Bouquet with Harvoni

bouquet

The last thing I noticed before we left home was the bouquet of flowers Rob gave me for Valentine’s Day. I considered bringing them along with us but instead consoled myself with a photo. The flowers reminded me of our marriage. A week ago the newly-opened yellow roses were perfect, wafting a gentle aroma when I drew near. Velvet green leaves and long lily buds pierced up between the sunny orbs.

I remember when we met almost 40 years ago. Our love was young and fresh. We too, like the flowers, were still perfectly formed. Four days (and four decades) later the roses had become wilted blobs hanging on weak stems. Simultaneously the Asiatic lilies had exploded into full glory – large white blossoms with pink stripes and dots surrounding fuzzy maroon stamens. Their incense permeated the dining room and I laughed out loud, realizing that I’d imagined these jewels as symbolic of my marriage now.

How did this happen?

Rob and I met when we both enrolled in a climbing class at REI. Not unlike unblemished flowers, our stretch of pristine beauty extended longer than that of most couples because we lived together three years before marriage and then waited to have kids. When we welcomed Clarke and Carolina into our bouquet, we were ready.

Our kids were school-age before we learned Rob had Hepatitis C (HCV). He’d probably been infected all of the time we’d known each other because he received tainted blood the year before I met him. Thanks to a procedure that ultimately saved his life, he’d contracted an insidious virus that would eventually destroy his liver.

After diagnosis, Rob’s best response was to stop drinking alcohol as he waited for a possible cure and begin fighting back the depression that surfaced. Modern medicine along with music, a significant job-shift and love from the communities we’d built at church and in our neighborhood helped him move forward. Eventually he retired, restored a piano and created our garden. Soon he’ll be a beekeeper.

Years ago, Rob could have chosen a complicated chemotherapy treatment to address the virus. After several months of side effects, he’d probably have beaten the little devil. But since his liver was only slightly scarred (rated 2 out of 4 in terms of damage), he could afford to wait.

Until today, when we find ourselves in the middle of a magnificent healing bouquet. That’s because a couple of years ago, Harvoni came on the scene.

  • A new drug offering almost 100% eradication of HCV.
  • Minimal side effects – only headaches and weakness for some patients.
  • No cocktail, just one pill per day for three months.

When Rob went into the hospital for his third liver biopsy, he was surprised to be greeted by a nurse practitioner we know. Mary Sue Galvin was our neighbor pre-HCV-diagnosis when we lived on the houseboats. For me, this coincidence was enough to consider him healed. With Mary Sue running the department and looking out for us, what could go wrong? Still, Rob the economist waited. After all, Handsome Harvoni was expensive. We decided to wait until insurance companies were required to cover most of the $100,000 tab. Then we waited a while longer to avoid the double deductibles of spreading the treatment across two calendar years. Rob took his first pill on January 2nd. Welcome 2017 and Harvoni! Good-bye Hepatitis C!

Some people suffer through gruesome surgeries alongside their lovers. Then come long recovery periods before strength is regained. Me? I’ve just listened to Rob’s tales of insomnia. Sleeplessness is not a side effect of Harvoni per se but Rob believes it’s a discomfort that arises when he’s not operating at 100% capacity. Also, no alcohol is part of the regimen and I’ve joined Rob on the no-booze kick in solidarity.

How dare I complain though? One thing I’ve liked about this period of our lives is being ever-conscious about the healing that’s happening right in our own home. About a month before Rob started popping pink pills, I was overcome with joy at one point, certain he was going to be well after beating this virus. Then 30 days into the treatment, we had our proof when they checked the viral load in his blood. First glance of the results showed a chart with October 2016 counts alongside late-January 2017 numbers. In October, millions of HCV microbes showed up. But beside the January date on the grid? “None detected.” His liver counts are improving too.

Truly we have lived our lives fully for the past 20 years. We traveled. We raised our kids. Lots of laughter and loving. Still in the shadow of HCV, I’ve had my blood tested a few times (uninfected) and I’ve learned about liver transplants. Now we know, blessedly, HCV and liver disease is not what’s going to take him down. We could be one of those privileged couples who live into deep old age together. No wonder the gorgeous voluptuous lily seems so like us.

But if I am honest even now, I know that by the time we get home those same pink petals will let go and drop off. The stamen dust will drift and spot the tablecloth. We’ll have a mess on our hands. And I’ll acknowledge those times when I feel distant from Rob, those times when we’ve hurt each other or just couldn’t care less. In so many words, when we’ve had a mess to clean up. And we will again. We’ll continue cycling – close, distant, blobs, jewels and messes. Regardless, in late March, post treatment when he turns 67, I’m definitely imagining a toast with whiskey on the rocks coming up. In the middle of this life bouquet of roses, lilies, Harvoni and each other, “Salud! Here’s to us!”

 

 

 

 

Racist Remarks

carolina-and-dana

My niece called me on a racist remark at dinner the other night. Not in an accusatory way, mind you, just matter-of-factly. She had described her reluctance to eat street food at her home in Beijing and I chuckled and asked, “Why? Because it might be dog?”

“No, that’s racist,” Dana replied. “Most Chinese people think that’s disgusting too.”

I was slightly taken aback. While I hadn’t meant to discriminate, I could see her point. I look down on eating dog and I’d captured a whole group of people in my ignorant comment. As it happened, I’m glad she used the r-word to describe my behavior because it got my attention. I don’t like to think of myself as racist but, like it or not, I do carry the privilege of being white in a society that has given those of my race individual and institutional power throughout history. I’m glad Dana shared her judgment right away in the moment and was not antagonistic. As a result I had to agree and then could reflect on how I’d like to speak differently next time. I could acknowledge that I have a lot to learn in this arena. Since I don’t intend to hurt others or treat them unfairly, I want people to tell me if my comments seem aggressive or mean.

Later Dana’s response encouraged me to backtrack on a related incident. I had been finishing lunch with a group of colleagues when one woman laughed as she imitated her grandson mimicking a Chinese accent. I had finished eating and was leaving the table so while I recognized this remark as racist and felt awkward, I didn’t call her out or at least ask her intent. But after my personal lesson with Dana, I decided to retrace my steps, voice my discomfort and ask my co-worker what she’d meant. Unlike Dana I hadn’t been brave enough in the moment but, later, I asked my friend if she would have told the story in the same way if a person of color had been with us. Even though she didn’t see the incident as I did, I left our follow-up conversation with a clearer conscience, emboldened to give immediate feedback in the next instance.

After all we teach kids not to be bystanders who allow bullies to hurt others. I think being silently complicit to racist remarks is an adult version of the same unacceptable behavior. I want to do better.

 

Feelings re: Politics

with-her

My morning practice includes journalling and reading my entries from a year ago, a month ago, a week ago and just yesterday. The last ten weeks have been loaded with “feeling words.”

Post-election: Shocked. Alarmed. Unnerved.

A week later after reading “Arrivals,” a poem about new immigrants by David Whyte, then sharing our own bridging stories with colleagues: Curious. Appreciative. Encouraged.

In between times given the consistent and general background malaise due to news of presidential politics: Dread. Disgusted. Uneasy. Distracted. Afraid. Worried. Apprehensive. Forlorn.

Then inauguration weekend.

Thursday after reading together from The New Jim Crow, a book about racism by Michelle Alexander, then sharing our own stories about undoing institutional racism: Disappointed and heavy hearted. Also curious. Compassionate. Open.

Friday after accidentally turning on my phone and seeing the Obamas board the plane to end their era as our leaders: Bereft. Deeply sad. Fragile. Wretched. Vulnerable.

Then after seven hours volunteering at Seattle United, an event to connect immigrants and refugees with attorneys and other services: Engaged. Elated. Pleased. Grateful. Refreshed.

Saturday after the womxn’s march, sitting on my sofa alone, seeing photos from around the globe of others who marched, millions of us…er, at the very least, a million of us: Spellbound. Amazed. In awe. Invigorated. Deeply touched and moved. Inspired.

Like we can do this.

The next morning I sat in bed, still in pajamas, with my sister, studying Jennifer Hofmann’s Weekly Action Checklist. This is where we started. Some people have been doing this since Day 1, preparing, making it easy for us to be steadily politically active and not burn out. We each picked our three focus areas as Jen suggested. Then we located contact info for our congresswomen and senators. Then we left messages on the phones of those leading action we oppose. We donated. We committed to twenty minutes of this targeted work per week. It was good to be together.

Empowered. Determined. Proud. Invigorated.

Yes, we can do this. Yes we can!

 

 

 

 

The Final Stretch of Barack’s Presidency

james-2

On one level I’ve been miserable lately due to federal politics but, thankfully, I’ve had distractions because James and then Dana helped us welcome in 2017.

James stayed with us first. He’s a dual citizen – Australian and U.S. A new uni grad, in his vernacular, with degrees in environmental science and geography. James lived across the street from us with his family as a baby and since then with his folks in Perth. While he traveled internationally with others, this trip is his first major one on his own. He wants to live and work in the U.S. for awhile and I hope that works out for him.

Technically Dana is my first-cousin-in-law-once-removed. Wow, six words to describe one relationship. That reminds me of a characteristic I like about Spanish where one simple word describes each family relationship. No “in-law” tacked on for instance. Instead suegra means mother-in-law and cuñado means brother-in-law, etc. All this to say, I’m going with “my niece” from now on when I speak of Dana Fong. After all, she calls me Aunty Penny.

Dana is staying with us this week because she lives and works in Beijing but her company is based in Seattle. Occasionally they fly her in and this time, lucky me, she asked to stay at our house. Dana’s an easy guest because she has work plans during the day and social plans in the evening, including the one great night she saved for family dinner around our table. While Dana is in her twenties too, unlike James, she knows how to get around town and came here with U.S. dollars in hand.

Thank God for these two. Yes, James’s visit required more direct time and energy from us but we were fascinated and really enjoyed having him. Between the two, he looks more like he could be our kid than Dana does, as she is Asian-American. But the minute he speaks he’s foreign, English-speaking so we can generally understand him but his strong accent, to our ears at least, led to some fun conversations. We loved hearing his stories and his insights as he tackled Seattle and compared America to Australia, a continent we want to visit now more than ever.

Hosting Dana, on the other hand, was like having one of our own at home for a flash. She came and went on her own schedule, touching base every now and then. The stories she shared were usually in response to our questions and more often about China, her home base for now and another place we want to visit. Again our world expanded even though we stayed right here, cozy at home.

I am immensely grateful we started 2017 with international visitors. Definitely a privilege. I’ve needed distraction from the political hoorah unfolding all around me as the presidential reigns change. Yes, I cried with the rest of you listening to Obama’s farewell speech. I will be volunteering on Friday and marching on Saturday to mark Inauguration Day. I find though that my best antidote to anger, fear and sadness in the face of impending sea change is curiosity and engagement with whoever is right here, right now. Bridging across ages and continents via our twenty-something guests was good medicine for the fortitude needed in this time of change and uncertainty.

 

Great Light in the Neighborhood

menorah

In the beginning – how else does one start a wonderful story? – a Jewish family invited the whole neighborhood to make Light together over eight days. But first, the father Jim sculpted giant clay buildings to hold the candles and the sun and moon aligned so the first time we assembled was Christmas Eve. I hadn’t lit a menorah candle before but after the first night I was drawn as though magnetized whenever I was in town – six of the eight nights at 6 PM between the Eves.

Every night I learned something new. Since I arrived early on the first night, I heard the story of Hanukkah from a boy in a wheelchair. His mother was gently grilling him, “Why do we even do this?” Since there were only a handful of early-birds, I stood alongside and encouraged him, “Oh good, I don’t know this story. Tell me.” I learned about the small amount of oil that miraculously lit the desert for more than a week.

That’s when Jim slipped in with others and explained the process. Someone would hold a did-he-say-shama candle from which we would light all the others. The first house held eight candles. If you were filling the lowest floor it was best to straighten your elbow and, to avoid burns, form your wrist into an L-shape so you could safely lower the candle on your fingers. When all were lit, we’d extinguish the string of electric lights and recite or sing the traditional Hebrew prayer together. That’s what I remember about Day 1. Oh yes, I also remember spontaneously hugging Jim and his wife Carolyn, too, at the end knowing I had found a gem and would be returning night after night.

I took my own family to the Hanukkah observation the next night. Mom and Carolina huddled together under a new down comforter (a gift from Santa) and sat on the bench in front of the menorah. Rob stepped up to serve as Shamash holder. And since Jim was out-of-town, his oldest son Jesse ably led the proceedings. After prayers, we sang a few songs, including the one I knew about the dreidel.

James came with me on Day 6. We’d first known James as a baby 20 years ago when his folks lived across the street before they moved back home to Australia. He’d returned to check out this second home of his. An outdoor Hanukkah lighting seemed the perfect way to re-introduce him. I chuckled when he asked, “Is this what usually happens in America? Everyone is so friendly.” Why answer? After all, I might risk altering any surreal glow that the usual neighborhood Hanukkah lighting might pose after 30+ hours of traveling. Maybe he was imagining the soft warmth of similar and simultaneous miracle-making in neighborhoods across the land? Yes, maybe we obese Americans do all drive giant pick-up trucks but at least we know our neighbors and assemble in the rainy darkness once a year. An extra bonus was James met Gabe, another of Jim and Carolyn’s sons, and launched a plan to get together later. Knowing Gabe proved especially gracious two nights later after all the buildings were lit because James could welcome in 2017 with peers.

As the week progressed I had a chance to ask Jim a question now and then. I learned that he didn’t start out to build a menorah but after constructing some of the village, realized what he had in his hands. I learned that he’s left-handed and so, in recognition of this family characteristic, untraditionally lights the menorah left-to-right. He explained that the bricks between the buildings and his home were crafted individually and serve to reflect light, thus creating more of it, rather than to provide a fire break as I’d assumed. The small white vase cradled in the wall above the center candle is a “social experiment” always there throughout the year to see if anyone walks away with it. This artful story goes on and on – starting long ago in the desert and evolving, fresh and polished-up each year, even here in drippy Seattle.

While I knew Jim’s name before our week of lighting candles together, I wasn’t sure of his last name (Stout) and had to ask how to spell Carolyn. I knew the basics: he’s a physician as well as a potter and has three sons. This week though, what I remember best about all I’ve learned, is Jim’s deep soul. I watched him share an ancient tradition matter-of-factly with just the right amount of both laughter and reverence, especially for those of us gathered at his home, outdoors and in public. I saw him interact with his family and all of us. I left knowing his deep creative self because he had humbly and peacefully touched all of ours.

Would that we could all create light together and share our stories in this way.

rob-with-shamash