mom,” she said. “For a long time, Uncle Joe said he needed help but he really just needed to get his life together. Now, he really needs help, but nobody believes him anymore.”

She’s absolutely right.

I wish the answer to dealing with the situation could be summed up so succinctly.

Answers and more questions . . .

After a long wait, I’ve received a full report from Gene Dx, the lab that conducted my genetic tests. While my genetic counselor at UAB called me a couple of weeks ago with preliminary findings, she encouraged me to wait on the completed report for a better understanding of what was discovered.

Turns out, I don’t test positive for either BRCA1 or BRCA2, or most of the other 18 markers identifiable in the particular panel used for testing my DNA. The exception is a variant of (currently) uncertain significance on the MUTYH gene. In other words, my results fall into the category of “there’s a mutation, but we’re not sure what it means.” Great.

To be fair, a variant on MUTYH isn’t completely unheard of. Scientists know that it an inherited autosomal recessive gene, so mutations in both copies of the gene are needed to significantly increase cancer risk. On that front, I guess I’m lucky that a variant of only one copy appeared.

Some studies report an associated increase in colon polyps with this particular mutation, up to 100+ polyps co-occurring. Others suggest an increase in other cancer types, including breast and colon. Another report I read suggests a link to skin cancer as well. There are lots of speculative and tentative claims about what a variant of MUTYH might or might not mean.

The upshot? The geneticist who prepared the report indicates that because my two bouts with breast cancer could be linked to the MUTYH finding or completely unrelated, I and my offspring should be diligent in screening for cancer given our family history.

Yep, that was the plan all along.

American Pie

On my way out the door to pick up my youngest from softball practice, the phone rang. While I typically check to see who’s on the other end, this time I just quickly picked it up.

It was my brother. Out of jail. Claiming that he’s feeling fine and that there never was a good reason for deputies to arrest him in the first place (forget the concealed weapon they confiscated). Out of money, with no more than $4 in his pocket. Worried about freezing to death since he doesn’t own a coat.

Before I could tell him that he needed to find a shelter, a woman, whose phone Joe was apparently borrowing for his phone call, told him that he needed to hang up. I beat him to it.

It’s hard to describe the pit in my stomach that coincides with news from Joe. He’s sad, and scary, and so damn manipulative.

I have compassion and try to show it freely to the people in my life, like my spouse and kids, my parents, my friends, and especially Edwina, who’s had a raw deal most of her days.

But Joe brings out the skeptic in me, the little girl who gradually figured out that Joe never said or did anything truthful. He always had an agenda, usually one that would hurt somebody.

I locked the door and jumped in the car to head to the softball field.

In an effort to take my mind off the conversation, I turned on the radio and heard the opening lines of American Pie. The song was big when it was released in 1971 and everybody I knew quickly learned the lyrics by heart. Of course, most of us didn’t understand what they meant–the loss of rock and roll in the 50s and early 60s and the feelings of lament that those of the current generation felt–but it didn’t matter.

Joe loved American Pie and the entire album of Don McLean’s more than anybody else I knew. He’d play it over and over. He had figured out (somehow) when different radio stations in the area were going to play the title song and savored the moment when he could change the dial and hear it across the airways even though he could have listened to it right on his own record player whenever he wanted. I guess the song on the radio seemed more spontaneous and real.

Looking back, there are genuinely some moments with my brother that make me smile. They come back to me when a song we used to listen to together comes on the radio or I watch a rerun of a TV show that he and I used to sit down to after we climbed off the school bus. Sometimes it’s something crazy that I hear someone say that I know would have made Joe shake his head and laugh.

Day to day, though, I feel nothing but sadness and hurt when Joe crosses my mind. And that’s the worst memory of all to keep tucked inside.

Both Worlds

An excellent op-ed appeared in yesterday’s Washington Post:

Author Loretta Jackson-Hayes argues against the traditional dichotomy opposing STEM fields and the liberal arts, as she claims that divorcing one worldview from the other could have disastrous effects. Jackson-Hayes insists that the best scientists–whether they become physicians, work in academic or commercial labs, or serve as hands-on engineers in large corporate settings–bring the sort of critical thinking and writing skills learned in the liberal arts to the bench. One particularly poignant paragraph draws on the example of leading thinkers Leonardo da Vinci and Steve Jobs:

“Our culture has drawn an artificial line between art and science, one that did not exist for innovators like Leonardo da Vinci and Steve Jobs. Leonardo’s curiosity and passion for painting, writing, engineering and biology helped him triumph in both art and science; his study of anatomy and dissections of corpses enabled his incredible drawings of the human figure. When introducing the iPad 2, Jobs, who dropped out of college but continued to audit calligraphy classes, declared: ‘It’s in Apple’s DNA that technology alone is not enough — it’s technology married with liberal arts, married with the humanities, that yields us the result that makes our heart sing.'”

I agree wholeheartedly with the argument Jackson-Hayes makes. When I teach students from the Science and Technology Honors Program each semester, I’m stuck by the spark of creativity and insight that comes from embracing both worlds.

Alabama in the news, again

During the past week, Alabama has been front and center in the news. Again.

The majority of media attention has focused on the refusal of far too many judges in the state to issue marriage licenses to gay couples, despite a federal judge’s decision that a ban on same-sex marriage in Alabama (along with bans in other states) is unconstitutional. Alabama Supreme Court Justice Roy Moore disagreed with the federal judge’s decision and advised judges throughout the state not to go along with it.

Once again, Alabama goes its own way. It’s an embarrassment and a message to the world that “we don’t do things like the rest of y’all.”

I came across another story this morning that made me even sadder:

In a bedroom community of Huntsville, Alabama, a city which is known for being progressive, especially in the spheres of science and technology, an elderly Indian man was stopped and abused by police. The reason? He looked different and didn’t speak English.

I promise that not all of us in Alabama are so narrow-minded.

Return to Princeton

I received a text message from Edwina yesterday that seemed more urgent than usual.

“Call me, Miss Rayan. It’s real important.”

I returned her phone call and found Edwina, once again, in Princeton Hospital–the facility she goes to when she’s experiencing an emergency and for more routine visits now that Cooper Green is in a constant state of uncertainty. Edwina told me recently that she never knows whether her doctors will be at Cooper Green when she goes for an appointment, or if the floor they practice on will even be open. Such is the reality for a county hospital operating in the red for close to four years.

Edwina started having trouble breathing on Tuesday of last week, and she finally had Tyrone take her to Princeton on Thursday. At first, she insisted on going home after seeing the doctor.

“I went home for an hour, and I couldn’t breathe at all,” Edwina said. “I said, ‘Tyrone, you better take me back over there.'”

So, since Thursday, Edwina has been in a hospital bed on the fifth floor. According to the doctors, or what Edwina reports comes from the doctors, she has fluid on her lungs, COPD, and blood clots. It’s similar to what sent her to Princeton a few months ago, and what often sends her to the ER in-between. Especially the struggle to breathe.

“I have cardiac arrest, too,” she informed me.

“You had cardiac arrest? When?!”

“You know, just my heart don’t work right, don’t beat the right way,” Edwina explained. “That scares me, Miss Rayan.”

I assured Edwina that all will be well, but I also told her that she has to quit smoking.

“I’ll help you any way I can,” I said. “We need to throw out your ashtrays, not let Tyrone or Joe-Joe or anybody smoke in the house.”

Edwina nodded. “I’m gonna do whatever they tell me this time, for sure. I’m gonna get me some of these patches [pointing to one freshly stuck to her upper arm this morning].”

She also told me that she’s going to put a “No Smoking Allowed” sign on her apartment door “so nobody come in smoking.”

I want to believe that Edwina will kick the habit and buy herself a few more years, ideally, years during which she’ll be able to breathe more easily. But I doubt that a 31-year habit can be broken so swiftly, especially when she lacks many of the tools to tackle it.

Edwina started to drift off from the medicine she’s taking. As I was getting ready to head out, her neighbor from across the hall, who’s roughly our age (early 50s) and who works part-time in the cafeteria at Princeton, stopped in.

“You know, me and her are the old folks in our building now,” Edwina said. “All the others, they gone.”

Edwina started to name off the neighbors she’d lost in the past year: “them old men, Mama, . . . ”

I have to wonder how long the lives are of most people who inhabit Edwina’s building, or the neighborhood on West end. From the time I’ve spent with Edwina, I have a feeling that their lives are far too short.

White noise

I am counting down the few remaining days until February. I’m in desperate need of a restart.

January has been a month of ups and downs.

One up: My brother is safely behind bars until late February when he goes to court. While there’s a chance that he’ll be released, the evidence is stacked high against him this time around. I’m praying that he’ll be kept off the streets and out of our lives for a while.

Also, one of the medical tests I underwent this month came back perfectly normal. Anything considered “normal” in the medical sphere delights me.

On to the downs.

I am still waiting for the results of my genetic testing for BRCA1, BRCA2, and a host of other potential mutations that might help to explain my two encounters with breast cancer. I find myself playing out different scenarios in my head depending on what I learn from the test. What I’ll tell my girls, and how they, and I, will move forward with new knowledge about my family’s genes.

My friend Suzanne likens my need for answers and the accompanying inability to focus intently on the projects I am undertaking during my sabbatical to “background programs,” those programs that lie open in wait behind the particular computer screen you’re using. While you can’t necessarily see the other windows, you know they’re there and will have to be closed before shutting down your PC for the day.

I like her comparison, but I’d have to add some noise–some kind of beeping or music or static that keeps those open windows front and center. White noise, just enough to prevent me from ignoring them until it’s time to turn off my brain for the night.