Sunday, June 29, 2014

Good News / Bad News

So the good news first!

Luther and I are getting married!!    Saturday, July 5th - which is, weirdly, my dad's birthday.  It's pretty much a last minute thing but we figured we had everyone trapped at my parent's cabin all at one time and we'd just get 'r done!

My sister, Ann, became ordained online and she's going to officiate.

Fingers crossed it's going to be a sunny day - I don't remember a rainy 4th of July weekend in years.  And then on to the pontoon parade where the theme this year will be "JUST MARRIED."   (Past years pontoon parade themes have been:  Christmas in July, Pirates, Sock Monkeys)

My brother's girlfriend, Noreen, sings at weddings so she's been gracious enough to say she'd sing at our wedding.    <---- the song

At first, I wanted something really casual and simple - which I think it will be - but I realize we needed to make it feel like a wedding!  A celebration!

Ben and Emily - my youngest niece and nephew - will walk down the deck together.  Will and Molly will walk down together.  I think my mom and dad will walk me down.  My best friend, Jen will be there!

Dad is going to do a reading   ------------->
It's the Corinthians reading, pretty traditional for weddings.  He asked if he could do it and that made me happy and it got me to thinking we need to make it be like a real wedding.  Wait!  This IS a real wedding!!!

I found some other passages I like that I've asked each niece and nephew to read:   something short, something I like that is close to my heart and I'm hoping having the kids involved will make it nifty for them to be a part of our wedding.

We're doing our own vows.  I've got a jillion things swirling around in my head (imagine that) -- there's so much I want to say to Luther!!  I did find a poem I really really liked:

Love by Roy Croft

I love you
Not only for what you are,
But for what I am
When I am with you.

I love you,
Not only for what
You have made of yourself,
But for what
You are making of me.

I love you
For the part of me
That you bring out;

I love you
For putting your hand
Into my heaped-up heart
And passing over
All the foolish, weak things
That you can't help
Spider's Web Dimly seeing there,
And for drawing out
Into the light
All the beautiful belongings
That no one else had looked
Quite far enough to find

I love you because you
Are helping me to make
Of the lumber of my life
Not a tavern
But a temple.

Out of the works
Of my every day
Not a reproach
But a song.

I love you
Because you have done
More than any creed
Could have done
To make me good.
And more than any fate
Could have done
To make me happy.

You have done it
Without a touch,
Without a word,
Without a sign.
You have done it
By being yourself.

The bad news?  I shouldn't say bad.  It is what it is... something we've expected but you're never ready for when it happens.  This morning, Luther couldn't lift his arms at all.

To date, he's had limited use of his arms.  No shoulder strength at all but he could fling up his elbows and grip a little.  This morning, he couldn't fling and no grip.  How can you be alone if you can't use your arms?

So far, I've been able to leave him alone for a time because he can take stuff out of the fridge, pop it in the micro wave.  Awkwardly, he can use the phone or the bathroom...  but he could use them.

Now?  I'm not sure.  Toward the afternoon, as he got "warmed up" - he got a little better.  He could slide his pronto pups out of the fridge, on to a table, wheel the table to the microwave... but that was it.

We're not really sure what to do.  Up the home health care?  We're talking about paying someone just to be with him.  And then I think - that should be me.

It will fall in to place.  For all my worrying, everything seems to fall in to place.  I have a great family, I have a really great guy, I'm getting married!!

Sunday, June 22, 2014

Saturday, June 21, 2014

Random stuff

I've been thinking a lot about how to explain how I feel.  It seems important to make people understand what this is like.  And then I think:  is it?  Does it matter??   Life moves along whether I'm tired or awesome or happy or not.

The fact, too, is that when I tell people I"m tired or feel overwhelmed, there's a knee-jerk reaction to want to fix things.  I've done that too -- you want to help.  You want to say something or do something to help your friend, the person you love.

Sometimes I just want to be heard.  No replies.  No fixin'.  Not even really heard, though.  Understood, maybe??  I don't know.

So here it is.  Wait.  Do I need a few disclaimers?  Each day, I am incredibly grateful for my family, my friends, my work.  I am so thankful we get help from the VA.  I know I'm lucky in many ways and I feel this, too.  It brings me comfort.

So here it is.  How I feel inside.

I am tired all the time.  Eye twitching, in my bones tired.  Even when I sleep enough or it's been an easy day, I'm tired.

My heart is heavy.  I am overwhelmed with grief.   There's been a level of acceptance and I don't cry, I don't mope around.  But it's always, always there.

At times it catches me off guard.  It takes my breath away. I'll look at Luther and he'll seem so small.  Or he'll reach over in his crab like, awkward way to take my hand. Or my God!  He'll be so cool, so un-flustered and so so good to me and I think there's no way I can let him go and the sadness washes over me.

That's it.  I am tired and sad and I carry this with me every day.  99% - well... maybe more like 75% of the time - it's just under the surface.  I go to work, I hang out with friends, I monkey around with Luther, I function like usual.  There are moments, though, I check out.  I have to stop, steady myself, come back to the moment at hand.

Tonight is one of those nights.  Sad,  Tired.  The feelings are bubbling over a little.  Maybe it's just time for bed?

Sunday, June 15, 2014

Big night out!

Last night was the first night we used the wheelchair out.  This was the manual chair - not the new power one.   We need the van for the power wheelchair - hopefully that will be here soon.

My sister - who is a champ with helping me (and Luther) out - drove us.  We went to the Dakota to see a band.  Dinner earlier downtown.  We met some friends of mine.

It was excellent!  I ran in to a few ankles but people seemed to be pretty understanding.  We wheeled the chair right up to a table - perfect height.  We had an awesome dinner, great company - a few cocktails!

We walked over to the Dakota and realized the reservations I'd made weren't going to work for Luther's chair. My girlfriend is incredible at getting stuff done so she got us a great table - the Dakota staff was very accommodating.

What's secretly interesting is to watch people respond to someone in a wheelchair.  It's a study in kindness and community spirit.  Holding open doors, helping maneuver the chair, stepping in to help lock the chair and frankly, just getting out of my way (!!) was pretty cool.

We had fun - my friends are good with us, they keep me grounded, they don't see Luther as sick.  My sister is always fun to be with - she's understanding, a trooper and just good people.

It's times like last night I realize I'm fortunate to have these people in my life and because of them, we can continue to have fun, lighten up, enjoy a big night out!

Friday, June 13, 2014


4 am.  Awake.  So tired but I can't fall asleep.  Fortunately, CSI Miami is on and that tends to put me to sleep.

I was watching the videos from Ed Dobson, an ALS person (the videos are linked in the last post) and I am feeling pretty validated in having these fears.  He says when you live in fear, things become overwhelming. This is where I'm at.  Plus being tired all the time.

Luther says he doesn't cough much and it doesn't bother him.  Luther coughs all the time and it bothers me. Whether we go out to dinner and he starts choking or he's just sitting down stairs, he coughs then chokes a lot.  Let's say minimum once an hour but generally, it's several times an hour.  This is why I'm awake at 4 am. This is partially why I'm tired all the time because I wake up at least two to three times a night because of it. Generally I fall right back asleep.

So what is this living in fear thing about?  It's not like a 'what's that noise' in the dark fear.  It's hard to explain.  Fear of the unknown?  I don't think so.  It's more fear of the known.  What's ahead.  The fact my boyfriend is dying a slow, ugly, horrible death and we're watching it creep along.    We know what's going to happen next.  He'll lose mobility in both legs.  He'll start drooling soon.  He won't be able to get out of his wheelchair on his own.  He'll stop talking.  He'll be frozen, he'll be able to feel things but can't move.  He'll stop swallowing.  And then he'll die. I fear every single step because even though I know it, I can't really even imagine it.

I don't even think about it much except for times like now, 4 in the morning when I can't sleep.  As each thing occurs, we seem to just accept it because the onset tends to happen so slowly.  Luther might say this is happening faster than he planned.  And yet, it's one of those things that you see every day so you become a little more acclimated.

This fear is more... simmering under the surface.  Not acknowledged every single day but it's there.  Can something be subtle and pervasive at the same time??  It's just there.

There are moments of being super overwhelmed by it.  Like this morning when I was having a breakdown because I couldn't find my leggings.  It wasn't the leggings.  It was the fact I was leaving Luther alone, I was tired, pick a million reasons why.  It wasn't the fact I could not find that pair of leggings that aggravated me. It was the realization that this is my life.  Our life and it scared me in that moment.

I try - and usually do - live all those cliches.  Live for today. Be happy now, be grateful for what we do have. Generally I do a good job.  So does Luther.  He does an incredible job.

I don't like it when people tell me to get over it.  Or get upset with Luther because he's not helping me more. I cant impress on people enough that he can't move much anymore.  He sits in the basement 8 hours a day, waiting for me to get home from work.  He can't use the computer anymore.  I was upset that he wasn't ordering groceries to be delivered -- until I realized he couldn't use the computer screen anymore.  It's just one more thing to add to my list.

It doesn't seem like a big deal, does it?  Just go online and order groceries. Stop whining.   Just do it.  There are days, though, it's all I can do to get us fed, get us dressed, ready for the day, work, get home, hang out for a quality hour or two that doesn't involved meds, feeding tubes, talk of plans or feelings or the future then get him ready for bed and do it all again.  Ordering groceries gets shoved to the back of the list like 1000 other things.

Get help, I hear.  I have, to some extent.  We have home health care 3 days a week from 10 - 1.  We had a woman we liked and now she's leaving.  We haven't met the new guy, he didn't show up on his first day.

The health care person is supposed to bathe him, help him with washing his face, brushing his teeth.  But Luther feels odd doing that.  He was getting to a point he was feeling more comfortable with the woman but now we're starting over.  I have to respect that Luther doesn't want a stranger hosing him down.  At some point he has to get over that but right now, I'm not going to force him to do that.

I don't know.  I can't even explain it here.  I start out talking about this large, looming feeling and get caught up talking about one specific thing.  Ordering groceries.

I am not overthinking this.  I am just thinking about this.  How can I not??

Yes, yes, I'll make my lists, I'll get stuff done.  I'll put one foot in front of the other, I'll ask for help, I'll find the balance, I'll figure it out.

In the meantime, at 4 am, with my eye twitching, with heartburn and a charlie horse in my left calf, I think it's ok to be scared, to feel overwhelmed, to have a good cry and just feel tired.

Thursday, June 12, 2014

Please watch this

This is one man's life with ALS.

It is short, one to two minute "films" -- in each one, I found truth, hope and sadness.

Please take some time to view -- it's insightful and in many ways, hopeful.

Tuesday, June 10, 2014

The things we do for love.

Nine hour day.   Just pulled in to the driveway.  Hungry.  Tired.  Feet hurt.  But he's been cooped up all day so I'm waiting for him to come up and we are taking the chair out for a spin.
Maybe I can sit in his lap and relax a little as we go??? 

update:  nice night.  the spin wasn't so bad!  

Saturday, June 7, 2014

From Luther

Luther asked me to post this for him:

Lynn and I have talked several times about me posting to her blog or starting one of my own. So I'm going to share my typical day.

I've been waking up early lately which is strange because I've been going to bed later. I guess it's just another part of the disease. The first thing I do after I wake up is lower the foot of my hospital bed and throw my feet over the edge. The weight of my legs helps to get me in a sitting position but occasionally I have to use the hand rails to pull myself up. I then go outside and smoke a cigarette before coming back in and settling into my recliner. If it's too early I just sit quietly and use my phone to check email and catch up on Facebook, I don't want to disturb Lynn so I try not to turn on the TV before 8.

I spend most of the day watching TV. My home health care person comes on Monday, Wednesday and Friday from 10 to 1. It's nice to have someone to watch TV with and make small talk. She also does range of motion exercises with me and makes sure I get lunch. Lynn fixes my lunch and leaves it in my fridge in the basement. I'm pretty much confined to the basement now. I'm comfortable in the basement and have most everything I need; small fridge, microwave, hospital bed, TV and my recliner, all the comforts of home in 500 square feet.

I usually take a nap in the afternoon after lunch whether I want to or not. Trying to find something entertaining on TV can be a challenge. I'm not into the celebrity reality shows or all the conspiracy shows that are on. I try to watch one of the national news shows and the local news just to stay in touch with what is happening in the world. Dinner can be something Lynn prepared that I can heat in the microwave, something someone brings over or something Lynn picks up on the way home.  I spend the evening watching some more TV before I turn in around midnight.

So that's my typical day it's quite a change for someone that was used to working 40+ hours a week. It's been almost a year now since I had my first noticeable symptom. It took about 6 months from the onset to diagnosis. I really thought things would progress slowly but I've been rather surprised how fast the disease has advanced. I don't notice a change everyday, they just suddenly appear. I've lost the use of my arms and my right leg is becoming more useless on a weekly basis. 


from Lynn:

in good faith, I want to leave my comments to myself and let Luther's words speak for himself even thought it's really really hard for me to not comment.

Tuesday, June 3, 2014


How does an indecisive person make decisions?   Most who know me know I tend to wander along until someone or something moves me in a different direction.   It takes me forever to get things done.

I've become somewhat ok with this.  I surround myself with people who like to lead.  I'm an awesome follower.
The above was written last night.  I wasn't really sure where I was going with this... kind of ironic considering the topic.  However, it came back in to my thoughts when I was talking with mom about the usual day to day mom/daughter stuff - everything and nothing.  How was your day?  What's going on?  But she made a comment about something she was doing and she said, "you know me, I get things done."  It got me to thinking about what I wrote last night - that I do NOT get things done.

There are a zillion decisions to be made.  How the heck am I going to make them?  Things fly through my head, like a tornado.  An angry, tangled up tornado.  Once in a while a lone tumbleweed in my head.  What other metaphors (or is that hyperbole?) can I use to paint a picture of my brain when I think about these zillion decisions....

Do I make a list?  Check it twice?  Cross stuff off the list?

1.  We need to move.
2.  Where do we move?
3.  What do we do with my townhouse?
4.  What is on Luther's bucket list?
     -  Trip to see his family
         -  He wants to drive but I have to drive the entire way.  I want to fly
         -  Timing?
     -  Road trip to Wyoming
     -  Cruise to Hawaii
     -  Take two months off in the winter to go someplace warm.
         -  Can we afford it?  What do I do with work?
5.  When do I stop working?
     -  Do I stop working?  Can we afford it?  What do I do later?  If I stop working now,
         how long could that actually be?
6.  If Luther doesn't stop coughing/choking, what do I do?
7.  Why don't we ever get that handicapped vehicle sticker we keep saying we will?
8.  I need the bedroom wall sheetrocked, who do I call?  The light outside needs to be
     fixed.  Who can do that?  Simple things, it seems but I keep adding to the list.

I could go on.  And on.  I understand I need to take just one thing at a time, break it down, check it off the list.  But holy cats, it feels daunting.  So much of this has a limbo quality to it.   Will he become frozen in a year?  Will he stop eating in two years?  Will he die in three?  Five?

There is an element of guilt attached to some of the stuff.  Doesn't it seem like the guiding light, the guiding force should be to spend as much quality time with Luther as possible?  Make his bucket list come true?  But practical forces are at work, too.  Bills to pay.  A future without Luther lingers in the back of my mind.  If I give up work soon, where will that leave me in the work force in my mid to late 50's?

That whole pull yourself up by your bootstraps attitude just needs to happen.  Stop thinking so much.  Just do it.  Get 'r done.  Cross a thing off the list.

You know me.  I get things done.  Kind of....