Saturday, November 30, 2013


I'm a little worried.  I feel nothing.  Sadness mostly.  I'm not angry or freaked out.  Maybe that comes later?

Selfish, maybe.  I feel selfish for having these thoughts about me rather than him.

We had a brief conversation last night:  this hasn't really hit him, either.

I keep thinking there's going to be this moment, this revelation of clarity.  We'll gather our wits, get a list of things to do, suddenly things will be in focus.  Somehow, I don't think it works like that.

Thursday, November 28, 2013


Today is Thanksgiving.  It will be the first time we're with extended family since the news "broke."

One of the things I want to set as a precedent is making other people feel comfortable around us.  I'm not totally sure how to accomplish this.  Right now, the guy looks fine.  No wheelchair.  Sometimes a cane.  He can talk, breathe - at first glance, he looks healthy.  I suppose I don't want him (or me, I guess) to be treated different.  But things are different.  So how does that look from the outside?

My one and only Thanksgiving duty is to make the green bean hotdish and my mom said she'd do it this holiday.  I felt happy it was one less thing to worry about today; the gesture was sweet.  But I also felt a little weird since I want life to move along normally. Or at least as normal as possible.

This wasn't meant to be a diatribe on the new normal.  I was just thinking I'm a little nervous about hanging out with family.  It's not them - they're kind, supportive and frankly, once the initial "how you doing" chatter is done, Thanksgiving will proceed in the usual way:  drinks, games, food.

Today I'm going to focus on positive.  I've been trying to do that the past few days but it's amazing what the physical component of sadness is.  I don't even realize it until this oppressive elephant is standing on my chest.  Yesterday, I went about my day and in the middle of the day I just stopped functioning.  It was weird. I had to sit down and just... sit.   I work in retail.  We never sit.  It was a busy day yesterday.  But the buzz in the store couldn't keep me going.

Ok.  I keep rambling off my "what I"m thankful for" topic.  I have to go - 6:43 a.m. on Thanksgiving morning.  My sister is picking me up and we're walking at the Mall of America in the Walk for Hunger walkathon!  We've been doing this for the last 5 or 6 years.

Wednesday, November 27, 2013


I'm stuck.  Tired.  Stuck.

My best guess is I'm navigating through the five stages of grief:

denial, anger, bargaining, depression and acceptance

 and I'm in denial right now.  

I can't wrap my head around the fact the guy in my life is terminally ill and will suffer a pretty awful life as he dies.  I can't wrap my head around the fact I'll be in caretaker mode.  I AM in caretaker mode right now and it's going to get more intense.  It makes me feel incredibly, incredibly guilty that I even think like this.  

I go to work, I get so tired, I look at customers and think:  I can't even talk to you about this right now.  I want to go home, pull the covers over my head and sleep.

I've always, always been able to rally at work - been able to leave personal stuff behind and focus on work. I can't.  I am drained within hours.  I want to cry.  I feel that pressure behind my eyes.  My throat closes up. I'm a robot.  Well... not really.  A sad robot.

The thing is, in the front of my head, my robot logic part of me knows I'm not the one dying.  The logical part of me says I have to rally - I HAVE TO RALLY - and live.  He's not dead now.  As a matter of fact, he's up, walking, talking, breathing on his own.  Each new day is the best he'll be and I need to grab on to that and hold it, hold him, hold on to what we have right now.  Get unstuck.

I get it.  I really do.  Life's going to move ahead and I have to navigate through all this new territory.  I'm scared I won't be able to live up to what the future brings... but I will.  I just have to figure out how to lift this cloud of sadness, this weight of grief.  If it can't be lifted then at the very least, figure out how to live with it.

Tuesday, November 26, 2013

Fear and Loathing in Fridley

I'm scared of everything.

We got the official you're going to die from ALS diagnoses a week ago.

Many months ago, when we first heard about ALS as a possibility, we spent a couple days in disbelief.  My guy couldn't go home after work.  We went out and talked about death and plans and stayed up crying until all hours.

Everyone told us to stop it -- stop googling info, stop scaring ourselves.  When the guy told the doctor at Mayo it felt like this weirdness was spreading from his arms in to his right leg, her actual response was:  is this a google diagnoses?

So we did, we stopped second guessing, we stopped talking about it, we stopped thinking about paralyzation, feeding tubes, death.  We held on to hope that this would be an awful disease but not terminal.

Now we know it's terminal.

I can't see beyond this moment.  Right now.  I'm scared that he'll tell me he can't walk today.  That he can't swallow.  I'm scared when I hear him cough, he'll start choking and I won't know how to help him.  That he's going to fall down in the shower and I won't be there to get him up.  That he's going to start to die before my very eyes.

It makes me afraid to drive, afraid to work, afraid to make small talk with friends.

What do I do now?

Monday, November 25, 2013

Floating on the surface

I never let anyone in.  Ever.  In to my home, my life.  I like it that way.  On the surface, I have a good circle of friends, I have a great family.  I like surface.  Shiny, floating, the sun reflects off the surface.  It's nice. Easy.  You skim the surface -- maybe dip your toes in but never going too far to see what's underneath.

I let my boyfriend in.  Rather, he sort of kicked my door down and moved in.  One day we were dating and the next, he moved in.  That was March of 2012.

We were having our usual new couple issues along with my awkward letting someone love me issues.  I wasn't sure if he was "The One" -- I didn't feel crazy love for him.  Which led me to believe this time, it was different.  He made me feel safe.  That was a new feeling.

Do things happen for a reason?  Do people come in to your life for a reason?  I think about this often.  I've never had kids, I haven't been in a long term, live with me relationship for many many years.  Now here I am, here we are facing this illness.  If he weren't living with me, who would be taking care of him?  Is this my role now?  Is this why he's here?

I could ask these questions forever.  It is what it is.  He's here.

I feel guilt.  Scared.  Shut down.

Guilt because we've together less than two years and I think this sucks.  This happens to couples who've been together for a life time.  We never worked out those usual new couple issues and they're lurking beneath the surface.  I'm still pissed off about a few things we never got to resolve and now, he's dying.  Guilt because I wonder why this is happening to me.  I finally, finally let someone in after so many years of being alone, of being unloved, of not allowing myself to be hurt and this is what happens.  Guilt because I'm not dying so I shouldn't feel so selfish.

Scared because well, you know.  ALS.

Shut down because I can't even think of what's next.  I can't allow myself yet to see the future.

I want to be strong, I will eventually be strong.  For now, I'm closing my eyes.  I'm up north, at my parent's place.  Another safe place...  It's a hot summer day.  I'm on a raft in the water.  The sun is warm on my skin, I hear the waves lapping, the wind in the trees, voices far away.  Floating on the surface.  Time stands still.

Sunday, November 24, 2013

Falling down

The first time he slipped and fell - well, not really a fall but a slide - in the shower, we were in a hotel room on Veteran's Day for a romantic Monday night.  I know - Monday and romance don't seem to go together.  But you take what you can get.  It was a free stay with a free dinner (he's a veteran), so what the heck?

He planned on sitting on the edge of the tub to wash his hair and instead, slid down the shiny slippery ceramic side.  In the other room getting ready, I heard a bunch of squeegee type noises along with flopping coming from the bathroom.  No cry for help but it didn't sound right.  

Water was rushing over him and he was flat on his back.  There was a safety handlebar but he wasn't strong enough to lift himself up.  It was slippery pig time... I wrapped my arms around him and tried to pull him up but he was wet, slick, soapy.  It took some doing but we got him back up to the side and we finished the shower.  This was not sexy time shower.  This was functional, get 'r done shower.

My boyfriend was just diagnosed with ALS.  Lou Gehrig's disease.  This is from the ALS Association:

Amyotrophic lateral sclerosis (ALS), often referred to as "Lou Gehrig's Disease," is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.

Note the death part.  The totally paralyzed part.  This is scary shit.

Tonight was another small fall in the shower.  He didn't take the tumble, the shower head did but it was out of his reach.  I was upstairs and heard this weird ghostly cry.  I thought it was the tv at first.  I heard it a couple more times and realized it was him.  

He was standing in the shower, water everywhere.  The shower head is way up high and he can only lift his arms about middle of chest high.  He had some device to stick on the side of the shower to hold the shower head but it unstuck and fell off and now the shower head was spinning around uncontrollably.  

He sat down on his new shower bench and I washed his hair, his armpits, his boy parts, his legs.  Rinsed him and then dried him off.  Helped him put on his pj's.  

Falling.  Free falling.  I fall for you.  Falling in love.  Doesn't it sound artful?  Poetic?  I think of a leaf, falling gently to the ground, the air underneath, spinning it round and round.   My life has been turned upside down and I feel like that leaf - I'm spinning around.  Turning slowly, insanely slow.  When will I hit the ground?

And yet, this falling is far from pretty.  It's ugly.  Random.  Unfair.  It's a failing, stumbling fall.  A fall from grace.  From normal.  

I've fallen and I have to get up.