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Friday, October 19, 2012

Help!

This is not a cry for help, but a post about crying for help.

It's hard to ask for help.  I've mentioned before that opening up isn't really something I do a lot (in person) but I'm learning.  Asking for help is related to that.  Asking for help is like opening up about weakness.  Asking for help sometimes feels like a personal failure.  Asking for help implies not being able to handle something "on my own".  And although what it feels like and what it is are often two very different things. . . it's hard to overcome the idea that needing help isn't some kind of failure.

Leslie's the same way about asking for help.  She gets more practice though, because I think she recognizes how uncomfortable asking for help is for me, and so she takes it upon herself to ask instead.

  • Can you help with the kids?  
  • Can you pick Lily up from the bus?
  • Can you drop Emma off at dance while we take Lily to therapy?  
  • Can you babysit so we can go out to dinner with friends?  

Each new request seems like more of an imposition than the last, and all of those requests for help seemed to default to her until I started noticing how much they stressed her out and vowed (silently to myself. . . I like to surprise) that I would start asking people more often.  And I do ask more often, but not more often than Leslie does.

In the autism blogosphere we talk a lot about "literal thinking" because in a lot of cases it applies to the diagnosis.  Leslie and I find that, at least with regard to asking for help, or accepting help, we tend to be very literal.  We need a lot of help, so I sometimes think that when it's offered in the context of "do you need us to. . . ", we scrutinize the concept a little too literally trying to decide if by accepting help when we want it but don't need it. . . we're perhaps going to "run out" of help when we literally need it, like offers of help are a zero sum equation and we've reached our limit.

It's nothing our family or friends are projecting on us. . . it's completely just how we're wired.  When you need a lot of help, the more you ask the more you try super hard not to ask again unless it's REALLY important, and you try to "save up" for when you really need it.  Sometimes the whole thing is made better when you aren't given a choice of whether you want help. . . it's just forced on you.  It makes it feel less like you're being a burden.

My wife underwent her final radiation treatment for "the recurrence" last week, and she's suffering for the accumulation of treatment this week.  Think of a beach vacation, when you walk in the house after a long day in the sun you look in the mirror and say, "Uh oh, looks like I got a little red!" then walk by the mirror an hour later and say, "Holy shit, I'm fried!". . . and apply that concept to 28 days of concentrated radiation.  Or, think of the worst sunburn you've ever had, only instead of it just blistering and peeling the top layer of skin, it goes all the way through your chest and out your back, weakening and embrittling even your bones.  She's got blister cream and prescription soaks and god knows what else. . . pain medicine so she can sleep through the night. . . cortisone. . . and she has to deal with my shit.

And she's tired.  And sick.  And her job said (I wasn't there, so I'll paraphrase), "Leslie, go home and rest.  You're forbidden to come back until next week."  And it came without a choice or a consequence, and so it felt less like she was taking "one more day off" or "one more day working from home" and became more of "they said I have to do this. . . so I will."  Less guilt. . . easier to accept.

Leslie's mother called me at work yesterday and asked me if they could help last night.  I didn't honestly know how to answer her.  Leslie had told me she was feeling about the same as she had the previous day, but the previous day she'd worked.  I really wasn't sure she needed the help.  I told her I'd call Leslie and find out if she thought she needed it.

It was there that I sort of failed the whole process.  I had the help.  It was right there.  It was being offered, it's not like I had to go out and ask for it, but then I said to Leslie, "Leslie, your folks have offered to help this afternoon if you need it.  Do you need them to come over and help with Lily and Em til I get home?"

Did she need the help?  She said no.  Why?  Because she didn't.  Not really.  Need?  No. . . need's too strong a word.  Would help have been . . . helpful?  Would it have been awesome?  Would it have given her a chance to get some damn sleep?  Sure. . . but she didn't need it, and so she said no.  And suffered through it.  And I. . . I let her.

When I got home last night my wife talked to me when we had a free moment and told me tiredly what I (of all people) should have known. . . "Don't ask if I 'need' help anymore, okay?  Just tell me who's helping."  And I got it.  We talked about the whole idea of "needing" versus "really really wanting" and how sometimes when you balance how much help we seem to request "need" takes on an almost literal definition.  "Need" becomes "I'm physically unable to move and require assistance" instead of. . . "I'm really sapped of strength, and Lily keeps hitting me on the radiation burns and I can't fend her off and rest at the same time and, and, and. . . "

Thanks everyone for helping when we've asked, and for offering when we haven't.  I have a feeling we won't be turning it down too much over the next couple weeks. . . we need to get over ourselves in that respect; we need to stop defining need quite so literally, or recognize that there actually is a literal need right now.

Here's me in a magical unicorn mask (because it felt like this post needed it)

45 comments:

  1. Big, ginormous, massive (yet tender so as not to hurt the burns) hugs to you both. I have nothing more to offer than that. Well, and the fact that your team (you and Leslie) are amazing. You both are so lucky to have each other. The love and support here is just wonderful.

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    1. Can you babysit for us this weekend though?

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  2. I am glad you are going to try and "get over yourselves" in the coming weeks.

    I too have the same problem yet on the flip side I have the need to help others whenever I can. I've come to realize it's a win-win situation. :D

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    1. just in the coming weeks. . . then it's back to being all weird about it.

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  3. I a always afraid that I will accept help for the wrong thing and then kick myself. I am glad you posted this story to make us all realize how crazy that is, so that maybe we can get of ourselves too. Hope you are surrounded by love and help this weekend, and yes, that mask was exactly what this post needed!

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    1. right? what part of "Help" is not covered by magical unicorn mask?

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  4. It's awesome that your wife told you that. Too many of us would just stomp around being pissed that you didn't read our minds.

    She's tough.

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    1. Yeah, she's tough. But she's horrible at reading maps. Just. . . in case you didn't know.

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  5. I love the part about the zero sum equation. I think we all tend to feel that way. I'm glad you've recognized it and put Leslie first. I know I'd need help with a "sunburn" like that one and yes, I would not ask either. What is it about martyrdom? WIshing Leslie all the rest and help she needs to heal! (PS- that unicorn looks like another animal to me...)

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    1. what animal does it look like to you?? weirdo.

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  6. This subject is one of the toughest of all when we get in the position of needing others to give us a hand. So hard to figure out what's "needed" in the moment-and yet so damn hard to plan ahead too. I know, huh !~! I'm in the business of providing care and help and after thirty years I still struggle with some clients to meet their specifics.

    Best of luck to all the helpers, the helpees and the Little Ones who just want to be Loved thru it all.

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  7. I'm fairly literal with that whole "do you need help" thing, too. It is tough, I get it. I admire Leslie for speaking up. I would have probably just sulked in my room for the rest of the evening.

    Take care, hugs to you all, accept whatever help comes your way, and I hope Leslie's recovery goes well.

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  8. Yes, to everything you said. And, I think there's another side to this coin. As I read this I realized how often we present an offer of help as question: Do you 'need' help? I'm guilty of this, and equally guilty of feeling a little disappointed when I'm told no when it's obvious the person I'm asking *does* need help. The next time I want to help someone who is going through a tough spot, I will try to remember not to ask whether s/he "needs" help and just offer it. Thanks for the perspective, Jim. A healthy punch in the arm for you and a very gentle hug for Leslie.

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    1. Thanks, Danielle. She made me think. . . maybe some of my offers have been sort of passive-aggressive (I hope she won't say yes) kind of things. *shrugs*

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  9. I really do suck at reading maps...and lately not so good at 5th grade math. Thanks hon for getting me and understanding me! One thing that I know that I need is you-love you!! Happy birthday eve!

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    1. you really do. But you could be better. mwah!

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  10. Aw, I love you guys. You're solid, you know?

    If I was there I would butt right in and be MOST HELPFUL. Unfortunately, I am HERE. Which is far.

    Someday when I have a job I will send a care package. It will be filled with magic. Wait and see.

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    1. Right? I'm closer.. but um... it would be pretty weird if I was all "IMMA BABYSIT FOR YOU GUYS" and they were all "Uh. . . . . we've .. never met you in person? Do you really think you're going to be trusted alone with our children?" and that would be totally right.

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    2. Okay, when are you two coming to babysit. I'm cool with it.

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  11. Jim, I really like this post. It resonates strongly. It's a really good thing to remember.

    Also, I enjoy the thumbs up in the scary unicorn photo.

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  12. Yeah... See I've had a hard time responding to just about everything you've said over the past few days because the unicorn just really freaks me out. Please don't take it personally!

    So the help thing...you know what? You're a better man than me because it seems like you've at least figured it out. Me? Not so much. I still really don't *need* the help. One of these days though.... One of these days.

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    1. I almost forgot... Very gentle internet pain-free hugs to Leslie. Even though I've never really met you, I'm proud to know you.... You know what I mean?

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    2. Thank you...I feel like I know you all as well!!

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    3. The unicorn is me! Acceptance is the key, M2LM.

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  13. I hate the vulnerability that comes with accepting help, so I rarely do it even when I really, really should. It's something I've been trying to teach my kids how to do lately, because it's an important step towards independence. I like how you can admit when you stuffed up, that's another thing that's hard to do. Oh and I loved Leslie's comment! You guys are just so sweet. I hope you get some rest and feel better soon, Leslie.

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    1. I think the more you screw up the easier it becomes. I'm really really in practice.

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  14. mmm, hmmm. autism parenting requires some inner fortitude that prickles at the idea that we need help. glad y'all (well, leslie anyway) are bright enough to know where to draw the line. you've given me food for thought, oh mythical creature.

    perhaps it's time for a relationship column from the unicorn...

    thanks,
    j

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    1. I would write a kick ass relationship column. . .

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  15. This came right as I'm feeling overwhelmed with asking for help of a different nature. You're awesome. Thanks for hitting the nail on the head with this one :)

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    1. Thanks, Tara. I hope things are going better for you.

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  16. This post is awesome Jim, and so important to talk about. And what Leslie said? Perfect. Wishing you guys a little time and peace to recover and be together while you accept help from friends and family.

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  17. Wish I lived closer so I could help. Glad to hear Leslie's treatment is over, though. Hope she'll be feeling a bit better soon. *Hugs*

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    1. you could commute. . . thanks, Deb.

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  18. I completely understand - both Tom and I do not like to ask for help, either. I always wonder how nice it is to be a part of a couple where at least one of them can ask a favor without the layers of guilt that go with it. I'm glad y'all are figuring out to at least accept offered help because it definitely sounds like you NEED it.

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    1. I always thought it was a "german" thing. But maybe it's not ethno-specific. I totally made that word up.

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  19. I'm sorry I haven't kept up with you and yours! Excellent post. One of these forevers I will figure out how to get email updates. <3

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  20. I would like to ask you to share some links to other resources concerning this topic of course if you are aware of any.

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