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?

Last Year’s Language

I am not eager to rehearse
My thoughts and theory which you have forgotten.
These things have served their purpose: let them be.
So with your own, and pray they be forgiven
By others, as I pray you to forgive
Both bad and good. Last season’s fruit is eaten
And the full-fed beast shall kick the empty pail.
For last year’s words belong to last year’s language
And next year’s words await another voice.

From “Four Quartets – Little Gidding”  By TS Eliot.  Read the whole thing here.

I used to pick out three words to start the New Year, a practice inspired by Philippa at Feisty Blue Gecko. A fine practice for sure, but after a few rounds I felt less than genuine as my urge to keep it fresh and entertaining got in the way of the honest banality of my life.

And, really, this whole Gregorian calendar thing is a human construct – why should I have to become a new person when it’s so gray outside and the minority is foisting its will upon our once great nation? I’d rather take a nap.

I read this great wrap-up of 2016 from Accidental Amazon Kathi. Not one to mince words, Kathi lays out the mess of the year that just ended and the potential mess that lies ahead. I particularly appreciate her sentiment about small, incremental changes.

[E]very small act of kindness, consciousness, or goodness can make a small change for good in the world, at least for a moment. And that those acts can influence others to do likewise. And if we live our lives that way, deliberately acting from our best selves, those small changes can add up to bigger ones. So, it matters that you treat everyone with respect and kindness, even if you don’t like them, or agree with them. It also matters that you treat yourself with kindness and respect…

That’s radically different from the world I see around me. Everything – cable news, social media, radio – tells me that I need to be OUTRAGED about something. And REACT.

WITH OUTRAGE.

Guess what I just realized?

I don’t have to do that.

When I go to the amusement park, I decide what rides I want to patronize. I don’t like spinning in circles so I don’t ride those that spin me in circles. Fast circles, slow circles, don’t like them. So I steer clear. I even politely wait in the shade if my park companions want to ride. I like watching people, so it’s a win-win.

Don’t get me wrong, there is no shortage of angering things in this world. But I wonder if that blood pressure raising, adrenaline rushing sort of rage is its own form of addiction. Like any addiction, it demands to be fed first and often.

Just this morning I read about the GOP getting rid of independent ethical oversight and I felt the juices rising. It finally occurred to me that maybe this has been the game all along – put a clown in the White House to distract the rabble and ram through an agenda the majority of voters rejected.

That’s about enough to send me out to the streets to shout at lampposts, but a lightning bolt flashed – we all need to take a deep breath and stop being useful idiots for these power-grabbing overlords.

Today I stepped off the spinny ride and am recovering my footing. I want to think and write and talk about things that require more than 140 characters and the attention span of a flea.

So I’m going to hang around here and I welcome you to join me. Let’s search for this year’s voice.

Waiting

I’m so tired of the screaming and the yelling. In the last month, I’ve been turning to a website –  On Being – to escape the outrage. This morning I read All Creation Waits by Gayle Boss and amazed, not for the first time, about how the writing at On Being shows up at just the right time in my life.

Christmas isn’t my favorite holiday. It might rank below Flag Day on my list although my attempts to explain why never fully encompass the complexity of my opinion. Boss’ essay succeeded where my own words fail. Please, read it all, but I found this paragraph essential:

To be sure, some part of “the holiday season” is celebration of the harvest, for us, as it was for our ancestors, even if our personal harvest doesn’t involve crops and barns. We throw a party to mark the end of another year and all it’s brought. We do this in a big, bright, loud way. But for us also, as for our ancestors, the dark end of the year brings unrest. It is an end. It comes without our asking and makes plain how little of life’s course we control. This uncertainty, we don’t know how to mark. And so it marks us. We feel weighted, gloomy even, and we feel guilty because voices everywhere in myriad ways sing out, “It’s the Most Wonderful Time of the Year.”

As Charlie Brown would say, “THAT’S IT!”

There’s something buried deep in our DNA that knows this is an unsettling time of year, but we are bombarded by messages that lead you to believe that sort of thinking is wrong.

Something about the outdoor lights, inflatable snowmen, the sales on 60″ televisions, and the singing of Burl Ives is at complete odds with what is happening to the world in December. The light is fading, the days are gray, the grass is browning, the trees seem cold and hungry.

It’s the incongruity of it all that gets to me.

We are complicated creatures: surely we can allow multiple emotions, even those that seem to be in conflict with each other, to coexist without judgment. Without seeming ungrateful. Without the shame of believing you’re doing it all wrong.

This year, 2016, seems particularly illustrative of this notion of the overlapping of opposites. Something is ending – something a lot of us considered to be a great sign of progress in our country. Something else is about to begin – something unknowable but carrying the potential to undo to that progress.

Earlier this month I read and bookmarked another post from this site, The Question of Redemption by Miguel Clark Mallet.

As I’ve detailed, this election was a drenching of ice cold water in my face. I accept now that my neighbors, my country are not what I thought they were. I understand that there is still enough fear, prejudice, and hatred in our country to tip the balance of power. And that far from my lofty egalitarian ideals, baked into our system is the Orwellian notion that while all animals are equal, some animals are more equal than others.

Overcoming that systemic advantage of power to self-preserve seems impossible to me now.

But reading Mallet’s post brought a deeper shame – I might be one of the last people on the planet to realize these things. My browner fellow citizens have been saying it for generations but I had to experience it to believe it. Maybe I wouldn’t have been so complacent, so trusting, so invested in my belief in the goodness of others if I’d just listened.

The question is — as the question always is — what to do next.

I return to my biggest capital T Truth. Nothing is permanent. Nothing.

We’re approaching the darkest days. It’s ok to be unsettled. Experience tells me the light will return. It’s ok to be hopeful. That, I think, is the essence of the season.

candles_large

 

Today in Women’s Health

I’ve been deliberately planning to look at the big picture of health care and to post what I learn. I’m still planning to do that.

But.

Three stories have me so incensed right now that I have to share.

  1. The doctor Trump has chosen to make the head of Health and Human Services is Tom Price. Without a doubt, elections have consequences and this is a biggie since the guy is vocally opposed to the Affordable Care Act. But he also belongs to a whacko group called the Association of American Physicians and Surgeons. Among other anti-science travesties this group pushes, they continue to repeat the disproved assertion that abortion causes breast cancer. (also the dangerous lie about vaccines causing autism, that HIV and AIDS aren’t related, and that Obama won by hypnosis). To be fair, I haven’t found any evidence of Price expressing these points of view but if he does, he’s got no business setting health policy for our country.
  2. In Texas, a new law will go into effect on December 19th requiring women who have abortions to pay for the burial or cremation of the fetus.  Currently, tissue is disposed of in the same sanitary fashion as all medical waste just like my cancerous and cancer-free breasts were after my mastectomy, or my husband’s appendix was after his emergency surgery. Obviously, this law is a way to bully women into believing that they’ve “killed a baby” rather than exercised their constitutional right to terminate a pregnancy. This is what I meant when I said we risk normalizing extremism.
  3. In Ohio, the state legislature passed a “heartbeat bill” last night, banning all abortion once the “heartbeat” can be detected, or at about six weeks gestation. First, a little reality check about the heartbeat. A Doppler fetal heart monitor uses technology to create a heartbeat sound. You’re not hearing the actual heartbeat.

And are we really saying that the beginning and end of our constitutional rights are defined by the current quality of technology?

Maybe so but apparently according to Ohio’s Senate President Keith Faber our rights definitely depend on who’s in office. He had previously opposed the heartbeat bill as being unconstitutional. But now he says, “A new president, new justice appointees changed the dynamic and there was consensus in our caucus to move forward.”

Also according to the article:

Republican Representative Jim Buchy said he thought passage of the Heartbeat Bill would encourage personal responsibility.

“What we have here is really the need to give people the incentive to be more responsible so we reduce unwanted pregnancies”

ARE YOU KIDDING ME?

Pay attention folks. This isn’t about babies. Being forced to carry a pregnancy to term is the price a woman has to pay for being irresponsible. (or raped, by the way, but that’s another topic).

Make no mistake about it, we are talking about forcing responsibility on women only since men always have a choice to stay or walk away.

It’s like we’ve forgotten the dark days of biology being destiny.

I’m here to remind you.

One question I have: if I have to be legislated into taking greater responsibility with my sex life, how on earth would you ever believe I’m capable of making responsible decisions about pregnancy or an eventual child?

Oh gosh. Maybe this isn’t about the eventual child at all.

Freedom, You Are Arriving

For to be free is not merely to cast off one’s chains, but to live in a way that respects and enhances the freedom of others.
~ Nelson Mandela

In an audio meditation series that accompanies her book Real Happiness, Sharon Salzberg reflects on the title subject. The urge to be happy is rightful, she says, but sometimes we fail to understand where it is found.

Fuzzy terms we all believe we intrinsically understand but can’t readily define tend to trip us up.

In America the closest thing we have to a sacred term is freedom but you don’t have to go far for proof that we readily conflate freedom of speech and freedom from consequence. Our fuzzy term confusions have been amplified recently as Trump and his most passionate followers have celebrated violent, divisive, crude, and belittling language with something of a religious fervor.

Time after time, you hear ardent supporters say that they like that Trump because he isn’t bound by social convention, by politeness. What they love about him is that he says whatever is on his mind. I suspect that what these supporters actually love is that Trump says what is on their minds: a much darker issue.

Bragging about sexual conquests fueled by fame, deriding whole nations and religions, dodging taxes, threatening to jail opponents for revenge, disrespecting the media for doing their jobs — this is not freedom. This is acting like an asshole.

If this appeals to you, then I suggest you look in the mirror. Decouple that attraction from lofty notions of freedom and begin to do the hard work of understanding why you envy those words. Trust me, it’s grueling and ugly work but ultimately the only thing that can set you free.

I heard a priest say that the best definition he’s ever heard of freedom is the opportunity to do the right thing. Next time you look at your broad striped and bright stars or bumper sticker magnet, think about what you will do with today’s opportunity to do the right thing.

In that vein, here is one of my favorite poems to kick off the weekend. It’s gray outside my window now but the slant and tilt of fall fading into winter brings us a lot of opportunity for great skies.

The Journey
~David Whyte

Above the mountains
the geese turn into
the light again

20161123_072646
Recent Great Sky, as seen from my driveway

painting their
black silhouettes
on an open sky.

Sometimes everything
has to be
enscribed across
the heavens

so you can find
the one line
already written
inside you.

Sometimes it takes
a great sky
to find that

first, bright
and indescribable
wedge of freedom
in your own heart.

Sometimes with
the bones of the black
sticks left when the fire
has gone out

someone has written
something new
in the ashes
of your life.

You are not leaving
you are arriving.

Doing

The past is never dead. It’s not even past.
~ William Faulkner, Requiem for a Nun

Peaking out from my bomb shelter, here is a little myth busting for you.

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I don’t know if Trump tweets are a bread and circuses move or if he’s truly got thin skin and an impulse control problem. We need good, strong journalism to hold him accountable. Trump’s tweets insulting the cast of Hamilton served as a convenient misdirection from his $25M fraud lawsuit settlement. There are no shortage of potential scandals coming our way and we need our 4th estate.

We all need to pay attention here because one of the greatest risks we are facing is normalizing extremism.

I believe we need to realize that good journalism is expensive. If you want free content, you’re going to get what you paid for.

Subscribe, folks. Read. Speak up.

It might be too late to stop this train wreck, but it’s not too late bend the curve of the tracks.

Redoing

My old tagline in the Uneasy Pink days was “making meaning out of chaos” but I’m struggling to make any meaning these days that isn’t rimmed with disgust.

Everywhere I’ve gone in the last week: Kroger, church, social gatherings, Kroger again a few more times, I keep returning to the same thoughts.

These people voted for a guy who bragged about sexually assaulting women. A guy accused of sexually assaulting women. A guy without a lick of experience. A guy facing lawsuits for shady business practices. A guy who called immigrants rapists and murderers. A guy who wants to ban people of certain faiths. A guy who gets into twitter battles with Cher. A guy who believes in torture. A guy who didn’t campaign on realistic proposals. A huckster. A reality television star.

A guy who made an alt right white nationalist superstar a senior advisor.

And why?

Because his opponent has been in public service for decades. She, to quote my friend Mary Pierce Brosmer, tried to do big things and therefore made big mistakes. A woman who has been under attack since the 1990s, who has been the subject of flimsy accusations that have never amounted to anything but sound and fury. A woman whose obscure mistakes regarding an email server can’t be forgiven, even while her opponent claimed that he could walk out on 5th Street, shoot someone and still not lose voters.

A woman.

And how?

We’re still unpacking it, but I believe a decades-long, intense campaign of misinformation paid off. I believe we live in a country still so stuck in the dark ages that many of us can’t get behind a female change agent. Yes, parts of our country felt unheard and wanted to upend the status quo, but Trump managed to wrap that status quo bogeyman in ways that touched deeply held, unexamined, bigoted stereotypes.

And without a doubt, I think there was a successful strategy to exploit the electoral college system to upend the popular vote.

(NOTE: I’m still researching the turnout issue I mentioned in my last post. I might revise what I said about the turnout being depressed on the Democratic side because that might not be true)

Most depressingly, I realized this week that I just don’t live in the country I thought I lived it.

That’s a deeply wounding thought, not a golly gee my team lost the championship level of disappointment.

My neighbors are not who I thought they were.

They were willing to overlook the serious flaws of this man.

Again, Why?

I don’t care right now, because no answer is going to make sense to me right now. I just know I’m done arguing about it. I’m done with the crazy upside down world that keeps yelling at me that black is white.

I’m in a discernment phase now. Will I become more politically involved? Less? Stand and fight? Pass the baton? Sell my house in red-land and move to blue-land? Sell it and move to the middle of nowhere? Something else I haven’t dreamed up yet?

I’m shrinking my presence online for now, starting with the that infected petri dish known as Facebook. More on that decision to come, but as of right now at least, you can still find me here and on Twitter @uneasykt.