March 2016 – Rise

neil with mom loralee - 1969

neil with mom loralee – 1969

Did you know that March 24, 2009 was the day Neil’s loving mother passed away?  March 24, 2012 was the day Neil and I celebrated our 20th wedding anniversary with a beautiful, bittersweet party knowing his life would be cut short due to ALS.   And March 24, 2015 is the day my precious husband left us.  So, pretty much March 24th is my least favorite day.  This year the kids and I will spend that day in sunny weather, seclusion and peace – reflecting on his 49 years and how the second year without Neil will unfold.

I don’t have a lot of wisdom to share for how to “do” grief.  Hard as I try, I have found you can’t breathe it away.  Pray it away.  Scream it away.  Drink, exercise or sleep it away.  It’s best not to do it while driving.  Three AM grief-fests are not productive. And although I have fewer spells of unabashedly crying my eyes out, it can’t be delayed or avoided when it sneaks up on you.  Right now, for me, living with grief is like you might find living with a big ugly houseplant in your home.  You have to move it from room to room because it keeps getting in the way.  At night you bump into it because you regularly forget it’s there as you walk the floor due to sleeplessness.  In the daylight you look away, trying to ignore its protesting droopy leaves and dead stems from lack of water or care.  When visitors drop by you embarrass yourself trying to explain your big ugly houseplant when, really, it can’t be explained.  And occasionally you admit it has needs too – setting it outside for sunshine and fresh air.  Neil was so much better at analogies – usually something smart from baseball or US history.  He would tell me to edit that one out.

I like the wise words Tim Lawrence shared in a recent essay:  “Some things cannot be fixed.  They can only be carried.”  He was offering a hard truth in response to the quick-fix tendency of so many of us to lighten the load of grief via well-meaning but sometimes harmful expressions, actions or absence.  In my experience there is no wrong reaction or words when they come from loving intentions, but patience, quiet acceptance and distractions have been most helpful to me so far.  From my vantage point (I am a widow.  I have never written those words before.)  there is very little to be done as we move through grief.  Just being is work enough.  I stick to my side of the bed to find brief comfort from our habits.  I wear his big jackets like super-hero capes to feel strength from his memory.  I rummage past his toothbrush, glasses and razor each morning to fool myself for a moment that things are as they were.   I call up his philosophies as I parent the kids, with a “Dad would say…” or “Your Father would never…” to keep him involved in their lives as he hoped.  And then I get stupidly caught off-guard when I miscount the number of place settings for dinner or when a memory has faded yet I am the only one who could/should remember it.  When the kids give me another blank stare as I try to recall the role Dad played in “1776” in high school, or what exact time in the morning they were born because that was his job as I recovered from their births, or what the words to his always off-key but loud “good morning song” were, I realize how much I rely upon him for writing the story of our family.   Like it or not, when you are with someone for 26 years, you assume responsibility for each others’ memories.  No one tells you this when you fall in love and get married and just be.  But when they are gone just being is … I don’t have a word.

Perhaps the best bit of wisdom came to me from a woman I never met, in the only conversation we ever had just weeks after our diagnosis.  I telephoned her on the advice of a friend because she was many years into her own ALS journey at the time.  Her words were mean and ugly to me at first.  I think she chose them because I was hyper-ventilating with fear of this new future before my family.  But I have come to see how very wise she was.  She said, “Suzanne, get over yourself.  Everybody has something.  Some people have cancer, a sick child, a parent who let them down, divorce, unemployment.  This is your thing.  Get over it.”  Ha!  I wanted to hang up on her when she said that.  She made me so mad!  How could I possibly get over the theft of every single peaceful moment for the rest of my life?!  How could I get over the back-breaking and confounding journey of an aggressive and 100% fatal diagnosis in my home?!  How could I forget he felt lucky that he got ALS and not me?!  How could I erase the image of his suffering?!  How could I hide it from my young children?!  And how arrogant to suggest it’s just a matter of getting over myself!

Now – all these years and tears later, I think I should call her and thank her.  She was right.  I had, and still have, a choice to make about how to approach all of this.  I don’t think she meant for me to deny the grieving or skip the work of healing.  I think she meant for me to remember everyone is carrying a grief of some kind and that I should take comfort in the fact that people move through their own versions of profound heartache every day – this is what humans have done since the beginning of time.  And if I get really poetic about it I can even say how beautiful this makes our lives while we are here – how much more empathetic we can become, tuned in to the human experience, resourceful, prioritized, accepting.  I’ve read you can’t really experience extreme loss if you haven’t experienced extreme love.  I have experienced both now.  I’m in good company.  And Neil was an excellent role model for every single bit of it – especially the “get over it” part.

My favorite singer-songwriters have been pulling double duty trying to get me through.  While there are entire libraries from certain artists I can’t listen to still, there is a long list of musicians distracting me with a catchy beat, validating my sad moments or putting words to an emotion I am feeling.  Here’s a link to a current favorite – “Rise” is a little more user-friendly than “Get Over It” but you get the point.  My only complaint about this song is that it’s too short, so I usually listen to it twice.  Once to honor the life Neil lived and the courage he showed to rise above his situation – finding his direction magnetically – and the second time to help me do the same.  If you listen to it, turn it up loud.

I remember the rush of support that came our way when family and friends heard of our diagnosis in the Summer of 2011.  I remember the circle of people who lifted us up in broad daylight and in the dark moments of the night during the 32,760 hours we lived with ALS in our home.  I remember the doorbell started ringing a year ago March 24th with food, flowers and love – and quite a few people that didn’t even knock.  You just showed up – family, friends and strangers, hoping to crowd out the sadness with hugs, stories, laughter (someone even brought a box full of baby chicks because she thought a little cuteness in our house would help!).  Every step of the way you brought us a brilliant diversion or signed up to help.  Gave Neil encouragement.  Wrapped your arms around Abby and Patrick.  Made our cause your own.  And made this all easier than it might have been.  Certainly you gave it all meaning.  And you still do.

From the bottom of my heart, and on behalf of our family, thank you.

With love and gratitude for every single day… Suzanne

20th anniversary party - vow renewal