Journeys with Autism Reports from Life on the Spectrum
  • Mar
    4

    Autism, Illusion, and the Power of Despair

    In this month’s issue of The Sun magazine, I found the following quote by Philip Slater:

    “Despair is the only cure for illusion. Without despair, we cannot transfer our allegiance to reality—it is a kind of mourning period for our fantasies. Some people do not survive this despair, but no major change within a person can occur without it.”

    Those were the perfect words for me to find at this particular moment of my life. I’ll try to explain why.

    After I wrote my post about self-worth, I noticed myself living with the emptiness inside, and I saw that it wasn’t going kill me. In fact, I felt like a great burden had been lifted from my shoulders. All my life, I’d struggled with improving my sense of self-worth, and now I felt nothing but relief that I didn’t have to struggle anymore. I could stop going to war about it. I could move on. Or better yet, I could just sit still.

    One evening, as I sat knitting, I found myself thinking, “Okay, so I feel no self-worth. I feel empty. Yup. Empty. It’s weird. It’s sad. It’s… Hey, this hat is really coming out well…” I was just sitting there with the homespun yarn in my hands, watching myself knit around and around on circular needles, thinking about Bob spinning the yarn, appreciating the fact that the lanolin was healing the cracked skin on my fingers, and not having the pressure to do or be anything in particular. After all, I was empty of worth. What could I possibly do of any importance? Such freedom!

    And then, it came to me: The empty place inside is where my parents’ love should have been. I felt no self-worth because I had never felt any love from them. And then I thought about the sexual abuse and the despair I felt when it started. I was eleven, and that was the day that I started to lose my family forever. That man who abused me was not the same man who had thrown baseballs to me in the backyard. He was not my father. It was as though my father had died, and some other man who looked like him, and talked like him, had taken his place. My mother would never have believed me, and so she was gone, too. My brother was only eight. I wasn’t going to tell him. How could I? I didn’t even have words for it. In that moment, everyone was gone, and I was alone.

    Since then, not one of my relatives has expressed any love, any compassion, or any concern for me. Quite the contrary, in fact. And all these years and years of losing people started one night when I was eleven, and somehow, I knew it back then. I sensed what it meant for my life. And I was right.

    I accept these losses now, but sometimes, they make me very sad. My friend Ben said that it’s okay to be sad about it all. How could I not be sad? Bob has said many times that the emotion I express most is sadness. Of course it is. How many people have I lost over the course of my life? I can’t even keep count of them all.

    And then there was the despair of watching my dreams for my life drift away as my disabilities became more and more apparent. As much as I love the gifts of my autism, I’ve had to grieve for that person I thought I was, and at times, the grief has filled me with despair so deep that I didn’t know whether I’d ever be able to climb out of it.

    Last week, I talked these feelings over with the doctor who manages my medication. I see him once a month for an hour. As I described what I was going through, he said that my grieving seemed to be going well. He said you know that your grieving is going well when the sadness wells up inside and you start to cry, and then at some point, you notice that you’re thinking about getting a pizza, or that you’re remembering an afternoon with your best friend when you were ten. You grieve, and you leave room for other things to enter. And then he leaned forward and said, “I’m going to tell you a secret. The grieving never ends. You just learn to carry it differently. Nobody wants to admit it, but it’s true.”

    Another piece of relief, of a burden being lifted. You mean, I don’t have to resolve this grief? You mean, I don’t have to go to war against it? You mean, I don’t have to feel like an utter failure because I feel sad? How utterly fantastic is THAT?

    After all, life is predicated on loss. Life ends. Jobs end. Friendships end. We end. Everything is fragile and finite. Broken-heartedness is one response to all of it. It’s my response to all of it. I’ve been broken hearted all my life. I live in a culture in which we’re always supposed to be happy and comfortable and thinking positively, while at the same time I’ve a) been assaulted by the very people who were supposed to love and protect me, b) had my senses assaulted by the world around me, and c) had my mind and heart assaulted by the madness of the world. I can’t even read a newspaper anymore. The so-called “healthcare debate” drives me crazy. How can adults in the richest country in the world not agree on how to provide universal healthcare? How can they be so arrogant and so unbearably stupid? How can they strut and accuse and lie and play politics with people’s lives?

    It takes a spiritual warrior to be broken hearted in a culture like this one.

    In the midst of all these layers of sadness and despair, I’ve been burning away the illusions of who I was supposed to be. I was supposed to be able to do anything I wanted. And what were all of these nebulous, terribly important things waiting for me in my future? I don’t even know. They were someone else’s illusions, I suppose. I just took them on. Now the illusions are gone, and I can feel the relief of being exactly who I am. I walk around town in a big old headset, communicate with people in writing, don’t make much eye contact, and that’s who I am—right now, right here, at this very moment.

    The rest is either a dream of who I was supposed to be, or the memory of who I no longer am. I was once the mother of a small child, but no more. I was once married to her father, but no more. Bob and I once led services together, but no more. I used to work full-time, but no more.

    If I keep living in what’s past, I’m living in a world of illusion, and my whole life has been about truth, about speaking the truth to my family, about dealing with the consequences, about never being able to do anything other than say what’s real, despite the fact that it rarely gets me what I want—compassion, support, friendship. But it’s who I am, and I love that it’s who I am. My whole life has been about trying to see things as they really are, and about trying to speak about them as they really are. And somehow, the despair I’ve felt has burned through layers and layers of illusion, and left me with the time and the willingness to look at the truth of my life.

    At times, I’ve been afraid that my despair would swallow me alive. Some people don’t survive despair. I’ve wondered at times whether I would survive it. But then I remember that I have a fierceness inside me, like an unquenchable flame. Somehow, the despair has taken my fierceness and used it burn through so many illusions that I am left empty and can begin to live.

    © 2010 by Rachel Cohen-Rottenberg

    8 Comments

8 Responses to “Autism, Illusion, and the Power of Despair”

  1. this is inspiring and healing for me… i am blessed by your thoughts… indeed, it takes a warrior to carry a broken heart in this world of instant fixes… i have mused on this before, about how the brave are those who fear… and those who do not fear are just in denial or have lost lucidity of mind… then they cannot be called brave, can they?… thanks rachel… your insights are brave, deep and resonant…

  2. I mourned the “Norman Rockwell” family, too, for many years… Once I figured out no one really has that despite the show they put on, I felt better.

    You didn’t “loose” your family, Rachel, they lost you! They turned their backs on you. It’s their loss that is so tragic.

    ” I live in a culture in which we’re always supposed to be happy and comfortable and thinking positively,” That’s what they want us to believe. I don’t think very many people, NT or not actually feel that way. We literal minded folk just believed it!!!!! And mourn that we don’t have it. I really think, for the most part, the rest of them are faking it, too, only they don’t even know it. Which is even sadder than us believing they had it.

    And begin again, my friend, you shall! Trust me on this one…I’m doing it and it does work.

  3. there seems to be an enormous cultural opposition to allowing ourselves to fear, to feel bad, sad, despondent or despair. maybe they wouldn’t be so crippling if they weren’t prohibited?
    i share a similar experience in taking years and time and energy learning how to allow myself to feel what i’m feeling, not in an indulgent, navel-gazing narcissism, but just to feel without judgement, so i can figure out what i am, how i feel and what the hell i want to do next!
    brava.

  4. John Dale Lyons

    It sounds to me like you had a moment of Zen enlightenment. Sometimes a void can be a place of tranquility. A very moving piece.

  5. Elizabeth Aucoin

    Your piece made me think about one of my favourite quotes. “Broken hearts belong to God.”

  6. Thank you all for your words of kindness and support.

    Elizabeth’s quote brings to mind a similar one from my tradition: “The only whole heart is a broken one.” In fact, in this month’s hospice newsletter, I just happened upon a passage that cites it:

    “A great religious tradition does not deny the pain of loss. In the words of the Kotzker Rebbe, ‘The only whole heart is a broken one.’ No awake spirit can move through this world without enduring a broken heart. There is nothing real that makes life painless. Accepting the pain of living, knowing one’s heart will–and should–be broken, is the beginning of wisdom.”

    – from David Wolpe’s “Making Loss Matter: Creating Meaning in Difficult Times”

  7. this is it. this is what i’ve been fighting. maybe it’s time to let go, just let it be. it’s sort of a paradox, i think, as i read your post. inside the letting-it-be isn’t an unquenchable “i can” (which is what i think my chant should be..) it’s an unquenchable “i am.” it seems so much more essential, and so much less a struggle.

  8. Bluedancer, I think you’ve got it. Everyone who lives long enough finds that they can no longer do what they used to do, so if you base your sense of worth on what you can do, that sense of worth is going to diminish.

    I’m realizing that all I brought into the world was who I am, and that’s all I’ll be able to take with me when I go, so I’d better start getting acquainted with just being. :-)

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About Me

I'm Rachel Cohen-Rottenberg, and I publish this blog, Journeys with Autism. I'm a wife, mother, writer, singer, artist, photographer, community volunteer, and the chapter leader for the Vermont Chapter of the Autistic Self Advocacy Network (ASAN).


At the age of 50, I awoke to my place on the autism spectrum and discovered a world of gifts, struggles, and life-changing possibilities. My latest book, The Uncharted Path: My Journey with Late-Diagnosed Autism, was published in July of 2010. My work has also appeared in Shift Journal of Alternatives: Neurodiversity and Social Change and in the Disability Rights and Neurodiversity section of the ASAN website.

My Memoir

"The Uncharted Path is an autism autobiography unlike any I’ve ever read.....I’d recommend The Uncharted Path to anyone on the spectrum, to anyone who has friends or relatives on the spectrum, and to anyone who cares for people on the spectrum. Her book is written straight from the heart.” —Gavin Bollard, author of Life with Asperger’s


“Cohen-Rottenberg is emotionally honest and skilled at relaying the stories from her childhood and adulthood that made her the person she is today....A highly recommended read."—Kate Goldfield, author of Common Scents: Adventures with Autism and Chemical Sensitivity


“What Rachel has written, few others would be able to....An enlightening journey."—Jon Gilbert, author of Same Child, Different Day


My memoir The Uncharted Path: My Journey with Late-Diagnosed Autism is now available in paperback for $17.95 and in PDF format for $8.95.


To purchase the book, please contact me by email. I accept payment via PayPal, by check, or by money order. You can also find the book for sale in paperback on Amazon.com.


Thank you for your interest in my work.


Rachel Cohen-Rottenberg
rachel@journeyswithautism.com

My Visual Art

Sojourning in the Visual World www.sojournerartist.com

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