Monday, September 28, 2015


I haven't written much lately.  I think because my emotions are buried somewhere so I can't find them.  I get tired of being tired and sad.

I suppose we don't vent about the good things, right?  How often does someone call you to say, hey! I'm having the BEST day.  Maybe we should do that more!

Someone in an ALS group posted this:

I've talked about this before - how with a long term illness - I imagine even with a chronic but not terminal illness - you experience these stages of grief and loss all the time.  A friend, whose husband died of cancer several years ago, sent me an article called "Anticipatory Grief."

I thought this was such a great way to think about this sense of loss.  We sit and wait for the next thing to happen, the next change.  It's a sh*tty way to live.

So instead of sitting around and waiting and moping and crying (which I still do...) - we try to grab on to the good things, the things that keep us afloat.  Little life jackets, I guess.  The things that keep us from sinking in to a deeper depression, that keep me from falling apart on a daily basis.

Luther's ok.  Last night he just puked forever.  He'd done this back in July and ended up in the hospital twice.  They couldn't figure out what was up.  Then we had two months of no throwing up and BAM - last night it was awful.  I was in my room (we don't sleep together - another loss...) and I didn't hear him.  All of a sudden I heard a weird sound and ran out.  Man oh man!  He was a mess.

My poor guy.  Can't move.  Sitting straight up, puking down his shirt.  I felt so awful.

The other night, he said he was calling for me for about 45 minutes.  I didn't hear him.  He was in bed and needed to get up to pee.  I mean really.  What an awful feeling.

Maybe time for a baby monitor??

Luther's usually such a trooper.  He's my rock.  I try to be one for him too but I'm more like a pebble. I get tired easily.  Worn down.  I know my mood affects his.  I've been retreating more and more and I know this is really bad for our relationship.

I think, at the heart of it, is I'm scared that if I let myself feel how much I love him, the hurt of seeing him so helpless will be too great.  If I just keep a wedge between us, I can protect myself from that level of hurt.

Which, I know is a big fat lie.  That wedge also prevents us from feeling happy too.

That's the thing with burying negative feelings.  You don't get to pick and choose which feelings you hide.  You end up burying all of them and NOT feeling anything.

In order to feel love and happy and joy, you have to experience the sadness and the hurt.  Years of therapy taught me this :)   So even though I start building a wall against feeling the bad stuff, I generally find a way to stop building it too high and I share those feelings:  here in this blog, with friends or family, with Luther.  I've learned that sharing this burden of sadness creates space for light and happiness.

I do think it's important to share the good stuff too.  I've read through some past blog posts and it gets really old really fast - the same concerns, complaints, whining, venting over and over again.

How do you get out of it, though? How do you process those feelings? It's a fine line between wallowing in self pity and recognizing true grief.

Life moves along, though.  I'm not the only one with issues.  I need to be a good friend, a good sister and daughter.  I need to be a better caregiver and more important, wife.

This is all too profound for a Monday morning.  I think it was the throwing up -- it got me to pondering about all this stuff.

We're actually leaving for a little vacation today - off to South Dakota.  He's never been.  I think Wall Drug and the Corn Palace will make me feel super happy!

Saturday, September 19, 2015


Today was our ALS walk.  It was a beautiful day!  We had about nine people on Team Squirrel and raised about $1800 - so we had many people walk with us "in spirit."

This was our team - both Luther and I were so appreciative of everyone who came out and walked with us.

The donations people made were so generous too.  We asked folks to donate for the Ice Bucket challenge in August and now we were asking for more for the walk!

There were a ton of people out - it was a lot of fun.

Wednesday, September 9, 2015

four in the afternoon

Busy day.  Busy week.  Not used to busy anymore.  Lots of changes.  A little drama.  Am suddenly feeling the need to hibernate.

The changes aren't due to Luther - although he seem weaker, he's in a good holding pattern.  His breathing / swallowing hasn't changed for six months and that's AWESOME.

Isn't it always about me?  This blog, this angst.  I feel guilty about that.

Thank God I don't have ALS, right? Always this overriding sense of get happier,  Find the bright side.   A little Monty Python, if you care to click:

I'm sitting outside after a long day.  It's really nice out.  I have this overwhelming feeling of not wanting to go in the house.  I want to stay right here.  OUTSIDE.  Feeling a light breeze. Sunny but not hot.  Quiet.  Peaceful.  Just me.  I don't want to go in.

I go to therapy and suddenly with the Emily Program eating thing, I go to a lot of therapy.  What one of the therapists said is this how I'm going to feel.   Literally heavy in the physical sense AND the emotional sense.  She likened it to having a sliver.  It hurts like crazy as you poke and dig at it but once the dang thing comes out, relief!!

She said therapy is poking, digging, prodding in to uncomfortable things.  It will hurt for a time.  It's new feelings, unfamiliar situations.  How can it not produce feelings of anxiety and uncertainty?

I liked that analogy.  I get way too consumed with guilt.  It lifted that burden and made me think I needed to cut me and even Ed some slack.

Life is really slow these days.  Different.  It's ok.  I don't have to be out there pulling myself up by my bootstraps or living each day like it's our last.  We can enjoy this slow time, enjoy each other, do a crossword puzzle, hang out on the patio.

Tuesday, September 8, 2015


ALS is a disease of loss.  I've lost my job.  My long-term future with Lynn, my friends and family.  I've lost the use of my arms and now most of my legs.  

We lost the ability to stay in our home and moved in with Lynn's parents. I can't feed myself, brush my own teeth, hold my wife's hand.

ALS has no "survivors."  No cure.  No treatment.  I know my future.  I will become paralyzed yet still feel.  I will lose the ability to talk but not think.  I will lose the ability to eat, swallow and eventually breath.  

This video is from the NFL about ALS. The man who wrote it just died of ALS.  It's what prompted me to write this post.   Click the link below:

Our ALS Walk is coming up Saturday, Sept 19. Thanks to everyone who's signed up and donated. If you could join us, please do. If you can donate, do that. The link is below:

Tuesday, September 1, 2015

Didn't mean to rain on your parade......

Haven't posted here in a while. Things are ok.  Sort of funky.  Feeling hot and slow.  Ed's good - he seems tired too.  He's weird tired, though.  Like he gets these bursts of energy for the things he wants to do but then is tired for anything else.  I suppose that's the disease...

Take going to the state fair.  I do NOT want to go.  I know I'm being selfish.  It's super hot and muggy so there's that.  But more than the weather is the hassle of the wheelchair and the on-going status of his hand.  I thought his hand was pretty much shot.  It is shot!!!  He can move a couple fingers and change the remote.  When he gets stressed, his whole arm will get frozen (you can touch his arm and it feels ice cold) and then his hand stops working.

Soooooooo - in my usual way - I'm thinking about everything that can go wrong.  Crowds, getting on the bus, sticky hot weather, feeding him, going in and out of buildings filled with people, and finally his hand decides to stop working and it's a long miserable trip home.

He is super jazzed to go the the fair.  How can I say no??  It's like this bucket list trip he had to go to Wyoming.  I have to drive he entire way.  It's this amazing drag to think about.  I feel the weight of how much I dislike it pressing on me.  Add the guilt that I'm raining in to his bucket.

He did modify Wyoming down to South Dakota.  The odd thing is, the whole planning falls down on me too.  It's Sept 1 and we haven't made any plans to go.  I suppose I should just sit down and get 'r done in terms of things to do, reservations, etc.   I get a little pissy because he's mentally capable.  He can say "grab the laptop, let's do this together."

Luther is like this little kid.  On the South Dakota trip, he wants to go four wheeling.  He's really excited about getting strapped in to an ATV that I'll be driving and head in to the woods at 50 miles an hour.   Ummmmmmmmm - no.  No no no.  Is that wrong?  I wouldn't mind if someone else drove him around.  Well - yes, I would mind.  He's like a ragdoll strapped in to this machine that could fling him in to the air at any time.  Even if no flinging is involved, the physical toll it would take on his body will be outrageous.

So here we go again.  Sorry, honey - you just can't have any fun.

I know there's a middle ground.  We can find some other way to get that outdoor, ATV excitement. But I feel like I'm always raining on his parade.

I'm not sure how I got off on this tangent.  Just wanted to check in, say it's been a fairly quiet week and sign off.

Hmmmmmm.  Clearly there are a few things on my mind.