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.
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