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.