I wrote the following article for The Philadelphia Inquirer in May 2005:

Wisdom focused by illness; A former boss stricken with ALS sticks to what matters.

The name on his office door said “Anthony Potts” but everyone at the bank knew him as Rusty. He was tall and athletic with red hair and freckles, so his lifelong nickname suited him. He was a former Penncrest soccer player and a competitive cyclist and one of my first bosses out of college. I was often intimidated by his acumen and remember thinking that his brain moved too fast for me. I toiled to keep up with him but learned a great deal along the way.

People worked hard at the bank, so I was nervous asking Rusty for permission to leave early one Tuesday. I stated my case tentatively, pointing out that I would get my assignment delivered on time. Rusty just smiled.

“I haven’t told you about Bicycle Wednesdays, have I?”

“Uh, no.”

“Once the weather gets a little warmer, I try to take off a little early once a week to get in a good bike ride before it gets dark. Everyone needs a Bicycle Wednesday. The work will always be there when you get back.”

Rusty and I became fast friends. Over the next 10 years, Bicycle Wednesdays prevailed. We each took them. Sometimes it was Bicycle Tuesdays or Fridays. Truth be told, I never spent that time actually riding a bike, but Rusty did. It wasn’t what you did that mattered. The fact that you were stealing a precious pocket of time and enjoying it to the fullest was the name of the game.

Rusty took his last bike ride in October 2003.

In late 2001, after having some problems with his speech, Rusty was diagnosed with amyotrophic lateral sclerosis (ALS, or Lou Gehrig’s disease), an aggressive disease that destroys the nerves that allow movement, although the mind remains sharp. You become trapped in a body that is progressively failing. There is no cure; patients usually die within two to four years of diagnosis. Suddenly, for Rusty, every day had become a Bicycle Wednesday, a chance to steal that precious time before it gets dark.

My time with Rusty these days bears little resemblance to the intellectually packed hours we spent working at the bank, with one exception: He remains my consummate tutor in what life is all about.

Visits take me to a modest home in Media near Ridley Creek State Park – the home where Rusty grew up and now lives with his brother Fred and sister-in-law and Karen, their two young sons, and a cadre of nurses who are scheduled around the clock. More than once I have arrived in the late morning to find Fred fast asleep, having substituted for a nurse who had to cancel the night before. Karen always greets me with a smile. She appears effortlessly to manage this household, care for Rusty, and maintain a cheery disposition without missing a beat. The two boys, redheads like their Uncle Rusty, run under visitors’ feet, punctuating each day with giggles, meltdowns, and everything in between. The clutter around the house is a constant reminder of higher priorities for this family. They serve as an endless source of joy and comfort for one another.

Down the hall is Rusty’s room, which has become “command central” for the trivial and monumental tasks of the day. In the last 18 months, he has lost his ability to speak, eat, walk, and breathe on his own. Connected to a ventilator and a feeding tube, he communicates through a computer program that allows him to select words by clicking a mouse with his index finger, a tiny movement that hasn’t abandoned him yet. Conversations are painstakingly slow – especially for someone as quick-minded as my dear friend. But, forever the perfectionist, he makes sure that each sentence is punctuated correctly. During the day, CNBC plays on the TV as he stays in close touch with friends through e-mail. On a recent visit he was coordinating a friend’s participation in ALS Advocacy Day in Washington. This disease will take everything from him – except his sense of purpose.

My visits pretty much begin the same, with a painfully rhetorical question from me to him:

“How are you?”

Thumbs up.

I proceed to chat him up for the next hour, inadvertently slipping in a mild complaint or two and subsequently feeling terribly ashamed. The bad weather and my endless workload are luxuries to someone who rarely gets outdoors and can no longer hold a job. Still, he does not complain. It is clear that he is just happy to be alive each day. On days when I have lost my perspective, a one-hour visit with Rusty knocks it all back into place… and hard. Once intimidated by his intellect, today I am humbled by his courage.

ALS has added tremendous complexities to Rusty’s life, but the disease has also simplified his existence to reflect a few intrinsic truths that are so often lost on the rest of us: family, gratitude, purpose. I haven’t taken a Bicycle Wednesday in quite a while. But it is time to start again. And I think I’ll take my own sister and brother along.

Rusty died on Friday, years after this article was published  and well after his life expectancy given his diagnosis.  I had not seen him in some time, a fact that makes me question my own humanity.  He had lost virtually all movement and communicated through blinking his eyes.  Visits were extremely difficult for me, which is why the time between them got longer and longer.  My ability to rationalize my absence from his bedside (too much to do; not enough time) was nothing but selfishness.  My feelings of helplessness and hopelessness after our visits were nothing compared to what I’m sure he felt on a daily basis.  Shame on me; he deserved better.

I hadn’t thought about Bicycle Wednesdays for a long time – their importance paling in comparison to my never ending to-do list.  The same day Rusty died, my current boss reminded me that I need to take a real vacation this year – one that doesn’t include joining conference calls and answering emails.  Two strong messages – one poignant and sad, the other pragmatic and direct – that life isn’t about doing – it’s about living.  And I need to get better at that in more ways than one.

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