Comfort in the face of adversity

THOMPSON FALLS - Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, according to the ALS Association, “Is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to death.” This means that as the body’s muscles lose connection with the brain, the person with ALS will go through atrophy and eventually lose his or her muscles and eventually become paralyzed and die.

Erich Kaelberer, a husband, father of two, a retired fire fighter and the current pastor of the Shepherd of the Valley Lutheran Church, was recently diagnosed with ALS.

“January is when it all started,” Kaelberer said, as he described how the onset of his symptoms started about a year ago. He noticed he was becoming weak and tripping a lot, but passed it off as just being out of shape. Eventually, his symptoms became worse, and the weakness and tightness in his muscles became stronger. After a gamut of tests and doctor visits, everything was ruled out except ALS.

“Now it is just figuring out the best way to live with it and prolong things...” Kaelberer says.

Before Kaelberer became a pastor, he lived an active life and though he was not a pastor in the beginning, he dedicated his life to helping others. “I fought fire out of high school... I was on engine for the first couple of years and then I was on Hot Shot Crew in Wyoming, the Wyoming Inter Agency Hot Shot Crew for a couple years, so I fought fire for five years total,” described Kaelberer.

“And then I went to school for a little bit and there I got a degree in Police Science, but really wanted to help people on a different level...” explained Kaelberer, as he went on to describe going to seminary school and leaving behind fire fighting to start a family. During his senior year he met his wife and had his first child, Daelyn, who will turn four in April.

After his first pastor position in California for two years, Kaelberer with his wife and daughter moved to Thompson Falls two years ago to become the pastor at the Shepherd of the Valley Lutheran Church.

Today, as Kaelberer’s condition worsens, his voice is changing, his left leg has become very week, his overall stamina is diminishing and by the end of the day he needs to sleep for a few hours to make it into the night to be with his family. As Kaelberer’s muscles and nerves slowly begin to deteriorate, he has lost many of life’s enjoyments, but has been able to hold on in certain ways. An avid fisherman, Kaelberer finds time to go out once or twice a week with the help of a friend or member from the congregation. “In a boat I can still fish,” he says. “It’s getting harder, so while it’s solace, it’s also frustrating,” he went on to explain.

Kaelberer loves many more activities that he slowly is losing the ability to do. He has lost the ability to sing and can no longer pull the bow back for archery.

As a man who grew up and lived for the outdoors, Kaelberer and has lost much of what was an intricate part of his being, but he has found a way to maintain a connection to nature. “You do fill those things with things you do like... driving and taking pictures of places I love around here and so I have memories of those places while I am in Cody,” he said, as he went on to describe how he has been making filet knives with a member of the church to stay connected to fishing.

He has had to make hard choices, but he is not alone in his fight. “My family has been great, my extended family on both sides, my extended family and my in-laws have all been wonderful,” said Kaelberer, then adding, “My wife has been very strong and supportive and the kids are so young that they really don’t understand what’s going on.” Along with his daughter, Kaelberer has a seven month old son, Devyn.

“I usually get up with my daughter. She usually wakes me up and I make her breakfast. The morning is the best time for me, so I help out in the morning, as limited as I am I will pick things up,” said Kaelberer, laying out his day. He then talked about going to the office and then making rounds at hospitals for those in need of a pastor. “Around four or so I lay down and fall asleep until dinner. Then after dinner I hang out with family as long as I can.” Kaelberer’s right leg is still in good shape, and he can drive himself places, but simple tasks have become taxing and he is learning to take things slowly.

During his sermons, Kaelberer uses a stool, where he would typically stand. For the longer readings, members of the congregation will read for him because of his changing voice

Kaelberer is very thankful for the help his congregation has given him. Eventually, when business is taken care of, the Kaelberer family will move to Cody, Wyoming, where Kaelberer is from, to be with family and more help. “They’ve been helping us do stuff. The ladies have been helping with child care so my wife can pack... They’ve been very loving and supporting,” said Kaelberer. His congregation is having a spaghetti dinner on April 11 to help raise funds for the family.  

At the dinner, which will take place in the Thompson Falls Elementary School Cafeteria, there will be a silent and live auction. The congregation has also set up a separate silent auction of nine baskets, which is occurring up until the 11th, at the Thompson Falls Library. In addition, every Saturday from 10am to 4pm until the 11th there will be a raffle for a gun and or a quilt.

Back in Cody, Wyoming Kaelberer plans on working part time at a church where he knows the pastor well. His wife, Jenni, who is a Director of Christian Education plans on also working at the church.

There are many unknowns for Kaelberer and his family. According to the ALS Association, eventually a person who has ALS loses major muscle control, which eventually includes losing the ability to swallow and breath independently. “About twenty percent of people with ALS live five years or more and up to ten percent will survive more than ten years and five percent will live 20 years. There are people in whom ALS has stopped progressing and a small number of people in whom the symptoms of ALS reversed,” states the ALS Association.

With his condition worsening, Kaelberer has had to not only adjust to not being able to do the activities he loves, but also to how to change his inner being. “It’s surreal being on the other side of things. As a pastor, as a firefighter, as all of those things, you’re always the one that’s there to do the things and relying on help is tough and it has given me great perspective on what people go through,” he says, as he talks about the help he has been given from his family, congregation and doctors. To sum up his feelings of help, he says it is surreal, but he knows he needs to succumb to the aspects of what the disease means, and that help must come in order to take care of his family.

A man of strong conviction, Kaelberer is confident 100 percent in one thing. “Faith is everything, so of course I pray that there is a cure, but to be honest with you, I trust God and I know that his will is perfect, so I am not afraid of it. I know where I am going and so that if his will is that if I will be cured and then that will happen cause I’ve prayed and I know God will answer it in his time and will. And if not, I know where I am going, so I feel very secure in that.”