I’ve always considered myself very peculiar in the ways that I deal with grief and loss. For the longest time, I couldn’t understand why some losses reduced me to tears immediately, while other losses left me nearly empty of feeling for years. Being diagnosed with Asperger’s has helped me to put my grief into a new framework. In this post, I’ll talk about some of the losses I’ve gone through, the ways I’ve handled them in the past, and the new understanding I am reaching about why I respond in the ways I do.
The Loss of My Grandparents
I was very close to my maternal grandparents, and over the course of my childhood, I saw them often. My grandfather had been a classical violinist, and he was very supportive of my being a musician. Along with my grandmother, he came to all of my recitals, and he loved to listen to me play the piano at home—except, of course, when I didn’t play well. Then, he would say things like “Mozart is turning over in his grave!” or “Stop banging on the keys!” I never felt at all irritated or intimidated by these comments. He was treating me like a peer, and I appreciated it.
In 1971, he was diagnosed with cancer and had an operation to remove a tumor the size of a tennis ball from one of his kidneys. He never really bounced back entirely, but he had a couple of very good years before the cancer re-appeared. By the end, the cancer had spread to his lungs and to his brain, and I was afraid to go and see him.
The night before he died, I finally visited him in the hospital. His condition was worse than anything I had imagined. His body was absolutely ravaged, and if I hadn’t known he was my grandfather, I might not have recognized him. When he saw me, he just cried and kept repeating that he wanted to die.
He passed away the next afternoon. I knew then, as I know now, that he was waiting to see me, and that he didn’t want to leave until he did.
My grandmother died a year and a half later, two days before my seventeenth birthday. She had been a generous, loving woman who had never spoken an unkind word to me. She used to come to our house on a regular basis with loaves of cinnamon-raisin bread, because she knew that we loved it. When I stayed at her house, she’d make me French toast with powdered sugar in the morning, and then she’d proceed to feed me every few hours, just to make sure I wasn’t going hungry.
One afternoon, she mopped her kitchen floor, lay down in her bed for a nap, and never woke up.
I didn’t cry for either of my grandparents when they died. I’m not sure that I even felt sad. I was trying desperately to locate my feelings, and I just couldn’t. At the time, I thought that something was very wrong with me. We had the funerals, we sat shiva, my mother was nearly inconsolable, and I felt like a ghost. When a friend at school offered her condolences, I realized that I ought to be feeling something, but I couldn’t figure out what it was.
It took me thirty years to cry for my grandparents. I was at a spiritual retreat, where we’d been asked to bring something of importance to us. I’d brought my grandmother’s brooch, which was the only possession of hers that I’d been given. During a healing ritual at the retreat, the floodgates opened, and I cried like I would never stop. It was both excruciating and cathartic, and I’m grateful that it happened.
A Friend’s Unexpected Death
In the middle of these two losses, a very brilliant and loving friend of mine committed suicide. In January of 1975, he took cyanide at the water fountain on the third floor of our high school. About a week later, the doctors took him off life support. He was 16.
At the time, all the adults said that his death was accidental—that he’d brought sugar to school to keep himself going, that he’d carried the cyanide with him for a science experiment, and that he’d gotten the two packets mixed up by mistake. I tried with all my heart to believe this story, but I never really did. Twenty years later, when I asked an old high school classmate whether she thought he had committed suicide, she said, “Yes, of course. I never believed that ridiculous story.”
That’s when I realized that I never had either. I’d always known. And I’d always felt incredibly guilty about his death. For one thing, in some part of my soul that I kept well hidden, I knew that my friend loved me. He’d walk over to my house late at night, just to see whether the light was still on in my room. He lived a good distance away, so I should have understood what was going on. But I was a silly teenager, giggling and dreaming about the boys that everyone thought were so cute, and I just didn’t want to deal with his feelings.
And then, there was the fact that the day before he took the poison, he’d wanted to talk with me. That nearly wrecked me. I remember the day very well, because there was an awful blizzard. Someone had offered me a ride home, which I very much wanted, because I hated having to wait for the bus in the freezing cold. As I was gathering my books together, someone else told me that my friend was on the fourth floor and really wanted to talk to me. I was so focused on getting the ride home, and so innocent of the possibility of what was about to happen, that I said, “I can’t right now. I’m getting a ride home. Tell him that I promise we can talk tomorrow.”
But there wasn’t any tomorrow.
There were hundreds of people at his funeral, and I cried my eyes out from start to finish. I just sat there, all hunched over, with my hands over my face, crying so hard that when I raised my head up for a brief moment, everything was a blur. After the funeral, as we walked outside, the sunlight reflecting off the snow felt like it was burning my eyes.
And then, a mutual friend had the gall to say, “Well, at least he’s in a better place now.” If I hadn’t been so exhausted, I’d have unleashed a torrent of outrage and grief at him. As it was, I just thought, “How the hell can anyone say that? How the hell can life just go on without him?”
The next day, I sat in our history class, the tears running down my face, while our teacher continued the lesson plan without so much as a word about the empty desk where my friend used to sit.
The Break from My Original Family
As I’ve discussed in a previous post, I broke off contact with my parents in 1991, when I was 33. In return, the rest of my family broke contact with me.
In 2001, I decided to sit shiva for my parents, my brother, and my extended family. They were still alive, but my relationship with them was gone, and I needed a ritual to help me grieve them. So, I took out my favorite photographs of each of them, and made little yizkor books—photo albums of remembrance. Then, each day, a different friend came over. We shared the photos, talked, and took a long walk together.
I had assumed that my grief over my parents would hit me like a tsunami, but it never did. My grief at losing my brother, however, was unutterably painful. We’d been best friends when we were kids. I missed our childhood. I missed the children we once were. I cried, and cried, and cried.
As painful as it was, it was very good for me. I was finally able to take out some childhood photos of us and put them up where I could see them.
My Parents’ Deaths
Each year on my birthday, I would be haunted by the specter of my parents. I did not know whether they were alive or dead, and it was becoming increasingly difficult to wonder. In 2005, around the time of my birthday, my daughter urged me to start looking for answers, and my husband concurred. I still wasn’t ready. But then, every night, for two weeks, I had terrible nightmares. I dreamt that I was in a tight, dark space with no air, no way to see anything, and no ability to move. Every morning, I woke up screaming. At the end of the two weeks, I woke up calling for my mother.
At that point, my husband said, “You need to find out what’s going on. Now.” So, I did an online search in the Social Security Death Index, and I learned that my mother had died in June of 2004. I want to say that I dissolved in tears, and that there was much guilt, and regret, and gnashing of teeth, but all I could feel was relief. For the first time in my life, I felt safe. That was it.
My father died in February of 2008, and I found out about his death in much the same way. In his case, I also felt relief—for both of us. I had had very brief contact with an uncle who told me that my father was dying of emphysema. I was not surprised by this news, since he’d been a heavy smoker almost all of his life, but the thought of him suffocating to death was awful. When I learned that he had died, I was relieved that his ordeal was over.
Reflections on Why I Grieve the Way I Do
Sometimes, my expressions of grief happen right away; at other times, they are very, very delayed. I’m not sure exactly how to account for these kinds of variations, but they seem to have a lot to do with the sensory component of being an Aspie.
Like most (all?) Aspies, I do a lot of sensory work every day, and it’s very hard for me to switch gears quickly from one kind of experience into another. Normal transitions are slow and difficult; why should the huge ones be any different, especially when they are emotionally overwhelming? As a diagnosed Aspie adult, living in a calm and loving household, I can make the transitions more quickly. I cry much more easily now than I ever have. But as a child with undiagnosed Asperger’s, I was just trying to keep body and soul together, and it was a full-time job.
When my grandparents died, I was living in a state of unabated sensory overload. My parents were both very overwhelming to my senses, and I was in a state of constant fear. In the midst of all this chaos, my grandparents were everything to me. If it hadn’t been for their unconditional love, I don’t know whether I’d have survived. So I couldn’t feel the loss when it happened. It would have been too devastating. I just kept putting one foot in front of the other until high school was over, and I dreamed of the day I could get as far away from my childhood as possible.
But I’ve never been able to outrun the sensory sensitivities. Because I experience the world very intensely, I’ve felt very apart from others my whole life. Because of this feeling, I’ve experienced life as a fairly regular series of losses, and sometimes, I just can’t handle another one. Every time that I realize that I’m not like others, that I don’t expect what others expect, that I can’t relate in the way others relate, that I can’t belong in the way others belong, my heart hurts, and I feel the loss. Every time. Like drops of water wearing away a stone, those small moments wear away at my heart. It’s been going on my whole life, whether I’ve perceived it or not, whether I’ve expressed it or not, and whether I’ve denied it or not.
And to make matters worse, I still read articles in which people express the mistaken assumption that people on the spectrum are devoid of feeling. Why do they judge our actions and feelings in the light of their own experiences? Why don’t they listen to how our apartness makes us feel? Why don’t they understand that the world comes rushing in at us, too loudly, too brightly, too quickly, and with more emotion than we can bear? Why don’t more people listen when we say that we have to find some way to get outside of the overload, to order it, to stand apart from it, just to be able to make sense of it at all?
As one of my email correspondents said, it’s because people have difficulty understanding and accepting difference. And I know they do. I just can’t understand why.
But I take great comfort in the words of Rabbi Menachem Mendel Morgensztern of Kotzk, who said, “The only whole heart is a broken one.” While others may refer to our neurology as a “disorder” from which we “suffer,” I know that our hearts and our minds are whole because of our life experiences, not despite them. It may take some time, but little by little, the rest of the world will know it, too.
© 2009 by Rachel Cohen-Rottenberg
