A Eulogy

Dear Ma, 

What can I say to the woman who brought me into this world.  You waited for so many years. So much pain and heartache.  You suffered through so much.  But despite all of the suffering, you were still my mother. Our Ma. You were so proud of us three children.  

The person that people saw in the last few years was not the real you. Although, your personality definitely peeked through. Your stubbornness. Your spunk. Your fight. You were a survivor. You taught me what it means to live. To hold on. 

I want to share some memories of the good times. 

Remember the time that we went horseback riding and you sat on the side reading a book waiting for us as a pig tried to eat your chair. 

Remember when you got your hair cutting license in Israel. You were so proud. Little did I know I would spend my childhood with short hair and short bangs as you would practice on my hair. Everyone in the Dorset area came to you for haircuts.

Remember how you were always bickering with Aunt Naomi on the phone and whenever you got together. You always argued about the time you walked through the glass door, you only got a book about animals, and when Aunt Naomi fell out of the car, she got markers. I can’t even count how many times I had to hear that story. 

Remember how you always had to match everything. Your shoes matched your skirt, which matched you shirt and eyeshadow. Your earrings were probably heavier than you.

Remember how you made coca cola chicken. Apricot meat that would melt in your mouth. And the best Bubby Kugel. 

Remember how you bought every Jewish book that came out. Your love for Rabbi Biographies. And millions of Miriam Adahan books. You went to almost every WIT class possible. Your notes were everywhere around the house. You went to shul every Shabbos. Always sitting up front. 

Remember Tai Chi. Remember how you and Bubby would be sitting by the window in Household two waiting for one of us to come. The minute you would see Abba walking towards you, you would stand up and mimic his motions. Putting your arms up above your head and copying all the arm motions he was doing in the parking lot. 

Your love for Abba was beyond anything. 

Remember how proud you were of Chaim. He is your pride and joy. Your obvious favorite. 

Remember when you found out you were pregnant withDevora. Was probably the happiest day of your life. 

Remember how you would talk to your father every day on the phone. 

Remember how you loved Simcha and Shira. How proud you were of the families they crated. 

Remember how grateful you were to Yechiel for the dedication and care for Aunt Naomi. You finally get to be with your sister. And your mother. And Bubby. You are finally pain free.  

Your hand has always been warm. You always smiled when you saw me. I am your first. My voice is the one you always recognize. I am your original. Been there through thick and thin. Ma. Please. I'm sorry. Sorry for this life you've had. Sorry for all the pain. Sorry I haven't always been there. I'm sorry.

Ma. I love you. Mommy. I’ll miss you. Imma. Forever your daughter.

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... 

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. 

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.

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.

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

ICP Monitoring

You know it's bad when I give in and go to the doctor. Again. The question is do we research the cause of these headaches aggressively? Or continue to "manage" things. I seem to be all talk in front of the neurologist. Confident that I want them to figure this shit out. But when I get home and research the testing they would do, I must admit... It kinda  freaks me out.

Or is it just that I don't want them shaving part of my head. My hair is finally so beautiful and long. Do I sound crazy? Or the fact that I have no one to talk to about this. Or better yet, wouldn't tell anyone that I would be in Hopkins for three days with a catheter in my head. I know I can't blame people if they don't know. But the truth is I'm sad and I'm in pain. Yes, even strong, obnoxious me needs someone right now.  Someone to talk this through. Someone to hold my hand. Tell me everything will be ok and that this is the right step.

To help with my diagnosis. Am I in remission or not? Are these low pressure headaches? Cluster headaches? Migraines? Or is it just my occipital neuralgia? Maybe my shunt is draining too much. Or maybe I've just convinced myself in the shower that I'm being paranoid. It's the summer. I always feel sick in the summer. This will pass, come cooler weather. Or that I'm not taking care of myself. I'm stressed. I have trouble with food. With sleep. And all these things are affecting me. Causing my head to feel like an explosion will go off anytime I laugh, cough or sneeze. Totally normal, right? Or how about the nausea and the acid reflux. Do I sound attractive yet?

So you know what I do to make my life better? I went cold turkey. Stopped all my pills. I told the doctor that I have had enough. I need relief. I have always believed that quality of life is better than quantity. And no, don't assume that this is me being suicidal. I'm trying here. Get it? This is me making an effort. I do want to feel better. Even if there is no one around. No one that really notices me.

Side point, I finally did something good. And again, I told no one. Because that's me. Ms secretive. Living a silent life. But you know what? Fuck you all! I'm going to stress about this and figure it out on my own. Just like I always have. And when I figure it out. I'm going to make my own decision. And no one one will tell me what to do. And then I will make something of myself. And I will never look back.

Don't you love how I'm all talk. Now you know the truth. I'm one big fraud.

Empty Tears

The tears. They are tears that don't come often. They hide inside. Refuse to leave their post.

You were supposed to protect me. Supposed to love me forever. Never supposed to leave my side. You were supposed to be my best friend. To love me. Forever. You were supposed to keep me. To hold me and never let go. You were supposed to please me. You had one job. To love me. To see only me. As your one and only.

But you forgot. You forgot about our love. You forgot about me. You got distracted. You chose your religion. You saw my pain. You saw me cry. You knew how much I hurt. But you chose your religion. Every single time. Your empty religion. Empty words. Swaying back and forth. No meaning. All by rote. Because it's all you knew. You couldn't think for yourself. You couldn't choose me. You chose your shell instead.

I was in the goddamn hospital for ten days. You thought I was going to die. How could you not hold my hand. How could you not comfort me. I was dying. I had no family. You were supposed to be my family. My support. My anchor. So you said tehillim. I needed your hand. I needed your love. Not for you to be the hero. Where were you. I needed you to hold me. So what if I was a fucking niddah. Do you think it was right for me to call the rabbi and beg him. To tell you to hold my hand. Is that how life is supposed to be. Is that what my life should look like. Is that the life I signed up for.

Do you think about me. Do you realize that you have damaged me. As you live your pretty little life. In your pretty little house.

How could let me go through that day. Have a friend scrub me in the shower. To get off all the hospital markings. As I throw up all over myself. Throwing up my pills. And then your goddamn mother comes to pick me up. Do you not feel guilty. Not at all. Or have you conveniently forgotten. And then your mother let me lay on the floor and all those women commented how cute it was that she brought me with her to work. Or how about when she helped me get undressed. Or how about when your mother walked me down the steps and helped me dunk in the goddamn water. Do you know what that does to a person. She let me dunk once. Because I was too sick to dunk more than once. And then she dressed me. There you were. Fucking waiting outside the side door with a wheelchair to wheel me home. As I throw up outside the shul. For all the men to see this pathetic woman in a wheelchair throwing up.

Do you think about that night. How I went to the mikvah sick as a dog just so you would take care of me. Does that sit with you. Did it ruin your life. Or did you forget. Did you move on. And then you threw me away. I let my soul go. I let it fly away. You watched it shrivel. And then you stepped on it. And you did all in the name of religion. A religion I don't subscribe to. No thank you. You can keep it.

And now what. I'm supposed to just move on. Forget. Live. Keep moving. Keep plugging away at this life. Where are those tears. Where is that religion. Why is the emptiness always there. Let the soul back in.

Not so easy.

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.

Never Dull

After Shabbos

Driving alone 

Road trip 

Music blaring 

Pop pop

Loud noise 

NJ TNPK

Highway shoulder 

Flat tire 

No answer 

Mile marker

Reading book 

AAA

Spare tire

50 mph

Exit 3

Motel search 

Indians 

Shady 

Rundown 

Econo Lodge

Room 101

Bolted door

No toothpaste 

Broken vending machine 

Eventual sleep

3:45 wake up 

Cursing

Fight 

Loud 

Shouting 

Police

Domestic violence 

8 am checkout 

Orange juice 

Banana 

Forgotten ring 

Pep Boys

New tire 

On the road again 

Monsey 

Friends 

Wedding 

Bride 

Dancing

Sleep 

Couch 

6:45 am

On the road again

4 hours 

Sleepy 

Work 

Sleep

Work 

Hopkins 

Sleep study 

The Real Story

I was diagnosed with Pseudo-tumor Cerebrei in November, 2009. Was admitted in Hopkins after a bunch of misdiagnoses. At that time, they found that I had a venus stenosis (which from my understanding, means a vein in the back of my head is small). They had discussed Stenting the vein. But it was decided to start with the medicine route. I also had third nerve palsy and 7th nerve palsy, with a lot of vision loss, specifically in my peripheral vision. I had received various lumbar punctures, all showing elevated pressures. And had a spinal drain. I was seen by Dr MA, a neuro-ophthalmologist at S and continue to see him. I was taking Diamox for fluid drainage and Topamax for my eyes.

In May, 2012, after taking myself off all meds because I didn't have insurance, i started having symptoms again and was admitted to SN hospital. There, I received spinal taps and decided to get a shunt. I did not want to go back on medication. My surgeon was Dr S, who inserted a non-adjustable peritoneal lumbar shunt. After my staples were removed, I began to feel much better and had been managing healthily for two year plus.

In October of 2014, I moved back to B and began seeing Dr A again. Presented with good visual fields and good vision. I also began seeing Dr MW at H as my new neurosurgeon to manage my case. He recommended that I meet with Dr DR at Hopkins to have a neurosurgeon familiar with my case in case of complication.

In July of 2014, I began feeling symptoms again. Headaches and nausea and after calling Dr W, it was recommended that I go straight to H ER. I was cleared by Opthalmology and never seen by Neuro. CT scans and X-ray showed nothing and I was sent home and told to follow up with my neurologist. Dr. W's office was very difficult to get a hold of. I was finally sent to Dr YC, a headache specialist and colleague of Dr W. With only a consultation and no testing done, she said that it was most likely not migraines and felt very certain that my symptoms were because of my shunt. On August 20, I went to H and had a lumbar puncture with contrast and then did three Shunt Patancy Studies over a period of 24 hours. A week later, i was seen by Dr R who confirmed that the shunt has malfunctioned and is not draining CSF. I am currently waiting to hear from Dr G's office in H to schedule a CTV. Dr R would like to find out if the I am a candidate for Stenting due to my Venus Stenoses before committing to replacing the shunt. I have not been able to reach anyone at Dr W office to get medication treatment in the meantime and went to my general doctor, Dr E R at S H. He prescribed Diamox and Zoloft and left messages for Dr W and his nurse practitioner CW. Dr R's secretary was informed by Dr W office that they no longer wanted to follow my case and felt that I should be seen completely by H.

So yeah...

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