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Chronically Upbeat

A Date with Death

Living a full life with chronic illness

Michael was sharp as a razor until one evening, when suddenly he was not. The brain tumor had laid dormant, grown slowly and then exploded like a grenade in his head. This former 60 Minutes producer, who had traveled the globe in search of stories, was suddenly trapped by a misfiring brain, unable to process the world around him.

See also: Meredith Vieira and Richard M. Cohen stronger together.

Gone was his highly evolved sarcasm and appreciation for nuance. Michael had been a quick study, a quality that every good producer needs. Recently I had hired him to produce two neuroscience videos for Harvard Medical School, where I sit on an advisory council. I was counting on Michael to explain and make visual complicated ideas. He did a great job. I accepted the credit.

I doubt Michael will be with us next summer. As I hobble along with a neurological illness that has robbed me of my vision, attacked my ability to walk, and compromised my use of my fingers and hands, I still expect to wake up one morning next summer, and the morning after that. I am fortunate. I will keep on writing, laughing and living a full life. I will love my family, make jokes about how I hate politicians and all will be right with my world.

This is why I say to my sick and suffering friends, and to anyone who is bogged down by despair, “Look around you. Someone always has it worse.”

Michael’s tumor rests in that area of the brain where signals of depression originate. In Michael, those impulses are short-circuited. The man may be frustrated that he must use a wheelchair because he falls sideways when he stands, but we will never know. His friends wonder how much he understands. We do not know and none of us presume to ask. Michael answers questions but offers no details about his feelings. He may not be able to find the words.

I won’t paint myself as a Zen master of debilitating illness. I see red when my fingers fail me and an object falls from my hands. When I fall, especially in public, I am instantly humiliated and, with fists clenched, I apologize to nobody in particular. My family thinks I have a troubling tendency to beat myself up when things go wrong.

I am not depressed, but plenty of the severely disabled are. I truly hope Michael is spared that.

But perhaps it is the certainty of knowing that death awaits that guides us down the road to a perfect peace.

I have no taste for the prospect of a calm life. I want to be the body in motion, not stuck on an even keel like a small boat on a sandbar. For all of us, life is short. I want to feel. I wish I could engage Michael when his anger is out of control, which happens, or when tears stream down his cheeks and he shakes in despair, which does not. How can his anger get out of control if he isn’t able to express his feelings? The previous sentence confuses me. At least then I would know he is still with us. Other friends believe his numbness is a blessing.

Michael’s friends try to visit in groups now, allowing him to tune in and out as his mind wanders, perhaps to faraway places he has visited or has yet to see. This man is loved and protected from everything around him except for what will get him in the end.

Michael would like it if we took away something useful from his journey. For me, the most powerful lesson is that despite my years of cancer and multiple sclerosis, I am a lucky man. I have a great family and a wonderful life. Things could be much worse.

Also of interest: 6 ways to feel happier, healthier.

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