It's not a lecture, but words will last
Final days of 'ordinary' hero battling terminal illness show how countless acts of everyday bravery go unnoticed
By Rex W. Huppke | Chicago Tribune reporter
August 10, 2008

It would be fine if you never read this story. It would be fitting, in fact, if Ken Jacobsen Jr. simply died and took the details of his 47 years with him, left his legacy only in the minds of those who knew him, knew his fascination with Batman and his political activism and his sometimes naughty sense of humor.

It would be fine because it happens every day. A Kenny Jacobsen faces a terminal illness, comes to grips with his fate, puts his affairs in order and dies. He doesn't give a final lecture or write a book. He isn't heralded for his guts and compassion. He just dies, and that's that, and that's just fine for Kenny.

He says the inner circle is what matters, not the masses, a point that may have been lost in the deserved acclaim received by Randy Pausch's best-selling book, "The Last Lecture," based on the dying professor's final words of wisdom to students at Carnegie Mellon University.

In the end, Kenny Jacobsen's really not that different from Pausch, who died July 25. The Chicagoan is just one of the many everyday people figuring out the right way to die, showing us that most acts of bravery in the face of death are daily happenings, conquests quiet and unnoticed. Meet Kenny and you'll understand.



Summoning bravery
Even before he knew he was gay, Ken Jacobsen Jr. had a thing for muscle-bound men in tights, for superheroes, and Batman in particular. Maybe the colorful BIFF! and POW! of comic book justice taught him something about bravery, but it didn't warn him what a bummer it would be when bravery actually had to be summoned.

He was diagnosed last January with amyotrophic lateral sclerosis—Lou Gehrig's disease—and guaranteed a short life span and a rapid deterioration of motor skills.

His ability to speak was the first thing to go. For a man who lived to gab, it seemed a villainous trick. Before long the disease stole his once unstoppable gait. Friends say he would crisscross the city on foot, walking from his North Side apartment to City Hall where he worked on task forces to promote gay rights.

"He walked everywhere," said Pam Rempala, the wife of Kenny's cousin and one of three caregivers he calls his "angels." "A lot of people would joke that he had legs of steel."

Now he can't move those legs. He can control his left arm enough to scrawl words on a small dry-erase board. He can't stand or chew.

None of this has surprised him. Immediately after the diagnosis, he immersed himself in literature on the disease. He wanted to know what was coming. He wanted the people around him to know as well.

Within two months of learning his fate, Kenny had prepared a living will and given the friends and family members who would be caring for him books filled with specific instructions, riddled with his trademark wit. He wrote that once he could no longer eat solid foods, "Liquids should be thick like a strawberry milkshake, [strawberry] Ensure, or whole milk. Take note too that I emphasized strawberry, something I love!"

His three angels — and a second cousin he refers to as Bosley, thus rounding out the "Charlie's Angels" theme — joined him on "field trips" to funeral homes so he could plan his memorial service. In his instructions he wrote:

"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."



For the pastor conducting the service, Kenny wrote a six-page life story, with an accompanying list of accomplishments, a legacy that at least those who knew him would be reminded of. A stint as a ward precinct captain; founder of a gay and lesbian association on the Northwest Side; president of a gay men's leather club. Stories of sweet potato dishes at Thanksgiving dinners and a one-time romance that led him to Florida then back to Chicago with nothing more than a parting gift of "tacky, red flatware."

Kenny showed everyone around him how a life is condensed, everything superfluous stripped away until there is only the bare essence.

"I think it's awe-inspiring," said Maria Conde, another of Kenny's angels and a friend of nearly 30 years. "From day one, it's like everything is so organized, all cut and dry. This is what I need to do, there it is, all set. He's just been so level-headed. And here he is, he's good-natured and happy to be with people."


'I'm OK'
In an e-mail, the easiest way for Kenny to communicate, he succinctly explained his approach: "I try and let family and friends know I'm OK; as I really am."

As his life winds down, Kenny spends time at his computer, the one place where he still has a voice, typing notes to friends, corresponding with others who share his disease and even organizing a team for a benefit walk for people with Lou Gehrig's disease. The team is called Kenny's Heroes, and they'll wear a logo he drew featuring an array of superheroes, caped residents of a fertile mind.

The instructions to his angels detail his wishes once he can no longer write or type: "I will be aware always of what you and others are doing. So never allow anyone to think they can't still communicate with me even in the most extreme circumstances. I will want that communication, even if it appears one-sided."

He concludes: "And hell, have someone pick up some Batman comic books to read and show me during those times."

Apparently even the brave need heroes. Even the ones that are heroes themselves.

rhuppke@tribune.com

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