June 2018 – Final Blog Entry… Unexpected and Lovely

June 25, 2011 – Neil’s 47th Birthday, Fireworks Night at PNC Park – last pic 3 days before ALS diagnosis

I received an unexpected call a few days ago – it put me on my knees.  This one was different from the other ALS patients and their families who have reached out to ask how to deal with the diagnosis, live with dignity, leave with grace – despite stupid ALS.  This call from a patient was for advice on how to donate her body to our research center.  Specifically, how to get her spinal cord and her brain to the center soon after her impending death so that it can be used to advance the science and help find a treatment or a cure for ALS.

Just imagine.  Imagine asking someone for advice like that.  Imagine knowing your death is inevitable and soon.  Imagine knowing that your body will be used in this way.  Now this lovely woman assured me she is confident in her choice and proud that she can help.  And her generous gift is important and extremely valuable to the cause!   Nonetheless… if that isn’t the truest epitome of a COURAGEOUS BADASS moving ONWARD though ALS I don’t know what is.  I went through my day a little more humbly after that call.  A little more courageously.

I’ve only dreamt of Neil a handful of times since the day he left.  Isn’t that odd?  The dreams have been a mix of married/family loving sweetness, the lurking ALS dread we lived with, and my own caregiving muscle memory.  Each time I wake up disoriented and wondering if he’s back.  It takes a few minutes to calm my mind and banish the fresh sense of loss because I swear! He was here! I want more time! Even a dream will do!

I see him more in the light of day.  In the cardinals on my bird feeder, in Abby’s headstrong determination to take the next academic/athletic/activist hill, in Patrick’s recitation of some obscure fact of US history (did you hear about US President David Rice Atchison… he only served for one day… there’s a lot of debate about that), in songs on the radio that still make it hard to breathe until I can race to change the channel.  I call him into daily conversations with the kids to make sure they hear their Dad’s opinion on a matter because, if you know anything about Neil, you know he wanted you to know his opinions on matters 🙂

I can admit now, from my experience of having lost my beloved husband more than three years ago, that those first years sucked.  Bad.

Year One had me struggling to get out of bed every day, and drinking one too many glasses of wine every night.  I am eternally thankful for our family and friends, my kids, and LikeLikeLou…. each gave me purpose and goals, dignity, space to openly grieve and find my footing.

Year Two was spent a little more actively, purposefully, less wine and more seeking to reclaim the life we all still had left, to honor the amazing life he lived.  I took his wedding band off of my necklace.  I moved his pictures and mementos off of every flat surface and social media nook/cranny and into places where I can visit them on my terms, when I am ready to sit with my sadness for a bit — trying not to lead every waking moment with my icky widdowness.  I formed new habits of health and laughter and travel and busyness to crowd out the grief that had moved into my life.

Year Three included more of the same – more health, more intentional living.  And I opened myself to the idea of loving again.  Wouldn’t it be a sad legacy for the man who taught me to love, if I never loved again?   And wouldn’t it be a sad burden for my children to see me on the sidelines of life without someone to care for me the way their dad cared for me? I know what Neil wanted and didn’t want… he didn’t want that.   He wanted me to be cared for.  He wanted our kids to be carefree.  So….after too many hours of studying the topic, consulting with the committee in my mind and watching everyone else in my life move forward in theirs, I’m moving forward also.  Honoring him with every breath I take.  Honoring myself too.   And feeling lucky indeed that I have found a second wonderful someone – with broad enough shoulders to take on all of this – to care deeply for me.  It was unexpected and it is lovely.

I also opened myself to helping LiveLikeLou evolve into something even Neil couldn’t imagine!  We are now The LiveLikeLou Foundation, a stand-alone not-for-profit entity with a national reach.  Our purpose remains to raise awareness of ALS, provide support to ALS patients and their families, and to grant funds to find a treatment or a cure.  Our largest donor/partner is the Phi Delta Theta Fraternity (Lou Gehrig was a brother… so was Neil!), and they have pledged to raise $4 million in 1848 days (4 was the Iron Horse’s jersey number; 1848 is the year of the fraternity’s founding).  But donations and grants will hopefully come from other sources too – watch Facebook and Instagram for communications as our donation portals evolve.  I am the Foundation’s director and a board member, along with four other talented and dedicated volunteers.  We are forging relationships with partners to get direct benefits to ALS families and to promising ALS research in North America.  This evolution of LiveLikeLou from a Pittsburgh grassroots effort that raised more than $4 million through the might of hundreds of volunteers, to a bona fide national entity with the loyal support of 160,000 Phi Delts, was also unexpected and it is lovely.

I am eternally grateful to our volunteer advisors of the ‘1.0’ version of LiveLikeLou including Shawn Alexander, Liz Corradino, Jeannine Dittoe, Greg Farrell, Kim Fleming, Mark Gladwin, MD, Jason Harrison, Anne Lewis, Tom Petzinger, Theresa Schroeder, Chuck Stout, and Fred Thieman, and to our friends and partners at The Pittsburgh Foundation – especially Yvonne Maher and Lindsay Aroesty.  And to the hundreds of fearless, funny and determined family and friends who raised money for us along the way – we will never forget you.  The money you raised will always, always be used for the cause of ALS.

Fathers Day bike ride – 2018

This will be the last entry to my “Suzanne’s Blog”.  Along with all the past entries it will be deleted in the weeks to come as we grow LiveLikeLou ‘2.0’ into a new website with a bigger purpose than just ‘Neil and Suzanne’s Journey with ALS’.  It was terrifying to love someone who was dying.  It was clarifying to force the experience into so many words.   It was therapeutic to write about the living that happened along the way.   And it was the surprise of my life to have people read my thoughts and say something kind back – they were the virtual hugs I needed to get through the millions of sad moments.  Neil and I didn’t always get things right in our life together, but our choice in those first awful days after his diagnosis June 29, 2011 to be open – really open – with this journey, gave me and the kids the support we needed, and gave him what he needed to Live Like Lou.  I’m pleased for Neil… that if he couldn’t be here to help us live lives of purpose, he set it up so we would … without him but always in his honor, with the deepest love, and starting from a place of gratitude.  Me.  The kids.  We are going to be okay.  And we will Leave ALS Better Than It Found Us.

I’ve learned Every Ending – even the ones we dread and hate and fight with every tooth and nail and dollar and prayer and tear and mighty friend and bit of strength we can muster – Leads To A Beginning.  It may not be the one we planned for, worked for, prayed, hoped, whatever for… but a beginning nonetheless. Our challenge is to accept the endings and move ONWARD with the beginnings we get.  Because courage is contagious.  Life-giving actually.  And if we are lucky, it can lead to unexpected and lovely 2.0s.

With love and gratitude for every single day…