In The Art of Dying, I tell the story of a man with ALS, or Lou Gehrig’s disease. Struck in middle age with a slowly progressing disease that would kill off his motor nerves, eventually leaving him unable to breathe, Jim experienced a rebirth. It wasn’t sudden or without deep struggle, but through the disease, Jim grew closer to God and found a new calling–one that he embraced with full vigor. He later said to me, “I would rather have ALS and be where I am now spiritually, than to have not gotten the illness.” [my paraphrase]

Knowing that we face a terminal illness–while not without its difficulties–can bring us all to a new sense of hope and meaning, even  in our last days. That’s what I saw again in this wonderful profile of the Chicago Sun-Times film critic Roger Ebert.

For Ebert, throat and mouth cancer have been disfiguring and painful. It has also left him unable to eat or talk. The man who spent his life on TV discussing movies is now forced to communicate through a computer. Yet, Ebert has found a new voice in his blog.

The full profile is well done and deserves to be read. But this short excerpt describes how Ebert began his blog and what it now means to him.

In 2008, when he was in the middle of his worst battles and wouldn’t be able to make the trip to Champaign-Urbana for Ebertfest — really, his annual spring festival of films he just plain likes — he began writing an online journal. Reading it from its beginning is like watching an Aztec pyramid being built. At first, it’s just a vessel for him to apologize to his fans for not being downstate. The original entries are short updates about his life and health and a few of his heart’s wishes. Postcards and pebbles. They’re followed by a smattering of Welcomes to Cyberspace. But slowly the journal picks up steam, as Ebert’s strength and confidence and audience grow. You are the readers I have dreamed of, he writes. He is emboldened. He begins to write about more than movies; in fact, it sometimes seems as though he’d rather write about anything other than movies. The existence of an afterlife, the beauty of a full bookshelf, his liberalism and atheism and alcoholism, the health-care debate, Darwin, memories of departed friends and fights won and lost — more than five hundred thousand words of inner monologue have poured out of him, five hundred thousand words that probably wouldn’t exist had he kept his other voice. Now some of his entries have thousands of comments, each of which he vets personally and to which he will often respond. It has become his life’s work …

“It is saving me,” he says through his speakers.

God save you, too, Mr. Ebert.


4 thoughts on “Roger Ebert’s New Life Before Death

  1. Rob, remind me some time to tell you a story about a client I had with ALS. A fascinating tale of illness and dying and urban hospitals and what happens to the elderly when no one is paying attention.

  2. Pingback: Exploring the Art of Dying

  3. Pingback: This Week’s Top Five Reads « Exploring the Art of Dying

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