Monday, July 20, 2015

Knowing too much

When does a support group stop being supportive?  Not in the way that members aren't thoughtful, helpful and caring.  It's more in the way I process the information that's being shared.

Whether it's an online support group or in-person, the emotional toll of being in a room (virtual or face to face) filled with so much loss, heartache, anger, frustration -- and even on the flip side - so much love - is sometimes just too much for my brain and my heart to take.  

Don't get me wrong. I will always, ALWAYS suggest finding a support group as a way to cope with whatever issues any of us face.  Overall, the benefit I get from being with a bunch of folks who understand what I'm dealing with is super positive.  

I also have moments of realizing how incredibly lucky I am.  People share such devastating stories about families who are far away or worse, close by and won't help.  Caregivers with young kids.  Or angry spouses.  Or an older parent who refuses help.  The list goes on.  I think, man!  I have an awesome family.  My friends are incredible.  My husband deals with his illness with so much grace and patience and continues to shower me with love and kindness.  

These are the things I hold on to when I face our future.  Support groups are like a crystal ball.  You get to look in to your future.  With ALS, the future doesn't offer hope, a treatment, a cure.  It's the slow wasting away of someone you love. 

Every day, in the ALS support groups, someone dies.  Every day, someone new joins the group and is facing the raw heartache of their future.  Every day, someone posts about the pain and frustration and the guilt of being a caregiver.  Of what it is to want to run away, to have a moment of what we used to have, to have a moment of being free from ALS and then you realize, soon enough, you will be free because your partner is dead.  

Every day someone posts about poop.  I kid you not. 

To listen to stories of what's to come is devastating.  On the one hand, it clears my head and let's me get ready for the worst.  I'm not sure, though, that I can take hearing what the end looks like.  Sure, maybe it won't be exactly what we go through.  But still... ALS ends up in the same place no matter how you get there. 

OMG!  I have to (sadly) laugh... everything I'm writing today is like a see-saw!  I hate this / But I'll be ok!  I feel bad / But I'll say this to feel better!   This is so devastating / this is so eye-opening!

Can you tell the emotional belly flops I feel every day?  I get up, muster up whatever it is (I was going to type the cliched "courage" but that's not it.  it's whatever just gets you up and out of bed), I climb up the diving board ready to face the day and sort of belly flop on the way down!  Back up the board, dive back down.   

I had this super "AHA" moment yesterday.  I realized that I do the very thing I don't always like:  I try to fix things.  I guess it's human nature.  You just want to hug everyone, wave the magic wand and make everything all right. 

In a caregiver support group I attended, a man needed a walker.  We have one we don't use and I got all jazzed and said you can have ours, I'll bring it next week, it's hardly used, I'm so excited I can fix your problem!  The group leader saw I was taking over this man's moment of sharing his experience and steered the conversation back on track.  

In that very moment, I totally realized I made this about me - look at me! Granted, I thought I was doing a nice thing and yet, I made it about me fixing his problem.  I put the spotlight on me when this was about him.  It was his time to share, his time to let us in to his experience.  

This is another flip-floppy thing.  In wanting to make someone feel better, in wanting to fix things - which is a great thing, right? - you are making this about YOU...   Which isn't so great, right?  I guess it's is in the timing.  Rather than truly listening to what the man above was saying about his frustration over his wife losing her mobility, over the process of dealing with insurance, his grief over the loss of their life together, I was busy formulating a way I could fix what I thought was the problem.  I stopped listening.

When is something truly fixable?  When is it right to offer suggestions or help and when is it right to just offer your ears?  A hug.  The proverbial shoulder to lean on.  Most times, I'm thinking it's best just to listen, say I love you and I'm here for you.  It's a tough call.  

I never know how to end these ramblings.  I see how many people read each post.  (Kind of spooky in a Big Brother way)  Some days it's 25.  Some days 155.  When I type, it's not with a reader in mind until I get to this part, the end part.  It's like I want to say "and thanks for stopping by."  Other times I feel like I need to end it in an upbeat, profound way so you, dear reader, don't think you have to fix anything.  (I say this somewhat tongue in cheek.  Feel free to bring over brownies or offer to hang out with Luther anytime)

It's now 8 a.m.  Up since 5:30.  Got to sleep around 2.  Time to corral all these thoughts and set them aside and go give Luther a giant hug and another cup of coffee.

Hope we all have a good day.

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