ysabetwordsmith: Cartoon of me in Wordsmith persona (Default)
[personal profile] ysabetwordsmith
This poem came out of the September 5, 2017 Poetry Fishbowl. It was inspired by prompts from [personal profile] readera, [livejournal.com profile] freshbakedlady, [personal profile] ng_moonmoth, [personal profile] librarygeek, and [livejournal.com profile] rix_scaedu. It also fills the "magical creatures" square in my 9-3-17 card for the [community profile] ladiesbingo fest. This poem has been co-sponsored by [personal profile] mashfanficchick and [personal profile] ng_moonmoth. It belongs to the Moon Door series.


"Accommodating Celebrations"


Holidays are hard on
people with disabilities,
especially the variable kind
where it's difficult to predict
what will be possible or not
on any given occasion.

By now, the various members of
the women's chronic pain support group
have learned how to cope with this.

Randie hosts small parties at
her little house, each of them
with a short timeframe and
a specific closing point.

Sometimes it's nothing more than
Randie and Hilla chatting quietly
with Vienna and Mika over tea, and
Lucille passed out on the couch.

Alexandria hosts larger parties
at her house, which is huge and
also fully accessible so everyone
can move through it easily.

The kitchen, dining room, and
living room are all one wide open space
so that folks can team up to cook.

Behind the house, an accessible patio
offers a firepit, a sculpture fountain,
and two different sitting areas.

A winding brick path wanders past
a birdfeeding station to a waterfall feature,
visible from the house. They attract wildlife for
easy viewing, all tended by a live-in gardener
who lives in the dome with the other help.

The yard beyond has been rolled flat
and trimmed short, its little clearings
divided by bushes and flowerbeds.

Wide grassy paths connect the clearings,
and a mix of evergreen and deciduous trees
crowd along the far edges of the yard.

There is enough space for people
to sprawl in the living room to socialize
or retreat to the family room downstairs
if they need something quieter.

The wolf den, too, is available
for pack members who need
that kind of comfort.

Nobody minds if Hilla and
Alexandria take over the kitchen
to make a feast while Minxie tries
to talk someone into a wheelchair race
and Belladonna is hiding in the yard and
Lucille is crashed on the couch again.

The coffee table in the living room
is covered with puzzles and board games.
Downstairs, the glass table in the family room
has all of the arts and crafts supplies.

Both locations are usually busy,
especially if Everett and Harry are
building something together.

Edith totters around the house
taking snapshot after snapshot for
her Don't Worry, Be Happy photo album.

It's okay if the werewolves gorge on
turkey and stuffing until they can't move,
and then conk out in the family room
while fat deer bound through meadows
on the flatscreen television above.

It doesn't matter if they need
accommodating celebrations.

It only matters that the holidays
get celebrated with people who
care deeply for each other.

* * *

Notes:

Randie -- She has tinted skin, brown eyes, and long shaggy black hair. She is Hispanic.
Randie in wolf form

Hilla -- She has pale skin, dark blue eyes, and short white-blonde hair.

Multiple Sclerosis (Hilla's typical symptoms are italicized)
Multiple sclerosis signs and symptoms may differ greatly from person to person and over the course of the disease depending on the location of affected nerve fibers. They may include:
Numbness or weakness in one or more limbs that typically occurs on one side of your body at a time, or the legs and trunk
• Partial or complete loss of vision, usually in one eye at a time, often with pain during eye movement
• Prolonged double vision
Tingling or pain in parts of your body
• Electric-shock sensations that occur with certain neck movements, especially bending the neck forward (Lhermitte sign)
Tremor, lack of coordination or unsteady gait
• Slurred speech
Fatigue
Dizziness
• Problems with bowel and bladder function

Relapsing-remitting MS (RRMS)
RRMS — the most common disease course — is characterized by clearly defined attacks of worsening neurologic function. These attacks — also called relapses, flare-ups or exacerbations — are followed by partial or complete recovery periods (remissions), during which symptoms improve partially or completely and there is no apparent progression of disease. Approximately 85 percent of people with MS are initially diagnosed with relapsing-remitting MS.
Hilla in wolf form

Vienna Williams -- She has sorrel skin, brown eyes, and long black hair with just a hint of wave. She is 35 years old. She is transgender and suffers from chronic pain due to complications following sexual realignment surgeries.

Mika Walker -- She has fair skin with a hint of gold, dark almond-shaped eyes, and long straight hair of dark brown. She is Asian-Australian, and currently 19 years old. Mika has migraines. They are worst as part of PMS. They come with pounding pain, usually on the right side of the head, some sensitivity to light but much more to sound, and vertigo. Often her migraines cause nausea and vomiting. Activity makes the pain worse. She spends a lot of time in bed, but has trouble sleeping. After a migraine, she has a headache hangover.
So far, Mika has tried a wide variety of medications but hasn't found anything that helps enough to keep using. She employs ice packs, tai chi, and meditation to cope with the pain. She hasn't decided yet whether acupuncture really helps or is more of a placebo effect.

Mika's triggers are italicized.
Many factors have been identified as migraine triggers.
The normal hormone fluctuations which occur with regular menstrual cycles may predispose some women to experience migraine headaches.
• Some types of oral contraceptives (birth control pills) can trigger migraines.
• Various foods such as:
o Red wines
o Aged cheeses
o Preservatives used in smoked meats (nitrates)
o Monosodium glutamate
o Artificial sweeteners
o Chocolate
o Dairy products

• Oversleeping
Alcohol beverages
• Stress
• Exposure to strong stimuli such as bright lights, loud noises, or strong smells.
Changes in barometric pressure have been described as leading to migraine headaches.

Lucille -- She has tawny-fair skin, amber eyes, and straight chestnut hair to her shoulders. Lucille suffers from fibromyalgia. It manifests primarily as chronic muscle pain, stiffness, and fatigue. She is therefore enthusiastic about trying new treatments, but she doesn't always talk about them or how she feels. She once got into a special trial and didn't mention it until the drug came on the market, only it turned out that half a dozen other people would've qualified
for compassionate use earlier than that, and it was two weeks before anyone spoke to her again. Lucille is a cat person, not a dog person. She has a cat's tendency to fall asleep anywhere and everywhere, sometimes in odd positions. She also gives a sleepy, slit-eyed smile. Although she likes the idea of trading in her fibromyalgia for lycanthropy, she doesn't want to become a wolf -- so she is seeking werecats. (Eventually she makes a contact through the French and becomes a lynx.)

Lucille's symptoms are italicized:
Symptoms of fibromyalgia include:
Chronic muscle pain, muscle spasms, or tightness
• Moderate or severe fatigue and decreased energy

• Insomnia or waking up feeling just as tired as when you went to sleep
Stiffness upon waking or after staying in one position for too long
• Difficulty remembering, concentrating, and performing simple mental tasks ("fibro fog")
• Abdominal pain, bloating, nausea, and constipation alternating with diarrhea (irritable bowel syndrome)
Tension or migraine headaches
• Jaw and facial tenderness
• Sensitivity to one or more of the following: odors, noise, bright lights, medications, certain foods, and cold
• Feeling anxious or depressed
• Numbness or tingling in the face, arms, hands, legs, or feet
• Increase in urinary urgency or frequency (irritable bladder)
Reduced tolerance for exercise and muscle pain after exercise
• A feeling of swelling (without actual swelling) in the hands and feet

Alexandria Paxton -- She has tawny-fair skin, hazel eyes, and short chestnut hair. She is 29 years old. She is the wife of Everett and mother of Lily. Alexandria sustained permanent damage from childbirth including spinal injury with partial paralysis from an epidural, and severe abdominal pain from an emergency caesarian section. She is a graphic designer, currently on maternity leave.
Alexandria in wolf form

Michelle "Minxie" Sullivan -- She has porcelain skin, green eyes, and straight red hair to her chin. A car accident damaged her legs and spine, leaving her paralyzed from the hips down. She also suffers from chronic pain. She thinks that relying on drugs is a bad idea, and often gets into arguments with Soma or other people who favor such things.

Brenda "Belladonna" Damyanov -- She has pale skin and blue eyes. Her straight black hair is cut in a shaggy chin-length style and streaked with blue. Both ears are double-pierced at the lobes with industrial piercings above. She also has a nostril ring on the left side, and a ring in the center of her lower lip. Belladonna likes both dark colors and bold patterns such as stripes or houndstooth. Her favorite necklace is a razor blade. She is currently 18.
Belladonna has nerve damage and chronic pain from self-harm. That makes it difficult to use her left arm, although the right is not quite as bad. She is also a survivor of sexual abuse and has depression. Because nobody trusts her with narcotics, the pain is left essentially untreated; nothing else has helped much. So she resorts to self-medication with whatever she can get, sometimes street drugs, and other times just drinking herself into a stupor. Belladonna greatly admires Soma. Despite Belladonna's attempts to score from her, Soma resists providing any connections because she doesn't trust Belladonna with drugs either -- an ongoing bone of contention, since Soma recommends them to everyone else.

Everett Paxton -- He has pinkish-fair skin, hazel eyes, and short wavy ash-brown hair. He is 35 years old. He is the husband of Alexandria and father of Lily. Everett is a handyman who runs a construction business. He has already renovated their house once for wheelchair accessibility and has recently turned part of the basement into a werewolf den.

Harry Armstrong -- He has butterscotch skin, brown eyes, and very curly black hair that bushes out from his head. His heritage includes African, European, and a little Chinese. He is married to Felice. They have been trying to have children for years, so far with no success. Harry is an artist. He does large-scale paintings on canvas. He also makes murals. He works in bright colors and crisp shapes, sometimes with characters. Harry only makes occasional sales, but they tend to be lucrative. So their family budget generally uses Felice's income for regular expenses, while Harry's income finances capital equipment, vacations, and other big incidental things.

Edith Davenport -- She has fair skin, hazel eyes, and short ash-blonde hair that is starting to go gray. She is 50 years old. Edith suffers from arthritis, especially in her hands and legs. She enjoys hiking and is determined to keep up as much as possible with it. She uses a walking stick on the trail, or a cane otherwise. Mild exercise helps keep her joints flexible. Too much makes her condition flare up, and then she gets stuck in bed. Edith has held onto her teaching career, but had to step down from full-time to substitute work. Despite the chronic pain, she is generally cheerful. Edith believes that happiness is a choice, which works for her, but it frustrates or offends some other people who can't just "choose to be happy."

* * *

Randie's house is an old bungalow. See the exterior and floor plan. A kitchen nook access to the stairs from both the living room and kitchen make this an efficient floor plan for such a small house. The dining room has a bay window. A sun parlor and second floor sleeping porch were amenities more often found in more generously proportioned homes.

Alexandria's house has gone through some remodeling. This contemporary, ranch style house design also features universal or wheelchair access. The efficient floor plan is spacious with an open easy flow. The two covered porches are particularly large.

To make the front door accessible, the steps were torn out and replaced with a concrete ramp that glows in the dark. Glowstones were also added to the gravel in the driveway.

To make the interior accessible, walls were torn out between dining room and living room, living room and foyer. Doors were torn out between kitchen and living room, living room and master bedroom. The remaining doors in the master bedroom have been automated. There used to be two walk-in closets, of which one was sacrificed to make the bathroom bigger and more accessible, the other being remodeled for better access as well.

Originally, the bathroom was the only part of the basement fully finished. The other two rooms just had bare concrete floors and walls and were intended as extra family room or bedroom space as more children arrived. The master bedroom has subsequently been renovated as a safe room for werewolf nights, designed with large logs and sculpted concrete to resemble a wolf den. Green indoor-outdoor carpet resembles grass, and there is a pool for drinking or playing. The window and front of the room have sturdy iron grates, with shutters for privacy.

Immediately behind Alexandria's house, the back porch lets out onto an accessible patio with a firepit, a sculptural fountain, a sitting area under a pergola, and another sitting area on the wooden deck. The right side of the path connects to the porch near that metal fence. The left side extends into the yard and heads toward the birdfeeding station and the waterfall feature.

A birdfeeding station is visible from the house and accessible from the paved path. It lies between the patio and the waterfall. That's their gardener refilling the feeders.

A waterfall spills through a series of pools. The brick path connects to the accessible patio and from there to the back porch of the house. In the background, you can see the 2-story geodesic dome home that houses the gardener and other live-in help.

Much of the lawn has been rolled flat and covered with very short grass, in between beds of flowers and small bushes. Plentiful benches provide a place to rest at short notice. More flowerbeds define the edges of the yard, keeping it tidy without looking too formal. Wide, grassy paths connect each clearing to the others. The minimum clearance is 5' to allow two wheelchairs or walkers to pass each other comfortably.

Everett finishes one room in the basement as a family room. The pool table has top inserts for shuffleboard, cards, and other games. The couch folds out into a queen-size hide-a-bed. The bar is stocked with festive nonalcoholic beverages on display -- including a proper soda fountain -- and alcoholic ones in the locked liquor cabinets. The dining table is made from bulletproof glass and seats six.

This bathroom lies between the other two rooms of the basement. The roll-in shower with bench makes it easier to clean up when someone isn't moving well.

The larger room is landscaped into a wolf den along these lines of this model. Everett sculpted concrete into a cave with a lounging pad and lookout spot above. Then he added real logs and boulders to create a realistic forest scape. The floor is covered with green indoor-outdoor carpet to simulate grass. The drinking pool looks similar to this.

The refrigerator has vertically divided doors for freezer access. The sink in the island has a roll-under space, and the dishwasher beside it is designed for disabled users. The rangetop and oven (not visible, off the left side of the picture) are separate so that the rangetop can have roll-under space. The cooking surface uses induction heating for added safety. While the large microwave is completely out of reach, a lower cabinet (not visible, off the left) holds a small microwave and a toaster oven. The counters have low pull-out shelves between drawer and cabinet space.

In the background of the waterfall, you can see the 2-story geodesic dome home that houses the gardener and other live-in help. Here is the exterior. The wooden stairs go up to the second-story entrance. The lower floor has a living area, kitchen, master bedroom with ensuite bath, half-bath, and office. The upper floor has a living area, kitchen, half-bath, and two bedrooms sharing a jack-and-jill bath.

* * *

Disabled people can enjoy many activities. When organizing parties or other events, make sure to include some accessible activities so everyone can have a good time.

Living with disability requires many accommodations. Here are some things that help people with mental disabilities and introverts. There are holiday tips for accommodating children and adults with disabilities.

See Edith's Don't Worry, Be Happy photo album.

(no subject)

Date: 2017-09-08 09:54 pm (UTC)
From: [personal profile] mashfanficchick
I really loved this, and got a lot out of it. I'm very happ I helped sponsor it. :)

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