104 Leukemia Journal, July 31, 2016 – Loneliness

I’m grieving, not about death, but over loneliness. The isolation and
loneliness terminal cancer imposes. I’m gradually pulling away from life. Don’t
like it, but leukemia keeps draining off energy, enthusiasm, sociability. I’d
rather stay home in my nightgown now than go out, or have people here, although
I can still make myself do both, am glad when I do. It’s good for my soul, but
I’m losing my coping capacity.

I’m starting to experience “leukemia fog,” similar to what friends who do
chemo describe as “chemo fog.” I have a new kind of low grade anxiety about
forgetting, not being quick, not feeling quite up to managing new experiences.

In April I started to learn how to post my CaringBridge entries to the
Ethical Society website. It was complicated and confusing, but usually if a
skilled computer person walks me through techy sequence a few times, I can pick
it up. For a variety of not me reasons, we ended up in futile loops, so I set
the project aside. Ethical’s webmaster posts my entries. This month someone
offered again to help me, but after four months, I don’t feel confident in my
head. My memory isn’t failing; it’s my sense of adequacy, of competence.

CaringBridge sent a notice this week about “exciting new changes to your
CaringBridge website.” So “updating your site. . . is simple and stress free.”
Not it isn’t. I don’t want to update anything, don’t want to stumble around
trying to figure out how to make changes. I hate feeling confused, unequal to
the task. I hate the isolation and loneliness of incompetence. I tell myself
it’s cancer cells in my blood interfering with mental tasks. It’s not me. But it
is me. This is me after two years of leukemia.

The following quote is another example. I forgot to note page numbers before
returning the book to the library. I’m an old English teacher; If I copy from my
neighbor, I document it. I forgot, but it’s still a great quote.

“The grieving need someone to say, ‘I see you, I hear you, I understand you
are hurting and you can tell me more.’ It is witnessing . . . . I may need a
little cheering from the sidelines, but just show up and be there for me. . . .
a true friend will just be present to another’s grief, even if that grief seems
inconsolable; an empathetic human presence brings comfort.” (1)

My closest companions in the loneliness of cancer are those who have it. My
youngest brother’s wife was diagnosed last November with colon cancer. She
participated in aggressive, extremely painful and difficult interventions. I’ve
been sending her “thinking of you” cards and notes often since then, and last
month she finished chemo. To the extent her chemo allowed, she’d send notes
back, and my brother would call with updates.

This week she said all her tests have come back normal. She’ll have C-T scans
every three months for a year and another colonoscopy in Oct. Her strength is
returning but she has severe neuropathy in her fingers and feet she’s learning
to live with. I am so relieved and happy with her news. I’m coping less well my
cancer, but don’t want anyone else to have it. Especially people younger than
me, people I know and love. It really is easier to be the sick person than to
anguish over a sick person you love.

Another friend, whose cancer has metastasized to her lungs, tells me doctors
can’t do anything more for her. We’ve begun exchanging emails, agree sitting at
a keyboard typing is about all we feel up to doing, but sharing what we’re going
through feels good. She doesn’t have the energy to walk in the California heat;
I don’t walk much myself. Cancer will get us both, but I don’t feel lonely
sharing with her because she is honest, let’s me be honest.

When I went to China with Peace Corps, because I was a Master Gardener, I
hoped to do a secondary gardening project and took the thousand page Rodale
Encyclopedia of Organic Gardening
with me. But my Chinese supervisors
wanted English teachers only; they’ve been master gardeners for 5,000 years. So
I didn’t help students garden in China, but sometimes I was lonely as a
volunteer, and to comfort myself, read articles in Rodale, thought about home
and compost piles and friends my age. I loved the young Peace Corps volunteers,
loved my younger Chinese students, but missed people like me: old, with shared
cultural memory, gray hair and the seasoning of flaws.

My favorite entry from Rodale, even today, is Sheep, maybe because
sheep herding is a lonely job.

“Sheep like affection. One reason for the renown of the Basque shepherds is
their constant attention to each and every sheep in their flock. Soothing talk,
removing briers from their ears, and occasionally rubbing their noses and chins
keep them contented and good producers.” (2)

I keep the Rodale Encyclopedia on the shelf beside my bed. It’s one
of my unfailing, life-long sources of comfort in loneliness, a good book. I read
about the Basque shepherd, and Hibiscus. My Chinese name, Peng HuiRong, means
wise old woman – hibiscus flower. My generous, always encouraging Mandarin
teacher gave me the name. Hibiscus is a genus of the mallow family;
Rosa-sinensis, the encyclopedia calls it, China rose or rose of China,
also shoeblack plant because its flowers are used in the tropics to polish
shoes. How satisfying to be named for a practical as well as beautiful plant.

A friend brought me ripe tomatoes from her garden this week. Sometimes we
share our heartaches, mostly we acknowledge them in silence. Her gift reminds me
of a favorite Chinese poem, “Visitors,” from another beloved book I took to
China, Czeslaw Milosz’s anthology of international poetry, A Book of
Luminous Things
. The last lines say,

When someone calls at my thatched hut
My son brings me my straw hat
And I go out and gather
A handful of fresh vegetables.
It isn’t much to offer,
But it is given in friendship. (3)

These caring bridge entries comfort me, too. Written conversations with
people who share my cancer journey, “soothing talk” with those who leave
comments, a sense of connection with those who do not. I do feel your presence
in my life. Please know you help me bear my burdens.

Beginning August 14 I’ll post twice monthly entries.

1. Joe Primo, The Business of Grief, At the End of Life; True Stories
About How We Die
, ed. Lee Gutkind, 2011.

2. Sheep, The Encyclopedia of Organic Gardening, ed. J. I. Rodale,
1959. 973.

3. Tu Fu, Visitors, A Book of Luminous Things; An Anthology of
International Poetry
, ed. Czeslaw Milosz, 1996. 283.

NOTE: The ideas and opinions in this post do not necessarily express the thoughts or opinions of the Ethical Society of St. Louis or its leadership.