Here is where I am today. A passenger on Planet Earth, with cancer always on the horizon, during a worldwide plague, thankful for the rain that settled the smoke of so many homes and lives, with the most contentious election year playing out. I am grounded by the action of my legs roaming the land, and by the beauty that surrounds me.
It took two bone marrow biopsies and two specialized blood test (BCR-ABL) this summer to answer the alarm that leukemia was coming back. The first showed a blood test of 0.05%. This is a number you can’t feel in your body yet, but it is enough to take action. I have gone one year without the threat. Now it is back. I don’t have a word to describe the sensation in my body at this news. I suppose disassociation is the closest. This unpleasant psychological effect is meant to protect me, I know that, and it does do that. But I have to guard against it taking over my life, so that I can’t feel gratitude, love, or fun.
The doctor put me on the kinase inhibitor, Ponatinib. I first met Ponatinib in 2017. It is not a relationship I wanted to continue. For a week, the pill bottle sat in a little altar with two rocks with a word painted on them: “gratitude” and “courage”. This, together with a perfect apple from our little orchard, was meant to give my psyche a spark of positive energy about taking this difficult drug; trying hard to convince my body that this drug could be a magical cure. But the side effects came, hard, with sharp pain in the front and back of my midsection, diagnosed as pancreatitis. Choose between a healthy pancreas and incoming leukemia! I stopped the pills and got relief, and managed to find the courage to start again, and miraculously, it did not provoke pancreatitis the second time around. More miraculously, on the second test, my test came back negative for cancer. Even this news, I hear with a touch of disassociation. I have heard the words “you are in deep remission” before.
I think of leukemia as just below the surface of my everyday life. It very much wants to push up over the surface. I can—perhaps—keep it at bay with this drug, and a handful of denial, and an open palm of gratitude. I am treading my way through treacherous waters in my little boat of life, navigating the storms, hoping there are no holes in the hull and the waves are not large enough to overturn me.
The Awakening of the Black Lives Matter Movement is still exploding inside my soul. Podcasts bring Black voices into my kitchen and living room, conversations that have me bleakly observing the footprints of racism throughout our society. Voices that break my heart, re-learning our real history.
I started writing a Plague Diary and kept in going on Facebook for many weeks. I take a few excerpts from it now, just to capture the rawness of the time.
March 2: “My husband gets his ankle re-built. We look back on that timing and shake our heads; how just-in-the-nick-of -time it was, and how everyone in Washington seemed to go into lockdown with him during his necessary order to stay home and heal.”
March 8-14: “Suddenly, coronavirus is the major topic of conversation. Restaurants and bars start closing quickly; that saucy server and fabulous cook bouncing off into the unknown. We are in the CVT (coronavirus time).
April 5-11: “The “Stay At Home” rule for Washington has been in effect since March 24. San Juan County Health Office issues a directive to suspend all non-essential travel to and from the Islands and close all lodgings to vacationers.”
April 12-18: “My husband cuts my hair short. It seems fitting to look different.”
April 19-25: “26 million people have filed for unemployment. The economy is in a medically induced coma. The reality of a long time in coronavirus time sets in. Some days I carry on; others, I drift in sadness for me and for the world. We are in the same sea, but not in the same boat. All the ways that White and Privilege go together are becoming exposed like rocks under a torrent of water. Outside, birds flit against a psychedelic green, chasing insects, gathering nest materials, singing—dressed in their spring finery.”
April 26-May 2: “The news is full of stories of people drowning under the sinking Economy. Restaurants, retailers, risk, safety. Climate change, the election and voter suppression, food security . . . slide along on their own dismal trajectory as we focus on each day of the Virus. Are we going through a portal to a better future? It’s possible. Outside my window, beauty explodes, calling me for a walk.”
May 3-9: “On the eerie quiet streets of Friday Harbor, most stores are shuttered, some restaurants offer take out. There is an atmosphere of miasma hanging over us, despite good spirits or good fortunes.”
May 10-16 “Everyone must stay at home as much as possible. Businesses must re-open. The whole world struggles with this double mandate. Meanwhile, this country is being torn into two camps. There are days that seem almost normal—gardening and walking– and others that feel endless with too many trips to the food pantry. We are riding on the wings of Spring, her energy and birds, her green and energy.”
May 17-23 “Hot spots show up like the opening credits in Game of Thrones. Climate change plus coronavirus. Sun and rain blessedly fall on our islands.”
May 18-31 “Suddenly it is no longer the plague itself but violence and inequity that grab the headlines. George Floyd died on May 25 with a policeman kneeling on his neck. His last words were “I can’t breathe.” The Nation watched this. Black Americans dying at twice the rate of white.”
June 1-6 “Our county moves to Phase 2 re-opening. Hundreds lie down the length of the Burnside Bridge in Portland. Hundreds march everywhere. The president comes out of a bunkered White House to hold an upside-down Bible in front of the Church of the Presidents. Peaceful protestors are teargassed to make way for his passage; the church responds with outrage. Images of military in the capital with no ID stunningly resemble the Brownshirts of WWII. The Nation reels in a new dialogue full of fury, and for a while, no one talks about the virus. In Friday Harbor, on June On June 5, @700 masked people of all ages attend the Black Lives Matter march. Nationwide, the anger, which has been building for years, explodes.”
June 7-14 “The news is so full, going in all directions, impossible to track it all. People still fill the streets in the thousands, protesting. Black Lives Matter marches spring up in many countries around the world.”
June 29-July 5 “We are banned from Canada and from most of Europe. Coronavirus infections across the United States have passed 2.5 million.
July 6-12 “On our little island, tourists fill the streets in a place that feels safe to them. Islanders have many reactions to this, all over the spectrum. At home, our gardens and homes have never received so much attention, and our island walks continue in radiant beauty. Despite orders for nonessential travel only, the trails are crowded with people I have never seen before. We don coats and continue with physically distanced social gatherings outside.”
July 13-19 “I won’t quote numbers today. Instead, I will say the thing I think at night, when I can’t sleep. We have to go to walk straight into the reality of our times. Give us “good trouble” to get into– and lead us with courage to do the right thing. Where will this leadership will come from? Just look down at your own hands. There is the strange beauty of quarantine, and it allows us to think things we have not before, in the rush to do everything. But. The mask debate has seriously made me wonder if humans are capable of going beyond their sense of entitlement to look for the best answers for community. Black Lives Matter but the starkly beautiful awakening in that statement is losing its power in the ongoing violent fracas between protestors, anarchists, mercenaries and paramilitary federal agents. Truth is hard to find. The election feels so threatened and the work so monumental before and after, that the question “are we going to be Okay?” cannot be answered. But then. We were never okay, really. We were the Wizard of Oz, all bluster and color—a little man with props. All I know is that Covid, and Awakening to our country’s racism, alongside an arrogantly willful administration with no plan other than to control our nation, land us in an unknown territory, a literal wilderness. Nowhere to go but our own homes. Nowhere to stand but in our own hearts. Nowhere to be but in the stark reality of our times, unfurling the truth instead of a flag, leaving fear wrapped in its own chains.
July 20-26. “I am involuntarily building heart walls to keep from feeling the pain of what is happening. The rapid fire, never-ending news has us turning off and turning inward. There is a feeling and evidence that something trending toward civil war is in the air.”
July 27-August 9 “Krista Tippett, of On Being, says we have “a world to re-make”. Little by little, we are reckoning into a new authenticity, perhaps into the truth that was always there. Apocalypse is what it feels like, but in the original Greek, that word does not just mean cataclysm. It refers to an uncovering. The question, “what are we uncovering”? quivers in my heart. We have embedded brutality, and for that matter, stupidity –so we didn’t see it, and now it is in plain view. Some of us, me included, can’t look away now. We are grateful for our homes more than ever—but we know others are losing their homes. We are out of lockdown, but the bullets are still zinging. Krista Tippett says we have to nurture joy, along with what is hard. I see that this a practice many of us are engaging in. Our gardens and art testify to it. Our walks and time in nature testify to it.”
1st of September, 2020
I am trading in “hope” for “inspiration”, as this feels less passive and more manifested in the world by people who face the beast with unshakeable courage and resolve. I am inspired by people who protect other people and nature. I am inspired more than ever now by the activists of all ages who are stubbornly fighting for a world they believe in; and by the naturalists who keep showing us how beautiful and amazing the earth is; and by the Artists and Growers and Makers, who sing, dance, write, paint, act, grow and create in so many ways. I am inspired by the people I already know will cross the great stormy oceans set before them to vote, no matter the outcome. I will commit to defend their right to do so.”
It feels like the world is running in all directions. Still, as May Erlewine sings:
“I feel the sorrow and I feel the pain…
And I will be grateful at the end of the day
I’m going to walk, gonna walk it myself
Through the storms in my body, through the high-water hills
I will press on, be what it may
And I will be grateful at the end of the day…”