Farewell, facebook, with regret and relief

My relationship with social media has felt uneasy for a long time.

My son has nagged me for YEARS to get off these platforms. He is one of the best critical thinkers I know. (I say this with pride now, but trust me, this was not so endearing when he was a kid.) He has deep expertise in this area, so I believed everything he told me about the ways I was being used and manipulated on social media. I had a sense of the invisible, dangerous repercussions of what it has created and is creating.

“Mom, when are you going to get off social media?” He asked this question with this exasperation almost every time I spoke to him. And like any good addict, I would defend all the delicious things I love about something that I suspected, deep down, was not so good for me.

Even with all his information, I’d resisted. It felt too hard. I’ve tried Facebook fasts and scaled-back participation — I barely use Twitter and Instagram. But I have been afraid to permanently cut the cord. Honestly, I still am. Partly this is out of FOMO (fear of missing out), but mostly, it’s because I am loathe to give up the meaningful connections and community I have found on social media. With a few exceptions, I’ve met in real life every friend I have on Facebook. And much of my family is there.

I clung to what I was getting out of it, and that felt like a lot. I have discovered and renewed relationships. I’ve learned of my peeps’ triumphs and tragedies, about new lives who have entered the world and old souls who have left it. The love and support I’ve received in my own difficult times has been abundant. I’ve been awed and moved by my friends’ knowledge, wisdom, and humor. And their willingness to help. My intellect and thinking has been stimulated and changed by great, thought-provoking, and humorous content that I likely wouldn’t have found on my own. I have engaged in spirited debate and found like-minded souls in many of the groups I joined. Lots of fun snark fests. Learning opportunities. Thanks to my diverse, interesting, adventurous friends, I’ve traveled the world vicariously. And the birthdays!

I mean, that stuff feels really good! Why would I race to give it all up?

While this decision to leave social media has been a long time coming, I finally was persuaded to act after reading a book by Jaron Lanier: 10 Arguments for Deleting Your Social Media Accounts Right Now. A summary of his arguments can be found at the end of this blog. If you’re interested, read the book, and make up your own mind. I hope you will.

In this easy read, 150 pages or so, Lanier builds a compelling case for the ways social media companies are wreaking serious, dangerous havoc on the world, and how the people running them are enriching themselves by refusing to pay the people who make them rich.

That would be us.

Lanier should know — he’s one of the insider Silicon Valley billionaires who has been hands-on in social media..

I’ve long been alarmed by the scarcity of thoughtful conversation and critical thinking and how it’s bled over into public discourse. What I didn’t fully understand before I read the book is that the SM structure actually encourages and supports negativity and conflict. Its algorithms purposely make viral the lies, distortions, nastiness, and ginned-up outrage. Who needs context or complexity when you get such great reward for pissing people off? Who needs love and compassion when it’s so satisfying to spread hate and demonize the people you disagree with?

I’ve always been bothered that Facebook’s algorithms are deciding what I get to see, but I never realized to what extent we are being manipulated. All those likes, loves, those angry and sad emojis?They trigger those algorithms, computer code completely lacking in mind, heart, or soul. Bots and a lot of invisible bad actors have great power over what you get to see. You can’t outsmart them. They constantly scan for ways to reinforce your biases, manipulate your behavior, and keep you hooked.

Don’t even get me started on what social media is doing to our political systems— in this country and globally. What Lanier reveals about how social media supports authoritarianism throughout the world is probably the most frightening thing I have read in a long time. In this new world, he argues, it’s entirely possible the arc of history will NOT bend toward justice. The day I wrote this blog, both Twitter and Facebook — the companies, not people using their platforms — offered evidence that a group backed by the Kremlin is again meddling in the U.S. presidential election.

Finally, in spite of my commitment to live an intentional life, I often find myself behaving on social media in ways that don’t align with who I want to be in the world.  (See argument No. 3 below.)

Reading Lanier’s book made me realize that this “free” social community that I have valued highly comes with calamitous cost. His book made clear that I could not, in good conscience, continue to be complicit in shaping a world that I don’t even want to live in. I can no longer justify or defend my participation there.

I have no illusions that my leaving will make a difference. My absence won’t crumble the empire. Even the author, in the book’s afterword, admits he knows his arguments will likely fail to land. And I totally get that for many people, leaving isn't a realistic option. It’s how people do business these days.

Even so, in a few days, I’ll permanently delete my profiles on Facebook, Instagram, and Twitter. My Facebook account, where I spent the most time, has been deactivated for more than a week. I took this first step to see if I was really ready to break the cycle of codependency. I wanted to experience the feelings of withdrawal. The separation also has been a self-imposed test to see whether I can live the courage of my convictions.

I feel clear about this decision, and this will be my last Facebook post. It will remain here until the download of my Facebook data is delivered. I'd love to hear comments or feedback about what I’ve said or what I’m doing, but please post them on the Medium site or the blog on my website. Otherwise, they will disappear when my account does.

Also, while I’m not invested in anyone sharing this post, should you wish to, please create a new post and copy the Medium or marenshowkeir.com blog link. Otherwise, people won’t be able to see it in a few days.

Breaking up really is hard to do. And it’s not you, it’s social media. I am feeling super vulnerable about this. It is painful — but it also feels right. I’ll be back in a heartbeat if something better comes along. But for now, I’m out.

Please keep in touch. I am easy to find. I’ll continue using my LinkedIn account, and my contact information is on my website: marenshowkeir.com. If you don’t have my mobile number and want it, please shoot me an email.

I was going to write about how much I’ll miss you, but I hope that won’t be true. I fully intend to find ways to stay connected. What that looks like I’m still not sure, but I am committed to figuring it out. In the meantime, this is my Facebook farewell, with sincere thanks for the good memories.

A summary of Jaron Lanier’s arguments:

(Emphases are mine)

1: You are losing your free will

2: It is the most finely targeted way to resist the insanity of our times

3: Social media encourages you to be an asshole

4: It is undermining the truth

5: It is making what you say meaningless

6: Social media is destroying your capacity for empathy

7: It is also making you unhappy

8: Social media doesn’t want you to have economic dignity

9: It is making politics impossible

10: Social media hates your soul

And one more, added by me:
11: Social media (specifically Twitter) has ruined the presidency

#ididntreport because I was 4 years old

The first time a boy sexually assaulted me, I was four years old. It is one of my earliest, clearest childhood memories.

I remember how the rumpled chenille bedspread on the twin bed in my brothers’ darkened bedroom felt against my skin. I noticed my attacker’s nervous eyes, which continually darted to the door. This boy, who lived in the neighborhood and attended the same church I did, promised to deliver a bag of candy if I’d cooperate. “Shut your eyes,” he said sternly. “No peeking!” I felt him tug down my shorts and panties. Something rubbed vigorously against the place where my pee came out. He tried to poke something in. (Where? I wondered. Why?)

I don’t remember his age, but he was old enough to know it was wrong. Hence, the promise of candy in exchange for cooperation and silence. I loved candy.

I peeked anyway. I had brothers. I knew what a penis was (though I didn’t know what it was called.) That’s what he rubbed against me. In that moment, I was so curious. Why was he doing this? Why was it worth a bag of candy? Why did it have to be a secret? After a time, he told me to pull up my shorts. He grabbed my shoulders and looked at me intently. “Remember,” he said. “You can’t tell anybody.”

His big mistake, looking back, was not delivering on the promised candy. I was mad about that, so I told my oldest brother. He told my parents. Only in their questioning of me did it become clear that something Very Bad had happened. There were no witnesses. They did not call the police. I remember a bunch of adults huddled in my living room, and later, my father talking to this boy in the garage. I discovered years later that he had assaulted at least one other of my childhood friends, who lived in the neighborhood and went to the same church. I don’t know if her parents called the police. I doubt they did. Eventually, I learned his name.

I didn’t feel traumatized at the time. I am outraged now. My parents, who were very loving, are dead. I wish I could ask them why they didn’t report, but I am pretty sure I already know the answer. It just wasn’t done back then.

I did feel traumatized by what happen to me when I was 13 or 14. Details are vague except for this: A bunch of us were gathered at a pool without adult supervision. Two boys, friends of mine, undid the hook on my bathing suit top — it was lime green with little white flowers on it. They began tugging, trying to pull it off. I can’t give you the names of everyone who was in attendance, but the hooting and laughter and encouragement from others is seared into my brain. I desperately clung to the side of the pool with my stronger right hand, as my left hand clutched my bathing suit top. I screamed for them to stop. Eventually they did.

The sting of helplessness, humiliation, and shame I felt during that assault is vivid. But I’d bet big money those boys, whom I still know, have no memory of it. I didn’t tell anyone because when you’re in the throes of adolescence, who wants to be the crybaby, the spoil sport, the girl who can’t take a joke? Those boys grew into men. From everything I can see, they’re good men. When I go to high school reunions, I hug them. They have daughters, and granddaughters. Lately, I’ve wished I could summon up the courage to ask, not with judgment but with true curiosity: “How would you feel today if that happened to your daughter?”

Because of the inescapable public discourse this week, these memories and so many others have been swirling in my mind. So many stories. Unbidden memories stream on-again, off-again on my mental movie screen. Some memories are fairly mild, hardly worth watching. Others are outrageous and full of pain. Some incidents were fueled by alcohol and partying (I’ve seen plenty of drunk church goers in my day, myself included.) Others happened when I was stone cold sober. Things sometimes happened under the cover of dark. At least one incident happened on a public street in broad daylight when I was in my 30s. A man approached me. I thought he was going to ask directions. Instead, he boldly ran his hand up my thigh and grabbed that part of me that the president has bragged — on tape — about grabbing. (Grab. Brag. Funny how similar those words are.) It was over in an instant, but I still remember the leering grin he flashed at me as he walked away. And how exposed and vulnerable I felt.

The common thread that weaves these disparate memories is this: A man felt entitled to help himself to various parts of my body without my permission. Why didn’t I report? Why would I? Like millions of my sisters, I just chalked it up to the price of being female.

I’ve had continuous arguments between me and myself over whether to share these stories publicly. My stories are like the millions of other stories being told. How could my voice add anything new or unique? And while these incidents have certainly colored my world view and influenced my behavior, they do not define me. They are by no means the worst thing that ever happened to me.

Yet I feel compelled to share. Maybe because I have grandchildren — one of my granddaughters just turned 4. I don’t want them to grow up in a world where too many men see female bodies as some sort of free sexual buffet to which they’re entitled. I want them to live in a culture where everyone — men and women — is respected as a whole complex human being, no matter who they are or where they come from.

Here is what I know:

I am strong and smart, capable and confident. I am loved. I have a truly rich life, for which I am grateful every single day. I also know that everybody has a story, and everybody’s experience is true, and that many things can be true at the same time. Excavating the Real Truth, if that even exists, can sometimes be impossible. There may even be times when the truth is irrelevant, (though I am less sure about this.)

Here is something else I know:

We are all, men and women, human and flawed. People make mistakes. People need forgiveness and redemption. And in the experience of my fairly long life, that only comes with awareness, accountability, contrition and change.

It is important to me to remember, and for you to understand, that the things that happened to me did not ruin my life. Not even close. But they happened. And I didn’t deserve any of them. I am not to be blamed. And they matter, even if no police reports were filed.

WHAT THE COLORADO RIVER TAUGHT ME ABOUT BEING SINGLE

Wes and me, ready for the river.

My pal Wes and I consider ourselves to be ageless — at least most of the time. Even so, we wanted to do something epic to celebrate a significant year in our chronology. She suggested a Colorado River rafting trip, which hovered near the top of her bucket list.

“Let’s do it!” I crowed.

I had already checked this one on my bucket list, though that didn’t dampen my enthusiasm for a repeat. In 2006, I had embarked on the same adventure with the love of my life, a few weeks after we were married.

When we met in 2005, Jamie and I had knocked out two (each) practice marriages. We’d given up on looking for The One. We weren’t bitter or cynical about love, but we both had figured finding a True Life Partner in this crazy, crowded world wasn’t meant to be. And then, through the grace of cosmic serendipity, our paths crossed. We started out working together, quickly fell in love, and married. We couldn’t believe our good fortune. He was the full package: my best friend, my lover, and a partner in all the best senses of the word. Then our great love story manifest the requisite tragic ending: In 2014, Jamie was diagnosed with ALS. He died on his 63rd birthday in 2015, the 10th anniversary of the day we met.

Doing the river a second time would be full of sentiment and memories. I knew this. Even so, I was excited to experience it with Wes, my true and loyal friend since high school.

Among our river boat companions, none of whom we’d met before, were four couples. Two had found each other later in life, through online match services, and their marriages were fresh. The other two couples, neither of them in original marriages, had been together longer, with long-established lives and blended families. We also traveled with a family from the Netherlands: George and three of his four adult children, Pauline, Adriaan, and Olivier, who were accompanying their father on his 20-year-old dream, finally come true. And then there were four single women, including Wes and me. Two were widows, and the other two had divorced and never remarried.

Throughout the trip, the singular gravity pulled the four of us together from time to time, in various configurations. We shared lots of things, but in particular, we often talked about being single, with a focus on the advantages of being unattached. We could do what we wanted without consulting or negotiating. We had singular control of our budgets and schedules and living environments. We talked about our hear-me-roar strength and independence. We could take care of ourselves. In one particularly memorable chat, sandwiched between the woo-hooting that erupted when we hit the rapids, Cindy, a widow for 11 years, cracked: “I don’t want to be anyone’s nurse or anyone’s purse.” Wes and I laughed and nodded in enthusiastic solidarity.

On the river in 2006 with Jamie, the love of my life.

Even so, watching the four couples together often gave me a sad and poignant pang. This husband offered his hand and encouragement while helping his wife up and over boulders on a challenging hike. That wife delivered morning coffee to her husband. They reminded each other to use sunscreen, to buckle their life vests, and to stay hydrated. As we ran the river, I’d surreptitiously watch the couples. Rod and Cathy, setting up camp. Ron and Cindy holding hands on a dusty trail. Ed and Mary exchanging kisses. Peggy and Phil bending their heads in hushed, intimate conversation. As the boat hit the sand for the night, the couples consulted on where to find prime camping spots. They huddled close to each other as we gathered for adult beverages and appetizers in the evenings. All the stuff that Jamie and I had done in 2006.

From the start, I noticed the continuous micro-expressions of affection and caring, which also delivered a fair number of emotional thwacks. Missing Jamie is a constant, a thrumming deep in my bones that changes in volume but never disappears. I had expected that thrumming to intensify on the river, so that wasn’t a surprise. What knocked me off center was the emotional stew of regret and envy. I felt an uncharacteristic yearning for the restoration of the partnership I was witnessing among these couples. I was newly bereft. How dare life rob me of that gift — the confidence that came with knowing my partner had my back?

And then one night, when sleep eluded and brilliant stars enticed, the error in my perspective began to shine through my dark, self-pitying thoughts. On the river, I was constantly surrounded by partners — I just wasn’t married to them. Wes and I chose our campsite together, with careful consultation. She’d jump off the boat when it beached, and I would hand her our day bags so I could easily jump off too. Laughter punctuated our teamwork as we helped each other set up cots and organize the campsite: “The ground cloth can go here. We can hang our wet clothes on this rock.” We held the solar shower aloft for each other as we rinsed off the layers of dirt deposited by river water and sandy trails. With great hilarity, we helped each other patch our rain pants — both pairs had split in the seat — with duct tape. Wes fetched us adult beverages in the evenings. I brought her coffee in the mornings. We often sat in the evenings, heads bent together, reviewing our day.

Our partners on the Colorado River rafting adventure.

On the river, partnership wasn’t circumscribed by friendship. It was on constant display among the amiable folks who comprised our river gang. The young Dutch Brothers (as I came to affectionately think of them), had seeming super powers, appearing out of nowhere with a steadying hand when someone felt shaky about traversing a vigorous waterfall or a precarious ledge. The guides, Scott and Lena, cooked our delicious meals and attending to our needs (like, “Do you have any duct tape to fix our pants?”) They kept a watchful eye on the trails, quick to assist if scrambling the boulders could be eased by a gentle push, a tug, or a word of encouragement. Olivier, fearless in the way that only handsome, athletic 30-year-olds can be, crouched behind Wes, who clung nervously to a rocky ledge, contemplating a 10-foot leap into a pool of water. He issued gentle directions and a stream of assurances that she could do it — the way Jamie had done for me 11 years before. She leapt. The next day, George and Lynn, both in their 70s, declared they weren’t going to pass up the opportunity to make a more dramatic 20-foot jump into the river from a rocky crag. They’d been inspired by Olivier and Adriaan, who had done flips off the rock. Wes was inspired by Lynn and George. I helped her quickly divest herself of the (futilely patched) rain pants so she could climb up after them.

Throughout the trip, partners materialized as needed. After a particularly vicious wave nearly knocked Adriaan off the pontoon, Lynn quickly grabbed his lifejacket and yanked him back into the boat. Ron retrieved and returned my sunglasses, blasted off my face by a river torrent. After Wes heard Cathy fret about crawling in the dark at night to “use the facilities,” we insisted that she take one of our headlamps for the week. Cindy offered up her eye drops when my contacts got gritty. Peggy gave Wes one of her walking sticks, which she would pass to me after she had descended a steep part of the trail. As Pauline fretted about George’s precarious perch on a ledge at camp one night, several people hopped up to push the sand around and stabilize his chair. We all took swigs — right from the bottle — of Malibu Spiced Rum, booty bartered from another boating group that ran out of ice. People took photos of each other for sharing later. Lynn organized an email list. Everyone shared sunscreen, helpful suggestions, and stories. Conversations were often intimate and profound.

The center would not hold, even with duct tape.

Under the glimmering skies that night, I realized my yearning was misplaced and unproductive. Partnership doesn’t require a contract, vows, or a ring. Partnership is a simple willingness to be in someone else’s corner. To have their backs when the going gets tough. Partnership is graciously grasping the proffered helping hand.

At the end of our spectacular trip, we all exclaimed and hugged and vowed to keep in touch. One group split off, heading to Las Vegas. A smaller group, including Wes and me, took the flight back to Marble Canyon, where our epic adventure had begun. We were tired, dirty, and achy. And maybe a little sad and out of sorts. After the shuttle bus stopped, Rod hopped down from the van, then quickly disappeared in search of luggage. His wife, Cathy, a diminutive 71-year-old, blocked our exit as she eyed the big step required to descend. She sighed and murmured “Ugh. Where did he go?”

“I think he’s getting the luggage,” I said, extending my arm. “Here. Hold on to me.”

Rod might have (temporarily) disappeared, but all was well. We had her back, because that’s what partners are for.

DICHOTOMY

“It has always been much easier (because it has always seemed much safer) to give a name to the evil without than to locate the terror within….”

~ James Baldwin

Who can make us safe? What will make us safe?
Here is truth:
We will never be safe.

Only one cause of death exists, and that is birth.
To be alive is to know that one day we won’t be.

Safety an illusion.
Only fear is real.
Here is truth:
The only thing we have to fear is fear itself.

We are not safe from Christians or Buddhists or Hindus, or Jews or Muslims or Sikhs. (Well, maybe from the Buddhists.) We are not safe from atheists or devil worshippers or snake handlers or televangelists. Or false prophets.

We are not safe from the angry white person or the angry person of color. We are as at risk from the privileged as we are from the oppressed. We are not safe from terrorists or those who battle them. We are not safe from protestors or counter-protestors, pacifists or instigators, or from people who look the other way.

Teachers, preachers, rabbis, priests, imams, and gurus will not keep us safe, nor will astrologers, fortune tellers, or shamans. Not scientists, economists, writers or artists. Neither think tanks, nor blustery arguing heads, nor airwave pontificators, nor Wall Street Bankers. Corporations won't keep us safe, nor the mom-and-pop shop where the tire display was not securely fastened to the wall.

Can’t-we-all-just-get-along and a-pox-on-all-their houses won’t make us safe. Nor will our bubbles.

We won’t be made safe by the Constitution, laws, policy, politicians, presidents, prime ministers or all the king’s men (and women.)

Righteous folks and evil minds. Democrats and Republicans. Conservatives, liberals, progressives, moderates, feminists, Luddites, snowflakes, antifa, neo-Nazi, do-gooder, hypocrite, hippie, preppers, and the apathetic — we all are one in our vulnerability.

Police, spies, counterspies. All the generals and the admirals in the mighty military can’t make us safe. Nor troops on the ground, battleships on the seas, drones in the air. Satellites and nuclear arsenals will not keep us safe.

A wall will not save, nor will barbed-wire border crossings. Neither TSA pat downs nor airport X-rays. Not the defend-myself-arsenals, nor a pistol wedged under the mattress. Home security systems can’t keep us safe, nor armed guards, nor concrete barricades. The prisons are full, and still we are not safe.

Clearly the courts cannot make us safe.

The random bullet will find us, or the driver distracted by alcohol, texting, or rage. The mid-air engine failure. The unloosed boulder. A bee sting, a venomous snake does that does what it was born to do. An avalanche, a hurricane, a tornado, an earthquake, the raging wildfire and the rising seas. A hidden live wire, the slip of a scalpel, the stumble that connects concrete to cranium. One too many pills.

We are at risk from a sneeze on a crowded plane, the rogue cell in its malignant unfolding. A weakened heart, the burst blood vessel, a raging infection, the miscreant morsel of steak wedged in the windpipe. A mutant gene that decimates muscles, snatches breath, and denies dignity.

Should we survive the accidents, natural disasters, wars, disease, our stupidity and our own bleak thoughts, eventually, it will be time. No one can save us from time.

Science and facts! Reason and logic! Technology and great minds! Yes!
Yet they can’t make us safe.

Faith, God, Religion, and the rituals of an undefined Spiritual Path offer comfort, hope and peace. Compassion, Kindness, and Love light the world.
But these cannot ensure safety.

Good deeds will not make us safe, nor kumbaya singing.

Our parents, our spouses, our friends, our lovers, and our children — people we would willingly die to defend – how they want to keep us safe! They will fight with everything they have to keep us safe.

It is impossible.

If love cannot keep us safe, how can fear?

Fear can serve, of course. But left unfettered, it enslaves. We are lost in darkness.

We will never be safe. Safety is illusion.
Only by forgoing fear will freedom ring.

LEARNING TO SING SOLO

August 16, 2016
maren showkeir

Soon after I arrived in Colorado, early in May, a simple song came out of my car speakers. It was coming from the Bluetooth in my phone, but I had NO IDEA how it got there or why it started playing. It’s called “Oh, Sweet Lorraine,” and it’s produced by Green Shoe Studio. The first time I heard it, I started crying. I listened to it obsessively until I could sing along.

Oh, Sweet Lorraine. I wish we could do all the good times over again.
The good times,
The good times,
The good times all over again.
Oh, Sweet Lorraine,
life only goes round once, and never again.

Among my summer activities was learning to play the ukulele, so I decided to figure out the chords and learn to sing it. As I practice, I’ve begun altering the lyrics. (I know how much songwriters love that.) I began singing to “My Sweet James.”

And the memories always linger on,
Oh my sweet James, no, I don’t want to move on.
Yes, the memories always linger on
Oh my sweet James, that’s why I’m singing this song.

Last summer with Jamie, two months after ALS diagnosis

The memories linger on. They are a catalyst for sad and also for happy, but mostly happy-sad. The Year of Firsts will be over after today. I survived all the Bigs, along with many special days less publicly celebrated: The first anniversary of what I was certain would be my last First Kiss. The first time we said: “I love you.” Moving in together, which we called “Pod Day.” Our three honeymoons. Jamie had of those all marked in our shared calendar. But I wouldn’t have forgotten.

The “Big Firsts” didn’t leave me too battered. I knew enough to wrap myself up in a tender cocoon of solitude and reflection while my family and friends, wherever they were, held me in love and support. It’s the smaller, unexpected memories that pierce the cocoon and leave me feeling breathless, exposed and bereft. Hearing “Hotel California” in the coffee shop where we met. Breathing in the smell of his signature plaid wool cap. Stumbling across the red shoe polish that he used to shine my red cowboy boots — Jamie’s first birthday gift to me. Driving through a mountain pass last traversed with Jamie at the wheel. Sitting alone in a darkened theater. Filling out forms that ask for marital status. Zip-lining through the Colorado with my 14-year-old grandson. Spying a couple holding hands on the hiking trail.

That Facebook Memories app showing up in my newsfeed. Every. Damn. Day.

And now, the August 16 triple whammy: His Birthday, the Day We Met, the First Anniversary of his Death. Today initiates the end of the Firsts, one year without Jamie in the world. Tomorrow officially marks the beginning of something else.

            But the memories always linger on,
            Oh, my sweet James, no, I don’t want to move on.

Memories are tumbling around in my head all the time. I recognize all that grinding is knocking the edges off, making them softer, smoother, easier to hold. This is designed to make our memories about loved ones who have died easier to bear, I suppose. But I don’t want to lose those sharp edges.

The good times,
The good times,
The good times all over again.

As I began practicing with my ukulele, the lyrics felt inauthentic. Jamie was my soul mate (I admit this sheepishly, because I bullied that term big time before we met. And — I swear I am not making this up — while editing for a client today, I went to the Merriam-Webster site to look up a word. The “Word of the Day” was soul mate.)

Believe me, our 10-year partnership included plenty of “dark nights of the soul.” And days. They were as real as the good times and more important, I think. Life can be vexatious, and how you navigate those rubble-strewn, dangerous relationship roads matters. Difficult times demanded the most and the best of us. They reminded us that love wasn’t just about dancing in the kitchen while we cooked, it was also about finding our way out of a tense, resentful silence at dinner. We chose this commitment. The first of our six marriage vows was “to be fully responsible for the success of our life together, even in difficult times.” We had plenty of opportunities to make that vow real. Who doesn’t, really?

Jamie used to wish aloud we had found each other sooner. "We found each other exactly when we were supposed to," I would insist. I have this vague recollection of an early argument about this or something equally silly and irrevelant. The details are washed out, but I remember something I said to stop the fight in its tracks. (This memory is vivid, because that had never happened, and I don’t recall it happening again.)

“You’re always saying we found each other so late! Come on, Jamie, do we really have time for this kind of fight?” He stared at me for a moment, eyes wide, and then his expression transitioned from cloudy to clear. “You’re right. I’m sorry, baby. We really don’t have time for this.”

I’m not going to state the obvious here.

The point is, I don’t want to start idealizing my memories now that I’m in charge of our relationship history. That feels counterfeit. Our partnership was nothing more than two flawed human beings having a human experience, from the beautiful beginning until the bittersweet end. We both brought a lot of baggage to our marriage. What made us work was a willingness to help each other unpack and put things away, but often it got unpleasantly messy until we did. When I worried that the mess would obscure what really mattered, Jamie would insist that the discomfort of working it through was just as important as feeling the love and savoring the joy. He was right.

Of course I’d take the good times all over again, but I’d happily take the hard times, too. So I sing:

The good times,
The great times,
and the hard times all over again.

 Except for the watching him die of ALS part. I would never want us to do that all over again.

The most insistent advice I got after Jamie died was to take it slow, not to make any big life decisions for a year. It was good advice. But now that this year is behind me, I’m reminded of a story about a little girl who had been exhilarated about the thought of being old enough for kindergarten. As the big day approached, however, she became increasingly anxious and agitated. The night before school was to begin, she hysterically insisted to her parents she couldn’t possibly go. They were mystified. “But why?” they asked. “You were so excited about kindergarten.”

“Because I can’t read yet!” the youngster sobbed. For months, her parents had been concluding their bedtime reading with comments like, “When you go to kindergarten, you’ll be able to read these books all by yourself!” I get it. I still can’t imagine how to navigate life without Jamie, all by myself.

It helps to remember that life is a practice. I am still the strong, smart, independent woman Jamie fell in love with, only with added experience,  more wrinkles, and white hair. I can, I will, figure it out as I go along. This year of grief and the summer of love have given me plenty of opportunities to stay focused on the now. Gratitude reigns.

Being in Denver these past few months has spawned its fair share of happy-sad memories, and it’s also been a delightful distraction. Seeing Kadin, my little man, becoming an adult.  Watching 2-year-old Audie Rae using her words and asserting her indomitable toddler will. Welcoming a new life. When I look deep into baby Iris’ beautiful blue eyes and listen to her baby coos, I like to imagine she is telling me how she and Jamie passed each other along the way.

 “Well, Papa Jamie, I’m heading out to the world,” Iris tells him. “Wish me luck.”
“It will be awesome. You’ll be amazing,” Jamie replies, giving her one of his superlative hugs.
“I’m so glad I got to meet you. Give everyone my love.”

And the memories always linger on,
Oh my sweet James, I know I gotta move on
Yes, the memories will always linger on,
But my sweet James, I won’t stop singing your song.

Don’t look for me today. I’ll be in my cocoon somewhere. I’m thinking about finding a quiet, private spot on a Colorado mountain. I’ll take my ukulele, and I’ll sing what I now think of as “Jamie’s Song” (with sincere apologies and deep respect to Fred Stobaugh, who at 96 wrote the lyrics after his wife of 73 years died.)

You won’t hear me sing, but I hope you’ll feel me.

Because I couldn’t have done this without you.

MONI, MONI, MONI

“The most massive characters are seared with scars.

”

— Khalil Gibran

Cypress Homecare Solutions, the agency that rescued us during our care-giving crisis, sent Moni.

“I think you’ll like him,” said the woman who called to tell me who to expect. “He has a really good outlook.”

When I opened the door to him, I thought, “Seriously? This is not going to work.”

Moni is small, a few inches shorter than me, and lithe. Where most of our caregivers have been sturdy SUVs, he is a compact car. I could not imagine him picking Jamie up, much less transferring him from place to place. So I hovered as he did his work that first morning, breath held. Moni is amazingly strong. And competent. It was all good.

You know that cliché about how someone’s smile lights up a room? Moni could have inspired it. His smile never quite goes away. He shined it when he told us we were “in beddy, beddy good hands.”

During his first visit, he pointed to the Om pendant Jamie wears around his neck. “You know what that means?”  Yes. We practice yoga, we told him. We could tell he was delighted. Moni, who is 35, was born in Bhutan, a tiny country wedged between India, where his mother was born, and China, his father’s native country. “I am Hindu,” he told us that day. He sometimes sings us mantras, some of which we know from our yoga teachers.

A few days ago, at our wedding anniversary lunch, Jamie told Zak and me that he had a story to share. We leaned in to hear.

Jamie woke up that morning feeling overwhelmed. He was sick of being helpless, frustrated and depressed and whiny.

“Moni, I am a mess,” Jamie said, full of self-pity and on the verge of tears. “I am just a mess.”

But ... you have had a good life, yes? Moni asked.

“Oh, yes,” Jamie replied. “Yes, I’ve had a very good life.”

Not me, Moni said, still smiling. My life has been full of misery. I have had a very hard life. I have suffered.

Moni’s family left Bhutan in the 1990s, when the rulers began harassing, then expelling, an ethnic population called the Lhotshampa. His parents, fearing a violent revolution, fled with their two young sons. The violence never really materialized, but when they tried to return, the family was refused entry because Moni's parents were not Bhutanese citizens. The family spent 18 miserable years in refugee camps in Nepal and India. Eighteen years of extreme vulnerability. Constantly unsettled. Food scarcity reigned. Water, when it could be had, was unclean. Finding a sheltered place to sleep was a luxury.

I have suffered a lot, Moni told Jamie in his accented English. “My role was to suffer. Not suffering just for me, but for humanity.”

We are all actors, acting in a larger play, he continued. We each have a role. Sometimes we play only one, and sometimes we play many. And sometimes roles change.

“Do you know who Stephen Hawking is?” Moni asked. Jamie smiled and nodded. “He plays two roles. He is a warrior for ALS, and for people suffering with ALS. But he also is brilliant scientist and teacher for the world. He found black holes in space.

“You have roles, too," Moni continued. "You are father to many children. You were successful business man and a teacher. Now you are dying with ALS. Now your role is suffering. You do it for many people, for the world.”

Jamie let that soak in a moment. He suddenly felt less overwhelmed and depressed and whiny. Then he asked Moni: “What is your role now?”

“I know what it is like to suffer,” Moni said. “And now my role is joy. I bring joy to those who are suffering.”

CLINIC

“Through the hourglass I saw you, in time you slipped away
When the mirror crashed, I called you
and turned to hear you say: If only for today, I am unafraid
Take my breath away….”

Mama always told me not to look into the eyes of the sun, but Mama, that’s where the fun is.

ALS clinic at Barrows Neurological Clinic is a one-stop medical extravaganza. Every two or three months, we devote an entire afternoon seeing a neurologist, a physical and occupational therapist, a speech therapist, a respiratory therapist and if needed, people like “the wheelchair guy.”

With neither treatment nor cure for ALS, the doctor takes more of a supporting role in this cast (although he does write the all-important prescriptions). The headliner this time was Brandi, the respiratory therapist, who charts the even more important numbers that measure Jamie’s ability to breathe.

Her numbers provided specificity to what we already knew: Jamie’s respiration has taken a sharp and serious nosedive. Dr. Ortega didn’t need numbers to see the deterioration. He noticed immediately, by the way Jamie uses his body to breathe. You’d notice it, too.

Jamie can’t cough or sneeze. His wonderful, infectious laugh has disappeared. He is tethered to the BiPAP machine more frequently. He takes quick sips of air after three or four syllables, and some days he can barely muster the air to speak above a whisper. People draw close to catch what he’s saying.

Losing his ability to communicate — to converse — is by far the worst, the most terrifying scene in this play. Jamie can’t imagine himself in the world without engaging others, and conversations have been his sweet spot. He would rather pick up the phone and invite you to a verbal dance than correspond. He’s not a Luddite — he’s fine with email and texts. But those are methods for information delivery. Conversations are relationships. Connection. Satisfaction.

This dramatic turn of events has made for interesting conversation around here, including one that centered on his active resistance to taking prescribed narcotics.

Jamie lives in two places now — the wheelchair and the bed. He has long complained of aches and joint pain stemming from his inability to move his limbs. The doctor told us that a low dose of oxycodone would not, as Jamie feared, leave him in a vacant stupor. It would help him be more comfortable in his body, and also would help relieve some of the anxiety produced by what the brain feels as “air hunger.”

Still, he said “no” every time I suggested a dose.

As a child of the 60s, Jamie did his fair share of what he calls “better living through chemistry.” When drugs were illegal and forbidden, he enjoyed experimenting. Now that he could legally get pills to make him feel better, he stubbornly refused to take them. I didn’t get it. I was tired of fighting him. Was this just his “rebel” nature manifesting?

The ensuing conversation got so interesting that I turned on my recorder.

“Life is not always comfortable,” Jamie told me. “Why should death be?

“For me, it goes to the notion of pain and suffering, because they’re not the same thing,” he continued. “If I’m taking [painkillers] so I can move my shoulders, or so that my knees don’t ache and my feet don’t hurt, I get that. But in some ways, that is the only connection I have any longer to the pain of life. Everyone is so afraid of that pain. Everyone is so afraid of being uncomfortable.”

After a pause, he referenced a lyric from “Blinded by the Light.”

Mama always told me not to look into the eyes of the sun, but Mama, that’s where the fun is.

“Looking into the eyes of the sun is being able to look at things in their most honest and austere form,” Jamie said. “And that is where the excitement and the learning is. But it’s also painful. I’ve spent of my life trying to embrace that pain. It’s why people think I’m so edgy. Why would I expect to die any other way? Why would I want to die any other way?”

Knowing him the way I do, Jamie’s lines made sense to me. Doing things the hard way, and pushing through the pain and discomfort of that friction, leads to fire. In yoga, this is tapas. Enduring the fire means purification, strength, resilience. Our consulting work has been about encouraging people to draw closer to the fire, to stop backing away.

From the beginning of this ALS journey, Jamie has been determined to be aware and alive to his experience. But his comments started me wondering about the Buddhist notion of pain and suffering. Did he make a distinction between pain, which is inevitable, and suffering, which is optional?

“To reject painkillers because you see it as the easy way out, isn’t there also an element of choosing suffering there?” I asked.

Wasn’t it possible that by alleviating some of the physical pain — which has been extraordinary — he could be more present to what actively dying has to teach him? Without such physical discomfort, perhaps he would be more aware of the love that surrounds him, of the gifts and graces we are receiving along the way? Mightn’t it make him even more receptive to the greatest teacher we’ve ever had?

He was quiet for a moment. “Well, I guess I’ve thought if my knees and feet didn’t ache so much, or if I could sleep all night, that this emotional numbness would have to accompany that. And now I’m seeing that maybe it doesn’t have to. ” He began taking his medicine.

Just one year ago, Jamie was driving, walking, riding his bike. He puttered around the house, cleaned the kitchen after I cooked, petted Bodhi when he was in a lap-cat mood. In delight, he could unleash his beautiful guffaw. We could walk to our neighborhood restaurant holding hands.

And it was almost a year ago exactly that a mild, two-mile hike left Jamie so physically consumed — so out of breath — that he had to get a ride back to the place we were working. The harbinger.

The speed of this journey is, indeed, leaving us breathless.

HI, BABY!

When you were born you cried, and the world rejoiced.
Live your life so that when you die, the world cries,
and you rejoice.  
~ Indian proverb

Among the slew of family visitors we have recently enjoyed (oh, happy exhaustion!) was Audie Rae, our first granddaughter. She was born on June 25, 20 days after the official ALS diagnosis. We were in Denver to behold her entrance into the world, cuddle her sweet newborn body and witness her first few weeks of life. What a delectable distraction her birth provided.

The timing of Audie’s birth created a metaphor that is so obvious it borders on trite. The arcs of two lives intersecting — one ascending as the other descends.

As Audie learns to manipulate her tiny, long fingers, she grabs greedily at anything within reach. Jamie’s weak, curling fingers crawl up the wheelchair armrest, and it’s increasingly difficult to manipulate the controller. Audie snatches the spoon from my fingers so she can feed herself. Jamie must be fed. She babbles and coos, trying to emulate what she hears. Jamie is losing his ability to speak. We feel the mystery and excitement of Audie’s beginning. Jamie’s passage, equally mysterious, approaches its inevitable conclusion.

The baby and the paralyzed man, utterly dependent on others.

We have been all about dependence lately. All illusions of control have been abandoned, especially as our carefully constructed cadre of night caregivers has imploded.

It is not easy to find caregivers strong enough to transfer Jamie from wheelchair to bed to wheelchair to toilet to shower chair and back again. We’ve needed men. Male caregivers, or CNAs as they’re called, are uncommon enough, but male caregivers willing to work nights? Almost as rare as an ALS timeline like Stephen Hawking’s.

Thanks to our friends at Palliative Services, we have scored big. The first person sent out was Richard, who started doing early morning shifts in February, back when I could still handle getting Jamie into bed by myself. Compassionate and committed, reliable and good-natured, Richard has been our rock. When he could see we needed additional help, he began working night shifts, putting Jamie to bed, tending to his nightly needs, and doing his morning routine. When we needed to add shifts, he did double duty to train the new guys. When Jamie has an issue, he is determined to solve it. “It’s not a hospice thing,” he tells us, “it’s a Richard thing.” It is impossible to adequately express how above and beyond he has gone for us.

It wasn’t long before he felt like family. I could go to bed at night and sleep peacefully, knowing Richard had it covered. And then he was in a car accident. (He’s OK, we’re happy and relieved to say, but out of commission for awhile.)

We had called him during a mini-crisis — Jamie needed to use the bathroom, and he can’t do that without a transfer. In a panic about how to get him on the toilet, I called the palliative services hotline. They got a message to Richard, and a few minutes later he called us — from the emergency room. Because he is Richard, he apologized profusely. Because he’d been in an accident. And was injured. (Seriously, Richard, take care of yourself now!)

Luckily, Audie’s daddy was here to help with Jamie. We got him where he needed to go just in time, but getting back to the wheelchair required the help of Phoenix’s finest. We called the non-emergency 911, again, for a lift assist. That was traumatic enough, but as we recovered, the real panic set in. With Richard out of commission, we had four night shifts to cover.

Thanks to our amazing community, we managed to get through the weekend with help from a fantastic agency, which was recommended by a friend. It found us a male caregiver to work nights on the weekend. A miracle. Then on Monday, we discovered another of our stalwart caregivers also had injured himself over the weekend. Our carefully constructed weekly care plan now had six gaping holes.

Since then, we’ve been scrambling day to day, with lots of help from lots of people. So far, Jamie hasn’t had to spend the night in a wheelchair, an option that was being seriously considered for awhile. Tania, our palliative services nurse, blew up her afternoon yesterday working to get us assistance, along with several other good folk at Hospice of the Valley. Thanks to the ALS Association’s Arizona Chapter, we now have a Hoyer lift, which will allow me to do Jamie's transfers if needed and will broaden the pool of potential caregivers.

We are being taken care of, and we are grateful for all the people who are scrambling to do it. Although we feel as exposed as newborns (maybe more so, assuming infants aren’t conscious of how precarious their existence is), we also feel the wonder of being held by so many people (even though we’re not nearly as adorable as Audie Rae).

Love,
Maren & Jamie