By Alyssa Pitcher
Friends and family of a longtime Blaine resident are asking the community to help him stay in his home.
Gary Harbst has been fighting amyotropic lateral sclerosis (ALS), commonly known as Lou Gehrig’s disease, for 11 years now. The average life expectancy of those diagnosed is two to five years. ALS is a disease that affects nerve cells in the brain and spinal cord causing the gradual loss of muscle control. People with the disease lose their ability to move, speak, swallow and breathe.
“I live now with a body that reminds me constantly that an illness has moved in and will have its way with me,” Harbst said in an email. “I am not terrified by it. I am able to view my disease’s unceasing symptoms not as my body failing, but as my body fighting.”
“It’s a little surreal just watching him go through that,” said Mike Halldorson. “It doesn’t affect your mind. You’re all there just like you always have been.”
Halldorson is a home designer and builder, and Harbst’s best friend. He is spearheading the fundraising efforts, via GoFundMe.com, to refurbish Harbst’s home to better accommodate his illness. The goal is to raise $100,000 to cover home renovation and specialized medical equipment costs, such as a motorized chair. Harbst has lived in the house for 25 years.
Although he has managed the disease well so far, Halldorson said it has advanced a lot in the last couple of years. Harbst can walk but has difficulty when he needs to pick up his feet to step onto a curb. Halldorson said Harbst isn’t using a motor chair, but his condition makes it inevitable.
“We’ll cross that bridge when it comes,” Halldorson said.
Halldorson has been working with Harbst to design a revised floor plan for his home that will make it ADA (Americans with Disabilities Act) accessible.
“Knowing full well the challenges which were in front of me for years, I actually started working on redesigning my house plans six years ago,” Harbst said.
Home renovations will include a garage, level access to the entry, wider doorways and a motor chair accessible bathroom. Other work includes standard maintenance, such as redoing the exterior and roof.
About $5,000 has been raised for renovations so far and is being put to use already, Halldorson said. Harbst’s property is being staked out for excavation locations for the garage and rear patio improvements. The alley behind it has been updated to allow better access.
“[Halldorson] wants to make the plan happen now so it can impact the quality of my life immediately, as opposed to finishing late and have it be more like a monument to a life once lived,” Harbst said. “So I get it. I am truly humbled by the gesture and love him for it.”
The first phase of construction involves building a garage and laying down dirt and concrete around the house. Halldorson said this will create groundwork for the rest of renovations. The garage, he said, is important once Harbst starts using a motor chair because it will allow him to easily park his car and enter his home.
“As the funds come in we’ll be prioritizing the best way to use them during the construction process,” Halldorson. Volunteers have already pledged their time to the construction project, which will be done in phases.
“I thought with the limited mobility options I’m facing, these changes would not only offer me significant independence for as long as possible, but also provide room for my ever-growing family to gather around me comfortably in this new reality,” Harbst said. He is a single father of five and a grandfather of seven.
Since Harbst was diagnosed with ALS he has slowly lost the ability to do things he loves, such as music and softball. Halldorson said watching his friend go through that has been difficult, but it has opened his eyes to what real struggle looks like and the blessings in life that he often takes for granted.
Harbst said the diagnosis was like having the wind knocked out of him. His strength to face the future came from faith and the support of Halldorson and other close friends.
“The hardest part of my diagnosis without a doubt was having to gather my children around me and deliver the news. The fear and profound sadness on their faces as we wept was devastating,” Harbst said.
For 15 years now, Harbst and Halldorson have been best friends. “[Halldorson] is not just a friend, but also my brother,” Harbst said. “We have spent countless hours together over the years, everything from working on a job site and sitting in the pews, to playing mass amounts of music or softball together. Then again, we have also spent countless other hours doing nothing but sitting on our duffs, chin-wagging.”
The two bonded over a mutual love of softball and music. Harbst played drums and Halldorson plays the electric guitar in a coffeehouse band called Soul Plumbers. In 2001, Harbst taught himself to play the drums so he could play in worship services at the church he was attending at the time, North Bay Christ the King.
For a year he would go to the church after his children went to bed each night and practice for a few hours. “Ironically, it was during these intense practice sessions that I became aware of weakness in my left hand,” Harbst said. “So playing drums was the catalyst that eventually lead to the diagnosis.”
Harbst still has the ability to walk and drive a car and has adapted to using different tools, such as straps on doors to pull them open. “He’s just adapting, fighting it out and staying functional,” Halldorson said.
Determined to continue playing the drums, Harbst designed gloves to help him grasp his drum sticks allowing him to continue to play much longer than he would have otherwise, Harbst said.
“We played for more than a decade together before the ALS got so far he had to hang up his sticks,” Halldorson said. “That was a hard day, but I was able to play with him that very last set.”
Harbst has been an active member in the community of Blaine. He offered his time in volunteer work at Northwood Alliance Church as well as North Bay Christ the King Church. Harbst supported Blaine school district’s sports programs by coaching and fundraising, and was an assistant hockey coach for the Whatcom County youth hockey league.
Halldorson said Harbst’s home was an open door to anyone, especially while his five kids attended high school. “He’s just one of those rock-solid characters and principled guys that you can always count on,” he said.
“My family and I made Blaine our home. I have a vested interest in and responsibility to this community,” Harbst said. “My children have lived here their whole lives.”
To donate visit: gofundme.com/GaryHarbstALS
To volunteer contact Mike Halldorson at 360/815-5201.