Identity Crisis: Grieving The Old Me

Hi, My Name Is Emily…

And I don’t know how to finish that sentence.

It used to be very easy for me. I was really proud of what I had accomplished in life, and had no problem spitting out my resume for an introduction. Even participating in a quick greeting on the street.

There was a period of time where I confidently introduced myself as Emily, the physical therapist who was compassionate, loved to travel, lived in Austin for a stent, loved my neighborhood, and admired my family. I traded all of that to gladly be known solely as, “Renee’s mom” and I would be completely devoted to that title. No need to know my name, just know I am Renee’s mom.

Make Up A New Life? Or Lie About My Old One?

I have been putting myself in many vulnerable situations and going out of my comfort zone more recently.

I will never forget the gut wrenching feeling when Chance and I ventured out and decided to take a pasta making class where we knew NO ONE. It sounded like a nice date night, but it quickly drew us back to reality! This class was amazing, but it was very group oriented where you were forced to talk to those around you. Nothing wrong with that, right?

This was the first time we had ever done something publicly like this since Renee had passed away and our earthquake year. It was so difficult to answer the basic questions – What do you for work? Do you live around here? How long have you been married?

I mean every single answer could easily begin with “Well…” but we tried to just roll with the punches. We bent the truth and answered what we could to not make the entire night a drab, crying fest for everyone else.

Then came the MOST GUTWRENCHING of them all..

DO YOU HAVE ANY KIDS?

That question is such a double edge sword twisting as it is stabbing. The first thing I want to scream out is “YES!” I have the most amazing daughter in the world, her name is Renee and I can talk about her all night. BUT she died.

What ultimately happens is you just say no, but feel the wrath of guilt for letting Renee go dismissed and unnoticed. All any loss mom wants is for their child to be remembered.

Who Am I Now?

More recently, I had the opportunity to be a patient guest speaker to advocate for pulmonary hypertension. After the video presentation was finished, I asked Chance to critique me and he said “well you didn’t really introduce yourself.”

That is when I realized, well what am I supposed to say now? I feel like a fraud saying I am a physical therapist, because I can’t work and haven’t worked in 18 months. Even though I hold a Doctorate degree, several certifications, and graduated in the top percentage of my class.

I can’t say I’m a mom, because then we have to go down the rabbit hole of “well, she passed away,” and sometimes that opens a can of worms that cannot be closed.

I don’t travel as frequently anymore, because it is quite exhausting and again, I don’t work.

My age isn’t relevant and in my opinion it is not professional or necessary in certain circumstances.

I could say, “Hi, my name is Emily and I have lived with chronic illness my entire life. Oh, and by the way, I have a rare, life-threatening and incurable illness.” However, you have heard me preach before I do not let this illness define me and be the only thing people see in me. There is a time a place for that, but I don’t want to lead a complete stranger into the abyss.

The Cheat Sheet

I didn’t know how to address my circumstances when people would ask me the most basic small talk questions. It seems SO easy, but honestly it was SO hard.

I once made up an entirely different life for myself when making small talk with a nail technician. I was on my day off, just running errands, before I was meeting some friends later. That was a bend in the truth, but necessary to get through the appointment.

Then, I made the biggest mistake ever. I had a simple follow up test done with someone I didn’t even think remembered me. Well, she asked me how Renee was, because she was my shining light and an amazing soul, so I shared her story with everyone. I just said “oh, she is doing fine” thinking that would be the end of the conversation. Which is partly true, she is probably living her best life in Heaven, but I lead this lady on to believe that Renee was a one year old and as great as can be. Face palm. I don’t know why I did that, I just did. It just came out.

After this dreadful experience, I decided to create a cheat sheet of phrases. How I would answer people when they ask me the most BASIC of questions, that are actually really uncomfortable for me. What do you do for work? I am a physical therapist, but I am on medical leave right now. What do you like to do for fun? Absolutely nothing, I lost every hobby I had. Kidding…I like to cook and learn new recipes. You get the picture…

You don’t owe anyone anything, just say what feels comfortable even if it is a white lie to get you through the conversation. Just don’t go as far as I did and make up a whole life for your dead daughter…

Grieving My Purpose

Every single piece of my being was shattered. I wish I was kidding. Everything that brought me joy and gave me purpose was stripped from me and thrown into a burning fire.

I mean how do you start over after that? Where do you even begin?

I had lost all purpose and meaning to my life. Not only was I grieving my daughter, but every single quality that made me who I was. Maybe people on the outside looking in wouldn’t say that, but for me, that is exactly how I felt. I was a washed up and used wet rag, sitting in the darkest corner. I didn’t know how I was going to become fresh and find a purpose again.

Out With The Old, In With The New – Not That I Asked For It

I took to social media searching for people who so bravely shared their stories of grief, especially parents. I didn’t want to believe it, but it was so true. When your child dies, or any loved one for that matter, a piece of you dies with them.

It took me a long time to come to terms with the fact that I will never be that same Emily again. I still struggle with accepting this reality. There will forever be a dark shadow and a deep longing in my heart at every new turn. I felt stuck, suffocating as I watched the world around me continue to move on as if nothing had ever happened. How could I even think about moving forward when a piece of me will forever be left behind in the cold, dark ground?

Sorry that is so dark, but it is the reality of my life. There are brief moments of joy and happiness, but there are also moments of overwhelming and nauseating grief that makes you question reality.

How Do You Start Over?

That my friends, is a trick question. You can’t possibly start over. You want to actually go backwards and never take another step forward ever again.

I wish I had the answers and could give you all of the amazing advice in the world. People always say, “you just have to take one day at a time” and sadly that is so true. Don’t set any expectations for yourself OR others. Give yourself boundaries. Give yourself permission to cry, self-loathe, and flat out scream if you need to. Life isn’t fair. And to be honest, it is not always what it seems, so definitely don’t compare yourself to anyone else.

I’m still learning, and I’m still healing. Looking back, I didn’t think I’d land where I am now.

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A post shared by Emily | Sjogren’s Warrior | PHighter | FSGS (@healmewholeheartedly)

Finding Patience

I was so used to going all of the time, it was really difficult for me to just come to a complete stop. I told myself I had to do something and it had to be productive. Frantically, I was always looking for the next chore or task to complete. Why? Because I was desperate to find some kind of purpose for my life.

I tried crafts, cooking, and even blogging. Fortunately for me, my grief turned into a driven passion. I wanted to make sure everyone knew what pulmonary hypertension was before it uprooted their life as it did mine.

I hope you never find yourself in a situation where you feel you lost your purpose and meaning in life. If you do, I believe you and I know it sucks. There is no nice way to put it. Unfortunately, it is an incredibly difficult road, but please allow yourself patience and time. Easier said than done.