Gehrig's disease patient saw death as matter of fact
By Rex W. Huppke | Chicago Tribune reporter
September 30, 2008
In Ken "Kenny" Jacobsen Jr.'s final days, when Lou Gehrig's disease had stripped him of nearly everything but his nimble mind, he asked a hospice nurse what his options were. One was to stop eating, to speed the end.

Mr. Jacobsen had already lost his ability to chew and relied on a feeding tube. He had been living for months with his cousin, Leo Rempala, on the Northwest Side. Rempala cooked him meals, and ran each feast through a blender so his cousin could enjoy it.

Perhaps as an inside joke, or perhaps as a show of appreciation, Mr. Jacobsen told the nurse he still wanted to be fed.

"He said he still enjoyed eating," recalled Rempala's wife, Pam. "Even if it was his cousin Leo's cooking."




It was that sense of humor, even in the face of death, that endeared Mr. Jacobsen to his family and friends and to Chicago Tribune readers who met him in a profile story Aug. 10. That story came on the heels of the death of Randy Pausch, a Pennsylvania college professor who, facing terminal cancer, gave a last lecture to his students that became an Internet sensation and led to a best-selling book.

The story presented Mr. Jacobsen as an example of one of the many everyday people who do exactly what Pausch did: bravely confront impending death and prepare loved ones to carry on.

Mr. Jacobsen, 47, died Saturday, Sept. 27, in his cousin's home.

"He was ready to go," said Pam Rempala. "It has been a long year. But he stayed positive, every step of the way."

A lifelong Chicagoan, Mr. Jacobsen was a bustling and politically engaged man, a member of task forces and advisory boards that promoted gay rights in the city. He served a stint as a ward precinct captain, founded a gay and lesbian association on the Northwest Side and was president of a gay men's leather club.

Mr. Jacobsen inspired his family and friends with his fastidious and pragmatic preparations for death. He gave specific instructions for his funeral in a living will:

"I want the service to be of celebration not of sadness. I want people to come as themselves, as I have known them, and not something they feel is necessarily appropriate in the attire to attend a funeral. I want folks to bring balloons and markers; and if they don't know what to do with them then they should write a note on the balloon and let it go; and I'll be sure to get it."

Mr. Jacobsen, even when he could only communicate in writing or by e-mail, seemed to savor his life, regularly flashing a mischievous grin and eagerly awaiting weekly trips to a nearby comic book store. He had never let go of his childhood love of comics, Batman in particular.

Fittingly, his family will have him buried wearing his favorite Batman tie.

He is survived by a sister, Cindy Fulton.

A service will be held at 10 a.m. Tuesday at Cooney Funeral Home, 3918 W. Irving Park Rd., Chicago.

rhuppke@tribune.com

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