When Christian James was heading to the neurologist at the University of Cincinnati Medical Center, his son, a student at UC at the time, met up with him for the appointment. 

“I thought, that’s fine. It’s not going to be that big of a deal,” he said. 

Christian says he and his wife, Kim, knew the worst-case scenario was an ALS diagnosis, which was confirmed that day in 2015. 

“My first thought was: Don't say it. My wife and my son are in the room. They're not ready for this. He looked like he was going to cry -- my doctor,” Christian said. 

He said the diagnosis was a punch in the face.

“It was a horrible day. Yeah. Probably the worst day of my life. The worst thing was I felt like I was putting my family through this.”

The diagnosis came as one of his daughters, a senior in high school at the time, was going through exam week. He and Kim decided to hold off telling the family the news so she could focus on school. In the meantime, they started working on a new plan for the future.

“I couldn't sleep. When I did fall asleep, I couldn't get out of bed. My mind was just wandering,” he said. “How long am I going to be able to work? How are we going to afford this disease? The horrible things I'm going to put my family through. My wife is going to have to take care of me.” 

Kim has taken on the role of primary caregiver.

“If I didn't have my wife, I would be lost,” Christian said. 

He talked about seeing her take on some of the responsibilities around the house that used to be his. 

“She cleaned out the garage the other day. That was my job,” he said. “She does all the landscaping, all the yard work. And she's learned how to hang pictures. She's learned how to put air in her tires – all the little things that were just my job as the husband and the father.”

Christian says one of the worst aspects of living with ALS is the feeling of helplessness. 

“They tell you when you get diagnosed, ‘There's nothing we can do for you.’ As compassionately as they can, they tell you that. ‘We can't stop it. We can't cure it. We're just here to make you comfortable. Go home, get your life in order’,” he said. “And you're trying to be strong for your family, for your children, trying to be strong for my wife, letting her know it's going to be okay and knowing that it's not, that it's going to get worse”

Reflecting on his own experience, Christian says he mentors newly diagnosed patients to process their emotions honestly. 

“Cry. Be upset. Be angry. Get those emotions through your system. You're allowed to have them. You have to be emotional about this,” he said. “But then eventually, you've got to wake up and you have to start living your life and you have to look around at what you have and the wonderful life you've lived and you have to keep living your life. You can't give up. You have to be positive,” he said.

And for Christian, being positive is centered on family. 

“Don't worry about the little stuff. Don't worry about your daily minutia, the little things in life, because they don't matter anymore. You're worried about what's important, your family, your friends, your faith. And I really wish I knew that 15 years ago. I wish I knew to focus on what was important. I feel like I wasted a big part of my life focusing on what wasn't important,” he said. 

He also talked about the importance of not spiraling into depression. 

“I woke up one day. I was still in this funk, still in this horrible mood, not sleeping, just not thinking clearly. And my wife said, ‘You know what? You just got to get out of bed every morning and you have to live your life. You have to live for today, enjoy today, and we'll worry about tomorrow, tomorrow.’ And that kind of snapped me out of it. And that's what we do. We enjoy today. We try to plan ahead, but we just enjoy the moment that we have,” he said.

He says that since his diagnosis, his love for his family has deepened. 

“We spend more time together. It's not forced, it's just – we do. My wife and I spend a lot more time together at home. Our kids come over a lot. We spend a lot more time together as a family, just enjoying the things that we can do now. So that's the plan, enjoying friends, enjoying family,” he said.

“We just live every day and enjoy every day as much as we can and just try to be positive. Our faith has a lot to do with it.”