2 Months

Feelings are a complicated thing. You feel them. And avoid them at the same time.

Claim to be numb.

But sometimes cry your eyes out. Pillow soaked in your sleep.

2 months seems like a short time. But it feels like ages.

So much has changed.

I am mother-less. An orphan.

Two months ago. I had a mother. And today I do not.

I will never get to hold her hand again.

A cemetery is just a place. She is not really there.

Bones. Underground. A temporary marker with a name and date.

I know I should go on my own. But I am scared of what I will feel.

I want to lay on her. My head on hers. My legs on hers.

I want to crawl inside the box and lay with my mother.

I miss my mother.

Ma. Why did you leave.

I write this and tears fling down my face.

This is why I have avoided writing. Painting.

Anything that involves real emotion.

Ma. I miss you.

Everything is different.

A lot of good thing things have happened. And I can't share with you.

You are not here. You are gone.

Some painful stuff. I wish You were still here.

So I could crawl into your bed. Lay with you.

2 months ago. I buried my mother.

I saw her for the last time. Placed in a box. Placed in the ground.

My mother is gone. And I have to keep going.

Ma. I miss you.

20 Days

I went to the cemetery. It’s Rosh Chodesh Nissan. We’re not supposed to go during Nissan. We don’t get to go on the final day of shloshim. 

My mother is buried under that patch of ground. She is in a box. I don’t even know which way she is facing. Is her head up or down. Where are her feet. Her head. Has she started decomposing. 

It’s weird to stand there. I want to feel sad. I don’t understand how we’ve gotten here. Why has life brought us here. I don’t understand. The ground is sunken in over her box. The ground has settled. The marker at the foot of her grave has an incorrect date. In English and in Hebrew. How can they get such an important date wrong. 

My father cries when he reads tehillim out loud. Only then can I start feeling sad. Do the tears come. It hurts that she’s gone. I feel guilt that I have wished her dead for so many years. 

I miss visiting her. Holding her hand. Watching tv. Listening to music together. I miss her faces. I miss taking her outside and tanning in the park. I miss seeing her face so excited when I walk in the room. Throwing her hands up in excitement. I miss her knowing my name. 

I feel this constant guilt. And I wonder why I am not feeling sad. Why it’s so hard to cry. Why I mostly feel nothing. Empty. Walking around in a haze. 

I miss listening to music. The quiet is so hard. I need music to help me feel. It’s been twenty days without my mother. And everything feels so different. It feels so much harder to connect to my family. 

Feels so much harder to connect in general. Why am I so hard on myself. Why is there no clear way to deal with all of this. 

Twenty whole days without my mother. And I feel like I wasted all that time she was alive. I could have made the most of it. Instead I complained. I was bitter. I should have gotten to know her. Outside of the illnesses. I shouldn't have blamed her. I should have understood. 

And now it's too late. She's gone. She's in that grave. In that sunken in ground. With a marker that has the wrong date. And I am here in the silence. Trying to feel. 

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.

Ma

Mother. Is an abstract concept. A given. Everyone has one. Or do they. Biological. Part of humanity. Society. Way of life. But is it. Some do not choose it. Others forced. Precious few are deserving.

My mother wanted me. She waited and waited. Let down one too many times. She suffered. Suffered for years. Much heartache. And then I appeared. Tiny but not really. A bundle of joy. Surrounded by difficulty. Constant suffering.

Ma. Mommy. Imma.

Where are you. Why does this keep happening to you. To us. I just don't understand. How are you able to withstand all this pain. All this sorrow. Ma. I wish you knew who I was. I wish you were my real mother. I wish you could make everything ok. Make me ok.

I can't look at you. So pathetic and sad. So small. How did we get here. How did this become our lives. How could I have thought we hit rock bottom so many years ago. And look at us now. Broken. Alone. Ma. Where are you. Open your eyes. Can you hear my voice. Blink.

Where is the justice. On your birthday. Is God mocking. Playing the evil puppeteer. We are helpless marionettes. Ma. Wake up. Breathe. Take those precious breathes. Fight. Don't leave me. I can't live without you. I need you more than I have ever realized. So what if you weren't perfect. You were still there. And maybe I wasn't always there. Still not. But I knew where to find you.

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.

If it's your time. Then let go. It's ok. We will all understand. We just want you to be calm. At peace. Pain free.

Ma. I love you. Mommy. I need you. Imma. Forever your daughter.

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.

6 Years.

6 Years.

72 Months.
2190 Days.
52560 Hours.
3153600 Minutes.

Time is a funny thing.
Slows down when you need it to pass.
Flies by when you want to catch the moment.
You can't change it.
Only relive it.

Time has a mind of its own.
Memories are confused.
Brain in a fog.
Thoughts rearranged.
Is any of it true.

Time never leaves.

Always in the background.

You can't escape it.
Only avoid suffocation.
Wait to forget.

This day comes every year. 

Less and less meaning. 

As time evaporates. 

Memories fade. 

Tomorrow is another day. 

Written By My Sister

Hi everyone. Tonight I want to share my mother with you and the journey my family has been through throughout our life.

When I was four years old my mother’s kidney failed, yet she was successfully able to have a transplant from a three year old donor. This wasn’t all. She was also diagnosed with diabetes and a hearing impairment. My mother is a petite and fragile lady; she weighs roughly the same as the average 9 year old. I can barely count the many trips we took back and forth from the hospital. All I can say as life went on, so did my mother’s health as it slowly deteriorated more and more.

In 8th grade my mother completely lost her hearing, not just in one ear, but in both. She underwent surgery to insert cochlear implants. These are magnets inserted in the brain, connected to an outer piece, and without it she is completely deaf.

The summer going into highschool I was fortunate to have been able to attend sleep-away camp. This opportunity allowed me to feel like any ordinary 13 year old girl. As I was coming home, I was most looking forward to having my mother pick me from the bus. But as the pulled in to the parking lot, I saw my father sitting there instead, I automatically registered something was definitely wrong. My father then told me the news that would change my life forever, my mother’s health was spiraling out of control. My mother had a stroke leaving the left side of her body severely damaged. That summer was the beginning of a new reality. Instead of me spending my summer shopping and having fun with friends, I sat by mother’s side in the hospital and prayed for her recovery. Fortunately, we were able to bring my mother home a month later. Along with my mother’s presence came nurses and physical therapists who attended for my mother when we weren’t home.

Half way through 11th grade my mother developed a disease called fahr’s disease. For those unfamiliar with the disease symptoms include; deterioration of motor functions and speech, seizures, and involuntary movements, headaches, dementia, vision impairment, tiredness, slow or slurred speech, difficulty swallowing, and neuropsychiatric symptoms. These are all symptoms similar to Parkinson’s disease. All of this is caused by a buildup of calcium in the brain. Unfortunately, there is no cure for this.

Because of all these symptoms we are no longer capable of taking care of my mother in our own home. From that point on till today, my mother lives in a Jewish nursing home that I and my family have spent that past three years of our lives.

Just like most of us, I haven’t seen my mother in the past 9 months. YET FOR ME IT IS SO DIFFERENT. As of this year my mother is no longer able to walk, my mother is no longer able to speak, and my mother barely knows my own name.

Just imagine if YOU had to shower your own mother. Just imagine if YOU had to dress you own mother. And just imagine if YOU had to feed your own mother.

• A major lesson I have learnt from this all is that in life we are given our own personal situations. I knew I had no choice but to accept mine. 
• I learnt the real meaning of chessed. From all the volunteers who are still constantly helping me and my family. 
• I learnt that the phrase “I am bored”, should never be said. Because then Hashem will place something in your life so you won’t be bored. 
• Lastly, this lesson we can all work on. THE POWER OF SENSITIVITY! It is so easy for all of us to just talk without thinking. We all discuss topics without thinking who in the room my words might be targeting. 

Just a simple example;

Many times people talk about how they miss their mother’s homemade food.
But for me I just miss my mother’s presence.

Many people complain about doing chores to help their mother.
But I just wish my mother could ask me to do something for her.

I want to end off by saying we should all look around and recognize the people we have in our lives; for some people it’s their family, some friends, and some teachers, but regardless of who they are it’s what they are to us.

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

another goodbye

I guess I am at a loss for words because there is so much to say and yet it is all so difficult to verbalize. How can I really explain where I am coming from. What I am feeling. What my goals are. Does it even matter.

I have been thinking about this since your first email in January. And I decided to just ignore your attempts and hoped you would get "the message" and stop. But I guess my silence was not definitive enough. Left an open door. Or maybe just a window. And it seems like it was my subconscious way of not having to do anything. Of never actually making a decision. I know I am not making any sense. (My specialty.)

What I guess I should tell you is that I do wish I could have you in my life. But after we stopped talking in June, it was very hard. Very painful. But I understood. The reasons we had then - made sense. They were for the best. And I moved forward. And now you've sorta opened the possibility again and I  have kept weighing all the options. And nothing has changed. Well I have changed. I have changed my life. Made smarter choices. Real choices. I finally see a future. And I am working toward it. And, (here I will say it), while I really care for you, about you, (and don't shoot me - but miss you), it's not what's best for me. I need to live in reality. And there's no way you can be part of that. So, yes there are great memories. An insane connection. But this will just end badly again. We CANNOT give each other what the other needs. And that is the bottom line. There is no casual friendship in our cards. We are not capable of it. It will get heavy and then painful. Look how painful it is now.

I don't know if I am making any sense. And I told myself I would write a concise email. But I know that I owe you some detail. I don't hate you. Anything but. I want only what's best for you. And I only have good thoughts when it comes to you. So don't think that this decision came lightly. And that it's not hard for me. But in the end of the day, I have to choose myself. My future. And not something that might make me happy now. Instant gratification.

So my request is that you delete everything and let me go. That you understand where I am coming from. And respect my decision. Our decision. I'm sorry if this is not what you want to hear. It's not what I wish I had to say. It was all real and I remember too. But it is the past. And has to stay there.

Please.

Goodbye.

My Life

While going through old boxes in the back of my closet, I found a lot of shit. Dishes. Clothes. Scrapbooks. Albums. Pictures. Letters. Memories that had been packed away. Mostly forgotten. Not sure what got into me. Why the nostalgia need. Most definitely was a bad idea.

I can be vague here as is my norm. Or I can just be honest. Tell you that seeing those albums was painful. Although I laughed and fake-gagged at the time. I can say that I am over it. It's all the past and doesn't affect me. But that is not the truth. I did flip through those pictures. Glanced at the scrapbooks containing hundreds of letter. Handwritten love letters. Flashing back to another time. A time that was less complicated.

I saw myself. What outsiders saw. Religious. Observant. Following the rules. Whatever you want to call it. I was playing the part. Living the lifestyle.

I know now that it was all a facade. Waiting to crash at my feet. Living in a fantasy land. Surrounded by infatuation. Desire for a future. No understanding of the present. Of the facts in front me. Avoiding reality. All to live in delusion. A dream of what I wanted and not what was.

I gave up myself. I lost who I was. And I did it willingly. I followed a path that I didn't want. To fit in. To please everyone else. But I was not happy. I was controlled. Miserable. I was uncomfortable in my own skin. I wasn't authentic.

And that's not who I am. Who I ever wanted to be. All I ever wanted to be. Unique. To be authentic. What you see is what you get. Not two-faced at all. Honest to a fault.

And now, although a lot has changed. It is not a bad thing. Looking at my face in those pictures, I see a lonely and sad girl. Standing at a distance from those around her.

Lost. Alone. Leading a life that is not her own. Trapped in a life she doesn't desire.

Today I am grateful. I feel lucky that I have myself back. That I am living my life. As I want to live it. And I won't take that freedom for granted. And I won't lie and say that it isn't hard. Doesn't get painful. The loneliness is definitely there under the surface. But I  no longer feel hopeless. Because my happiness and my life do not depend on you or anyone else. It's internal. My choice. My goals. My life.

My life.

Vanishing

Once again it's July 18. This dreaded cursed day comes around every year. Taunting me. Haunting me. The details are slightly vague but the memories are there. They beat alongside my heart. Pulsating in my brain forever. Refusing to let me forget this day. I take a sleeping pill  but I couldn't sleep a full 24 hours. No chance at ignoring this crapday. No meals planned. No people to talk to. No family around. Alone as usual. Because that is my destiny. That is the life that I lead. The life of a nomad. Vanishing slowly. Day by day.

i wish...

Well that was disappointing
I shouldn't have waited
Never had expectations
Wish we had never been introduced
You had never reached out
Not the first time
And especially not the second
I wish I had been strong
Made smarter decisions
Followed my brain
And not my heart
Never let you in
I wish I had never exposed myself
Been vulnerable
Made me laugh
Or smile
I wish you didn't know me
Understand me
Leave me
I wish this wasn't so painful
That you weren't gentle
And kind
That you didn't listen
Or critique when necessary
I wish you didn't call me out
Or look at me like that
With those eyes
Like you know me
I wish I had never met you
Touched you
Felt you
That day
I wish for many things
But most of all
I wish I could forget

Big Brown Eyes

I hesitate to go into her room 

I don't want to wake her

But I want to bring her clothes into her room 

Make sure she is ready for tomorrow

The lights are off 

She is still awake 

Peacefull 

She looks at me with those big brown eyes

She is snuggled in her blanket 

I check to make sure she is not wet 

Give her lots of kisses

She smiles at me 

I Choose her clothes for the next day 

A matching grey outfit 

Cute little shoes 

Place them at the end of her bed

Quietly close her dresser 

I get into bed with her 

As she curls into my arms 

Her tiny body barely taking any space 

She looks at me once more and smiles 

Her long eyelashes flutter 

And she drifts off into a deep sleep 

As I hold her tight in my arms 

I am grateful 

She is my mother 

Don't bother Reading this - it's about someone else

M
Sometimes I feel like I'm sinking. Like there's no floor. Like my head is in a fuzz. I wonder if it's my actual depression taking over. Taking control. Or is it just my head hurting. Should I feel like crap all the time. Is it my own doing. Not sleeping. Should I be miserable all the time. Feel like a ticking time bomb. About to go off any minute. Am I this person. Was I always this way.

T
I don't like it when you look at me like that. When you think I'm pathetic. That my life is so sad. Don't ask me for a hug. You don't know me. You see this outside persona. A controlled being. Yes, I come off as strong-willed. But it's all a show. I'm not real. I hide. It's how I survive. I function. You think I need to be mothered. Well, no duh. Maybe I should self-mother. What a load of crap.

D
I judged you. I always judge you. You have destroyed. Who are you. Am I just like you. A bad person. Hurting people. Ruining lives. Just like you. Everything you touch. You destroy. You used me. You use everyone. You are selfish. You made me distrust. And now where are you. Why do you have space in my brain. Why do you continue to live life. While mine is always on pause. Continuously on hold. How can I still blame you. Think about you. When you are the past.

R
It was too much. Drama. And I know I am one to talk. But I couldn't carry your burdens. Your emotional baggage. I care. I'm sorry. Your life was too complicated. I needed space. You didn't understand. My depression. I had to hide. That's not a friendship. I care. I am hypocrite. But I come first.

E
You live your life. You have a life. I was just a glimpse. Momentary. A friend. Intense. But now what. Everyone leaves. Always. There's no point. Where is the decency. Where is the justice. Don't bother. The TV is my real friend. You were just a facade. I never needed anyone. Vulnerability is dangerous. It opens you. To pain. To sadness. To rawness. To feel.

N
You don't occupy space in my head. You don't matter. Not at all. I am free. Completely.

Seriously. Like I said. Don't bother Reading this.
Any similarity to someone you know is just a coincidence.
Move along.

devour me

You didn't listen

I told you no

I tried so hard 

To end things 

I was hoping 

You would get the message 

Let me off the hook

Do the right thing 

Be the stronger person 

You kept talking to me 

It wasn't over 

I couldn't stop 

I needed one more second 

You wanted more time

Saw that I was weak 

You sat around the corner 

I went against my morals 

I walked to your car 

I got in the passenger side 

We were silent 

Like we knew each other 

For a lifetime 

A magnetic pull 

Drawing us closer 

You drove to a parking lot

I kept shaking my head 

Knew this was wrong 

So very wrong 

But I didnt stop you 

I just wanted to be close to you 

Even for one tiny second 

I needed the attention 

I felt the desire

My body was shaking 

My heart was beating 

You said you just wanted to be near me

All you wanted was to touch my face 

It had been so long

Since I had felt anything 

Let alone touch

And then you touched my face 

You ran your fingers along my lips 

Pulled me towards you 

A small kiss

Your hands in my hair 

I knew we should stop

But I wanted more 

I craved more 

I needed you to touch me

To feel me 

But I kept sitting back 

Shaking my head

It was all wrong 

We were all wrong 

And then you drove

To a more deserted location 

And I felt your tongue 

I tasted your mouth 

Your hand tried to travel 

I stopped you

And then you held my hand 

I wrapped my fingers in yours 

I just wanted more 

I wanted you

I wanted you to want me 

To devour me 

Whole 

But we kept stopping

Holding back 

A ticking time bomb 

About to explode

The desire was flooding the car

Intensity 

You laid on my chest 

You felt my scar

And your fingers tried to travel 

But I pulled you away 

We were on the verge 

Of insanity 

Torture

And then you got your bearings 

You buckled your seat belt

And drove me back 

I got out of your car 

And I kissed the window 

I left my lip print 

On your car 

So you would always see me there 

Never forget me

Or that moment 

And then I ran inside  

Guilt overwhelmed me 

But so did desire 

I wanted more

I wanted you

I got moments 

And they began fading 

Sporadic memory 

Of your lips on mine 

Your fingers on my face

Your head on my chest 

A moment that came and went

Disappeared 

I was reminded 

I was awakened 

I felt

I desired 

I was real 

During that entire moment

I was real

I was alive 

And then it was over

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/