Lazy summer days

Things are good.  Luther's felt better.  No hospital visits, so that's a plus!!

I'm feeling pretty blessed.  Top of the rollercoaster, I guess.  You know what would be great?  A flat rollercoaster.  I suppose that's called a train?

Plateaus are good.  Great!  We talk a lot ("we" meaning us folks in the ALS world) about plateaus.  I think I've mentioned this in other posts.

Something rotten will happen.  We are shocked, sad, depressed.  Then we get used to the change and everything's ok for a time.  Then another change occurs and it's another adjustment.

You know the five steps of grief?
1.  Denial
2.  Anger
3.  Bargaining
4.  Depression
5.  Acceptance

It's like we live this over and over and over.  It's the weirdest way to live.  We never get a chance to just breath.  Ok, that's dramatic.  We do just live our lives day to day.  We aren't moping around ALL the time.  It's more like there's this weight in your heart or a little gray cloud that just hangs around you.

Anyways - I didn't mean to get in to another philosophical paragraph about living your best life and all that.  Instead, I just wanted to report that - after a month of some really sh*tty stuff - it's been a good couple of weeks.  Well - maybe a good week and a half!!

My heart busts sometimes with how much I love Luther.  I never ever thought I'd love someone so much.  It's so funny, too... when we first met I just wasn't so sure.  Now, I feel really lucky to have him in my life.

I was thinking about documenting more of our life together.  More pictures.  More blog posts.  I bought a scrapbook in which to put our memories.  I can't remember what I did three days ago -- you know how that goes??  You look back and think - where did the time go?  I mean for heaven's sake, it's going to be August!  Where'd the summer go?!

I don't want to forget.  In a year from now, five, ten years... I want to remember everything.


Just Breathe - Pearl Jam:

https://www.youtube.com/watch?v=E5bAawsa7_s

Yes, I understand that every life must end
As we sit alone, I know someday we must go
I'm a lucky man, to count on both hands the ones I love
Some folks just have one, others, they've got none

Stay with me / Let's just breathe

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.

Sort of stuck.

I haven't been here in blog-world, for a while.  I feel like I'm yapping about the same stuff over and over.  It's like therapy.  It feels good to get things out of my head but sometimes it's this giant circle or hamster wheel - turning the same things over and over.

This life - this caregiving life - is hard to explain.  Hard to get people to understand what it's like to be in a relationship with someone who's dying in front of you.  It's a constant battle of being grateful and feeling guilty and walking in quicksand.... mired in sadness.

I'm always tired.  It's a combination of things. Not sleeping through the night.  Getting to bed late / up really early.  But it's more than that.

The emotional toll wears me down.  It's not an active thing. I'm not sure I can even describe it?

I do get tired lifting up Luther or getting him dressed.  But that doesn't happen all the time. So it's not like when you get tired from doing physical things.  Instead, it's this slow wearing down.

Either I tuck away these feelings about my husband having a terminal illness and just forget about it so I can make it through the day.  If I - like I am now - think about it, it's too much.  It's like waves crashing over me.  I feel scared and hollow.

You don't, though, go through the day thinking about it or I'd be a complete mess.  Instead, I'm just a little mess!  So what do you do?  Bury the feelings?  Take them out every so often and face them?

It's a lose lose.  If I keep the feelings on the surface, I'm overwhelmed.  If I hide them away, I can go through the motions but they eventually catch up with me and send me in to full out hide-under-the-covers mode.

I see a therapist on a weekly basis.  That helps.  I get to lay out the confusion, the anger, the uncertainty and he sets me back on course.  Sometimes I just sit and cry for 1/2 hour.

I write here.  That helps me sort through things.

Mostly, I face this head on.  I don't tuck away the feelings.  Maybe I put them in my purse and carry them around!!  Every so often, I'm guilty of eating my feelings and that's a bummer.  A row of Oreos later, I realize I'm trying to fill up some sad hole in my heart.  That's when I get up and hug Luther.

Is it fair for me to spend so much time pondering?  There are kids who are sick.  People living with chronic illness.  Wives in my situation who still have to work because they can't afford to stay home. People in far away places born in to terrible circumstances.

Am I lucky?  How do I put these things in perspective?  Each time I have a negative feeling, must I think someone else has it worse than me in order to feel better?

I don't know the answer.  Maybe I flip that last statement. Each time I have a negative feeling, I MUST think about all the good things I have in my life.  Quite often, I do that. It's important to do that.

I have love.  I am afforded this time to stay at home and spend time with Luther.  I have an amazing support system from my family and friends.

I've been sad and tired this last couple of weeks and now that Luther's laying low, recovering, I've had this time on my hands.

I've run a million "shoulds" through my head: I should be doing more, I should be calling friends, I should be getting out more.... SHOULD  should be banned from our vocabulary.

Either do or don't and be content with the decision.  So, for the last week, I didn't. I hung out with Luther.  Slept. Thought about the future. Rubbed Luther's hands and feet.  And finally, I'm here. Ready to do.

One year ago, this is what my husband said...

My dearest Lynn, today is a very special day and you are a

special woman. 

I'll never forget our first exchange of messages nor the first time we met in person. I can still see you walking down the hallway at the airport with your hair in pigtails wearing a jean skirt and boots. 

After we had seen each other a few times we started talking about you moving to Richmond but instead here I am. I came charging into your life like a bull in a China shop.

The day I was diagnosed with ALS you made a decision that was awe inspiring. We have been dealt a hand that many people would have folded but you've decided to play this through with me. 

I will love you until I draw my last breath. I will cherish every moment we have together. It will be my honor to take you as my wife. 

There will never be another day as special as today. I promise you that I will do everything in my power to show you each and every day what you mean to me.

I know that no matter what comes our way our love will live for ever in our hearts. So in the future whenever you feel despair look back on this day and remember that I'll always be with you.

I'd also like to say that I've not only gained a wife but also

become part of a great family today.