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

New Steps

A friend who facilitates a support group begins the gathering with a time for each member to “check in.”  After they  have shared what they are coping with at the moment, she reminds participants to add the phrase “and I am  much more than that.”  It’s wise advice.  In the midst of a health challenge, preoccupation with seeking signs of progress or new treatments may dominate much of our time and energy.  It helps to remind ourselves and others that we are “much more than that.”

While waiting for a further conference on next steps in treatment, I’ve looked for ways to celebrate my wholeness rather than wallowing in my discomforts and limitations.  I was able to participate with  kinship family advocates in our day at the Capitol last month. We have been successful in securing more financial support for grandparents raising grandchildren and other kin caregivers.  It’s an important investment in stability which we have achieved through many visits to legislators telling our stories.  Because we show up frequently during the sessions, deliver “Cookies from Grandmas,” and are clear about our commitment to getting more help for  traumatized children, we have been referred to as BAGs—as in "Watch out, here come those Bad-Ass Grandmothers!” Solidarity and persistence pays off.

Other active practices: I meditate and pray every day, praying especially for border issues here and worldwide for those affected by violence and oppression.  My granddaughter’s kitten keeps me company as we watch the birds feeding outside the kitchen windows. These sunny mornings the greening of the desert and emergent flowers lighten my spirit.  I sing in accompaniment with favorite CDs, joined in the MLK sing-along, and add my voice to hymns in church.  Singing always reminds me of Andy and our life together. What power song has to create community and strengthen movements for justice!  Hope.  All these activities encourage and support hope.

Because of the impending retirement of the senior oncologist working with me, and with his advice, I’ve been given a new doctor.  I chose him based both on his experience and, significantly, on his philosophy.  This will  mean developing a new relationship and participating in a renewed review of my treatment plan.  We welcome the opportunity to have his expertise and perspective on my progress and options.  Cathy and I had a final appointment with the departing doctor this week.  He has recommended that I become one of the first patients in southern Arizona to try a radioactive drug called Lutathera, newly approved by the FDA. It targets neuroendocrine tumors and is administered by infusion.  The insurance company will have to approve it, of course.  Apparently it costs $47,000 per dose, but luckily I will need to have it only once.  I question how much of this cost is justified by the cost of research to develop the treatment, and how much of the cost is evidence of opportunism and greed.  Just wonderin’…

Oh, and finally a welcome new development in my life.  My hair has thickened again and has come back to being curly!  I have to admit to a bit of vanity, and I’ve always considered my hair to be one of my best features.

Resources: 

During this season of Lent, one of the lectionary readings was the passage where Jesus asks us to love our enemies.  Here is an excerpt from a poem by Steve Garnaas-Holmes:

                        Love [the divine Light] in everyone.

                        Love it in the struggling neighbor

                        And in the awful, the tyrant, the evil ones.

                       

                        As you stand for justice,

                        confront the oppressor,

                        resist the bearers of evil,

                        do it with love in your heart,

                        for them, and for the world.

                        Disarm them as you must,

                        with love for the lost child in them

                        and for the ones they harm.

Keeping our heart in the light

                        gives us courage to fight evil

                        with love.

In reading various sources for meditation, I found a blog entry from a mission co-worker placed in Chiapas, Mexico.  Elena Huegel trains leaders in how to promote healing from trauma at an individual and community level.  In this self-reflective blog entry she relates experiences in her work to the concept of tempering the soul for resilience.  The idea is that on our spiritual journey, we can cultivate flexibility and endurance through adopting personal practices.  She gives examples that illustrate the importance of

•        nourishing a healthy sense of humor,
•         recognizing the dignity in the other,
•         developing patience,
•         pausing to discern where and when to seek justice, when to love kindness, or when to walk humbly on knowing one is not God,
•         taking slow, thoughtful care, like the seasonal nature of garden flowers, avoiding quick fixes,
•         creating safe space where all can thrive and form a counter balance on which one can lean when bending in hurt or pain.

If you’d like to read the entire blog, I can send it to you as an email attachment.  Send me a message at annwnichols@gmail.com.

I am grateful to all of you, my beloved support community, for your prayers, thoughts, and good wishes.  They continue to help with my healing and hope.