Fuckity fuck fuck fuck fuck fuck it all

My boyfriend is going to die.

I'm going to watch him die.

He'll become paralyzed.

I will watch as he freezes.

Fuck.

Sitting alone on a Friday night

The guy is out.  I worked late and came home to an empty house.  I'm glad he's out - it means he's enjoying time with friends.  Distracted from the terminally ill elephant in the room.

It's weird, this life we've weaved together.  I've been single and haven't lived with anyone since my divorced in 2000.  Living alone for 12 years is a long time.  Sure, I've had sleep overs and have spent consecutive nights with people!!  But I've never meshed my life with someone else's.  I've done what I want, when I want.

Now I have to think of someone else.  That sounds like a shitty thing to say but it's been true.  No kids, I don't have any plants.  I have a cat.  I've looked out for me.  And my self-sufficient cat.  This isn't to say I'm a selfish person.  While I can be a loner at times, I'm a good friend.  A good sister.  A good daughter.

Now I have to think of someone else multiplied by a million.  What a crazy thing.

We saw a host of doctors and therapists yesterday.  It was overwhelming but great; it was awesome to see how interconnected everyone on the staff is.  The things we have to do.  At times I can't even get a load of laundry from the washer to the dryer.  How can I live up to the task of this disease?  I guess you just do it.

Alone on a Friday night - thoughts swirling around.   Time for bed.

can't won't don't shouldn't -- negative, contracting, closing down

I haven't written anything because I am trying hard not to feel anything.  Writing makes things real.  I'm not interested in too much reality right now.

Surface, floating on the surface is good.  Skimming.

Doing the limbo

We went to Jimmy Buffet last night.  A normal night out.  Some things were difficult:  it's hard for him to turn the keys in the ignition, maneuvering the stairs, up and down our seats, leaving a little early to avoid the crowd.  All in all though, fun to go out.

Since there is no cure for ALS, no treatment, it's a weird waiting game.  What's the next thing to happen? The next muscle to go?  Will he choke?  Fall down the stairs?  Fall down at work?  Stop being able to talk? Until the next loss, we just go on.

Irony in vitamins

My man bought these vitamins,which first off just proves his optimism that he's taking vitamins!  And second, the subliminal message....

Bucket list #1

The first thing on his bucket list?

Build a gingerbread house.

This is a good man.

My heart cracked

My boyfriend, Luther, is awesome.   Smart, goofy, mellow, patient bordering on saintly.  Plus he really digs me which is a huge bonus.

We haven't known each other long in the scheme of things:  two years this March.  We met online.  An internet love story.

I am your typical Minnesotan.  If someone says, "hey!  It's a nice day today!"  a Minnesotan's response is:  "you betcha, but didn't you hear it's going to snow?"   We can never let things just *BE*.  We can't savor the now, the present, a moment of happiness because right around the corner is something that forces us to buck up or hunker down.  We're a hearty lot... always pulling ourselves up by the bootstraps, shaking it off and putting one foot in front of the other.

Luther, on the other hand, is a typical southern boy.  A good 'ole southern boy.  Check him out!  He's Colonel Sanders good lookin' cousin!  General Sherman.  He should be sipping bourbon on a porch someplace warm.  Nothing phases him.  He is somewhat amused by my chicken little, sky is falling neuroses.  He waits patiently by the door as I scurry about looking for my missing shoe, my wallet, my lipstick.

At times, this disparity between mind-sets infuriates me.  I've mistaken his zen cool for apathy.  I've begged him to be more emotional, more communicative, more open.  Then I have to take a step back and think, really?  Do I want to be in a relationship with someone like me??  Nightmare.  We'd never get anywhere on time.

I can't say we're a yin/yang thing.  That implies some kind of awesome interconnected spiritual couple.  I'm a handful.  He's really quiet.  It's hard work meeting each other in the middle.

Dealing with this ALS diagnoses has put a spot light on our differences in the way we view things.  He's been even more quiet.  I can't even describe his attitude because there isn't one.  Avoidance?  Denial?  Is this a stage of grief?  Grieving his mobility, his future, his life?

We haven't really talked about any of this.  I've brought up a few things:  traveling, bucket lists, when he can't move, how do I pay his bills?  Last night, I asked him what he needed from me.  His reply:  He needs me to touch him more.

My heart cracked and I felt a little light shining through the cracks... I realized in that moment I love him and I will take myself out of this morose, stuck place in order to make the rest of his life full of affection and happiness and as much joy as possible.