Saturday, April 30, 2016

Writing, Thinking and Healing



A Facebook friend through Living with FSHD, Cara McDonald's post on Julia Kristeva, French philosopher and psychoanalyst was interesting research. Through Kristeva, I got the title for this month's blog.

I had to get a new living/dining room, hall floor this month due to wood under my carpet so old, a hole pushed in near my computer chair. My mom and step-dad decided to go ahead and talk to a neighborhood guy, Micky. He took one look, said we can get all this up and new wood laid in a day. Then there was the decision should it be new carpet, wood or linoleum that looks like wood? We went with the latter due to costs and it has that clean, new feel to it. Now I don't worry about my chair wheel getting sucked into the old wood vortex.

At the same time, I got a new wall unit air conditioner. It was a little crazy because my step-dad was just getting out of the hospital and I had to have my kids (all grown) come help move furniture onto my back porch for the flooring. Names not given to protect the innocent.

What else happened this month? One of my older daughters needed to move some of her furniture into the store on this property.. She was leaving the state in a few days. How do you write about painful situations and family? Get their permission? Some authors don't. After Erica Jong published a book, her mother said “you're writing my obituary”. This is something I'm learning about writing.

Memoir is writing about what's happened to you. And that includes my family. It's what I know although I don't know everything about them. There's no certainty about what any one feels or thinks in a situation. At least it's not static. If I write about what I remember from almost forty years ago, why am I doing it? It's exposing your life. Why does that particular memory need to be “out there” in the world? It's part of our past. Also, it's changed for the better.

I'm still looking for work under these conditions: My car/energy is going to limit me to work in my own town, not the nearest city. I need my P/C. Again my energy can only be stretched to part-time work. I'm getting help at SC Works and SC Voc Rehab.

Reading over my writing practise for the month, I thought; why don't I just publish it all and show how I do it. Part of this blog is to show how I'm learning to write. Suffice it to say there was twenty-eight pages of needing to pee, my butt hurting, and all the twenty-nine million distractions that led to one good line; " I am the cold Grand Canyon and have the capacity for loneliness."

This month, I've finished Sartre's “Nausea”. I noticed his detailed descriptions of every person's face in scenes. That must have been hard work! Not only does he describe facial characteristics, but their mood also. Describes their thoughts reflected in their faces. But did he really know what they were thinking? Every movement around him. So aware.
“The idea of the passage...(of time)...was still an invention of man.”
“I sank down on the bench, stupefied, stunned by this profusion of beings without origin: (the wind), everywhere blossomings, hatching's out, my ears buzzed with existence, my very flesh throbbed and opened, abandoned itself to the universal burgeoning.
“Existence is a fullness which man can never abandon.”

I'm still reading James Baldwin's “The Price of the Ticket”. Looked up the origin of Caucasian, and in my daily living, found myself thinking; did Jimmy Baldwin do his own dishes? (If I may presume to call him Jimmy.) To be able to write and think as he did, without the MFA...

What's interesting to me? Things that strengthen the writing and knowing.




Sunday, April 3, 2016

O' Happy French Spring Wings! Journal, Books and Movies

 I appointed a new name for my blog this month because I saw some FSHD people getting close to using it and I've used it forever talking about my scapula's. Way back in 1979 when I was at a clinic on The Farm in Summertown, Tennessee, I asked if anyone had seen shoulder blades “wing out” like mine and what could it be. Several midwives and a doctor examined me and hadn't a clue. Then one of the midwives said “It just looks like you're sprouting wings”. We all laughed and I felt astonished, then relieved just to be able to make light of it. Since then, I've entertained my imagination with the thought that I and other people with scapular winging are in the evolutionary process of growing wings. I never had any pain from the winging and was too poor for specialists. Never had a clue or thought it could be Muscular Dystrophy. No one in my extended family ever exhibited any symptoms. So that's how I got the term and I owe it to that midwife on The Farm. http://www.thefarm.org/

This month I've had my first bout with a UTI. I've been to the doc, have a culture growing somewhere in a petri dish (think that's how they do it), and was prescribed antibiotics. Is it related to the FSHD? It's possible with the weakening trunk and pelvic floor muscles. But my mission to pay closer attention to self-care just got amped up a notch a la cleaner, more nutritious foodstuffs, more water and continuing exercise. Of course, it's imperative I keep my sanity a la writing, my personal therapy and savior.

I've been struggling this month with my writing. There's the whole issue of why I'm doing it. Well, I can honestly say I just have to. I'm not doing it for approval. I'm not doing it for approval. I'm not doing it for approval. There, maybe three times is the charm. Just rubbing up against that grain in my raising, maybe it was because I was a girl in the 50's and 60's. I've been feeling guilty about letting myself become too dependent because of being on disability. My stamina is at the point where I don't know if I can earn the same amount as I make on SSI. I've been telling myself, do what you love- writing. But it's a luxury I can't afford while owing debts for a new A/C and flooring. I was offered this place to live with the stipulation that I pay monthly utilities, which I've done for the past two years. Then I start thinking about how it's a financial burden on the landlords, who are family members. I just feel like I won't be able to get on that ball anymore. Lately, I just get tired so easily, but when I look back over my journal practice I see why. If you ever feel like you're doing too much, just start journaling your days and look back over them, you'll totally understand why you're so stressed, tired and anxious. I think about pioneer women and maybe I'm just lazy? Again, looking back over that journaling I see that's not the case. I'm productive almost every hour of the day. It's just what am I producing? Is it earning money for my living? I really don't know what I'm trying to say here. Maybe it's the American work ethic. Maybe it's ableism. Just reading about young families activities on Facebook these days makes me inwardly exhausted. Maybe it's my age of 58 going on 59? Am I making apologies for being disabled? Excuses? Maybe writing this is a way of giving back, if anyone reads this and says, “Now I know I'm not the only one who feels this way”. Maybe it's a way to earn back my dignity?

Back when I was married with children, before my disability was diagnosed, people would tell me “you're such a strong woman”. They had plenty of clues my marriage partner was challenging to say the least. Now, two years separated, because I'm dependent, I don't measure up. That's just how I feel. I cost money and need to be giving back. That was one reason for choosing to study Human Services. I feel indebted not only to my family but to those workers paying taxes that become SSI and SNAP. So I'll try harder next week to find work I can do. So far, all I've been offered is volunteer work. (Not enough experience.) Maybe my next interview I'll ask the person who's hemming and hawing about my disability or age if they pay taxes. Then I'll say your taxes become the SSI and food stamps for me, why don't you just let me work instead? I went to college three years ago and earned an Associates in Human Services last summer. I have some accomodations I need to save physical strength. I need to experiment with 20 hours a week and I need my P/C. The other accomodation is because I can't afford a P/C transport vehicle, I'd need to use public transportation.

On another note, here are my monthly Art sharings. First, a video I came across this month that exemplifies our adaptability with this disease. Pierre posted it this month on our Living with FSHD Facebook group. He shares his work day with us. Rising in the morning, showering, swiping on deodorant and greeting his young son before work. At work, he shares morning coffee and lunch with a group, shows a meeting with his co-workers, (including a tip on standing from his desk chair) and his transportation method. He comes home from work and roughhouses with his son. He and his pretty wife go to dinner with friends up some pretty steep apartment stairs. You have to watch to see his fun process. And he's French, so he pulls all this off while looking tres chic. Good luck to Pierre and his family, and merci beaucoup!
A Day With Pierre (French with English subtitles)

http://www.wordgathering.com/ Is an online literature journal written by authors with disabilities. It's on my continuing reading list because it's extremely helpful to see how other disabled artists write poetry, essays, fiction and reviews. One example is an author took an MRI imaging diagnosis document and turned it into poetry that expressed her feelings about the process. Very creative and moving.

I love movies, so here's a list I found of movies with characters and actors with disabilities:
I'm really looking forward to seeing “Margarita with a Straw”, but it's been proving hard to find.

I've been continuing practicing writing and running into some family history. What can I share? What can I write for money? Is that even the right way to go about it? Take away the rules. That's not a rule of writing- to write for money. It's a rule of life. You have to have it.

What do I love? My family. Reading. This month I've read the authors:
Nick Flynn, “The Reenactments” – Made into a movie “Being Flynn”, on suicide, homelessness, learning to write
Natalie Goldberg, “Writing Down the Bones” – writing as a meditation practice
James Baldwin, “Going to See the Man” – being black in America in 40's and 50's
Sartre, “Nausea” (still reading) – knew how to write his unique brand of thoughts about society in a french town.
Also I'm reading Erica Jong's “Seducing the Demon” – Think I read “Fear of Flying” back in the day, but all her books are on my list now. Smart and funny.

I never get tired of hearing about how other people live. Do I do that to avoid my own or because I'm bored with my life? Never! I wish I had time to get bored.







Wednesday, March 2, 2016

Public Transportation, P/C Mobility and Me

In February, I went to CARTA offices (our city's public transportation) to get a Tel-e-ride ID. It's for a van that can give me and my powerchair, (P/C) a ride anywhere in the area for a low cost. They're sending me the book that goes with it in the mail. Traffic was just crazy, it always is now. Any time of day, it's like rush hour.

At CARTA I parked right in front and just had to cross the driveway where buses drive up and drop customers. There's a door in the side of the office, next to what looked like an air hose, laying uncoiled on the ramp. I walked around it using my walker to the door. A young man held the door for me, there was an older woman standing by the door, I thought she wanted to come out so I said “go ahead” (come on out) but she said “just go ahead”, so I did. She was waiting for someone. The woman at the main desk, with pretty purple earrings asked, “Are you here for the ID”?
Yes”.
OK, just walk down to that black chair and have a seat, someone will help you”.
So I walk about ten steps and sit down. It's in front of a white screen and a woman asks my name, looks through a paper file. I've already done the mail in application. That took about three weeks. Then their camera was inoperable for about three weeks. The lady asks for my ID. She looked at it. “Thank you.” She went to another desk and got a small red camera. She got real close up and I smiled, she took it. She moved around slowly so all this took long enough for me to look around at everything in between talking to her. She came back with my ID and said “We got a little smile”. Wished I'd said it was the muscular dystrophy that affects my face muscles so only the right half of my lips smile. The left just kinda stays neutral. I notice my eyes are really slanting down at the outside too. And even though I put what looked like a decent amount of blush on, my face looks so pale in the pic. Man I need some sun! I opted for the least explanation, and thanked her. As I stood up I asked about the disabled fare and she said, “we don't do that here”.
OK, I'll ask where. Thank you!” I walked back to the main desk. She was on the phone so I looked at bus pamphlets waiting for her to finish, but she didn't so I asked another woman sitting at another desk about the disability fare. She looked like she didn't know what I was talking about or if she should even talk to me cause she looked back at the receptionist and the receptionist said, “you'll have to get that at One Stop on Rivers Avenue.”
OK, thanks”. Something I've thought of is why can't you apply at the main Carta office? How about including it in the process of getting accepted for Tel-e-ride? I turn to go out the door but couldn't push the door hard enough with my walker to get it more than a few inches open then it closes back. It's a heavy door and no automatic door opener. I look out the glass in the door and there's the bus unloading passengers but they all go another direction. An employee goes on the bus and comes off and she and another woman see me standing at the door but didn't realize I needed it open. So I finally turned around and asked the receptionist, “ could you help me open the door” and she came around. She asked me to step back a little so she could get a good push and opened it for me. I said “thank you” and took a few steps and realized the bus was parked in front of the ramp. I asked an employee if she knew how long it would be parked there and she said “Hm”? I pointed to the ramp, she said, “as soon as I can get someone to come move it” and she went to call someone. She went on and off the bus and in and out the door and a driver came and went on and drove off. By this time my legs were so shaky from standing there and I saw the ramp and was afraid I would fall. With intense concentration and holding the rollerator handles like 100 lb weights with the brakes on, I made it. I realize it's not safe to walk like that but my other choice was going back in the door I needed help with or waiting for someone to come along and hold my arm.
I could have made an appointment to have them pick me up and bring me, but I would've had to wheel my P/C about a mile and a half to their pick up limit. I'm glad to finally have my ID though and hope to use it soon. I'm going to have to figure out this transportation thing.

My local disability independent living center, is supportive of my goal to work and have transportation. They're great counselors who understand all the hurdles disabled people go through to get out of our homes and access our community. They tell me they have a P/C carrier that would fit my vehicle but at the present time, I have an engine problem that I'm not sure of and no money in my SSI income to find out. I wonder if there are any mechanics who could diagnose it free? I hate asking. I finished my degree and need experience, but I also need my P/C.


Saturday, February 6, 2016

FSH DYSTROPHY AND WALKING MY DOG

A woman with a disability thought about the old mom and pop grocery store in front of her house. She needs to have a ramp built just to get in there to evaluate what all needs to be done or maybe someone could lift her up the back steps? Community Center? Coffee Cafe? Art workshop? She could be there when she could. A barista of sorts? Don't put the cart before the horse, she thought.

That cold February morning Claire got on her laptop feeling like a very bad girl, she hadn't written in two days. She remembered commenting on the Democratic Debate on Facebook and posting a movie review of “Timbuktu”. That counts for writing, she allowed. 

She looked down at her dog Linus, who was antsy about going out to pee. The black lab face with grey hairs in his eyebrows and grey beard under his chin. Brown eyes, so confident and unfeigned.

This is why I don't get any writing done, was her excuse. So she put on a lavender fleece bed jacket over her pajamas and zipped up her boots, rollerated over to her power chair and sat down. She hooked him up to his leash and started outside.

The next door neighbors, a man and woman, were on their back steps having a smoke. Linus walked her over to the Sago palm and sniffed around. He looked at the street in front of the house and looked hopefully at her. 
She said, “This is just to pee, we're not walking now.”
He crossed the driveway to the azalea bed and peed on the edge of it. She looked up, the stray pug was ambling around. Fearing a dogfight in her P/C, she thought, dammit, I've got to call animal control again. She pulled her dog back toward the ramp hoping he
wouldn't see the other one yet because with Linus, loud dog whining always ensued. Think a dog's been caught in a bear trap. Her dog stopped and looked over at the neighbors and barked once.
No, you don't bark at people in their own yard.”

The guy walked towards the pug as she turned around to start up the ramp. Midway, the woman laughed and Claire glanced quickly back over her shoulder. The pug was trotting away towards home.

She had narrowly avoided the struggle with Linus where his whole body tenses and becomes like one of those statues you see in the park, only he comes alive and starts trying to run after the other dog like his life depends on it. Sighing with relief, she hightailed it the rest of the way up the ramp and herded him in the door.






Saturday, January 30, 2016

Oeuvre- a Fraction of “oov-ruh” January Part III

https://www.youtube.com/watch?v=s0p6KbO5kaU France Joli 1979

Had a day where parenting my teen daughter, I parent myself and we went grocery shopping and I ended up shopping alone which was fine. Then had a toddler crying who I could hear from the opposite side of the store all the way till I found him w/ a guy who was standing there staring at him like...a blank. No emotion. No words. I felt sorry for the little guy cause it was like no one understood or cared about why he was crying. I mean it had been going on for a good 10-15 mins. And I just drive (my scooter) by looking at them. They were on their way to check out. What do you do?

My son gave me a wooden Easter Island face monument for Christmas that I can put my reading glasses on at night, cute.

How I get up in the morning: I lean forward putting feet on floor (my bed is high) and with Herculean effort push myself to stand upright. I put my water glass from my dresser top onto my walker seat. I walk feeling my body protesting to gravity a few steps to my bathroom. I park my rollerator to the left, and balance myself a few steps with the wall, a bathtub handle and two handbars on each side of my toilet while turning myself to sit. I have to hold handbars to sit on my toilet with a plastic risen seat. After particulars, I go through pulling myself up on bars, pull up pants that I was careful not to be standing on, flush and head out to my walker. I head out of my room some mornings with my doggie directly in front down the hall, stopped for a second in front of the thermostat wondering if I should turn it up, but it was warm enough already. Listened to the silence going by my dd's room and glad she's sleeping restfully. Go the rest of few steps to the table and sit at laptop and here I am.

So I've journaled through thoughts on what it would be like to go back to church after three years out, no thank you. If you read this and have a particular question, just put it in the comment section and I'll be as honest as I can.

On the author Patricia Highsmith- “I often had the feeling Ripley was writing it and I was merely typing.”
By age of 12 she knew she was a boy in a girls body. Do I need to bring out my inner man? That's Jung, right? The balance. Animus and Anima, yin and yang. What does man and masculine even mean? Societal or cultural training? Biological survival , cavemen with strength to do things a woman had a hard time doing and women childbearing? There's the whole thing of gender fluidity. Is it emotions or physical capabilities or both?
Reading “The Price of Salt” which has been made into the movie “Carol”. Patricia Highsmith is an intriguing author, she died in 1995. I just found out she knew James Baldwin (one of my favorite authors) and someone suggested reading “Beautiful Shadow: a Life of Patricia Highsmith. While I'm waiting to get that book, I plan on watching “The Talented Mr. Ripley” which is one of the characters she wrought out of her imagination.

Also been thinking I'm going to go over my Azar Nafisi (Reading Lolita in Tehran) notes and start reading the author's she wrote about.




Tuesday, January 26, 2016

More Mild-Mannered, Never Dull January Sorting Part 2

This month, I'd been pondering public transportation in my little village of Oakbrook. I'm looking forward to warmer weather so I can take my PC and try out some shopping. I'll be sure to blog about it when I do. No, still no pics, haven't gotten the cable yet.

Still studying through on Dorothea Brande's “Becoming a Writer”, free, online.
I've gotten more serious about daily writing times and it's been going in fits and starts. Exercising daily (except Sunday)and drinking more water. Mindfulness is what I need and long for and it's always right here/there staring me in the face but I don't always remember.
If I get distracted or ignore self-care I can feel it by the next day. I've had to cut back on FB time and get the right amount of sleep, nine hours. With the weakening muscles affected by the MD, everything takes more effort. I'm eating balanced like a pot of turkey chili that lasted all month. Spinach salad with a minneola orange inspired this little bit of prose that's wanna be haiku or poetry.

Remembering parfait clouds yesterday evening,
I was making spinach salad. My minneola orange
was a uterus and cervix.

David Bowie's passing this month had me, like most other rockers listening to our favorites. Mine was “Let's Dance” with the lyric “under the moonlight, the serious moonlight”. I copied out all the lyrics, just in case. Never know when you'll run into a musician who can play them. That would be fun.

This month I read “The Revenant” by Michael Punke, who I was surprised to find out was Deputy United States Trade Representative AND U.S. Ambassador AND Permanent Representative to the World Trade Organization (WTO) in Geneva, Switzerland. I know the movie is out and I think the scenery will be engrossing. I hope they depict the bull boats and did you know beavers are called kews. Or were. 

Here's the Disabilities Studies Reader online again. I need to be reading more of it soon.

Revelation for me this month in relating to people outside my family: Don't trust people until they've earned it and shown they are trustworthy. I've always been trusting until they show they're not trustworthy. I've had it ass-backward all these years. I have to be careful in the beginning of things because I tend to gloss over signs.

Won't blame it on the chili.

I'm glad I live on the edge of woods. Pretty deep, swampy pine woods. When I was a kid, the ground was all sand, the pines were not that tall and I don't remember swamp. Now the ground is covered in feet of pine and oak mulch. I can't walk down into it because there's a deep drop off and no path. Wouldn't it be nice to have a friend who wanted to make me a path for the PC? “Oh, by the way dear, I saw you looking at the woods longingly and I know you used to enjoy time there as a child, so I'm making you a path, then you can wheel there anytime you want." Swoon.



Friday, January 22, 2016

SORTING IT ALL OUT (still) Part I

Ring, ring, cellphone … “Is this Ms. Scott?” This time from my local tourist company that offers historical Trolley rides.
Me: Are your trolley's wheelchair accessible?
Her: There are a couple of steps up into the trolley.[Insert drum roll and cymbal.]
Later, the same week:
Hello, is this Ms. Scott?”
Yes, oh Hi Ms. Jones!” (Not her real name.)
After the chat about how we were both fine & good;
I'm sorry to tell you that State Agency Rehab can't help you with the power chair carrier for your vehicle because of it's age and mileage.”
I asked since it still runs fine, couldn't we install it and if I get a newer vehicle down the road I could just transfer the carrier also? She sounded adamant that it couldn't be done like that. She didn't have any further information to offer at the time but they tell me I should volunteer somewhere so I can gain more professional experience. But I made it clear I would need my chair for mobility to look for employment or a volunteer gig.

So I called our local public transportation company about taking the pic for an ID I would need for their vans for wheelchair users. Their camera was down for two weeks after the holidays and they only take pictures two days out of the week. Hopefully I can get it next week.

Maybe I should put my physical needs, like exercise and eating right before all the looking around for work? I've had to be brutally honest with myself about how much I can do physically in a day. It's a new concept to me called self-care.

I follow a Facebook site called Writing about Writing and found this lovely book:

Like how Dorothea uses the word stimulated instead of inspired. She suggests getting up 30 minutes earlier than usual and before you do anything, go straight to writing. Don't read anything or talk or even make coffee. Do it for at least 30 mins. A few chapters later she instructs: pick a good time for every day to sit down and write. It'll be your time to write every day. Don't let anything get in the way. Write for another 30 minutes and then begin to write a few more sentences , then a few more paragraphs.
In Chapter 5 she has this little ditty: Writing calls on unused muscles and involves solitude and immobility. I need to use unused muscles, have quite a bit of solitude and immobility and TaDa! Here I am.

This following site is chock-full of people in the Disability community and their projects and when I last checked are upgrading their site.

I'm an aspiring writer/artist. I've been so stimulated by 93 year old Iris Apfel in the way she used her intuition to feel out what kind of interior decoration or fashion she needed for her clients or herself.  Check out Netflix, “Iris”. 

Some other books and movies that taught while entertaining me lately are: Helene Hanff, “Q's Legacy”. You know, well maybe you don't, the author of “84 Charing Cross Road”? Of course you do! Well, you should.

The Never-Ending Story” a film with the following timely dialogue between the boy hero and a vicious stalking wolf:
Brave warrior, then fight the nothing.

But I can't! I can't get beyond the boundaries of Fantasia!

Fantasia has no boundaries.

That's not true, you're lying!

Foolish boy, don't you know anything about Fantasia?
It's the world of human fantasy. Every part, every creature of it is a piece of the dreams and hopes of mankind. Therefore, it has no boundaries.

But why is Fantasia dying then?

Because people have begun to lose their hopes and forget their dreams. So the nothing grows stronger.

What is the nothing?

It's an emptiness that's left, it's a kind of despair destroying this world”
************************************************************
I wasn't expecting it, but had some despairing non-fiction drama myself this past month. Our relationship flew apart. Demolition. Kaboom. It's a process that may heal with time, but for now there's no contact. I'm sharing this because I'm blogging about my life. I'm flying by the seat of my pants both in wondering if and how the relationship can be healed and how to write about it. I write about it in some of my private morning musings. It helps to sort out confusion and trace sources of bitterness.

This was another early morning exercise. How someone might see me coming out my door;
Someone looking at me would see I'm dependent on the rollerator and I look like I'm focused on my movements, I'm a slightly heavy older woman. With short light brown hair going silver. I'm light skinned, today I'm wearing dark tan pants, a blue Scandinavian patterned sweater, and a black felt jacket. People see me lumber down the long wooden ramp with my left hand on the handrail and perch at the end . They don't see internal teetering for balance. They might gather that I'm weak or invalid. I'm weak for what I used to be, but not invalid. Then I'd be lying in bed. I hate the word invalid. In-valid.
Someone might gather about my character and background that I'm determined to go somewhere, that it must take a lot of energy to walk. I may make them glad they can walk freely. I can be seen doing this daily most of the time, sometimes 2 times a day. They may think I'm a quiet person or stuck up because I concentrate so hard to balance I can't raise my hand to wave or look up to say hello. I have to watch where my feet are going. They may feel sorry for me or nothing at all. I'm pretty ordinary looking. I'm coming out of a dowdy period. If they were close enough, they'd see I have an orange multi-strand necklace on with hammered silver rings, earrings and orange fingernails. Also a bright blue and red fleece scarf wrapped around my neck for the cold. They might see the old store beside my car and think I had something to do with that at one time. (I did) They may think something about the old trailer that's had some new remodeling. They may think I must be pretty poor to be living here. I'm not financially independent, but emotionally I am better than I used to be.