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invisiblenotbroken · 7 years

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Gas Lighting: Searching For Chronic Illness Diagnosis in American Healthcare System (Its' funnier than it sounds and just as frustrating)

Did I get lucky! I got to make a new friend. I hope you enjoy listening to Jen. She is an amazing poet and at the end of the interview you can hear two very powerful poems. She is hilarious and strong. She has been dealing with being sick and frail even though she has made massive changes (loosing 100lbs) and has just started in on her 40's. We talk about parenting with a chronic illness, the American healthcare system (buckle up its' about to get political), the importance of art when you can't get out of bed, and how important friendships are especially when you are dealing with chronic invisible illness.

Ms. T's Answers {More Bad Ass Than Mr. T}

Jen Toal (with her amazing poetry she did not Age 40

Conditions

PTSD, Chronic Pain, Extensive nerve injury nerve injuries in both arms, Not Quite Fibromyalgia (is that a thing?), planters fasciitis, Anxiety/Depression

(...Hang on, maybe Ehlers-Danlos?? Amazing the things you can learn doing podcast interviews...) After watching Jen through the interview I was impressed at all of the crazy shapes she was making while stretching. She also has the swan deformity and so many other symptoms of the disorder I have.

I can remember school officials started stepping in around middle school to try to help Mom and I address my symptoms. They couldn't find much obviously wrong with me, except for some scoliosis. In high school I was given special locker accommodations each year to try to help reduce the load on my body and as an eighteen year old, our family doctor explained to me that I was experiencing the same daily pain as most eighty year olds. This was before the injuries of my twenties and thirties.

I didn't get far working with that doc because growing up means losing access to health care in our country.

In my early twenties I was working in tech support and saving for further college when all the nerves on both my arms were blown out by repetitive stress from typing. I spent the next several years in surgery and disabled. I got LOTS of doctor attention, but only on the subject of my work injuries. They were there to repair me from what they had done, not heal me overall.

The worst part of those years was being unable to draw.

In my thirties I found reasons to stop giving up on my life, most notably my husband, John, and our sweet child. John and I changed so many of our daily habits that together we lost three hundred pounds.

https://www.facebook.com/shapeshifterconfessions/

Losing 45% of my pre pregnancy body weight has done amazing things for my health, but it's not the miracle cure it *looks* like from the outside. For one thing, jumping up out of my sick bed to chase my snugly little kettle bell around gave me a wicked case of Plantar Fasiitis. It's a remarkably painful addition to my dappling of symptoms, but was acceptable collateral damage to me.

1. Who were you before your illness became debilitating?

A child.

2. Is there anything you would do if you were not sick?

There are so many things. I would have so much more of a career. I would travel. I would go out in the evenings and be around people. I would make so much more art.

3. What should other people know about our daily life?

That it's super easy for them to forget, but it's always there, reminding me. That it's exhausting to manage pain.

4. What would make living and moving in the world easier for you?

Single Payer Healthcare and Universal Basic Income.

In my twenties I spent a lot of time with people who liked to play, "What if we won the lottery??" My answers always began with access to doctors and therapists.

5. Life hacks?

Tennis balls are my latest favorite backpack staple. I sit and lean on them for point massage. They are especially magical for car trips, which have always been rugged for me.

My backpack itself is my favorite tool, but like many medications that come with side effects, the magic bag does sometimes get ridiculously heavy.

6. Support from family or friends?

I married really well. My husband is marvelously supportive and encouraging. My mother would help more if she were closer.

Friend community cares from afar, but we are all spread so perilously thin...

I saw this art show with a display that said, "We are living in an era that is testing the limits of everyone's compassion." I worry about all of us. Times are tough, and getting tougher, and I don't feel like my communities have the space to hold me up. Not because they don't care, but because they're fighting so hard to keep themselves going.

7. Do you find that people do not believe you are sick because of your appearance? How has this affected you positive or negative?

Yes. All the time. It's horrible. I spend a bunch of time disappointing the humans around me because I look so healthy, especially after my weight loss, but I am still frustratingly limited.

8. How has this affected your relationships?

It torpedoes them sometimes. On the other hand, it can allow for deep bonding when we understand each other.

9. What are you afraid to tell even the people closest to you?

How bad the pain is. How pervasive it is. How scared I am of the future.

10. Does the fact that your disease is invisible change how healthcare professionals treat you?

Yes. They often disbelieve me. I've been accused of being drug seeking. Which is pretty funny, given how much time John spends trying to convince me to take something.

11. Best coping mechanism?

Diffuse awareness. Forgetting. Drawing.

12. Favorite swear word?

John says if hell counts, it's hell. Lol

I have a hard time picking. Shit, fuuuuuuuuuuuuuck, godsdammit.

13. What are you the most fearful of and what are you the most hopeful for in the future?

I'm terrified that I'll be unable to support my family in the ways they need me. I'm hopeful about the ways I have learned over the years that people make their livings with skills I totally retain access to, even as my spacesuit gets quietly wonkier...

Cardboard Decades

when i say ricky was my best friend, what i mean is

he was my first consensual sexual partner

i turned 5 while mom and i lived in his mother's house

he was 6

i once pulled his little brother, fallen-comrade-style,

across train tracks in the very nick

wouldn't know for decades how scared i should've been

they taught me prank calling and ladybug sailing

how to be kind to the kind doberman

and keep my dolls far away from the angry one

ricky and i were softness and exploration

in an already cruel and confusing world

i remember being 8 or so

sun-drenched in the back of my grandmother's very nice car

i wouldn’t know for decades about love languages

but i knew in california i was given things, but few hugs

and in texas, hugs, but few things

i preferred hugs

but it was well known that "daddy warbucks"

and family had more money than made any sense

and they didn't get as much time to be affectionate

so it made sense

that they'd want me to have touchstones of affection

when i went back to my mother's wars

how could they know?

mom would send them letters,

as she says, "full of things we never did.

places we were never going to be."

it wasn't just that we couldn't get above the poverty line

i wouldn’t know for decades the term “human trafficking”

my poor mother.

i also hadn't learned the different ways a car can sit

that day i was walking home

with ricky

mom pulled over

countenance confusing

told me only i could get in

drove away

before telling me we'd never go back

i would never say goodbye

i wouldn’t know for decades

that the reason no one understands

what i mean when i say

we “moved a lot” when i was a kid

is because i don't understand

what i should be saying

is we were homeless

for more of my childhood

than i had realized.

only way to explain

we have to move whenever someone gets mad

my doll protects me from the mean girl

i share a bed with

we take my most evil stepdad back

eleven times

he's charming

and when he's around churches don't have to bring us things

the motels. national parks. so many places

i stop calling where i sleep anything other than "the house"

know if i learn the path from house to grocery, it’s probably time to go

try out different versions of my name in different schools

sometimes compassion is a shovel to the gut

often my mother wakes up screaming

i’ll never know how many trains she pulled us from the teeth of.

only reluctantly came to see the damage of

rootlessness on a childhood

perpetual motion was our only way of survival.

i ran into ricky a couple years later

awkward amongst other kids

eons away from the life we had shared

i’ve been trying to shift my relationship with cardboard

dismantling all my boxes

learning to build some belief

i might just get to stay

advice i am giving myself

upon meeting new soul mates

stand solidly

if you are able

hold your form fluid

brace for beauty

and the way it always

knocks you over

notice press of globe

up through soles

marvel at the moments experience

and universal

shake hands

trade knees

compare the roads you have run

the trees you jumped out of

the places your jeans have worn through

skip right past groins and sex

this isn't that poem

and connection

can be better

for being less obvious

instead

press your belly buttons together

a meeting of absences

shared space to frame things

frame things

redo this if it

feels more truthful

consider the strengths of your mat

let the space placed around

your best work

have its own things to say

say things

out loud

experience is meant to be shared

and no one needs your

perspective

more than a soul mate

trade scars stories

(tattoos totally count)

tell each other tales of the ways

the world hasn't ended

even if it left a mark

breathe

feel belly press belly

laugh

you've been sucking down discord

all day

like too little sleep

too much wireless

and a fundamental disconnect

from how our species evolved

to thrive

agree to thrive anyway

slice out space for each other

in the places you

forget to feel shame

allow yourself

and each other

forgiveness

for everything you’ve ever believed was wrong with you.

there’s never been anything wrong with you.

except not knowing there was nothing wrong with you.

forgive yourself

for lying to yourself

in order to stay small

it’s okay to not be everything

we are all of us everything together

and we forget we don’t have to

do it alone

give up the notion

you may somehow

be on the same page

you’ve only just collided

from across the cosmos

the particular constellation

of harmonic convergences

your empty spaces

express

as you pass through each other

are not the same

as being the same

we are stronger for our differences

befuddling though they be

decide this is the game

and that you are always winning.

because you are.

#politica #friendship #chronic illness #chronic fatigue #Fibromyalgia #ehlers danlos #invisible illness #podcast #interview

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