Ride For Life: ALS patient longs to return home

If you look in Chris Cramer's expressive eyes and listen to his slurred speech, it's clear: He wants to die in his Tulsa home. Amyotrophic lateral sclerosis, known as ALS or Lou Gehrig's Disease, has weakened his body to the point that he must have nursing care.

But his home has deteriorated into a safety hazard. A friend helped place him in a nursing home after no one could make the necessary repairs to the house.

"I am not a typical nursing home patient," Cramer said slowly, with the help of a registered nurse. "I am a prisoner here. Everyone is new, and they don't know what to do with me.

"They treat me like I have no brain. It'll be less stress at home."

ALS is a progressive disease that attacks a person's motor skills. The person's mind remains intact, but his or her body slowly falls apart.

Most ALS patients live for two to five years after their diagnosis. There is no known cure for the disease.

Cramer first noticed that something was wrong with his left hip and coordination. After a series of medical tests, he was diagnosed May 15, 2001, with ALS.

The only movement left in his body is from his slow-moving right hand, strained speech and his eyes.

Cramer lived in his historic, midtown home for more than a year after his diagnosis. He tried to stay independent as long as he could.

Before he became ill, Cramer was in the process of renovating the home by pulling up part of the kitchen floor, all of the carpet and taking out some bathroom fixtures.

"It moved very quick," he said, occasionally having to spell a word for communication. "I thought I'd have more time."

He bought the house 30 years ago and paid off the mortgage this year. He intended to use the money that had gone for the mortgage for updates.

He also collected hundreds of flea-market items over the years to restore and sell for extra money. But the items are now stacked in boxes in various rooms, cluttering the home.

Cramer never married and has no children. His parents lived in Tulsa until they moved to New Mexico in 1999.

His father, Bob Cramer, died last week of cancer. He will be buried Tuesday at Rose Hill Memorial Park, but his son is too ill to attend.

Chris Cramer's 79-year-old mother, Bee Cramer, is recovering from pneumonia and has been unable to visit her son since last year.

"He's so unhappy right now," she said during a telephone interview. "I do hope to see my son before he passes. But everyone has told me that the best favor I can do for him is not to arrive sick."

Bee Cramer said people who have helped Chris have called her to tell her about Chris falling out of bed or sustaining other injuries through accidents. He has moved to three nursing homes in two months.

Because the disease has taken away most of his communication skills, Cramer has overheard people refer to him as "retarded" or as a stroke victim "brought on by the devil."

"I know he has suffered indignities," his mother said. "But he never blames other people."

Cramer graduated from Edison High School in 1967 and worked most of his life in the retail business. When he was diagnosed with ALS, he had been working as a legal assistant for several years.

He lost his job after exhausting all of his medical leave and has a current income of slightly more than $1,000 a month from Social Security.

"If he doesn't get into his home, I know he will have a home with his dad and the Lord," his mother said. "We know his time is not long and, Lord willing, he will go in peace."

The home is the only one on its block with paint peeling on the outside. The original roof is still on the house, layered with one or two sheets of shingles.

At least six windows are broken and have plastic foam as a covering. The front-door frame is made of duct tape after someone kicked in the door. The furnace is about 50 years old, and the gas stove is not working.

But Cramer's 17-year-old cat continues to live in a small house in the back yard.
The cat won't let anyone near it, but it is fed each day by Cramer's caretaker, registered nurse Tony Rockefeller, who is trying to coordinate volunteer efforts to clean and repair the house.

Rockefeller said he and about three nurse's aides will donate their time with Cramer to allow him to live in his home. He is seeking supplies for volunteers to use to make repairs with a goal of moving Cramer back into the house within two weeks.

"There are basic safety things to be addressed," he said.

"He deserves to die with dignity. He has never asked for help and does not want government assistance."

Rockefeller and Cramer attended high school together and became reacquainted after Cramer's diagnosis.

"ALS is such an unpredictable disease, and he might live for a few more years," Rockefeller said. "But I think a lot of that depends on his environment and state of mind.

"If he's depressed, it will get worse. But if he's happy and comfortable, he may live longer. Being in his home he worked hard for would give him peace of mind."

With his mind sharp and time to think, Cramer said he has had a spiritual awakening to Christianity.

"I always had faith," he said. "It gives me hope."

TO HELP CHRIS CRAMER Send contributions to the Chris Cramer Fund; Attn: Cindy Heiliger; c/o F&M Bank and Trust Co.; 1924 S. Utica Ave.; Suite 100; Tulsa, OK 74104.