October 2015 – Inspiration

book shelves 4A friend reached out to me on the six-month anniversary of Neil’s passing. I wasn’t watching the calendar and really every day is a hurdle not made different by anniversaries so I wasn’t especially prepared.  But she noticed the date and sent me a note.  She said she misses him too.  Her gesture reminded me that Neil left a bigger void than just the one in our house.  Our community noticed when he was diagnosed, noticed when he entered the room, and stood for him when he couldn’t stand any longer.  Family and friends regularly called him to chat, drove him for outings, invited him to games, visited him for coffee, shopped for his gifts to me on special occasions, and wheeled him to a six-week long beer-tasting class!  Together we witnessed Neil make the remarkable choice, daily, to turn away from the tempting abyss of self-pity and fear, and toward living with optimism and a higher purpose.  He said he had never been lonely, never been hungry and never lived in fear.  He said he was lucky.  He finished each correspondence with the words “Onward – Neil”.   He inspired us.

I have thought hard about how Neil did what he did during his journey with ALS. He was so much stronger than I ever could have been.  He never complained, never got angry, and never once said “why ME?” because, according to Neil that would be the same as saying “why not YOU?”  And when he was alone with his thoughts I believe he looked to heroic role models and stories of great courage for inspiration.  When we stocked his library in the new handicapped-accessible bedroom, Neil chose about 100 of his most favorite books to move over from the family room bookshelves.  He wanted to be surrounded by them.  I look at his choices now and am in awe of the friends that he made in the pages of those books.  These great thinkers – both the authors and their subjects – inspired Neil’s last four years I am sure of it.  He chose a path of perseverance and purpose that would make his heroes proud.

In our house we are all processing our grief at different paces and, I think, mostly productively. Abby recently said that she doesn’t want to be upset about her father and talk about him with sadness.  She said that his life was so much more than just the last few years with ALS.  She wants to remember the specialness of her dad beyond what he did with his illness.   When she hears sympathy about her father’s illness in her heart she rejects the sadness… she said “Dad didn’t lose his battle with ALS.  He WON it.  He did exactly what he said he was going to do, and he’s still doing it.”  I have never said that Neil “won” his battle with ALS – quite the opposite actually.  But I am so glad she feels this way.  Abby is very wise and she inspires me focus on the blessings of our long life together.

Grief doesn’t travel in straight lines across time or space and even now still flows way more than it ebbs.   To get some control I try to choose my moments and allow grief to “visit”.  This is when I hear sounds come out of me I haven’t heard since I was five or six years old and those first pangs of self-consciousness during a hard cry swept over me:  big kids don’t cry out loud.  I find myself sobbing that I want him back and hoping no one can hear me.  Each morning it is a conscious choice to NOT cling to the patterns of our household that used to include him – the coffee, the pills, the paper, the routine.  To not touch his things and breathe in his shirts and wonder from the other room if he needs something.  It’s a fine line: let go of the painful memories that bring me to my knees while tending to the love that we shared so that I remember I had THAT, and our kids had THAT too.  And we still have it.  After each of these visits I work to focus on the fact that Neil wanted the kids and me to live full lives, unencumbered by the sadness that is so easy to get lost in.  He wanted his life to matter and for something good to come from all the vision and work he invested in our futures.

Neil would be so delighted by changes we have seen in the last six months.  The new Hulton Bridge is open and the 28 is construction-free.  The hubbub over the political debates.  The new music and books coming out.  Alan Alda and Tom Hanks all in the same excellent movie.  New 007 and Star Wars movies!  Our Buccos and another solid season.  After 10 years of work our new Community Center is opening.  Abby is now taller than me.  Patrick… well, some things don’t change… he’s still our Patrick.

He would also be VERY encouraged by the funds that have been raised since March. Incredible support pouring in for LiveLikeLou from neighborhood kids to kind donors at every level – I am working to compile the number but it’s safe to say we have collected more than $500,000 since March!  I’ve given up writing individual thank notes – I know it’s terrible but the support comes in waves and mass letters and electronic thank you’s are the best I can do lately.  If you’re reading this and you have supported us – thank you!!  We are making progress toward Neil’s goal of raising $2.5 million for research and funding an account to support ALS families in Western Pennsylvania long into the future.  I will share more details at the end of the year.

Our website is updated – many thanks to nephew Matthew Alexander, sister Shawn Alexander and our friends at The Pittsburgh Foundation. We had a summer packed with fun and very successful events for LiveLikeLou.  We are kicking off the Fox Chapel Area School District fundraisers and telethon for LiveLikeLou and in the coming weeks I will be speaking to kids and teachers across the district’s six campuses about Lou Gehrig, Neil, ALS, gratitude and perseverance.  We have received many new “Where in the World is LiveLikeLou?” pictures from friends wearing the #4 hat all over the world (making us smile regularly). We are staffing up at the $10 million “LiveLikeLou Center for ALS Research” and have hired the lead investigator Dr. Chris Donnelly – he is busy working with the other 150 neuroscientists and their teams at the University of Pittsburgh’s Brain Institute to make significant discoveries about this disease.  And we continue to fund Patient Care for ALS families in Western Pennsylvania, provide their kids with Iron Horse Awards, holiday gifts and scholarships.  It feels good that the funds we have raised in Western Pennsylvania are being spent in Western Pennsylvania, and that we are making an impact.

Because this is a terrible disease.

Because it’s not incurable, it’s just underfunded.

Because helping others in our community is the best way to honor Neil’s life and help his children heal.

Because Neil inspired us to leave ALS better than we found it.


With love and gratitude for every single day… Suzanne