I am entitled to my grief.

by Julie Knaak
(Moline, IL)


(this was written 2 months after my younger brother's passing. Shawn was 24 years old and battled Acute Lymphoblastic Leukemia and T-cell type Lymphoma for a very short 8 months.)

I've been writing and re-writing this entry for quite a while in my head. There have been so many things that I've been thinking about lately, always added to by reading books. I've recently read a few books on losing a sibling. It's brought up something that I really feel is important for people to think about.

"Disenfranchised Grief" or "Ambiguous Loss".

Someone talking to a person who has recently lost their sibling immediately asks how their parents are doing instead of asking them how they are dealing with emotions. That sibling's feelings are invalidated, ignored. It's not a selfish thing here- it's a feeling that the parents must have a much greater amount of grief than the sibling has.

When you think about it, your siblings and you have a most unique relationship- one that you assume will always be a constant in your life. People assume that they will outlive their parents but never their sibling. Siblings are also supposed to be a source of competition or rivalry, right? As two therapists studying sibling loss put it, "We had been taught in school that siblings are, at best, minor actors on the stage of human development, that their influence is supposed to be fleeting, and that it is the parents who principally determine one's identity." None of this was the case with our family. Matt, Shawn, my parents are I were all extremely close. We didn't fight- it's not worth it. It's not like we didn't get annoyed with each other, because we definitely did. We just accepted that this is how our family was and what our family members were like and adjusted to it. Matt was always independent, I was always social, and Shawn was always happy. We were a well oiled machine- a unit that just "worked". A life without Shawn in it just doesn't feel right because my earliest memories all include him.

This then goes into family dynamics. I will always answer that I am the middle child and that I have 2 brothers, but I dread the answering of this question. What do you say? Do you really want to explain to every person what had happened?

By the way, disenfranchised grief is not just about siblings. It's also about best friends, grandparents, aunts and uncles, cousins. It's the thought that, somehow, you are not entitled to grieve as much as you are. What a load of poo. We are all allowed to grieve, and to grieve differently.

I loved the perfect way our family was set up. I always described, with pride, how we were all special. Matt, being the first child, was treasured. I was the first girl, which was also special. Shawn, was the baby and rightly spoiled. I hate that this has now changed.

I have changed a lot since Shawn's illness was first discovered. It's giving me this strange feeling that I am disappointing people with how different I am. I am so much more quiet now and overwhelmed very easily. I feel like everyone is wondering why I'm still having such a hard time. My heart races pretty frequently still and its very hard to calm it down. I still audibly sob, as if the deep sounds coming from the depth of my belly will help relieve the pain somehow. I'm withdrawing more now because of all of these things combined. I have a very strong need to get away- to go away for a day or two with my thoughts and not have to worry about anything else. I've already taken so much time away from work while Shawn was ill and right afterwards, how can I ask for more time?

I am very unsure of myself today. I've had a long, drawn out dialogue with myself all day long. I can't stop my thoughts. As a sidenote: last week, I did incredibly well. I still thought about Shawn all of the time, but I felt so in control of my feelings. This week has been a different story.

To sum it all up: I miss him terribly. I can't believe that this has happened to my family. I look around at my family members and everyone is hiding grief under smiles.

I don't know how to end this string of thoughts eloquently, I apologize.

Love you Shawn, Always and forever.
Julie, forever Shawn's sister

Comments for I am entitled to my grief.

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Sep 09, 2011
sorry about your loss
by: Anonymous

I am so sorry about your loss .I know how you feel , I have been there , hang in tight this too shall pass.
k

Sep 05, 2011
Your post ....
by: Anonymous

I read your post and cried it was like i was reliving the loss of my son. Seems we all go through the same motions while the battle for life is happening then next .... Then you find out it is terminal... Then you try to let your love one know how much you love them... Comfort them... And watch their last breath. Then life changes forever. I hate cancer, I hate there is not a cure, I hate that we can go to the moon, mars and wars that take lifes but we can not find a cure for cancer. May the road you choose to travel embace you and ease the loss you endured.

Sep 02, 2011
another sister
by: Anonymous

Julie...your grief is very valid and you have every right to express it as you need to. I lost my baby sister when she was 5 and I was 20. She was my sweetheart and I adored her. Her name too was Shawn. Shawn Marie. She was 3 when I had my oldest daughter and I named my daughter Melissa Shawn after my baby sis. When that drunk driver took her from us I went into deep grief. I didn't live near my family so it was just me and my daughter. It took 3 years before I could even say her name without bawling. Fast forward 34 years later....now I have lost a son. He died of AML last August. It's been a year and the grief is so raw still. I have some coping skills because of the experience I had with my sister. I know already that the only people who understand are the ones who have "been there, done that". I know that others will expect you to "get over it" after a period of time. I know the craving for isolation in order to lick your wounds and to heal. I know the impatience with STUPID people who don't have a clue.....I know and still I hurt....it's a process and eventually you get through it but you will never be the same person you were before it happened. Never....and that's sad too....Sending lots of hugs to you and prayers that your pain goes into remission soon.
Shirley from California

Sep 02, 2011
Yes you are...
by:

Julie,

I am so glad that you decided to share your story and feelings here. It is a safe place to do so. I still miss My Love, always will. But I can recall how people asked how did he die? As though they were asking what type of milk I prefer.

People really do not know what to say and often put their foot in their mouth, The whole foot. The words that come out of peoples mouths where grief is concerned would leave me standing there with my mouth open. Did they actually just say that?

There was a lot of anger where that was concerned. Later I was angered that I was not supposed to grieve past the 3 month mark. You will hear terms that cut to the core of your soul like..."life goes on..."

So in essence, do not let anyone tell you how to grieve EVER! Know that unless you have gone through grief you have no idea how it completely twists our lives around and makes us a different person. Those who have gone through or are going through grief will never be the same. Things will never be the same.

In healing, making our way through grief we realize eventually that it is us and them as though we are a completely different species of human beings. Because until you have experienced the many forms of grief, you can not understand.
So, forgive them, they know not what they do...
HH

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