Tuesday, December 18, 2012

Don't Wait


For the past year and a half I have worked with Zen Hospice Project, an organization that trains volunteer caregivers with a background in meditation to serve at the bedside of those who are dying.

One of the precepts we learn during our training to act from while at the bedside is the phrase, “Don’t Wait”. As you can imagine, when it comes to death & dying, the phrase “Don’t Wait” can have many meanings. I wanted to share with you today how “Don’t Wait” magically appeared in the final weeks with my uncle, Roy.

When Uncle Roy arrived in the ICU at Kaiser Oakland, he was prepared. Not in the sense that he knew he would end up there, but in the sense that he and my aunt Kit had their things in order. He had
his advance directive, he knew – and spoke openly about – his desire to not fight nature’s course when it came to his death, and all the necessary papers
regarding life & death had been signed and dated.

This happens in many ICUs across this land, but I’m not sure Roy, or any of us, knew that myriad shades of gray come to us when a life is on the line. Questions regarding the possibilities of necessary procedures to sustain his life flooded his room: intubation, shocking the heart back in the case of another heart attack, whether to take certain medications on top of other medications to treat ongoing disease …these were the questions that hit Roy and Kit within the space of moments, hours, and days. These questions hadn’t been check boxes on the paperwork they had already done together.

I’ll note that the ICU is not a restful place. In fact, it’s the antitheses of a place of healing. That isn’t to say that incredible work is not done in the ICU—it is—and among the nurses and doctors that helped Roy during that time their care was superb. But when faced with the complexities of one’s life in a moment, with the beeps and pokes and prods—often at all hours of the night—made it a challenging place to hold a clear mind to make some of life’s most contemplative decisions.

Yet Uncle Roy faced these challenges each time they arrived.

One afternoon while I was visiting, the doctors came in to go over this “checklist” - if you will – of the gray areas. To clarify the treatments that Roy was willing—or not willing—to do. At one point Roy turned to Kit, then to me, and he said,  “What do you think I should do?”

Here was a man who followed his convictions on how he wanted to play out his life, yet he was concerned for his loved ones if he made the choice to go home to hospice. He had worked hard, had earned himself a beautiful life with Kit, and was grateful for all that he had accomplished for himself and for those who had shared his life with him.

And I’m certain this was a difficult moment for Kit. In fact, just by being in the room I knew that it was. But I appreciated Roy’s ability to face the questions. To ask his loved ones in the room for our opinions and not wait until an emergency might happen where his voice could not be heard.

And I felt that my job—as a hospice caregiver in that moment—was to hold two spaces: one for Uncle Roy and his desire to do what he felt was best for himself and for his life, and the other for Aunt Kit and her desire to keep her husband with her a bit longer. Luckily, mutual respect was a precept in their marriage and so the decision was eventually made to respect Roy’s wishes to leave the ICU and rest in the comfort of their home. Roy didn’t wait—he knew what he wanted—and he moved through this process with great care and compassion for both himself and for Kit.

He moved back to their home to Courageous Court.

The last night I had with Roy was on a Thursday night, two nights before he passed. I sat eating soup at his bedside and thought some more about “Don’t Wait”.  My husband, Wolf, and I had to fly out the next morning for the memorial service of the unfortunate death the week before of my brother-in-law.

I told Uncle Roy simply that we had to leave the next morning to see my family for Thanksgiving; I didn’t bother him with the details. He held my hand on his right, and the hand of his son, Sean’s, on his left.  We watched basketball and Wolf asked Roy for future life advice. Every so often I would say to him, “Uncle Roy, you seem tired, we should probably get going soon.” And he would squeeze my hand and say, “But Wolf hasn’t finished his soup yet.”

There he was again, considering the care for others.

I’ve seen this behavior many times in my hospice work, where patients don’t want anyone to leave, they have a lot of energy and chat for hours, but I only realized these details after the fact: that during that night, Uncle Roy was preparing for his next journey.

I knew I couldn’t wait. I knew it was possible that when I returned in ten days Uncle Roy may not be here. And I have a policy to squeeze every hospice patient I know before I leave them just in case. So on a commercial break during the basketball game with the TV on mute, I told Uncle Roy everything I needed to say. I told him how much I loved him, and that he and Kit had shown me what a marriage could actually be, and that he showed me how to choose a good man to be my husband. I had learned so many wonderful things from Roy and I told him I was grateful that he showed me the way. We cried, I kissed him, Wolf finished his soup – and on Roy’s urging a little dessert – and we left. Two days later Uncle Roy passed away in the arms of the woman who helped co-create his beautiful life.

It sounds like a simple story; it wasn’t. There were home health aides to navigate and moments of grasping and letting go. But what struck me about this beautiful life – and death – is that Roy – and Kit – met it head on. They had signed everything that needed to be signed – they had said everything that needed to be said – and thankfully, they could then put aside the “what ifs”, and the “I should haves”, that many people grieve long after those they love have passed.

Kit mailed me an article that San Francisco Chronicle columnist, John Carroll, wrote back in 2007. What fascinated me was that I received it in the mail just one day before Uncle Roy went into the ICU. This last part of the column sounds like John Carroll’s version of “Don’t Wait”. He writes:

“But here’s what I’m thinking about: It’s not too late. Some people have died, but others live on. They are waiting for our phone calls. Maybe they don’t even understand that they’re waiting, but we know better. They will want to hear what we have to say. Even if they reject what we have to say, they will want to hear it. Because later on, they will remember the words, and meditate on them, and then maybe they’ll make their own phone calls, and the whole grace thing will go around the world again, chasing the demons.”

Don’t wait.

Wednesday, August 22, 2012

A Beautiful Day To Die


Addiction. Softening. Compassion for the alcoholic. Led Zeppelin. These are my life's realities, its awakenings, and the American rock legend that touched my summer.

I'll start by saying that It's rare that I write about the specifics of my hospice work, mainly because I respect the HIPAA laws that keep a protective boundary around the patient. But I believe that I am being of service when I share my learnings with a society that is deficient around death. I also feel that synchronicities in life can create a memorable death that is worthy of being shared.

The weather on this summer day was magically warm. Not a leaf fluttered as San Francisco's summer winds stayed off the coast. Nature's colors were saturated to their full potential and conversations carried though screenless windows hanging in the hot air to be heard. As the resident birds bathed in the bird bath on the back deck of Zen Hospice Project's Guest House, I turned to our Volunteer Manager and smiled, "What a beautiful day to die."

Over the weekend I had received an email that Princess, our five-month long resident, was nearing her end. She would possibly become a "coroner's case" if we didn't raise the funds it would cost to cremate her. She was estranged from her mother and young sons, from the father of her children, and her boyfriend caught in the web of his own addiction who no longer paid her visits. I read the plea for her fundraising on my phone and found myself more focused on the miracle that Princess was actually still alive. One nurse had explained to me that since Princess was only in her early thirties, her heart would probably keep beating even while her organs failed. I was sitting next to my father on his 70th birthday reading this plea for Princess, and when he saw my tears he asked what was wrong. I shared a brief description of Princess while he hung his head.

"Well, I'll write a check for $100," he said. I looked up at him in awe. A complete stranger who was willing to give. "Everyone deserves to die knowing they were loved," he said.

Princess was dying from the complications of alcoholism. Doctors call it cirrhosis. But what I've learned in 12-Step work, Princess was dying from a "spiritual malady," one that had her swollen to three times her normal size. During my weekly afternoon routine it would take two volunteers and two nurses to turn her for bed baths. Every Wednesday at 4PM I could barely lift one of her legs to rearrange the three pillows it took to support each calf and foot. Her edema—the swelling of the body—caused her such pain that I witnessed for the first time in my hospice work that a patient could completely separate herself from her body.

Princess was also a total kick. She was forthright and honest, incredibly smart, and had a great sense of humor. Her charm and wit reeled me in to her cause. These were her good qualities—or character assets as they are called in 12-Step—which also happen to be common assets among addicts. But these assets didn't surface in Princess right away. She was abused every which way during her short life, and so Princess had no idea how to ask for what she needed. Nor did she have the ability to actually believe that people—even strangers—would serve her when she had nothing to give them in return.

The first time I came to her room to ask her order for dinner she demanded I fetch her a Tombstone pizza with pepporoni and onions. I struggled with the restaurant quality range in a Buddhist kitchen that cooks whatever the residents want (including meat), but leans towards fresh, organic ingredients. I laughed at myself for burning her Tombstone crust, but I had sliced some onions myself and placed them mindfully around the pepporoni. Princess didn't even notice the crust, ate the whole personal pizza, and then cracked open another can of PBR. "Delicious," she sighed letting out a belch. In her final weeks her demands lightened, she even became specific. "I'd like vanilla ice cream with chocolate sauce, and a glass filled halfway with ice. But don't make the glass of ice right away. Wait a little bit so that the ice doesn't melt before it gets up here."

"Okay," I said. "anything else?"

"No, that's it." I left the room.

"Thank you!" she screamed from her bed as I made my way down the hall.

When I walked into Zen Hospice on that beautiful day I saw the two nurses, Candie & Grace, who had tended to Princess in those final months of her life. They smiled and giggled, commenting on the local news team who had been in the house to do a news story during the time that Princess died. Candie & Grace were the nursing duo who had bathed Princess every week, who had tended to her bed sores and her split, bleeding skin. They coined her Princess and took the lead on their remarkable, tender care. Princess had told Candie & Grace which dress she wanted to be dressed in after she passed and that she wanted the two of them in the room when her time came to go.

Candie & Grace began their death tale, a common experience among staff and volunteers at this mindful house for the dying. They talked about the volunteer who had sat with Princess while her breath labored. Then they shared how that volunteer had been sitting there for a few hours and finally whispered, "I have to go to the bathroom," as she had been holding it for some time. Grace sat down next to Princess, who lay with her head turned toward the wall with closed eyes. Princess hadn't been responsive for days. Candie then entered Princess' room and as the dynamic duo of Candie & Grace filled up Princess' room one last time with love, Princess turned her head from the wall to face them both, opened her eyes, looked at them one last time, and took her final breath.

We raised double the amount of funds needed for Princess' cremation. And that evening after Princess' death our Volunteer Manager sent out the requisite email illustrating Princess' death story & concluded it with the lyrics below. His choice of words reminded me why I love this work. Mostly because I get to learn from those who never even knew they could teach.

And then I pulled up YouTube and got some Led out.



"...And as we wind on down the road

Our shadows taller than our soul.

There walks a lady we all know

Who shines white light and wants to show

How everything still turns to gold.

And if you listen very hard

The tune will come to you at last.

When all is one and one is all

To be a rock and not to roll.

And she's buying a stairway to heaven."

 —From "Stairway to Heaven," Led Zeppelin




Thursday, May 10, 2012

Miscarriage Muffins

One of the best explanations of the grieving process I've ever heard is that each time we experience grief, we dip into our grief reservoir, and that each time we dip into the grief reservoir, we dip back into all of our past grief. I happen to know that in my reservoir live tenderness, vulnerability, feelings of uncertainty, and a habitual fear of change. When I dip down into my reservoir, I often come back to the surface surprised, gasping for air.

Some months ago I dipped into my grief reservoir. It was the five-year anniversary of my ex, Bryce's, suicide. I knew a thing or two about anniversaries from the previous four years, but I had made the assumption that five years had been enough time for me to get through this particular anniversary without falling apart. Surprise. When I dipped into my reservoir and watched the emotions surface, it occurred to me that this was a pretty significant anniversary and added to it was a cup of awareness, a quart of sadness, and a half cup of growth. So much had transpired and healed in my life since Bryce’s suicide that I assumed the event had just turned into a sad memory from my past. But it hadn’t. It had become the most significant event that had integrated into my life, so much so that it had directed me onto an entirely different path.

After Bryce's suicide, I started 12-Step recovery in Al-Anon and investigated a family tree weighing heavy with the fruits of addiction. I attended suicide conferences to research PTSD on suicide survivors and completed suicide support group training to help others who had been struck by the same trauma. I wrote multiple articles on grief and continued to help others through their own grief, particularly those struggling with a loved one’s suicide or those who had attempted suicide themselves. And I gratefully started to serve my community by doing suicide prevention with teens when I found out that Bryce's suicidal thoughts started at the same age. But most poignantly, I used my grief and all of its gifts to train to sit at the bedside of those dying through Zen Hospice Project. Looking back on this list of new commitments, life was both rich and full. It also offered me more meaning ever since the suicide had occurred; yet somehow I still found myself grieving five years to the day.

What I didn't realize on that day was that my grief was laden with new life. Two days later I learned that I was pregnant. I had never been pregnant before and it was a miracle to me that at the age of 38 I was able to become pregnant so quickly. My husband and I were happily whisked into a new take on our future just days after I felt myself drowning in my grief reservoir. So here they were again—happiness and suffering—all in a week’s work, just as life likes to do it - whip it up and bake it.

This recent news was also sprinkled with curiosity, a dash of anxiety, and a debilitating bout of constant morning sickness. I was miserable. I was depressed. I was excited and I was scared. But wasn’t I also supposed to be enjoying this little life growing inside of me? Surprise. I threw up everyday. I could barely leave the house in fear of puking in public. I had to trade in my healthy diet of leafy greens and vegetarian dishes for turkey sandwiches, chicken tortilla soup, banana-vanilla ice cream milkshakes, and peanut butter & jelly sandwiches each night before bed. Saltines and ginger ale became my staple bedside snack. This growing life inside me was a bitch.

Nine weeks into my pregnancy, I went in for my first ultrasound and came out with an empty amniotic sac. The egg had attached, my body had flooded itself with pregnancy hormones, but the baby had never grown into much of anything. It was merely a yolk. Two nights before that ultrasound, and a day free from puking, I had just noticed my tummy poking out above my pants. And I smiled with joy while making my husband photograph my baby bump from the side.

After opting for a D&C five days after that photo session, I lay on my aunt’s living room couch. My aunt comforted me with warm tea and cookies and sent me home after many hugs and tears with a bag of Meyer lemons. So what if my uterus had only produced a blighted ovum? Life—once again—was handing me lemons.

I went home and searched recipes for something to bake my heart out that would take a bag of lemons off my hands. I shared the miscarriage news with my new neighbor who shared her miscarriage story with me over dinner. She told me to take my time—reminding me that sometimes the healing takes longer than we think—and that for her it took a full year. I listened as she opened her heart and then decided to spend the next two days alone baking. During those two days I learned something: that two batches of muffins are much better than one. And because my new neighbor had just switched over to a gluten-free diet, I made her a special batch, then I swaddled them in an old sarong and placed them at her door.

In the evening she sent me a text. “Very yummy and not too sweet,” she thumbed. “Slightly bitter, like the experience. ;-)”

That's how I came to dip into my grief reservoir to remember that grief bakes slowly over time. I recalled that women have grace to share from their experiences. And that when life gives you lemons, make miscarriage muffins, and bake them as fast as you can.

Miscarriage Muffins

Total time: 40 minutes
Servings: Makes 18 muffins

2 cups flour (substitute with gluten-free flour for gluten-free friends)
1 cup plus 2 tablespoons sugar, divided
1 teaspoon baking soda
1 teaspoon salt
3 Meyer lemons, divided
2 eggs
1 cup milk
1/2 cup butter, melted
1/2 teaspoon cinnamon


1. Heat the oven to 400 degrees. Combine the flour, 1 cup sugar, the baking soda and salt in a large mixing bowl. Set aside.

2. Cut two lemons into 1-inch pieces. Put them in a blender and pulse until the lemon is finely chopped. In a small bowl, lightly beat the eggs. Add the milk, butter and chopped lemon. Stir.

3. Make a well in the center of the dry ingredients and pour in the lemon mixture. Stir just until all ingredients are moistened.

4. Spoon the batter into well-buttered cups of muffin pans, filling each half full.

5. Combine the remaining 2 tablespoons sugar and the cinnamon. Sprinkle about one-fourth teaspoon over each muffin. Cut the remaining lemon into 9 paper-thin slices; cut each slice in half. Top each muffin with half a slice of lemon.

6. Bake about 20 minutes, until golden brown. Run a small spatula or knife around each of the muffins to loosen, remove from the pan and cool on a wire rack. Serve warm.

Gratefully stolen from The LA Times Food section.


Thursday, February 9, 2012

Litquake, NHK Japan News, & Me

Each year in October, my blessed role on the Litquake Executive Commitee arrives with the chilling winds. During our culminating event, the Lit Crawl, I curate a little reading series in the beautifully muraled Clarion Alley here in the Mission District of San Francisco. Muralists grace the walls expressing their hearts and minds and I bring writers and authors into the Alley to fill the space between. We set up a precarious stage made of four milk crates bolted to a wooden pallet, bring in a professional sound system and lights, and watch neighbors climb onto their roofs to sip beer as the city communes for the written words of their comrades. It's a magical evening. I feel moved that I came up with the idea four years ago, and my heart swells that San Francisco has come to enjoy it just as much.

This year a news team from NHK Japan decided to cover the Lit Crawl. They also decided that they alley was a cool place to shoot some B-roll. What I didn't learn until after the festival was that they wanted to use my story-how I came into Litquake and why I read in the alley-as the second half of their coverage. So here it is, the finished piece and all of its literary glory. The second half that covers my story and Clarion Alley comes in at the 6:00 mark, but the whole piece gives a solid glimpse into our beloved week of literary love. Beneath that, I have also included a longer mini-documentary that my good KiwiAussie friend, Adam, shot as his gift to our cause.



Lit Crawl - Litquake 2011 Mini Doco by Adam Griffiths



Friday, January 6, 2012

Hummingbird as Gift



Yesterday I finally started my writing group here in my beautiful home. It's been a long time coming. I was in a writing group back in '03-'05 and I have missed it something awful. There is something magical about a writing group, as if ideas flow through the group into the collective pens and onto each person's page. Like a channeling of sorts <insert new age California fruits 'n nuts hippy quip here>.

It was unseasonably warm yesterday for January. We should have rain by now. That worries me, but on the flip-side, it's days like those that have kept me warm here for 16 years and why I can't leave. One of among many other Cali delights. So I had the balcony door wide open to highlight the sprawling sunlit view of the giant roach clip in the west. 

I was just about to share my live writing from the prompt I had given our group... "The last time I kissed him/her..." as I had once again taken a stab at a scene I've been writing over and over for five years now about the last time I saw my ex, Bryce, alive before his suicide. It's a painfully sweet scene. More painful than sweet. Quite telling of my muse for this next book: the degradation of a renaissance man.

Just as I was about to read, something flew through the open balcony door. A bird? A big bee? So fast, what is that?

A hummingbird.

He was a big one. With a pointy beak and wings that could cut a fly in two. I thought and said, "Wow. It must be tiring flopping one's wings like that. I hope the little guy rests?"

"This is auspicious," Jenny from Denmark said.

We were all nervous, yet calm. I could tell that while we each sit with dying people every week, we couldn't stand the idea of that little hummingbird dying in my living room. Not as we were in the midst of writing about death, loss, spirituality, and meaning. Now really, what a cruel joke that would be?

Ben, the guy and tallest of our group, said, "I think I'll move over here so he doesn't see me as an imposing obstacle."

I couldn't look at first and kept turning away when he'd flop into the high window...his wings hitting the glass...over...and over...again, thinking it was an exit to the outside world.

Then Ben had a thought. "Can those high windows open?" he said.

I kept wishing we had a butterfly net. How DOES one safely catch a hummingbird?

We have a long pole that opens those high windows, so Ben fetched it.

And just as I was about to hand off the responsibility to "the man of the group" (something we Daddy-Girls tend to default to in stressful moments when men are around), I pulled up all the calm from all the meditation I've done, and the 15 minutes we had just done together before we started writing, stood on a step ladder, and slowly raised the pole toward the high window and the bird, and I effortlessly opened the window. 

The hummingbird landed on the ledge as if happy to rest for a bit. In no rush to leave.

"Go on, guy. Fly away. Move left. There now. Through the window. Freedom is near," were just some of the phrases whispered by the three meditating writers.

And off he flew, eventually, through the crack on the underside of the window.

We all breathed a collective sigh of relief.

This morning I looked up the significance of hummingbirds and this was my favorite find of the lot:

"...The first time is more of an awakening, the second is the opportunity to open your heart and accept the healing. The bird came not just to your house, but inside. You faced with experience with a gentle approach in catching and releasing the bird without harming it. This reflects your own personal healing journey, to face your own experiences with grace. You remind me of my own experience in my teen years when I rescued many a hummingbird as they frantically tried to escape through the boathouse windows, catching them in a fishing net and carrying them outside. This hummingbird was willing to risk its own precious life to help you in your journey, but there was no other option, we do what we must do without thought of our own wellbeing. The first hummingbird came to awaken and heal you so you could drive home safely. The second came to give you opportunity to give back. ..."




Thursday, October 27, 2011

Collaborative Grieving: Many Voices Building Hope in The Spoken Coast Project

One of the gifts that has come out of my grief is the concept I've called collaborative grieving. I think of collaborative grieving as the opposite of isolation in our grief process. While the unspoken message in our society is that grief is something to process in private, outside of work hours, and as quickly as possible to return to someone's version of normal, I chose the opposite. I grieved out loud, in public, in workshops, with strangers, and now I feel free of my suffering because I had to do so.

In the rest of the world, collaborative grieving is ingrained in ritual and in culture. When I traveled alone through Asia for two years in 2000, I discovered grief was a part of daily life. There grief is not something to fear, or quieted to exist merely in life's shadows. Death and grief happen in community - and it is shared and processed out in the open among its members. In Indonesia on the island of Bali, processing death even has its own month - August - where villagers have their teeth filed, the dead body wrapped in a white sheet is placed on an altar to be carried by its community, and the body burns while its ashes float over loved ones into the tropical air. When I stumbled on this ritual during the month my parents visited me on the road, my father became uncomfortable - frustrated even - while I had to remind myself not to stick out my tongue, as if catching flakes of snow. I like to think that moment was my personal foreshadowing, as to how I might arrive at my personal place of comfort with death.

But being in Asia didn't bring me to collaborative grieving, or to sit on my comfortable cushion with death. It just gave me a glimpse into the concept. I had to struggle and grieve myself - and bring what I was experiencing after my boyfriend's suicide into my community - in order to find solace.

Insert The Spoken Coast Project.

I met Marissa Krupa, the creator of The Spoken Coast Project, shortly after Bryce's suicide. She most likely knew me as the girl in a heap of emotions who cried out my sorrow to strangers. Fortunately, I was able to return that gift of listening when she learned that her mother, and her brother, were both diagnosed with late stage cancers. Marissa went through her own grieving process - and continues to do so - through her project. Her brother, Mickey, unfortunately died early this year. But the way her community failed her in her grieving process prompted Marissa to look at her own life, and to make the necessary changes in order to honor Mickey's life as well as her own. She was laid off from her job, but she chose to leave the corporate sector that abandoned her to properly grieve her brother and find her own hope. How is she doing that? By climbing every peak Mickey climbed - from Alaska to Tierra del Fuego. She is feeling all of her feelings, as well as interviewing people about their own grieving process between each climb.

Marissa interviewed me this summer, and what arose from the ashes in my interview - and in all of the people she has interviewed in her path - was this trailer to introduce her project. It's about a fifteen minute film. And it's about death. But most importantly, it's about how we think we are grieving as individuals, but it's our collaborative grieving that creates the healing we have worked so hard to live with today. Please watch and enjoy. And if you are so inspired, please donate some dollars or some airline miles to her project so that Marissa can continue this very important work. She needs it. I needed it. America certainly needs it. And I imagine - that one day - you will need it too.