Steve Cochlan can’t sleep.
He lies down and closes his eyes. He rests his head on a pillow. Sometimes, he’s even technically unconscious. But real rest never arrives.
Throughout the night, Cochlan’s muscles twitch, constantly and involuntarily. These twitches, called fasciculations, started about three years ago, and they eventually became concerning enough that Cochlan went to his doctor at the Mayo Clinic for an assessment. One appointment led to another, one test to the next. Then, on April 23, 2019, doctors officially diagnosed Steve with Amyotrophic Lateral Sclerosis (ALS).
ALS is also known as Lou Gehrig’s disease, after the beloved baseball player who brought national and international attention to the disease. It is a fatal condition with no cure or remedy. In the United States, around 6,000 people are diagnosed with ALS each year, one every 90 minutes. The disease progresses differently from person to person. Some lose the ability to pick up a fork or speak clearly soon after their diagnosis, while others are able to walk or talk or write with a pen for years. Overall, though, the statistics are grim: after diagnosis, people with ALS live an average of only three to five years.
Cochlan’s diagnostic appointment was a sobering one. “The doctor had nothing to offer me [in terms of a cure],” he says. The doctor told Cochlan that he had a few years left, and the conversation boiled down to “you need to go home and get your house in order.”
Living Between Two Poles
Subsequent to leaving Mayo Clinic, it was recommended that Cochlan connect with the Greater Chicago Chapter of the ALS Association. Before he knew it, he was spending dozens of hours every week on things relating to his condition: going to doctors’ appointments and then reading and researching various programs and initiatives provided by the ALS Association and other organizations.
Prior to being diagnosed with ALS, Cochlan had spent more than 30 years as the founder, president, and CEO of The Cochlan Group, Inc., an insurance and executive/director benefits organization. But responding to his ALS diagnosis ate away at his time and attention. It became a job unto itself. Anxiety can worsen symptoms, but avoiding it while dealing with the disease felt impossible. “The major thing they say is ‘get stress out of your life,’” Cochlan explains, “but I just don’t know how you do that.”
Through the ALS Association and other groups like it, Cochlan was able to find resources, common experiences, and critical information. He also found tremendous support in his friends—people who shared his faith, prayed for him, and helped him keep his eyes on Jesus.
Between these two poles, however, he felt a gap. He longed for a Christ-centered organization that could help him process his diagnosis and his experiences with ALS.
“There really is no place that brings Christ-centered love and support to ALS people, their caretakers and the families,” he explains. Why wasn’t there a place that addressed both of these dynamics, with specific attention to ALS through a Christ-centered approach? Could there be? Could he help create one? “God gave me a sense of urgency to use my remaining time to bless others through this significant trial in my life,” he says.
Being the Change
Cochlan soon realized that he was looking for something similar to a corporate chaplain: a person or organization whose role would be providing Christ-centered love and support to a specific group. And, while he knew the idea was a good one, he didn’t know how to make it a reality. During a round of golf—which he thanks God he can still play “even though it’s ugly, and I can only hit the ball about 150 yards now”—Cochlan shared his idea with Bill Shiell, the president of Northern Seminary.
“You know what?” Shiell said. “I have someone who may be able to help you.”
Shiell connected Cochlan with Tommy Lee, the executive director of the Grow Center for Church and Mission at Northern. The Grow Center, named in honor of philanthropist Brimson Grow, connects pastors and Christian marketplace leaders, helping them combine their faith and entrepreneurial talents in sharing the gospel.
A few weeks later, Joumana Baroody, a friend at the ALS Association, offered to connect Cochlan with Julie Sharpe, the president and CEO of the ALS Association Greater Chicago Chapter. While Sharpe couldn’t work with Cochlan in a professional capacity due to her role at the association, she could support his endeavors as a private individual and volunteer to help Cochlan, as she put it, “bring his vision to fruition.”
The three of them proved to be a powerful combination. Cochlan had the personal experience with ALS, the understanding of the loneliness and isolation the disease can bring, and the idea for offering the support to others that he longed for himself. Sharpe had years of experience and history coming alongside individuals living with ALS and their families; she’d listened to them, learned from them, and loved the idea of an organization equipped to meet the needs of those looking for prayer, comfort, and support. And Lee had a keen entrepreneurial mind knit together with a kingdom perspective.
Drawing from this well of talent, the Grow Center launched ALS Family of Faith, offering exactly what Cochlan had been looking for in the early days following his diagnosis: ties to Christ-loving people equipped to offer ALS-focused care. Cochlan founded and funded the group, which now provides support to those facing the unimaginable life-change brought about by an ALS diagnosis. And it does so at a timely moment. On June 2, Major League Baseball will observe Lou Gehrig Day, an annual event raising awareness and support for those impacted by ALS.
Write Your Own Script
Care partners who’ve been trained in ALS-specific needs are Northern Seminary alumni, student chaplains, and master’s students who have completed their counseling or chaplaincy degree coursework at Moody Theological Seminary. The ALS Family of Faith provides them with the opportunity to walk alongside those with ALS and their families. What can individuals expect from this service? Cochlan is emphatic on this point. The person in need of encouragement—whether it’s someone with ALS, a caregiver, an ALS family member (or even an ALS loved one)—“writes the script.” The only agenda item is this: provide Christ-centered love, encouragement, and comfort that is meaningful to the person on the other end of the line.
That love, encouragement, and comfort could take the form of hopeful discussions or careful listening. Sometimes it will involve validating difficult emotions or fears, holding space for grief, or guiding someone through conflicting feelings.
These love and support sessions won’t reduce muscle twitches, and they can’t provide a cure, reverse a diagnosis, or banish negative emotions. But they can, in the power of the Holy Spirit, offer a glimpse of comfort, rest, and hope to people who desperately need it.
After all, that desperation can be all too real. Sharpe explains that ALS can be a very isolating disease. People with ALS lose muscle function, often including the ability to communicate verbally. “Cognitively, they’re the same person that they’ve always been, but they can’t communicate,” she says. “I’ve heard so many [individuals with ALS] say that they feel as though they are a burden to others.”
Caregivers have trials and needs of their own. Many struggle with exhaustion, fear of the future, and ongoing grief as their loved one slips away. They may wrestle with guilt after their loved one dies because, in addition to sadness, they experience the relief of having space to fully experience the grief and exhaustion they’ve neglected for years.
Cochlan prays that relationships and real connections will be built during these sessions. ALS Family of Faith assigns a care partner to each individual with ALS or their caregiver or loved one. This process ensures the continuity, consistency, and comfort of naturally picking up conversations. And ALS Family of Faith understands that finding the right fit with a care partner is important, since they can be like a new family member. If someone feels like the pairing isn’t working, they can easily request a different care partner. In the end, ALS Family of Faith is about supporting members of the ALS community as they themselves want to be supported—with humility, love, and encouragement.
The ALS Family of Faith’s founder, volunteers, and care partners all desire to share the hope of the gospel with others. Sometimes, that will require listening. Or praying. Or simply affirming that ALS patients and their families are not alone.
Cochlan hopes that ALS Family of Faith can be replicated in the future to serve other specific populations. Lee and the Grow Center hold the same hope; they eventually want to expand to encourage those with cancer and their loved ones as well. Now that they’ve seen a need and a way to meet it, they see the need everywhere.
Cochlan doesn’t know how much longer God will give him before he exchanges his earthly offerings of temporary rest for the eternal rest that awaits him. However long it may be, he plans to continue to invite the weary into moments of comfort. “I hope God will encourage others through me,” he says. “He has certainly encouraged me.”