Believing Shannon

Cancer is pretty much all downside, delivering devastating blows to the mind-body-spirit trifecta, but the far and away worst damage comes when friends die. I’ve lost people diagnosed before me, after me, those younger and older than me, people who sat with me in the treatment suite and those I never met face to face. I’ve cried, I’ve raged, I’ve shaken my first at the empty sky.

This one is different.

You can read the official story here. This is mine. 

Shannon’s dad and my dad worked together at the Cincinnati Enquirer. They were close friends, Shannon and I were the same age so I heard about her through most of my childhood. We’d spent some time together as teenagers in the 1980s but our connection remained once removed – we were the daughters of good friends with big personalities.

My father died in 1992 when I was in my 20s, I met my future husband shortly after and we created a family who only knew of younger days through the stories I chose to share. There’s a freedom that comes with escaping the full weight of the past but also an unmoored feeling of belonging nowhere.

In the early 2000s, I enrolled my preschool-aged daughter in Sunday School at my parish. One day at pick-up, a smiling face came up to me and said, “Do you remember me?”

Crap.

I suck at that game and always end up feeling like a chump. Almost always.

This face I knew.

Shannon had been looking for me because she’d seen my daughter weeks before and knew that girl had to be my daughter.

That’s ninja-level recognition skills.

Our oldest kids were the same age and started school together in the same first grade classroom. We got to know each other as adults and parents but our shared history felt like family to me. Like those fading roots.

The summer before our kids started second grade she called me. They’d found cancer in a Fallopian Tube. No worries, she told me. This was a speed bump. Docs gave her an 87% survival rate and she was going to have a little chemotherapy to make sure.

I knew zilcho about cancer then. But 87%, I thought. That’s a B and she says she’s going to be fine. So I believed her and by wintertime she hosted a jewelry making party to thank everyone for their support. Her hair was growing back; she was all smiles and proclaiming life was good.

I believed her.

The summer before third grade started I called her. This time I had the cancer and I wasn’t nearly as sunny. I got a 67% survival rate diagnosis. That’s an F. But she told me not to worry – those numbers include all of the old, fat, and unhealthy people too. It was one of my first laughs at cancer, but her husband had been transferred to Houston. They were going to move before I even had my first treatment.

Before they left, she came over to offer herself as proof to my children. The hair grows back, she said. Look at me, she said, I’m fine. Your mom will be fine too.

They believed her. I did too.

Things weren’t always so fine for Shannon in Houston. What they’d found in Cincinnati was actually ovarian cancer, a nasty and persistent disease. She learned she carried the pernicious BRCA mutation. The ovarian cancer returned, spread, and eventually outsmarted all conventional and clinical trial medications. She engaged hospice this January and died on Valentine’s Day, nine years after the original diagnosis.

I don’t have words to elucidate the stark facts. I know there is immeasurable pain today in her close-knit family. Her sister, her parents, her niece, her nephew, and of course her children.

But she told me before she died that she was at peace.

I believe her.

She hoped her final days would be peaceful ones too. I told her I was sure they would be.

I hope she believed me too.

Why We Can’t All Get Along

Scenario 1:

“It’s time to put aside our differences and come together as a nation,” say people in power.

Translation: Sit down and behave. Don’t give us any trouble.

Nah, nah, nah. While my hopes were crushed in November, my memory wasn’t magically erased. I remember how y’all acted from 2008 until November 7, 2016. I remember the bloomers and tri-cornered hats. I remember all the names the first family was called. The now-POTUS was the face of the birther movement. ‘Nuff said.

Scenario 2:

“The Democrats haven’t learned the lesson of the election,” say the pundits and gloaters.

Nay! We learned. Our neighbors either endorsed Trump’s bluster and bravado or didn’t think it was significant enough to disqualify him. Whether a person voted for him because of his outrageousness or despite it is a distinction without a difference.

I used to believe that we all wanted the same thing, we just believed there were different ways to go about it. I’m not so sure anymore. I suppose if you dig deep enough, the common urge toward happiness is there, but move beyond that very base level and it seems I’ve been wasting my time. I’m afraid I’ve done little more than soothe myself by clinging to the belief that we share the same core values.

Another lesson learned? America, which markets itself as a democracy, actually has a system that can put the minority party in power. Folks find that unsettling. There’s nothing childish or spoiled bratty about it. It’s an affront to our learned sense of what this country means.

Scenario 3:

When toddlers are first becoming socialized, it’s typical to see them playing side by side instead of engaging each other. They’re doing their own thing in the same vicinity. As they mature they start playing together – learning to give and take, to win and lose, to negotiate rules.

 

These cries to “get along” seem to be cries for thicker coats of veneer. We don’t want harmony, we want the appearance of harmony. People are demanding politeness. One lesson I learned during the Obama administration is that politeness has its limits.

While we go about pretending everything is alright, resentments burrow and grow in the fetid darkness of hushed silence and rot a person from the inside out like a blight. We’re just placing a thicker, penetration-proof coating on our comfortable bubbles. Thick bubbles let us take the easy way out – creating two-dimensional caricatures out of people who disagree with us and demonizing the dreaded other.

What fixes this more difficult and uncomfortable than plastered on smiles. Deep listening, engagement, “love with no need to pre-empt grievance.

We can continue to live like toddlers play – side by side. Or we can begin the real work of healing. It’s is risky and hard and scary and guaranteed to change you.

If you want to make this country great, take the risk to change yourself. If you want the country to stay on its current path stay in your poo-flinging corner. Call people who disagree names that strip them of their humanity, insist that they sit down and shut up, blame them when things don’t go well.

If you’re ready to be the change, here’s a familiar place to start. It’s out of my usual wheelhouse, but it’s a prayer I remember well from parochial school youth. Whether you believe in the same dogma of the writer or not, I challenge you to stay open to the deeper, unifying truth.

Peace Prayer of Saint Francis

Lord, make me an instrument of your peace:
where there is hatred, let me sow love;
where there is injury, pardon;
where there is doubt, faith;
where there is despair, hope;
where there is darkness, light;
where there is sadness, joy.

O divine Master, grant that I may not so much seek
to be consoled as to console,
to be understood as to understand,
to be loved as to love.
For it is in giving that we receive,
it is in pardoning that we are pardoned,
and it is in dying that we are born to eternal life.
Amen.

Passenger #24

My grandparents on my father’s side were Irish immigrants. I don’t remember them talking about why they left but I know people don’t just pack up and leave everything they know if their life is hunky dory.

Thanks to the magic of the internet and many hours of work, I have located some of my grandfather’s immigration records. All this comes from the Liberty Ellis Foundation.

He departed from Queenstown (now Cobh) on April 9, 1911 and arrived at Ellis Island on April 16th. The ship’s manifest says he’s 20 years old, but I don’t think that’s accurate. Other records show he was born in 1893 and I know his birthday was August 11th, so he was 17. He sailed on the Laurentic, a ship owned by the White Star Line.

Here is the ship’s manifest with my notes.

Page 1: The headers

Page 2: Passenger 24 – William Forde of Tuam, Ireland. Father’s name is William, final destination is Cincinnatti (sic). It looks like he was traveling with Passenger 23, John Monahan, also from Tuam and also going to Cincinnati. I’ve confirmed that they were neighbors in an older Irish census. By the way, one of the most surprising parts of my research is that our last name was spelled Forde. By the time my dad was born in 1926, it was Ford and I have no idea why.

Page 4: The second set of headers. Please note the top line. He was a steerage passenger. You’ve seen Titanic, right? They were the people crammed into rooms in between the regular decks. They did most of the dying when the Titanic sank in 1912. I have read that the White Star Line tried to clean up these third class accommodations to attract immigrants and have no first hand accounts of the conditions on the Laurentic. But they were, by definition, not first class passengers.

Page 5: He paid for the ticket himself. He had $15 with him. His aunt, Mrs. W.A. Herne (her name was actually Herron) lived at 451 E 5th Street in Cincinnati. He was 5’8″ (also a stretch, I think) and claimed to be neither a polygamist nor an anarchist. The log indicates he was not crippled and was in good physical and mental health. Apparently that was the extreme vetting of the day.

I think remembering this matters, even if my grandparents wanted to put it behind them. My best guess is that they left Ireland in search of opportunity, prosperity, and the chance to build a better life. Living with the recent memory of the Irish genocide probably didn’t help them want to stick around either.

In America, the Irish were discriminated against and caricatured as shiftless, roving gangs of violent drunks. Catholics were distrusted because of their mysterious and misunderstood allegiance to a foreign religious leader. An entire political party formed out of the fear.

In 2017, that sounds ridiculous, just as our current Muslim hysteria will sound to the future.

Nativism has always been with us; we bury its history because of shame and our silence emboldens it for a new generation.

More on The Gene

For my first post on Siddhartha Mukherjee’s The Gene, click here.

A sweeping tome such as The Gene deserves more than one post.

One of the most enlightening parts of the book is Mukherjee’s way of defining illness – not as an objective measurement but as a mismatch between a person and his or her environment. Something becomes an illness when it prevents the patient from reaching his or her desired goals. As usual, context matters.

ADHD, he cites as an example, would not have hindered our hunter/gatherer forbears. It might have even helped them navigate risky, hostile, and unpredictable environments. But today, we expect our children to sit still for long stretches of time in the classroom. Since ADHD can be disruptive to our current systems, we have come up with ways to diagnose and treat it.

I think the biggest elephant in the room about our increasing genetic knowledge is the answer to a deceptively simple question – “Ok. Now what?” Akin to the early detection conundrum in breast cancer, precise test results aren’t a solution. Although we detect cancers early, we don’t know which cancers are indolent and which will become deadly. Most importantly, if the cancer does metastasize, we can’t cure it. Likewise with the BRCA testing – we can tell a person of the increased likelihood of breast or ovarian cancer but we can’t say what kind, how lethal, or when it will happen. Indeed, there is a chance that the person carrying the mutation will never develop cancer. Risk reduction for these people often includes the complete removal of healthy breasts and ovaries. How valuable is the early detection if the Ok. Now what? options are limited?

I have a friend whose son has Down Syndrome, meaning he carries an extra copy of a chromosome. As of today, this is immutable. Prenatal tests can diagnose it but cannot predict what the eventual child’s life would be like or what his/her capabilities will be. If a pregnant woman finds out her fetus will be born with Down Syndrome her only remedy is abortion.

My friend is the fiercest Mama Bear I know and her son is thriving in a traditional school setting. It hasn’t always been easy but spending time with this special family is bound to make you a better person. Over the years I’ve asked myself why anyone would consider this boy to be ill or disabled. It seems just as reasonable to think that Down Syndrome might be a variation, like blue eyes, and not something that needs to be fixed or eliminated.

(NOTE WELL – I am not here to debate morality. I believe in a woman’s absolute right to make her own decisions. My bubble doesn’t include having walked in those shoes so I don’t pass judgment.)

The ancient Greeks passed along a multitude of valuable ideas and systems that shape our society such as a groundbreaking model of self-rule, the Olympics, and didacticism. Unfortunately, they also saddled us with this notion that there are objectively perfect forms. Of course if we believe perfection is a single, achievable outcome that exists out there somewhere, we’re going to chase it like Gatsby and his green light.

As discussed before, that can lead to downright evil outcomes like the Holocaust. Our ideas of what perfect means change over time, limited by both cultural norms and our inability to recognize the shortcomings of our own bubbles. Plato, the guy who talked about the perfectibility of forms, considered tallness to be perfect. Another philosopher in another society could come to the opposite conclusion. Since perfection is a matter of taste rather than a measurable objective, it is subject to all sorts of winds of change.

Given the unacknowledged limitations of our own bubble, it seems entirely possible to me that editing out genetic imperfections will bring unintended consequences. What else might we eliminate, either because we don’t full understand how all our genes work together or we ignore the full implications of so-called flaws? There are myriad theories about the imperfection of our ancestral geniuses. Michelangelo displayed symptoms of autism. Hemingway was bipolar. Einstein might have been dyslexic. Google it. There are plenty more.

I don’t mean to diminish real suffering. After all, Hemingway committed suicide at 61.

Before we start messing with traits we decide are undesirable, we need to understand the implications. Could we have had Hemingway’s brilliant writing without his mental illness or did his mental illness prevent him from achieving more?

Until we know the answer to that, we need to proceed with caution.

Marking Time

Eight years ago I was ecstatic that our nation hit a milestone with the inauguration of the first African-American president. It seemed we had turned a corner both in racial symbolism and in core values. All seemed possible. A young president with a beautiful family close to my own children’s ages who campaigned on hope, on light overcoming darkness, on further perfecting our union was just what the doctor ordered.

Speaking of doctors, the 2009 inauguration happened a day before my mastectomy, just a couple of weeks after I finished my 6th and final chemo on Christmas Eve. I crassly commented (under the influence of morphine) that I’d gotten rid of three boobs in 24 hours. No doubt, the rising tide of optimism lifted my boat during those dark, bald days.

For eight years, the White House was full of grace, intelligence, and integrity. Now we’ve been whipsawed back to darkness. An unsettling uncertainty lies ahead but I assure you that dawn always comes.

I’ve lived that Truth.

I bet you have too.

I’m not planning to watch the inauguration today. I respect that Mr. Trump is (almost) our president and will do my best not to call him names if I find myself under the influence of morphine. The peaceful transition of power has never been more impressive, in my lifetime at least, because for the first time I had doubt that it would happen.

And I do hope that he is successful in bringing America together, in fixing the healthcare system, and in enabling the disenfranchised.

An America greater than the one we celebrated on 1/20/09 is hard to imagine. But we created that and we can create more. As we plow forward as one nation, don’t forget the poem Elizabeth Alexander’s read into the sharp sparkle of winter air.

Praise Song for the Day – Elizabeth Alexander

Each day we go about our business,
walking past each other, catching each other’s
eyes or not, about to speak or speaking.

All about us is noise. All about us is
noise and bramble, thorn and din, each
one of our ancestors on our tongues.

Someone is stitching up a hem, darning
a hole in a uniform, patching a tire,
repairing the things in need of repair.

Someone is trying to make music somewhere,
with a pair of wooden spoons on an oil drum,
with cello, boom box, harmonica, voice.

A woman and her son wait for the bus.
A farmer considers the changing sky.
A teacher says, Take out your pencils. Begin.

We encounter each other in words, words
spiny or smooth, whispered or declaimed,
words to consider, reconsider.

We cross dirt roads and highways that mark
the will of some one and then others, who said
I need to see what’s on the other side.

I know there’s something better down the road.
We need to find a place where we are safe.
We walk into that which we cannot yet see.

Say it plain: that many have died for this day.
Sing the names of the dead who brought us here,
who laid the train tracks, raised the bridges,

picked the cotton and the lettuce, built
brick by brick the glittering edifices
they would then keep clean and work inside of.

Praise song for struggle, praise song for the day.
Praise song for every hand-lettered sign,
the figuring-it-out at kitchen tables.

Some live by love thy neighbor as thyself,
others by first do no harm or take no more
than you need
. What if the mightiest word is love?

Love beyond marital, filial, national,
love that casts a widening pool of light,
love with no need to pre-empt grievance.

In today’s sharp sparkle, this winter air,
any thing can be made, any sentence begun.
On the brink, on the brim, on the cusp,

praise song for walking forward in that light.

Of Bubbles and Bias

At dinner last night, my high school aged son brought up a discussion on bias from earlier in the day. His class had to put different media outlets on the left or the right based on their perceptions. Given our chosen geographic location the results weren’t surprising – everything but Fox News went on the left.

As soon as he told us that, I know he regretted it. Here comes a life lesson.

When are we going to stop with these over-simplified divisions between us and them? The only ones who gain from this kind of sorting are people who want to divide us. As Trevor Noah, a man who grew up illegal in Apartheid South Africa by virtue of his mixed race parents so eloquently wrote recently, divided people are easier to rule.

I told my son that most people consider bias to be anything with which they disagree.

The problem with categorizing something or someone as left or right is that it’s completely relative to where you stand. I think we tend to believe that wherever we stand is dead center so we speak with a false sense of authority about other people’s biases.

Likewise, since the election there has been much talk of people living in bubbles. Usually it’s a gloating comment, pitting people who live in “the liberal bubble” against “real America.” Again, this sort of comment shows an utter lack of awareness about one’s own bias.

In the interest of peacefully moving forward, let’s clear one thing up.

We all live in bubbles.

It’s just the nature of things.

Time is a finite resource; we choose how to spend it. We create our own lives and by definition that means we reject alternatives. For example, I’m the mother of two children. Had I chosen not to have children, my life would look very different now. My experiences, my wisdom, my expertise, my blind spots, my weaknesses – they would not be the same as they are today. I have routines, friends, family, a preferred Kroger store, etc. This is my bubble.

And that’s fine.

The trouble starts when we refuse to recognize that the paths we choose narrow our vision. Trouble becomes fully manifest when we confuse our comfortable, functional bubble life with The One True Way.

When you believe that your life, your beliefs, your ideas represent some sort of Center Ground and The Best Place To Be, it’s time for some soul-searching.

I don’t believe we invented this problem, but the ease with which we can immerse ourselves only in information that agrees with our point of view has certainly accelerated with the internet.

Bubbles and biases can seem like the universe if we only see what concurs with our beliefs.

How do we break out?

It’s simple. We just have to be aware.

Ok, simple words but maybe not so simple to practice.

I’m far from perfect but I have a good start. A question I always return to when I think I have it all figured out: What am I missing?

Answering that question is a great place to begin.

The Gene

The temptation
To take the precious things we have apart
To see how they work
Must be resisted for they never fit together again
~ Billy Bragg, “Must I Paint You A Picture”

In my first epic conquest of 2017, I’m wrapping up Siddhartha Mukherjee’s The Gene: An Intimate History. Much like The Emperor of All Maladies, it’s a sweeping, ambitious book that explains where we are by offering a detailed history of how we got here and speculates about what Mukherjee calls “the future of the future.” As E.F. Schumacher wrote, “Any intelligent fool can make things bigger, more complex, and more violent. It takes a touch of genius—and a lot of courage to move in the opposite direction.” Using science, history, and his own story, Mukherjee does just that.

The story of genetics reveals a pattern: Our technological capabilities outstrip our wisdom about how to use them. The technology itself is neutral; our incapacity to predict consequence is the problem, created in part by our inability to remove subjectivity from the equation.

Nazis attempted to rid the world of Jewish people, an offshoot of the eugenics movement that sought to perfect humans through “positive” means (such as creating a sperm bank from self-identified geniuses in hopes of creating more) and “negative” means (disabled children euthanized in Nazi Germany). What seemed to be lost on this whole movement was that the definition of “desirable versus undesirable” is purely the opinion of those who write the rules.

Nazism certainly taught us of the evils that can happen when a government defines those parameters but the stunningly bad ideas don’t stop there. The first disabled child euthanized during Nazism was a baby named Gerhard Kretschmar. Hitler did not seek him out. He authorized the murder after a written request from Gerhard’s parents.  Nazis were seeking racial perfection as they defined it and a profoundly disabled baby didn’t fit that definition, according to his own parents. Likewise, in India and China countless female babies have been killed by their parents simply because they are born female into deeply misogynistic societies. It doesn’t take government intervention for people to behave in abhorrent ways.

Now, technology marches forward and scientists understand more about how genes and the genome influence our lives. We sit on the verge of successfully editing genes in humans. Rather than simply plowing forward into everything that’s possible, I think we need to catch up our understanding of what this means. This book is a great start.

Some diseases, such as Tay Sachs, are caused by a single genetic mutation. If both parents carry the recessive mutation, there’s a 50% chance a child will inherit it and a 25% chance s/he will actually develop the always fatal disease. Parents can be tested before deciding to conceive. Using in vitro fertilization, an embryo created in a lab can be tested before implantation. A fetus can be tested in utero.

I had a brush with a devastating mutation during pregnancy when an ultrasound detected the possibility of Trisomy 18. Further non-invasive testing showed it to be highly unlikely and I eventually gave birth to my now fifteen year old son. Had he carried that mutation, he likely would have died before his first birthday so my husband and I would have been faced with a choice to terminate the pregnancy.

But many conditions don’t have such a clear-cut genetic cause or outcome. The BRCA mutation, widely known and little understood, is often called “the breast cancer gene.” In actuality we all have BRCA genes which play a critical role in repairing damaged DNA. But if a certain mutation exists the likelihood that a person will develop breast or ovarian cancer jumps to about 80%. The presence of the mutation doesn’t tell you what kind of cancer it will be or when it will develop.

Significantly, it also doesn’t explain why some people with the mutation won’t develop cancer at all. But as long as breast and ovarian cancer remain incurable, people often choose to have their breasts and ovaries removed before cancer develops and to take medication in order to reduce their risk.

Let’s say we can identify the BRCA mutation in utero or even pre-implantation. Should parents be given the chance to screen fetuses or pre-implantation embryos? Is it morally acceptable to choose not to bring children with those mutations into the world? What risk/probability level of the mutation leading to disease would we consider acceptable?

Who Decides?

And what if we can edit out that mutation? Should we? Might we also edit out something else that we can’t predict? What unintended consequences might come from Genetically Modified People?

I suspect most of us don’t have the emotional or psychological capability to make these decisions rationally, to really think in terms of probabilities and odds. I speak from experience here too. When waylaid by a cancer diagnosis, my frantic response was get it out now.

How will owning our own genetic knowledge will affect our decision-making?

And, again, who decides?