November 2015 – Look.

shirts 7 - feb 2015 neil in ht shirtNeil wanted you to see this picture, taken just weeks before his death earlier this year.  Before the Stephen Hawking movie brought home the horrors of living with ALS and before the remarkable ice bucket challenge, back in 2011 when Neil was diagnosed hardly anyone had heard of ALS let alone known someone with it.  It was then that Neil decided to use his journey to show anyone who would look exactly what ALS does to a husband, father, son, brother, neighbor, friend.  His plan was to have his body photographed periodically, all the way up until his death, including all the breathing, feeding and care devices he expected to use for years to come – because he didn’t expect to die any time soon.

Our friend Duane Rieder, an acclaimed Pittsburgh photographer and founder of the Roberto Clemente Museum, didn’t hesitate when we asked him to take Neil’s pictures.  Duane is a baseball historian and he loves the art of telling a good story with good pictures.  He committed to record Neil’s entire progression with ALS –helping us to shine a light on the ravages of this disease.

And then, Neil being Neil, he decided he would tell an even better story with this photo exhibit of his disease – the story of gratitude for his lucky life.

He called it “Journey of Strength – A Photo Progression of ALS and Gratitude.”

It was about the t-shirts.

Those who knew Neil are aware of his journey filled with personal challenges, discovery and hilarious stories.   They know Neil looked upon his life as thousands of moments – one after the other – helping him to become a stronger, better version of himself.  The t-shirts symbolized a set of life-transforming experiences and affiliations that changed Neil’s world-view and shaped him into the man he became.  He chose the organizations for which he felt immense gratitude – because the people he met along the way gave him so much.  And although he knew his life would be cut short, Neil still often said, “I have never been hungry.  Never been lonely.  Never lived in fear.  I am lucky.”

Through the imagery of the t-shirts you can see Neil’s body becoming weaker from ALS – eating away at his arms, his hands, his legs, his face.

The last t-shirt Neil wore for the photo series was the first t-shirt he wore while in his wheelchair.  He wanted to save the Hefren-Tillotson shirt for this shot to show gratitude:  when Neil learned his legs would no longer carry him, our Hefren-Tillotson family did.  You wouldn’t believe how they rallied when we learned Neil had ALS!  Fundraisers, parties, charity walks, bike rides, golf outings, lemonade stands, phone calls, loving letters, meals, home modifications, more fundraisers!  As you know, after accepting the diagnosis and the disease that would take his life, Neil designed a new vision for his remaining days and a purpose called LiveLikeLou.  But he was very humbly aware…. none of that would have happened without the HT family who lifted us up in such meaningful ways.  And none of it would have happened without our family who jumped in with both feet, our friends who became like family, and strangers who became dear friends…

Neil was proud of this photo exhibit and had plans for more t-shirts… he wanted to wear a Fox Chapel Foxes shirt next, a Boston Terrier shirt, Lou Gehrig, Neil Diamond of course, Phi Delta Theta, and shirts from Abby and Patrick’s colleges.   He probably would have eventually gotten a shirt with his brothers and sister on it.  Maybe even one with my picture too.  And his grand-children.

Neil was always looking forward, though gratitude was always his starting point.

Thank you for being a part of Neil’s Journey of Strength – see the entire photo series here.

Happy Thanksgiving and Love,

Suzanne

 

neil from shoulder in chair