Forever love, one day at a time

This was a comment left on one of the posts.  It's from a friend of my parents.  It's sweet and touching and a reminder that each of us faces challenges every day.  It's how we choose to deal with the challenges that matter.

Jim NJanuary 19, 2014 at 7:56 PM

I hope you two got to the south and the sunshine. It is a whole bunch easier walking in the sun if the snow isn't up to your ankle.
Walking is a little challenging for Paula. She is "on my arm" pretty much all the time we are out of the house. It gives me a chance to squeeze in my elbow and remind us both that we are traveling as a pair now-a-days. We had one passerby who didn't speak english make a special effort to say he was glad to see us as a committed couple. That is one thing you two can do. Walk arm in arm and proclaim to all around, that he (she) is mine and I'm proud of the fact.
Don't feel you have to hurry back north. Our snow will last for quite awhile.''

I have had people ask if I was going to leave Luther.  Would I stick with him?  We've been together less than two years (it will be two years in March).  Even he gave me the "out" when he was first diagnosed.

I've thought about it.  It wasn't a serious conversation in my head but the thought crosses my mind at times.  I feel guilty about even having the thoughts but they are there, lurking about.  I think about being 52, how long will the illness last, when will he die, how old will I be when I'm single again?

When I met Luther, I'd been single for a long, long time.  10 years or so.  My friends and family know of my dating adventures.  I was ready to put those adventures away when I met Luther and start a new kind of adventure with him.

I want that forever love.  I want to be with someone as I grow older.  I don't want to be alone again.  And I will be.  I worry I'll be nearing 60 on my next, new dating adventure.  It makes me feel guilty and, frankly, bad when I say this out loud.  I want Luther to be here, dammit!  

I don't often think about my future in these terms.  It is what it is -- none of us has any guarantees. (Oh these cliches!!  They keep coming more true every day.)   These days, I face what's in front of me and shove these kinds of thoughts way way back.  

Luther is my forever love, right now.

Thinking about zingers

Back from vacation - 4 days in Vegas.  It was warm and wonderful.  Flip flops!  Lunch outside.  Seriously, the best potato I've ever eaten.  It's the little things, right?

But I had these moments, a lot of moments, where I was sad, tired, down right pissed.  I feel ungrateful saying this out loud.  My boyfriend, my terrific, handsome, super nice boyfriend bought me this trip for Christmas.

I've been thinking a lot about zingers.  Not those delicious chocolate twinkie like things you can only buy at the gas station.  But the small jabs we take at each other... the passive aggressive way we have of handling our frustration or anxiety or the fact we're pissed off with someone but we don't really want to come out and say it.  Things like, "you're wearing that?  Oh, no, it looks really comfortable."

I was in a zing zone the day we left for Vegas. We walked to the car, my car which doesn't stay in the garage and it was covered in inches of snow.  We forgot it snowed.  I had on cute shoes.  I realized, in that moment (one of so many moments) things aren't the same.  I had to run back down to the house (the garage is detached), put on my winter boots and get ready to shovel and scrape because my guy can't.

While I was down getting my boots, he got in to the warm car and waited for me to shovel us out.  I was pissed.  I had to put the suitcases in the trunk, scrape off the windows, shovel out the car.  It was a lot of work.   Work that we used to do together and now, I have to do alone.

I wanted to zing him.  I had a million things in my head to zing out.  Warm enough?  Want to double check if you forgot anything so I can walk back down to the house?  Let me just finish cleaning out the car, don't mind while I work around you....  I was cold, my sweater got wet, this was not how I wanted to start out the vacation.

But it's how it happened.  I got in to the car, he was quiet.  I slapped a big 'ole smile on my face and said I was so excited we were leaving!  Inside I wasn't excited.  My heart was frowning.  My hands, correctly placed on the wheel at 10 and 2, were gripping the wheel really really tight.  I wanted to let a zing out in the worst, worst way - as if letting it out would lighten my load.  Why is it an automatic reaction to say something shitty to make me feel better?

A funny thing happened -- as I kept smiling, my tension started melting.  We made small talk.  We were on the way to Vegas!   Warm weather, time away from work, nothing to do but eat, hang out.  Being nice made me feel better.  Imagine that.  It was a zing free trip to the airport.

Now, I just had to bury that nagging feeling that this was just the first of many zing moments that I'd be working really hard to turn in to zen moments...

Note to my mom:

I got my flu shot.

The sadness of illness

9 pm - Thursday night.  My cat is curled up next to me, which she never does.  I think I've ignored her.

Just finished helping Luther shower.  Before tonight, I only had to help him dry off. Tonight, I had to wash his hair, wash his stuff - boy parts and pits.  This is new.

I clean the bathroom while he sits in the shower and gets wet.  Then - to work washing him off. 

It's ok.  I'm a good height for him - he flings his hand up on my shoulder and I can get his armpits dry. When I was looking for love online, this wasn't really in my thought process.  "Short, mid-western nice girl, perfect height for tall guy to get his armpits dried off..."

It's a connecting moment, too.  Not sexy shower time. It's more practical than that.  The bathroom is super hot, he's got the space heater going, the hot water going.  He's always super cold. I'm all menopause and hot and it's a drag to be all steamy and damp so I'm drying him off in record time.  

We had our first ALS support group on Tuesday.  It was snowing so the group was small.  Only one guy in a wheelchair who's had this for 2 years.  There was an older man - 70's - with his partner.  A younger couple with toddler age kids.  Another couple our age.  These folks were like Luther; they'd been recently diagnosed and on the surface, outwardly, look fine.  

As you sit with them, talk with them, you realize each person isn't fine.  Like Luther.  They talk different. Move different.  Different is the new normal.

At the group, we did yoga.  It was great!  Both Luther and I have become pretty sedentary.  He's always tired and honestly, I am too.  This was adaptive yoga, developed by a man whose been paralyzed from the chest down for 25 years.   It felt good to touch Luther, help him stretch, sit up straight, help him feel like he CAN move.  

I realized a couple things:  first, how important it is for me to not be so tired.  As time goes on, it will be more than helping him shower.  I *HAVE* to change.  Second, we've kind of fallen in to this stupor, this sadness of illness.  We pretend it's all ok.  Maybe it's not even that top of mind or that prevalent... we just go about our day.

Although I want life to feel normal for Luther - and for me - I also know that each day is precious.  Each day he can talk to me, that we can walk together, is a precious commodity. 

We say cliche things like "today is the first day of the rest of your life."   Appreciate each day as if it were your last.  Live like you were dying (isn't that a song?).  But I don't consciously go about our day with these platitudes forming my choices. 

Instead, I have these moments - like at yoga - where I realize I need to flip that switch.  Find the balance between what feels normal and getting off the couch and digging in to the bucket list.  Or really, just appreciating the time we have together.

Random thoughts...

Last week I felt scared.  Uncertain.  I worried about everything.

This week, warmer weather.  Warmer thoughts.

We had a good weekend.  Out with friends, family on Friday and Saturday night.  Luther actually had a "guy" date on Sunday - met a friend for lunch.  I worry about the energy management.  Is doing so much going to wipe him out??  Or is it good to be up, meet friends, feel back to normal?  

I like to keep friends close.  That sounds weird because I like being with friends.  What I mean is it's a good thing to let them in, let them get used to Luther and how it looks to live with ALS. See the stages, in a way??

He looks fine, he's walking, talking.   He's lost 100% use of his shoulders and upper arms.  90% loss of his hands.

At times, I want to keep him sheltered away from the world, keep him safe, keep him relaxed.  Other times, I know it's important to feel as normal as possible.  Especially while he's still walking.  We're going to Vegas this weekend!   We're both looking forward to time away, time together.

Tomorrow, we go to our first ALS support group at the U of M.  I'm a little nervous about it but mostly excited to find new connections.  Get more information.

I was thinking about going out of town for a weekend this spring.  A girls weekend away.  That "me" time people keep telling me I need to be sure to take.

What I realized, though, is I can't leave Luther alone.  Right now, we have a routine.  Things have fallen neatly in to place most days.  Who fills that place if I'm not here?  It feels weird to ask someone to come over to check on him like he's my cat.  

We'll see.  I'll worry about it when the time comes.  That's sort of my mantra these days... enjoy today, focus on today.  Although we can plan for some things, I'll worry about most things when they actually happen.

How much can we handle?

I'm not a religious person.  Faithful, yes.  A Christian with questions, I guess. I believe in redemption.  I believe in Jesus.  I don't believe God chooses to look down from the clouds to earth and deem some worthy to save.  Life is too random for that.  I can't reconcile that kids are molested, people are killed for no reason, wars start and God would have a hand in that.  I think mankind just runs amok.

Luther is one of the kindest, most positive, generous men I've ever met.  His son died.  Now he's terminally ill.  I think, why doesn't this happen to someone who "deserves" awful things?  But I know it doesn't work like that.  Life is random.

I tend to think people like me - who are not devout or committed to faith - turn to faith in times like this.  As if I'm going to find some answers.  Some comfort.  Someone to "talk" to in the middle of the night.  I don't think God sits in a heavenly armchair, an elusive therapist, listening to my questions, concerns.

My cousin posted this:

God always gives us more than we can bear  <---- click this

Lots to think about.

At the moment, on a rare Saturday off, it's time to do laundry, clean the living room and think about God.

Well, things could be worse...

Our ears are cockroach free.
http://worldnews.nbcnews.com/_news/2014/01/10/22255137-australian-man-tries-to-remove-cockroach-from-ear-using-vacuum?lite=