Matters of the heart

My brother is in St. Vincent’s Hospital in Jacksonville, Florida. He went to the ER suffering from chest pains and is now on the cardiac floor. A doctor called and left a message on our home phone on Joe’s behalf.

Assuming he makes his way out of the hospital, he’ll return either to rehab or the streets.

I am so very tired of the situation. Friends and family advise me to ignore him. He’s shown his true colors many, many times during the past 54 years. Why waste time and energy to engage him?

It’s hard not to agree with this advice.

There’s just one problem: Joe is out there. He exists. He is mentally ill and abusive and slings hurtful comments my way every chance he gets. But he’s also alive and pleading for help.

The Kushner’s

After my op-ed on survivor stories in the media lacking sufficient science came out in the LA Times, Lesley Kushner contacted me. Lesley is the daughter of Rose and Harvey Kushner, both of whom are well known in the breast cancer community for first bringing Rose’s story, and passion, to the conversation about breast cancer in the 1970s through writing and advocacy.

It was Rose who ushered in the two-stage surgical procedure for breast biopsy and mastectomy. Before Rose, women went into the operating room not knowing whether the lump in their breast was malignant or whether they would awake without a breast.

Lesley offered to talk to me further about her mom’s work, and said that her dad would be happy to share his memories as well. I took them up on their invitation last week.

I immediately connected with Harvey and Lesley’s passion for cancer advocacy and their belief that Rose, if alive today, would have her head in the research literature and the laboratory to uncover the most recent findings about what causes breast cancer and the myriad of approaches to treating it. She wouldn’t, they assured me, be caught up in the pink, running races and putting a happy face on the disease.

Our conversation was rich and provided me with plenty of directions for further writing. While I wish I could have met Rose, who sadly passed away before I was diagnosed with breast cancer in 1993, her example gives me faith in the power of words to make a difference.

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.