Last night my husband and I met with our bishop and the Young Women president to discuss some problems that our fourteen-year-old daughter is having at church, specifically in Young Women. Our daughter has Asperger’s Syndrome as well as some mental health issues that the AS exacerbates. We’ve lived in this ward since our daughter was five years old, and the patience that people have had with her, as well as the genuine care and concern, has been remarkable to me. If people have had unkind feelings or uncharitable opinions about any of my children, they’ve been considerate and careful enough to keep them to themselves, or at least away from me. I am grateful for people’s tireless efforts to make my daughter who hates church feel welcome at church, even when it hasn’t worked. This goes for the youth as well as the adults (which is double, maybe triply, remarkable).
When I was a more anonymous blogger, I felt free to write more candidly about her problems–or rather, the problems that I had with her. Now that I’m not as anonymous as I’d prefer, I’m trying harder to respect her privacy. I suppose if I were trying super-hard, I wouldn’t be writing this post at all, but in my defense, my daughter is a pretty open book. She has a hard time keeping secrets herself; I will just have to keep some on her behalf. So I will break the first rule of good writing and won’t be specific, but suffice it to say that in our meeting last night we concluded that our daughter won’t attend her third-hour class on Sunday, at least not for a while. This was not the “solution” the bishop or YW president wanted or suggested; it was offered by us and reluctantly accepted by them, with the understanding that it is intended to be temporary–but who knows how long it will last. What are we going to do with her in the meantime? Well, a couple different ideas were floated, but in the near future probably either her father or I will just sit with her that third hour. Or possibly walk around. (Or both.) We’ll see.
The word compassion literally means “to suffer with.” I’m tired, and it’s hard to work up enthusiasm for explaining the derivation from the Latin when I know I am bound to get it not quite right (having only studied Latin a few weeks in the seventh grade and lacking the requisite Google skills) and there are at least a hundred Latin scholars reading this blog who will gladly do it for me. (Have at it, Latin lovers.) But back to my point: upon and ever since learning this factoid, I have been struck by the profundity of it. I think we all understand the virtue of compassion and aspire to it in theory, but we don’t necessarily practice it that much, for one simple reason: it’s too painful. If you’re a normal person, you will naturally feel empathy for others, especially in their suffering. Some people are more empathetic than others. Generally, we think of compassion as empathizing strongly enough that are moved to act, in order to alleviate or eliminate suffering. But sometimes eliminating or alleviating the suffering isn’t possible. And then what do we do?
I’ve noticed that it’s much easier to be “compassionate” toward people we don’t have to interact with on a regular basis. I think that I have genuine compassion toward my daughter. I can relate to much of what she’s going through, having experienced it myself, but beyond that, I’m her mother; instinctively I’m inclined to view her behavior more charitably than other people might. I’ve known her all her life, and as Elizabeth Stone so eloquently put it, to have a child is “to decide forever to have your heart go walking around outside your body.” That said, my daughter has given me so opportunities to practice compassion that I have grown weary of it, and prone to fatigue. Compassion moves us to act, as it ought to move us, but when our actions don’t produce the desired result, i.e. less suffering, what do we do? Well, we try something else, obviously. And when that doesn’t work? We try something else. And when that doesn’t work? We try more of the stuff we already tried. And we try again. And again.
Until we’ve had enough. I will level with you, kids: I have had enough. About a million times I’ve had enough. I give up on my daughter entirely on a semi-regular basis. I can’t do it permanently because a) that would be wrong and b) I just can’t. But I won’t pretend that I’m not fatigued, and I guess I’d also better not pretend that I hide my fatigue as well or as often as I should. I know that my daughter is suffering, but I also know that I can’t help the suffering; what I would like is to not have to suffer with her, given that I can’t do anything to solve the problem. The solutions to some problems lie outside our control; when the person who can solve a problem fails to do so, whether by choice or lack of ability (the difference between these is not always clear), the only thing for a compassionate person to do is to wait…perhaps pray, if you’re so inclined…and suffer with.
It’s not comfortable or pleasant. When we try to help someone, we expect to feel warm and fuzzy about it. We don’t expect to feel frustrated or get angry. We don’t like this anxious feeling, the irresistible urge to do something, anything, just so we can stop this suffering. We don’t expect to have to suffer long, whether it’s for ourselves or for someone else. Some things only God can fix. I’ve often thought He seems to take His sweet time fixing my problems, but, you know, He has fixed some of them. Something He has not fixed is the situation with my daughter. Whether or not He ever fixes her problems is something I can’t predict. I hold out hope that He may bless me with some inspiration to do right by her, but until her suffering is eliminated or alleviated, I don’t think He means to eliminate or alleviate my suffering with her. I think He means to teach me how He feels.
By Common Consent, a Mormon Blog 
Parenting is hard work. Maybe not if the children always do what they’re told, get educations, marry in the temple, support themselves, yada, yada. For those of us with children who have heard of agency, and choose to exercise it differently than we would wish – or don’t have the capacity to exercise it as we would wish, parenting is a real PITA.
Stunning.
Thank you for this, Rebecca. Poignant and heartfelt words. One of the most difficult things to do as a human being. It requires a sometimes frightening level of vulnerability.
Powerful. RJ, you’re the best at being you. And I like you a lot.
Amen x 1,000,000. Doris Lessing (I think) said that one of the perks of not having children must be the ability to continue thinking of yourself as a nice person. It’s sobering and humbling–often humiliating–to be shown exactly where your limits are, and what you are like when you’re pushed past them.
As a parent of a bipolar 25 year old, I feel your pain. Thank you for sharing the words that I probably could not.
i feel you. my 5 year old is deeply introverted and he hates how much interaction church involves…that’s a lie. he hates church- largely because of how much beyond his comfort he is asked to interact with people. we are unitarian and i am the director of religious education. every sunday the kids are asked to take 2 stones and share one joy and one sorrow. my son refused to participate for a year, would reluctantly whisper one thing for me to share on his behalf (i say reluctant but it was a mix of belligerent anger and deep shyness) until last month when he finally spoke his own joy and sorrow outloud, for the first time. “my joy is i got to go hikeing with my dad and my sorrow is…i had to go to church.”
it’s just hard.
I find it comfortingly coincidental that on the same day you post “Suffering with those who suffer”, there’s a post over at rationalfaiths.com called “Mourning With Those Who Mourn”. We all need more help learning to be compassionate.
I just want to say you are an amazing person, RJ. Thank you for sharing these things.
I’m a YW president, and I’m just curious, but would it have made any difference if the YW president had offered to be the one to sit with your daughter? Or maybe another YW or YW leader? I realize that that might not be a good solution for your daughter and I’m not really trying to offer any solution here. It was just my first reaction when I read that you and your husband would do that. I’ve had a couple of YW who I believe were on the Autism spectrum (though I’m not positive) and often we just did certain things differently to help them be comfortable. There were some Sundays and mutuals where one of them just preferred to curl up and take a nap in a corner of the room or the foyer. We’d always just tell her, “We miss you when you’re away. Are you comfortable here? Is there anything you need?” Sometimes she’d want a blanket or a book or a pen and paper, and we’d get them for her. I understand that this situation might seem completely inappropriate to some people, but it was appropriate for that YW at that time, and I feel like that’s what matters.
Anyway, that’s not the point of your post. I think sometimes it is painful to mourn or suffer with those who mourn/suffer. I believe that makes the suffering we feel on others’ behalf to be holy (to a point–there comes a time where we can take on too much of course–we are after all, not the Savior who had the capacity for all of it). I think that’s why I’m so glad for the Gift of the Holy Ghost. We may admire stoicism in our culture, and yet in that same stoicism we can run the risk of denying others the opportunity to serve us. I think it sometimes is a virtue to bear our trials without complaint, HOWEVER, I also think sometimes there is great virtue in sharing our vulnerabilities and fears (and fatigue) with others, and the Spirit can help us know what will best help us at different times in our lives.
The Latin noun from which English “compassion” derives, compassio, comes from the verb compati, from com- “together” + pati “to suffer”. It is the Latin equivalent of the Greek sumpatheia, which comes into English as “sympathy,” and which also derives from roots meaning “to suffer together.”
I knew Kevin Barney would come through for me.
Heidi Ann, this is more or less what the YW leaders have been doing with her–whoever isn’t teaching will take her for some one on one time when she gets upset, until she’s ready to go back. She has good relationships with the YW leaders, but for reasons too complex to get into here, we need to do things differently. In the short term, my husband and I are going to mind her the third hour, but who knows what direction we’ll end up going in the long term. I’m prepared to be surprised!
This post touches me deeply. How well I know that feeling of deep fatigue and also the creeping despair that maybe this will never get better. Often at night when I’m tired and frustrated and my son isn’t doing well I want to give up. I feel like okay this is the end. There’s nothing more in my heart to give. Then overnight some miracle happens and I wake replenished. I tell myself that when you’re a parent you have to think in terms of decades and not days or weeks or even years. Have we made any progress this decade? You go long periods of time without feeling any progress is made at all. Then you might learn something new, some new technique, some new perspective, or find a new medicine and for a while it’s a source of hope. Then you just keep on trying to do your best, day by day. Keep hope anchored somewhere outside the realm of daily life and in the eternities. Keep love replenished. Feed our spirits. Do our best to channel the divine. Offer our broken hearts to the Lord in prayer. Cast our burdens at His feet. Know that breakthroughs are possible, miracles happen every day. That real heroism consists in getting up and trying again day by day. In being willing to keep trying. Blessings to you and your family. You’re not alone.
Thanks, RJ.
Raising kids is tough. I told my coworker that when her three year old son is doing something wrong just shake her finger at him and say don’t do it!
Right there with you, RJ. Raising kids is difficult… adding in a disability, of any bent, amplifies everything. I saw myself in your words. Thank you.
“I’ve noticed that it’s much easier to be “compassionate” toward people we don’t have to interact with on a regular basis.” There are worlds within this sentence. And you live in one of them. Damn. And God bless you.
Thank you for this post. It fed me today.
Your thoughts about God not fixing certain (most) things for us reminds me of the passage of scripture where Jeremiah writes to the Jews stuck in Babylon (Jeremiah 29:4-7 in particular). He basically tells them to get used to it: plant gardens, prepare your children for marriage, seek the peace of the place your are planted. Which I am sure is not what they wanted to hear. And to make matters worse Jeremiah wrote it from Jerusalem, exactly where they wanted to be. That cannot have been a fun letter to get.
This seems to be the most common way God operates. I can only conclude that to him the lessons we learn are worth the price we pay in suffering. Your last line “He means to teach me how He feels” is profound.
Thank you, Rebecca.
I love the movie “What Dreams May Come” – especially the message at the end that says, in essence, “True love is preferring to live in Hell with someone rather than living in Heaven without them.”
My father laid down his life for my mother, due to her schizophrenia. He ltierally gave up everything that was in his future to put her in a situation in which she could function.
After her medication stopped working a few years ago, for the few months that it took to regulate her meds and get her back to functionality, he went through Hell – more literally than many people know. He told me toward the end of that period that he could never leave his sweetheart – but he understood completely why many people do. I will never forget that profound statement, and your post brought that to mind again.
I am grateful this time of the year for that reminder of a great man’s sacrifice.
As usual, love your posts, Rebecca, but this one… the last sentence hit me hard. Profound. =)
I am assuming you have asked your daughter what SHE would LIKE to do during the third hour. Our daughter K has many Aspergers traits and she, too, reached the point where she no longer wanted to go to YW. So we asked her how she would like to spend that hour. Some options were: sit in a quiet place and read a book, help teach a Primary class, help in the Nursery. She chose to go into Relief Society because some of the women in our ward were family friends she felt safe with. Is there someone your daughter LIKES at church who would be willing to teach her one on one, or just spend the 40 minutes talking with her? We have all covenanted to ‘mourn with those that mourn and comfort. . . ” It sounds like both you and your daughter need some compassion. I too have had moments when I wanted K to be someone else, someone easier to like. I continue to take comfort in this quote from Pres. Kimball (note that he, too, had people he HAD to love, even if he didn’t want to) : “I find that when I get casual in my relationships with divinity and when it seems that no divine ear is listening and no divine voice is speaking, that I am far, far away. If I immerse myself in the scriptures the distance narrows and the spirituality returns. I find myself loving more intensely those whom I must love with all my heart and mind and strength, and loving them more.”
RJ, I am coming to this a little bit late but God bless you and your family. This was deeply moving.
I have struggled a bit with one of my adopted daughters. Lately I’ve been starting to feel what you describe: she just does.not.get.it. (our problem is with obedience and honesty.) She does better sometimes, but there are times (possibly when life events overwhelm her) that trigger a period of just blatant, bland disobedience & dishonesty. It honestly frightens me. I love her, but I find myself separating from her emotionally during those times when absolutley nothing I do or say will help her change her worrisome behavior. Anyway. This post made me feel a little better… I’m not the only one in this boat sometimes.
And hopefully growth does occur… just sometimes too slow for us to notice or appreciate (or not rip our hair out over.)
I have read BCC for years and commented maybe twice, which I actually feel very guilty about. I feel like I glean so much from the writers (and the comments after) and never give anything back. A one way relationship where I’m always receiving. I’ve felt especially that way about most of Jacob, Kristine’s and your posts, Rebecca J. But anyway, I guess I’m sticking with my excuse that having three young children at home leaves me time and energy to read and think, but not discuss. And what I’m really saying is that I’m barely surviving this stage of motherhood as it is. Except I’m breaking my rule because this idea has been on my mind for so long. Trying to figure out how God feels and how I’m supposed to feel when I’m with those that suffer. Jacob’s Death and Rebirths series a few months back really brought it to a head for me. My husband is a therapist and from discussions with him and my own reading and study of human nature (with a fascination of C. Terry Warner’s work on the subject) it seems to me that the “to suffer with” kind of compassion is a lot like co-dependency. Is God sad when we’re sad? God suffers with us? Ok? Is his suffering like mine? Is He sad when I’m sad? Sometimes that feels comforting and sometimes it doesn’t. Usually, I hope not, actually. I guess I kind of hope the only emotions God feels are love and peace. Rebecca, that last paragraph just can’t be – why would God feel anxiety? Is it all semantics? Any thoughts to help me sort through that idea?
I’ve thought about that… worry over “codependency” if you’re taking on others’ burdens. And what I have decided is, it’s not codependency unless you are putting your own problems into what they are experiencing, and vice versa. When you basically need the other person to suffer in order to feel valid in your own suffering, that is codependency. To suffer with those that suffer, and mourn with those that mourn, is a holy thing. A baptismal covenant, actually :)
Maybe this will explain what I’m thinking better. I don’t get the phrase “suffering with those that suffer”, I feel like what I need from God (and others) is for them to be *with me* in my pain, not necessarily to *feel* my pain. When I cry, I don’t need someone to cry with me, but what I do need is for them to not be offended by my crying, or to feel like they need to stop my tears, or to feel like my pain is burdensome or unholy. Like, when a baby cries and people pat them on the back and say, “You’re ok – don’t cry, now, now it’s ok….” I take that seriously, like – you know what – I don’t need to feel sad when my baby is feeling sad, but I do want to *allow* her to feel sad. I want her to know that I’m there for her and that nothing she feels or does will turn me away, no matter how long or intense her feelings of pain are. That is what I feel like God does when he has compassion, or “to suffer with”. Like to suffer in the “to allow” kind of definition. I feel like God stays connected to us, even in our darkest hours. He’s with us down there, but He’s not necessarily feeling what we’re feeling. That to me is how I want to feel when I hug my sister with depression – I don’t want to suffer her same pain, but I want to truly be there with her, acknowledging that her pain is real and that I won’t ever leave her (emotionally) even if she feels terrible forever. And it’s what I crave from others – someone who isn’t really affected by my pain, and that’s why they can abide being with me during it, no matter how bad it gets. Does that make sense to anyone else? Is that what Jacob and Rebecca J are saying as well, is it just semantics or a different perspective?
I think it is Ok and even desirable to feel another’s pain with them. The difference between Codependency and Compassion is Codependency has a selfish, insecure element to it… you *need* someone to *need* you.
I believe Christ felt all our pain. And we are supposed to be like him :)
I don’t want people to hurt when I hurt, but I appreciate it when they take a moment to identify with my hurt, when I’m hurting. When they’re willing to take on a bit of pain and move through it with me. (Man, this is getting personal). But like you, it is only helpful when the person can handle that. And I know that I only help people when I can feel with them without being threatened by it, or putting too much of my own insecurity and pain into it. I think this is really what people want when they talk to others. I think that I feel able to cry/release pain better when someone cries with me.
Anyway.
Very timely post. I’m convinced that we don’t do enough to help the mentally ill. And it isn’t enough to have Church charity or individual charity.
We exist in a community that can and should provide services that reflect the values of the community members — that community is called government.
JRW – Thank you for your comments. When I talk about suffering with my daughter, I don’t think that I’m suffering in the same way she does. It’s a different kind of suffering, when you empathize with someone’s pain and want to help them but can’t. I suppose it is a matter of semantics. I don’t know. I’ve thought a lot about God as parent since I became a parent. I’ve often thought that if I parented my children the way God parents us–or at least the way he seems to parent me–I’d probably lose custody of them. God doesn’t intervene with me in the same way I’m obligated (sometimes legally) to intervene with my children. I think my daughter sometimes suspects that my failure to help her is because I don’t understand or I don’t care enough, but it’s quite the opposite–I do understand and I do care, but I just can’t help. Due to the nature of our mortal experience, this is effectively similar to the position that God is in. I don’t imagine that he’s literally feeling exactly what I’m feeling any more than I’m literally feeling exactly what my child is feeling. But it’s hard to be present with someone who’s suffering. I’d like to believe that God is able to be present with me in my suffering without becoming annoyed, angry or frustrated with me or in any way cutting himself off emotionally from me.
This means more than you can imagine, Cynthia.
Rebecca, I don’t know how anyone can read your post and not have their life changed. I feel like I am a different person than the one who woke up this morning. I have forwarded your post to family and friends, some of whom have autistic children. You have touched my life in an eloquent, significant way. Thank you.
let me offer you my sympathy. my 14 year old daughter also suffers from aspergers. back when I believed in the church, it was real pain having her sit through church. she hated it. it wasn’t that the ward didn’t try. they did, it just didn’t work.
they are days I just want to be done with it.
Thank you Sarah and Rebecca for the good thoughts for me to ponder on. Merry Christmas!