Five Minutes

Have not been able to write in a long time. It has been many challenging months. Seems to be very difficult to get a break. 

Eight surgeries since March and my body is just not responding well anymore. I have just been discharged from the hospital on Tuesday after twelve days and two painful surgeries. 

This is not how I planned on entering another year. I was hoping to move forward. Finish school. Make something of myself. 

And instead, the hospitalizations are getting closer and closer. Constant visits to the emergency room. Spending more time with the neurosurgery residents than my actual friends. One rolling vein after another. My body can't do it anymore. My mind cannot calm down. 

All I want is to heal. To feel alert and alive. Be independent. Make my own choices. Be in control of my own body. To feel comfortable in any position. Be rid of this constant chronic pain. No more painkillers. To sleep. 

No more. I have had enough. It's gotten to a point where I cry for my mother. Who have I become. This slobbering, pathetic person. Can't get my act together. 

I whisper to myself throughout the day. Just get through the next five minutes. 

My mind is constantly running. Mostly at night. When sleep should take over. Instead, the pain and the thoughts take over. Reminding me of how awful life is. Of all the pain. The things I cannot do. 

I lay there for hours at a time dozing in and out of delirium. Imagining the worst. Dreaming and creating holocaust-like stories in my mind. Reliving memories that never happened. With people who are not here. Are not in my life. Or cannot even talk. 

I think of my mother. A lot. And I cry for the parents I wish I had. The home I wish I could go to. A cocoon where I can feel safe. Loved. Taken care of.  

I cry for my future. A future that felt so close. At the tips of my fingers. Slowly slipping away. I cry for my independence. I can't even take a shower on my own. My head is partially shaved. I am not myself. I cry for no reason at all. Being overwhelmed and exhausted should be enough of a reason. 

That's all for now. I need to lay down. 

I can make it through the next five minutes. 

That's all that matters right now. 

Five minutes. 

What Are You Waiting For

Don't ask me for an update. If you really cared, you would just show up. I know that you have your own life. Wrapped up in your own world.

So far away. Four whole hours.

But seriously.

It is really hard for me to be understanding. Stay open-minded and positive. Your occasional message checking in. What are you waiting for.

A funeral.

Because it will happen one day. And then what. What will you feel then. Will you regret. All those times you did not bother to come. Those precious moments that you missed.

You can still catch that brief smile of recognition. It's not too late. But the clock is ticking. Decline is happening. And you are not here.

What are you waiting for.

Waiting for that phone call.

The phone call that will change all of our lives. Alter reality as we know it. And then you will show up. And be sad.

Mourning.

For this tremendous loss you feel. But never actually took advantage of the time that you did have. And did not bother to come and make a difference. You left it up to others.

Us.

Always our responsibility. Burden. Pain. Privilege. To care for. And hold. To feed. And cheer up. A lifetime revolved around. Affected.

In the end. We will have very little regret. Will feel pride and comfort. That we did all we could.

Almost.

That we were there.

And you will come and it will be too late. You will drop everything and finally show up. And it will not matter anymore. Because you missed out. Your loss.

And while it will be a loss for us. We will be consoled that our faces were recognized. Hands squeezed. Occasional name uttered.

We were always there.

Polar

Polar opposites

Two sides of a coin

Day and night

Sun and moon

One young and the other old

The young one is quiet. Often introspective. Thoughts flood her mind at all times. She is mostly sad. Stuck in a past life. Forever reliving memories. She is 6 years old. Wants to be held. To be heard. To be listened to. She is artistic. Creative. A loyal friend. Would drop anything to be there for you.  

The old one is loud. A leader. A bitch. Take charge kind of gal. She has a hard shell. Built a fortress around her heart. No one would dare enter. Giving up is not option. She shows up. No matter what. Fights to lead a functional life. No one can think she is weak. She is 80. Propelled into adulthood. Forced to be mature. Make life decisions. She is a fighter. She will leave before you hurt her.

One is mean to the other

Telling her to snap out of it

Not to fall into the trap

Of life

Of love

The other is sad

She is tired

Begging the other to make things ok

To hold her hand

Waiting for a pain free moment

They are polar

But perhaps one day they could meet

Join forces

Unite

And form an alliance

You Don't Know Me

You think you know me but you don't.

Outside
I am a doer
A fighter
A leader
I am motivated
And loyal
I will be there for you
Generous
Kind
Loving

Inside
I am weak
A patient
I am in pain
I am scared
Lonely
I am a failure
Sad
Static
Immobile

I have officially been told that I have a medication overuse headache. So add that to my three other kinds of headaches and we could have a party. Oh wait, it seems my head is already having a party and I wasn't invited. So not only do I have bronchitis. But I also have to stop taking all meds for 5 weeks. Gotta ween myself off my addiction to pain meds. All the while suffering from a terrible withdrawal headache, attached to my migraine and occipital neuralgia. Not to mention my IIH. Which thanks to Hopkins, we have no idea what is going on. I just get to fall apart. And suffer in constant agony. And all the while, I have to function. Go about my regular life. Pretend like there isn't a war zone in my skull. That I don't feel like I'm being attacked by shooting fire. That I won't combust at any minute. From sheer pain. I have to go about my day like nothing is wrong and I am totally fine. Work. School. Volunteering. No biggie. When the truth is. Most days I want to curl up and shut down.

How could Hopkins dare tell me that come January, I will have to find a local neurologist to manage my care. And in the next sentence say my case is quite complicated. How could you dump me and expect me to manage. No one wants to deal with me. Have I become that patient. Have I become a nuisance. Life fading out of my eyes. Suffocating under the weight of my pain. Of my diseases. How can you tell me six months ago that you will admit me for testing and then not follow up. Tell me that there are no beds. No neurosurgeons on staff. That you are understaffed. And receiving over 300 calls a day. Aren't you the top hospital in the world. Innovative in your field. You say now that you will schedule me for DHA and ICP monitoring. Find out what is causing my chronic pain. But I don't believe you. You only seem to care when people are dying. Is that what you are waiting for. For me to completely fall apart. Puking my guts out. Unable to go to work. To school. Confined to my bed. My couch. You need me to get to the point before you will help me.

But do I even want to be admitted for testing. Shave my head. All to find out there's nothing wrong. That I am just a mess. Can't get my life together. Who will stay with me. Take care of me. I can't be the patient. The needy one. I am the strong one. Dr. Rabbit. My fear of being alone is overwhelming. Of never moving on from this chapter. Never being free. Pain free. I am desperately trying to live a productive life. Unemotional at work. Working my ass off in school. But this pain is overwhelming. It's debilitating. I cannot function. I cannot move. I cannot succeed like this. I am a shadow. Living half a life. With no relief. No break for the future.

You think you see me. But you have no idea.

Distorted Religion Part 2

Would you ever park in a handicapped spot without tags
Do you run red lights
Drive through stop signs
Would you you ever hit a parked car and then drive off
How about a hit and run

What color is your shirt
Do you cover your head
Send your children to same-gender private schools
Consider yourself CHOSEN
"A light unto the nations"

Go ahead and leave a nasty message on my voicemail
Or better yet threaten me
Tell me what I am doing is wrong
And that I have a lot to think about
Who the hell do you think you are

I'm very aware that my mother hasn't been home in a year
Thanks for reminding me
And showing me the proper way to be
How to lead my life
You are a fantastic example

Threatening to call my Rabbi
What a move
As if we were playing chess
Trying to knock my piece off the board
When I was never really playing

You think you are representing Orthodoxy
In truth you are constantly distorting reality
This is not the religion that I subscribe to
You pervert the world
Create a nasty image

So make sure that your elbows are hidden
Your collarbone is suffocated by fabric
And not a single hair is showing
Eat only the strictest kashrut possible
And wait the longest possible time after Shabbos

I aspire to be just like you
As you spit in my face
And your husband tramples the Israeli flag
When your child destroys our property
I see where your priorities are

So go ahead and call my Rabbi
He's dealing with life and death
sometimes mine
He really cares about your law breaking
And petty behavior

Please keep calling me
Trying to prove your ways
You may as well hold a pillow over my face
Your suffocating life makes me ill
And I will never be like you

imploding

What happens when you drown

When you're drowning 

Falling 

When you feel nothing 

Total emptiness 

Lack of anything 

No will to live

Given up

Stopped fighting 

Let go

Are letting go

Nothing to hold on to

When you burn your skin 

And feel no pain

Or cut yourself 

And no blood comes out 

When you are bruised all over 

And raw to the core 

When your eyes are bleeding out 

Dream about death 

A funeral 

A different version of hell

Overdosing 

Institutionalized 

Immobilized 

Dunk your head in the toilet 

Drive off the bridge 

Smash into a million smithereens 

Combust 

Explode 

Implode 

What happens when you are numb 

Done 

Gone 

Dead 

Dead to the world 

Dead to yourself 

No will to live 

What happens when you dream

Of nothing 

Emptiness 

Die in your sleep 

The end. 

Poof

I sit here reading her response. And I'm just bawling my eyes out. Although, I was just waiting for that thing that would tip me off. Push me over the edge I was standing on. Unravel me. She always has a way with words. And I guess I'm just so vulnerable right now. Yeah me. Vulnerable. Shocker. Who would believe it. There's nothing that's right. Nothing feels ok. No stability. Pain in all directions.   Misery and sadness swallowing me whole. Sadly, I wish for a hug. A need for some comfort. A bit of love. Maybe some attention. Perhaps affection would do me some good. But alas, it is not there. Does not exist. Not an option. Not for me. Nope. Instead, I drown in my own sorrow. Suffocate in my own emotions. Disappear a little bit more each day. Until poof. I will cease to exist.

Migraine Cocktail

Once again

Back in the ER

5 pm

Friday

Flashbacks 

Uncontrollable pain 

Mechallel Shabbos 

Left alone 

Abandoned

Fend for myself 

Catscan 

Waiting room

X-ray 

Blood drawn

No good veins 

Nausea

Headache

Benadryl

Reglan 

Migraine cocktail 

11 pm

Waiting room 

Criminals 

Psychiatric patients

Homeless people

New iv 

Oxycodone

Back to the waiting room  

Dilated eyes 

Bright lights 

2 am

Exhaustion 

Seeing grey 

More doctors 

Another consult 

Resident

Attending 

Opthalmologist

Neurologist

4 am

Wide awake

Back to waiting room 

Remove iv 

Discharge papers 

Security 

Taxi 

6:30 am

Shabbos 

Home

Pain 

Headache 

Sleep 

Never ending 

  

Accountability

It seems self awareness is not enough. Instead, how bout we go to three different therapists. The goal is to find meaning in something. In life. To find accountability. To actually be held accountable. By someone else. From yourself. Setting goals is a scary thing. Once they're set, they need to be completed. No backing out. Must choose to face reality and not hide behind distractions. Cut off the ball and chain that has always been dragging behind. Take one step forward. Instead of the constant million steps back.

Grant Me One Hour

Yesterday was a crappy day. I was overtired. I haven't been sleeping. I was cranky. I felt alone. I felt betrayed. I felt used. I felt hopeless. I felt neglected. I felt withdrawal. I was reminded of where I am and who I am. Of what I have done. I received a large bill. Again. I was told I need another MRI. Need to go to a new neurosurgeon. 30 Page questionnaire. I had blasts of memory. Pangs of emotion.

And yet I felt nothing.

I decided to change my mood and went to the nursing home to visit my Bubby. Without fail, she always manages to lift my spirits. She is truly the happiest person I know. Bli Ayin Hara, at 104 years, she exemplifies how to live. She hasn't just been alive. She has lived. She is my role model. My hero. I wish I could be just like her. (Although I don't want to live that long) She sits at her table with all her friends around her. Each person is a "personality." There's Mrs. S., who speaks 8 languages and lived in Bnei Brak. So we always chat in Hebrew. She never likes the food served and can always be found snacking on crackers, when no one is looking. Yesterday, Mrs. S. was combing through People Magazine. Bubby glances at the magazine and rolls her eyes. There's Gigi, who is the "teenager" of the group. Her thick Russian accent always cracks me up. She always talks about the past and all the different countries she has lived in. She always wheels herself over to see if Bubby has eaten anything. She is currently annoyed that the hairdresser butchered her hair. Then there's the men's table. They keep to themselves mostly. Coming over once in a while to say hello, or just wink from across the room. They all light up when I walk in the room.

Bubby has lived a beautiful and meaningful life. I am petrified for her not to be around anymore. I know that it will happen eventually. But I am not ready to give her up. She is the only person I feel truly happy around. She sees through me. She sees my core. And loves me for who I am. No matter what. Ok, maybe she hates my nail polish. But she thinks I am absolutely beautiful. She loves everything I am. And she makes sure to tell me how wonderful I am. Over and over again. She always plays with my hair. She thinks my hair is stunning. Or as she says "wonderful." In her eyes, I am perfect. I am special. I am beautiful. The truth that I see all fades away. For an hour, I believe her. I feel like that person she sees. For an hour, I am happy. At peace.

But then it's time to leave. And reality hits as the automatic doors open. Back into the freezing cold world. Back to my real life. Back to the person I was an hour before.

Dripping With Anger

Really?

You're gonna say that I'm a bad influence?

You're gonna put this all on me?

I'm to blame for your behavior?

Are you kidding me?

Who keeps this family glued together?

Who makes sure everyone is taken care of?

Who? Who?

Who steps in when you decide to shut down?

And what have you done? 

You've shut yourself down

And you have the audacity to blame me!

Are you for real?

You can't even have a conversation

Instead you act like the toddler that you are

Avoid the people in your life

Your allies

Your support system 

Have I not been your sounding board for the last who knows how many years?

Have I not been the mother for your children that they never had?

Have I not stepped in for the wife that you never had?

Have I not been through hell in back and dealt with it alone?

Without parent

Without support 

Without love 

Alone!

Do you even know what I've been through?

What I've overcome?

Who I was and who I have become?

Do you know me at all??

I'm a bad influence? Really?!?