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.