A Teachable Moment. A Surprising Question. And Neil’s Choice.
By Suzanne Alexander
I want to tell you a story. It’s a lesson I learned for how to live through really hard things when living at all seems impossible. I had a front-row seat in one man’s journey from a healthy, happy life, to a life filled with a lot of loss. Loss of normalcy, loss of frivolity, loss of hope, and ultimately life itself. In the process, I watched Neil Alexander transform from a regular guy to a Great Man.
It is funny that I call Neil a great man because I knew him ‘back when,’ if you get my drift. A twenty-three-year-old recent college graduate with an unremarkable GPA, a lot of confidence, a quick wit, a dashing smile, and five dollars to his name, but he was enough for me. We built a wonderful life together, pretty satisfied with being unremarkable.
Then there was that teachable moment. Not the moment you would expect me to write about, as the widow of a man whose life was stolen by the 100 percent fatal disease Amyotrophic Lateral Sclerosis (ALS). Not the moments of confusion, confounding aches and pains, baffled doctors, and unhelpful test results for years leading up to his diagnosis either. And not even the moment of his death, something that I still can’t write about.
It was a different teachable moment, as I sat across a room and watched my husband describing his newly-announced diagnosis to a local newspaper reporter as if he was describing a legal case . . . with a dry description of the symptoms, his prognosis, and some colorful dark humor.
It started with the reporter’s surprising question.
It was an obvious question. One that everyone wondered, but no one had dared to ask. Not even me. The mighty Neil Alexander was in his corner office, with floor-to-ceiling windows and a beautiful view of his beloved Pittsburgh, with framed photos of his healthy wife and kids and advanced degrees on display. The room was filled with devoted co-workers and friends prepared to be quoted for the newspaper article and to express encouragement for him upon his early retirement because of ALS.
The story headline: Local Executive Bravely Faces ALS Death Sentence
The reporter’s surprising question: “Are you angry?”
This was the first time I heard Neil speak publicly about the awful hand he had been dealt. As a forty-seven-year-old successful business leader and attorney, with healthy habits, a loving family, and every expectation of growing old comfortably, it was a shock that doctors were now telling him: “There is no treatment. There is no cure.”
They told him, “Two to five years.”
They said, “Do what you love in the time you have left.”
That was it.
Privately well, that was tough. Our kids were nine and seven years old. How could it be? The constant state of grief was paralyzing.
Publicly, that was something else. Neil finally had the answer to the strange twitches, muscle pains, and fatigue. He was almost relieved that he had a name for the mysterious physical maladies he had endured for two years before his diagnosis. So to his friends and newspaper reporters, Neil put on a brave face and voiced a brave conviction that he would fight this disease with everything he had. He would beat the odds and live to see his kids graduate high school!
The human drama of Neil’s diagnosis prompted a lot of interest in those early days. Local reporters called regularly to write Neil’s story of determination to live. He was glad to share his thoughts because he wanted, ultimately, for his kids to one day read his story and follow his example in their own lives; having a public record would be helpful, he thought. So much positivity surrounded Neil as he proclaimed his goals to fight that we nearly forgot the grief and terror of his ALS death sentence.
So the reporter’s probing and personal question felt a bit obtrusive. As if she was looking for a crack in Neil’s veneer to give readers something more intriguing to read.
“Are you angry?” she had asked.
I knew Neil was sad. I saw him cry. Once. On the day of his diagnosis but never again. Years later he revealed to me, in private of course and toward the end of his life, that he cried every single day.
Neil said, “Suzanne, sometimes a good cry just feels good.” And then, he laughed, “You wipe your eyes, check your nose, and get back to work.”
Apparently the act of crying, for Neil, was a private and daily self-care routine that allowed him to focus on his losses and then, once refreshed, decide what he was going to do about them. I love that he shared this lesson with me and I can now share it with his kids. I agree that crying feels good!
But, I was not prepared for this deeply private and evocative question “Are you angry?” to be asked in a crowded room, and for Neil’s answer to possibly become the newspaper story headline: Local Executive Is Angry About His Losses.
We all just watched as Neil answered the reporter’s question with such conviction it seemed he had spoken the words before. But, I can attest, he had never spoken the words before:
“Look,” Neil said. “I have never been hungry. I have never been lonely. I have never lived in fear. I’ve had a good life. I don’t want to die. But I’m not going to start complaining now.”
Neil was lying!
Of course, it’s true he didn’t want to die, and amazingly Neil never did complain. But the rest of it simply wasn’t true.
Neil did actually experience hunger in his life. He did live through excruciating periods of loneliness. And he did have moments of palpable fear, both as a child and as an adult.
I’ve come to learn that most people read the quote from Neil and thought, “Wow. What a good man to show such perspective and such acceptance for his terrible fate!”
But this is the lesson that Neil taught me in that moment: He wasn’t showing perspective, and he was not accepting his terrible fate. Neil was making a choice, just as he had so many times before.
He chose to forget he lived with periods of hunger, loneliness, and fear in his life.
He chose to fight for that unremarkable GPA despite those factors in his early years, to fake that young graduate confidence, to tell a few jokes, and give us all a dashing smile when he only had a few dollars to his name.
He chose to push through the strange twitches, muscle pains, and fatigue, and to keep pushing his doctors for the answer he really didn’t want to hear.
He chose to cry as a daily practice of self-care because life was hard. And he chose to never let me and his kids see him cry.
Then, when pushed by a reporter with a probing and personal question, Neil chose to focus on all that he still had—his family, friends, job, community, time (he still had time)—and he said, “I’ve had a good life.”
When the easy, expected answer was to focus on all of his losses and show anger and sadness, Neil focused his mind and chose to focus on all that he still had. He chose to live his remaining days with gratitude.
Of course, The Iron Horse Lou Gehrig played a big part in the rest of Neil’s story and what we are building together because of The Luckiest Man’s example is so amazing. Maybe I’ll write about that next. But for now, I hope this lesson Neil left gives you an example of how to live through really hard things. When life seems impossible, I hope you choose to focus on all that you still have, and that you choose to live your remaining days with gratitude, too.
It’s a choice.
Suzanne Alexander is the co-founder and director of The LiveLikeLou Foundation, a national nonprofit organization she started with her husband Neil upon his diagnosis of ALS in 2011. Neil died from his disease in 2015. The Foundation’s purpose is to Leave ALS Better Than We Found It, in honor of baseball Hall-of-Famer and Luckiest Man Lou Gehrig, and the more than 16,000 Americans living with this 100 percent fatal condition every year. Phi Delta Theta Fraternity is the primary philanthropic partner of LiveLikeLou and is active in the cause of ALS through multiple philanthropic programs. Learn more at www.LiveLikeLou.org.
