Friends, family help Philly artist with ALS stage story of a lifetime

In 2009, Philadelphia poet, musician and actor David Simpson decided to write and star in a one-man play about his life as a blind artist coming to terms with success, religion and family relationships.

But in 2012, just as production got under way, Simpson was diagnosed with ALS and was no longer able to perform.

Still, the show carried on, the role was filled by a friend and — with Simpson in attendance — it debuted at an Elkins Park church Thursday night.

In “Crossing The Threshold Into the House of Bach,” Simpson reflects on his youth, his parents, meeting his first love in college, and his relentless pursuit of mastering the organ.

Simpson spent a year in Paris in the late 1970s studying organ under Andre Marchal, and the play reveals his struggle to live up to his mentor’s expectations He also touches on his lifelong guilt over not believing in God, despite his family’s wishes.

The battle with Lou Gehrig’s disease has left Simpson wheelchair-bound and unable to speak well, but he said writing the play in a way helped him find peace.

“I think writing the play gave me a real opportunity to work on the way I’ve had to accept the changes in my life all along, from not becoming a famous organist, to not being able to be the performer in this play,” said Simpson.

“I’ve come to see that perfection is not the ultimate measuring stick. It’s great to go for the highest caliber of art, the highest standard of living and loving in this world, but I think I’m much more at peace now, and I’m very pleased with the way the play came together.”

Twin’s perspective

His twin brother, Dan, who is also blind and a musician, said it was incredible hearing his brother’s life unfold as a work of art on stage.

“It’ll never replace him, but I feel like this is a snapshot of what his heart and mind and being were all about,” said Dan Simpson. “I just feel so happy that he finished it and got to be here for it.”

Dan regularly travels with his brother to the neurologist, and the brothers talk about the chance of Dan also getting the disease. Since ALS is genetic in only about 10 percent of cases, that seems unlikely.

“It doesn’t mean that I won’t get it, I just don’t know,” said Dan. “I kind of think I can’t worry about it too much because it either will or it won’t happen, and I’m mostly really focused on being with him, and living my life as well as Dave’s living his.”

Director Mimi Kenney Smith has known Simpson for 16 years, and her Amaryllis Theatre Company recommended him for an Independence Foundation Fellowship, which gave him the freedom to write the script and compose the music.

She said the script was nearly completed by 2012, when Dave was diagnosed with ALS.

“He did a reading of the play after his ALS diagnosis in his living room,” said Smith. “He made all the sound cues himself. It was amazing. and I just felt like, ‘Oh, God, I wish he could do it! I wish he could really do this play.'”

A sense of urgency and a sense of humor

To fill in Dave’s role, Smith reached out to fellow actor and friend Michael Toner, who had acted with Dave in a former Smith production.

“Dave himself is a wonderful person, a brilliant guy and a really great artist,” said Toner. “I heard the special thing that was going on with him, and I said of course I’ll do it. When I got the script, it just moved me to tears in parts … this is a really rich script, a really beautiful piece of work.”

Smith stayed in touch with Simpson almost daily during the production despite his worsening condition. She said she would have done anything to make this happen for her friend, who may only have a few months left to live.

“I don’t think I could have lived with myself if I wasn’t able to put this together,” said Smith. “We didn’t have the money to put it together, but I just felt like we had to do it, we had to make it work.”

She said one of the best parts of the play is his sense of humor, and that despite the seriousness of the topics, the audience was still able to laugh.

“That’s the essence of Dave; he’s just so funny,” said Smith. “And we all know that this is the last time that we’ll be able to celebrate that, and that’s what really drives us, because we want everyone to be there and to know how great he is, to know what a fantastic writer he is and what a fantastic person he is.”

The play is scheduled to run June 12 and 13 at St. Mary’s at Hamilton Village, the Episcopal Church on the campus of the University of Pennsylvania, but both Smith and Dan Simpson hope it can be extended even longer.

“Knowing that our time with him is limited, I just feel like this is one of the great gifts of art,” said Dan Simpson. “I don’t know just how tough things can get until he’s actually gone. I’ve never been this close to somebody regularly who’s dying, but I hope I can do it as well as him.”