Tag: death

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My Fate is Sealed

Today was Yom Kippur. The holiest day of the year in Judaism. A day of atonement. The day our fates are sealed for the following year. It is a day of fasting and a day of prayer. While I was never religious growing up I have fasted on Yom Kippur every year since my Bat Mitzah, and gone to synagogue every year since high school (my family wasn’t observant but Judaism has always been important to me). This year I did neither (well David and I did go to a remembrance ceremony at temple but it wasn’t a service, more on that to come). What is the point? I have prayed and fasted and been a good person and for what? For my life to be destroyed. For my heart to be shattered. My fate was sealed the second Ariella took her last breath. Destined to live the rest of my life in pain and sadness. I am living through the unbearable, the worst nightmare a parent could go through. Whatever fate has in store for me, it cannot be worse than my current hell.

Not only did I not fast and not go to services, I actually went to work today. And I feel like I should feel guilty about that, but I don’t. None of it means anything anymore. I find no comfort in it, only anger. I mentioned a ceremony earlier. Later in the day the rabbi had a ceremony prior to the remembrance service. The remembrance service is in memory of all who have died but the ceremony prior was for those who have lost someone in the past year. We each lit a yahrzeit candle (a candle lit in memory of the dead) and said who we were there for and shared a little bit about them. Most people there with the exception of one other family, were older, with the death of their loved ones as part of the natural order. They felt their losses deeply, their grief was apparent, and yet they were still shocked and saddened when they heard our story, and went out of their way to give us hugs and their condolences. I wish I could say I returned their sentiments but I was so distraught after talking about Ariella that I just couldn’t care about anyone’s loss but our own. It was just so wrong, to be standing there among an older crowd of people who were sharing losses of spouses, parents and grandparents who lived a full life, and us sharing the loss of our 11 year old daughter. I am not sure what I was hoping to find from the ceremony. Maybe some comfort, being able to be in a room and cry with others. Sharing Ariella some more, remembering her. But all it did was reaffirm the unfairness of it all.

Today also marks 5 months without Ariella. All of her favorites are approaching. Halloween, Thanksgiving, Chanukah. I wish I could go to sleep and wake up after the new year. Well really I wish I could go to sleep and just not wake up. I just can’t do this. I don’t think I can do this. I don’t want to do this.

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Two Worlds

All these words. These thoughts and feelings and emotions.  Words I have written over the past few months. Words that cannot begin to describe the anguish, heartache, and despair from which I am suffering.  Oh how I wish they were just words. I wish this was just a story I am telling. No one else’s story in particular because I would not wish this nightmare on anybody.  But just a work of fiction.  

Devastatingly this is no tale.  This is real life. My life. My life that feels surreal now.  This can’t be my life, can it? Parents don’t bury their children.  Children don’t die. But they do. They are not supposed to, but the harsh reality is that children die every day and parents grieve the loss for a lifetime.  

I feel like I am living in two separate realities.  There is the one, the horrific life in which my daughter is dead and she is all I think about, day and night.  I think about the memories we have made and the memories we never get to have. I think about her smile, her laugh, and her spirit and cry until there are no more tears left.  And there is the other life, still horrific, and my daughter is still dead and she is still all I think about. But in this life I have to go on living. Against my will I have to live life.  My heart continues to pump and my lungs continue to breathe. My body begs for food and water. The bills have to be paid. I must go to work. In a world where everything seems meaningless, where life seems to no longer have a purpose, I must “move on.”  

It is next to impossible to reconcile these two worlds.  How can I go anywhere, interact with anyone, converse, like everything is okay?  It is not okay. None of this is okay. And yet I am forced to live like it is. No matter where I am, who I am with, what I am doing, this refrain is repeating over and over in my head.  Ariella is dead. Ariella is dead. None of this matters because she is dead. People who don’t know me, who don’t know I once had a daughter and now I do not, cannot begin to guess the turmoil brewing in me.  I live in two worlds. One an unspeakable nightmare and the other an unspeakable nightmare in which I pretend it isnt.  

This life of mine feels like an illusion. Or an alternate reality.  Going about normal business, making conversation, even getting dressed each day just feels wrong. How can I do normal things when life is anything but?  How do I find it in me to care about anything anymore? On the outside I look like any person living life but on the inside the heartache and sadness and anger are bubbling inside me, threatening to boil over at any time, scalding me in the process.  

I cannot begin to guess how my story will continue to unfold.  I do know that sorrow, pain, and anguish will be a consistent theme.  I viewed Ariella’s battle with cancer in chapters, because with cancer there is no end until you reach to reach the ultimate end.  The first chapter was her first line of treatment. Second chapter was off treatment and third chapter began with her relapse and ended with her death. My story is broken up into two chapters.  Before she died and after. This second chapter will cover the rest of my lifetime. When the world dropped out from under me, when everything changed, when life can no longer be carefree and just happy.  No matter what happens in the future chapter 2 will be imbued with sadness and longing.  


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A Letter from Grief

Dear Erica,

You thought you knew me.  We were acquaintances. I have made several appearances throughout your life.  I was disruptive but not destructive. When your friend died in high school I hung around a bit, an almost comforting soul reminding you of the memories you cherished with your friend.  I was not the powerful force to come later.  

Even when your father died I had yet to be a destroyer.  I was a dark shadow dampening your spirit, darkening the days.  Initially I was everywhere, invading your every thought, creeping into your brain with my long, thin fingers.  But I did not have a powerful hold over you. After some time you grew stronger than me. You were able to push me aside and allow other thoughts in.  

But now, Erica, I am a force to be reckoned with.  I am no longer this frail figure hiding in corners, easy to overcome.  I am a monster. A huge, burly creature that will crush you with the weight of me.  I will pound you, shake you, batter you until you are hurting in every bone, aching in every inch of your body.  I am a mist, a fog that will seep inside your mind, spreading into every cell, until you will be so consumed that you will be unable to complete even the most simple of tasks.  No longer a mere acquaintance, I am your constant companion, never leaving your side even for a moment. I am there when you shower, there when you exercise, there when you are with your friends, there when you are trying to avoid me.  You can’t avoid me. Even when you think you can I am hiding under the bed, in a corner, behind the trees, ready to leap out at you when you least expect it.  

But I am not the bad guy.  You need me. Because the most important person in your life died.  The person who completed you, who made you whole, is dead. You cannot ignore that.  I will not let you ignore that. I am here for you. I am here to make you feel, to make you face your loss.  Because only once you face me, every hideous inch of me, can you learn to live with me. I will never go away.  I have picked you up, shaken you, and turned you upside down. I have dropped a bomb on your world, causing an explosion to reach the ends of the Earth.  That cannot be fixed. I cannot be defeated. However one day you just may be stronger than me again. You may be able to push me away sometimes. I may not always be able to flood your brain.  You may even find periods of happiness though they will be tainted with the shadow of me. And I will always return. You may not know when or how but I will be there, for the rest of your life. Get used to me.  Get used to my heavy presence, my oppressive soul because I will be weighing you down, causing you pain and shattering your world over and over again. You will never rid yourself of me but you will get used to me.  In fact, you will hold on to me.

Something else you should know.  Others will think you need to let me go. They will think you are stuck on me, that I am not healthy for you, that I am holding you back from living.  As I said, I am not the bad guy. I am here for you as long as you need me to be. But I cannot make others understand me. I cannot make them understand that though I am ugly and scary and invasive I am a necessary evil and not something to just “get over.”  I cannot make the others understand until I am the same companion for them. The only way to understand me is to know me. You and I have a complicated relationship. You may hate me and you may cling to me. You never know when I might appear and that makes you angry with me.  But you need me and will know me forever.

Yours to hold forever and always,

Grief

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The Truth about Grief

No matter what I say, how I look, or what I do, I am not okay.  I am almost always on the verge of tears, unable to predict what will ultimately send me over the edge. 

Though I may be out, interacting, and doing seemingly normal things, it is sapping all my energy and all I really want is to be at home buried in my blankets.  I can’t go anywhere without an escape plan. 

No matter where I am or who I am with most of my thoughts are filled with Ariella.  Even if Ariella was never a part of a situation I may be in, I am thinking of her. She never leaves me. In fact in some ways she is more present now than when she was alive because my mind revolves around her.  What she should be doing, what she is missing, what we are missing, the future we no longer have. Every situation, every activity, every single facet of my life I am aware of her absence. No matter what I try to do to distract myself, no matter how distracted I seem, she is there, in my mind, in my heart, in my soul.  

Every single day I beg and pray to die so I can be with her and end this pain.  Even if I manage to have a day with some smiles and laughter. Every time I hear of a fatal accident, or someone that died of a heart attack or freak accident, I think “why couldn’t that have been me?”  I don’t want this new life of mine.

There is no moving on, no getting over this.  I will never get over the death of my daughter. I will never move on from Ariella.  At most I can hope to learn to live with it and come out of this depression that squeezes me tightly in its grasp.  

I am not living, I am only surviving (barely).  I feel like I have nothing to live for and am just existing to get through each day until I can go to sleep again.  I don’t understand the point. There is no point. What is the reason for living if there is no purpose, no joy, when your whole goal is to just survive another day while in the throes of deep anguish?

I suffer from PTSD.  I have frequent flashbacks of Ariella in the PICU.  There is no warning and each time I feel like I’m punched in the gut, I want to throw up, scream, yell, drop to my knees.  I’m not always in a place where I can do that. These are extremely traumatic images and I can’t escape them, I can’t choose not to see them.  My heart shatters again and again every time I see her in that hospital bed, sad and uncomfortable and scared. I would trade my life for hers in a heartbeat.  

Grief is more than just feeling sad.  It invades every part of your life, seeping into the farthest corners of your body and mind.  My body physically hurts, all over. I feel nauseous much of the time. I get frequent headaches.  My body shakes. My appetite changes constantly. From no appetite at all to I can’t stop eating. I can’t concentrate on anything for very long.  I lose track of conversations, stop hearing what someone is saying, lose my train of thought. My brain is in a fog. I can be in an aisle of the grocery store and forget what I am doing there, forget what I am looking for. It’s hard to pay attention to things around me, impossible to multitask.  My memory is shot. I forget to do simple daily tasks, return a text, send an email.  

Any excursion out of the house is fraught with anxiety. I am in a constant state of fight or flight.  Who am I going to have to talk to? Who will I see? Will I have a breakdown? Will I have to tell someone who doesn’t already know?  What will trigger me? I am constantly dodging landmines.  

I am forever changed by Ariella’s death.  I will never be the happy, content person I was before she died. I’m afraid to see who I will ultimately become. 

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Sleep

Just a note, after I finished writing I realized it may be too graphic for some to read. I didn’t go into much depth but I talk about images of Ariella in the ICU. If that’s too much for you I advise you to skip to the last paragraph.

Sleep. Sleep continues to be elusive. Once I fell asleep last night I mostly stayed asleep but it took a very long time for me to fall asleep and I was up early. I have a reel of images running through my head and I can’t turn them off. These images mostly attack at night, though I do get flashbacks of them throughout the day. All images of Ariella in the PICU. Shattering images of her scared eyes when they were prepping to intubate her. Crushing images of her with her sad eyes and miming that she wanted to drink. Devastating images of her writing on her white board “What if I die?” and “I want to die. This is horrible. I might as well be dead.” Asking “am I getting worse?” Heartbreaking images of Ariella on her side when they were cleaning her, in obvious discomfort and a tear dropping from her eye. Distressing images of Ariella practically lifeless in bed, barely opening an eye even when being poked and prodded and moved around. These images do not leave me. I feel such anguish that this is how she spent the last two months of her life, mostly awake and aware. She wasn’t in pain but she was extremely uncomfortable and miserable.

Also very sad to remember are the few positive moments we had in the ICU because at the time, they were positive. Ariella being so excited for a taste of popsicle and Rita’s that she wanted me to tell everyone about it. Ariella being so excited for her tracheostomy surgery because it would mean the tube would be out of her mouth and she would be able to drink and talk. That was another milestone she wanted me to share with everyone because she was so happy about it. When Ariella woke up after her surgery she gave me a big smile when she realized the tube was out. We all thought that was going to be the turning point to get her out of the ICU. We had talked about what Ariella should get following her hospital stay as she deserved something big. And she said, well wrote, “how about new shoes?” All the hell she went through and was going through and she asked for shoes. Broke my heart. The last thing she had looked forward to was finally getting water. She was able to get just 5mL at a time about 3 times a day to start but boy was she happy to get just that. That’s how horrific it all was, that drops of water and tastes of a popsicle could bring that much joy. She had everything all planned out once she got out of the ICU. A big glass of water in the purple cup she won playing bingo, milk, Rita’s, and a shower. And then a big steak dinner when she finally got out of the hospital. None of those dreams were realized. She was on the schedule to have a swallow study completed but it never happened because she took a turn for the worse. After that she never fully recovered. The only comfort I take from this is that she was sedated near the end so no longer uncomfortable and scared.

To contradict myself now, I am glad Ariella was sedated for her sake but I regret not having the death talk with her. When she asked earlier in her stay “what if I die?” everyone thought she would recover and come off the vent, her lungs just needed more time. We did not promise her she wouldn’t die but we did say the doctors were doing everything they could to prevent that. When it became apparent that there was a good chance Ariella wasn’t coming home with us she was mostly sleeping so we never got to talk to her about how she was feeling about dying. By then was she scared to die? Or was she ready to die? What did she think would happen once she died? Where did she think she would go? What, if anything was she worried about? We have talked about death before and what happens after someone dies and Ariella believed in Heaven so I just hope with all my being that by then she was no longer scared to die and was ready to go. Because it kills me to think she might have been scared about dying near the end but didn’t tell us.

I started this post about sleep. This lack of sleep along with the grief is leaving me in what I would call a fog. Concentrating on anything for longer than a few minutes is impossible. I get distracted so easily but usually not by anything, I just end up staring into space. I am extremely forgetful and am having trouble just getting through routine tasks from start to finish. I find myself frequently losing my train of thought when in conversation. I wasn’t going to write today but I know if I don’t have something to do I will fall asleep and I am worried that a nap will make it even harder for me to sleep tonight. But maybe I should take sleep when I can.