Gratitude for life
 

Callison: Gratitude for life
Dying from ALS, Bill Rice conveys hope, faith, humor

By Jill Callison
jcalliso@argusleader.com

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Bill Rice is dying of bulbar ALS. He is speechless and needs a feeding tube because the disease has disabled his chewing and swallowing capability. Rice communicates by writing his thoughts down on a dry erase board.


This could be the last time Bill Rice gathers with family on Thanksgiving.

He celebrates his 74th birthday today, knowing it, too, could be his last.

Rice won't be able to taste the holiday turkey or savor a bite of birthday cake because the disease ALS has taken away his ability to chew, swallow or sip through a straw.

Sometimes, he has to remind himself to breathe.

He has been voiceless for months.

But don't pity Bill Rice.

He doesn't pity himself.

He doesn't ask, "Why me?"

When he received a diagnosis of amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease, instead he thought, "Why not me?"

Rice writes those words in firm black capital letters on a dry-erase board. That board is his primary form of communication these days.

Rice has what is known as bulbar ALS, which affects the throat first. ALS strikes more men than women, and the prognosis tends to be worse for older patients and those with the bulbar form of the disease.

Rice also writes letters. A daughter, a social worker in Vermillion, has "introduced" him to a client without family members. They are now pen-pals.

Rice used a legal pad to write down his thoughts after reading a column that ran in this space four weeks ago. In it, University Center professor Doug O'Neill talked about a class he teaches on death and dying.

It prodded Rice into becoming a professor himself, sharing his thoughts with O'Neill and O'Neill's students.

"For the last three years, I have copied the following in my planner: I asked God for all things that I may enjoy life. He gave me life - that I may enjoy all things."

Rice first wrote that down when he still could referee middle-school football, drive cars two days a week for Sioux Falls Auto Auction and ski at Great Bear, Mount Kato and Terry Peak.

But even when he lost all those things, when the inability to speak meant he could no longer serve as a lector at his church, Rice wrote down those words and meant them.

Mealtimes now involve a protein drink dripped into a feeding tube inserted in his abdomen. But he uses his imagination, Rice says, to pretend he's dining on favorites such as chicken-fried steak or, today, turkey roasted to a gleaming brown.

Bill and his wife, Dee, moved to Sioux Falls in 1960. Twenty years later, after raising their family here, they relocated to Mobridge, returning in 2005 to be closer to children in Vermillion, Mitchell, Mankato and Alexandria, Minn. (Another daughter currently lives in Norway.)

His first life lessons came from his parents, who raised their four sons to "fly the coop" and do what they thought was right.

Other lessons varied: Taste everything on your plate. Hours spent asleep before midnight are most valuable. Try your hardest in school and respect your teachers and coaches.

Rice, the oldest son, was his younger siblings' role model, says his brother Ed in a recent interview from his home in eastern Tennessee.

"He still is," Ed adds.

When Rice served in the U.S. Navy, he was assigned to explosive ordnance disposal. ALS has robbed him of his ability to smile, but his sense of humor comes through as he waits for reaction to the motto he and fellow crewmen followed: ultimate success or instant failure.

The closest Rice ever came personally to instant failure was needing his reserve parachute 25 years ago while skydiving over Joe Foss Field.

But even the happiest of lives holds shadows. The Rices' son, Jon, died in 1984. Faith got them through the sorrow.

If Rice has a regret, it's that he sometimes looked unkindly on folks who weren't willing to help others through volunteering their time.

"By volunteering, I've had experiences that money can't buy," he writes. "To pay back to humanity, I volunteered as a medical guinea pig for cancer, Alzheimer's and kidney replacement tests in 2000 and 2001."

Rice's interest in volunteering led him to be a case study for the University of South Dakota department of communication disorders with Dr. Liz Hanson. Videos of his decline in speech will be used in class.

"Hopefully, her future students will be aware of bulbar ALS onset," he writes. "It seems we need to provide examples of ALS, as some go two years not knowing the signals."

Rice and his wife belong to an ALS support group. Although he has progressed from a cane to a walker or a wheelchair, he writes, "I can't feel sorry for myself - as others are facing worse circumstances. I'll be 74 on Thanksgiving, and I pray for the people in their 40s and 50s."

When Rice shops or does his banking, he now communicates through notes. People often reply in much louder voices or respond by writing notes themselves, he notes with wry amusement.

Humor, optimism and faith help Rice face the future. He hopes he'll be around to vote in the 2008 presidential election, but that's not the most important thing.

He treasures a note handwritten by one of his doctors, Dr. Brian Kidman: "Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid." John 14:27.

Reach Jill Callison at 331-2307. Her column runs on Thursdays.
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