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Aug15
Waves of Grief
Filed under: Belonging, Communication, Community, Grieving, Loneliness, Marriage, Sensory Processing Issues;26 CommentsI feel like my life just bottomed out.
I’m not sure how it started. It seems to have coincided with a letter that Bob wrote to his daughter. I won’t go into details on it. It was a good, honest letter that spoke with love to her about her ongoing resistance to our marriage and to the choices that Bob has made for his life. In the course of reading it, I found out some more wonderful things that my stepdaughter has to say about me these days: that my autism is a “choice” I’m making, and that I’m using it to “hide.”
Like I don’t have enough self-esteem problems without hearing bullsh*t like that.
And then, there is the email my husband sent to all the people he was going to see in California. He got back a couple of supportive responses. Of course, because nothing can ever be easy, he also got a very judgmental response from a family member telling him that he’s dealing with the situation all wrong and that he’s disappointing people because of it.
I’ve been counseled not to listen to this kind of thing, but I really have to. I need to listen to how people are reacting because it’s hard on Bob, and he needs to be able to get support from me. The problem is that once I’m done listening and giving him support, I’ve got one more piece of fear and self-loathing to deal with. He knows it, and he tries to tell me that other people’s reactions aren’t about me. In my brain, I know it’s true, but my self-esteem meter ends up falling by several degrees every single time.
Ironically, what gets to me more than anything, is that none of this is about me. I wish it were. I wish it were personal, but it’s not. All of these responses, whether for good or for ill, are directed to Bob and not to me. The people who are supportive and the people who are disappointed are all asking Bob whether he’s taking care of himself in the face of my autism. I am glad that people care about him but, hey, excuse me everyone, I’m the one going through hell with the autism here. Why do these people think he had to cancel his trip? Anybody care to chime in and ask how I’m doing? I mean, people can be disappointed over whatever they want. Everyone gets to be human, and everyone gets their own feelings, but where’s the perspective here? I’m pretty goddamned disappointed with how disabled I am. Would anyone like to address this small fact? Didn’t think so.
The reason all this energy is directed to Bob and not to me is clear. He’s writing to his friends and his family. They aren’t my friends or my family. I have no family, and I still haven’t figured out how to have friends—not really. I have people who consider themselves my friends, but I still don’t know how to be with them and make space for myself. I feel like I’m always tagging along behind them. I haven’t the merest clue about how to talk to another human being, besides Bob, and not go into overload. How can I possibly connect with anyone face-to-face when my mind can’t keep up with the words coming in and can’t figure out how to come up with words in response? This is high-functioning autism? Why, because I only freak out in the privacy of my own home? I feel like I might as well stop talking altogether, wear my ear protection, and check out of anything that looks familiar to me, because everything familiar is just one more reminder of how completely screwed I am.
Last night, all of these feelings flooded over into waves of grief so intense that I could barely move. I was crying inconsolably for hours. Then, I woke up this morning and cried some more. I’m crying because it feels like God has played one giant series of very cruel jokes on me—that is, in those moments when I believe in God at all. Right now, I hate God with a passion. How could God have put me in this ridiculous body with this ridiculous neurology, put me into a family that abused and rejected me, given me gifts I can’t possibly use, given me a heart that I can’t put into action, and made me this silly little girl who just wants to love people and be loved in return and have everything be okay? Why is it never okay? Why did God give me so much hope when I was a girl? Why? Just to take it all away?
When I married Bob, all I really wanted was to have our little family—my kid and his kids. But now, his stepdaughter has nothing to do with me (despite all my attempts over the years to reach out and support her), his daughter absolutely hates me (despite all my attempts over the years to reach out and support her), and my daughter is so intimidated by Bob’s daughter that she hides in her room while she’s here. My daughter is anything but a fainting lily, so that’s really saying something. Bob’s son and I get along well, but because he lives in the house we used to live in, it’s very hard for me to go there and see him. Too many memories.
So much for my dream of a family.
As if all this weren’t enough, I realized last night that when my daughter goes to college, I won’t be able to visit her. She wants to go to school in California and traveling for me is impossible. So, I’ll see my daughter when she comes back to visit me, but I won’t get to see her life in action. Right now, I’m getting a taste of how it will be, because she’s been at camp for two weeks and she’s called me once. Even last year, she called me more, but this year, she’s too grown up for that. She’s having her life with her friends. I understand that. But it hurts. A lot.
Last night, when we sat down at our Shabbos table, I told Bob that I no longer want to chant any of the prayers we’ve chanted on Shabbos together since the day we met. I don’t believe in them anymore. I don’t believe in God anymore. The God who would play this many cruel jokes on me is no God at all. (And for anyone tempted to proselytize me right now, please don’t.)
While I was sitting at the table, I couldn’t even look at anything. Every single thing on the table seemed to mock me, because I remember buying it with optimism, with the hope of a happy life with friends, family, and community. Another joke. So I just sat there, unable to move. I told my husband I was sorry that I couldn’t chant the prayers anymore, and he said, “That’s all right. I’m going to light the candles tonight to honor our marriage and our commitment to each other. That’s what they symbolize tonight.” Of course, then I only cried more.
Ultimately, I just got tired out and ended up having some food before I fell asleep. I woke up in the middle of the night in a very weird mood. At first it was kind of nice, because it was emptied of everything. Then, I remembered my predicament, and the grief hit me again. Bob woke up and held me. He told me that it was okay to hate God, because it was better than hating myself, which is what I’ve been doing for as long as I can remember. He said that God can take it, but that I can’t. Maybe it’s true. I don’t know.
© 2009 by Rachel Cohen-Rottenberg
26 Responses to “Waves of Grief”
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I’m sorry to hear about you being so low. That is, I’m sorry it has to happen at all. But- I’m glad to have someone out there who can show me that my experience of autism is real, that my lows are real, and that my “weird needs’ are perfectly valid. I’m not “just” saying this to make you feel better. Every day I click on the link to your blog for your insight, honesty, and ability to analyze the crap psychologists like to write about us. Some days, like today, I’m doing well and can say “ah yes, this is what those bad days look like” and other days I’m feeling like the scum after a flood with just enough brainpower to say “here is hope.” I hope and pray things will turn around with your step-children. That stuff seems unimaginably difficult to bear.
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It’s hard to let go of our dreams and accept our reality. Going from the Norman Rockwell dreams to the reality of staying at home and considering the day a victory if we haven’t freaked out.
I don’t think it gets easier, just absorbed, and we do as we always do, just deal.
I have to believe there is something after this life….because if there isn’t I”m going to be really pissed. This isn’t fair, and if I choose to accept my disability believing it’s an overall universal learning experience, one of many through many lifetimes, I damn well want to learn the lessons I accepted to learn in this lifetime so I can move on to the next one as a well pampered house cat.
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misfit August 15th, 2009 at 9:12 am
(((((Rachel))))) -
Hi Rachel,
I’m sorry that circumstances are so bad and that you’re feeling so low. I wish I could offer help but this is truly one of the times when I’m lost for words. I hope things improve soon.
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Jean Marie August 15th, 2009 at 12:26 pm
{{{{Rachel}}}}
Change is always, always hard. Running into limits, hard. Grief, a normal response.
Remember to breathe your whole self.
Remember that you are strong though it may not feel that way right now.
Remember there are people (even us readers who are far away) who are on your side (even when I don’t know what I can do to help) and believing that ways will be found.
Peace
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Look for an e-mail from me.
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Bob’s right about God being able to take it. And if my very slender knowledge of the Psalms is correct, there’s quite a tradition of people hating God and shouting at Him. It’s called being human.
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Jennifer August 15th, 2009 at 4:05 pm
I wish that I could comfort you.
Just as Jean said, I am on your side, and I will pray that things will get better.
kol tuv -
my thoughts are with you.
i’m not always sure it helps to hear that, but i mean it. -
DonkeyBuster August 15th, 2009 at 7:40 pm
I’m having one of these spells myself… grief, depression, hatred of self and other, vague malaise, debilitating inertia… AS + midlife crisis + menopause + unresolved interpersonal issues…
Life’s a bitch…
then she has puppies.Grrrr… snap… snarl.
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I feel kind of the same way about many things but maybe not as intensely as you are now……. hope it passes soon. Kate
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John Dale Lyons August 15th, 2009 at 9:35 pm
I can only offer my deepest sympathy for what you’re going through. I know what it’s like to feel depressed and hopeless. This feeling will pass; small comfort though that may be now. You have a loving husband and daughter, and many devoted fans, including me. Together, we all reach out and embrace you in a web of love and support.
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suebeedee August 16th, 2009 at 1:26 pm
(((((Rachel)))))
Just read your post…..whatever, however you feel, is valid and real and acceptable. Don’t fight it just fall into it. As you despair at your own (perceived) weaknesses and vulnerabilities remember how every life contains these things. You just haven’t found your new normal yet. I hear how you seem to be aching with pain and lonliness, hold yourself in love and compassion, as I am now and know this will pass.
Much love and genuine friendship Suebee -
I have no wisdom. I’m in a weird place of my own and have very little energy left over for others right now, but I can’t not reach out to you right now. Sending you hopes that this will pass and you will find some peace in your hopeful heart.
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Something similar happened to me. “Waves of grief” indeed.
I married my husband thinking we would be the family I lost when I went through a divorce back in 2001. His daughter and son hated me for several years. It was a horrible experience.
My 14-year old daughter doesn’t want to come stay with me any more, because my husband and I fought so much because of his kids, and because she thinks I hide behind being Asperger’s. I annoy her.
But as much grief as there has been, things are starting to turn around. The son has apologized (after 4 years of hell) and now calls me mom, although he has now been living on his own for about 3 years. The daughter finally has come around and, although she hasn’t apologized, she treats me with kindness rather than contempt. She moved out a few months ago. I’m glad about that. It really was a horrible experience. But I’m glad she and I can be civil and that there’s no contempt from her any more.
My 14-year old will grow out of her contempt. Part of it is just her being a teen-ager.
I feel your sadness, but hopefully things will turn out okay. Just keep being you.
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I love you guys so much. Thank you for all your love, care, and wisdom. I am doing better today–still a little teary, but able to focus on positive things. It really helps to know that you all understand and support my process. {{{{{Hugs to all of you}}}}}}
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Jennifer Gardner August 17th, 2009 at 11:28 am
Rachel, I’m sorry to hear that you feel bad. I am more disappointed that you’ve set your mind to not ever going to see your daughter at college. In my opinion, Bob is your safe place. I think you should take a road trip. No public transportation. Ride in your own car and take in the quiet and the view. Take a little time to plan (but not over plan) so you have some expectation. Let Bob lead the way . . . If you have to, start small like a weekend trip somewhere quiet.
I certainly will never argue religion but I don’t think God has abandoned you. In my opinion, God has blessed you with a person who can take care of you. A guide so you can continue to enjoy life. Trust me when I say that my husband was given to me as a gift. So maybe God’s ways of doing things are strange but Jason was an answer to a prayer (literally). One I had prayed about for a long time (and it had nothing to do with finding the man of my dreams). In turn I have been charged with making sure he is safe and cared for.
I just think that maybe you are looking at the situation the wrong way. You are too positive of a person to go in the direction you speak.
I hope you find peace. -
Hi Jennifer, thanks for your kind and wise words. I will think on them, as I’ve been thinking on all the words that people have written over the past few days.
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Ultraviolet August 17th, 2009 at 9:19 pm
Hi Rachel,
I live in Bratt, too. Alas, I am somewhat closeted. I imagine that your husband would be the first to tell you not to slip into the Guy in the Sky perspective of God. Then it is too easy to be disappointed when you are faced with such a struggle (it sounds terrible, I absolutely feel for you). Ironically, my perseverations are related to Jewish mysticism and kabbalistic studies (not faux kabbalah). I also obsess over work of physicist/mathemetician Stan Tenen and the Meru Foundation (one has to be careful there, the Torah can consume you alive).
Rachel, Steinsaltz wrote that when seeking a confirmation/response from God, a person generally hears the longed-for answer not when he/she puts his question, not when he is struggling, but when he pauses on the summit and looks back on his life. It means that if we suddenly had that feeling of “behold, I’ve arrived” it would undermine the capacity to continue. The answer is in the process, so that in looking back we begin to get it, and get, in essence, a response or answers. We see the distance covered and our degree of progress. That also means that you can help others through the honest assessment of your own experiences.
“She who reconciles the ill-matched threads
of her life, and weaves them gratefully
into a single cloth-
it’s she who drives the loudmouths from the hall
and clears it for a different celebration.”
-Rilke -
Oh, Ultraviolet, what a beautiful quote from Rilke. And so appropriate for us middle-aged autistics.
I also like what you say about helping others through honest assessment of your own experiences–Rachel does that quite often, for me. I have been tremendously supported by her honest writing on both the happy days and the difficult ones.
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*BIG HUGS* (or substitute with display of affection that you are most comfortable with)
I don’t particularly believe in God so you’ll get no prostelytizing from me!
I won’t go into the why’s and wherefore’s but they’re not terribly different from what you’re feeling now. Anyway, I am sorry you’re going through this. I’m sorry (sympathetic sorry, by the way) that people are jackasses with their heads up their butts and they don’t have the good sense to be SENSITIVE to YOU. To me that speaks to their compassion for Bob because frankly, if they REALLY cared for Bob, they would not speak so condescendingly of the woman whom he is so obviously in love with who so obviously infuses his life with fullness and happiness.
And I think his daughter could use a good spanking. Only with my boot.
But really, people are insensitive and rude and inconsiderate and I am deeply sorry that it is hurting you. I’d beat them up if I were closer. And then I’d hang out with you until you were all like “K I wanna be alone now, see you later?” and then I’d leave and wouldn’t get my feelings hurt because I feel the same way all the time. -
Now that other people are talking about God, I’ll add what I really wanted to say the other day.
Whether you believe that God has afflicted you depends entirely on the doctrine you were raised with. Some people will believe that He has a direct impact on our lives, in the sense that He could decide whether or not to give us cancer.
Other people believe that He doesn’t step in to interfere with our biology because it would make the world too perfect and would stop us growing in wisdom, but He will step in to help us feel His strength and love.
That’s my view as a Christian who doesn’t know a whole lot about theology. But Jewish, Christian, Muslim, Hindu … I don’t think it makes a whole lot of difference. It’s all one God.
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DonkeyBuster August 18th, 2009 at 7:25 pm
hey Rachel…
Here’s a thought…
put your headphones on, take up your weighted blanket, go lay in the shade and look up at the sky. Just open up to the sky and breathe.I’ve been doing this every evening, just looking out, letting the words in my head be blah-blah. It’s a respite from the crunch, a way of de-railing the pain train for a little while.
I send you loving silence…
DB -
All things pass in time. We find peace through acceptance; prosperity in what we have, not what we want. Find strength in your husband’s eyes. Be brave for him, for your daughter, but mostly for yourself. You have the wisdom and insight to be able to vocalize your emotions with incredible clarity. Use this wisdom and insight to see that you only need the love and support of those that truly matter to you, and see that you have that.
Much love,
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To all of you: Many thanks and many blessings.
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Hi Rachel,
I have Asperger’s Syndrome, Bipolar, as well as ADHD. Sometimes, it is a rocky road and I feel misunderstood at times, but keep in mind, there is support out there and people whom do understand, whether it is a local support group from Meetup.com (Asperger’s/Autism) or an online support group for Asperger’s Syndrome. Sometimes, we feel misunderstood, but there still is hope out there. I find most of my support through Facebook and have become friends with quite many people in the Autism community. Cafemom.com is another great resource for mothers of babies, younger children, as well as adults. I think there are many resources out there, needing to be utilized and can be very beneficial. I hope my advice helps in someway.
Take care,
Michelle
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