THE ILLUSION

Time isn’t precious at all, because it is an illusion. The more you are focused on time —past and future — the more you miss the Now, the most precious thing there is.

~ Eckhart Tolle, The Power of Now

Of all the resources we have discovered since last June’s diagnosis, one of the most invaluable has been the Palliative Services division of Hospice of the Valley. Jamie and I have a long relationship with this fine organization. When it was clear that my mom’s life could not be sustained without constant medical intervention, we turned to Hospice of the Valley. Its counseling services helped me work through my grief after my parents’ died a month apart four years ago. We have dear friends who work there. Jamie even did consulting for HOV in the 1990s.

The Palliative Services is a few steps back from actual hospice. It comes with a 24-hour hotline to call with questions or to ask for a nurse to come by. When we signed up in December, we were assigned a social worker, Sonya, and a nurse, Tania. The Palliative Twins. We met with them face-to-face soon after we signed on. They call to check on us from time to time, though mostly, we play rousing games of phone tag. We haven’t felt an urgent need for their services, but as we’ve been crawling along on the dark path that is ALS, Sonya and Tania were like twinkling lights in the distance. We knew those lights were easy to get to. It was comfort enough.

Recently Nurse Tania left a message suggesting it was time for another home visit. After our typical game of tag, she finally caught me with phone in hand at the end of a long day. “How’s Jamie doing?” she asked. “What’s going on with you guys?”

So I told her: Jamie can’t get any good sleep. He’s uncomfortable in his body. He can no longer cough or sneeze. His appetite is waning. His arms no longer work, and his legs are swollen. His hands are going fast. Breathing is deteriorating. Talking is more difficult. We’re now the owners of two new medical devices: a cough-assist machine and a shiny new BiPAP. I didn’t say the words, but I think she heard them in my voice: “I am worried. And scared.”

Tania was silent for a moment,  then said: “Wow. Those are big changes from the last time I saw him.”

Once you get a diagnosis like ALS, time takes on a surreal dimension. Or perhaps better said, no dimension at all. This human construct of quantifying the revolution of the earth and measuring its journey around the sun is a conceit and a colossal joke. Time is not rigid like a ruler, but more like the liquid in a measuring cup, which can be dumped with one quick flick of the wrist or poured out in an excruciating slow trickle.

It’s like a piece of complex music. On paper, the measures are clearly delineated. Tempo is suggested. Allegro. Andante. Adagio. We hover at the edge of the score, clutching our instruments, tense, completely at the mercy of a crazed, unpredictable conductor.  Some bars contain so many notes that mustering the required energy, breath and dexterity seems impossible. (How many errands can I cram into the four-hour window that the caregiver is here?) Prestissimo!

We want to slow those quiet morning hours after the night caregiver has gone and before the chorus of daily activities has unleashed its greedy howl. It’s our time for coffee and conversations both pragmatic and profound. But the crack of the conductor’s baton will not be denied. Andante!

Those damn abductor wheelchair pads that were prescribed to Jamie more than SIX WEEKS AGO still have not materialized. We endure the cacophony of bureaucratic excuses that inevitably is followed by the hush of unreturned phone calls. Hold your breath. Lento. Larghissimo!

Wait, what? It’s already time for bed?

When was the last time Tania saw Jamie? December. Just before the holidays. Back when he had upper body strength. When he could stabilize his legs and use his arms enough that I could help him into bed. When he could still feed himself. When he could use the computer, and work, and talk on the phone for hours without becoming exhausted. When I didn't have freak outs every time I left him home alone. When he could scratch his own face and push his glasses up on his nose. When we lived entire days and nights at home by ourselves, just Jamie and me.

“Do you think he’s ready for hospice?” Tania asked.

My instinctive reaction, while silent, was emphatically emotional. What a ridiculous question. Of course not!

But then the rational mind kicked in. What does “ready for hospice” even mean? Technically, I know it means “six months out.” But what criteria mark the time of that arbitrary measure? I had no idea. Tania suggested a home visit from Dr. Terry.

So last week we had a visit from Dr. Terry. We immediately liked and trusted him. He was knowledgeable and experienced, direct and compassionate. No spoonful of sugar coated his descriptions of what we should expect, how the disease will affect the body and mind. He explained what hospice will do for us. How we will have the support we need, and the control we want. Unvarnished information, delivered just the way we like it.

The trajectory of this disease is completely predictable. However, no surprise here, the time line is not. Beginning hospice is a delicate decision, Dr. Terry said. You don’t want to enter too soon — Medicare regulations and all that. Neither do you want to wait too long and not benefit from the full hospice offer.

But… no, Dr. Terry told us. Jamie is not ready for hospice. Not yet.

We have no idea how the word “yet” is measured. Then again, time is not, nor has it ever been, our main focus.

Today, we are enjoying the company of Jamie’s sister, Jan, and his brother-in-law, Stelios, who are visiting from Greece. Later this afternoon, we will visit with Jeanine, who has driven over from California for some family time. Tonight, we will exclaim over how much Audie Rae has grown in two months— she arrives tonight with her parents, Sonnet and Chris.

We have right now. And we are constantly being reminded that "right now" is the only time we ever have.

Love,
Maren & Jamie

OF CATS, CONSULTING & (DIFFICULT) CONVERSATIONS

It’s been a strange couple of weeks at Casa Showkeir, although strange becomes normal when you are dwelling in the space of dying.)

Here are the headlines, in case that is all you have time for:

   Conversation “Experts” Fail at Communication in Cat Caper

   Consulting Career Ends In A Room Filled with Dead Animals

   Dictator Rules: Jamie Won’t Be Home Alone. Ever

The Cat Caper
Some of you might have seen my facebook plea for a temporary home for our beloved Bodhi Qat, along with my Emily Litella update a few hours later: “Never Mind.” 

Bodhi is a personable and social cat who has periodic manic episodes. Jamie swears that Bodhi knows he can’t move and purposely indulges in “bad” behavior to taunt him. Jamie complained that Bodhi made his face itch (a big problem when he can no longer move his arm to scratch.) The Qat’s night roamings, including jump shots onto the hospital bed and dresser, interrupted his sleep. His tearing about the house disturbed the caregivers. After a particularly wild Qat night, I arose early and tearfully began searching for a foster home. I even had the perfect person lined up, thanks to my long-time buddy Wes.

But when I told Jamie, he was upset. Extremely upset. A difficult conversation ensued (and yes, it was authentic). I won’t bore you with details, but let's just say we both learned a few things.

Him: My intentions were pure, and I was trying to help.
Me: Don’t solve Jamie’s “problems” without discussing with him first.
Me: Jamie is way more attached to Bodhi than he sometimes lets on.
Him: Quit complaining so freaking much.
Us: We both adore Bodhi. We want him here, where he belongs.

Saying Good-bye to a Consulting Career
We thought we'd crossed the consulting finish line in November after we facilitated a retreat for the Virginia Piper Trust Fellows. Then the U.S. Forest Service called. They needed help. I thought we should say no. Jamie wanted to say yes. After several weeks of back and forth, we found the perfect solution: We would partner with our dear friend Christine Whitney-Sanchez to pull it off.

Our USFS contact, Kathy, arranged for the retreat to be here, so we didn’t have to travel. The Bass Pro Shop donated meeting space. (It was like Disneyland for people who like to shoot, hunt, camp, fish, hike — all that outdoorsy stuff. The room we worked in was riddled with animal “trophies.”  I decided to imagine they had all lived happy, full lives and died naturally in their sleep, surrounded by loved ones. As a meat eater, I can’t in good conscience be anti-hunting. On the other hand, hunting for sport…. well, if that’s your thing, I highly recommend Richard Connell’s short story titled “The Most Dangerous Game.” It’s a good read and a brilliant literary example of irony – the real kind, not Alannis Morrisette’s bastardization of the term.) 

I digress.

We were there for half of the three days, and Christine capably navigated the rest. It was good work. Great work. And when it came time to say good-bye, Jamie choked up. It was one of those emotional silences that can be hard to lean into. Someone spoke just to break the silence.

Jamie’s emotion wasn’t a surprise, but I was taken aback when I began to say adios, and suddenly, I couldn’t. I also choked up. It was another example of what has become our new normal — holding two and seemingly opposite emotions at the same time: Disappointment and relief. Satisfaction and sadness. Heartbreak and joy.

The Dictator Scores!
We’ve had a lot of back and forth about whether Jamie should be at home alone. I get why it’s a difficult issue: He enjoys his solitude and independence. And he gets my concern: Worry clings to me every time I leave the house without him.

The debate ended on Monday morning. I was in the shower, getting ready to meet Skyler for a bit of breakfast. Jamie had an appointment with the wheelchair technician, so he planned to stay home. When I emerged from the shower, I could hear him calling me, barely. I ran, dripping, to see what was going on. He had tipped sideways and forward in his chair and, unable to sit himself up, was gasping for air. After I got him upright, he was pale and shaken. We put him on the BiPAP machine so he could, quite literally, catch his breath. (Oh yeah, he uses a BiPAP now.)

So there was that phenomenon again: Frightened (he could have died!) and relieved (he was OK). Furious (Why didn't he listen to me sooner? What if I'd already left to meet Sky?) And gratified (He was listening now. I hadn't).

After Jamie’s BiPAP pranayama (yogis will get it), the dictator Jamie lives with issued the decree: Never again would he remain home alone. Ever. Ever. Ever. And maybe for the first time — ever — Jamie did not argue.

So now a new cast of characters will be flitting in and out of Casa Showkeir. For this, we are pleased. And anxious. And sad. And grateful.

Love,
Maren & Jamie

THE HONORING CEREMONY

“The way you get meaning in your life is to devote yourself to loving others, devote yourself to your community and devote yourself to something that gives you purpose and meaning.”

—Morrie Schwartz, Tuesdays With Morrie

In 1999, I was one of the gazillions who read Tuesdays With Morrie, Mitch Albom’s book about Morrie Schwartz, his favorite professor at Brandeis University who died of ALS. Reading about the disease was horrifying. It struck me as incomprehensibly cruel that the disease devastates the body completely, while leaving the mind completely clear to witness its destruction.

But the book is much more about living than dying, and provides a sort of instruction manual for our journey. In one chapter, Morrie returns from his dear friend Irv’s funeral service saying: “What a waste. All those people saying all those wonderful things, and Irv never got to hear any of it.”  Morrie wants to hear it — he throws his own memorial service.

It’s too bad Morrie didn’t have a friend like Roberto.

We met Roberto Vargas in 2008 while attending our first Berrett-Koehler authors retreat in New Mexico. We were drawn to him instantly. He presided over beautiful opening and closing ceremonies and contributed a quiet, grounded presence throughout the weekend. We had deep conversations, and at the end of the retreat, he gave us one of his “talking sticks.” In his tradition, the person with the talking stick gets full attention. If you don’t have the stick, you listen closely to the person who does. It's always been on prominent display in our home. Our friendship ripened as we attended retreats together over the years.

Roberto, who lives in California and is the author of Family Activism, called us in January. He had work scheduled in Tucson in early February. Would we be interested in having him convene an “Honoring Ceremony” for Jamie? Yes! Yes!! A thousand times YES!

We had to organize quickly. By happy coincidence, Jamie’s nephew, Stamos, and his girlfriend, Maya, had planned a visit that weekend. Two long-time friends, Dick and Emily Axelrod, would also be in town. We arranged for Zak to come from Boston and Jeanine from Los Angeles. My sisters Kathy and Laura attended, along with many dear friends from our diverse communities. We rigged up a Skype session so that Jamie’s sister, Jan, could listen in from Greece. Sonnet and Skyler couldn’t be here, so they wrote tributes to be read and sent items for the “inspiration table,” which was covered with talismans and artifacts representing people's relationships with Jamie. The only imperfection was that lack of time and limited space meant we couldn’t include, and be physically surrounded by, ALL the people we love. We held them in our hearts.

On Jan. 31, we created a large circle in the social room of our condominium. Roberto and his beautiful wife, Rebecca, used sage smoke and a feather for a private spiritual cleansing with Jamie and me, and then we joined the large group. With Roberto as our guide, the ceremony began.

All those wonderful things people say about people after they die? Jamie got to hear them. He listened to the kinds of stories people tell at memorial services. Many brought us to tears, and just as many made us laugh out loud. We listened to friends from every facet of our lives describe how Jamie’s life had made a positive difference in theirs. We were immersed in joy and love, of course, but also something deeper and more profound. A sparkling, charged energy that exists within us, connects us, and extends outward to places we can neither see nor comprehend.

In truth, that connection has become brighter and more continually present since Jamie’s diagnosis in June. The Honoring Ceremony was rich and cherished, and a day doesn’t pass that Jamie or I don’t receive a phone call, a note, a message or a thoughtful gesture that reminds us we are loved and held. We are discovering, as Morrie Schwartz did, that when we are awake to the gifts and graces that accompany dying, we are truly living. 

Our lives matter, our communities hold us, and love infuses both with meaning and purpose. We won’t take that for granted.  We hope you won’t either.

Love,
Maren & Jamie

JAMIE'S ALS ADVENTURE

We'd suspected for months.  On June 5, 2014, the suspicion crystallized into reality.  As he backed himself up against the wall, Dr. Erik Ortega said the words that would upend our lives: "We've ruled out everything else. It's ALS."

It was a devastating, icy cold gut punch.

On June 5, Jamie walked with a slight limp and had a weak left shoulder. On June 7, he helped pack and load our little Baja Subaru and drove all the way to Denver, where we intended to spend two months to help our daughter and her husband, Sonnet and Chris Aguirre, welcome their first baby, our granddaughter Audie Rae, born on June 25.  With the help of the kids, Jamie unloaded our stuff into the little apartment where we would live in June and July. In the next several days, he installed two closet systems in the Aguirre house.

Walking with a cane came in early July. A couple of weeks later, Jamie was unable to help with packing, cleaning or loading when it was time to return to Phoenix. But he drove the truck from Denver to Santa Fe.

While traveling in August to visit family and friends, he occasionally used a push wheelchair. Then his cousin Tom Pike introduced him to a "rollator," which helped him more easily walk. He still could drive a car. We sold the Subaru and purchased a mobility van.

In September, he was using a motorized wheelchair most of the time. By October, he could no longer drive and the motorized wheelchair became a full-time fixture. Jamie could transfer from the wheelchair to a couch or chair until sometime in November, when his only two options were to sit in the wheelchair or lie on the bed.

By December, it became harder for him to lift a fork or spoon to his mouth.

It's January, and he has to be fed by someone else. He drinks through a straw. It has become almost impossible to type. His cough has become puny. He needs help with almost every aspect of daily living.

His mind is as sharp as it ever has been. He is entirely present, and he still loves to talk.

That is where we are today. As Jamie often says, "This was my life before the diagnosis. This is my life after the diagnosis."

As his ability to communicate narrows, and as my time and energy is increasingly invested in caring for him, we are creating this journal as a way to keep those who are interested informed. We definitely want to continue the conversation, and this will make it easier. I'll be writing periodic journal updates to give you a glimpse of our lives and update you about Jamie'scondition.

We are so very grateful for the friends and family who have surrounded us with love, encouragement and support. More grateful than we can express. Please know we always welcome your questions and comments, here or on facebook. We welcome email, too — it just might take us a little longer to respond.

Love,
Maren & Jamie

GO ON, GET OLD!

Today is my birthday, and I have a birthday wish for you: Get old.

I really, truly hope you get old. Really old. Worn out, exceeding expectations, wrinkled-and-wise old.

This is on my mind not only because it is my birthday, but because lately I've heard people telling those who are much younger than they are "Don't get old!"

No one means it literally.. That would mean early death and heartbreak. I get that they say it as a gentle and humorous way of letting off steam about their own aching joints, memory lapses, and muscles that motor more slowly than they used to. That's happening to me, too.

Even so, I want to get OLD! And I want that for my children, and their children and all my loved ones my friends. It's a gift denied to so many.

There's no denying that with age comes loss. But then again, youth has its own challenges. If you're lucky enough to get old,  you've a survivor. You've learned thingsIf you're old, you have gained far more than you lost. And in the (literal) end, your exit from this earth is completely out of your control anyway.

This year, my gift to myself is to strive harder to be present to my life. What better gift? I want to savor every moment with the people I hold dear. I want to connect deeply with people so they that become dear to me. I want to recognize life's challenges for what they are — momentary pain that provide opportunities for a little humility, learning. and personal growth. I want to immerse myself in love and gratitude. 

I want to get old without apology.

When I blow out my birthday candles, I will wish that for you, too, no matter what your age. I will wish for you a rich life filled with sparkling, mindful moments, and enough challenges to make you grateful for the good times.

And I will hold the vision of you and I getting old.  Really, really old.

EASY LOVING

Who is easiest for you to love?

Erich Schiffmann, an internationally renowned master yoga teacher, posed the question during a weekend intensive I attended a few months ago. He quickly refined the question: It was not about who do you love the most. It is not about for whom would you do anything. Nor for whom you would die protecting.

Who is easiest for you to love?

My mind immediately snapped to the obvious answers. Well, my family, of course! My husband, my children, my grandchildren. Without a doubt they are the ones I love the most. They occupy a vast and prominent landscape in my emotional territory. Their place in my heart is assured. And though I hope I’m never put to the test, I would do anything to protect them.

But... easiest to love? Honestly? Not always. Like most human relationships, my love for family is layered with expectations — mine and theirs. Though it is usually subtle and subconscious, I struggle when they don’t do what I want them to do, or see things in the way I think they should.  I judge. We argue. I expect them to be who I think they should be, and I get disappointed when they aren’t.

My love for my family is boundless. Our tethering and the profound connection we share is bedrock. No doubt about that.

But easiest to love? Well, that would have to be Bodhi Qat.

Schiffmann describes love as the willingness to see and accept what is real in another. In other words,  truly loving someone means saying, “I see you. And I willingly choose to recognize and honor what is real and true about you.” With complete acceptance. Without expectations.

I see Bodhi. I never expect him to be anything but a cat.

When he begins to sharpen his claws on the chair in the second bedroom, I don’t explode in anger because he isn’t taking better care of the furniture. Why would I expect a cat to care about furniture? I direct him to his scratching post or trim his claws.

When he jumps on my head at 4:30 a.m. every morning, I don’t simmer with resentment because he won’t let me sleep. That’s the time he wakes up. He wants to eat, and that’s how he lets me know. Bodhi either gets fed, or I put him out and shut the door until I’m ready to feed him. Have I trained him to keep off the kitchen counters and dining room table? I have, while acknowledging that it's his nature to jump up there.

Never have I stewed over why Bodhi doesn’t sleep less and work more. When he bites my elbow while I’m trying to work, I don’t take it personally. I know he wants to play, and I throw him a toy mouse.  I never expect him to take my advice, follow my instructions, pay more attention to me, or help around the house. I never expect him to be anything but the feline creature he is.

Bodhi is easy to love because I see that a cat is all he can be.

Since that weekend, I’ve thought a lot about why it is so hard to truly see people in the same way I see Bodhi. Why do I let ego block my ability to see and recognize and honor what is real about people — the ones I hold most dear and those who pass fleetingly through my life? Why do I choose to cling to expectations and slog through a swamp of disappointment when they don’t get met? Why do I expect them to take care of the furniture, let me sleep, take my advice, and behave the way I think they should?  

Learning to love people in this way is a practice. Awareness is the first step. With intention, action, and practice, I hope some day to learn to see people as they are, not through the lens of my expectations. I want to learn to love people in the way I love Bodhi. 

TRUTH WITHOUT APOLOGY

Friend and colleague Mark Levy, author of Accidental Genius  agreed to give us feedback onour most recent newsletter, which included advice for “A Better Way to Deliver Difficult News.”  “That advice is refreshingly harsh,” he told us

Harsh? Ouch! Sometimes the truth DOES hurt.

We shouldn’t have been surprised. Others have been known to describe our message that way, only without the “refreshingly” modifier.

As we continued to talk, Mark backpedaled a bit, saying a better description would have been “unapologetically honest.”  He said he understood why asking people to “live the experience of truth” at work would be a concept people might turn from.

“It’s not like you're telling people they can get anything they want if they just visualize,” Mark said. “Part of the reason I said ‘unapologetically honest’ is because I am always apologizing for telling the truth.”

What spurs the impulse to apologize for being honest, we wondered. Then we had a revelation — people never apologize for telling the truth unless they are uncomfortable telling it, or they think it is something that might be difficult to hear.

When we talk to people about the rewards of telling the truth as a business practice, it is common for reactions to include fear, suspicion, and skepticism. In the context of most organizations, “telling the truth” almost always has a negative connotation.

If you start a conversation with “Can I tell you the truth?” what usually happens? Typically,  a step back. People brace themselves. They look for something to hold onto so the force of hearing something unpleasant won’t knock them flat.

How have we managed to create organizations where “telling the truth” is seen as a radical act? Why do people consider it as unpleasant as administering a dose of castor oil?

Nobody requests permission to tell the truth (or apologizes for it) if the message is: “I think you’re a terrific leader.” They don’t think twice about delivering a truthful “I really appreciate all the extra hours you’ve been putting in to make this project successful.”

But when the truth is difficult — “things aren’t going so well” or “we need more from you” — people are reluctant to deliver it. And that raises another difficult issue: People are often equally unwilling to hear the truth.

Helping people understand the business reasons for delivering difficult truths helps develop organizations where people can tell each other the truth.  Investing equal energy in coaching people to hear the truth — even if it doesn’t always feel good — fosters reflection, self-awareness and resiliency

NOTE: We’d really like to hear your stories about truth telling. Relate a time when telling the truth felt too risky, and how it turned out. Or an example of when you told the truth even in the face of your fear. What happened?

A GOOD TRY WORKS EVEN WHEN IT DOESN'T

The first newspaper I worked for as a freshly minted journalist had a monthly bulletin that doled out kudos and critiques to the writers and editors.

We would applaudcolleagues for snappy headlines, compelling writing, and beating the competition on a hot news story.  The staff wasinvited to nominate the best news and feature articles, and the final winners were chosen by a rotating committee. This also helped shine a light on the unsung heroes of the copy desk, which highlightedmistakes caught before our readers ever saw them in print, and helped us learn what not to do again. The mistakes that did get through weren't ignored, nor were other areas that needed improvement. Everyone was encouraged to contribute.

One of the monthly “awards” I have learned to particularly appreciate over the years was called The Good Try that Didn’t Work.

Our editor, Max Jennings, believed passionately in helping people on staff try something different. Whether we were crafting a story, photographing a news event, or designing a page, Max didn’t want us to be afraid to butt our heads against perceived boundaries. He didn't believe in playing it safe.

 One of his favorite sayings was, “If it ain’t broke, let’s break it so we can fix it.” So the Good Try That Didn't Work was a way to celebrate attempts to push beyond our comfort zones, even when those attempts fell flat. His influence fostered one of the most dynamic, creative, passionate organizations I have ever worked in.

I was reminded of this when I saw that Seth Godin had released a book called Poke the Box.

In a Q&A published on his Amazon book page, he says that conformity once was crucial to success, but compliance has become a killer in today’s competitive world. “We need to be nudged away from conformity and toward ingenuity. Even if we fail … we learn what not to do by experience and doing the new.”

So take the initiative to try something completely different. Maybe, if you're lucky, it will be a mistake and you'llhave a reason to celebrate and learn.