When persistent muscle twitching symptoms started in 2018, Chicagoan Steve Cochlan turned to his doctor for answers. After a series of appointments and tests, it was confirmed in April of 2019 he had ALS. “The doctor had nothing to offer me [in terms of a cure],” he says. He told Steve he had two to five years left to live and said, “you need to go home and get your house in order.”
After he was diagnosed, Steve immediately reached out to the team at The ALS Association Greater Chicago Chapter for more information. While the team at the Chapter had been incredibly helpful providing resources and support, Steve still felt a void in what he needed to help him process his diagnosis and his experiences now living with ALS.
“After being diagnosed, and as I was trying to come to grips with ALS and what it meant for me, my family and our future, I realized that there is really no dedicated resource specifically related to ALS that helps provide current hope and comfort to those individuals who either have ALS or are significantly impacted by this dreadful disease,” says Steve.
At that point he realized he needed to turn to his faith to help him live with the disease. Steve assembled a team and got to work developing ALS Family of Faith, a new ministry designed to meet the needs of those looking for prayer and spiritual counseling during their journey with ALS. The mission of this unique organization is to provide comfort and hope for all individuals who are involved and impacted by ALS. “It is, hopefully, a place where individuals involved with ALS can be loved, supported, listened to and prayed for,” he says.
“In an intentional and committed way, our goal is to lovingly be there for individuals who would like to reach out to us for comfort, strength, peace and joy despite their current circumstances,” says Steve. ALS Family of Faith assigns a “care partner” trained in ALS-specific needs to each individual with ALS or their caregiver or loved one who provide support sessions. These meetings often take the form of hopeful discussions or careful listening, sometimes involving the validation of difficult emotions or fears, holding space for grief, or guiding someone through conflicting feelings.
While this type of support won’t reduce muscle twitches, provide a cure, reverse a diagnosis, or banish negative emotions, it can provide much-needed comfort, rest, and hope for people who desperately need it. “We hope and pray that people involved with ALS will take advantage of this initiative and be encouraged that God is with us all the time and He lovingly provides us with much appreciated and desired eternal hope,” says Steve.
Special thanks to Steve Cochlan and the team at The ALS Association Greater Chicago Chapter for allowing us to share this inspiring story of hope for people living with ALS. To continue to follow stories about people living with ALS in the community and learn more about the disease, follow our blog at als.org/blog.