Joyce Carol Vincent: How could this young woman lie dead and undiscovered for almost three years?
A Chiari in New York
Tuesday, February 18, 2014
Dreams of a Life
Definitely need to see this documentary. Even today, with all of our
social networks, people can still go lost.
Joyce Carol Vincent: How could this young woman lie dead and undiscovered for almost three years?
Joyce Carol Vincent: How could this young woman lie dead and undiscovered for almost three years?
Monday, February 17, 2014
Curse you black ice!
Curse you black ice! Wasn’t long after my Valentine’s arrival in
Boston, and next thing I know is I’m head over heels. Well, the man I love was
with me, but love had nothing to do with it. Slammed flat out on the asphalt. My
cane even flew from my hand. Jeff did his best. Wanted to take me to the ER,
but I was not about to be lost in the system or become a “teaching experience”
for a student. What a painful weekend. The worst was traveling back to NY on a
packed train. Physically it was excruciating. Emotionally…I have never felt
more alone. My spine and head were filled with searing pain. Had to keep quiet
and try to contain the contortions. The ride was so sad because I knew there
would be no one to meet me on the other end. There’s no support system here. No
one to wait for me to arrive home and greet me with open arms. No one to tell
me it’s going to be ok…. this just absolutely sucks.
As a child, I spent so much time alone or to the side. My dear sister
had childhood leukemia. One vivid memory is sitting in the hospital waiting
area, not far from the gift shop, where my parents would buy me a poster to
color to keep me busy. It was the 70s, and I can still see the vivid markers
that came in the pack, the raised “black velvet”, and the “fill in the white
patches” on the glow in the dark unicorn and butterflies. At times I’d be there
in the waiting area, all on my own. I could go to a place in my mind that shut
everything out and not even notice the time. Now where did that gift go?
#chiari #invisibleillness
#chiari #invisibleillness
Thursday, February 13, 2014
Maggie Estep
RIP Ms. Estep... you will be missed
http://www.nytimes.com/2014/02/13/arts/television/maggie-estep-slam-poetry-performer-dies-at-50.html
Why Put Off Surgery?
Why Put Off Surgery?
I could give so many reasons:
There’s just so much to do at work
President’s Day is coming up
Have tickets to these upcoming plays
The L train is down
My cat’s birthday is coming up
Honestly, I’m scared. I’m past scared, I’m petrified. My surgery won’t
be just one, there’s at least two and they’re done over 2 days. The first is
the one I have read the most about, which is the decompression for the chiari
malformation. A part of my skull will be permanently removed to give my brain
more room.
***Oh Lord, I just googled to get more detailed info to post and there
is a youtube video of the procedure. Nope, won’t be clicking on that link.
Yes, I have too much brain. Yep, I have a fat head. Decompression
surgery is supposed to give relief from the brain pressure, and allow for the
CSF flow to get back to normal. There’s going to be some shaving involved. Say
goodbye to the hair. Then there’s going to be staples…lots of staples in the back
of my head.
I’m scared.
Second surgery is for the dorsally
angulated odontoid process, and will be performed either hours or the next day
later. The surgeon with go in through my nose with tiny drills to chisel out
part of my C2 (the bone that my brain is impaling itself on). One doctor had
previously informed me that I would be in traction for a week before the
surgery and then they would go in though the back of my mouth. Traction!!!!
Cutting my mouth open? Aaaaaaaaaaaaaa! Um, no thanks, I’ll take the drills.
Post drilling, they’ll take some bone from my hip, attach it in the vertebrae,
and rods and pins put in place. My neck will never swivel from side to side
again.
I’m even more scared.
So here’s the smack in the face with a cold fish. Reality, my friend…
my enemy. These surgeries will only hopefully stop the progression, and there
is a very good chance I will never regain what I have already lost. There’s
also a chance I will need more in the future. My surgeon has been very frank
with me and says anything we get back will be a bonus. As much as I am all for
hope, I’m actually glad he didn’t sugar coat it. I’ve also seen a lot of posts
about decompression surgeries that needed to be repeated, botched ones,
symptoms returning and not knowing why, etc. Some people need only a few
additional, others need 20+; and then others I’ve read die from complications
and other reasons unknown. I know, I know…step away from the computer.
There’s going to be recovery time in a rehab facility. I’m going to be
on my back for a while and need someone to help take care of me. There will be
a lot of NCIS marathons.
Needless to say, I will put this off till I’m dragging my legs behind
me. It could be months, a year, or it could be years if I’m truly lucky. Oh, if
they could only find a cure before I get to this point. Please everyone
understand, SURGERY IS NOT A CURE.
Still
scared. Someone please make me laugh. I need it today.
#chiari #invisibleillness
#chiari #invisibleillness
Wednesday, February 5, 2014
Just a Day in the City
Heard on the subway: “Even when I was a vegetarian, I ate escargots.
They’re just bugs you know…”
Je suis seule…
Just have to love the French. They even make the most simple, saddest
statement sound beautiful. (So sue me, I’m a cheeseball on the level of Margo
Martindale’s “Carol” from “Paris, je t’aime”.) New York can be that beautiful
sort of romantic lonely (you know that grey rainy, tea kettle whistling in the
background while wistfully looking out the window sort of heart-string lonely).
Today, this is a different sort of lonely. Having a chiari in New York can make
the lonely go down a devastating route.
Damn, I have never felt more alone.
I’m fighting this war against my body in the city, on my own. My folks
live back south and my boyfriend (at my age, feels so weird using that word,
but can’t come up for a better term for him after all these years) lives in Boston
due to a job that was truly too good to pass up. The problem is my docs don’t
want me living alone. The idea of giving up that independence is something I’m
just not ready for yet. Look, don’t think I’m writing this to say people aren’t
there for me enough. My parents and boyfriend, do everything they can for me,
and I am forever indebted to them for their support, love, and all they do. I
also have one incredibly dear friend. He’s a little brother sort, who has keys
to my place and checks in to make sure I’m alive and not in one of those stupid
situations of, “Help, I’ve fallen and I can’t get up!” It’s just (I know, step
away from the computer) I read on Facebook and other blogs about people with
illnesses and disabilities (who live outside of NY), and their amazing support
systems of family and friends, and wonder how having a huge network like that
would feel. I used to have friends, or I thought they were friends. Now they’re
just Facebook icons posting pics of their food, kids, and such. Yes, FB is a
plague in our time, making everyone go through simulated connections and
destroying true communication, but this whole annoying chiari business can
cause even more friends to peel off in grand numbers since you can’t go out
much any more.
Here’s a little of how the lonely creeps in.
As mentioned before, balance is a massive issue with my chiari, so
daily tasks can be quite a challenge. Day begins, get up and if it’s a good day
there’s no wobbliness. Then there’s the case of the bad day and you swing the
legs over, attempt to go upright, sway, nosedive forward and bean yourself on
the head on a chair arm. I even managed to knock myself out once. Imagine
explaining the purple and green egg on my head at work. Ugh. Showering can be
quite an adventure also. Damn it! I am not ready for a senior bar in the shower
or shower chair! Unfortunately there are days I could really use one. You got
it, I’ve fallen in the shower and even clean out of the shower onto the floor,
then there’s also the case of hitting the towel rack. Sigh.
Jumping ahead to the commute Well, it’s NY so it’s going to be by
subway, and we all know how that is from a previous d post.
Now, as for work, I’m pretty fortunate. Am at least behind a computer
(even though that’s not the best thing for ACM), and don’t have to be wobbling
around constantly. Sitting though can be torturous. Lean one way, brain slides…lean another way, bone protrudes
more…find the perfect sitting position, someone f@cks with my chair. Yes
Dorothy, we are still in high school. Even though there is a “DO NOT SIT IN THIS
CHAIR” sign on it, people readjust the chair that work got for my spine and had
also set it up especially for my size. Every little thing like this chair can
help me make it through the day with maybe just a little bit less pain. I used
to love my job and worked extra hours on projects that really made me feel
fulfilled. I even ran an art blog, partnered in a successful gallery, and was
out to all hours promoting my artists and seeing friends. Now, I just do good
to make it through the day and hope that no one thinks I’m weak. People
understand exhaustion for people with cancer and chemo, or the flu, or a broken
leg; but when they can’t see my screwed up inner workings, they can’t
understand why I’m about to collapse. I feel like vulture sh*t.
Time to head home. Can’t feel my hands and feet. Head has a spike
piercing through the back of the top of the skull. Eyesight is quivering and
fading. No, there’s no going out for post work drinks, dinner in Chelsea,
spending time with friends. Rattle around the subway again. Home. Click on the
lights. No one’s waiting for me with arms outstretched ready to hug me. No voice messages. Too much pain and numbness
to cook. Uncork a bottle of wine and become one of those couch potatoes I swore
I would never become.
Damn, I am so alone.
Not every… but on random nights, I’ll hear the lock turn. “Hellooooo,
you around? What’s happening?” My friend that checks in sometimes pops his
smiling face around the doorframe. “You eat yet? You need to dump your
boyfriend and date a sandwich. C’mon lets get some food.” A little later “Ping”! Skype jingles, and I
know it’s Boston calling. My world may be smaller, but maybe I’m not always so
damn alone. Now I know who really
matters, and truly know who all those people I used to call “friends” really
are.
Note this
entry was written in advance and after putting the first blog post up, (And
yes, I posted it on Facebook. Was the only way anyone would ever see it.) I
have started hearing from some people again. Honestly, I can’t even find a way
to express how much it meant to me. Maybe FB isn’t the plague. Would just so
love to see more people face to face, and have real intelligent extended conversations.
Friends have always meant so much to me, and so many of them I have always
considered my family. Miss cooking for you. Miss listening to your tales. Miss
you all.
#chiari #invisibleillness
#chiari #invisibleillness
Thursday, January 30, 2014
Jonathan Berger
I just found out about the composer/researcher Jonathan Berger via https://www.facebook.com/NeuroscienceResearchTechniques
and so wished I had heard of him earlier. Just missed seeing his recent piece "The War Reporter", which ran from Jan. 11-13th at Roulette in NY. There's also a really good review of his work at: http://www.the-scientist.com/?articles.view/articleNo/38885/title/Review--Auditory-Hallucinations--Composed/
And here's his website: http://www.jonathanberger.net/
The War Reporter from eye-lasher on Vimeo.
#art #theater #jonathanberger
and so wished I had heard of him earlier. Just missed seeing his recent piece "The War Reporter", which ran from Jan. 11-13th at Roulette in NY. There's also a really good review of his work at: http://www.the-scientist.com/?articles.view/articleNo/38885/title/Review--Auditory-Hallucinations--Composed/
And here's his website: http://www.jonathanberger.net/
The War Reporter from eye-lasher on Vimeo.
#art #theater #jonathanberger
Monday, January 27, 2014
Lame and late
I know. I’m lame and late on posting. After being informed my writings
are deemed negative, I lost a bit of confidence. Believe me, having these
malformations, abnormalities, etc. make a person unsure enough. Hmm…negative? I
know I like dark humor and dearly love to laugh at myself (it’s a self
preservation technique I’ve used all my life). Well, hearing all that from people
I love and respect made me reread and over think everything I was working on and
had yet to post. After taking a break to sort this out, I’m back. Can’t
guarantee I’ll be a bluebird of happiness. All I can do is write what I see and feel, and post when it feels
right.
#chiari #invisibleillness
#chiari #invisibleillness
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