November 2017 – To Everything There Is a Season…

Neil and Suzanne – 1989


I came home recently to Abby bubbling with excitement over a “find”.  She had come across old photo albums she hadn’t seen.  Not the photo albums that are dedicated to The Life and Times and Abby and Patrick (there are 8 of them so far!), but the photo albums that are of our 12 years together “pre kids”.  Dating back to when I was a college senior and had fallen in love with a very handsome LAPD Police Recruit named Neil.

I swear on a stack of bibles these are things my teenager said:

“You were so cool”

“I love your big metal glasses and your hairstyle.  So retro!  Like artsy 80s”

“I never really thought of you as young.  Or normal. I only thought of you as my parents”

The pictures were from our LA days – on the beach, with cop friends, his friends from New York City and all their urban-ness, our days in graduate school at Pitt when pizza parties were still a splurge.  Forgive me for bragging, but indeed we were cool (haha!), and my big permed hair and Neil’s acid washed jeans were absolutely “artsy ‘80s”.

A friend said to me recently that she thinks of her life in a series of five-year “seasons”, and going through the photo albums that evening with Abby highlighted my seasons for me:  High School.  College.  Newbie Careers.  Early Marriage.  Cute Babies.  Crazed Mini-Van Warriors.  Got-Our-Act-Together-Grown-Ups (or at least pretending to be).  I was overwhelmed with a feeling of I want those days back!

Last month I had my first “let’s talk” conversation with a specialist about the years-long pain in my lower back.  My doctor actually said the words, “Look.  You’re not a teenager anymore.  Aches and pains are to be expected.”  He showed me the MRI, which indicated nothing remarkable, and used the terms “a little arthritic”, “slight bulge” and “take ibuprofen”.  I wanted to laugh/cry – I couldn’t believe what I was hearing.  After weeks of physical therapy and core strengthening routines, my complaints were still the same. And when I was asked by this expert, “You’re fifty now, right?” I was appalled… I still had 8 days to go at the time!

Sooooo it appears I am entering a new season (need a pithy term for it… something to do with aches and pains).

And I am reminded of the truism that really nothing is for keeps.

My Buddhist/Yogi friends tell me, in fact, nothing is ours to begin with.  Not our possessions.  Our health.  Our loves.  Our children.  They just pass through us on their journey to the place they are supposed to be.  You can’t hold onto a cloud, as the saying goes.  Our job, they say, is to learn from each other during the times we are together.  To treasure them.  To let life happen.  To allow differences to exist and change to transpire.  To let go.  Obviously this is the abridged version of what I have been told – and I’m not sure letting go of my beloved husband and children will really ever be something I achieve.  But, you get their point… endless clinging to what is limits what is to be.

So these notions of seasons and change and letting go have been bumping around in my mind as I have been thinking about a big change for LiveLikeLou.  A game changer actually.

In the nearly 1,000 days since Neil left us I have spent the time mostly mourning, or trying not to mourn, or pretending I’m not mourning, and guiding our children through mourning.  Attempting to lead us to some other side.  To let life happen.  To let go.  Along the way LiveLikeLou has been a constant touchstone to connect us to Neil, to a higher purpose and to everyone else who played a very supporting role in this journey.   And then last March we announced “We Did It!” – we had raised the $2.5 million pledge to The Live Like Lou Center for ALS Research and the $1 million endowment to support ALS patients and their children in Southwestern Pennsylvania entirely through grassroots efforts!  It was an amazing, humbling moment – I know Neil was giving a STANDING ovation from above!

I thought we were done.

I thought that that the active, large-scale LiveLikeLou fundraising was basically over, and that we would become more quiet, just carefully granting the monies we have raised to ALS research and ALS patients forever.

I thought the change I was facing would be to let LiveLikeLou go.

I was wrong.

I got a phone call.

Which led to a conversation.  Consultations with family and friends. Negotiations.  A couple lawyers.  A contract.

And now this announcement… I am so pleased I could burst!

This month, through a new partnership with Phi Delta Theta International Fraternity, we will launch “The LiveLikeLou Foundation”, a stand-alone 501c3 not-for-profit entity with a national scope.  Lou Gehrig himself was a brother of Phi Delta Theta when he attended Columbia University until 1923.  The Fraternity, established in 1848 in Oxford, Ohio, has claimed ALS as its primary philanthropic cause for decades… recently raising hundreds of thousands of dollars annually to support ALS research and patients across the country.  Neil was very proud to be initiated as a Phi Delta Theta Brother in 2012!

The LiveLikeLou Foundation will build upon the LiveLikeLou brand and grassroots effort we started in 2011, and expand it through the Phi Delta Theta network of nearly 165,000 living members and 190 chapters on college campuses across the country.  This means new fundraising mechanisms, new outreach to broader communities and a more meaningful impact on the disease for years to come.  It also means that an entirely new, nationwide population of young men, along with their families, friends and communities will grow to know our story and become engaged in the cause of ALS.  And while our research center at The University of Pittsburgh and our fund at The Pittsburgh Foundation will always support ALS here in the Pittsburgh Region, the new Foundation will identify and choose new initiatives for directing the funds raised… long into the future!

As Neil’s wife and the connection to LiveLikeLou’s history, I will have a seat on the board of the new Foundation, to be passed to Neil’s sister Shawn or Abby or Patrick one day.  And…I will actually end my stint as a volunteer and begin working for the Phi Delta Theta Fraternity to help launch this new organization with the goodwill, determination and might of the Phi Delts leading the national charge.


It’s actually unbelievably perfect that LiveLikeLou was started by a Phi Delta Theta brother (Neil), in honor of a Phi Delta Theta brother (Lou), and will be carried onward by all the Phi Delta Theta brothers.

(Sometimes I feel like Neil has been orchestrating this all from beyond.  Those who know Neil would say “Yep, he definitely is orchestrating this all from beyond.”)

If I could give you a gift it would be a glimpse from my eyes, the number of ways and millions of times people have passed through my life with kindness during our journey with ALS.  Across all the typical boundaries of age, religion, politics, economics, education.  Across life stresses and pains and distractions of everyday stuff.  Across indifference too.  I have seen beauty, generosity, humility and authenticity step across whatever might otherwise divide us to give me or my kids a lift, or give LiveLikeLou a shout-out, time, financial gifts…

And it’s entirely because of your generous support that this unexpected letting go of LiveLikeLou feels so right.  It will safeguard the heart and hard work we have brought to this effort.  It will expand our network of supporters beyond what any of us imagined.  It will ensure that our inspiration to live like Lou Gehrig and Neil, with determination and gratitude, is remembered.  And it will keep ALS patients and research to find a therapy or a cure for this disease always in our sights.

Here’s the Phi Delta Theta press release on this news sent out today.  Please watch our posts on Facebook in the weeks to come for more updates on these changes.  Our website will change over the next few months.  Phi Delta Theta’s website will change too. New faces and voices will emerge.  But our purpose – To Leave ALS Better Than We Found It – will never change.

ONWARD, and Thank You Friends…for all of it!