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
Rachel, I can relate to what you write. (Am I becoming a broken record here?
) I’ve also had losses I didn’t respond to appropriately (which is how it felt to me at the time, not necessarily what I think of my response now). Related to that is my tragically unhelpful habit of smiling when I’m having an argument or revealing something very deeply upsetting to me. I remember having to explain to my husband in one of our first arguments, “Look, I’m going to end up smiling at some point during this conversation, but not because there’s anything funny or I’m laughing at you. I smile because I’m very uncomfortable and this is very hard for me.” Fortunately, he took me at my word.
About your break with your parents…I’m dumbstruck again at how similar we are. I skipped over that post the first time I read through your blog in its entirety, but went back to read it after reading this one. I cut off communication with my mother four years ago, after I finally became aware how hostile she was to me. It had been staring me in the face for years, but I kept finding a box to put it in. Then she did something I couldn’t place anywhere other than “this person really, really hates me.” Talk about shock. She was a great mother when I was growing up, but somewhere in the transition to adulthood (and unbeknownst to me), she started seeing me as some kind of enemy.
Sometimes I cry a river about it, so sad that my mother abandoned me like that, asking myself over and over, “what did I do that my own mother, who’s supposed to love me more than life itself, could hate me?” But I know it isn’t me. Something in her is broken. And mostly, I realize that we don’t get to pick our parents, and I’m grateful that she was such a good mother when I was little, and I’m okay with cutting her out of my life. It was the right thing to do.
I still have occasional contact with my father, but that is tainted by the fact that he “goes with the flow.” I feel like he loves me and understands how crazy my mother is….but he’s still with her, and if I were drowning in a river and she were standing next to him shouting “Don’t fish her out!”, he wouldn’t. So he loves me, but yeah….what’s it worth?
My sister, with whom I had a good relationship, has swallowed my mother’s insanity hook, line, and sinker, and I have no contact with her, either (though there’s never been a definitive break). I just have no desire to be in touch with her when she, after all the years she’s known me, all our time together, can believe the lies my mother has fabricated about me.
Wow, Saja, it’s amazing how similar our stories are! I just can’t get over it.
And don’t worry about sounding like a broken record. These days, it seems like every comment I leave on an AS blog starts with a variation of “I can really relate to what you’re saying.”
Wow Rachel. That post really moved me. I can understand exactly where you’re coming from with this. Sometimes I grieve over the smallest things and sometimes I can’t grieve at all over “earth-shattering” news.
Grief is an important part of life. Without it, we bottle things up and can’t move on.
Everyone has different reactions to news but aspie reactions are different again. There’s no doubt in my mind that we are some of the most emotional individuals on the planet and it stuns me whenever someone suggests that we’re incapable.
Hello, and thank you for your touchingly personal post. I just discovered your ‘blog tonight and I am so comforted by the fact that I can relate to you instantly. I especially love your eloquent closing paragraphs framing Asperger’s in a positive light, urging NTs to have more empathy for our point of view. (Ironically, they think that we are the ones who have problems with empathy!) When I read, “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”, my own heart hurt. I feel this pain every minute of every day and it is an aching, relentless, deeply lonely, hungry kind of pain. I used to be so naive and trusting of people, but now I have become bitter, grouchy, and cynical. In some of my less guarded moments I realize that all I ever wanted was to be loved and understood, but I never felt that anyone truly did. I carry this grief with me everywhere, and there is no relief for it – except, perhaps, by reading ‘blogs like yours.
Moksha – you say it so well.
Sometimes I overreact, and sometimes I underreact to loss and other things. And despite the diagnosis, I still wish I could be “appropriate” at all times. People sharing here helps me understand.
Sometimes I despair of the NT idea that NT’ers represent true empathy- and that Aspies can learn empathy by seeing the example of NT’s in action. Let me give an example:
In my daughter’s school, they have a tradition. If a kid has a new item of clothing the teacher organises a parade, and the child walks past the other children asking: “do you like it?”
My 5 year old was “observed” in school by an educational psychologist, and the latter related/noted an incident where my daughter raised her hand, in order to eagerly say that she had a new dress on.
As she walked past, asking if the other children liked it, lots of children said “no.”
The psychologist noted that the teacher didn’t address this. It made me sad to think that my daughter might be regarded as someone to be mean to, by the rest of her class, and that the teacher might collude with them. I brought it up with the teacher, but she just defended herself.
She said that children should be allowed to voice their opinions.
She didn’t seem to understand that people should reflect on their actions, and wonder how what they do/say might affect others. That there might be nicer ways to express that opinion. That maybe the whole tradition might not be an appropriate one for school.
I remember thinking “if my children get an Aspie diagnosis THIS would be a rotten place to learn empathy, and they say children can learn so much from their peers!” I thought about how the ‘social’ world of NT’s can be a really horrible place, to learn what society expects.
Is THIS the NT world which everyone should aspire to?
Contrast this with my 8 year old who confided to her father in a specific situation ” I was offered the orange one, and even though I liked the other one, I accepted it because I didn’t want to hurt his feelings.”
The same 8 year old was said to have a problem with empathy, and just one incident was cited. An incident where lack of empathy is not the logical conclusion, but a highly subjective one.
I know that I sound angry. And I am. It is just so unjust- the whole lack of empathy thing. The sooner that NT people, with the power to do so, re-write that, the better.
Grief is a very individual thing. Peoples emotions are, in general, very individual/subjective.
One person finds an unfortunate situation slapstick, another finds it sad.
As an NT’er, I know that I am only really aware, for example, of how much love I have for people until circumstances force me to.
When my mum died, I realised for the first time how very much I loved her. Before that I didn’t need to think about it. I took her presence for granted.
I don’t know if Aspies are any different. I don’t know if there are generalisations on that score between Aspies and non-Aspies. But what I witness with my family is the opposite of what I have just described. Perhaps that’s the reasons why Aspies have a reputation for being loyal.
Jennifer, that ritual at your daughter’s school is awful! Where do people come up with these kinds of ideas? It’s a set-up for bullying. And the children have to be allowed to voice their opinions? Maybe about global warming or poverty, but not about each other’s clothes, for goodness sake!
Your eight-year-old’s generosity reminded me of a scene from “The Joy Luck Club.” The main character thinks that her mother favors her much flashier cousin and can’t see her own daughter clearly. In one scene, she and her mother are washing the dishes after a big family dinner, and she’s very upset with her mother. She keeps saying, “You can’t see me. You can’t see me.” In response, her mother says to her, “I see you. Your cousin took best quality crab. You took worst quality crab. That’s because you have best quality heart. Can’t learn. Must be born with.”
It makes me cry every time.
Even the observor found it odd; I coltell by the way she described it. She also found it odd about the way that the teacher handled it, but the observor didn’t make an out-right criticism but it was there.
I’ll have to look at that film sometime, it sounds like one I’d really appreciate.
I’ve been realising that my children are probably like the kids that I noticed at school, the ones that stood out as being not the same. The ones you knew would be teased.
I don’t see them that way, but I’m their mum so I probably wouldn’t notice it ever. What I do remember is that I never teased those kids or behaved differently with them. I don’t understand why people whould expend energy for such nastiness.
It sort of makes sense that I would date the man who is my husband, despite that he had an awkward gait etc. By the time I was an adult I had stopped noticing that sort of difference. It was other people who kept pointing those things out. I could see what really mattered- the essential sweet soul of the man. I’m glad that I have that sort of blindness.
Jennifer, I don’t think you have any blindness on this one. In fact, I think that you see things very clearly!
I made my mother in law cry the other day when I told her that my hubbie is the most sensitive, kind & loving “non emotional” person I have ever met. Phooey on anyone who believes an Aspie is lacking emotion. You don’t lack emotion, you just experience it differently than an NT. I wake up in the middle of the night sometimes to find my husband running his fingers through my hair or patting my back. I wonder (sarcastically). . If Aspie’s have no emotion, what would be his motivation to display that type of affection? NT’s are the worst at adapting and expect everyone to react and do things just like them. As I have said before, you are all great and I remain in awe.
I think what happens with NTs is what happens with any majority. Most of the people in any majority consider themselves normal, which means that everyone else is some version of strange.
When I was in grad school, I had a conversation with a fellow student who was very intelligent, Harvard-educated, white, Anglo-Saxon, and male. I was talking with him about how, as a woman and as a Jew, I find myself on the boundaries of the larger culture, and that I’ve never had the opportunity to feel myself in the center of it. I asked him whether he understood what I was feeling. His response? “I don’t understand what you’re feeling, because I don’t have to.”
I learned a few things in graduate school that weren’t in the course listings.
At least your fellow grad student was honest.
Jennifer – that is the most hideous ritual. It’s an open invitation for cruelty, and what on earth is it designed to accomplish? Who cares if someone likes or doesn’t like another person’s new clothes? The only reason to institute a ritual like this is to teach children how to be honest with grace and compassion, or at the very least, to adhere to the old “if you can’t say something nice….” Brrrrr. And grrrrrr.
Jennifer G – the whole “no emotion,” “no empathy” thing is a total misunderstanding. It’s a theory some NT person put forward to explain why the general population doesn’t get the usual vibe from an Aspie, and why we say honest things even if the other person doesn’t like them: why, we have no empathy! It can’t possibly be that we value honesty above ego-stroking, and have enough respect for our peers to treat them as we would like to be treated.
Thanks so much to all of you. I recently spent time with my nephew after the death of his mother…I haven’t spent very much time with him in his life but when we are together I always feel a very special connection on some level with him. After my recent visit, I was left with questions with regards to emotional reactions in situations of such a loss. As I wasn’t seeing any obvious emotional reaction from him, I was suspicious that perhaps Asberger’s had something to do with this and feel relieved to have found this blog that allowed me to become more educated on the topic. All of your sharing has given me a much greater understanding!
WOW – thanks for sharing this!
I thought I was the only one (I even saw/felt the her ghost; sometimes I still do).
She’s been dead for 23 years and I can’t stop feeling love for her even though I found new love, married, etc.
I’ve always known I was different from most people. I just recently confirmed that I have Aspergers Syndrone; knowing what it is doesn’t help that much though. I spent 23 years wrapped in overpowering grief and almost 100% non emotional until recently (story here: http://alwaysloved.org – maybe you’d like to share them with the world?); now I’m like a raw nerve emotionally. I don’t just recognize other people’s pain I FEEL their pain as if it’s my own … it’s a bit overwhelming.
The whole Aspie thing explains why I study people like Jane Goodall studied the Guerrillas in the Myst trying to figure out the ‘rules’ for being social.
Anyway, beautiful blog post – THANK YOU for sharing.
JD
It is hard when NT’s jump to conclusions about Aspies having a lack of empathy. I often wish they would ask us what goes on in sad situations or when others are hurting in our minds before writing their comments. I was thrilled when I read the intense world theory. The article talked about how we can’t stand being in crowds as an example of how we can’t process all the energy in the room, but we feel it and it is overwhelming. I recently found out my grandmother who I love dearly can no longer remember who I am due to alzheimers. I have been going through a lot of stuff, so I haven’t cried over that fact yet. If I took in the memories of my grandmother and that fact, I might start balling. I feel my own pain just as intensly as other peoples. We internalize a lot of stuff and people don’t always see it because we don’t know how to put what we feel into words, than it comes in a big wave because we can’t hold it in anymore and those close to us don’t know what hit them. We hurt for ourselves and for others, but it is like having a screen in front of us and our emotions are behind the screen. It is like the screen is tinted so it is hard to see behind. If only people could know just how much we really cared and know how how much we really thought about them, or just ask about it, there would be less assumptions and less inaccurate portrayals of us.