March 2017 – Something I Didn’t Tell You

Anyone who knew me before Neil got ALS knows my garden was, once upon a time, my pride and joy.  They probably know I grew up without a lot of means…so I never really had a yard or dug around in dirt, and I certainly never understood or loved worms like I do now.  When I told Neil years ago I wanted to turn what was, arguably, the flattest lot in Pittsburgh but mostly clay, into a beautiful space to grow veggies, flowers and have our kids play in it… he kind of laughed and said “good luck with that” and “don’t spend a lot of money”.  Haha.  Neil was interested in many things, but grounds-keeping was not one of them. 

So with a little help here and there but mostly my own weak muscles and weaker know-how… I began frugally throwing down cut newspaper, dried leaves and straw to create rich beds over immovable clay, hauling bricks, stones and cuttings from generous neighbors’ yards, buying baby shrubs and trees on sale, starting seeds and hanging out with legitimate gardeners.  Our friend Greg came over with his front-loaded shovel to scrape a vegetable patch into the clay and I moved yards of soil using the kids’ old Radio Flyer and eventually a Mother’s Day gift of a new wheel barrow.  I couldn’t wait to dig in the dirt and wage epic battles with my slugs, compost piles, and 9’ tall raspberry bushes.  The young men who mow our lawn started calling me “la granjera” – Spanish for “the farmer”.  And I served way too many tomatoes, chards and lettuces complete with bug “protein” on the dinner plate. 

My garden was a labor of love – my own thing separate from my marriage, my kids, my work.  It wasn’t elegant or properly designed.  But it was mine.  Throughout the process Neil was my constant, albeit arms-length cheerleader, enduring hours of my planning and praising my weenie carrots,  pumpkins and cut flowers.  Even later in his disease he would wheel out to the back yard to encourage me as I weeded, planted, whatever.  When living with ALS took over our lives our friends Curt, Don and Pat, along with a few kids, actually planned and planted my summer vegetable garden for me because I couldn’t get to it.  Another friend Lynne came and planted 200 spring bulbs with me on a rainy fall day.  These were such loving gestures… friends with strong backs trying to preserve the things that were special to me in the midst of our sadness.

But ALS eventually ruins things like that too. 

As Neil lost his ability to move, feed, bathe, and as his breathing grew weaker with every day… my garden grew into a jungle of sharp thistles and vining weeds.  It became a nagging symbol of loss for me… one that I saw every day as I looked out my kitchen window with a view of my dream turned to an impassable tangle.

My garden has sat mostly untouched for two years now.  Along with cooking, reading and listening to certain musicians, I have purposefully avoided these things in the two years Neil has been gone.  It’s not that I haven’t had blissful moments or that I’ve been a depressing mess all this time… it’s just that some activities present more of a hurdle when you are in mourning.  These are things I used to do because someone who adored every bit of me knew the back story.  Was interested in my interests and proud of my gumption.  Wanted to hear about it.  Made light-hearted fun of my mistakes.  

This is what you get in a long loving marriage where mutual respect, trust and enjoyment are the constants. 

And what you lose when your best friend dies.

So, remember that woman I wrote about who was the meanest person in the world ever, ever, ever?  The one who gave me the brutal Lesson #1 and told me “Suzanne, get over yourself,” when I asked her for advice on how to do the ALS journey right after Neil was diagnosed? 

Well she gave me one other brutal piece of advice.  It’s something I didn’t tell you before – have hardly told anyone because it was so hard for me to hear the words.  I never told Neil.  But I think it is important to share.  As we approach the two-year anniversary of Neil’s passing I have the benefit of time to smooth over the pain and look at this experience a little more rationally.  Living 10 years with my beloved husband’s chronic weird aches and pains, 4 ½ years of a fatal diagnosis and caregiving, and now 2 years since his death… it is helpful to share my lessons.  Because once I’ve said them out loud (written about them here) they are officially no longer my secret, but rather our collective perspective for how we might get through impossible things. 

It went something like this…”Suzanne.  The moment you got the news of his ALS diagnosis, you and Neil arrived at a fork in the road.  You may not have realized this, but your journeys are now going to be separate.  Forever.  He is going to need different things than what you will need as you both go through this.  The time you have left – it could be two years it could be 10 – you are now, officially, on a different path for the rest of it.  You will make choices to cross over and be with him at times.  But you have to take care of yourself now and let him take care of himself.  You can’t fix this.  And you can’t do this with him.  Not the way you think you will anyway.” 

It’s hard to express how difficult it was to hear this.  Up until that moment in our lives Neil and I were one.  We “grew up” together.  We were on the same path for 22 years at that point… he was my journey.  His future was my future.  His diagnosis was our diagnosis.  His pain and fears were mine too.  My plan was to live every bit of this with him.  It’s how we did things.  Everything.

I decided to reject and then just ignore her words.  There was no way we were going to do this disease needing support outside of each other.  And largely the early treatment options we tried, parenting of the kids, making memories with family, and preparing our home for his illness were the common activities that marked our doing this next chapter together, at first anyway.  We still loved and laughed the way we always had – talked about family, baseball and current events like the friends we always were.

But we quickly eliminated conversations about our retirement dreams.  Our grandchildren.  Old age.  And ultimately stopped talking about anything of more than a year in the future – like what the saplings will look like when they are fully grown, next summer’s plans, the kids’ college dreams, my future – these subjects were off the table.  This was a very different culture from what our marriage had always been. Neil and I were always big planners and so intertwined.  But my role became caregiver and chief documenter of his life.  His role became thought leader and general rabble-rouser for the cause of ALS.  In time, we started parenting separately because the kids needed different things from each us during this period.  He developed friendships with people on a different level because of who he was becoming.  I did too.  He turned to his books and brave role models for insight on how to “do” living with ALS and dying from ALS.  My respite came from music and occasional walks and talks with other friends.  It became clear – Neil and I needed different things to face the terrible illness and impending death of half of us – like it or not.

Toward the end when we were together, which was all the time, we started just living in the moment.  While moving through the routine of his daily life we didn’t talk much about the past, and not at all about the future.  I liken those days to the practice of “mindfulness” – one of the foundations of Zen Buddhism or something you might associate with meditation or devotional prayer.  For us, it wasn’t about avoidance of the path before us, but rather focus on the very next thing… breathing, laughing, kissing, moving, stretching, being.  It became a stripped-down, quiet version of our marriage and ourselves that was, to me, a state of grace.  We accepted the flawed, raw life we were living.  And in those moments we experienced, I think, the richest kind of tender loving care. 

I’m so very thankful we were holding hands and both sleeping when Neil died.  Neither of us saw it coming – not that night anyway.  We were together.  We were peaceful.  He would have wanted it that way. 

I have learned that not everyone I meet or even love will be a part of my future.  But everyone who passes through my life will teach me something.  If I am open to it.  Neil taught me the most beautiful lessons of all.

I am not the same person I was when we met and fell in love in 1989.  I am not the same content wife and the relatively care-free mother of his children.  I am not the caregiver, with all the fear, gray hairs and constant back strain.  I am not the disoriented widow of the past two years either.  I am not even the brave smiley gal my curated social media posts suggest.  I am all of those things.  And I am a work-in-progress. 

Now, equipped with the perspective of these past few years, I am ready for the next version to emerge… though I don’t know what “next version” really means. 

But I’ve been preparing for it. 

I have spent recent weeks moving Neil’s personal things out of his mostly untouched office.  This included the daunting work of going through his 200-odd books and shipping many of them to family members and friends who would cherish these treasures as much as he did.  Seeing his handwriting on random slips of paper.  Visiting with the man, husband and father he was before he got sick.  Taking his degrees off the walls and moving his favorite things into smaller spaces.  Saving mementos for the kids.  And moving myself in – making his big office space my own and freeing up my old desk for the kids.  This chore may sound like a simple thing but it was actually the hardest task since he left.  It was symbolic in its permanence and in the permission I have given myself to evolve in my own home. 

I have also spent the weeks since the new year focusing on my own health and fitness.  Those who know me know this is very unusual indeed!  But I have a “milestone” birthday coming up this year – one that Neil didn’t live to see.  So I will honor his life by running in my first-ever 5k (believe me this does not come naturally to me at all!) in a few weeks, focusing on a healthy and optimistic future, whatever it holds.  Not because I have time on my hands.  But because I want time on my side.  We only get so many days in this life and I am determined to be as strong as possible to enjoy the days I have left.

And, biggest news of all, the LiveLikeLou village has achieved a HUGE milestone.  We, and by we I mean mostly YOU, have raised the $1 million endowment for ALS patients and their families in Western Pennsylvania, and the $2.5 million we pledged toward the Live Like Lou Center for ALS Research at The University of Pittsburgh.  It’s true!  It’s what Neil dreamed of.  He wanted to use his journey with ALS to bring hope to the next guy who gets this diagnosis – the next dad, mom, brother, sister, friend who faces ALS.  And he wanted Abby and Patrick to forever be connected to him through this endowment.  Now, for as far into the future as we can see, they will be involved in annual grant-making and directing these funds to leave ALS better than we found it, in honor of their Dad’s good life.

Five years ago, March 24th, we announced the kickoff of LiveLikeLou.  That night in 2012 we renewed our wedding vows and committed our energy to raising money and doing good for the disease that would take Neil from us.

Two years ago, March 24th, Neil died from ALS.  He was only 49 years old.  His precious children were 13 and 11.

This year, on March 24th, Abby, Patrick and I, along with our dear friends Kim and Curt Fleming and our most active LiveLikeLou volunteers and donors since the beginning, will gather one more time… of course at The Roberto Clemente Museum, to celebrate our fundraising milestone. 

This doesn’t mean we are done doing good for ALS or that LiveLikeLou is going away.  In fact, there are several more fundraisers planned for this year (notably the next CMU Donut Dash is planned for October 1st – please plan to be there and please watch our Facebook page for other announcements). The funds we raise will always go to ALS causes in our region.  I personally will always stand ready to talk about this disease and represent patients, their kids and caregivers when asked.  I will spend the rest of my life waiting for the therapy or the cure that we have all contributed to.  And I am certain you are with us in forever being touched by this disease and the experience we have shared with LiveLikeLou.

So I (and I know WE) are not done. 

But for now, at least for the next little bit, I’m just going to hit “post” on this essay. 

Then I’m going to find my trowel.  Pull on my mud boots.  Open the door and breathe in this gorgeous sunny morning.  Walk out to my garden.  And dig in the dirt for a while.

With love and gratitude for every single day…. Suzanne