Monday, November 25, 2013

Fine

I'm the only white person in the emergency room
I can't believe I'm here
I don't want to be here
I don't get sick
I am fine
I'm the queen of denial
I drove myself here
I'm all alone
Always all alone
Pain is not worth it
Reminder of what I don't have
The intake nurse is friends with my parents
She wonders why on earth I would drive myself here
My father is fixing a sink
My mother. Is my mother
She is across the street visiting my grandmother
I am here
All alone
Me
Alone
Diseased
Once again
Never free from the shackles
Of illness
I need to stop watching back to back episodes of Grey's anatomy
It's making me self diagnose
It's only a virus
I need an iv
That is all
No malfunction
No recurrence
I am fine
Fine

Thursday, November 21, 2013

Good-Bye Again

D. 
I write this with a heavy heart. I try to be a kind person and contrary to what some might say, I don't like hurting people. I try to be gentle and cautious with other people's feelings and hearts. So telling you this is not easy. I don't mean to cause you more harm. And it hurts me that I have to do this. But at this point I don't feel there's any better option.
I can't watch you ruin your life. I can't be a part of your life. You have continued to make poor decisions and for some reason they affect me. When I ended things the first time, I did it in a vindictive and nasty way. I was angry then. I hated you. I felt you ruined my life. I was over-dramatic. And I spent so much time willing you not to exist. Erasing the past. Pretending it never happened. It was the right thing to end it. I did it in the only way I knew how. But it was wrong how I did it. I couldn't be sensitive then. 
And then a few years ago I decided the only way I could actually forgive you and move on was to talk to you. To bring up the past. Hear your take. Analyze things to death. And to forgive you. I forgave you. I forgive you. But I have never forgiven myself. Talking about those days takes me back. It won't let me move. It makes it hard for me to function. It's an unnecessary distraction.
I fight every day to be happy. To be healthy. And talking to you is not helping my goal. It's pushing me back. Causing me harm. I'm truly sorry for what you are going through. And while I know I could probably help you and be there for you. You have never been able to be there for me. And now I have to choose me, once again. I have to say good bye. This time I say it in a soft and gentle way. I say it with concern and care. For both of us. But I can't sink. I must choose to swim. Even if that means I'm causing you to drown without me.
Good bye,
R

Monday, November 18, 2013

Once a Cheater...

I just don't understand why a person would do that. Is there ever an excuse?

Abuse. Neglect. Escape. Need.

Truthfully you're selfish. All you can think about is yourself. You obviously don't care about anyone else but yourself. You don't care about the consequences. You don't care how it affects those around you. You are playing with fire. And while you are definitely burning yourself, you are also burning those around you. Your husband will leave you. He will not forgive you. He will take your child. He will remarry. Your child will have another mother. Your child will be burned. Damaged for life. Your parents will choose his side. What you're doing is unforgivable.

And you can't see it. Any if it. All you care about is yourself. Your pleasure. You. You're selfish and narcissistic. Self-absorbed. You can't stop.

I think there is still hope. You can still save yourself. But you must get out. Now. You must stop. Now. Cold turkey. You must get help. Now. There's no other choice. It cannot wait. He might still be able to forgive you. Or at least try to work through things. But you must choose him. You must choose your family. Stop choosing yourself. Stop choosing your pleasure.

You have a disease. You are unwell. You need help.

I hope you make the right choice. Because truthfully, if someone did this to me. I would never be able to forgive. I would not stay. No tolerance. Unacceptable. Trust would be gone, forever. You are a cheater. You will always be a cheater.

Thursday, November 14, 2013

Lack of Color

I think I am getting angry all over again. I say I have moved on. I have mourned. Been through the five stages of grieving. That's false. There are way more stages. Try a million. Sadness. Anger. Hatred. Obsession. Neurosis. Psychosis. Happiness. Morbidity. Disgust. Perversion. Maybe a million and one. But I won't name them all.

I'm not sure what sparked me to think about all this today. Why I can't get this out of my head. Why today. There's no date significance. I didn't have a sighting. Perhaps it's because I read an article about a 35 year old virgin. Or an article that a newly divorced guy just wrote about how to be a good husband. But in any case. It's on mind so here goes.

How dare you?
How dare you.

I gave you everything. Everything. I lost all of me. In you. I gave up my whole being for you. To make you happy. To satisfy you. I dedicated my life to you.

You. You in your pressed shirt. Dry cleaned pants. Neat and trimmed chin strap beard. Always so put together. Go ahead, shine your shoes. Take out that polish from the top of your closet. Shine your damn shoes.

Me. Me in my random colors. Me in my free spirit. My love for people. My need for randomness and excitement.

It wasn't me that changed. I have always been the same. You were the one that changed. Or maybe we saw each other's true colors. You in your lack of color. Me in my abundance of color. You wanted me to be drained of all color. And I wanted you to add color. The mixture clashed. It always ended up in a mud brown tone. Hideous. Painful. Horrifying. Disastrous.

You might ask why I still wonder why you gave it all up. Why you walked out on me. Why I cannot move. Forgive. Because. I don't walk away. I don't give up. I am worth fighting for. I am not to be given away. Discarded. I am loyal. I am a friend. I can be counted on. I am worth loving.

So go about your life. As if I never existed. Go about your day to day routine. And just remember that those bright colored, pressed shirts you wear were bought by me. I was the color in your dreary life. You can never erase me. Blot me out. I will always be a part of your color block. One bright, shiny color in your past.

guest post - Cymbaline

So when Freedom asked (begged) me to write something for the blog, many thoughts went through my head. I was flattered/moved/touched.....Ok that's a lie, just one really.  How can i write something which is "in line" with her own hauntingly sad work?
 
The only way to make that happen, of course, would be to get inside her head.  So i took a deep breath, and a plunge, and in I went.....
 
Jesus Christ it's dark in here?  How does she see anything among all this bloody darkness?
 
Ok here I am, in the belly of the beast - in a world where magical words come out, and magical artworks.  Painful words, yes.  Sadness, sure.  But beauty too,  Am I up to the task?  Let's see:
 
Pain - By Cymbaline, Pretending to be freedom
 
Pain
It hurts
So bad
 
 
Everywhere
a sea
of pain
Ouch
 
Band aids
don't work
for this shit.
 
 
But it isn't all sad poems.  There are tales of pain as well.
 
Here's mine:
 
I see him, walking down the street.  he looks so freaking happy.  how can he look so happy after what he's done to me?  Walking there, with his freaking caramel latte, yet  trim as a baseball field's lawn.  Perfectly groomed.  How dare he?
 
So careless, like i wasn't even there.  Taking whatever he wants, not worrying about the consequences.  The destruction left in his wake.  Like a tornado.
 
A look back?  Don't make me laugh.  I am already forgotten to him.  Just a minuscule blip on his radar.  A flash and then gone.  I am nothing to him, who did so much damage to me.
 
Drink your latte asshole.  Don't choke on it.  I am a permanent stain on your karma.  You will never recover...
 
Never recover from what you did to me....
 
Man who took my parking spot.
 
*******Freedom here (aka Robyn aka a million other names....)
 
Dear Cymbaline (aka whatever your name is)-
 
Can I just say this post is brilliant! Oh and I did not beg. I was really asking for motivation and a boost to write my own piece. The one that is itching to be written. The one that is stuck in my head but refuses to be typed.
 
Dark. Haunting. Those are intense words. But I guess I'm an intense person. Maybe you are just jealous.
 
No, in all seriousness. You got me. You pinned me in a nutshell. Tied me in a little bow.
 
The guy you were talking about seemed oddly familiar. Now I can write about him and tear him to shreds.
 
Thank you. R
 
 

Tuesday, November 12, 2013

Loving that Lumbar Puncture

I am blown away. As per the recommendation (or insistence) of my general practitioner, I have called a new neurologist. Of course the number I was given wouldn't take me to an actual person so I decided to go on the hospital's website and find the correct number. The doctor appears to be very knowledgeable in all forms of neurological disorders. There on the list of his special interest were IIH (Idiopathic Intracranial Hypertension) and Pseudo Tumor. Both terms I have become well acquainted with over the last four years.

At the bottom of the page is a link for an article written by an older woman about her experience with hydrocephalus and her life up until receiving her shunt. I don't know why but I am literally shaking after reading her article. Yes, her diagnosis is slightly different than mine and yes, she received the other (more dangerous) shunt operation. But her experience, the emotion in her story rings so true. It is the same story of how important patient advocacy is and what it feels like when no one takes your symptoms seriously. It is a battle of going to doctor after doctor, each telling you there's nothing wrong. Barely being able to sit up, wearing sun-glasses because the light hurts your eyes and puking into a bucket when you haven't been able to eat in days. Yeah there's nothing wrong. The Cat Scans, the iv's, the Percocet. Not helping. Making things worse. When all you want is to be dead so the pain will stop. A miserable existence.

And then one day, you get this amazing test called a Spinal Tap or Lumbar Puncture. The doctor pushes into your lower back, trying to locate the right bone do shove the needle in. And then, after some misses (quite the painful experience), he finds the right spot in between the two vertebrae and second later, spinal fluid starts pouring out. There is so much fluid that he calls the nurse over to bring more vials to catch all the fluid. And then it hits you. Relief. You can tolerate existing. It is a moment of clarity. Of sheer happiness. No pain. No vomiting. Serenity. And then minutes after he's done, the pressure returns. Tolerance is instantly gone. Suffocation returns. The death wish arrives. Then, you get sent to get the Tap done laparoscopically. You get rolled into the room and you feel barely-conscious. After a few minutes of this extremely large needle positioned in your back, you become animated. You notice the nurse's crocks, comment about a house refinance another nurse is talking about, crack some jokes and get everyone rolling. Thirty minutes of pain-free relief.

I'm not sure why I am reliving that specific moment. But I don't think anyone can understand such relief. You know you have a problem when you crave a spinal tap. Any time I have spoken to med students or doctors and shared my love for LPs, they always look at me incredulously. It's so worth the pain of going through the procedure. It's worth the leg tremors, the zapping throughout your whole body. It's worth the possible paralysis. Anything for the momentary relief.

Fast forward three years and you are once again on the gurney, being wheeled into the emergency room. Symptoms are back. Different state. Different hospital. Limited support system. But it's back. The vomiting. The vision loss. And this time you know. You tell the doctor that all you need is an LP and all will be well. You are craving the release, as if it were a chocolate bar. And this time, you make your own decisions. It is your life, your choice. You refuse to be put back on the meds. Refuse the side effects. You choose a quality of life, no matter what the (literal) cost. You choose the surgery. You are your own advocate this time. No one can talk you out of what you want. What you need.

A shunt was the best decision that I ever made. Yes, it was my choice. And while I'll probably pay the price for the rest of my life, at least I have a life. I'm am free. Pain free. I am functioning. The fluid in my brain no longer controls me. It is being managed. And no one makes decisions for me. No one tell me how to life my life. So now, I wait for the office to call me back. And I will go in to see the neurologist. This time, I have knowledge on my side. I have my story in my pocket. I will walk in with my own two feet, by myself. There will be no gurney. No wheelchair. No bucket to throw up in. No sunglasses. Just me. Me and my shunt.

Take that! 1 in 100,000!


http://www.hydroassoc.org/ha-updates/looking-back-moving-forward-six-years-after-my-shunt-was-installed/

Saturday, November 9, 2013

"Where are your clothes?"

I always compared this city to a used condom with a hole. It's like this. Everyone passes around the same condom and keeps trying to reuse it. But it's no good. It's barely there. No one seems to notice. And then they swap partners. Lets all share. One big happy family. It's sick. It's revolting. How many people can look around the room and say they've been with more people then they can count. And it's all the same people. It's almost incestuous. This guy dated the girl and now he's married to someone else and she's engaged. But lets all be friends. One big happy family.

I go to this party. It's downtown in a "classy" bar. I know I'm going to be miserable so I put a brave face on. I know I'll be way overdressed. Of course I get lost. And then parking is a nightmare. I haven't been out on a Saturday night in I'm not sure how long. A long time. I don't own any partying clothes. Don't remember what dressing sexy looks like. I'm plain Jane.

I get there and I'm the only one who remembered to put on any clothes. I know I used to wear very little when I frequented the bar scene. But I always wore a coat. These girls are practically naked. Downing drink after drink. Non kosher food actually smells heavenly. I'm reminded of a time not so long ago where I would have totally fit in, totally ordered some odd delicacy. Gotten tipsy with the best of them. But not tonight. Not in this life time. I see the religious folk start trickling in and I realize the time has come. Time to exit the scene. I kiss the birthday girl goodnight, share pleasantries with the required and gladly escape.

I make it home in record time. And for once, I'm not bitter I'm alone. Theirs is not a lifestyle I envy. I take off the smoke stained clothing. The shower is turned extra hot. Scrub out the unnecessary hair spray. Wash off that second coating of mascara. And I am clean. I am free. I am content in my choices. Happy with my lifestyle. I know this is right. Glad to have had a glimpse at a life that could have been mine. But I realize that it's not a life. It's all a facade. Doing the right thing is what I want. This IS who I want to be.

Thursday, November 7, 2013

Spectrum of Sexuality

Sexuality
Body image
Orientation
Maturity

Association
Acceptance
Religion

Stereotype
Conformity
Settle
Impact

Affect
Effect

Move
Feel
Abandon
Neglect

Deserve
Surround
Suffocate

Silent
Dormant
Dissociate

Intense
Avoidance
Regret

Friday, November 1, 2013

Drowning in Paint

I have so much to say and yet I have trouble sitting down and writing it all down. My thoughts seem to be clearest in the shower. I guess the steaming hot water has an effect. That and probably the fact that there are no distractions. It's just me. Me and my thoughts.

A lot is going on, even though on the outside it seems like nothing has changed. But in my head, everything is always changing. Or maybe it always has. Unsure. My mind is always swirling. (is that a word?)

Here goes:

I am NOT motivated. I can't bring myself to make a move. I do want to move forward. I AM sick of living in the past. But it seems to follow me. Haunt me. I thought I had overcome it all, but it follows me. I can't escape. Whether it's a stupid song, driving by a certain location or walking a certain path. It follows me. I am still captive. I see what other people have and I know nothing is as it seems, nothing is perfect. But I want that too. I want imperfect. I want something. I deserve to live my own life. A life. Why can't I do anything to actually get me on the path to my future. Why am I stuck. What is blocking me.

Last night, I came home to a piece of paper near my painting supplies. This paper had a list of local shadchanim. Definitely my dad's doing. And then something strange happened. While I was sitting on the floor painting, headphones on, my dad started calling the list. And I could sort of hear what he was saying. I was happy. I knew I would never call them. I was happy. Finally someone else was making decisions for me. Someone cared. Someone was making an effort. I felt loved. I mattered. It was a crazy feeling. So he is doing all the leg work. And I realized something. It's not new, but it hit me again. I just want someone to care. I want him to care. I have always wanted him to care. I can't do this on my own. That's untrue. I can do this on my own. But I don't want to. I want someone to hold my hand. I need him to hold my hand.

And the truth is that I'm scared. I'm petrified to get married again. For so many reasons. My biggest fear is of getting divorced again. I honestly don't think I could survive another divorce. And everyone has heard my joke: "one of us will leave in a body bag before I get divorced again". Yeah, it's a funny joke. But I don't joke. I am being totally serious. I can't commit to someone with that huge fear. Who says I will make smarter decisions the second time. Maybe I'll be so desperate that I will ignore the red flags. Maybe. Maybe a million things.

I'm scared of trusting someone. I'm scared of letting go. Even though, that's really all I want to do. To let go. I'm scared of change. I'm finally comfortable. Settled. I finally like being around myself. I like sleeping in my own bed. I'm finally sleeping. But I know there is so much more to life. I know I have so much to offer. I CAN be a great wife and an even better mother. That is my destiny. That is my dream.

And yet I sit every night, and I drown myself in paint. I surround myself by a non-threatening environment. Surroundings that I control. It's a self contained plan. And I'm finally excited. I have an idea. I come up with a method. I buy the right colors, even splurge on fancy paint brushes. All different textures and styles. It's exciting, it's invigorating. I make a rough draft, I draw it on the canvas. And every night, I put on my headphones and I paint. It's my little world that no one can enter. I love it. I love the process.

The pathetic part is that I almost always hate the painting at the end. I spend months on it. From idea, to plan and then to action. I love the process. And then I hate the end result. I hate it with all my being. It could be this beautiful masterpiece. But I hate it. I hate it because it left me. It abandoned me. It's over. That part of me is over. Over. So now I am in the middle of this huge project. And I reached the point of hate. I'm almost done. It's almost ready. And I am honestly sad. I don't want it to be done.

This painting represents something deeper. I designed this painting to take up an entire wall. I imagined this painting on a living room wall, behind a couch. Or maybe in a dining room, behind candlesticks. Do you know where this painting is going when it's finished. It's going under my bed. Under my rickety, springy bed. It's going to be hidden. There is no wall. It's not my wall. Not my home. This painting will only be hung up in MY home. It's part of my dream for my future. For the life I want. The life I deserve.

And so the headphones go on. The paint brushes come out. A brand new canvas. A new process.