ysabetwordsmith: Cartoon of me in Wordsmith persona (Default)
[personal profile] ysabetwordsmith
This poem came out of the January 19, 2016 Poetry Fishbowl. It was inspired by prompts from [personal profile] janetmiles and [personal profile] helgatwb. It also fills the "dusk" square in my 10-2-15 card for the [community profile] ladiesbingo fest. It has been sponsored by [personal profile] janetmiles. This poem belongs to The Moon Door series.

Warning: This poem contains some touchy topics. Highlight to read the warnings, some of which are spoilers. There are canon-typical discussions of messy medical details, chronic pain, lupus, emotional angst, introversion, social anxiety, exhaustion, lycanthropy, fear of persecution, disability issues, feeling useless, poor quality of life, struggling to make improvements, difficult decisions, and other challenges. While Randie isn't very good at this stuff yet, the other women are much more experienced in dealing with chronic pain and illness of all kinds. They apply appropriate coping techniques and support as needed. If these are sensitive issues for you, please consider your tastes and headspace before reading onward.


"Lupus in Fabula"


Hilla encouraged Randie to visit
the chronic pain support group.

"I do better alone," Randie protested.
"It's not good for werewolves to go
around other people; that just makes
everything harder than it has to be."

"I don't think you're doing as well
as you believe," Hilla said. "Besides,
the other women want to know more
about being a werewolf, and you're
more familiar with that than I am."

So Randie agreed -- albeit grudgingly --
to attend the next meeting with Hilla.

St. Ann's Transfiguration Church
was a handsome building of red brick
that enclosed a central sanctuary and
offered a variety of function rooms.

When they arrived at the meeting,
Hilla began by introducing Randie,
and then the rest of the members went
around the circle of soft blue chairs
to give their names along with
their chronic conditions.

"I'm Amanda Mancini, and I have lupus,"
said the last woman, her oval face
marked by a butterfly rash.

"Isn't that the Italian word for wolf?"
Randie said, leaning forward.

"Latin, originally, because the disease
'devours' the affected part like a wolf
ravaging its prey," Amanda explained.
"Lycanthropy comes from the Greek lykos."

"You sound like you know a lot," Randie said.

"I was in college when I got sick," Amanda said.
"I studied European cultures and languages,
took some classes in history and literature
and art. It was fun while it lasted. Then
this happened -- lupus in fabula,
the wolf in the story."

"Hilla made me come because
some of her friends want to be
werewolves," Randie said. "I think
it's nuts, but she's right about me
knowing what it's like to be one."

"Tell me about it," Amanda invited.
"I'm really sick, and I think that I might
be healthier as a werewolf, but it's still
a big decision. I need to know more."

"It's awful," Randie said. "Every month
my body tears itself apart and there's
nothing I can do about it. I can't have
friends or a social life or even a real job."

"That does sound awful," Amanda said.
"What are some of the limitations of being
a werewolf that cause those effects?"

"If people knew what I was, then they'd
hunt me down and kill me, or dissect me,
or something," Randie said. "I'm only
telling you people because you're
crazy enough to want this."

She went on to tell more stories
about feeling isolated and afraid,
how the lycanthropy had basically
destroyed her life in an instant.

The other women listened
sympathetically, but before long,
Randie was wilting in her padded chair.

"It looks like you're getting
all peopled out," Amanda said.
"Do you want to step outside
for a few minutes and recharge?"

"What?" Randie said blankly.

"The church has a healing garden,"
Amanda said. "Let's go outdoors
and stretch our legs a bit."

So Hilla and Randie followed her
a little way down the hall and then
outside to the rambling landscape.

It was later than expected,
afternoon shadows already
stretching long over the ground.

Ribbons of pavement and perennials
wound their way beneath the trees,
punctuated by individual benches and
small garden beds. The downspouts
from the church building spilled into
basins shaped like leaves.

Amanda paused first in a paved circle
with a stone slab full of plaques. "This is
our memorial garden," she said.
"I knew some of these folks."

They walked onward and came
to a round herb garden surrounded
by benches, where Amanda sat down
and let them choose their own seats,
even though Randie parked herself
as far from the others as possible.

Evening primrose perfumed the air
along with four-o-clocks and
moonflowers climbing up
a pedestal in the center.

When they moved on, the next feature
was a wooden swing tucked under a tree.
Hilla sat down on it and explained,
"Sometimes vestibular stimulation
helps disrupt the pain signals."

Randie didn't sit down, but
did admire the arrangement.

"I hurt whether I'm moving or
standing still, but not as bad if I
balance the two," said Amanda.

Presently they came to another nook
with benches and lantern posts
inside a cluster of bushes.

Randie was feeling better enough
to explore this one, poking around
in the different shapes of plants and
reading their little nametags.

There were honeysuckles
and mock oranges blooming
in pale, fragrant clouds under
the soft light of the lanterns.

At last they came to a pond
edged with big boulders and
dotted with white waterlilies.

Goldfish swam lazily in
the water, coming up
to mouth at the surface
in search of crumbs that
were not forthcoming.

Somehow dusk made it
a little easier to speak of things
usually left unspoken.

"It's really nice out here,"
Randie said. "Thank you
for showing me the garden."

"You're welcome," Amanda said.
"I like teaching new people about
coping skills. It helps me feel useful."

"I'm not ... very useful," Randie said.
"It's too hard to deal with people anymore.
I just stay home and work online instead."

"There are coping skills for that too,"
Amanda said. "You can learn how
to handle both chronic illness and
a social life, it just takes practice
and some different techniques
than you probably grew up with."

"We don't wish this to be
just us taking what we want
from you," Hilla added. "It
should be an exchange.
You help us, we help you."

"We have so much to teach
each other," Amanda said.

Randie spied a crust of
stale bread on the ground
and crumbled it into the pond
for the eager goldfish.

"Teach me," she said.

* * *

Notes:

Amanda Mancini -- She has fair skin often blotched with rashes, brown eyes, and long dark hair that curls at the ends. Streaks of gray are beginning to appear. She is 44 years old. Her heritage is primarily Italian-American. Amanda has lupus. She was in college when she got sick, studying European cultures and languages, with some classes in history and literature and art. Now she is fully disabled.

* * *

"Lupus in fabula" means "the wolf in the story," with the further meaning "speak of the wolf, and he will come" from Terence's play Adelphoe.

St. Ann's Transfiguration Church looks similar to this outside. See the lobby and the group therapy room. This is the floor plan.

Lupus ravages the whole body. The butterfly rash is one of the more common symptoms. There are ways to cope with lupus.

The most common symptoms of lupus, which are the same for females and males, appear below. Amanda's symptoms are italicized.
Extreme fatigue (tiredness)
• Headaches
• Painful or swollen joints

• Fever
• Anemia (low numbers of red blood cells or hemoglobin, or low total blood volume)
Swelling (edema) in feet, legs, hands, and/or around eyes
• Pain in chest on deep breathing (pleurisy)
Butterfly-shaped rash across cheeks and nose
• Sun- or light-sensitivity (photosensitivity)

• Hair loss
• Abnormal blood clotting
• Fingers turning white and/or blue when cold (Raynaud’s phenomenon)
Mouth or nose ulcers

Chronic pain can affect personality and relationships, requiring extra work to socialize. Coping techniques include forming connections and interacting with people to avoid the hazards of isolation.

The terms for lupus and lycanthropy both derive from words for wolves.

Introversion can be an adaptation to an overstimulating environment or other unbearable stress, such as chronic pain. It helps for introverts to develop phrases to indicate their need for private time, and find other ways to deal with being introverted.

There are instructions for designing church gardens and healing gardens. This one is both. The site map is similar to this. Here is the paved memorial circle. The herb garden is the seating nook directly below the paved memorial garden. Night-blooming and moonlight plants contribute to the soothing effects. A wooden swing is tucked under a tree between the two seating nooks. This is the seating nook nearest the pond. The garden pond has boulders around it. The decorative downspouts look like leaves.

Vestibular stimulation is among the techniques for coping with chronic pain.

Feeling useless is a common problem. It poses particular challenges for people with disabilities, because society often agrees with that idea. Learn how to stop feeling useless.

Helping others is a good way to help yourself. It offers many benefits. Explore some ways you can help people.

(no subject)

Date: 2016-01-22 03:08 pm (UTC)
mdlbear: the positively imaginary half of a cubic mandelbrot set (Default)
From: [personal profile] mdlbear
I am absolutely loving this series. Probably because I know so many people with chronic pain. I also need to check out the "feeling useless" links. Thank you.

I love this

Date: 2016-01-22 05:01 pm (UTC)
dialecticdreamer: My work (Default)
From: [personal profile] dialecticdreamer
The clincher for me is the way the others have already begun to enfold Randie in the group, as much as Randie will allow. They're trying to make this a peer relationship, and that MATTERS.

I like the subtle details of characterization, tucked among the description of the setting. That's not easy to do, so ... bonus points on technical merit!

I've been looking at resources for chronic pain, so thank you for MORE! *G* Every tool in the toolbox is helpful, or I don't keep it, so finding new ones to test out saves HUGE swaths of time.

Re: I love this

Date: 2016-01-22 11:38 pm (UTC)
dialecticdreamer: My work (Default)
From: [personal profile] dialecticdreamer
Keeping track of anything is not my best skill, and right now, it's like finding a unicorn!

Re: I love this

Date: 2016-01-23 07:02 am (UTC)
mama_kestrel: (Default)
From: [personal profile] mama_kestrel
That's what writing is for. Trigger lists. Coping skill lists. Checklist of what to do when stuff goes wrong.

My grandfather used to call that "making mental notes on paper".

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