Monday, December 29, 2014

From the man who started the ice bucket challenge...

                                             This really cute kitty wants you to watch this video.
     (Click the blue link below)

Click the link above - it's an awesome AWESOME video shown on ABC News about Pete Frates. He's the guy who started the ice bucket challenge.

This brought tears to my eyes on a personal level as I watched Pete's personal home care attendant pick him up out of bed, as I watched his dad tie his tie.

It reminds me of us and the trajectory we're on.

It also brought happy tears to my eyes and filled my heart (is that too sappy!?  Can I be too sappy talking about this stuff?!!) when I saw the very first ice bucket challenge and the amazing involvement of so many people.

In my last post, I questioned whether the ice bucket challenge created awareness.

Watching this video makes me realize it DID promote awareness, it raised much needed money.

Many - most - folks won't know the specifics.  And maybe they don't need to, as long as it's somewhere on the radar,

Friday, December 26, 2014

Do you know why you poured a bucket of ice over your head?

I haven't given much thought lately to whether or not people know what ALS actually is.

I started this blog to vent, to get my fear and frustrations out of my head and in to the ether.  In to space.  Anyplace but locked inside me where crazy thoughts just multiplied in to crazier thoughts.

As I got to know more about the disease, I decided I wanted to use this blog as a way to let you in on ALS.

Luther and I interact with family and friends with this new identity: terminally ill; I thought this blog could serve as a way to help people in our lives be more comfortable with that label. 

As we met more people who (like us in the beginning) didn't know what ALS was, I thought this blog could shine a light on this disease.

I've lost sight of that a little over the past few months and have simply been reporting on our life.  My place to vent.  

It was a couple nights ago, when we were with a new group of people, that I realized ALS is still a mystery disease.  Even with all of the publicity this summer, all of the money raised (which is awesome!), people still do NOT know what the heck ALS is.

The people we were with knew Luther was sick.  But they didn't know why.  When I said it was ALS, I was asked, what is that.  I said Lou Gehrig's disease. Again, what is that?  I said, you know, the ice bucket disease?  Ohhhh - yeah.... that.  But what is it?

In thinking about the ice bucket challenge, the way the challenge "went viral" and raised so much money was really a thing I'm not sure will be repeated.  It just took off in this amazing way.  I will forever be grateful for that level of awareness in terms of getting people to think about it and actually donate!

But I realized there wasn't much talk about the actual disease.  What is it?  What happens to you?  Is there a cure?  Is there a treatment?

I want people to know what ALS is.  How it affects people.  How we live with it.

Maybe people don't want to know????   Everyone has their own problems.  A lot of people have dealt with illness, their own health issues, with death.  Do you need to hear from me about our host of issues?

I struggle with saying too much here.  With sharing intimate or sad or angry things.  And yet, I hope what I write lets you in.  That's a huge thing with me.  If you've read through this blog, you know I keep things closed off, walled up.  Being with Luther and especially now with this disease, I've been forced, in a good way, to be more open.  Let people in to our life because we need the support.  

I want to let you in on what life is like with ALS in order to create a bond, to share our story.  I don't want pity or sympathy.  I'll take your compassion, your support and I especially like hearing from people who share their perspective on their life.

I think I'm rambling.  ADD thinking.  Weaving from one thought to the next.  It's late.  Time to tuck Luther in to bed.

Summer fun - our icebucket challenge:

Monday, December 22, 2014


So Friday was my last day of work.  I didn't consider the weekend official retirement days because it was the weekend.

Today, Monday, 12/22 is my first official day of retirement.

It's this wide-open, vast feeling.  I look to the future and it stretches out ahead of me.  Which really is another way of telling myself I can clean the bathroom tomorrow...

I'm not a super structured, disciplined gal.  I tend to let the day direct me -- I don't really plan much.  As much as I like to think this is going with the flow, it's really more not being comfortable in a planning, leadership role.  At work it was different -- I was good at figuring out what needed to get done and doing it. I could juggle 12 things and maybe drop one plate.  At home, I don't even pick up the plates.

It's going to be an adventure for sure planning out each day.  I feel like a clip board might be in order.

Being with someone a lot feels, ummmmm, interesting.  I think I need to set aside this feeling that I'm Julie from the Love Boat.  Entertainment Director.  On the flip side, I have to remember to go be with him.  We aren't on the same level (my 3 level townhouse).  Sometimes I get to doing something and two hours go by and I realize I've left him downstairs.  Being responsible for someone's activity is weird.  Do you have an itch?  Do you need to eat?  Glass of water?

It will be great when we move to be on one level.  And have the wheelchair inside the house so he can move around on his own.

Well - off to go do retirements stuff.

Disclaimer:  This probably isn't 100% retirement.  More a family medical leave.  As is the norm these days, my work future is in limbo.  My work's been great in terms of allowing me to change positions, go to different stores, take time off when needed.

On my last day, I kind of expected a parade or confetti.  I've worked at Turn Style for 18 years!!  My boss did show up with flowers and a hug but he said he wasn't planning on doing anything because he figured I'd be back.

Who knows?!  I might be...

In the meantime, I'm going to go make a plan!

Sunday, December 14, 2014

on the upswing

Life seems relatively sane lately.

Luther's coughing has decreased quite a bit because of his new meds.

His new meds make him feel good, less pain.

His mobility isn't the greatest; in fact it's gotten worse.  For me,that's ok.  I can lug him around any time.  I'm just so happy to have him lucid and still eating and talking and swallowing.

There was a time in our relationship I wasn't sure if Luther was the guy.  The one.  I hate that he's sick, I hate that he's in pain and has to go through this.  But in so many ways, this stupid sad disease has made me fall in love with Luther so much more.

I get mad at him like regular couples get mad at each other.  It's not like the ALS has created this fairytale.

Quite the opposite - it's a nightmare at times.   But struggling through all this together creates an amazing bond.  He's so patient with me, he's so kind and generous and he's the one who holds me together most of the time.

I just wanted to write a post to tell everyone we do have fun, we do enjoy each other and it's not always such heavy, sad stuff all the time!!

Tuesday, December 9, 2014

I let a friend down tonight

What a weird feeling.  I'd made plans with a friend tonight and I completely forgot about it.

There are a million things I want to say:  why didn't you call when I didn't show up?  why didn't we connect from the time we made the plans to today to reconfirm?

But there really is no excuse other than I forgot.  It's a really lame reason.  I know it.

I know I made her feel not important.  I feel selfish and wrapped up in this.  I can try to defend myself and say I have a right to feel selfish.  This is an extraordinary time.  And yet, my friends are my friends.  In this extraordinary time, they are my lifeline.  My support system.

It's a two-fold thing:  life in it's most ordinary of ways, marches on and I have to march with it.  I still have to make dates, go to appointments, remember to show up.  I still have to be a friend.

The second part of it is I'm in a situation I've never faced.  Maybe in this time, I need to be more aware, more diligent. An even better friend.

I owe it to her but I also owe it to me to make sure I'm keeping connected. I need her friendship, more now than ever.  But she needs mine, too.  It makes me feel good to be a good friend and tonight, I wasn't.

This feeling is reminiscent from several months ago when I was forgetting a ton of stuff.  I think I forgot a plan with this friend back then, too.

I was forgetting times, dates, appointments.  When I started using a calendar, I was putting the wrong time/date in to the calendar.

I don't know why I'm in this mode? I mean, I guess I can put it all on Luther's illness.  But it's not that. That's too easy.  It's got to be more.

Thank goodness I have therapy tomorrow.  This goes to the top of the list.

Monday, December 8, 2014

Guilt. Grief. Just another day.

Today, I'm giving up my cat.  I've retyped that sentence about five times.  Giving her away. Surrendering.  Giving up on her.

I've had her 14 years.  She's a good girl.  A lot like me, I guess.  She doesn't like a lot of attention. She hangs out by herself a lot.  When she wants something, she'll let you know without too much drama.

When I come home from work, she'll run down the stairs and come sit wherever I am.  She doesn't really like Luther too much.

If you've read my previous posts, you know Luther is pretty much always downstairs. When I spend time with Luther, once in a great while, she'll come down and sit a few feet away from us. Generally, though, she hangs out on the stairs so she's near us but not in the same room with him.

When I first got her, I didn't see her for about 3 months.  She hid.  I knew she was alive because she was eating and pooping.  Eventually she came out and we became friends.  I am her only friend because she is unwilling to come out and meet anyone else.  Most of my friends and family don't believe I have a cat; they've never seen her.

Now that we're heading south for a few months, now that we're moving and don't want cat hair and allergies at anyone else's home, it's time to surrender my cat.

I've been thinking about this for a long time.  I'm off to let her go right now.  More later.


Well -- I guess I don't need to write Baby's (that's her name) obituary.  She's not dead.  She's finding a new home (hopefully).  They said they have a couple different programs for older, shy cats - well, probably for cats that don't get adopted right away because they aren't super cat-cute... one of the programs is called "Hidden Gems" - which made me smile.  My hidden gem of a cat.

I think this whole thing isn't about the cat.  Well -- it is.  I'm sad.  I'm sad right now that she isn't here. I wonder if she's scared or lonely.

But it's more about the changes, these changes we're all going through... the feelings we all get to feel.

I'm pissed off that I gave up my career, that I gave up my cat, that I'm giving up my home.  Pissed off in a general, shake-my-fist at the sky kind of mad.   I'm not mad at Luther.  Far from it.  Just pissed at ALS.

It's difficult to explain to most folks.  We're so so so fortunate that I can afford to stop working.  How lucky is it that I can move in with my parents?  They live close.  They said YES.  We're going south for the winter.

At the same time, I'm feeling scared.

Ok.  Enough, I guess.  I can "wrassle" with these feelings forever.

I talked to my therapist about letting go of these feelings and he said you'll never let go of the feelings.  They aren't things to let go of.  The stuff that makes you feel is what you let go of, not the feeling.  Makes sense in many situations but... in this case, it's a terminal illness that makes me feel this stuff.  How do I let go of that?