Wednesday, September 19, 2018

So it's been a year

I haven't posted here since February.  I wasn't going to anymore.  It's too hard.  Oddly, writing here helped clear my head.  It feels like a good time to do just that.

Ed died a year ago tomorrow.  At 9:15 p.m.

I don't really remember those last couple of days clearly, which bugs me to no end.  Or maybe it's good.  I don't know.

Grief is an insane emotion.  We grieved so many things in the 4 ALS years.

Ugh!  Here's my rollercoaster brain - I can't just say I grieved so many things and just allow for that.  I have to say "but we were so fortunate, too!"  We were!  We had the time to do bucket list things.  Time to say all the things we needed to say.  I was able to spend every day with him.

But he died.  He's gone.

In that four years, we grieved so many losses.  His hands.  His legs.  He couldn't eat that last year.  Nothing.  How do you eat and taste nothing??  He asked me to buy him gum.  He just wanted to taste something.  Juicy Fruit.  I have packs of it left.  Because I couldn't let him chew gum. Gum for God's sake.  He choked on it, on his saliva.

We grieved the loss of intimacy. We couldn't sit near each other because without the wheelchair, he'd fall over.  We didn't sleep together. We couldn't hold hands.  I could hold his.   But I couldn't feel his big hands hold mine anymore.

Loss of  mobility.  He laid on his back that last year and couldn't move unless someone moved him but he felt everything.  Every itch, every ache.  Sometimes late at night, when the ALS demons haunt my brain, I see how long I can lay there without moving.  Try it.

Back to grief.  I truly thought when Ed died, I'd be sad, but I'd be ok. Because my heart shattered every other week for four years.  Grief sat on my shoulder every single day.  Once Ed was free from ALS, I thought I'd feel some lightness.  Lightness for Ed.  Lightness because ALS is so dark, so awful.

The thing is, I'm not free from ALS.

Rollercoaster:  yes.  Yes. I am - I can walk.  I can move.  I have today and tomorrow and a future.  I'm here.

But I'm here without Ed.

Ed was supposed to be my future.  Now what?

Grief - as dark and heavy as it was - grief wrapped me in a cloak of weird safety this past year.  I allowed myself to be incredibly sad, devastated, freaked out, uncertain. I stayed away from life, friends, stuff, work, adventures.

Is there a moratorium on these feelings?  It's been a year.  Is it time?  For what?  Time to move forward.  Stop crying.  Sleep through the night.  Find energy.

In a widow's group I'm in, I've heard the second year is harder than the first.  I didn't believe it but now I'm thinking it could be true.  That cloak is disappearing.  I have choices to make.  Choices without Ed.

In that last year of Ed's life, he'd ask me quite often what my plans were for the future.  He wanted to be sure I felt safe and strong and loved.

Rollercoaster:  I alternately feel none of those and all of those.  I am loved.  I am safe.  I was strong.  Now, I'm not so sure.  But there's room for me to move toward that.   I know it even if I don't feel it,

I'm incredibly lonely.  My friends are so good.  My family is amazing.  In my heart though, I miss Ed so very much.

Rolleroaster:  How lucky I am to have had Ed in my life.  I'm better for loving him. But geez louise, grief squeezes my heart and leaves me in an uncertain, scared, weird place.

After tomorrow, all of the firsts without Ed are over.  The firsts without him.

More rollercoaster.  In one way, I'm glad no more firsts.  In another way, I'm sad because he's that much further from me.  That's bound to happen, right?

I remember standing at his grave the day he was buried.  Luther (his son) and TJ (his brother) were with me.  Thank goodness, because I had this overwhelming feeling of wanting to fling myself on to the ground.  Be that much closer to him.  He was in there.  His physical self was there.  I miss that so much - touching him, his presence, kissing him, his smile.

Time blurs memories.  Both good and not so good.  I love these pictures.  The fun pictures.  I wish I had a zillion more!!!

My mantra this past year has been:  it is what it is.  I can't change anything.  Ed's not here.  I ride the emotional rollercoaster with him beside me. He's still with me.

My mantra for the next year?  I'm not sure yet.  Stop saying "should."  Be gentle.  Find peace.

It is what it is.

Edited:  Let me end this with the memory of what a good man Ed was.  Is.  Smart, quiet, patient, funny.  He had a generous heart, filled with faith and love.   

From his obituary, just a reminder of who he was:

Captain Luther E (Ed) Cutchins, Jr. USAF ret, 63, died peacefully on 9/20/2017 from ALS. 

Preceded in death by his parents, Luther and Louise Cutchins; and his son Ryan. Survived by wife Lynn (Schlieff) of New Brighton, MN; son Luther of Chattanooga, TN; and his grandchildren, Josh, Nathan, Emily and Ava; sisters, Kay (Joel) Guy, and Linda Jensen of Marianna, FL; brother, TJ Cutchins of Tallahassee, FL; and his Minnesota family: in-laws, Harry (Sandy) Schlieff, Ann (Robert) Brannon, Jeff (Noreen) Schlieff; nieces, Molly and Emily Schlieff; and nephews, Will and Ben Brannon. 

Ed was a 1971 graduate of Marianna High School, joining the Air Force the same year. 

During Ed's 20 year Air Force career, Ed held many interesting and challenging positions that took him all over the world, including Faculty Member at the National Defense University, Software Development Manager and Special Agent with the Office of Special Investigations where he retired as the Deputy Chief of Computer Crimes Investigations. 

After the Air Force, Ed worked for several law enforcement agencies. In Florida, while working for the FL Dept of Law Enforcement, Ed was the first crime laboratory analyst for the Computer Evidence Recovery Unit. Ed moved on to work for the Virginia State Police where he retired as the Systems Analyst in charge of computerized criminal history. Ed then moved to a similar position in Minnesota with the Bureau of Criminal Apprehension where he retired after his diagnoses of ALS in 2013. 






Tuesday, February 20, 2018

The last post.

It's been five months since Ed died.  Five months today.  At times, I still can't believe he's not here.  How is he gone?  Was it all a bad dream I'll wake up from and he'll be here, so I can still talk to him?  My partner in crime, my best friend.  My husband.  I waited so long for Ed.  How is he gone??

Then I think about the nightmare of ALS.  My tall, healthy husband became a quadriplegic within the space of a few years.  Tube fed.  Bedbound.  Relying on everyone for everything.  It's crazy.  What a wicked disease.

At first, when Ed died, every night I laid in bed, not moving.  It haunted me - and still haunts me - to think of Ed laying there, unable to move.  Never complaining, never angry at the world.  I had enough anger and frustration for the both of us, I guess.

For those first few months, I played every day over and over in my head.  Those last 2 years, especially.  Did I do enough?  Did I love him enough?  What did he think about as he lay there night after night?  Did he know how much he was loved by me, his family, his friends?

My mantra is now "it is what it is."  I can't change the past.  I did my best and even when I didn't, when I couldn't because I was too sad and tired, I did it in love. 

I'm scared for my future.  Without Ed.  He was my cool cucumber, my rock.  Ed gave me security and a place to feel safe.  The thing I realize is because of Ed, what we went through, I do have a better sense of stability on my own.

On our wedding day, Ed said to me there will be a day without him.  And when that day comes and I feel despair, I need to look back on this day and remember the love we shared.  He said he will always be with me.  I believe that is true.  He gave me so many gifts, so much for which I'm grateful.

I  now feel hopeful and sometimes I even feel peaceful.  I was stuck in time with Ed for a couple of years.  Whenever I feel stuck now, I think about how gracious Ed was, how patient and positive he was every single day.  I need to live in that space - in the positive, safe space Ed helped create for me. 

It is time to close the chapter on this blog.  It's time to start a new chapter. 







Tuesday, January 23, 2018

4 months since Ed died

Ed feels so far away from me sometimes.  And then, in a second, it feels like he was right here yesterday.

I miss him so much.  I ache for his voice, his laugh, kissing him when I got to the nursing home.  It's weird - I have a hard time remembering healthy Ed. 

I wish I'd taken 1000 more pictures and videos. To hear his voice. What him   My heart hurts.