How does a person with Asperger’s process death? Do we experience grief the same way that neuro-typical people do? These were my questions as I struggled to understand my personal grief when my niece died last October. In my last blog, Goodbye Small Fry, I talked about the death of my niece Vanessa. I shared the story of her loss so you could see what a profound loss it was. I wanted you to understand that it wasn’t a small loss to me. It was a deep, searing loss. My life is filled with memories of my nieces and my daughters together. I lost a piece of myself when she died.
After her death, I felt like my grief was somehow different than the rest of my family. Like a typical Aspie, I tried to research it. I googled Asperger’s and grief. I found almost nothing pertaining to ADULT grief. There were a few scattered articles on explaining death to your aspie child. I reached out to my Aspie community. Those who had experienced a loss were very supportive, but many of those who did not have a similar experience could not relate. They wanted to, but without any personal experience, it was difficult for them. I did not get upset. I understand all too well how it feels to not be able to ‘be there’ because you cannot understand – no matter how bad you want to.
When I removed “Asperger’s” from my Google search and just searched for grief and death, I saw an immediate pattern. Most of the results talked about Elisabeth Kübler-Ross’s five stages of mourning and grief. According to the web, these stages are universal: experienced by all people everywhere in the world. They can be experienced in any order and with varying levels of intensity. People grieving can go back and forth between stages as they work through them. Acceptance, the final stage, can take years to reach and some people may never reach it. Here are the five stages of grief:
It is said that one must experience all five of these stages in order to feel more peaceful about the loss they have experienced.
I can only speak from my own experience, but as a person with Asperger’s, I disagree.
As heartbroken as I was, I did not feel I experienced grief the same way as my neurotypical family members did. While my family members struggled with the first four stages of grief, I only struggled with one.
I had no denial. My niece’s sudden aneurysm left her brain dead. Connected to a respirator and different monitors, she appeared to be sleeping. The respirator made her lungs expand and collapse – it gave the impression she was breathing. Even though a piece of my heart wanted to believe that she was still “in there”, my brain knew she was gone. It would not allow my heart to fantasize that some day she might come back to us. She was gone. It was logical. There was no denying it.
I did not experience anger either. I watched as others felt angry at varying things, but I could not feel anger. Angry at what? There was nothing to be angry at. No one would have ever thought “aneurysm” in an otherwise healthy sixteen year old girl. To me, there was nothing/no one to be angry with.
I watched her mother and father bargaining. I listened to the “if only” statements. “If only we had..” “If only she had…” I could not feel the need to bargain because my logical brain understands we CANNOT go back in time. There is no do-over. There is nothing we could have done and there is nothing we can do now that will ever bring her back to us. There are no bargains to be made. All the “What ifs” in the world cannot change where we are now.
Depression, however, hit me like a brick wall. Overwhelming sadness consumed me. I felt immobilized by my sadness. Immobilized and confused. I cried for my niece. For the loss of her. For the loss of all of the things she will never do. For the future she will never have. For the memories she will never make. My heart broke for her.
I felt like every ounce of my energy was poured into processing the depression I was feeling. I am not in any way minimizing my family’s grief, but at times I wished I could feel denial, bargaining, or anger – anything but this crushing depression and sadness. In my head I imagined we were all given a “pitcher” of grief. Where they had four glasses to pour their grief into, I only had the one and I couldn’t stop it from overflowing.
For individuals with Asperger’s, I believe there is another facet of grief that we feel. A facet that maybe only we are capable of feeling – Internal Conflict. Aspies are logic based. In almost all instances in our lives, logic automatically overrides emotion. The brain prevails over the heart almost every time and the heart stays quiet. (I realize the “heart” doesn’t actually control our emotions, but for the rest of this blog, I am going to refer to the part of the brain that controls emotions as the heart.)
As I was trying to process the loss of my niece, I realized that for the first time in my life, my logical brain and my emotional heart were at war with each other. I could not function. Logic failed me here.
My heart wept. It did not try to reason. It just hurt. I felt like there was an elephant sitting on my chest. I couldn’t breathe. I didn’t want to move. Everything was a reminder that she was gone and that fact was too much for my heart to bear.
My brain, on the other hand, argued non-stop:
“You believe she is in Heaven. Why are you sad for her? Isn’t Heaven a better place than here?”
“Would you want people to be sad for you if you were in Heaven?”
“You believe you will go to Heaven some day, so you will see her again. This isn’t goodbye. It’s goodbye for now.”
“If she were on an extended vacation and could not see or talk to you – would be you sad for her? No. You would be excited for her so why are you sad now?”
Of course, my brain was right. All of these things were true, yet I was stuck in this looping cycle between my brain and my heart. Logically there was no reason to be sad. Heaven is better than Earth. Logically it made sense. So why did I hurt so badly?
This loop of brain vs. heart vs. brain vs. heart continued because I could not stop hurting no matter how logically I tried to process it.
It was maddening. For the first time in forever, my heart trumped my brain. I was at a loss. I did not know what to do with myself.
I talked with a counselor who explained. “You aren’t grieving for HER. You are grieving for YOU. For YOUR loss.”
That had never occurred to me. Why hadn’t that occurred to me? It wasn’t the loss of HER future memories I was grieving, but mine. It wasn’t the things SHE would never do, but the things *I* would never do with her. I had spent the days after her death helping and planning and doing for others. These are things I am good at. For some unknown reason, I needed permission to grieve. Permission to think of me during this time. Permission to put logic on the back burner.
I still struggle with grief. I still attempt to understand why I grieve. It isn’t logical, but like I said, the heart trumps the brain on this one. The tears come and there is no amount of thinking that can stop them. I’m not sure if that is the final stage of grief: acceptance. If it isn’t, I’m not sure I will ever find it.
I’m still coping with her loss. The first of every month is the anniversary of her death. I used to feel that it was one month further away from her. Further away from the last time I saw her face. Further away from the last time I heard her laugh. Further.
I don’t think of it that way anymore. That was my heart’s way of thinking.
I still prefer logic. And logic tells me that every month is one month closer to her because even for me, death is inevitable.
If you are struggling with grief and this blog has touched your heart in any way, leave a comment. It’s nice to know there is someone out there. ❤