Pick a cliche

Feeling the immensity of ALS a few nights ago but the last couple of days have been mundane, back to "normal" and for that, I'm grateful.

I'm upstairs, watching some goofy reality show and he's downstairs, hanging out.  We're leaving soon to get his haircut, I'm going tanning (I know!  tanning...) and then we're getting pedicures.  Important, mundane stuff.

Life moves on whether I'm hiding under the covers or fully present.

So pick your cliche of the day:

Today is the first day of the rest of your life.

Live today is if it's your last.

Dance like no one's looking.

Be happy for this moment.  This moment is your life.

Cherish yesterday.  Dream tomorrow.  Live today.

Life is like a bicycle, in order to balance, you must keep moving.

Your struggle is simply a part of your story.

Tough times don't last, tough people do.

We must let go of the life we have planned, so as to have the life we have waiting for us.

Turn your face to the sun and the shadows fall behind you.

Just keep going.

Pick your cliche.  There are 1000 more.  Whether it comes naturally or I have actually say it over and over and over until it comes true - TODAY IS A GOOD - WAIT!! MAKE IT A GREAT DAY!!

My last cliche of the day:  fake it 'til you make it.....

Overwhelmed, under the covers...

The life I had is gone.  The life I thought I was going to have will never happen.

When Luther got sick, I questioned whether I'd be able to live up to this illness.

Tonight, I don't know if I can.

Tomorrow, I will, but tonight, I don't know what to say, what to do to make this any better.  How do I make Luther feel better?

I got in to bed with Luther tonight, his little twin hospital bed and put my arms around him.  I started to cry and then realized he couldn't turn over to face me.

He couldn't even reach down to touch my hand so I had to stop crying so he wouldn't feel any worse.

I get it, I understand that aren't any guarantees.  I know there are people worse off than us.  The world doesn't stop because Luther's sick.

We have a zillion decisions to make.  Some are financial. Some are very personal.  Some we can't make alone and some we don't want to share.  Much of this hinges on the future -- a future that is cloudy and uncertain.  A future I want to be bright and happy and full of things crossed of the bucket list.  How do we balance financial stuff and bucket lists?

Plus I can't cook.  That's been on my mind.  How do I keep Luther fat, staving off more muscle degeneration if I can't figure out how to menu plan.  Popcorn for dinner is ok with me.  It's like sudoku or quantum physics.  My fridge becomes a big black hole.  I've been trying to make slow cooker chicken and dumplings for a week but I have to time it just right to be home an hour before it's done so I can throw in the dumplings.  Just typing that made my brain freeze.

That was a stupid sidebar, I'm trying to take my brain off this emotional tsunami.  Ugh.

What I realize the most is how much my life is changing.  How much I have to change.  How much I have to take on in order to create a good life for Luther.  Tonight I bugged him, I nagged him, I brought up some really tough issues.  Stuff we are both responsible for but I put it on him.  It wasn't fair but I did it out of being scared, feeling insecure.

I think it's time to get under the covers.  Just for tonight.  Pull them over my head and hope to keep the ALS demons at bay.

Tomorrow's a new day.

Some days it's hard to get up.

Things I miss. Things I used to take for granted. Things I try harder to keep in my life that I used to take for granted, so I don't miss them anymore...

I started making a list of things I miss but that was too sad.  One is having the option to sleep in the same bed as my husband.

I just tucked him in.  He has a hospital (twin) bed that continuously moves; I guess once he's in bed most of the time, this prevents sores.

We live in a 3 level townhome right now and he's in the basement.  That's his 500 square foot world.

Our room was up on the very top but now, we never use that.  I sleep on the couch on the middle level so I can hear him.

Truthfully, I slept on the couch a lot when we were able to sleep together.  I don't have the option to join him anymore unless it's a quick snuggle.  Maneuvering in a twin bed is tricky.

He goes to bed really late.  Before, he used to be able to get in to bed by himself.  Now, I have to pull up the covers.  If the covers come off him, he can't get them back up.  :(  

Luther can't reach out and touch me anymore.  No hugs.  No holding hands.  We don't have a couch or loveseat downstairs so we don't sit together.  He's in his chair, I'm in mine.  Edith and Archie-like.

At times, I actually have to remind myself to touch Luther.  Think about it.  Your day flies by and have you made any human contact??  Hugged your kid?  Held hands with your partner?  Simply reached out and touched someone's arm as you talked?

What if, one day, the person you are in love with couldn't touch you anymore?   Would you regret not being more affectionate?

So I've been stepping up my display of affection game, which is actually a little difficult.  I hang out with a group of friends who love to hug.  I am not a hugger.  Well, wasn't a hugger.  At least now, I don't stand, arms stick straight at my side while someone attempts to hug me.  I've gotten a little more gumby like, more flexible and actually do a 1/2 hug back.

With Luther, I have to lift him up out of his chair every so often and I like wrapping my arms around him, giving him a bear hug.  It's hard sometimes to lift him up.  But once we're both up, I take that extra time to lean in to him, just be with him for a minute. Sometimes I take his arms - heavy and awkward - and put them over my shoulders so he can hug me back.

Usually when I brush his teeth, it's pretty utilitarian.  Get 'r done.  Brushing someone's teeth is a pretty intimate act.  I don't particularly like to do it and I'm guessing he doesn't either.  More and more though, I remind myself to slow down, rub his arms, give him a smooch.

It's those things you take for granted when you have them.  Like always making sure we slept in the same bed together, which I didn't always want to do when we could because I was too hot or he snored or I got jimmy legs.

I miss the snuggle.  Touching toes in the middle of the night to make sure he's there.  The little things that keep you connected.

It's been calm far too long... (updated this morning)

So tonight, Luther said he can't get out of his chair without help.

His chair is an old, leather chair, cracked and kind of a typical man-cave comfy thing.

But he's been on the hunt for something new, a lift chair.

Earlier tonight, we went to look at lift chairs and it was eye opening.  Super helpful to get him out of the chair.

I knew we were on this path -- he's been having a harder time getting up.  I have to help him much of the time or when he wants to do it himself, I hear him struggling in frustration.

A little background on the chair:  this chair is his life.  It's where he spends 90% of his day unless he's in bed. If I'm home, we plan to get out when we can.  And my family is good with getting him out and about.  But most times, he's in his chair.

Once we got home from the furniture store, he admitted he can't get out of his chair anymore.

Now, I can leave him at home for a few hours.  He still has limited mobility.  If he has to use the bathroom or get up and walk a few steps outside, he can.   Well - maybe not now.

What to do if he can't get out of a chair?  Can he be home alone?

UPDATE:  So it seems to be just the chair he can't get out of right now - it's too low.  He can still get out of bed, out of a higher chair.  So he'll have to sit in the office chair when I'm gone - not so comfy but I'm usually not gone too long....  Getting the lift chair STAT!!

Just when you think things are so bad, you see a guy with no legs and one arm at a Pearl Jam concert....

This idea was swirling around in my head last night at the Pearl Jam concert about how yukky Luther's life is heading.  Why a thought like this at a super excellent concert with super awesome seats?

Because he's confined to a wheelchair and it was hot and he hadn't moved in a few hours, his hands were cramped up and he was wearing these polyester sweatpants and sort of stuck to the seat.  I'm not sure he was thinking about this stuff:  he was busy rocking out in his own way.  I was just the worried wife.

As we left, waiting for an elevator, a drunk guy told us to take the stairs because we were hogging the elevator, which added to my mood.  

At that moment, this guy rolled up on a skateboard.  He had no legs and one arm.  He and his friend had not heard the drunk guy - he rolled up right after that.  But he and his friend were actually talking about taking the stairs to get down faster.  

A guy with no legs.  One arm, wheeling himself around on a skateboard.

I had to laugh - it was one of those inside my head "geez Lynn" laughs, not a funny, out loud laugh.

This happens to me every so often and it gets me to thinking about serendipity or fate or God's angels.

You get to feeling life is unfair or you get in a funk when something, someone crosses your path and makes you see things in a different light.

This was one of those moments.  Luther is heading toward total immobility.  It's profoundly affected our lives and quite frankly, I get to feeling sorry for us.

And then I see a guy with no legs and one arm - at the super awesome concert - getting around on a skateboard.

During the concert, Pearl Jam brought out Dr Jakub Tolar from the U of M Hosptial to talk about EB - which has a really long official name - a disease that causes the skin to be so fragile, it blisters and tears.  The U is leading the way with treatment for EB.     http://ebresearch.org/what-is-eb/

As the band brought a kid with EB up to the stage, that stopped me for a moment, too, and made me think about the good life Luther and have.

The concert was more than fantastic, I was with people I loved.  It's all about perspective.  

Just in case you want to enjoy a little Pearl Jam, click the link below!  

https://www.youtube.com/watch?v=Eo-UKCxCglg

4 a.m. - can't sleep. What's bugging me?? I don't have ebola...

I haven't had a bout of insomnia for a while.  Quite the opposite - I end up sleeping a lot, random naps throughout the day.  So what's on tv at 4 am?  Doomsday Preppers.  Have you ever watched that?  I'm in no mood for crazies at 4 a.m.  I could watch the news but it's all ebola.

I'd prefer not to watch anything about ebola.  What an overwrought moment.  I heard something that in an election year, the party in power wants to look like it's in charge, so they're creating all kinds of new rules.  The party out of power is creating chaos in order to prove they should be in control.  Pick a thing to keep our focus away from anything that really matters - oh!  hey!  ebola!

Anyways - here I am, all cozy and tucked away in my ebola free living room.  4 a.m.

I went to my first ALS caregiver support group.  Maybe that's on my mind?   The weird thing about ALS is there's no predictable progression.  Unlike ebola, where you get a fever, you get nauseous, you have chest pains and coughing and then you start bleeding from your eyes.  It's a fairly "set" progression of symptoms.

With ALS, you just don't know.  For some, it affects mobility (like Luther).  For others, it affects speech.  For some, the deterioration is fast.  Others, it's a slow, uncertain loss.

So here we are, a group of men and women caring for our loved ones and we have no touchpoint, no place in the progression of the illness to say - oh yeah, I totally know what you mean by that symptom.  I understand how you feel because that's what happened to us.  Instead, it was more like - oh, your guy can still walk but you have to aspirate him and he can't eat?  My guy can't move his arms but he can talk.  Your wife isn't in a wheelchair yet but needs a breathing machine?

The main thing we had in common is that we were all really sad.  Really really sad and really really tired.   I noticed each one of us was holding on to our story by a thin, scraggly string of hope and strength and as we told our story that string just unraveled.

I noticed the desperation in each person's story.  The loss of control, the loss of a life that was supposed to be a certain way.   The loss of self, of time, in some cases dignity.  Perhaps even loss of compassion as our lives become more consumed by ALS - more consumed by the act of care giving.

What we gain is guilt over having these feelings.  I mean, we're not dying, right?  How could I be so selfish to think this is a drag?  That I'm tired?   How can I say I'm worried about my future when - at the very least - I have a future?

Certainly, the group is a place to say things aloud we keep deep inside.  Share the feelings we can't say anywhere else, to anyone else.  Our commonality is we're caring for someone who has a very uncommon disease.

It was a heavy hour.  I felt like I needed a support group for the support group.  It shook me up.  In both good and not so good ways.

Good:  I've said this before, but Luther is pretty awesome.  More and more I realize how lucky I am to have him.  He is open and he listens.  He thinks about me and he hasn't let this suck him down. I'm so lucky we have the VA, that I don't have to keep working full time, so incredibly lucky we have the support system we do.

Not so good:  I realized the challenging road we have ahead.  It's hard watching someone lose himself right in front of you.  I take nothing for granted anymore and it's tiring being on high alert all the time.

Good:  I'm supremely lucky I have the family I do.  I stopped at my mom and dad's house on the way home.  Renovations have started.  Have I told you? We're moving in with them.  Hopefully before the snow flies.  We live in a three level townhome that is impossible to navigate.  So mom and dad are making their house accessible and we're moving in to the basement.  The garage leads in to the basement so we're basically taking over the lower level.

The fact my parents have stepped up - no questions - knocks me over.  I said that to my mom tonight: I'm overwhelmed at their generosity.  She said, yeah, this renovation is a big deal but we're family and that's what families do.

I don't feel super sleepy, but I'll give it a whirl.

You're Not You

A movie came out today called "You're Not You" with Hilary Swank and Josh Duhamel - an actual Hollywood movie with movie stars about ALS.

https://www.youtube.com/watch?v=SE0m-N-b1VA


At first I was super jazzed about it.  What awesome recognition for the disease, I thought!  But I wonder why use an actress?  Perhaps I should reserve judgement -- I like the actors.

Here's a review of the movie:

http://variety.com/2014/film/reviews/film-review-youre-not-you-1201326153/

Luther really wants to see it.  He wondered if he could sit through the movie?

If you see it, I'd enjoy knowing what you think.   I'll post our thoughts about it after we see it - hopefully this weekend!!

Updates on a couple events

September was full of support and celebration!  Early September, we had a fundraiser dinner at a local restaurant - Adagio's Pizza Factory.  We had the walk for ALS and then, at the end of the month, my parents threw us a wedding reception.

One of the things that resonates with us is the support and love we feel from family and from friends - whether it's online friends, my parent's friends, my close friends - it's amazing.  We can't say it enough: thanks so much to everyone.

Fundraiser / spaghetti dinner update: 

We wanted to let everyone who came know you helped raise over $1300!!  It was an amazing night. We split the money between to our walk for ALS, the MN ALS Loan Closet and set aside just a little toward our own fund we don't think too much about right now - his end of life care.

Ed is a 20 year air force veteran. ALS is one of three diseases (Agent Orange and PTSD are the others) considered "service related" so the VA covers muchof his care. I can't imagine the financial crisis we'd be facing if it weren't.

We felt it was important to make sure some of the money you helped raise specifically goes to the local ALS Loan Closet.

They assist those who cannot afford the equipment needed to live a more comfortable and productive life.

My sister was the ring leader in getting everyone involved.  We had a bake sale; she recruited a bunch of talented folks to bake away.  A big shout out to Adagio's Pizza Factory in New Brighton, too!

ALS Walk:

Thanks to all of you, we raised $2940 for the walk!!!  

The Walk for ALS was a wonderful day.  Luther had a little emergency room scare two nights before the walk so I almost bailed... but my super-hero sister rallied us to get out and go.  And although my super-hero husband was still feeling icky the night before, on the morning of the walk, he felt better and rallied to wheel.

We met up with friends, family - it was a sunny day - and there were 1000's of other people walking who's lives have been touched by ALS.  Another heartwarming day.

Reception:

My parents have lived in the same neighborhood for 40+ years and they're still friends with their friends from high school (in a few cases, elementary school!) so I've known these people most of my life.

At first, I didn't want a reception -- our wedding was small, it wasn't our first wedding, we'd already asked for so much toward the ALS Walk -- it seemed like too much.  But mom and dad put together a fun day and it was good to see so many people I hadn't seen in a long time.  They got to meet Luther, I got to catch up and it was another day of letting in that love and support.  How can we go wrong with that!?

Below is a pretty cool link of a family who's living through ALS.  The man, a Pittsburgh firefighter, has ALS and was on the Ellen show.  One of the comments his wife makes is that they get to feel the generosity of their community on a daily basis.  I have to say we agree!!

http://www.wpxi.com/news/news/pittsburgh-firefighter-battling-als-will-be-ellen-/nhbF5/ 

No news = good news

3:22 am - can't sleep.  There's nothing crazy or scary on my mind.  Just one of those nights.

Talking to Luther earlier tonight, we agreed that he's been in a holding pattern for a while.  Things are good.  Is it calm before the storm?  Don't get too comfy.... who knows what ALS monster lurks around the corner?

I can't even drum up a little angst, though.  I'm so happy to have this time with Luther.  I've cut back my hours at work and it's been a treat to be home with him.

I have to laugh though.  I'm NOT a homemaker at all.  The house is generally in disarray.  A happy mess but messy nonetheless.

I do not cook.  I'll rephrase:  I haven't cooked.  For years, it's been Lynn, party of one.  Popcorn was dinner.

Today I actually took a list to the grocery store!!  Is this what people do!?  I wrote the page numbers down from the cookbook so I'd remember what recipe to go back to.

Now I have this time on my hands, I've turned in to this "what's for breakfast/lunch/dinner" chick. I've turned in to my Grandma!  Constantly thinking about the next meal.  And all these dishes! What's with that?  Dishpan hands.

It's all good.  Although Luther's not always super excited to be on the end of the my cooking experiments, I'm pretty sure he's happy to be eating together, hanging out more.  I'm less the robot caregiver, rushing to work, rushing home after a nine hour day just to tuck him in bed.  Now, I get to be his wife.

Haha!  I was going to say girlfriend!!  So much has changed over the last year.  Luther's given me so much.  For such a long time, I questioned Luther's character, I was unsure we were a good match, I didn't trust him.  What I realized is that I didn't trust myself.  I didn't want to be in love with someone who was so different than me.  And later, as we tried to figure out what was wrong with him, I didn't want to be in love with someone who was sick.

I was fighting pretty hard to keep this wall around my heart so I'd never be hurt but Luther just chipped away, sad little brick by brick.  He's always here, he's so steady and even-keeled and open-hearted.  Luther's keeping me steady and he's finally created a little space in that wall and it feels really really good.

As much as I hate that he's sick and he'll be taken from me sooner than we planned, everything that's happened has changed me so much and I think in a good way.

Sure, I'd give a jillion bucks to go back and have him healthy and me still a little walled up.  Luther would've eventually chipped those bricks down; it just would've taken a little longer.  But here we are.  I know there will be tough days ahead but I don't look down that road.  Instead, right now, at 4 in the morning, I feel grateful and happy and a little bit lighter with Luther in my life.