Showing posts with label Chronic Disease. Show all posts
Showing posts with label Chronic Disease. Show all posts

Tuesday, March 21, 2017

Mourning

The Jewish mourning process is supposedly set up to help people mourn in stages. Five stages from what I've read in all those miserable books. Filled with rules and laws that no real human can follow. Maybe guidelines or traditions. Who knows.

The first stage is called ANINUT (or aninus for the Ashkenazic Americans). One who is in this in-between stage is called an ONEN. This person is free of all positive commandments. The law was established with the knowledge that all focus should be on the immediate death. I was in ONEN status for six hours.

It's not easy to get that call. And I have gotten it a few times over the years. The "you need to come now" call. And every time, I fly to the nursing home or hospital. Wherever we are spending our lives during those days. Driving like a maniac. Wondering is this it. Do I turn off the music. Do I run home and cut my nails. And, yeah, sometimes it was pretty scary. Walking into a hospital room. My family surrounding a large bed. With a very small person. My mother gasping for air.

But she has always made it through.

Except this time.

This was it. The final call. The call you think you have been preparing for your whole life. But when it comes. Total shock. Denial. Flying down the streets one last time. Maybe it is a false alarm. Maybe you misheard. Doubting your own ears. Your own comprehension. But you did hear it clearly. "Come now. Come now. Your mother is not doing well. You need to come now." And then within a few seconds, "she's very cold. She's dead." How can one deny such definitive words.

I entered the room and my mother was no longer. She was cold and grey. Her trach was disconnected. A gaping hole by her neck. Her eyes were slightly open. Limbs no longer stiff. Machines still beeping in the room. Feeding tubes and IV’s reaching to the floor. No longer attached. My father sitting by her side. Holding her hand. Crying silently.

My usual composure shattered. My cries uncontained. Sobbing. My mother died. My mother is dead. She lays before me but she is not there. I am motherless. I am an orphan. Have I willed this. This is what I always wanted. Freedom. From pain. For her. For me. Freedom from responsibility. So then why wasn't I ready. Why the intense shock. The overwhelming pain. How could I feel so alone. When she hasn't really been here for a long time. Maybe never.

Rabbi comes in and says we need to cover her. It's time. I scream and yell how I am not ready. I touch her feet. Something that she has always hated. Earlier years complaining. Recent years a grimace on her face. I stroke her face. Kiss her cheeks. There is no soul inside this hollow body. My mother died. My mother is dead.

We plan the funeral for later the same day. Allowing just enough time for family to come in from New York. The funeral home comes to wheel my mother's body out. All the doors are closed. We follow in sorrow. The tears just won't stop. At home, I shower and cut my nails. Not knowing when I will do them next. I sit on my bed to write my eulogy. Still regretting not speaking at Bubby's funeral. I will speak no matter how hard. No matter how painful.

At the funeral home, my siblings and family finally arrive. Thirty minutes after the service was supposed to begin. We all follow the casket. Of my dead mother. We enter a room filled with people. No seats left. People standing in every space available. No spare room to be found. In a box. In the front of the room. A large box. Way too big. My mother is dead. Inside this casket. A golden star of David on a blue cloth. Inside is my mother. My mother died. My mother is dead.

At the cemetery. We must rush. Have to beat the clock. Make it before the day becomes tomorrow. Lots of Rabbinic advisement. A rush job. Get the box in the ground. Cover it as fast as possible. So many people surrounding. All happening so fast. And then my brother says Kadish. For the first time. Something that he will have to say three times a day for the next year. Mourning publicly in front of a gathering of ten men. A minyan. Never to be missed. The mourners are ushered through two lines of people. One for the men and one for the women. And then we sit on the ground. Take off our shoes. We are officially in stage two.

The second stage includes the first three days of SHIVA, which immediately follow the burial. In an uncommon way. We started our Shiva at the cemetery. So as not to miss a minute. Delaying would cost us to sit Shiva another day. As we approach my father's house. Formerly my parents’ house, people are already on the porch. Waiting to comfort us. The mourners.

The point of this second stage is to allow mourners to experience their grief. Humans need time to be angry. To feel their feelings. Whatever they are. With no one to dictate how to behave. Mirrors are covered. Low chairs around the house. Hands to be washed. Washing away impurity. An egg to be eaten with bread. Symbolizing the circle of life. Perhaps. And in our case, due to the upcoming holiday, Shiva will only be during those three days. People will come in droves throughout the day. To comfort. Some to listen. Many to speak about themselves and their own pain or loss.

From early morning until late at night. I sat in that low chair. And I felt nothing. Empty. I laughed with some. But I could not remember any good memories to share. The disappointment in the picture painted of my mother. The careless things people said. The constant "well meaners." And yes. There were some who made a difference. But mostly numb. Until the night. When the house emptied out. When we laid in our beds. And we cried. I cried into my pillow. I sobbed. My mother died. My mother is dead. I will never see her again. I wasn't there enough. Who am I now. Without her.

The third stage is the reminder of the SHIVA. Literally translated as "seven." Referring to the seven days. This was more of a quiet stage for us. Unimaginable if we had to sit for an actual seven days.

The fourth stage of mourning is called the SHLOSHIM. Literally translated as "thirty". This stage refers to the thirty days from the burial on. Including both the second and third stage. I am now in Shloshim. The laws are not as strict as Shiva but they are still existent. Less joy. Less of everything. This numb feeling still overtaking.

And then she finally leaves. I am finally alone. After two intense weeks filled with people. I am back in my own place. My own bed. All I want to do is feel. So I open the link. And I watch the funeral. I cry out as if it is all fresh and new. It is fresh. I have not had a minute to feel anything. My mother died. My mother is dead. And now I am lost. I lay in my bed and I don't know what to do.

The fifth and supposed final stage is the year of mourning. It will be a long year ahead. Decisions to me made. Life to adjust to. New reality. New existence. Potential. Freedom.

Maybe the stages aren't so bad after all.

I was the Shabbat Imma in Gan. My mom always came. 

Wednesday, February 1, 2017

Surgery #8

They came to get me that Friday evening. Transport that is. Two women wearing nets on their heads, chatting the whole time about their lives. As they wheeled me into the elevator on the 12th floor, “bump” one of them called out to me. The pain was so overwhelming, shooting through my lower back. My back that had been cut open two days earlier to stop my leaking spinal fluid. Here I was having to come to terms with another surgery. Was I avoiding reality? In denial. Most probably. 

We get to the large pre-op room and I am placed in a little cubicle. Two men come forward. One steps close to the head of my bed and informs me that he is a graduate student and has to ask me some questions. Ok I think, here we go. And then he stupidly asks me if I have ever had any surgeries. Umm hello? Are you for real? Have you even read my file, I ask him. He steps back as if a wounded puppy and then the next guy steps forward. 

Now this guy looks more seasoned. Not his first time at the rodeo. I ignore him and watch the TV above my head as it silently plays Will & Grace. Alex is his name. He has a faint Russian accent and informs me that he is the anesthesiologist and apologized for his acquaintance. He clearly sensed my frustration. Alex is one of those doctors who emanates bedside manner. He stood there holding my hand and chatting as we waited for my operating room to be ready. He was trying to rile me up, kept telling me to curse if I felt like it. We schmoozed about his family and career and my past surgeries, good experiences and bad. I felt validated and listened to. 

Finally the time had come to head to the operating room. They asked me if I could scoot from my hospital bed onto the operating table. I find that table laughable. How is a person meant to actually lay on that tiny board without falling off? I always ask what a fat person does. The operating room staff snicker at my questions and sarcastic comments. I try to wiggle my way but cannot maneuver or bend my back without screaming in pain. Alex and the grad student grab my arms and lift me onto the table. Holding a mask over my face and reminding me to breathe deep breaths. It’s not working, I am still alert. I feel the needle puncture my hand as they search for a vein for a second IV. I wince and Alex grabs my hand tightly while gently rubbing my forehead and whispering that all will be ok and I am doing great. 

That is the last thing I remember as I drifted off into a silent reality. I woke up less than two hours later as they pulled the tube out of my throat, me vomiting everywhere. Wheeling me directly to postop, it was then that recovery would begin. The last four months would no longer dictate my life. This surgery was going to be a solution. No longer the bandaid approach.

To be continued... 


Thursday, January 12, 2017

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. 

Thursday, October 6, 2016

Bruised

I have been told by many recently that I should share what I am feeling. Not hold back. Playing the martyr. Adult. The one always in control. I'm afraid. Afraid that if I share, I will never survive. I will unleash this flood of tears that is suffocated so far down in my soul that I will not be able to stop. I will drown if I open up.

The truth is that I am bruised. Inside and out. My skin is black and blue. The staples go way deeper than my skin. They puncture my heart. Each metal piece cutting deeper and deeper until I am almost see-through. Non-existent.

I'm tired. Worn out. Beyond exhausted. Too much energy needed to pick up all the pieces. Again. Put everything back together. Function. Would you be surprised if this time I just can't. That I just want to give up. To be done.

Have I not lived long enough. Gone through it all. Put in my time. Why is thirty not considered a full life. I've given it all. I've lived. I'm tired. No more.

Whatever. That's it.

Thursday, March 31, 2016

Wake Up

I'm still here
And I am tired
I need a break
From life
From everyone
But mostly from myself
A minute
Would be nice
Of calm
Freedom
From reality
Life
Just one second
Pain free
No thoughts
Sleep
Why does my body
Betray me
Just need a break
Not sure how much more
I can take




Monday, February 8, 2016

Sarcasm is A bitch

Once upon a time there was a girl named Olive. She lived in her perfect little world where everything was amazing. She was surrounded by butterflies and unicorns. Money grew on trees. Her family and friends all adored her and appreciated all her many great qualities and talents. She was happy and healthy. Life was fabulous. She just emanated joy. She had a future. And lived every moment of her present.
The end.

Friday, January 15, 2016

permanently agitated

Am I agitated because my head hurts
Or does my head hurt because I'm agitated
Questions I ask myself
Every single day
Does everything have to feel
Like it's falling apart
Collapsing around me
Curve balls being thrown
Directly at my face
Tripping me as I move
Is the anger real
Or is it chemical imbalance
Am I kidding myself
Not going to therapy
No antidepressants
Faking this positive life
Suffocated by my own thoughts
Unable to handle real emotion
All sadness masked
Expressed as anger
Bubbling at the surface
Internal discomfort
Emotional immobility
Can't a girl catch a break
No pain
For a few minutes
No aggravation
For one day
Support
Attention
Love
Wouldn't that be nice
To feel like you belong
And not constantly abandoned
Over and over again
When will the agitation end
In others
Myself
Tell me. When.



Saturday, December 5, 2015

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.


Thursday, July 30, 2015

Dead Calm

Sometimes I wish I was dead. Shhh, don't tell anyone. It makes people uncomfortable. They want to tell you that you shouldn't feel that way. Or that you don't feel that way. They make a joke. Try to lighten the mood. But guess what. This isn't about you. I'm not trying to beat around the bush. I don't need you to tell me to go to my therapist. Or to go on medication. I don't need your answers. Your suggestions. Your opinions. Maybe I need you to listen. To hear me out. Listen to my pain. Maybe I just need to vent. To be. To feel. To share. A shoulder. Did that ever occur to you. Maybe it's ok that I feel this way. Death is not always a bad thing. The worst thing. Maybe it's a relief. A final calm. Eternal peace. Maybe I'm crazy. And no, I'm not suicidal. You don't have to worry. I'm not going to hurt myself. I have no plan. You don't have to jump to conclusions. Relax. I don't need to be watched or even worried about. I'm just telling you that sometimes I wish it was all over. That I was done. Finished. And that's ok. My feelings are valid. You don't have to run from me. Avoid me. Walk on eggshells. I'm going to be ok. I'm strong as always. I put on a good act. Not to worry. You can go on living your meaningless, insensitive life. I'm fine. Thanks for asking.

Tuesday, June 30, 2015

Pseudo means FAKE

It's too good to be true
You don't see what's under the surface
Don't look at me
And think you see me
All I want is to disappear
Crawl under my covers
The fan blowing
Someone take a knife
And make a nice incision
In my eyes
To let out all the pressure
So I can feel some relief
A pain free moment
Fluid free lifetime
I need a breather
Just one second
To myself
You ask me what's wrong
Half-heartedly
But you're not even listening
Don't even care
Can't understand
It's because I am ultimately alone
I struggle through all this on my own
Always by myself
My own problem
It's all under the radar
Because you can't see this disease
There are no outward symptoms
Pseudo
Therefore it means nothing to you
It's fake
Non-existent
I fight alone
So I appear grumpy
Or depressed
Miserable
Did you ever wonder if maybe I was in constant pain
That my eyes feel like they are flooding
My head might just explode
That basic conversation is so difficult
Friendships are a waste of time
That I am ruining everything
I just need someone to hold me
Take care of me
Call my doctor
Make everything ok
Hold my hair while I throw up
I need someone to drill a nice little hole
Let out the pressure in my back
In a little cord
All the fluid can come pouring out
Did it ever occur to you
That I might need
Me
Need

PS. This is a joke.













Wednesday, October 29, 2014

Spasms

I'm all alone. Laying here. In a hospital bed. In some exam room. In the neurology department. There's no one here. But me. And I can't stop the tears. I can't handle the pain. Spasms into legs. Sharp stabbing in my hips. A bruised back. Hole in my spine. In between two vertebrae. Laying here. In a skimpy hospital gown. No one around. Not a soul. It's me. Always me. Only me.

I squeeze the pillow. Try not to yell out. Not a single peep. No noise. Body bent. Back arched. Needles. Five times. Numb. Catheter. Cerebral spinal fluid. Pressure. Paralyzed. I'm silent. Until I can't hold it in any longer. The pain overwhelms. The tears explode out of my eyes. I gasp and try to breathe. The world is collapsing around me. Suffocating. Unbearable. 

I lay here. I'm all alone.

Sunday, July 20, 2014

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 
  




Tuesday, February 11, 2014

Suffocate me

I've scratched my legs so much, they're covered in scabs. My thighs are covered in bruises. My anxiety is getting the best of me. My mind has taken over. Thoughts control my life. The past suffocates me. People overwhelm me. I'm alone. Always alone. I'm sinking. The life boat is out of reach. I'm sick of swimming. My whole body hurts. My mind aches. I'm so tired. I need a vacation. From life. From myself. I want to be left alone. I want someone to hold me. Someone to notice. Someone to care. Please take this burden off my back. It's weighing me down. It's killing me. Slowly. Not quickly enough. I'm so tired. All alone. Always all alone. Love doesn't exist. Not accessible for everyone. Unattainable for me. Destined for misery. Pain and loneliness. Sadness. Numb without emotion. Alone. Strong for the world. Weak in my heart. Failure. Alone.