Breath, Blood, and Bone

Dec 092019
 

I have been absent awhile, dear friends, fighting a battle alongside my brave sister, a battle we could not win. After nine weeks of caretaking at my house, she passed away at the very end of November, the victim of a particularly acute form of pancreatic cancer.

What most people don’t know is that in the seven months before her diagnosis, I was working with her to find answers to her intractable pain, as she sought help and treatment.

Pancreatic cancer is insidious. If it were a person, you might describe it as smart, sneaky, and implacably cruel. At times it hides from chemo designed to eradicate it. Other times it manages to weaponize the most toxic elements of the treatment to use against the patient. While no one can say why it seems to be on the rise, most experts can tell you its high mortality rate owes to the near complete absence of symptoms until it’s too late. Over half the cases, when discovered, have already metastasized. My sister’s was one of them.

However, she did have one obvious glaring symptom right from the beginning. She awoke last March to excruciating pain, which she described with great specificity to at least eight doctors over the next six months. Pain is subjective and difficult to quantify, I will grant you. It’s also dismissed all too often, particularly when it comes to older female patients.

When traditional scans failed to turn up anything (and my sister asked about pancreatic cancer twice), she and I were essentially launched, unaided into a months-long search for an answer. She visited various specialists and tried a variety of solutions. By the time we assembled a new team of doctors, which took weeks, it was far too late. Maybe it always was.

My sister—my breath, my blood, my bone, my history, my sometimes sparring partner and always best friend—died more quickly than anyone could have imagined, notwithstanding my awkward but full-hearted attempts to act as caregiver, advocate, and nurse.

She was amazing. She, so courageous despite the pain. She breathed through it, argued with it, powered over it until that became impossible. She drove with me to Canada this summer because she wanted to. She had a small dog-sitting business and she honored her contracts until she couldn’t walk. She reached out to doctors and nurses and made friends and comforted friends until the drugs and the cancer began to steal her mind. I thought I knew her, but she astounded me.

I am in shock, needless to say. How fast she disappeared, my sister for life. I’ve tried not to be angry. That’s hard, but it will pass. I have previous experience with this. It feels awful and awfully familiar. Already the scab is forming that allows me to get through each day. Inside will take a longer. I wrote her obituary. Take a look if you feel like it.

I am so thankful for the outpouring of sympathy and the support of good friends and neighbors. I am gratified by the reaction of at least one doctor who wants to review her case to see if early detection was even possible. I would like to see future patients spared at least a modicum of the pain that so adversely affected my sister’s life for nine months.

I will find my way back to my fiction, friends. I owe that to her and to you. Watch this space; I hope in a month to begin sharing with you excerpts from my new Sam Tate book.

Thank you.

Not All Grief is Silent

Mar 082018
 

Parkland shooting teen survivorsYou see them after every tragedy: the husbands, wives, mothers, fathers, friends, and colleagues who have lived through what is an unimaginable event for most people. Somehow, instead of hiding away, they are out front, dealing with the inevitable mash of cameras, microphones, journalists, bloggers, well-wishers, and hangers-on. To add to their suffering, they must deal with entitled opinionistas, naysayers, trolls, and the genuinely ugly folks who feel compelled to issue threats via social media.

Yet they persevere, these physically and psychically injured people. Despite pain, loss, and soul-crushing grief that would lay most people low, they’ve appeared in public shortly after their experiences. They ask for understanding. More often than not, they advocate for change. A few might insist on assigning blame; far more insist on accountability.

Recently, a group of teenagers at Florida’s Parkland High School escaped death by yet another mass shooting. Now, some of them are calling on legislators to control, regulate, or ban the kinds of weapons favored by shooters at malls, rock concerts, and schools. These weapons–semi-automatic, self-loading, or whatever we choose to call them–are designed to inflict maximum damage in a minimum amount of time and they’ve been easy to procure by people who are crazy or just angry.

While the teens are widely supported, they’ve also encountered plenty of social media haters quick to accuse them of being either naïve children dazzled by the attention or opportunistic spot-light seekers backed by calculating adults. Some suggest that activism in the wake of tragedy is inappropriate. There are even those who suspect—or pretend to suspect—these poised and focused teens are paid actors.

How familiar that all sounds.

My husband died on 9/11. I spent a little time thrashing around my empty house. Social media didn’t really exist in 2001, just a few AOL chat rooms where eager participants engaged in conspiracy theories. When the journalists first called, I spoke about my husband. It helped, a little, but I remained at home and that was not a good place for me to be. My first steps at advocacy involved getting help for the families and also, to be honest, trying to articulate the painful peculiarity of our position: our grief was personal but also shared. We were in the public eye, like it or not. My voice, which had literally disappeared after my husband’s death, began to return. My will to live followed, although it returned far more slowly than I let on.

Finally, I screwed up the courage to express myself about the fallout from the attacks: a war with Iraq (a country that produced none of the hijackers), a deep division about how to treat Muslim-Americans, the ways in which 9/11, like so many tragedies before and since, became a shield for bad policy-making and fodder for the haters. Some of what I said put me at odds with other family members, or with talking heads, particularly on Fox News. The push-back hurt. I didn’t exactly shrug it off, but I didn’t stop, either.

The students who’ve chosen to be front and center impress me. I get why they’re speaking out. Because they’ve identified a single, absolutely relevant issue around which they can unite. Because they’re articulate, in the way smart, engaged teens can be. Because, yes, they want to make sense of an event that upended their young lives and ended the lives of their friends. Because the grief is too strong to lay quietly within them. They’re grieving, yes, but in their grief, they’ve become hyper-attuned to anyone who is trying to tell them how they should behave or how they should feel.

I can see it in their eyes and hear it in their voices. They push back against the critical, envious outsiders and against those who try to politicize their actions, as if safety and common sense were simply one side of an argument. No, they insist, you can’t have it both ways. You can’t call us children and still fail to protect us. You can’t call us opportunists and then fail to listen to what we say. You can’t take our grief, our pain, and our resolve and use it to further your own agenda. We call that b.s.

I call it hope.

Competitive Suffering

Nov 032017
 

 

Back when I was writing about my experience as a grieving widow in the public eye, I described a phenomenon called the “circles of affectedness.” I noted how after 9/11, many of us organized ourselves (or were herded) into groups or categories according to how directly we were impacted by the terrorist attack. “The closer to 9/11 one was, either by geography or personal loss,” I wrote, “the more special one seemed to become.” At the same time, I picked up on a perhaps unconscious competition taking place among the survivors and family members, egged on by a media machine hell-bent on finding and promoting the most tear-jerking stories possible. Who was most affected, a widow with small children, a mother who’d lost two sons?

This competition offended me. I hurt and in my grief, I sometimes imagined no one could understand how deeply. But that meant I couldn’t fully understand how someone else might grieve either — a survivor, an observer, a citizen. Who compares levels of sorrow anyway?

Humans, it would seem.

Americans in particular are all about comparing and contrasting the good, the bad, and anything in between. Size, shape, age, education, financial status/situation, upbringing, gender (traditional or atypical), achievement, social media presence, your mom’s meatloaf recipe must be measured: You name it and we will hold it up next to something similar and assess its comparative (and often highly subjective) value.

Product promotion is dependent on comparison. Advertising routinely points out the flaws in the competition along with the benefits of the promoted product. Entertainment pitches for books, TV scripts and film concepts high and low often reference what succeeded before but with a twist (“like ‘The Good Wife’ but set in a hospital”). More and more publishers and agents ask authors to suggest five titles their new book most resembles.

The man in the White House thrives on comparison. He appears to favor superlatives; whatever he references is the “biggest,” “tallest,” “smartest,” “highest,” “most,” or, “worst,” or, conversely, the “meanest,” “tiniest” or “least.” It doesn’t matter whether his frame of reference is a policy, a television show, an individual, or an insult, and it never matters whether his claim is true. This is the new reality in which we find ourselves.

The great job, the superior child, the perfect body and the ideal marriage may be media inventions, but they don’t keep us from staring at our friend’s Instagram pictures and wondering why our lives are so dull? We are doomed to fall short.

Which brings me back to comparisons of suffering.

It seems most people who share their stories of despair are looking to instruct or connect or reach out to others going through something similar. Some seek to gather strength in shared experiences. The #MeToo hashtag is meant to demonstrate how wide-reaching harassment is and how easily women and men have accepted such behavior as acceptable. In fact, many women I know are hesitant to share their stories because they aren’t as horrendous as someone else’s. “I was followed but I wasn’t attacked.” “Catcalls aren’t as bad as groping.” Here too, the need to compare affects what we admit, even to ourselves.

Some who post their stories seek sympathy or attention. Some want advice; others really don’t. Still others seek self-expression or catharsis. For some, typing the words on a screen seems easier and more immediate than talking to a person, assuming there’s anyone to talk with. For others, posting is the only option. Let’s face it; we’re confronting a retreating government and reduced support in real life. Where can we turn except to our virtual community?

Social media allows us to share our sorrows as well as our triumphs. In that respect, it can provide a valuable service. But misfortune doesn’t need to be a competition any more than accomplishment does. It’s not about who does it best or feels it most. It’s about our shared humanity.

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