I recently spoke at a healthcare conference in an exquisite tennis and golf resort outside of Tampa. On Sunday morning, I was lounging on the porch of a lovely condo, reading the New York Times delivered to my doorstep.
A fresh pot of coffee, uninterrupted hours . . . this is my kind of Sunday morning treat. When I took a break to sip my coffee, I looked out onto a Florida Everglades scene with turtles swimming and heron and egrets wading and moving harmoniously in a graceful, feathered ballet.
A front-page story captured my attention (NYT, 11/7/04). It was about two middle-aged professional men with Amyotrophic Lateral Sclerosis (ALS, or Lou Gehrig’s Disease), a progressive, paralyzing disorder that quiets every muscle in the body. Your mind stays intact but your body is totally paralyzed. From the time of diagnosis, the average life span is 3 to 5 years.
Dr. Jules Lodish, a hematologist and oncologist, has been living with ALS for 10 years. The only muscles he can still move are slight twitches of his cheek. In this condition, he has helped develop a computer program that electronically converts his twitches via a sensor attached to his glasses. The computer translates the twitches into words that allow him to communicate. In this “locked-in state,” he has managed to write a 30-page manual that sets the standards for how to create sterile environments for ALS patients. He now advises ALS patients and their families about how to organize their own care and use the communication device he has mastered.
Dr. Lodish says he communicates with more people now, than he did when he was able-bodied. He sits strapped to a wheelchair while a machine breathes for him through a tracheostomy tube in his throat. He still looks forward to every day and says, “I still have quality in my life….quintessentially, I have found that ambulation, movement, swallowing, eating, talking, breathing, and self-care, are not me. They are substantial physical losses; but they are not me….Who I am, is what I have always been, a father, a husband, a friend.”
Not everybody with the disease makes the same choices as Dr. Lodish. At least 90% of patients with ALS decide to die when they can no longer breathe on their own. Even though it’s clear that commitment and medical science can extend their lives much longer, the tracheostomy surgery and going on the lung machine, marks the dividing line between living naturally and being kept alive artificially. I think Dr. Lodish is a hero on his life’s journey. He provides living testimony that if what you are is still something you want to hang on to, then you can do it. I also think those who choose the other path are heroes too.
You don’t have to wait until your last muscle twitches to ask if your life has meaning. Make your life a hero’s journey by knowing that the quality of your life is acceptable and meaningful, and you will look forward to every day.