Masked, Distancing, Confined and Wondering

Two months ago, I wrote about our extended family of 10 people sheltering in place together.  Our numbers have gradually decreased, until I’m now living alone in the main house.  A granddaughter who is an essential worker stays in the studio that has its own entrance and facilities.  The restoration of silence and space brings its own gifts, but there is no doubt that it is more eventful and enriching to live with close-knit family in residence.

Friends call and ask, “How are you doing?”  “As well as can be expected under the circumstances,” I’m likely to reply.  It can be hard to distinguish how much of my response is influenced by the pandemic, and how much is due to the status of my cancer.  Here are my reflections on each.

By now, I’ve had three of the four planned Lutathera radiation infusions to treat the metastatic spread of the cancer.  My oncologist says that after the last treatment takes place September 29 we will know more about my condition and prognosis.  The unpleasant GI side effects are under better control. No pain is a good sign.  I move slowly and stiffly and sometimes have issues with memory and slight confusion.  Might be due to age as much as disease.  As I work on building exercise into my daily life, Ruth Bader Ginsberg is my role model.  My kids observe that I still beat them at Scrabble and am capable of preparing a full meal complete with homemade baked goods. My engagement in the community continues.  I sense a strong life force within.  My spirit is continually renewed by the support of Andy, my family, faith communities and friends.  And hope persists.

With respect to the pandemic, I admit to feeling hug-deprived.  Time-confused as days blend into one another.  Missing seeing smiles as we go about masked. Longing to sit with friends in a restaurant and be served.  Depressed by the news full of evidence of suffering, neglect, oppression, violence and manipulation.  Disgusted by the stupidity, spinelessness, partisanship and callousness of so many of our political figures.  Fearful of the economic  distress facing the unemployed and low wage workers as we fail to invest in the social safety net or provide fair compensation for essential workers. Yearning to have my grandchildren safely back attending in-person school.  Hoping for the survival of small businesses in the community.  Praying for a fair and free election with full participation.  And so much more. 

 I’m with many of you in wondering if and when it will ever end.  And how will we know when it does? It’s not like we can sign a treaty and declare a victory, a cessation of hostilities.  Or mark the end in some ceremonial way.  A vaccine will certainly mark progress, but its effectiveness will depend on how many are willing to trust and be vaccinated.  The pandemic may seem to end in phases, freeing different groups of people in waves—children, youth, people of color, the healthy, the old, and immuno-compromised people at the last.  Risks will still be there for a long time.  Tolerance for risks will vary according to the advice of experts and the individual’s level of fear or sense of caution.   What if it never ends, only shrinks and fades in imperceptible ways, leaving the person alone with decision-making about re-entering social engagement? 

And as we re-enter social life together, how will the world have changed?  What have we learned?  Are we willing to speak truth to power? Find ways to promote nonviolent and meaningful change?  Will we continue to commit to grappling with racism and white supremacy?  Will we pay attention to the poor?  Will we invest again in public health? Will we build more affordable housing?  Create and strengthen a network of community mental health services?  Re-orient our approach to criminal behavior to emphasize problem-solving and restorative justice?  How will we support our public safety officers so they can genuinely protect and secure communities?  Can we achieve reasonable measures of gun control?  Learn to have civil conversations in which we differ respectfully and listen to one another?  Confront in ourselves and others tendencies toward greed and self-centeredness?  I believe that it will take both kinds of commitment to reach the Beloved Community:  investment in personal changes of habit and priorities, and investment in creating change in social policies and institutions to promote a society based on peace and justice, freedom and dignity for all people.  End of sermon, and let it be so.  With guides like John Lewis, and the energy of new young leaders willing to engage in “good trouble”, it may come to pass.

Words of wisdom for these days:

Blessing in the Chaos  To all that is chaotic in you, let there come silence.   Let there be a calming of the clamoring, a stilling of the voices that have laid their claim on you, that have made their home in you, that go with you even to the holy places but will not let you rest, will not let you hear your life with wholeness or feel the grace that fashioned you.   Let what distracts you cease. Let what divides you cease. Let there come an end to what diminishes and demeans, and let depart all that keeps you in its cage.   Let there be an opening into the quiet that lies beneath the chaos,   where you find the peace you did not think possible and see what shimmers within the storm.                                                                                                                                               -       Jan Richardson The Cure for Sorrow: A Book of Blessings for Times of Grief    The Gates of Hope “Our mission is to plant ourselves at the gates of Hope— Not the prudent gates of Optimism, Which are somewhat narrower. Not the stalwart, boring gates of Common Sense; Nor the strident gates of Self-Righteousness, Which creak on shrill and angry hinges (People cannot hear us there; they cannot pass through) Nor the cheerful, flimsy garden gate of “Everything is gonna’ be all right.” But a different, sometimes lonely place, The place of truth-telling, About your own soul first of all and its condition. The place of resistance and defiance, The piece of ground from which you see the world Both as it is and as it could be As it will be; The place from which you glimpse not only struggle, But the joy of the struggle. And we stand there, beckoning and calling, Telling people what we are seeing Asking people what they see.” Victoria Safford, the minister of White Bear Unitarian Universalist Church, in Mahtomedi, Minnesota (www.unitarian.org/whitebear)

 

 

 

 

 

 

Where are we headed?

It’s been six weeks since I last wrote a blog entry on April 25.  Six more weeks of sheltering at home.  As I wrote last time, we have been a household of 10-11 people, crowded together, with all the joys and tensions such an extended visit brings. (A visit with limited opportunities to leave confinement, except for walks in the neighborhood and trips out for essentials.) Recently, we decided to write a newsletter highlighting some of our more interesting adventures.  This endeavor is still in process, with headlines such as “Attack of the Giant Moths,” “Hidden Treasures Found in Garage,” “Cat Causes Chaos,” “Rescue of Two-Year-Old Audrey Accidentally Locked in Upstairs Bedroom,”  and “Battle of the Javelinas and Underwear Man.” When it is finished, I’ll put a link on my Facebook page.

Like most people, I’ve experienced a degree of anxiety and have been grieving the pandemic’s effects on the world and our nation.  I’ve seen the faults and limitations it has revealed in our health care system, the political manipulation and corrupt response of our President, and the struggles of public health experts to be heard as they attempted to guide our response to this unique challenge.  The disproportionate number of deaths from COVID-19 within the African American, Latinx and Native American populations is shocking.   I haven’t been surprised by the competition between those more concerned with the impact of COVID-19 on the economy and those concerned with the needs of the community for protection from illness and help with basic needs. I’ve been impressed by great acts of courage and compassion as networks of mutual aid have developed in neighborhoods and as “essential workers” have carried on despite risks of contracting the virus.  I’ve been disappointed by the selfish disregard of those who would not wear masks and who consider their personal freedom to be infringed by the protective measures set by governors and mayors.  And I found amazing resources on the Internet.  If you haven’t seen it, I recommend the You Tube version of “Bolero” produced by the Julliard School of Music.  https://www.youtube.com/watch?v=rqzkn-jX-JU

Then came the video of George Floyd revealing the all too familiar death of a Black man at the hands of the police.  This time, it seems to be a tipping point.  No one could justify the action of the police officer who knelt on George’s neck as he struggled for breath, or the three officers who stood by and watched.  It reminded me of all the other recent cases of such abuse of power and loss of life.  It has made the “Black Lives Matter” movement gain new allies. It’s focused attention on the many manifestations of racism in our society:  mass incarceration, police brutality, racial disparities in health care, higher unemployment rates, greater poverty…the list goes on.  As was happening all over the country and even the world, our family (except me) made signs, donned masks and joined in a peaceful demonstration.  But we know that it is not enough, it is only a beginning of the accounting and action that must happen before there is any healing, any change in our system.  And we know that not all demonstrations were peaceful, that they were met by military-style police response in many communities.  But not all.  There were courageous acts of solidarity of protestors and police officials together in a number of communities including ours. Signs of hope.

As the unrest settles, I’m left with deep questions about the pervasive racism in America and our desire to do something about it.  How do we begin?  What actions can we take? How do we keep the momentum, when we know that our national response to crises is often short-term and insufficient?  How do we promote dialogue and repair when the problem is so massive?  My son-in-law who directs the Kroc Institute for International Peace Studies at Notre Dame University hosted a webinar yesterday on “Race, Violence, and Protest” which was viewed by over 600 people and is available online.  The complexities of the issues were exposed by the different presenters.  I’m afraid that many of us will become so overwhelmed by the vastness and embeddedness of racism in the fabric and structure of our society that we will be paralyzed when we most need to be mobilized. But we must confront the temptation to despair or to allow compassion fatigue to take over. 

I hope that you might share with friends and family ways you find hope and the courage to engage in action to dismantle racism and build a more compassionate, just, peaceful and kind community. We are all in this together, and we need to support each other as we find ways to engage.

Even small actions can help.  A friend and I have signed up with a project developed by the NAACP to fight voter suppression in a state that has “cleansed” their voter rolls.  We are sending hand-written postcards with information alerting the recipient that they may have lost their registration and giving information on how to check and re-register if needed.  For those of us concerned particularly about racism in our border policies and policing, there are organizations that need financial support for their ongoing human rights and anti-racism work here in Arizona.

Perhaps I should mention my health, since this is a blog about cancer and hope.  All is going well.  My second Lutathera radiation treatment is scheduled for next week, and I will give an update after that.  I feel well on the whole and am grateful for my family’s close care and all the prayers and good wishes from friends and my faith communities.  I’ll close with a prayer:

Nadia Bolz-Weber’s Prayer, May 31, 2020 God whose name has been used to enslave those who bear your image,  God whose name has been used to steal this land and kill those who bear your image, God whose name was called upon by Moses and Miriam and Martin Luther King Jr and Sojourner Truth, Brionna Taylor and George Floyd. God who raised up prophets to speak truth to power, and poets to speak truth to stupid, We call on your holy name to give us what we need to undo what has been done in your name.  We call on your name to bring your fierce mercy upon us and remove our complacency and our complicity.  We call on your name to heal the wounds of those whose daily reality we do not understand. We call on your name to give us a holy curiosity about what being Black in America is really like, Lord.  We call on your name to free us from our cherished notions of being “good” that keep us from hearing this truth, We call on your name to give us this day our daily truth, our daily humility, our daily rage, our daily hope. This country is burning Lord…may is be a cleansing Holy Spirit fire. Guide us to believe that the true name of God is stronger than what has been done in God’s name. Come, Holy Spirit.    Amen.

Family Ties

Recovery from the radiation infusion has gone well, with only a few side effects, mainly in the GI system. No unusual fatigue this time.  On this journey, it has been my faith communities, friends, and extended family that have helped me stay “calm and collected,” as my grandmother would put it.  I’ve felt surrounded by love, protection, and light.  A good medical team has planned and carried out the physical interventions needed, but the spiritual care is just as important.  I cannot control the changes that are happening within my body.  It helps to know that my mind and spirit can be strengthened by the support of my spiritual team (including all of you) as well as my personal meditation and prayer practices.

I have felt Andy’s spirit near me in these days.  Last Sunday, April 19, was the 19^th anniversary of his death.  Most years I’m by myself on that day, but this year there are 10 family members all together sheltering during the pandemic.  So we had a family dinner with some of his favorite foods.  I thought how happy he would be if he could join us, not only to enjoy good, familiar food, but also to hear three languages being used at the table--English, Hebrew, and Mandarin, with an occasional comment in Spanish just to help the kids in their studies.  He tried to pass a bill when he served in the Legislature to require foreign language instruction beginning in grade one and continuing through 12^th grade in our public schools.  It didn’t pass.  He believed in the value of understanding another culture and its language and world view as a way to encourage inclusiveness and deepen our appreciation of diversity.  And I think of him often these days for the support he secured for rural and border health programs when he was alive.  It would hurt his heart to see the deterioration of the health care system today,  but he would be encouraged by the commitment of many candidates and advocacy groups to build a system that provides health care for all.

One activity I dreamed up to involve our family in something fun during this time of confinement was a contest, complete with prizes, intended for all to join.  Three days were given to create some kind of art using items found on our property.  Cathy was the judge, and everyone produced something.  Some submissions were drawings or paintings, there was a mini-movie, a time progression video of a spectacular sunset, two photo collages, and an amazing sculpture entitled Junk in the Desert . My photo collage of plants and flowers growing in the desert surrounding our house is below.  Each participant in the contest received a small prize, items encountered when we worked on cleaning the garage or from my gift closet.  It was fun!

 

Resources

Some of you may have engaged with Brené Brown’s writings or her TED talk on vulnerability.  She has developed a podcast called “Unlocking Us.”  In the first offering, recorded on March 20, she talks about FFT’s (Freaking First Times—but I toned down the first “F”).  She points out that the first time we try to do something, it’s hard, we often make mistakes, we don’t know exactly what to do.  Living through a pandemic is an FFT for all of us.  She explains some of the dynamics of FFT’s and offers some suggestions on navigating them.  The podcast is free, and I highly recommend it.  Also her TED talk.

And here’s a prayer for our times by Nadia Bolz-Weber:

Dear God,

Some of us are exhausted by a constant stream of bad news.

Some of us are exhausted from the effort of trying to not freak out.

Some of us are exhausted by not knowing how we will pay rent.

Some of us are exhausted from the effort of trying to entertain and educate and feed and love children who are stuck at home.

Some of us are exhausted by the 13 hour shifts in a hospital we no longer recognize, working a job we are afraid might kill us.

Some of us showed up to this pandemic with pre-existing  physical and mental health conditions that were already exhausting. 

Some of us are exhausted by loneliness.

Some of us are exhausted by waiting so long for a new season of Succession.

And some of us are exhausted by the effort of trying to make this all ok for everyone else.

Life is so strained and tender right now.

I know that not a single one of us is promised another day, God.

But I guess I am asking for the strength for just the one we are in. 

Give us today our daily strength. 

Strength for today, and if you could spare it, bright hope for tomorrow.

AMEN.

p.s. HOSANNA in the highest

And I’m comforted by listening to the song “Deep Peace” by Sara Thompsen

https://www.youtube.com/watch?v=kb-FAOe396U 

Radioactive again

Help!  I’m being held prisoner in a bedroom!  Well, yes, it is my own bedroom with an attached bath.  Due to my new treatment and my radioactive status, I’m not allowed in the kitchen or near my grandchildren who are in other parts of the house.  Cathy or Michael and I communicate by cell phone when I need something. Old memory: I got my first mobile phone during the Katrina disaster.  Tucson was expecting a large number of displaced people, and we were setting up various services within different locations at the Convention Center.  It was essential to have cell phones to plan and network. Much more effective  than shouting.

Even my granddaughter Odyssey’s kitten, who loves to nap on my lap, is forbidden to be with me now.  We have observed that cats, unlike dogs, are unwilling to obey commands.  This independent kitty is Houdini-like in finding ways to disappear and reappear in any space she wants to occupy, so watching out for her antics keeps the rest of the family on their toes.

This confinement will last for 3 days, after which I still need to try to keep a distance of three feet from people for the next 14 days.  My clothes and towels need to be washed separately from the rest of the family.  Lots of precautions to keep everyone safe.  Before being allowed to leave the clinic my level of radioactivity had to be measured by a Geiger Counter to assure that it was low enough.  The machine looked ancient, but functional.

We met with my new oncologist last week by phone and yesterday, before the Lutathera treatment, on a video call.  I like him and the transition is happening smoothly.  We should know in a couple of weeks how effective the new treatment is.  I’m only the fourth person in Pima County to receive it. 

The 10 of us living together celebrated Passover and Easter  last week.  We observed these holidays in new and flexible ways, given the pandemic and its constraints.  Fortunately we are more concerned with the spirit of these occasions rather than orthodoxy.  Creativity rocks!  We also recognize how deeply we appreciate the value and importance of  family gatherings and traditions as part of the glue that sticks us together and affirms our identity.

I’ve found many rich resources online during the season of Lent and Easter, and resources shared by other faith traditions to help us through quarantining.  Prayers, stories of acts of kindness, music shared through the internet, educational seminars, all have nurtured my spirit.  I will include here one reflection that has helped me.

Blessing in the Chaos

To all that is chaotic

in you,

let there come silence.

Let there be

a calming

of the clamoring,

a stilling

of the voices that

have laid their claim

on you,

that have made their

home in you,

that go with you

even to the

holy places

but will not

let you rest,

will not let you

hear your life

with wholeness

or feel the grace

that fashioned you.

Let what distracts you

cease.

Let what divides you

cease.

Let there come an end

to what diminishes

and demeans,

and let depart

all that keeps you

in its cage.

Let there be

an opening

into the quiet

that lies beneath

the chaos,

where you find

the peace

you did not think

possible

and see what shimmers

within the storm.

- Jan Richardson

from The Cure for Sorrow: A Book of Blessings for Times of Grief

In the Time of COVID-19

Like most Tucsonans, I am in self-quarantine at home to protect myself from exposure to the coronavirus.   But not by myself.  My older son Michael, with Carissa and their 2-year-old, Audrey, arrived March 15 to visit for a week.  Then the county where they live in California established a “stay at home” policy and closed to travel in or out.  On March 18, Cathy arrived with her three children and their Chinese exchange student, to spend their 2-week Spring break here.  This is a well-established tradition in our family.  Finally, when Notre Dame closed down a few days later, Asher flew in to teach his courses and direct the Kroc Peace Center virtually.  So we are 10—just the maximum number of people who should be congregating in one place.

Services and institutions have gradually closed around us, and we are in the process of adapting. We have experienced piano lessons by Skype, church services by Zoom, lots of conference calls and virtual group meetings for the adults who are working full-time jobs.  When school begins again, the children will have a new way of learning with online classes.  Pray for the internet connection to stay strong!

We are incredibly fortunate to have outdoor opportunities that are

 safe.  Where I live, my house is surrounded by natural desert, and there are many beautiful walking options in the neighborhood.  On the back patio, we can watch birds and butterflies and other wildlife.  We did offer a shocking experience to the piano teacher from Indianapolis during a lesson on Monday.  A large diamond-back rattlesnake appeared on the front patio, visible through the glass door and on the Skype screen.  We’re used to them, but the family members not from Tucson were terrified.  We followed the snake to locate his abode so we could avoid playing nearby.

Coping with the uncertainties and distress that comes with unexpected change hits us in different ways.  The pandemic has unleashed fear, grief, and confusion, but also concern and compassion and a desire to help.  We baked cookies and delivered them, with a note of encouragement and an offer to be errand runners or just be a contact, to our neighbors and people we knew might be particularly vulnerable.  Our two Chinese family members insisted on providing gloves and masks and disinfectant wipes so drop-offs could be done safely. We call people we know who might be lonely.  I have extended my meditation and prayer time—a challenge with such a full house.

My next set of cancer treatments is scheduled to begin April 14, if we receive insurance approval.   A nurse educator called and explained the procedure in detail.  Four infusions are required, with 8 weeks between each treatment.  Each time it is an all-day process done on an outpatient basis.  Various side-effects are possible, with fatigue being the most likely.  Since it is such a new therapy, they don’t have much patient data to share about the duration or extent of the side-effects. 

I’m looking forward to meeting my new oncologist and other members of the team.  My life hasn’t been altered much on account of the pandemic in the sense that I was already staying home a lot because my energy level seemed to allow only a couple of activities a day before I needed to rest.  But it also feels oddly inappropriate to be concerned about my health when so much of the world is suffering the multiple effects of the pandemic. My little health challenge is treatable and I’m receiving the care I need.  It’s hard not to feel guilty about enjoying such privilege.  But I know that guilt is unhelpful.  So I’m watching for ways to build community and use my resources for good.  And I’m impressed by the way individuals have used the Internet and the media to share music, poetry, essays, art, dance and more to reach out to others and provide comfort and humor and entertainment and education.  There is much good in this world.

I have put in a few photos at the end of how we are spending this time together - and here is a poem for these times:

“The Wilderness is a Place of New Life—Resilient Life”

I used to think the wilderness would never end.

I called my mom and asked—

“Does time really heal all wounds?

Do the pieces ever fall back into place?

Does the wilderness go on forever?”

So she told me about the horizon.

She said, “There is an edge,

Where the earth meets the sky.

And when you’re there,

You will see daisies in the sidewalk

And the sun after the rain.”

I asked her to draw me a map

And she cried,

Because she knew this road was mine to walk,

But she promised to wait for me,

Day in and day out,

For as long as the wilderness raged.

So I walked.

And it felt like forty days and it hurt

  like forty nights.

And I waved to the people I passed there

  in the wilderness.

We tipped our hats to one another,

Silently recognizing the weight we

  each carried.

Until one day, I realized—

The earth always kisses the sky.

And this wilderness has turned into a garden,

And I have made it out alive.

And my mother hugged me,

There at the earth’s edge.

And she whispered in my ear,

That God was that gardener,

And that I had nothing to fear.

So if you ever ask for a map,

Know that God and I will be planting seeds,

Hoping to turn your wilderness into a garden.

For as long as the wilderness rages on,

I will never stop looking for you

Where the earth kisses the sky.

                        By Sarah Are 

sanctifiedart.org    

practicing piano

making brownies

                                                            building cairns

following the snake

sunrises

sunsets

science experiments

silly faces