Warning: This poem contains intense material. Highlight to read the warnings, some of which are spoilers. It features chronic pain, a mysterious and miserable health condition, therapeutic abuse and manipulation, medical abuse and manipulation, ineffective care, vulgar language, messy medical details, everything is awful and nothing is helping, religious abuse and manipulation, angst, and other challenges. This may be particularly hard on readers with chronic health problems and/or a history of abusive caregivers. If these are touchy topics for you, please consider your tastes and headspace before reading onward.
"My Heart Is a Prison"
The first time Tala Lewis came to
the Women's Chronic Pain Group,
she confessed, "I don't want to be here.
I only showed up because my shrink
forced me. She said that she wouldn't
treat me unless I joined a support group."
"Fire the bitch," Minxie said at once.
Tala twitched. "Um, that sounds ...
pretty extreme," she said.
"Yeah, so what?" Minxie said.
"Don't wait until she fucks you over
even worse. Get out now. If you like
therapy, find someone competent."
"I don't like therapy, but I can't
find a doctor willing to look into
my physical symptoms unless
I have someone else treating
my 'obvious mental issues,'
and that sucks," said Tala.
"If you don't want to be here,
then you can leave. We won't
force you to do anything that you
don't want to do," Randie said.
"We'll even cover for you if
your hija de puta shrink tries
to check up on you here."
"Thanks, but ... this is
the first place anyone has
taken me seriously, let alone
taken my side," Tala said.
"I think I'll stay, at least
through tonight's session."
"So, would you like to tell us
how your body is bothering you?"
Amanda invited. "No obligation,
but sometimes it helps."
"Yeah, even if it's just
a rousing chorus of 'Wow,
that sucks,' it's nice to have
the sympathy," Minxie said.
"I don't know what's wrong,"
Tala admitted. "It's just a mess.
My head hurts, my back hurts,
my belly hurts, and often the pain
moves around from place to place."
"That totally sucks," said Minxie.
Tala gave a broken laugh. "Yeah.
I break out in pimples and weird rashes.
Nobody can tell me why, even though
I've been through a battery of tests.
It's an enigma wrapped in a bear trap
stuck in a tar baby that is on fire."
"I went through that with lupus,"
Amanda said. "For the longest time,
nobody had any idea what could be
the problem. Have you tried --"
"If I hear that one more time,
I'm gonna scream," Tala said.
"Have you tried exercising?
Have you tried eating better?
Have you tried not being sick?
My heart is a prison of Have you tried."
"I'm sorry," Amanda said. "If you want
sympathy instead of troubleshooting,
then we can do that. People have
different preferences, that's all."
"I don't know what I want,"
Tala said, putting her face
in her hands. Spiral curls
fell forward in a dark curtain.
"I've tried so many things, and
none of it has really helped."
"Would you like tell us about
some of them?" Amanda said.
"Well, there was the Bible study
that I had to go to," Tala said,
sitting up enough to look at her.
"I'm a good Christian but it's
not medicine, you know?"
"What did your priest say
about that?" Randie wondered.
"Suffering builds character,"
Tala said dryly. "If that were
true, I'd be a saint by now."
"Well, 'suffering builds character'
is something only said by people with
a vested interest in continued suffering,"
Minxie said with a snort of disdain.
"I've heard that a lot, along with
'Poor people have to suffer,' and
it's all pendejadas," Randie said.
"If it were true that 'whatever
doesn't kill us makes us stronger,'
then women would all be Valkyries
or Furies by now," Minxie said.
"Or other things," Amanda added.
She had fixed her lupus by becoming
a werewolf, but nobody mentioned that.
Tala chuckled. "I am now imagining
a Valkyrie in a wheelchair," she said.
"If I could still do art well enough to take
commissions, I would put it on a t-shirt."
"I'd buy that," the other women chorused.
"Well ... no promises, but maybe I can
give it a try," Tala said. "I used to work
at an art gallery, but I lost that job because
of my health. I do a little art but now it's all
freelance, paint a thing and see if it sells."
"We know better than to make demands
of anyone," Amanda said. "All our promises
are prefaced with 'body willing' or the like."
"Thanks," said Tala. "I've been pushed
into art therapy, too. I'm already an artist!
If painting things was gonna help, then I
would have noticed it already. I don't need
to pay a hundred bucks an hour for that."
"No shit," Minxie said with a nod.
"Even the pain diary didn't help,"
Tala said. "I had high hopes for that,
because science is pretty solid, but
I couldn't spot any patterns, and
neither have any of the doctors."
"I'm sorry to hear that," Amanda said.
"At least they were looking, though."
"Some of them were," Tala said.
"Now most of them think that it's
all in my head. I'm getting scared
to try more tests and drugs, because
some of those have made it worse,
and those guys don't like backtalk.
Sometimes it just fills me with rage."
Margaret leaned forward, her long skirts
rustling around her ankles. "If you like, I
could accompany you to some appointments
and insist those people do their jobs properly,"
she said. "You pay them. They work for you.
They don't get to dictate what you do with
your body. It's their responsibility to fix it,
not to dictate your whole life for you."
"Hear, hear," Minxie said. "I wish
more health workers understood that."
"We've all had to deal with our own sorrows,
dear, whether those of our bodies or those
caused by other people," Margaret said.
"We could drown our sorrows in horchata,"
Randie said, opening her cooler. "I
made some fresh this morning."
"Here's to figuring out the mystery,"
Amanda said, grabbing a bottle.
"I'll drink to that," Tala said.
* * *
Tala Lewis -- She has caramel skin, brown eyes, and loosely nappy black hair. She suffers from chronic pain but has yet to obtain a solid diagnosis, just guesses and descriptive diagnoses. Her symptoms include headaches, backaches, and abdominal pain. Often it migrates slowly around her body. Her skin goes back and forth between painfully dry and too oily. It breaks out in pimples and rashes. None of it seems to form a pattern and keeping a pain diary is an exercise in frustration. Tala has been through a battery of tests and treatments; on several occasions, those have actively made matters worse. This makes her reluctant to risk more of the same, but everyone refuses to help her at all unless she meets their demands. These have included keeping a pain journal (no matter how ineffective), doing Bible study (spiritually compatible, but devoid of a cure), and attending a support group (even though she didn't want to). Tala used to work at an art gallery but lost her job due to her illness. She is an artist, but finds it difficult to make anything now, and all her work is influenced by pain somehow.
See Tala's Bible study pages.
This mood diary with pain tracking includes a cover page, positive thoughts, mood words, daily mood trackers for January-June and July-December, pain diary daily pages, location and severity of pain, weekly goals, and appointments.
Here is Tala's chronic pain art.
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.
Randie-- She has tinted skin, brown eyes, and long shaggy black hair. She is Hispanic.
This is Randie's wolf form.
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.
After becoming a werewolf, she returns to college with a major in Linguistics and a minor in Cultural Studies -- but what she really wants to explore is the lore of werewolves.
Lupus affects the mind and body. The butterfly rash is among its common symptoms.
These were Amanda's symptoms:
The most common symptoms of lupus, which are the same for females and males, are:
• Extreme fatigue (tiredness)
• Painful or swollen joints
• 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
Margaret Behan – Arapaho/Cheyenne – Montana, USA (age 67)
The Grandmothers Moon
* * *
People assume you aren’t sick unless they see the sickness on your skin like scars forming a map of all the ways you’re hurting. My heart is a prison of Have you tried?
Have you tried exercising? Have you tried eating better?
Have you tried not being sad, not being sick?
Have you tried being more like me?
Have you tried shutting up?
Yes, I have tried. Yes, I am still trying, and yes, I am still sick.
Sometimes monsters are invisible, and sometimes demons attack you from the inside. Just because you cannot see the claws and the teeth does not mean they aren’t ripping through me. Pain does not need to be seen to be felt. Telling me there is no problem won’t solve the problem.
This is not how miracles are born.
This is not how sickness works.”
― Emm Roy, The First Step
Chronic pain is notoriously hard to diagnose and treat. Victims may be put through many rounds of testing, often with little or no benefit.
Bad therapy can do serious harm. Among the warning signs of bad therapy is when a counselor orders or forces a client to do things. Giving people advice rarely works; changing behavior requires modeling the desired performance. Read about how to fire a therapist.
hija de puta f (plural hijas de puta)
1. feminine equivalent of hijo de puta
hijo de puta m (plural hijos de puta, feminine hija de puta, feminine plural hijas de puta)
1. (derogatory, vulgar) son of a bitch
Literally, hija de puta means "daughter of (a) whore."
"I cannot forecast to you the action of Russia. It is a riddle wrapped in a mystery inside an enigma; but perhaps there is a key. That key is Russian national interest."
-- Winston Churchill
Meaning: nonsense, ridiculous actions
¡No digas pendejadas! (“Don’t talk nonsense!)
-- Mexican Slang English
Disability can impact work, require someone to quit, or get them fired. Some careers suit people with disabilities. Freelance art is a good choice for someone with variable function, because you can work on good days and rest on bad days.
Art therapy comes in various styles. There are different ways to do it, and you can try some at home.
Horchata is a rice drink with lots of tasty recipes.