Reality check...

At the Vets Hospital today.  Range of motion exercise test to see if Luther's eligible for a motorized wheelchair. He is.  Things are happening faster than we want to see, than we want to accept.

We thought for a time, he could use a cane.  In your head, you have this cool image:  a wandering nomad with his big stick.  Big Daddy with his cool cane.  But he can't grip so he can't hold the cane.

They're providing him with this techno-walker.  No tennis balls on his walker!  It's got four wheels, turns on a dime, has elbow rests (which he really needs - his arms are like heavy weights hanging from his shoulders), a basket!! and a seat.

He went from one brace on his leg to two.  They're actually kind of cool.  They strap around his leg and brace the front of his leg.  Knee high.  Super lightweight metal that curves under his foot and slide in to his shoe.

It's humbling to be at the VA.  My moments of "geez, I have to get up early" sort of pale.  I know I have to recognize my issues  - I think it's legitimate to say I'm tired and figure out how to find more time - and yet, when I put it in perspective, the scale of my issues are small.

It's a bright, sunny warm day today.  Feels good.  Feels hopeful.

http://www.youtube.com/watch?v=8rXiNe_-WT4   <---- Power of  Two, Indigo Girls

"Baby I'm here to stop your crying
Chase all the ghosts from your head
I'm stronger than the monster beneath your bed
Smarter than the tricks played on your heart
We'll look at them together then we'll take them apart

Adding up the total of a love that's true
Multiply life by the Power Of Two"

Selfish thoughts on a Monday morning

6 am

My time is no longer my own.

Rearranging my work schedule on a weekly basis because of Luther.

Changing jobs, stepping down as a manager so I can be closer to home.  I'm no longer in charge; I've acquiesced a 16 year career.

This morning, getting up early, fighting traffic to get him to an appointment because he's given up driving long distances.

My days off will no longer be my sanctuary in my quiet little home.  Since Luther's no longer working, he'll always be under foot.

Little things:  last night... exhausted, falling asleep, realizing I couldn't because I needed to pull the covers up over Luther - tuck him in bed, so to speak - because he doesn't have the arm strength to do it.  It was just a moment of my time, really no big deal.  But I add up these moments and it becomes something larger than me.

This isn't a rant or a complaint.  An observation, perhaps?  I don't feel guilty for thinking these things.  Guilt creeps in occasionally because, you know, death trumps all, and I think quit, ummmmm - observing!  (I was going to say bitching but that felt too harsh).  I realize, though, I "get" to have these feelings. I'm allowed to wonder where I fit in.  I don't want to be defined as the girl with the dying boyfriend and yet, this is who I am now.

Luther is usually aware of this and works hard to give me space.  I appreciate this.

Just a Monday morning, too early!   Anxious about driving to the VA in traffic, big changes at work, unsettled about where I'm going next.

Ok.  Time to tuck those thoughts away and get moving.

Retirement. Giving up? Letting go? The prospect of doing nothing.

Today is Luther's last day of work.  Last night, he was amped up like crazy and talked a mile a minute about everything.  Nervous energy, maybe?

I know he's jazzed about the prospect of not having to get up early, struggle to get dressed (make that me struggling to get him dressed after he's attempted to get dressed.  It's a 50/50 proposition whether he gets his socks on or not.  He tries and he gets major bonus points for still trying.), eat, get ready and yep - he's still driving.  I worry so much about the driving part.  He can't use his arms, remember?  Apparently he flings them in to the steering wheel since he can still move his arms side to side.  Just not up and down.

Giving things up is the hardest, isn't it?  Whether its letting go of a grudge, a past regret or resentment.  How many of us hold on to some old angry feeling because we want to be heard or need to be right?  Now take that THING we all have of holding on and think about giving up driving.  Work.  Putting on your socks.

The term "give up" feels negative.  Like you're a loser.  I give up.  I can't do it.  If you give up in the middle of having sex, well.  Lose.  You "give up" stuff for Lent and it's a hardship.  I'm giving up chocolate.  Suffer!  I suppose if you're giving up smoking, it's a good thing but it's still that feeling you're giving up something you enjoy.

As we age, we give up stuff.  Some things willingly.  I don't want to stay out until two in the morning like I did when I was 25.  Other things, not so willingly.  Same deal as quitting smoking.  I'm giving up mcnuggets, which I love, because I know - like the boyfriend I met when I was out until two in the morning - they're bad for me.  Youthful flings and mcnuggets.  So good and so bad.

Luther's last day of work.  He's giving up his work.  His income, part of his identity, his ability to produce, to take care of me.  It's all wrapped up.  He isn't choosing to retire.  The illness is forcing him to stop working.

My guess is he'll be relieved and excited about not working for about......... two to three months.  I imagine when you've worked for the last 45 years, you're ready to sit in the lazyboy and relax.

I'm treating this like he is retiring.  Although I'll still be working, I'm going to do my best to get him to do those things you equate with retirement.

He loves to fish.  I might have to hook the damn worm but a-fishing we will go.  Or at least we'll try.

<----My dad and Luther up at the cabin.

I fall in love a little more at the most random times.

I find that I fall in love with Luther a little more.  At the weirdest times.  I don't know why this is a surprise.  

He's so good.  He's so kind.  He's dying and he maintains this zen, southern cool attitude. 

I run around all morose or frustrated or insane and he let's me until I lose steam and run in to his arms that he can't hug me with and he leans in to me and says he loves me and then looks at me and says, "I wish I weren't dying" in the most matter of fact way and I start to cry... My heart just about explodes and I want to give him everything he deserves.

These grown up real things make me feel.  They send an arrow straight to my heart, piercing it deep and the tears just flow.  The love flows, too i guess.  Am I that unfamiliar with this feeling??  

I am being pretty melodramatic.  I've been crying on and off all day!  My poor customers.

My guy is six feet one, he weighed 230 when I met him.  He's sitting across from me right now talking to his sister.  It's like listening to Andy and Barney Fife have a conversation.  The word BED just became bay-ed.  He weighs 190 now.  His skinny little cricket legs crossed, all hunched over, laughing with his sister.  

I love these moments.  I love my guy.

Disconnected connections

I spent the evening at Luther's room.  He has three roomates.  It's a weird thing.  Not many curtains.  All having different experiences, together in one room.

Luther was the only one with a visitor in the five hours I was there. I did buy the two guys I'd met yesterday little get well sock monkeys.  They seemed a little surprised...

Modesty kind of flies out the window when you're in the hospital.  They proverbial open back hospital gown.  One guy didn't have a shirt on at all.  Come to think of it, neither did Luther.  Weird body function noises.  The Oscars on one tv, Modern Family on another, some sports thing on a third.  Connected somehow but really, not at all.

Some Marines came in to visit.  It was heartwarming although as I type this, maybe a little funny.  I have a pencil and a bumper sticker from the visit. Luther said another branch of the military stopped in earlier to visit, too.  The band of brothers.  More disconnected connections.

Luther's in again tonight.  I keep thinking he's just in for a little tune up. They're pumping him full of fluids, vitamins, minerals, food, medications.  He'll come back to me a little healthier.

Another quiet night.

The house is way too quiet...

Sunday - noon.  Luther's still in the hospital.  We were hoping he'd be out today but his blood pressure is sky high so he's in another day.  

Yesterday morning was weird.  Do I take him to the hospital?  How do I get him out of the house?  Who should I call?  I was the proverbial chicken with head cut off for about 1/2 hour.  I kept asking Luther if he wanted to go to the hospital and it dawned on me he wasn't going to say "Yes!  I'd love to go!"  

I had to get it together and figure this out.  I've talked about this in the past - how we have these weeks of routine where life seems relatively normal.  And then *BAM* - something happens.  The illness lurks around, lets us fall in to some sense of false normalcy and then it pushes Luther straight to the ground, looming over us, telling us, "Nope!  You got too comfy!  Remember?  You're sick!!"

The VA (Vets Administration) is incredible.  They have an "Ask a Nurse" line so I called.  She asked for Luther's info.  I heard her type it in and she pulled up his file.  She's in Iowa but she had access to his file within seconds.

After talking about what happened, she said to get him to the hospital.  She called ahead and let them know we were coming.  How awesome is that?

I called my sister and had a moment of hysteria.  Her husband answered and I was crying pretty hard.  The thing about my family - which I've talked about before - is there are really no questions asked.  No hesitation to help.  I wasn't sure if I could get Luther up to the car.  We have a detached garage and it's a million mile walk up an icy sidewalk to the garage.  Bob - the brother-in-law - said he'd be here in five minutes.  

He and my nephew were here in about three.  In hindsight, I probably could have gotten Luther up and out on my own.  But I don't think he would have gotten up and out on my request alone.  Seeing Bob and Will here made Luther realize he didn't have a choice.  He was going.

It was a long afternoon of waiting.  Being in the ER was just like tv.  Lots of commotion, noise, different people coming in and out.  We had lots of attention in the beginning but as the day wore in, we were left alone, waiting.  We figured his situation wasn't too dire or we'd have more people hovering around us.

I think it was five or six hours of being in the ER when they finally got us up to a room.  The good news is - relatively speaking - Luther's fine.  No concussion.  No broken ribs.  His blood pressure is still too high so they're keeping him in another day.

I'm being lazy this afternoon.  The house is quiet.  Feels weird to have Luther missing.  I've gotten used to him here.  I like him here.  

There are two other guys in his room.  Neither have wives or girlfriends or kids.  It's sad.  I was thinking of bringing each a little get well gift.  How lonely to be sick and have no one to worry about you.

I posted what was happening to Luther on Facebook.  I texted friends to let them know what was up. Instant information.  I debated whether I should.  Not every last thing needs to be told or shared.  But there's something reassuring about being able to let people know what's going on.  Asking for help if needed. Sometimes it's a little too instant?  Too.... hands off?  But in the end, the love and care and kindness that people share - even if it's just a quick online message - is nice.  It feels good.  Yesterday, it felt necessary.

Going to get ready to go visit.  I miss Luther.

Two a.m. scary thoughts (same day) Man down....

What a scare.  This is hard.  I type this in tears at 2:16 a.m.

Nice night out with friends; dinner at their house.  We had fun.

Got home, parked the car.  Luther went ahead of me.  I was texting one of the girl's I'd been out with so it was a minute before I got out of the car.

Rounded the corner to our place, the door was open.  I got closer, the diet coke we'd bought was scattered all over the floor.  I realized so was Luther.

He was on the floor choking.

This is our life.  This is it.  Super panic but try to stay calm.  Can you breathe?  Can you breathe?  I kept asking him, trying to hold his head to see if I could steady him.

Get me off the floor, he said.  Or gasped, really.  It's cold.  I have to get up.

We tried.  Several times.  He couldn't get up.  For lack of a better term, he was dead weight.  I got a chair, thinking he could use that to grab.

But I had to get his arms up to the chair.  Pull on his hips, get his hips square - he was all heaped in a tangled up mess.

Still coughing, choking, gasping for air.  I told him to kneel for a moment, catch his breath.  No, no, I want to get up.

He thinks he's bruised some ribs.  His whole side hurts.

We got him up two flights of stairs (damn townhouse!) and in to bed.  My trooper.

I can't sleep now.

Other than the day of the diagnoses, this has been officially the most scary moment so far.

Bracing for things to come.