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? 

 

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 

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 

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