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

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